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Palliative Care Issues in The Intensive Care Unit in Adults - DynaMed

Palliative care in the ICU focuses on addressing the physical, psychological, spiritual, and practical needs of patients with life-threatening conditions and their families. Key management strategies include shared decision-making, individualized symptom management for pain, dyspnea, anxiety, and delirium, and a stepwise approach to withdrawing life-sustaining therapies. Evidence suggests that palliative care may reduce hospital mortality and improve outcomes for patients in critical care settings.

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0% found this document useful (0 votes)
15 views82 pages

Palliative Care Issues in The Intensive Care Unit in Adults - DynaMed

Palliative care in the ICU focuses on addressing the physical, psychological, spiritual, and practical needs of patients with life-threatening conditions and their families. Key management strategies include shared decision-making, individualized symptom management for pain, dyspnea, anxiety, and delirium, and a stepwise approach to withdrawing life-sustaining therapies. Evidence suggests that palliative care may reduce hospital mortality and improve outcomes for patients in critical care settings.

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mayri.pediatrics
Copyright
© © All Rights Reserved
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12/4/25, 12:27 Palliative Care Issues in the Intensive Care Unit in Adults - DynaMed

MANAGEMENT • Updated 02 Oct 2023

Palliative Care Issues in the Intensive Care Unit


in Adults
Editors: Matthew B. Bevers MD, PhD; Zbigniew Fedorowicz PhD, MSc, DPH, BDS, LDSRCS; Alexander Rae-Grant MD, FRCPC,

FAAN All Editors & Disclosures


Overview and Recommendations

Evaluation
● Palliative care is interdisciplinary management addressing the physical, psychological, spiri‐
tual, and practical needs of patients with life-limiting or life-threatening conditions, as well
as the needs of their families and/or caregivers. The goal of palliative care for patients in
the intensive care unit (ICU) is to care for them in a manner consistent with their values at
a time when they typically cannot speak for themselves.
● The most common symptoms that need to be evaluated in the palliative care setting
include:
⚬ Pain
– In communicative patients, quantitative scales for patient-reported pain include the
numeric rating scales (NRS), visual analog scales (VAS), and the McGill Pain
Questionnaire - Short Form (MPQ-SF).
– In noncommunicative patients, behavioral symptom assessment by the Critical Pain
Observation Tool or the Behavior Pain Scale, proxy symptom assessment, and clini‐
cian experience and judgment to identify possible sources of distress is used.
⚬ Dyspnea
– In communicative patients, questionnaires are suggested for assessment of dyspnea
and include the NRS and VAS, as well as communication boards.
– In noncommunicative patients, behavioral symptom assessment by the Respiratory
Distress Observation Scale (RDOS), proxy assessment, or use of clinician experience
to assess distress is suggested.
⚬ Thirst and xerostomia
– Regular thirst assessments are suggested in patients who can self-report.
Assessments may include using the NRS or VAS, as well as examining mouth and
tongue for dryness and cracking.
– Assessment of the patient's medication list for the use of anticholinergics, opioids, or
other medications that increase the risk of thirst/dry mouth is also suggested.
⚬ Anxiety
– Ask communicative patients if they are anxious, worried, or scared.

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– In patients unable to write or speak, the use of Faces Anxiety Scale is suggested.
–Assess the patient for nonspecific signs associated with anxiety, such as restlessness,
trembling, diaphoresis, tachycardia, and cold hands.
⚬ Delirium
– Screening patients twice per day is suggested for early detection and treatment of
delirium.
– In patients on mechanical ventilation, consider screening for delirium using the
Confusion Assessment Method (CAM) or Intensive Care Delirium Screening Checklist
(ICDSC).

Management

● Delivering palliative care often requires shared decision-making, which is a collaborative


process that allows patients, or their surrogates, and clinicians to make health care deci‐
sions together, taking into account the best medical evidence available, as well as the pa‐
tient's values, goals, and preferences.
● Comfort care refers to palliative care interventions that provide symptom relief in patients
who are close to death.
● The management of symptoms to assure comfort must be individualized and include non‐
pharmacologic as well as pharmacologic interventions specific to the symptoms of:
⚬ Pain
– Do not allow pain or distressing symptoms to persist in order to help maintain blood
pressure and/or stimulate respiratory effort.
– Opioids are the primary medication to manage pain in patients in the ICU. Short-act‐
ing agents, such as remifentanil and sufentanil, are suggested to decrease the dura‐
tion of mechanical ventilation, length of ICU stay, and procedural pain.
– Other opioids that are sometimes useful include methadone in the nonopioid-naive
patient and fentanyl.
– Nonopioid analgesics, such as acetaminophen, cyclooxygenase inhibitors or keta‐
mine, may be used to prevent or reduce opioid tolerance, especially when pain is re‐
fractory to opioids.
– Gabapentin and carbamazepine are suggested for patients with neuropathic pain.
⚬ Dyspnea
– Nonpharmacologic treatment of dyspnea may include optimal positioning, balancing
rest with activity, a cold cloth on the patient's face, and/or a fan directed at the pa‐
tient's face in patients who are not mechanically ventilated.
– Opioids, such as morphine or fentanyl, are typically used in patients with dyspnea re‐
fractory to disease-modifying or nonpharmacologic treatment.
– Benzodiazepines are generally not as effective as opioids.
– Oxygen is not useful if patient has normoxemia or when a patient is near death and
in no distress, but may be used to treat hypoxemia and reduce lactic acidemia.

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⚬ Thirst and xerostomia


– General measures against thirst include water-soaked gauzes, water spray, ice chips,
topical products containing olive oil, betaine, and xylitol, artificial saliva, and salivary
flow stimulants.
– Heated humidifiers are suggested for patients being treated with high-flow oxygen
therapy.
– Lemon-glycerin swabs are not recommended.
⚬ Anxiety
– A reassuring presence by family members and/or nursing staff may prevent anxiety
from occurring; familiarity of nursing staff and preprocedural explanations may help
minimize patient anxiety.
– Communication boards may help to reduce patient anxiety associated with not being
able to speak while on a ventilator, as can talking tracheostomy devices in patients
with a tracheostomy who are ventilator-dependent.
– In patients with mild-to-moderate anxiety, short-acting benzodiazepines, such as lo‐
razepam or midazolam, are suggested.
⚬ Delirium
– Prevention of delirium in high-risk patients may include environmental adjustments,
such as opening shades and turning lights on or off, ensuring patients with sensory
disorders have glasses or hearing aids, minimizing sensory overload, and providing
uninterrupted periods of sleep in a nighttime environment optimized for sleeping.
– Symptoms of delirium should be promptly treated.
– Nonpharmacologic management may include reorienting the patient, involving family
and friends, and verbal and nonverbal techniques to de-escalate the situation, as well
as addressing medical issues such as pain, hypoxia, infection, metabolic disorders,
and dehydration.
– No single effective pharmacologic approach to treat delirium exists, but dexmedeto‐
midine may reduce the time to delirium resolution, while cholinergic agents do not
appear to be effective.
– Other measures to consider include discontinuation or reduction of the dose of psy‐
choactive drugs, including anticholinergics, sedatives or hypnotics, and opioids, and
replacement with less toxic alternatives.
● Withdrawing life-sustaining therapy including mechanical ventilation should be done in a
stepwise manner individualizing the sequence with the goal of optimizing comfort for the
patient and family.
⚬ Discontinuation of all noncomfort medications, blood transfusions, hemodialysis, vaso‐
pressors, inotropes, parenteral nutrition, enteral tube feeding, antibiotics, IV fluids, and
blood work is suggested.
⚬ Supplemental oxygen is not recommended unless needed for comfort.
⚬ Discontinuing all monitoring not aimed at achieving comfort is suggested.

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Background Information

Description

● Palliative care is interdisciplinary management addressing the physical, psychological, spiri‐


tual, and practical needs of patients with life-limiting or life-threatening conditions, as well
as the needs of their families and/or caregivers. (CA Cancer J Clin 2015 Jul-Aug;65(4):316)
● goal of palliative care for patients in the intensive care unit is to care for them in a fashion
consistent with their values at a time when they typically cannot speak for themselves 2

Definitions
● shared decision-making - collaborative process that allows patients, or their surrogates,
and clinicians to make health care decisions together, taking into account the best clinical
evidence available, as well as the patient's values, goals, and preferences (Crit Care Med
2016 Jan;44(1):188)
● comfort care - palliative care interventions that provide symptom relief in patients who are
close to death (N Engl J Med 2015 Dec 24;373(26):2549)
● family - defined by patient or, in case of minors or those without decision-making capacity,
by their surrogates and may be related or unrelated to patient (Crit Care Med 2017
Jan;45(1):103)
● family-centered care - approach to health care that is respectful of and responsive to indi‐
vidual families’ needs and values (Crit Care Med 2017 Jan;45(1):103)

Integrating Palliative Care and Critical Care

Indications for Palliative Care

● palliative care is reported to improve quality of life of patients and their families regardless
of whether medical condition is acute or chronic or if in early or late stage; may extend be‐
yond patient's death to bereaved family members and loved ones 2
● palliative care strategies include 3
⚬ consultative strategy that utilizes a palliative care consultation service
⚬ integrative strategy that integrates palliative care principles and processes into routine
practice in the intensive care unit (ICU)
⚬ mixed model strategy that combines consultative and integrative strategies
● factors that may trigger palliative care referral in the ICU include
⚬ ICU admission either following a current hospital stay lasting at least 10 days, or occur‐
ring at least 3 times during same hospitalization period or lasting > 1 month

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⚬ patient age > 80 years and at least 2 life-threatening comorbidities, such as end-stage
renal disease or severe heart failure
⚬ post cardiac arrest status
⚬ diagnosis with active stage IV malignancy, intracerebral hemorrhage requiring mechani‐
cal ventilation, and/or median survival < 6 months
⚬ anticipation of patient's death during same ICU stay or medical futility considered or de‐
clared by medical team
⚬ family request or family disagreement with team, advance directive, or each other that
continues > 7 days
⚬ Glasgow Coma Scale
– ≤ 8 points for more than 1 week in patient aged > 75 years
– < 3 points (persistent unresponsive wakefulness)
⚬ multiorgan failure (> 3 organ systems)
⚬ Reference - Ann Palliat Med 2018 Jul;7(3):289

STUDY
● SUMMARY
14% of admissions to ICU meet ≥ 1 trigger for palliative care consultation
COHORT STUDY: Am J Respir Crit Care Med 2014 Feb 15;189(4):428
Details
⚬ based on retrospective cohort study
⚬ 385,770 admissions to medical ICU, trauma/burn ICU, and individual units in United
States from 2001 to 2008 included
⚬ 14% prevalence of ≥ 1 trigger for palliative care consultation
⚬ prevalence of palliative care triggers
– 5.1% ICU admission after hospital stay > 10 days
– 4.3% multisystem organ failure in ≥ 3 systems
– 3.8% active stage IV malignancy
– 3.8% status post cardiac arrest
– 1.7% intracerebral hemorrhage requiring mechanical ventilation
– 0.9% ICU stay > 1 month
– 0.7% global cerebral ischemia
– 0.3% age > 80 years old with ≥ 2 comorbidities
– 0.1% > 3 ICU admissions
– 0.1% advanced-stage dementia
⚬ combined hospital mortality and discharge to hospice in 39.7% of patients with ≥ 1 trig‐
ger vs. 11.1% without triggers (p < 0.001)
⚬ Reference - Am J Respir Crit Care Med 2014 Feb 15;189(4):428, commentary can be
found in Am J Respir Crit Care Med 2014 Jun 15;189(12):1570

Evidence on Impact of Palliative Care Services on Patient Outcomes

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EVIDENCE SYNOPSIS

Palliative care services may reduce hospital and intensive care unit mortality, but in‐
crease do not resuscitate (DNR) orders and hospice referrals.

STUDY
● SUMMARY
palliative care may reduce in-hospital mortality compared to standard care in adults
DynaMed Level 2

SYSTEMATIC REVIEW: Palliat support Care 2017 Dec;15(6):741


Details
⚬ based on systematic review of observational studies
⚬ systematic review of 16 observational studies comparing palliative care vs. standard
care in adults in intensive care unit (ICU) and non-ICU settings
⚬ palliative care associated with reduced in-hospital mortality in analysis of 10 studies
with 9,452 adults (pooled odds ratio 0.66, 95% CI 0.52-0.84)
⚬ no significant difference in length of hospital stay in analysis of 11 studies with
18,330 adults
⚬ Reference - Palliat support Care 2017 Dec;15(6):741

DYNAMED COMMENTARY

The reduced in-hospital mortality seen in this meta-analysis may be the result of inclusion
of terminally ill patients who were not imminently dying with possibly increased in-home or
in-hospice deaths after discharge, which is often a motivating desire for patients at the end
of life. These results may not be generalizable as the studies included were confined to
metropolitan teaching hospitals in the United States.

STUDY
● SUMMARY
introduction of palliative care team may reduce ICU mortality and length of hospital
stay in terminally ill adults in ICU DynaMed Level 2
SYSTEMATIC REVIEW: Palliat support Care 2017 Jun;15(3):376
Details
⚬ based on systematic review of mostly observational studies
⚬ systematic review of 8 studies (1 randomized trial and 7 observational studies) com‐
paring introduction of palliative care teams vs. standard care in 7,846 terminally ill
adults in ICU
⚬ introduction of palliative care team associated with
– reduced ICU mortality in 4 studies with 5,429 patients (risk ratio 0.78, 95% CI 0.7-
0.87)

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– reduced length of hospital stay in 4 studies with 914 patients (mean difference
2.44 days, 95% CI 4.41 days to 0.48 days), results limited by significant
heterogeneity
⚬ Reference - Palliat support Care 2017 Jun;15(3):376

STUDY
● SUMMARY
palliative care services may increase number of comfort care - do not resuscitate or‐
ders and use of medications aimed at symptom palliation compared to standard care
in patients in neurointensive care unit DynaMed Level 2
COHORT STUDY: J Palliat Med 2019 May;22(5):489
Details
⚬ based on retrospective cohort study
⚬ 149 patients (mean age 42 years) in neurointensive care unit had palliative care ser‐
vice or standard care
⚬ comparing palliative care service vs. standard care
– comfort care - do not resuscitate order (CC-DNR) in 89.3% vs. 69.2% (p = 0.002)
– pain/dyspnea medication ordered within 24 hours of death in 97.6% vs. 67.7% (p
< 0.001)
– anxiolytics/agitation medication ordered within 24 hours of death in 88.1% vs.
44.6% (p < 0.001)
– respiratory secretion medication ordered within 24 hours of death in 83.3% vs.
43.1% (p < 0.001)
– pastoral care consult in 78.6% vs. 41.5% (p < 0.001)
– time from change to CC-DNR status to death 82 hours vs. 9.4 hours (p < 0.001)
⚬ no significant differences in restraints ordered within 48 hours of death or nausea
medication ordered within 24 hours of death
⚬ Reference - J Palliat Med 2019 May;22(5):489

STUDY
● SUMMARY
palliative care consultation in the ICU may increase number of code changes to do
not resuscitate order and hospice referrals compared to standard care DynaMed Level 2
COHORT STUDY: J Pain Symptom Manage 2017 Jan;53(1):5
Details
⚬ based on prospective cohort study
⚬ 405 patients in intensive care unit who screened positive for palliative care criteria
had either palliative care consultation or standard care
⚬ comparing palliative care consultation vs. standard care
– code change to do not resuscitate order in 74.1% vs. 19.6% (p < 0.0001)
– hospice referrals in 28% vs. 4.1% (p < 0.0001)
⚬ no significant differences in length of hospital stay or 30-day readmissions

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⚬ Reference - J Pain Symptom Manage 2017 Jan;53(1):5

Support for Family Members

● Society of Critical Care Medicine (SCCM) recommendations on family-centered care in the


intensive care unit (ICU)
⚬ family members of critically ill patients may be offered open, flexible family presence at
the bedside that meets their needs, while providing support and positive reinforcement
for staff to work in partnership with families to improve family satisfaction (SCCM Grade
2D)
– family members may be provided the option of participating in interdisciplinary team
rounds to improve satisfaction with communication and increase family engagement
(SCCM Grade 2C)
– family members of critically ill patients may be offered the option of being present
during resuscitation efforts, with a staff member assigned to support the family
(SCCM Grade 2C)
⚬ proactive palliative care consultation may be provided to decrease ICU and hospital
length of stay among patients with advanced dementia, global cerebral ischemia after
cardiac arrest, prolonged ICU stay, or with subarachnoid hemorrhage requiring mechan‐
ical ventilation (SCCM Grade 2C)
– family may be provided with leaflets that give information about the ICU setting to re‐
duce family member anxiety and stress (SCCM Grade 2B)
– ICU diaries may be implemented to reduce family member anxiety, depression, and
posttraumatic stress (SCCM Grade 2C)
– validated decision support tools such as decision aids may be implemented for family
members to optimize quality of communication, medical comprehension, and reduce
family decisional conflict (SCCM Grade 2D)
– communication approach, such as the “VALUE” mnemonic (Value family statements,
Acknowledge emotions, Listen, Understand the patient as a person, Elicit Questions),
may be used during family conferences to facilitate clinician-family communication
among surrogates of ICU patients with poor prognosis (SCCM Grade 2C)
⚬ routine interdisciplinary family conferences may be used to improve family satisfaction
with communication, trust in clinicians, and reduce conflict between clinicians and family
members (SCCM Grade 2C)
– structured approaches to communication, such as those in the “VALUE” mnemonic,
may be used when communicating with family members, specifically including active
listening, expressions of empathy, and making supportive statements around nona‐
bandonment and decision making (SCCM Grade 2C)
– family members of dying patients may be offered written bereavement brochure to
reduce family anxiety, depression, and posttraumatic stress, and improve family sat‐
isfaction with communication (SCCM Grade 2C)

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– ICU clinicians may be given family-centered communication training as part of critical


care training to improve clinician self-efficacy and family satisfaction (SCCM Grade 2D)
⚬ proactive palliative care consultation may be provided to decrease ICU and hospital
length of stay (LOS) among patients with advanced dementia, global cerebral ischemia
after cardiac arrest, prolonged ICU stay, or with subarachnoid hemorrhage requiring
mechanical ventilation (SCCM Grade 2C)
– ethics consultation may be provided to decrease ICU and hospital LOS among pa‐
tients with value-related conflict between clinicians and family (SCCM Grade 2C)
– social workers may be included within interdisciplinary team to participate in family
meetings to improve family satisfaction (SCCM Grade 2D)
– family navigators such as care coordinator or communication facilitator may be as‐
signed to families throughout the ICU stay to improve family satisfaction with physi‐
cian communication, decrease psychological symptoms, and reduce costs of care and
length of ICU and hospital stay (SCCM Grade 2C)
– spiritual support from spiritual advisor or chaplain may be offered to families of ICU
patients to meet their expressed desire for spiritual care (SCCM Grade 2D)
⚬ nurses may be involved in decision-making about goals of care and train them to pro‐
vide support for family members to decrease ICU and hospital LOS, and to improve
quality of communication in the ICU (SCCM Grade 2D)
– policies to promote family-centered care in the ICU may be implemented to improve
family experience (SCCM Grade 2C)
– noise reduction and environmental hygiene practices may be implemented, and pri‐
vate rooms used to improve patient and family satisfaction (SCCM Grade 2D)
– consider family sleep and provide families sleep surface to reduce effects of sleep de‐
privation (SCCM Grade 2D)
⚬ Reference - SCCM guideline on family-centered care in the neonatal, pediatric, and adult
ICU (Crit Care Med 2017 Jan;45(1):103)
● several factors reported to impair communication and decision-making abilities of patients
and family members, particularly in ICU setting, including
⚬ significant psychological morbidity, including anxiety, depression, and/or posttraumatic
stress symptoms
⚬ cognitive blunting due to sleep deprivation
⚬ anticipatory grief
⚬ maladaptive reasoning due to learned helplessness
⚬ personal and family conflicts
⚬ overoptimistic biases leading to misinterpretations of prognostic information
⚬ Reference - Ann Am Thorac Soc 2014 Mar;11(3):435
● in the intensive care setting when patient lacks decision-making capacity, key components
of a family conference reported to include

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⚬ explanation of clinical scenario, including nature of the decision and clinical issues to be
addressed, clinically reasonable options (also outlining benefits, burdens, and risks of
each option), acknowledgement of uncertainty in the estimated likelihood of treatment
success, assessment of family members' understanding of the nature of the decision,
and inquiry about the patient's preferences, priorities, and values
⚬ exploration of family's preferred role and level of involvement in decision-making (in‐
cluding if there is anyone else the family would like to consult) and periodically reassess‐
ment of family preferences in decision-making role, which may change over time or with
changing prognosis
⚬ deliberation on how the decision could impact patient's life and if the family has indicat‐
ed a preference to participate in shared-decision-making along with eliciting family opin‐
ion on treatment choice most appropriate for the patient
⚬ Reference - Chest 2008 Oct;134(4):835
● in addition to interdisciplinary family meetings, consider multiple platforms for clinician-
family communication, including
⚬ family-centered rounds, in which family members are invited to be at bedside when
multidisciplinary rounds are conducted, with provision of brief lay summary of patient's
condition and opportunity to listen in as patient is discussed and to ask questions
⚬ electronic family portals that allow family members to remotely access patient updates,
receive general health/illness information, and possibly message clinicians or input in‐
formation on patient values or preferences
⚬ Reference - Ann Am Thorac Soc 2017 Jun;14(6):1015
● see Communication Issues in Palliative Care for additional information

EVIDENCE SYNOPSIS

Early communication intervention by trained hospital staff may improve communica‐


tion with family, perception of quality of communication by surrogates, reduce family
depression, and reduce length of ICU stay.

STUDY
● SUMMARY
family support and communication intervention may improve surrogates' percep‐
tions of quality of communication and may shorten length of stay in intensive care
unit (ICU) in patients who die in hospital DynaMed Level 2

RANDOMIZED TRIAL: N Engl J Med 2018 Jun 21;378(25):2365


Details
⚬ based on stepped-wedge cluster randomized trial with high loss to follow-up
⚬ 5 hospitals in United States wwere randomized to time of implementation of family
support program for patients in ICUs and surrogate decision-makers at 6-month in‐

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tervals following ≥ 6 months with usual care


⚬ family support program included
– family-support pathway with daily nurse-family meetings, clinician-family meet‐
ings within 48 hours of enrollment and every 5-7 days thereafter
– advanced communication training for nurses
– implementation support by quality-improvement specialist
⚬ 1,420 patients in ICUs at high risk of death and without decision-making capacity
were enrolled
⚬ 1,106 surrogate decision makers were enrolled, and 809 surrogates (73%) complet‐
ed 6-month follow-up
⚬ primary outcome was mean score for surrogates on Hospital Anxiety and
Depression Scale (HADS) (range 0-42, with higher score indicating worse symptoms,
minimal clinically important difference 1.5 points)
⚬ other instruments used to assess outcomes in surrogates
– for symptoms of posttraumatic stress disorder, Impact of Event Scale (IES) (range
0-88, with higher scores indicating worse symptoms)
– for quality of clinician-family communication, Quality of Communication (QOC)
scale (range 0-100, with higher scores indicating better clinician-family
communication)
– for rating of patient- and family-centeredness of care, modified Patient
Perception of Patient Centeredness (PPPC) scale (range 1-4, with lower scores in‐
dicating more patient- and family-centered care)
⚬ comparing family support intervention vs. usual care in surrogates
– mean QOC score 69.1 vs. 62.7 (p = 0.001)
– mean modified PPPC score 1.7 vs. 1.8 (p = 0.006)
– mean ICU stay 4.4 days vs. 6.8 days (p = 0.001)
– mean HADS score 11.7 vs. 12 (not significant)
– mean IES score 21.2 vs. 20.3 (not significant)
⚬ Reference - PARTNER trial (N Engl J Med 2018 Jun 21;378(25):2365), editorial can be
found in N Engl J Med 2018 Jun 21;378(25):2431

STUDY
● SUMMARY
communication facilitator in ICU reduces length of ICU and hospital stays among
adults on mechanical ventilation with high risk of in-hospital death DynaMed Level 1
and may decrease family member's depression at 6 months DynaMed Level 2

RANDOMIZED TRIAL: Am J Respir Crit Care Med 2016 Jan 15;193(2):154


Details
⚬ based on randomized trial with high loss to follow-up among family members
⚬ 168 adults on mechanical ventilation in intensive care unit (ICU) with predicted hos‐
pital mortality ≥ 30% and a designated surrogate decision-maker were randomized

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to ICU communication facilitator vs. usual care


– predicted mortality ≥ 30% based on Sequential Organ Failure Assessment score ≥
6 points or other diagnostic criteria
– trained facilitators (nurse or social worker) met with family 24 hours after ICU ad‐

mission and supported communication between clinicians and family members,


adapted communication to family needs, briefed clinicians on family concerns
and communication characteristics, and mediated any conflicts
⚬ of 352 eligible family members, 268 (76%) participated and completed the following
questionnaires
– Patient Health Questionnaire (PHQ-9) to assess depression (minimal clinically im‐
portant difference [MCID] = 5 points) at baseline and at 3 and 6 months after pa‐
tient's death or ICU discharge
– Generalized Anxiety Disorder-7 at baseline and at 3 and 6 months after patient's
death or ICU discharge
– PTSD Checklist Civilian Version (PCL) at 3 and 6 months after patient's death or
ICU discharge
⚬ fewer than 50% of family members completed each questionnaire at 3- and 6-
month follow-ups
⚬ 46 patients (27.5%) died during or immediately after ICU stay
⚬ comparing intervention vs. control, no significant difference in patient mortality (in
ICU or in-hospital)
⚬ comparing decedent patients whose family had facilitator vs. those without
– mean time to withdrawal of life-sustaining treatment 7.2 days vs. 16.5 days (p =
0.001)
– mean length of ICU stay 7.7 days vs. 28.5 days (p < 0.001)
– mean length of hospital stay 8 days vs. 31.8 days (p < 0.001)
⚬ comparing families who had facilitator vs. those without
– mean change in PHQ-9 depression score
● at 3 months -1.96 points vs. +0.76 points (not significant)
● at 6 months -2.42 points vs. -0.42 points (p = 0.017)
– proportion with ≥ 5-point decrease in PHQ-9 depression score
● 25% vs. 13% at 3 months (no p value reported)
● 26% vs. 20% at 6 months (no p value reported)
⚬ no significant difference in mean change in anxiety or posttraumatic stress score at
3 or 6 months
⚬ Reference - Am J Respir Crit Care Med 2016 Jan 15;193(2):154

STUDY
● SUMMARY
intensive communication on use of advanced supportive technology may reduce
length of ICU stay and increase family consensus in adults in ICU DynaMed Level 2

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BEFORE AND AFTER STUDY: Am J Med 2000 Oct 15;109(6):469


Details
⚬ based on before-and-after study
⚬ 530 consecutive adults (mean age 59 years) in ICU were included before and after
implementation of guidance on use of advanced supportive technology
⚬ meetings discussed care plan and patients’ goals and expectations for the outcome
of critical care, and were held within 72 hours of ICU admission and when continued
advanced supportive technology did not meet patient goals
⚬ comparing intensive communication vs. standard meeting agenda
– median length of ICU stay 3 days vs. 4 days (p = 0.01)
– rate of family nonconsensus 0.09 days per patient vs. 1.7 days per patient (p <
0.001)
– survival in ICU 66% vs. 54% (p = 0.02)
⚬ Reference - Am J Med 2000 Oct 15;109(6):469

STUDY
● SUMMARY
intensive communication system with family members may not reduce length of
hospital or ICU stay in patients on mechanical ventilation in ICU DynaMed Level 2
BEFORE AND AFTER STUDY: Chest 2010 Dec;138(6):1340
Details
⚬ based on before-and-after study
⚬ 481 patients on mechanical ventilation for > 72 hours that were not expected to be
extubated or discharged from ICU within next 48 hours were included before and
after implementation of intensive communication system with family members
⚬ first family meeting was held within 5 days of ICU admission, followed by weekly
meetings
⚬ meeting agenda included medical update, values and preferences, goals of care,
treatment plan, and milestones for judging effectiveness of treatment
⚬ no significant differences in length of hospital or ICU stay
⚬ Reference - Chest 2010 Dec;138(6):1340

STUDY
● SUMMARY
compared to ICU usual care, addition of family support meetings led by palliative care
specialists may not improve family member's depression DynaMed Level 2
RANDOMIZED TRIAL: JAMA 2016 Jul 5;316(1):51
Details
⚬ based on randomized trial with unclear intention-to-treat analysis
⚬ 256 adults requiring mechanical ventilation for ≥ 7 days were randomized with their 365
family-surrogate decision-makers (mean age 51 years, 71% female) to structured family

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meetings led by palliative care specialists vs. usual care


– patients were excluded if they required mechanical ventilation due to chronic neuro‐
muscular disease, trauma, or burns
– palliative care specialists planned ≥ 2 informational and emotional support meetings;
the first and second meetings were scheduled ≥ 10 days apart, with opportunity for
additional meetings at request of family, ICU physician, or palliative care team
– control group had all family meetings managed by ICU clinicians without input of pal‐

liative care specialists


⚬ surrogates in intervention group had mean 1.4 meetings with palliative care specialists
plus 1.9 family meetings organized independently by ICU team
⚬ surrogates in control group had mean 2.1 meetings with ICU team
⚬ at 3-month follow-up, surrogates completed scales to assess distress
– Hospital Anxiety and Depression Scale (HADS, score range 0-42, with higher scores in‐
dicating worse depression; minimal clinically important difference 1.5 points)
– Impact of Events Scale-Revised (IES-R, score range 0-88 points, with higher scores in‐
dicating greater severity of posttraumatic stress symptoms)
⚬ 312 surrogates completed 3-month follow-up (85.5%)
⚬ comparing surrogates having palliative care-led meetings vs. usual care at 3-month fol‐
low-up
– adjusted mean HADS score 12.2 vs. 11. 4 (not significant)
– adjusted mean total IES-R score 25.9 vs. 21.3 (p = 0.0495)
– mean IES-R avoidance subscale score 8.8 vs. 7.1 (p = 0.048)
– mean IES-R hyperarousal subscale score 5.9 vs. 4.4 (p = 0.03)
– proportion of surrogates who met diagnostic cutoff for posttraumatic stress disorder
(IES-R score > 33) was nonsignificantly higher (34% vs. 25%, p = 0.1)
⚬ no significant differences in Quality of Communication Scale or Family Satisfaction in the
Intensive Care Unit survey scores, length of hospitalization, duration of mechanical ven‐
tilation, or patient mortality
⚬ Reference - JAMA 2016 Jul 5;316(1):51, commentary can be found in JAMA 2016 Oct
18;316(15):1597

DYNAMED COMMENTARY

High levels of communication quality and family satisfaction with ICU usual care were present at
baseline, which may have contributed to lack of effect of additional meetings; also, ICU special‐
ists were not involved in palliative care-led meetings, potentially leading to discordant or contra‐
dictory communication from healthcare providers.

STUDY
● SUMMARY

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bereavement brochure and end-of-life conference may reduce anxiety, depression and
posttraumatic stress disorder in family members of adults dying in ICU DynaMed Level 2
RANDOMIZED TRIAL: N Engl J Med 2007 Feb 1;356(5):469
Details
⚬ based on randomized trial without attention control
⚬ 126 family members (aged 46-64 years; 23% male) of adults dying in ICU were random‐
ized to bereavement brochure and end-of-life conference vs. standard care
⚬ end-of-life conference included VALUE-based guidelines: Value and appreciate what
family members said, Acknowledge family members’ emotions, Listen, ask questions
that would allow caregiver to Understand who the patient was as a person, and to Elicit
questions from family members
⚬ family members were assessed by
– Impact of Event Scale (IES, ranging from 0 to 75 points, with higher score indicating
greater severity of posttraumatic stress symptoms)
– Hospital Anxiety and Depression Scale (HADS, each subscale ranging from 0 to 21
points, with higher scores indicating worse anxiety or depression)
⚬ 108 family members (86%) were interviewed 90 days after patients' death and included
in analysis
⚬ comparing brochure and end-of-life conference vs. standard care at 90 days
– PTSD-related symptoms (> 30 points on IES scale) in 45% vs. 69% (p = 0.01, NNT 5)
– anxiety (> 8 points on HADS subscale) in 45% vs. 67% (p = 0.02, NNT 5)
– depression (> 8 points on HADS subscale) in 56% vs. 29% (p = 0.003, NNT 4)
– treatment with newly prescribed psychotropic drugs in 11% vs. 23% (p = 0.05, NNT 9)
⚬ Reference - N Engl J Med 2007 Feb 1;356(5):469

STUDY
● SUMMARY
care and communication bundle may increase identification of surrogate and offer of
social work and spiritual support for patients and/or families in ICU DynaMed Level 2

BEFORE AND AFTER STUDY: J Pain Symptom Manage 2011 Nov;42(5):668


Details
⚬ based on before-and-after study
⚬ 415 patients (mean age 70 years) in ICU for > 5 days were included before and after im‐
plementation of time-triggered care and communication bundle
⚬ care and communication bundle included
– identifying patient/family decision maker, patients' advance directive status, and car‐
diopulmonary resuscitation preferences by day 1
– offering social work and spiritual support by day 3
– offering family meeting to establish goals of care by day 5
⚬ comparing care and communication bundle vs. standard care
– identification of medical decision maker in 52% vs. 40% (p = 0.02)

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–offer of social work support in 60% vs. 22% (p < 0.001)


– offer of spiritual support to patients and/or families in 45% vs. 35% (p = 0.05)
– determination of advance directive status in 75% vs. 85% (p = 0.003)
⚬ Reference - J Pain Symptom Manage 2011 Nov;42(5):668

STUDY
● SUMMARY
brief training intervention for ICU staff on conducting family meetings may improve
family satisfaction with frequency of communication and honesty of information pro‐
vided DynaMed Level 2
BEFORE AND AFTER STUDY: Crit Care Med 2014 Feb;42(2):265
Details
⚬ based on before-and-after trial
⚬ 147 family members of ICU patients were assessed for satisfaction with critical care ex‐
perience before and after implementation of communication training for ICU physicians
and other hospital staff (including intensivists, residents, nurses, social workers, chap‐
lains, case managers, pharmacists, and respiratory therapists)
– training included review of SPIKES (Setting, Perception, Invitation or Information,
Knowledge, Empathy, and Summarize or Strategize) communication framework and
comments outlining positive and negative communication experiences from families
of patients who had received care at that particular ICU, an exercise simulating a fam‐
ily meeting, and self-assessment debrief of simulation
– family members were mailed surveys 1-2 months after patient ICU discharge or death
and included relatives of ICU patients admitted before and after training
● response rate 12.3% pre intervention and 15.3% post intervention
● respondents completed Family Satisfaction in the ICU 24 (FS-ICU 24) survey (score
range on each item 0-100, with higher scores indicating greater family satisfaction
with ICU care and communication)
⚬ comparing mean FS-ICU 24 scores before vs. after intervention
– frequency of communication with ICU nurses 79.2 vs. 87.2 (p = 0.04)
– frequency of communication with ICU doctors 67.9 vs. 76.7 (p = 0.04)
– honesty of information provided about family member's condition 77.8 vs. 87.1 (p =
0.01)
– no significant differences in ease of getting information, understanding of informa‐
tion, completeness of information, consistency of information
⚬ Reference - Crit Care Med 2014 Feb;42(2):265

DYNAMED COMMENTARY

Low response rate to surveys may have contributed to lack of effect. Family members satisfied
with communication may be more likely to respond than unsatisfied family members.

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STUDY
● SUMMARY
family satisfaction with physician communication reported to be higher when physi‐
cians spend more time listening and less time talking
CROSS-SECTIONAL STUDY: Crit Care Med 2004 Jul;32(7):1484
Details
⚬ based on cross-sectional study
⚬ 214 family members involved in 51 separate family conferences in the ICU completed
surveys on satisfaction with communication during conference
– survey included 4 questions on family satisfaction with physician communication and
1 question on family perception of conflict between family and physician
– family conferences involved discussions of withdrawal or withholding of life-sustain‐
ing therapy or delivery of bad news
– all conferences were recorded, assessed for proportion of family vs. clinician speech,
and coded for number of empathic statements (explicit acknowledgement by physi‐
cian of family member's emotion or internal state)
⚬ 169 family members (76%) returned satisfaction survey, accounting for 45 conferences
(90%)
⚬ mean conference time was 32 minutes; mean proportion of family speech 29%
⚬ higher proportion of family speech vs. clinician speech during conference associated
with
– increased family satisfaction on all 4 survey items measuring satisfaction with com‐
munication (Spearman rank correlation 0.41, 95% CI 0.15-0.68)
– decreased family perception of conflict with clinician (Spearman rank correlation
-0.31, 95% CI -0.57 to -0.05)
⚬ no significant difference in family satisfaction based on duration of conference
⚬ Reference - Crit Care Med 2004 Jul;32(7):1484, editorial can be found in Crit Care Med
2004 Jul;32(7):1609

STUDY
● SUMMARY
nearly one-third of conferences between physician and surrogate decision-maker in‐
volving treatment decisions for critically ill adults in ICU reported to include no discus‐
sion of patient values or preferences
CROSS-SECTIONAL STUDY: Crit Care Med 2015 Apr;43(4):757
Details
⚬ based on cross-sectional study
⚬ 71 audio-recorded conferences in ICU between clinicians and surrogate decision-maker
that involved discussions of life-sustaining treatment decisions for an adult patient were
analyzed for discussions of patient's previously expressed preferences
– all patients lacked decision-making capacity and were at a high risk of death
– conferences occurred mean 10 days into ICU stay

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⚬ discussions of patient preferences were


– never discussed by either physician or surrogate in 30%
– first raised by the clinicians in 38%
– first raised by the surrogate decision-maker in 32%
⚬ Reference - Crit Care Med 2015 Apr;43(4):757, editorial can be found in Crit Care Med
2015 Apr;43(4):909

Decision Support Tools

● validated decision support tools such as decision aids may be implemented for family
members to optimize quality of communication, medical comprehension, and reduce fami‐
ly decisional conflict (SCCM Grade 2D) (Crit Care Med 2017 Jan;45(1):103)

EVIDENCE SYNOPSIS

Individualized decision aid may decrease physician-surrogate discordance and reduce


length of intensive care unit (ICU) stay, but Web-based aid my not improve prognostic
concordance between clinicians and surrogates, reduce psychological distress among
surrogates, or alter clinical outcomes.

STUDY
● SUMMARY
decision aid for surrogates of adults with prolonged mechanical ventilation may de‐
crease physician-surrogate discordance and reduce length of intensive care unit
stay DynaMed Level 2
RANDOMIZED TRIAL: Crit Care Med 2012 Aug;40(8):2327
Details
⚬ based on small nonrandomized trial
⚬ 27 surrogate decision makers of 27 adults on mechanical ventilation for ≥ 10 days
were given decision aid tool vs. standard care
⚬ decision aid addressed
– providing medical information relevant to critical illness
– eliciting surrogates' understanding of patient values
– surrogates' role preferences
– guiding deliberation
⚬ assessments included
– physician-surrogate discordance (ranging from 0 points [maximal concordance]
to 100 points [maximal discordance])
– physician-surrogate communication by Quality of Communication (QOC) scale,
(ranging from 0 points [worst] to 10 points [best])

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– surrogates' understanding of diagnosis, prognosis, and treatments by medical


comprehension scale (ranging from 0 points [poor comprehension] to 12 points
[excellent comprehension])
– decisional uncertainty by decisional conflict scale (ranging from 0 points [more

uncertainty] to 16 points [less uncertainty])


⚬ comparing decision aid vs. standard care
– physician-surrogate discordance scores for expected 1-year patient survival 7
points vs. 43 points (p = 0.001)
– length of ICU stay 28 days vs. 48 days (p = 0.08)
– higher medical comprehension scores 11.4 points vs. 6.1 points (p = 0.001)
– decisional conflict scale scores 0.2 points vs. 0.9 points (p = 0.004)
– quality of communication scores 8.7 points vs. 8.4 points (p = 0.03)
⚬ no significant differences in length of hospital stay, hospital mortality, or disposition
⚬ Reference - Crit Care Med 2012 Aug;40(8):2327, commentary can be found in Crit
Care Med 2012 Aug;40(8):2505

STUDY
● SUMMARY
Web-based decision aid for surrogates of adults with prolonged mechanical ventila‐
tion does not improve prognostic concordance between clinicians and surrogates,
reduce psychological distress among surrogates, or alter clinical outcomes
DynaMed Level 1

RANDOMIZED TRIAL: Ann Intern Med 2019 Jan 29. doi: 10.7326/M18-2335.
Details
⚬ based on randomized trial
⚬ 416 surrogates of 277 adults receiving prolonged mechanical ventilation were ran‐
domized to Web-based decision aid vs. standard care practices followed by family
meeting
⚬ Web-based decision aid was designed to support surrogates and clinicians in shared
decision-making process for provision of prolonged mechanical ventilation by high‐
lighting options and risks, identifying uncertainty, and clarifying health-related
values
⚬ no significant differences in concordance on 1-year survival estimates between clini‐
cians and surrogates, psychological distress or decisional conflict among surrogates,
length of mechanical ventilation or hospital stay, or mortality
⚬ Reference - Ann Intern Med 2019 Jan 29. doi: 10.7326/M18-2335.

STUDY
● SUMMARY
video decision support tool may improve knowledge of cardiopulmonary resuscita‐
tion (CPR) by surrogate decision makers for critically ill adults in ICU DynaMed Level 2
BEFORE AND AFTER STUDY: J Palliat Med 2012 Dec;15(12):1382
Details

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⚬ based on before-and-after study


⚬ 50 surrogate decision makers for adults aged > 50 years old in ICU were included
before and after implementation of 3-minute video decision support tool about CPR
⚬ knowledge about CPR was assessed by questionnaire (ranging from 0 to 4 points,
with higher score indicating greater knowledge)
⚬ comparing 3-minute video decision support tool vs. standard care
– CPR knowledge questionnaire score 2.9 vs. 2 points pre intervention (p = 0.008)
– full code in 59% vs. 78% (not significant)
– do-not-resuscitate order in 41% vs. 22% (not significant)
⚬ Reference - J Palliat Med 2012 Dec;15(12):1382

DYNAMED COMMENTARY

It is unclear if improved knowledge about CPR will impact surrogate decision making about
code status as the study above was not powered to detect a difference in this outcome.

Intensive Care Unit Diaries

● intensive care unit (ICU) diaries may be implemented to reduce family member anxiety, de‐
pression, and posttraumatic stress (SCCM Grade 2C) (Crit Care Med 2017 Jan;45(1):103)
● ICU diaries for patients

STUDY
⚬ SUMMARY
intensive care diaries may reduce new-onset posttraumatic stress disorder in pa‐
tients following discharge from ICU DynaMed Level 2
RANDOMIZED TRIAL: Crit Care 2010;14(5):R168
Details
– based on randomized trial without intention-to-treat analysis
– 352 adults aged 18-82 years (64% male) in ICU ≥ 72 hours and on mechanical ventila‐
tion for ≥ 24 hours were randomized to ICU diary outlining details of ICU stay 1 month
after discharge as soon as they wanted vs. 3 months after discharge
– ICU diary was daily record of patients’ ICU stay, written in everyday language by
healthcare staff and accompanied by photographs
– follow-up 3 months after discharge
– posttraumatic stress disorder (PTSD) was assessed by posttraumatic diagnostic scale
– new-onset PTSD in 5% with ICU diary vs. 13% without ICU diary (p = 0.02, NNT 13)
– no significant differences in PTSD-related symptoms
– Reference - Crit Care 2010;14(5):R168

● ICU diaries for family members

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STUDY
⚬ SUMMARY
intensive care unit diaries reported not to reduce posttraumatic stress disorder in
family members of patients in ICU DynaMed Level 3
UNCONTROLLED TRIAL: Aust Crit Care 2018 Nov;31(6):382
Details
– based on uncontrolled trial
– 60 family members of patients in ICU > 48 hours were given ICU diary for daily entry
for 3 months
– 36 family members (60%) completed ICU diary
– no significant association between diary use and posttraumatic stress disorder
– Reference - Aust Crit Care 2018 Nov;31(6):382

DYNAMED COMMENTARY

High dropout rate may affect the accuracy of the conclusion since family members with post‐
traumatic stress disorder may have been less likely to complete the diaries.

Conflict Between Patient/Family and Clinician


● American Thoracic Society/American Association of Critical Care Nurses/European Society
of Intensive Care Medicine/Society of Critical Care Medicine (ATS/AACN/ACCP/ESICM/SCCM)
policy statement on responding to requests for potentially inappropriate treatments in the
intensive care unit (ICU)
⚬ institutions should implement strategies to prevent treatment conflicts from becoming
intractable, including proactive communication and early involvement of expert
consultants
– once a conflict becomes intractable, remaining resolution strategies are likely to be
protracted and burdensome to all parties
– most conflicts arise from communication breakdowns rather than intractable value
conflicts and can be resolved through ongoing communication, expert consultation,
and/or ethics or palliative care consultation
– make efforts to improve advance care planning as a way to prevent disputes (see
Advance Care Planning and Directives for additional information)
⚬ in the cases in which conflicts remain intractable despite intensive communication and
negotiation, follow 7-step process-based approach to conflict resolution
– enlist expert consultation to aid in achieving a negotiated agreement
● redouble efforts to reach negotiated agreement with surrogates
● seek assistance of consultants skilled in mediation and conflict resolution

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– notify surrogates of the procedural conflict-resolution mechanism, verbally and in


writing, and invite them to participate in the process
– obtain a second medical opinion from an independent clinician with expertise in pa‐
tient's condition
– request review by an interdisciplinary hospital committee whose members are not di‐
rectly involved in patient's care or in prior mediation efforts
● confirm whether or not the treating clinician's claim that the requested treatment
is inappropriate represents a broadly held clinical judgment
● provide the committee's conclusion, including their rationale, in writing to all
parties
● offer opportunity for all parties to discuss decision with committee
– if the committee agrees with the clinicians assessment that the therapy or care is in‐
appropriate, offer to seek a willing provider at another institution and facilitate the
transfer process
– if the committee agrees with the clinicians regarding the inappropriateness of the
therapy or care being requested and no willing provider can be found, inform surro‐
gates of their right to seek case review by an independent appeals body through judi‐
cial review
– if the committee or appellate body agrees with the patient or surrogate's request for
life-prolonging treatment, clinicians should provide these treatments or transfer the
patient to a willing provider
– if the committee agrees with the clinician's judgements, no willing provider can be

found, and the surrogate does not seek independent appeal or the appeal affirms the
clinician’s position, clinicians may withhold or withdraw the contested treatments and
provide high-quality palliative care
⚬ Reference - Am J Respir Crit Care Med 2015 Jun 1;191(11):1318
● use of "no escalation of care" or "no escalation of therapy" to curb burden of absolute
withdrawal or withholding of treatment
⚬ NEOT consists of withholding new therapies while continuing current therapies, and rep‐
resents an initial step in end-of-life care
⚬ non-escalation of "therapy" (NEOT) may be preferred term over "care" as use of the lat‐
ter phrase may in inadvertently convey that care for the patient is not being provided
⚬ NEOT is considered a bridge from full life-sustaining therapy to "comfort measures," and
may represent an initial step in redirecting goals from curative to palliative intent
⚬ NEOT may involve sequential or selective withholding of life-sustaining therapies, such
as
– mechanical ventilation
– vasopressors
– blood transfusions
– hemodialysis

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– antibiotics
– nutrition/hydration
⚬ Reference - Intensive Care Med 2014 Sep;40(9):1372, Crit Care Med 2014 Feb;42(2):357
● conflict impact on physician and emotional stress considerations
⚬ there is a need to support the clinician coping with emotional stress associated with ICU
setting, which may include depression, burnout, conflict among disciplines, and moral
distress (Crit Care Med 2014 Nov;42(11):2418)
⚬ stress may result from knowledge that clinician's presentation of information to family
and/or patient effects end-of-life decisions for family members and fear of personal bi‐
ases that may ultimately affect these decisions (N Engl J Med 2003 Sep 18;349(12):1109)
⚬ stress may result from disagreements with family members (for example, view on life-
preserving measures, providing "futile" care) (Clin Invest Med 2010 Aug 1;33(4):E240)
⚬ stress resulting from fear of litigation
– families may use legal system to challenge physician's recommendations on
treatment
– courts may rule in favor of families and reject physician's medical opinion
– if agreement with families cannot be made, physicians may seek legal advice if con‐
cerns remain about their obligations
– Reference - Clin Invest Med 2010 Aug 1;33(4):E240
⚬ stress may be mitigated by
– family meetings (which may include close friends, social workers, and clergy mem‐
bers) and provision of facts and extensive listening, incorporating patients' wishes (N
Engl J Med 2003 Sep 18;349(12):1109)
– local meetings with other clinicians, revised work assignments, case-based rounds,
and informal debriefing (N Engl J Med 2014 Jun 26;370(26):2506)
– bereavement counseling designed for clinicians to increase awareness of vicarious
traumatization and help to devise professional/personal coping strategies (N Engl J
Med 2014 Jun 26;370(26):2506)
⚬ for additional considerations including proactive communication and early involvement
of expert consultants (such as ethics or palliative care consultation) and 7-step process-
based approach to conflict resolution, see ATS/AACN/ACCP/ESICM/SCCM policy
statement
● considerations for substitute decision makers (SDMs) and potential discord regarding
treatment decisions
⚬ substitute decision makers (SDMs) acting on behalf of patients who are unable to act for
themselves (due to various reasons such as altered level of consciousness) may have dif‐
fering points of view from the treating clinician about a patient's best interest
⚬ SDMs may make decisions based on what they would like for the patient, and may not
reflect what the patient would want for themselves

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⚬ sources of discordance may be from differing beliefs and values, differing experiences
and knowledge bases, and unique relationships with patient
⚬ References - Clin Invest Med 2010 Aug 1;33(4):E240, J Gen Intern Med 2001
May;16(5):283, J Intensive Care Soc 2016 Aug;17(3):244
● response to inappropriate wishes or treatments
⚬ physicians must consider their patients' best interest and consider their ethical, profes‐
sional, and legal obligations to their patients
⚬ ethical principles including beneficence, nonmaleficence, and autonomy should guide
interactions with family members/substitute decision makers (SDMs)
⚬ poor communication often cited as source of conflict with clinicians and SDMs; im‐
proved communication may result from development of trusting relationship and steps
to improve dialogue
⚬ examples of inappropriate treatments may include
– using valuable and limited resources (such as excessive blood products) in a patient
who has no chance of survival
– performing hemodialysis in a dying patient with multiple comorbidities
⚬ References - Clin Invest Med 2010 Aug 1;33(4):E240, J Gen Intern Med 2001
May;16(5):283, J Intensive Care Soc 2016 Aug;17(3):244
⚬ see ATS/AACN/ACCP/ESICM/SCCM policy statement for additional considerations regard‐
ing conflict resolution
● refusing potentially inappropriate therapies in time-pressured situations
⚬ for cases in which treatments are requested when the clinical condition of a patient is
rapidly declining (making conflict-resolution process impractical), and the clinician has
high degree of certainty the treatments are outside of acceptable practice, factors to
consider include
– efforts to carry out as much of the conflict resolution process as practical
– assurance that the facts are clear and "moral blind spots" have been checked
– seeking consensus from other clinicians regarding the refusal
– using empathy to help explain to surrogates the reason for refusal of treatment, with
goal of reaching decision that is acceptable to both parties
⚬ example may include a surrogate requesting to use extracorporeal membrane oxygena‐
tion (ECMO) in a critically ill, frail patient with multiple comorbidities on maximum circu‐
latory support
⚬ Reference - Am J Respir Crit Care Med 2015 Jun 1;191(11):1318
● conscientious objection
⚬ conscientious objection (CO) occurs when a clinician has a moral objection to providing
an established medical service or information about a medical service which is consid‐
ered legal and professionally accepted

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⚬ COs in ICU setting should be handled via institutional mechanisms as opposed to clini‐
cians when necessary; institutions should have policies to encourage prospective man‐
agement of anticipated COs and to provide definitive process for management of unan‐
ticipated COs
⚬ institutions should accommodate COs in ICU setting provided that the
– accommodation does not impede patient's or surrogate's access to medical services
and/or information
– accommodation does not generate undue hardships for the institution or other
clinicians
– CO is not based on invidious discrimination
⚬ a clinician's CO to giving potentially futile or inappropriate medical services should not
be the sole reason to forgo the treatment against the objections of the surrogate or pa‐
tient; such disputes should undergo fair process-based mechanism for resolution
⚬ clinicians may seek personal exemption from providing service though institutional CO
management process
⚬ institutions should encourage a moral dialogue that acknowledges differing values and
openness in a way that reduces moral distress
⚬ Reference - Am J Respir Crit Care Med 2015 Jan 15;191(2):219
● presence of hospital policy on medical futility is reported to help diffuse conflict between
family members and healthcare team
⚬ steps to successful diffusion of conflict include
– mediation between physician and family
– consultation and possible adjudication by ethics committee
⚬ malpractice suits reported to be more likely if physician acts unilaterally, but rarely suc‐
cessful if physician practices within institutional futility policies and practice guidelines
⚬ Reference - Ann Acad Med Singapore 2011 Jan;40(1):19

STUDY
● SUMMARY
ethics consultation may reduce length of hospital stay, length of ICU stay, and length of
ventilation in ICU patients with value-related treatment conflicts during treatment
DynaMed Level 2

RANDOMIZED TRIAL: JAMA 2003 Sep 3;290(9):1166


Details
⚬ based on randomized trial with low adherence
⚬ 551 patients (mean age 67 years) or surrogates and/or their physicians and nurses with
value-related treatment conflicts during treatment in ICU were randomized to being of‐
fered an ethics consultation vs. standard care (control group)
⚬ ethics consultation addressed at a minimum
– relevant medical factors
– patient's known or inferred values and preferences

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– quality of life considerations


⚬ 24% in intervention group did not have ethics consultation
⚬ 28% in control group had ethics consultation (all patients in control group were assured
that anyone could request an ethics consultation at any time)
⚬ 60% in-hospital mortality overall; no significant differences between groups
⚬ comparing ethics consultation vs. standard care among patients who did not survive un‐
til discharge
– mean length of hospital stay 8.7 days vs. 11.6 days (p = 0.01)
– mean length of ICU stay 6.4 days vs. 7.9 days (p = 0.03)
– mean length of mechanical ventilation 6.5 days vs. 8.2 days (p = 0.03)
⚬ no significant differences in length of hospital stay, ICU stay, ventilation, or days receiv‐
ing hydration/nutrition among patients who survived until discharge
⚬ Reference - JAMA 2003 Sep 3;290(9):1166

Decision-Making

Recommendations from Professional Organizations

● Scottish Intercollegiate Guidelines Network (SIGN) recommendations on care of deteriorat‐


ing patients
⚬ work with all patients at risk for clinical deterioration and their family to develop antici‐
patory care plans (ACPs) and/or treatment escalation plans (TEPs), and ensure that plans
are accessible to all care providers (SIGN Conditional recommendation)
– ACPs often include decisions about when and under what circumstances to consider
● escalation to critical care
● hospital admission
● treatment options, such as, palliative care, cardiopulmonary resuscitation, and oth‐
er interventions based on the patient's clinical situation; cardiopulmonary resusci‐
tation should not be the only focus
– in situations where the risks and benefits of certain therapies are unclear, TEPs can
include
● interventions that may be beneficial to patients who either
⚬ present to acute care services, or
⚬ experience clinical deterioration while receiving acute care
● medical assessment of patient's suitability for advanced therapy if further deterio‐
ration occurs
⚬ in patients with changing clinical status, review TEPs regularly (SIGN Best practice)
⚬ Reference - SIGN 167 2023 Jun PDF

Assessment of Decisional Capacity

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● several cognitive abilities, including attention, orientation, and memory, are necessary for
higher-level cognitive processes such as making an informed consent decision
⚬ patients whose cognition has been determined to be impaired by brief screening tests
may warrant further capacity assessment
⚬ cognitive screening tests alone are not sufficient to evaluate decision-making capacity
⚬ Reference - Psychiatry Clin Neurosci 2015 Aug;69(8):462
● ability to communicate reportedly easiest element of capacity to assess; assessment of pa‐
tient's understanding and ability to reason may require additional probing
⚬ decisions that follow from patient's individual situation, integrating their values and the
information provided, demonstrate patient's ability to reason
⚬ patient's failure to answer specific questions about risks and alternative treatments may
call capacity into question
⚬ Reference - JAMA 2011 Jul 27;306(4):420
● capacity evaluation should be conducted in the context of a specific treatment decision by
a clinician who is fully knowledgeable about the available treatment options, including the
potential risks, benefits, and alternatives (JAMA 2011 Jul 27;306(4):420)
● steps in conducting a capacity evaluation
⚬ explain the purpose of the examination and the importance of its outcome for the
patient
⚬ review and explain information with the patient as needed
⚬ explain the options in simple language, avoiding medical jargon and using the patient's
own words if possible
⚬ consider patient to have decision-making capacity if patient can
– understand information about proposed tests or treatments
– appreciate their individual medical situation and demonstrate ability to incorporate
personal values into decision-making process
– use reason throughout decision-making process and explain rationale
– communicate their choice
⚬ document detailed and contemporaneous notes explaining how capacity was assessed
⚬ Reference - JAMA 2011 Jul 27;306(4):420, Age Ageing 2016 May;45(3):334, Psychiatry Clin
Neurosci 2015 Aug;69(8):462, Neurol Clin 2011 Feb;29(1):115
● tools available for standardizing determination of capacity include
⚬ Aid to Capacity Evaluation (ACE)
– standardized training scenario followed by questions about patient's own situation
– 8 questions assess understanding of the problem, treatment proposed, treatment al‐
ternatives, option to refuse treatment, possible consequences of the decision, and
the effect of an underlying mental disorder on decision
– objective scoring of responses
– 10-20 minutes to complete

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⚬ Hopkins Competency Assessment Test (HCAT)


– 4-paragraph essay available at 3 reading levels
– followed by 6 objectively scored questions
– 10 minutes to complete
⚬ Understanding Treatment Disclosure (UTD)
– 5-paragraph scenario (written and oral) related to schizophrenia, major depression,
or ischemic heart disease
– followed by 10 questions that assess understanding
– < 30 minutes to complete
⚬ Reference - JAMA 2011 Jul 27;306(4):420, Neurol Clin 2011 Feb;29(1):115
● capacity may be decision-specific, so a patient who lacks capacity to make a decision about
a complex or high-risk intervention may still retain capacity to make autonomous decisions
about future, lower-risk procedures (JAMA 2011 Jul 27;306(4):420, Psychiatry Clin Neurosci
2015 Aug;69(8):462)
● capacity may be time-specific and may vary from hour to hour (Age Ageing 2016
May;45(3):334)
● if patient is initially determined to lack capacity and decision is not emergent
⚬ consider later reevaluation using alternative methods of communication
– shorten and simplify the information provided
– use alternative methods of communication, such as visual aids
⚬ treat potentially remedial conditions that can affect cognition or ability to communicate
in an effort to optimize capacity, such as
– medication-related effects
– metabolic abnormalities
– hematological abnormalities, such as anemia or hyperviscosity
– changes in oxygenation
– uremia
– hepatic encephalopathy
– uncontrolled pain
– emotional and psychological factors, such as depression or anxiety
⚬ Reference - Age Ageing 2016 May;45(3):334, JAMA 2011 Jul 27;306(4):420
● be wary of determining incapacity in patients who are not proficient in the language used
to explain their options (JAMA 2011 Jul 27;306(4):420)
● in cases of a problematic therapeutic relationship, consider referring patient to another
provider (JAMA 2011 Jul 27;306(4):420)
● if patient lacks decision-making capacity, attain patient assent (simple approval) as well as
consent from healthcare proxy, using advance directive (if available) as a guide (Psychiatry

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Clin Neurosci 2015 Aug;69(8):462)


● 3 levels of treatment decision complexity based on the likelihood and seriousness of po‐
tential outcomes have been proposed when assessing capacity
⚬ treatments for acute, life-threatening conditions that are generally beneficial or that
have few or no alternative options
– such treatment decisions often must be made quickly, with patients requiring imme‐
diate treatment
– patient assent and awareness (consciousness) may be considered to be sufficient for
treatment to commence
– this lower threshold for capacity invokes beneficence and is based on expectation
that such treatment is in patient's best interest
⚬ treatments for chronic illness that are higher-risk or have less certain benefit or for
which alternative treatment options are available
– patient must demonstrate capacity in order to give informed consent
– patients must understand that they have a choice in the matter
⚬ decisions to forgo life-sustaining therapies
– patient must demonstrate most stringent standard of capacity, including appreciation
for the gravity of situation and implications of decision
– capacity for such decisions must be both technical and personal as well as both cog‐
nitive and affective
⚬ Reference - Psychiatry Clin Neurosci 2015 Aug;69(8):462, JAMA 1984 Aug 17;252(7):925

Advance Care Planning and Directives

● when a patient is determined to lack capacity to make treatment decisions, care plans
should conform to patient's preferences based on oral or written advance care plans (Ann
Intern Med 2012 Jan 3;156(1 Pt 2):73), commentary can be found in JAMA 2016 Sep
27;316(12):1318
● advanced care planning documentation has limitations
⚬ there is a lack of standardized location for documentation of advance care planning in
written or electronic medical records; clinicians should understand local practice con‐
ventions (Chest 2017 Jun;151(6):1387)
⚬ two-thirds of adults in United States do not have advance care planning documentation
(Neurocrit Care 2015 Aug;23(1):131)
⚬ existing advance care documents may not cover every possible situation (Neurocrit Care
2015 Aug;23(1):131)
⚬ for advance care planning, document
– description of patient's diagnosis, disease progression, and prognosis
– general description of patient's values, goals, and concerns

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– specific patient preferences for life-sustaining treatments, hospitalization, and/or hos‐


pice care
– identification of healthcare power of attorney
– completed physician order for life-sustaining treatment (POLST) form or other code-
status orders
– duration of advance care planning discussion time in minutes
– Reference - Chest 2017 Jun;151(6):1387
⚬ additional considerations
– storage of advance care planning documentation can vary widely
– completed documents can be difficult to find when needed
– advance care plans can evolve over time leading to inconsistent practices regarding
documentation of updates
– Reference - Am J Hosp Palliat Care 2018 Aug;35(8):1123
● in the United States, the Patient Self-Determination Act (PSDA) of 1990 requires all institu‐
tions receiving federal funding to offer information about advance care planning, including
⚬ informing adult patients of their right to choose or refuse any medical or surgical
treatment
⚬ asking whether they have completed an advance directive (and offering assistance in
completing one, if not)
⚬ providing public education about advance care planning
⚬ Reference - AACN Adv Crit Care 2012 Jan;23(1):99
● see Ethical and Legal Issues in Palliative Care and Advance Care Planning and Directives for
additional information

STUDY
● SUMMARY
interventions to promote advance care planning in intensive care unit may not reduce
length of hospital or intensive care unit stay DynaMed Level 2
SYSTEMATIC REVIEW: Crit Care 2016 Apr 9;20:97
Details
⚬ based on systematic review of mostly observational studies
⚬ systematic review of 19 studies (5 randomized trials and 14 prospective cohort studies)
comparing structured communication interventions to promote advance care planning
vs. usual care among adults admitted to intensive care unit (ICU) and their surrogate de‐
cision-makers
⚬ structured communication interventions in ICU aimed at assessing patient preferences
and/or assisting surrogate decision-makers included team-led intensive communication
strategies, ethics consultations, palliative care consultations, written decision aids, video
decision aids, and multifaceted ICU quality improvement intervention
⚬ comparing structured communication interventions to usual care
– no significant differences in

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● length of hospitalization in analysis of 6 observational studies with 1,244 patients,


results limited by significant heterogeneity
● length of ICU stay in analyses of
⚬ 2 trials with 351 patients and 3 trials with 729 patients who did not survive to
ICU discharge
⚬ 8 observational studies with 1,824 patients, results limited by significant
heterogeneity
● proportion of patients with documented code status in 2 trials with 295 adults and
4 observational studies with 895 adults
– mixed results for
● family satisfaction with end-of-life care
⚬ no significant difference in 1 cluster-randomized trial with 1,079 patients
⚬ increased satisfaction with communication intervention in 1 observational study
with 227 patients
● rate of withholding or withdrawal from life-sustaining treatment (LST)
⚬ no significant differences in analysis of 2 trials with 351 adults
⚬ increased withdrawal from LST with communication intervention in analysis of 6
observational studies with 3,727 patients
– risk ratio 1.54 (95% CI 1.2-1.98)
– results limited by significant heterogeneity
● proportion of patients with documented or reported goals of care discussions
⚬ increased proportion of patients and/or family members having documented
goals of care discussions with communication intervention in analysis of 4 ob‐
servational studies with 1,229 adults
– risk ratio 3.47 (95% CI 1.55-7.75), results limited by significant heterogeneity
– NNT 1-8, with goals of care discussions in 25% of usual care group
⚬ decreased proportion of patients and/or family members having documented
goals of care discussions with communication intervention in 1 cluster random‐
ized trial with 1,079 patients (risk ratio [RR] 0.82, 95% CI 0.75-0.9)
⚬ Reference - Crit Care 2016 Apr 9;20:97

STUDY
● SUMMARY
prior advance care planning may modestly reduce decisional conflict among surrogate
decision-makers making end-of-life treatment decisions DynaMed Level 2

COHORT STUDY: Ann Am Thorac Soc 2015 Oct;12(10):1528


Details
⚬ based on prospective cohort study
⚬ 471 adult surrogate decision-makers for 251 seriously ill, incapacitated patients were as‐
sessed for prior advance care planning and level of decisional conflict

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– patients had acute respiratory distress syndrome, lacked decision-making capacity,


required mechanical ventilation, and had ≥ 50% risk of hospital mortality or long-term
and severe functional impairment
– surrogates reported whether they had prior discussions with patient about patient's
end-of-life treatment preferences and were assessed by research nurse with
Decisional Conflict Scale (DCS) following family goals-of-care meeting
⚬ 468 surrogates (99%) responded to question about previous advance care planning, of
whom 57% reported they had previously engaged in advance care planning with patient
⚬ 446 surrogates (95%) completed all questions needed to compute DCS
⚬ DCS score < 25 indicated low conflict, 25-37.5 indicated moderate conflict, and > 37.6 in‐
dicated high conflict
⚬ comparing surrogates who reported completing advance care planning vs. those who
did not, mean DCS 19.5 vs. 24.3 (p = 0.001)
⚬ in multivariate analysis, prior advance care planning associated with change in DCS
score of -3.31 points (p = 0.04)
⚬ Reference - Ann Am Thorac Soc 2015 Oct;12(10):1528, commentary can be found in Ann
Am Thorac Soc 2015 Oct;12(10):1432

Determining Surrogate Decision Maker


● most intensive care unit patients depend on family or other surrogate for decision-
making 3
● in United States, most states have enacted default surrogate consent statutes
⚬ in cases where a patient lacks capacity but no surrogate has been appointed, default
surrogate consent statutes identify a surrogate decision-maker and provide legal au‐
thority for surrogate healthcare decision-making without need for judicial guardianship
proceedings
⚬ in general, 2 types of surrogate consent laws exist
– hierarchy surrogate consent laws identify surrogate based on family relationships and
kinships, with person most likely to be closest to the patient typically becoming the
designated surrogate
● priority list outlines potential surrogates in descending order (giving primary priori‐
ty to spouse and then most commonly followed by adult child or parent)
● majority of states with surrogate consent laws have adopted hierarchy surrogate
consent laws
– consensus surrogate consent laws require all reasonably "interested persons" to reach
consensus about who should act as the surrogate decision-maker
● as of 2014, only 2 states (Colorado and Hawaii) had adopted consensus surrogate
consent laws
⚬ Reference - Bifocal 2014 Sep-Oct;36(1):10 PDF

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● American Bar Association (ABA) overview of default surrogate consent statutes by state can
be found at ABA 2018 Jan PDF
● many jurisdictions in the United States are reported to make distinction between authority
of patient-designated surrogate and state-appointed next of kin in making decisions about
withholding or withdrawing life-sustaining treatments
⚬ in 36 states and District of Columbia, durable healthcare power of attorney is reported
to have the authority to forgo or withdraw life-sustaining treatments on a patient's be‐
half if the decision is supported by patient's advance directive or living will
⚬ in 12 states (Colorado, Connecticut, Delaware, Florida, Hawaii, Indiana, Nebraska, New
Hampshire, New Jersey, North Dakota, Pennsylvania, and Wyoming), healthcare power
of attorney can withhold or withdraw life-sustaining treatment for an incapacitated pa‐
tient without an advance directive or living will that addresses the specific clinical
situation
⚬ in 2 states (Arkansas and Ohio), healthcare power of attorney reported to require physi‐
cian certification of patient being terminally ill or permanently unconscious before ad‐
vance directive becomes operative and life-sustaining treatment can be withdrawn
⚬ Reference - J Intensive Care Med 2014 Mar;29(2):71
● if patient preferences are not known, treatment decisions should be based on the best evi‐
dence of what patient's preferences would be
⚬ evidence may include consideration of patient's values, previous choices, and beliefs
⚬ failing that, treatment decisions may be based on determination of the patient's best
interests
⚬ Reference - Ann Intern Med 2012 Jan 3;156(1 Pt 2):73, commentary can be found in JAMA
2016 Sep 27;316(12):1318
● clinician has the duty to ensure that the surrogate's decisions are consistent with patient
preferences and best interests
⚬ emphasize to surrogates that decisions should be based on what the patient would
choose, not what surrogates would want for themselves
⚬ consider involving ethics committee in difficult situations
⚬ consider initiating legal proceeding if necessary to determine best interests of patient,
such as establishing guardianship for patient without capacity and no designed surro‐
gate decision-maker, to resolve conflicts when other processes have failed or to ensure
legal compliance
⚬ Reference - Ann Intern Med 2012 Jan 3;156(1 Pt 2):73, commentary can be found in JAMA
2016 Sep 27;316(12):1318
● see also Ethical and Legal Issues in Palliative Care

Shared Decision-Making
● awareness of surrogates' perspectives may aid intensive care unit (ICU) clinicians in ad‐
dressing concerns and needs and facilitate effective shared decision-making 3

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⚬ most surrogates reported to prefer timely discussion of prognosis for emotional and
practical preparation for the possibility that the patient could die 3
⚬ surrogates prefer to discuss expected outcomes, even with the understanding that
there is uncertainty about prognosis 3
● surrogates may respond to unfavorable prognosis with intrapersonal tensions, which may
lead to 3
⚬ focusing on details instead of bigger picture
⚬ rejection of prognosis
⚬ reliance on personal instincts or beliefs
● communication strategies may include 3
⚬ maximizing family-centered communications, providing support for families, and incor‐
porating active listening
⚬ helping surrogates "plan for the worst" and "hope for the best"
⚬ expressing empathy
⚬ exploring family concerns
⚬ adequate listening time
⚬ assuring that patient will not be abandoned or allowed to suffer should life-sustaining
treatment be withdrawn
⚬ support for critical decisions made by family members, such as whether patient would
want to limit or continue life-sustaining therapies
● decision-making may lead to conflict between patient/family and clinician
● American College of Critical Care Medicine/American Thoracic Society (ACCM/ATS) policy
statement on shared decision-making in ICUs
⚬ shared decision-making should be used to define overall goals of care and when making
major treatment decisions that may be influenced by personal values, goals, and prefer‐
ences, such as
– treatment with decompressive hemicraniectomy vs. medical treatment in patient with
severe stroke and cerebral swelling
– pursuing ongoing weaning efforts at ventilator facility vs. transition to palliative thera‐
py for patient with advanced chronic obstructive pulmonary disease (COPD) who has
failed several attempts at ventilator weaning in the ICU
– deciding if patient’s quality of life is sufficiently satisfying that they would want life-
sustaining treatment when life-threatening event occurs
⚬ additional considerations for shared decision-making approach
– patients/surrogates should not be involved in making routine decisions such as how
often to check vital signs and laboratory tests, which fluids to administer, which an‐
tibiotics to use and at what dose
– someone on treatment team should explain why and what care is being given in
terms understandable to patient and family

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– clinician should emphasize that patient and family are welcome to ask questions
⚬ default shared decision-making strategy
– "default" approach to shared decision-making includes active input from clinician and
patient/surrogate at each of 3 stages
● information exchange, such as
⚬ treatment options with risks and benefits
⚬ patient values, goals, and preferences
⚬ patient's prior actions and decisions, which may aid in determining what patient
might prefer in current situation
● deliberation, such as
⚬ sharing opinions
⚬ asking questions
⚬ correcting misconceptions
⚬ explaining one's perspectives about why one option is preferable
⚬ exploring other person’s perceptions
● making treatment decision
– modify default approach based on individual case and patient/surrogate needs and
preferences
⚬ tailor decision-making models to meet needs of patient/surrogate, including
– surrogate decides independently
– surrogate decides after considering physician's recommendation
– shared responsibility for decision-making
– physician decides after considering family’s opinion
– physician decides independently
⚬ communication skills to create partnerships with patients and/or surrogates in treat‐
ment decisions include
– establishing trusting partnership with surrogate
– providing emotional support
– assessing surrogates' understanding of situation
– explaining patient's medical condition and prognosis
– highlighting that there is a choice
– explaining principles of surrogate decision-making
– assessing patient's/surrogate's role preference
– explaining treatment options
– eliciting patient's values, goals, and preferences
– deliberating with patients and surrogates
– making a decision
⚬ Reference - Crit Care Med 2016 Jan;44(1):188

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● see Communication Issues in Palliative Care for additional information

STUDY
● SUMMARY
85% of surrogates prefer shared decision-making for patients in the ICU
COHORT STUDY: Intensive Care Med 2003 Jan;29(1):75
Details
⚬ based on prospective cohort study
⚬ 789 surrogates of patients in an ICU being mechanically ventilated > 48 hours in Canada
were assessed by questionnaire
⚬ decision-making preferences
– 39.1% preferred shared responsibility with physician
– 23.8% preferred physician to make final decision after considering surrogate's
opinion
– 21.8% preferred to make decision after considering physician's opinion
– 14.8% preferred physician to make all decisions
– 0.5% preferred making decision alone
⚬ Reference - Intensive Care Med 2003 Jan;29(1):75

STUDY
● SUMMARY
passive decision-making preference may be associated with anxiety and depression in
family members of patients in the ICU
COHORT STUDY: J Crit Care 2009 Jun;24(2):249
Details
⚬ based on cohort study
⚬ 48 family members of patients in the ICU > 48 hours in Pennsylvania were assessed by
Control Preferences Scale and Hospital Anxiety and Depression Scale
⚬ decision-making preferences
– 12 patients preferred active role
– 28 preferred shared role
– 8 preferred passive role
⚬ comparing active vs. shared vs. passive role
– anxiety in 42% vs. 25% vs. 88% (p = 0.007 across groups)
– depression in 8% vs. 11% vs. 50% (p = 0.026 across groups)
⚬ Reference - J Crit Care 2009 Jun;24(2):249

Methods to Aid in Patient Communication


● speech language pathologists can help patient communicate and assist communication
through alternative methods, including 1
⚬ alphabet number boards

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⚬ electronic speech-generating devices


⚬ touch screen requiring minimal physical pressure to activate message buttons
● methods to improve communication for patients requiring prolonged mechanical
ventilation
⚬ in patients that start to tolerate spontaneous breathing trials with tracheostomy masks,
one way speaking valves can be used to allow vocalization and enhanced swallowing
⚬ in patients that fail to wean
– in-line speaking valve may be considered
– volume compensation leak speech is potential alternative
⚬ Reference - Respir Care 2012 Jun;57(6):889
● augmentive and alternative communication (AAC)

STUDY
⚬ SUMMARY
eye-tracking computer reported to increase ability to communicate, but increase
frustration, in adults in intensive care unit DynaMed Level 3

UNCONTROLLED TRIAL: Surgery 2016 Mar;159(3):938


Details
– based on uncontrolled trial
– 12 adults (mean age 55 years) in intensive care unit had 5 45-minute sessions on eye-
tracking computer
– eye-tracking computer enables patient to dwell on text or symbols and then gener‐
ates speech, and allows user access to internet
– outcomes with eye-tracking computer
● 6 patients were able to use keyboard-guided user interface to write full sentences
● 3 patents were able to use social media
● 6 patients reported increase in frustration
– Reference - Surgery 2016 Mar;159(3):938

STUDY
⚬ SUMMARY
text-to-speech software reported to aid in communication in patients on mechanical
ventilation in intensive care unit DynaMed Level 3
CASE SERIES: Rehabil Nurs 2015 Jul;40(4):235
Details
– based on case series
– 20 adults (mean age 67 years) on mechanical ventilation in intensive care unit were
provided with text-to-speech software
– following extubation, 19 patients reported software was helpful for communication
– Reference - Rehabil Nurs 2015 Jul;40(4):235

● communication board

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STUDY
⚬ SUMMARY
communication boards may increase ease of communication compared to standard
communication in adults on mechanical ventilation in intensive care unit
DynaMed Level 2

RANDOMIZED TRIAL: Iran J Nurs Midwifery Res 2018 Sep;23(5):358


Details
– based on small quasi-randomized trial
– 30 adults (mean age 45 years) on mechanical ventilation in intensive care unit were
randomized to communication board vs. standard communication methods
– communication board had illustrations of patient needs on front, and picture of a
body and whiteboard on back
– ease of communication was assessed by Ease of Communication Scale (ECS) (ranging
from 0 to 24 points, with higher score indicating greater difficulty in communicating)
– mean ECS score 5.73 points with communication board vs. 14.8 points with standard
communication methods (p < 0.001)
– Reference - Iran J Nurs Midwifery Res 2018 Sep;23(5):358

STUDY
⚬ SUMMARY
illustrated materials may improve patient communication with medical staff in adults
on mechanical ventilation in intensive care unit DynaMed Level 2

RANDOMIZED TRIAL: Int J Nurs Pract 2014 Oct;20(5):490


Details
– based on nonrandomized trial
– 90 adults who had open heart surgery and were on mechanical ventilation were pro‐
vided with illustrated material for patient communication or had standard
communication
– illustrated material had 15 illustrations and "yes" and "no" on front, and a human
body, numerical pain evaluation scale, and alphabet on back
– comparing illustrated material vs. standard care
● difficulties in communicating with medical staff in 49% vs. 80% (p < 0.0001)
● communicating method of medical staff considered appropriate in 42% vs. 20% (p
= 0.023)
– Reference - Int J Nurs Pract 2014 Oct;20(5):490

● electrolarynx

STUDY
⚬ SUMMARY
electrolarynx reported to improve communication in 53% of adults on mechanical
ventilation in intensive care unit DynaMed Level 3

UNCONTROLLED TRIAL: Intensive Care Med 2015 Mar;41(3):547


Details

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– based on uncontrolled trial


– 15 patients (mean age 57 years) on mechanical ventilation in intensive care unit used
electrolarynx while communicating
– 13 patients were orally intubated and 2 ventilated through tracheostomy
– patients, family, and medical staff each scored communication abilities
– outcomes with electrolarynx
● ability to speak in 6 patients
● improved lipreading in 2 patients
– Reference - Intensive Care Med 2015 Mar;41(3):547

● in-line speaking valve

STUDY
⚬ SUMMARY
early cuff deflation and in-line speaking valve insertion may reduce time to return of
voice compared to standard cuff deflation and speaking valve during self-ventilation
in adults with tracheostomy and unable to speak in intensive care unit DynaMed Level 2

RANDOMIZED TRIAL: Crit Care Med 2016 Jun;44(6):1075


Details
– based on small randomized trial
– 30 critically ill adults in intensive care unit with air-filled cuff tracheostomy and unable
to speak for ≥ 48 hours were randomized to early cuff deflation and in-line speaking
valve insertion vs. standard cuff deflation and speaking valve during self-ventilation
– 4 patients died before reaching return to phonation (ability to count from 1 to 10)
– return to phonation in median 7 days with in-line speaking valve vs. 18 days with
standard cuff deflation (p = 0.001)
– no significant differences in time to decannulation, duration of ventilation, time to
oral intake, or length of ICU or hospital stay
– Reference - Crit Care Med 2016 Jun;44(6):1075, commentary can be found in Crit Care
Med 2016 Jun;44(6):1234

STUDY
⚬ SUMMARY
in-line speaking valve may decrease time to verbal communication in patients with
tracheostomy for prolonged mechanical ventilation in cardiothoracic intensive care
unit DynaMed Level 2

BEFORE AND AFTER STUDY: J Crit Care 2015 Jun;30(3):491


Details
– based on before-and-after study
– 129 patients (mean age 59 years, 75% male) with tracheostomy for prolonged me‐
chanical ventilation in cardiothoracic ICU were included before and after implementa‐
tion of in-line tracheostomy speaking valves

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– time to establish verbal communication 9 days with in-line speaking valve vs. 18 days
without in-line speaking valve (p = 0.029)
– no significant differences in intubation duration or time to decannulation
– Reference - J Crit Care 2015 Jun;30(3):491

Symptom Assessment

Assessment Scales
● communicative patients can report their symptoms verbally (by stating answers) or non‐
verbally (by pointing to numbers, words, or diagrams) 1
● in communicative patients
⚬ general assessment tools in communicative patients include 1
– Numeric Rating Scale (NRS)
● used to assess pain, thirst, dry mouth, or dyspnea
● ranges from 0 to 10 points with higher number indicating worse symptoms
● horizontal, visually enlarged laminated NRS most useful for pain assessment in pa‐
tients in intensive care unit
– visual analog scale (VAS)
● used to assess pain or dyspnea
● 0- to 10-cm scale, with higher score indicating worse symptoms
● can be difficult for patients to understand and use
⚬ multidimensional assessment tools measuring pain, dyspnea, and psychological symp‐
toms include 1
– condensed Memorial Symptom Assessment Scale - questionnaire including 11 items
rating symptom frequency and 3 items rating symptom severity (condensed
Memorial Symptom Assessment Scale PDF )
– Edmonton Symptom Assessment System - questionnaire including 9 items rating
symptom severity (Edmonton Symptom Assessment System PDF )
● in noncommunicative patients, behavioral symptom assessment by
⚬ Critical-Care Pain Observation Tool (CPOT)
– pain assessment for adults on ventilator using nonverbal indicators
– total score range 0 (no pain) to 8 (severe pain)
– patient does not need to be conscious to have pain assessed

Table 1: Critical Care Pain Observation Tool

Indicator Description Score

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Indicator Description Score

Facial expression Relaxed/neutral 0


- no muscular
tension
observed

Tense - frown‐ 1
ing, brow lower‐
ing, orbit tight‐
ening, levator
contraction

Grimacing - 2
tense expres‐
sion (see above)
plus eyelids
tightly closed

Body movement No movements 0


(but this does
not necessarily
indicate no pain)

Protective move‐ 1
ments - slow,
cautious move‐
ments, touching
or rubbing
painful site,
seeking atten‐
tion through
movements

Restlessness - 2
pulling tube, at‐
tempting to sit
up, moving
limbs, thrashing,
not following
commands,

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Indicator Description Score

striking staff, try‐


ing to climb out
of bed

Muscle tension (via passive flexion Relaxed - no re‐ 0


and extension of upper extremities) sistance to pas‐
sive movements

Tense/rigid - 1
some resistance
to passive
movements

Very tense/rigid 2
- strong resis‐
tance to passive
movements, in‐
cluding inability
to complete
them

Ventilator com‐ Ventilator com‐ Tolerating venti‐ 0


pliance OR pliance (for intu‐ lator or move‐
vocalization bated patients) ment - no active
alarms, easy
ventilation

Coughing but 1
tolerating; venti‐
lator alarms
stop
spontaneously

Fighting ventila‐ 2
tor - asynchrony,
blocking ventila‐
tion, frequent
alarms

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Indicator Description Score

Vocalization (for Normal talking 0


extubated or no
patients) vocalization

Sighing or 1
moaning

Crying out or 2
sobbing

– Reference - Am J Crit Care 2006 Jul;15(4):420


⚬ Behavioral Pain Scale (BPS)
– pain assessment using nonverbal indicators for adults who are critically ill, sedated,
and mechanical ventilated
– total score range 3 (no pain) to 12 (severe pain)

Table 2: Behavioral Pain Scale

Indicator Description Score

Facial expressions Relaxed 1

Partially tightened (such 2


as brow lowering)

Fully tightened (such as 3


closed eyelids)

Grimacing 4

Upper limb movement No movement 1

Partially bent 2

Fully bent with finger 3


flexion

Permanently retracted 4

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Indicator Description Score

Ventilation compliance Tolerating movement 1

Coughing but tolerating 2


ventilation

Fighting ventilator 3

Unable to control 4
ventilation

– Reference - Crit Care Med 2001 Dec;29(12):2258, commentary can be found in Acta
Anaesthesiol Scand 2016 Jul;60(6):821

STUDY
⚬ SUMMARY
Critical Care Pain Observation Tool (CPOT) with cutoff ≥ 2 points appears to have
moderate performance for detecting pain in adults receiving ICU care DynaMed Level 2
SYSTEMATIC REVIEW: J Pain Symptom Manage 2020 Jun 13 early online
Details
– based on systematic review of studies with methodologic limitations
– systematic review of 25 studies evaluating Critical-Care Pain Observation Tool (CPOT)
in 1,920 adults receiving ICU care
– reference standard was self-report of yes/no to presence of pain in 24 studies, and 1
used a visual analogue or numeric rating system pain scale
– most studies were limited by lack of random or consecutive patient selection, many
had unclear blinding of outcome assessors to reference test results, and some had
unclear time intervals between tests
– pooled diagnostic performance of CPOT
● with cutoff of ≥ 2 points in analysis of 11 studies
⚬ sensitivity 81% (95% CI 74%-87%)
⚬ specificity 75% (95% CI 67%-81%)
⚬ diagnostic odds ratio 13.06 (95% CI 9.85-17.3)
● with cutoff ≥ 3 points in analysis of 14 studies
⚬ sensitivity 76% (95% CI 64%-85%)
⚬ specificity 79% (95% CI 73%-84%)
⚬ diagnostic odds ratio 10.71 (95% CI6.55-17.49)
● during potentially painful procedures in analysis of 21 studies
⚬ sensitivity 79% (95% CI 72%-84%)
⚬ specificity 77% (95% CI 70%-82%)

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⚬ diagnostic odds ratio 11.52 (95% CI 7.42-17.87)


● during non-painful procedures or at rest in analysis of 7 studies
⚬ sensitivity 68% (95% CI 51%-81%)
⚬ specificity 82% (95% CI 73%-88%)
⚬ diagnostic odds ratio 9.14 (95% CI 5.38%-15.53%)
– Reference - J Pain Symptom Manage 2020 Jun 13 early online

STUDY
⚬ SUMMARY
Critical Care Pain Observation Tool (CPOT) and Behavioral Pain Scale (BPS) each ap‐
pear to help indicate increases in pain among conscious and unconscious patients
during nursing care in ICU setting DynaMed Level 2

DIAGNOSTIC COHORT STUDY: J Intensive Care 2016;4:68


Details
– based on diagnostic cohort study with reference test not applied to all patients
– 101 adults admitted to ICU (41 conscious and 60 unconscious) were assessed with
Critical Care Pain Observation Tool (CPOT) and Behavior Pain Scale (BPS) each for 1
minute before, during, and 20 minutes after nursing procedures during 3 days of ICU
admission
– CPOT scores significantly increased during nursing procedures among conscious (p <
0.0001) and unconscious patients (p < 0.0001); consistent results for BPS (indicates
criteria validity)
– visual analogue scale pain score also used in 41 conscious patients and was reference
standard for performance analysis
– diagnostic performance of tools for pain assessment during nursing procedures
● CPOT with cutoff ≥ 2
⚬ sensitivity 76.5%
⚬ specificity 70.8%
⚬ area under curve 0.8
● BPS with cutoff ≥ 5
⚬ sensitivity 62.8%
⚬ specificity 91.7%
⚬ area under curve 0.83
● combined BPS and CPOT scores
⚬ sensitivity 80.4%
⚬ specificity 75%
⚬ area under curve 0.84
– diagnostic performance of tools for pain assessment overall (before, during, and after
nursing procedures)
● CPOT with cutoff ≥ 2

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⚬ sensitivity 48.5%
⚬ specificity 88.2%
⚬ area under curve 0.7
● BPS with cutoff ≥ 5
⚬ sensitivity 84.8%
⚬ specificity 52.3%
⚬ area under curve 0.76
● combined BPS and CPOT scores
⚬ sensitivity 50.5%
⚬ specificity 89%
⚬area under curve 0.74
– Reference - J Intensive Care 2016;4:68

STUDY
⚬ SUMMARY
Behavioral Pain Scale (BPS) and Critical Care Pain Observation Tool (CPOT) each ap‐
pear to have higher inter-rater reliability and consistency compared to Non-Verbal
Pain Scale (NVPS) for pain assessment in critically ill adults unable to self-report
DynaMed Level 2

DIAGNOSTIC COHORT STUDY: Crit Care 2014 Jul 25;18(5):R160


Details
– based on small diagnostic cohort study
– 30 critically ill adults unable to self (mean age 67 years; 63% female) were evaluated
by both ICU nurse and researcher with Behavioral Pain Scale (BPS), Critical Care Pain
Observation Tool (CPOT), and Non-Verbal Pain Scale (NVPS) before, during, and 10
minutes after routine care procedures for total 258 paired assessments
– 43% of patients were lightly sedated, 57% of patients had delirium, and 63% had me‐
chanical ventilation
– tests were evaluated for
● inter-rater reliability (kappa coefficient ≥ 0.8 considered "near perfect" agreement
among observers, 0.6 indicating "important" agreement, and 0.4 "moderate"
agreement)
● internal consistency (Cronbach-alpha > 0.7 indicates satisfactory consistency)
● discriminant validation/responsiveness, which was determined by comparing total
scores during different situations/stimuli (effect size ≥ 0.8 is large [best responsive‐
ness], 0.5 is moderate, and < 0.2 is small)
● feasibility with nurse questionnaire for preference, accuracy, and ease of learning
of each scale (each item rated 0 [worst] to 10 [best])
– inter-rater reliability for each tool (total score)
● 0.71 for NVPS
● 0.81 for BPS (p < 0.05 compared to NVPS)

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● 0.81 for CPOT (p < 0.05 compared to NVPS), consistent results for face domain
compared to NVPS
– BPS upper limb score had higher inter-rater reliability 0.61 compared to CPOT body
movement score (0.42) and muscle tension (0.43), p < 0.05 for each comparison to
BPS
– higher internal consistency reported for BPS (0.8) and CPOT (0.81) each compared to
NVPS (0.76); p ≤ 0.01 for each comparison to NVPS
– each tool demonstrated discriminant validation with significantly increased scores
comparing baseline, before, and after scores to scores during procedures; effect sizes
for responsiveness were (no significant difference among scores)
● 0.9 for BPS
● 0.86 for CPOT
● 0.92 for NVPS
– median feasibility scores for all 3 tools was 7-8
– Reference - Crit Care 2014 Jul 25;18(5):R160

STUDY
⚬ SUMMARY
Behavioral Pain Scale (BPS) and Critical Care Pain Observation Tool (CPOT) each ap‐
pear valid for assessing pain in nonverbal adults requiring mechanical ventilation in
ICU DynaMed Level 2
DIAGNOSTIC COHORT STUDY: AACN Adv Crit Care 2016 Apr;27(2):162
Details
– based on diagnostic cohort study with baseline differences
– 47 nonverbal adults (mean age 55 years; 43% female) requiring mechanical ventila‐
tion in ICU were evaluated with 3 pain assessment tools by researcher and nurse be‐
fore, during, and after turning and suctioning
– tools included Behavioral Pain Scale (BPS), Critical Care Pain Observation Tool (CPOT),
and adult Nonverbal Pain Scale (NVPS)
– responsiveness of each tool to pain characterized by effect sizes (increasing size indi‐
cating better responsiveness) calculated by finding difference in mean score at rest
and score during painful procedure, then dividing the difference by the standard de‐
viation at rest (effect size < 0.2 is small, near 0.5 is moderate, and large > 0.8)
– baseline assessment performed within 24 hours of intubation in 15% of patients, dur‐
ing first 24-48 hours in 21%, and > 48 hours after mechanical ventilation in 64%
– each tool was valid and reliable with Cronbach values > 0.85 each
– effect sizes for responsiveness to pain for
● BPS > 1 by researcher and nurse rating for turning and suctioning each
● CPOT > 1.2 by researcher and nurse rating for suctioning, and 0.77 and 0.79 for
turning
– NVPS had inconsistent psychometric properties, with small effect sizes for physiologic
(effect size by nurse rating 0.4) and respiratory (effect size 0.2) criteria during suction‐

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ing procedure; consistent results for researcher ratings


– Reference - AACN Adv Crit Care 2016 Apr;27(2):162
● for additional symptom assessment tools, see
⚬ Pain Management in Palliative Care
⚬ Dyspnea and Stridor in Palliative Care Patients
⚬ Anxiety in Palliative Care Patients
⚬ Depression in Palliative Care Patients

Proxy Symptom Assessment


● proxy symptom assessment 1
⚬ controversial as proxies may rank symptoms higher or lower than patients themselves
⚬ may be useful for trending symptoms of distress over time

STUDY
● SUMMARY
proxies may overestimate symptoms in seriously ill adults in intensive care unit
COHORT STUDY: Crit Care Med 2012 Oct;40(10):2760
Details
⚬ based on prospective cohort study
⚬ 245 seriously ill adults in intensive care unit reported intensity and distress of 10
symptoms
⚬ reporters (243 family members, 104 nurses, and 92 physicians) rated presence of symp‐
tom, and if present, its intensity and distress (range 1-3 points with higher score indicat‐
ing increased intensity/distress)
⚬ symptom intensity scores

Relationships Between Symptom Intensity Scores Among Reporters

Symptom Mean Mean Mean Mean


Intensity Intensity Intensity Intensity
Score Score Score Score
Reported by Reported by Reported by Reported by
Patient Family Nurse Physician
Member

Pain 0.74 points 1.03 points 0.99 points 0.94 points*

Restlessness 0.89 points 0.94 points 0.7 points 0.87 points*

Sadness 0.54 points 0.93 points 0.66 points 0.88


points**

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Symptom Mean Mean Mean Mean


Intensity Intensity Intensity Intensity
Score Score Score Score
Reported by Reported by Reported by Reported by
Patient Family Nurse Physician
Member

Fear 0.65 points 1.3 points 1.15 points 1.28


points**

Confusion 0.36 points 0.86 points 0.85 points 1.14


points**

* p < 0.05; no pairwise comparisons reported.

** p < 0.005; no pairwise comparisons reported.

⚬ no significant differences in intensity rating of tiredness, shortness of breath, anxiety,


hunger, and thirst across groups
⚬ symptom distress scores

Relationships Between Symptom Distress Scores Among Reporters

Symptom Mean Mean Mean Mean


Distress Distress Distress Distress
Score Score Score Score
Reported by Reported by Reported by Reported by
Patient Family Nurse Physician
Member

Pain 0.99 points 1.22 points 1.27 points 1.16 points*

Tiredness 1.34 points 1.49 points 1.22 points 1.19 points*

Restlessness 0.93 points 1.14 points 0.86 points 1 point*

Sadness 0.61 points 1.05 points 0.8 points 1.04 points*

Fear 0.85 points 1.5 points 1.31 points 1.63


points**

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Symptom Mean Mean Mean Mean


Distress Distress Distress Distress
Score Score Score Score
Reported by Reported by Reported by Reported by
Patient Family Nurse Physician
Member

Confusion 0.5 points 0.99 points 0.86 points 1.13


points**

* p < 0.05; no pairwise comparisons reported.

** p < 0.001; no pairwise comparisons reported.

⚬ no significant differences in distress rating of shortness of breath, anxiety, hunger, and


thirst across groups
⚬ Reference - Crit Care Med 2012 Oct;40(10):2760, commentary can be found in Crit Care
Med 2012 Oct;40(10):2899

Clinician Experience and Judgement


● using clinician experience and judgment to identify possible sources of distress 1
⚬ clinician can try to determine symptom by addressing it appropriately, such as analgesic
for pain or opioid for dyspnea
⚬ if symptom-related behavior persists, increasing opioid or analgesic dose suggested
⚬ if symptom-related behavior decreases, scheduled opioid or analgesics suggested

Assessment of Specific Symptoms

Pain

● in communicative patients, quantitative scales for patient-reported pain include 1


⚬ Numeric Rating Scale (NRS)
⚬ visual analog scale (VAS)
⚬ McGill Pain Questionnaire - Short Form (MPQ-SF) - scale with 11 sensory words such as
sharp and throbbing, and 4 affective words such as fearful and sickening (MPQ-SF PDF
)
● in nonverbal but communicative patients, symptom word lists or helping a patient localize
pain on body outline diagrams may be helpful for identifying painful area 1
● in noncommunicative patients, approaches for assessment of pain 1
⚬ behavioral symptom assessment by
– Critical Pain Observation Tool

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● pain assessment for adults on ventilator using nonverbal indicators


● patient does not need to be conscious to have pain assessed
● total score range 0 (no pain) to 8 (severe pain)
– Behavior Pain Scale
● pain assessment using nonverbal indicators for adults who are critically ill, sedat‐
ed, and mechanical ventilated
● total score range 3 (no pain) to 12 (severe pain)
⚬ proxy symptom assessment
⚬ using clinician experience and judgment to identify possible sources of distress and as‐
sessing patient response to trial of opioids
● see Pain Management in Palliative Care for more information on assessment of pain
Dyspnea

● in communicative patients, questionnaires suggested for assessment of dyspnea 1


⚬ questionnaires focused on functional limitation due to dyspnea
– Numeric Rating Scale (NRS)
– visual analog scale (VAS)
⚬ multidimensional questionnaires measuring pain, dyspnea, and psychological
symptoms
– condensed Memorial Symptom Assessment Scale - questionnaire including 11 items
rating symptom frequency and 3 items rating symptom severity (condensed
Memorial Symptom Assessment Scale PDF )
– Edmonton Symptom Assessment System - questionnaire including 9 items rating
symptom severity (Edmonton Symptom Assessment System PDF )
● in noncommunicative patients, approaches for assessment of dyspnea include 1
⚬ behavioral symptom assessment by Respiratory Distress Observation Scale (RDOS) -
consists of 8-item scale scoring behavioral signs of dyspnea with 0-2 points each, with
higher score indicating worse dyspnea (RDOS PDF )
⚬ proxy symptom assessment
⚬ using clinician experience and judgment to identify possible sources of distress and as‐
sess patient response to trial of opioids
● see Dyspnea and Stridor in Palliative Care Patients for details

EVIDENCE SYNOPSIS

RDOS is suggested for use in noncommunicative patients, but may have low sensitivity
and specificity for detection of dyspnea in 2 diagnostic cohort studies assessing validi‐
ty in communicative palliative care patients.

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STUDY
● SUMMARY
RDOS may have low sensitivity and moderate specificity for detection of dyspnea in
communicative adults in palliative care DynaMed Level 2

DIAGNOSTIC COHORT STUDY: J Pain Symptom Manage 2019 Feb;57(2):304


Details
⚬ based on diagnostic cohort study with patient sample not representative of patients
in whom testing would be appropriate
⚬ 122 communicative palliative care adults at risk for dyspnea were assessed by RDOS
⚬ underlying conditions included lung or pleural malignancies, end stage renal failure,
heart failure, or chronic obstructive pulmonary disease
⚬ prevalence of dyspnea by self-report (reference standard)
– 29.5% mild dyspnea
– 36.9% moderate dyspnea
– 15.6% severe dyspnea
⚬ for detection of dyspnea, RDOS with cutoff ≥ 4 had
– sensitivity 76.6%
– specificity 86.2%
– positive predictive value 86%
– negative predictive value 76.9%
⚬ Reference - J Pain Symptom Manage 2019 Feb;57(2):304

STUDY
● SUMMARY
intensive care respiratory distress observation scale (IC-RDOS) may have low sensi‐
tivity and specificity for detection of dyspnea in communicative adults in the inten‐
sive care unit DynaMed Level 2

DIAGNOSTIC COHORT STUDY: Anesthesiology 2015 Oct;123(4):830


Details
⚬ based on diagnostic cohort study with patient sample not representative of patients
in whom testing would be appropriate
⚬ derivation cohort included 120 communicative intensive care unit patients
⚬ validation cohort included 100 similar patients
⚬ prevalence of dyspnea by dyspnea visual analog scale (D-VAS) was 57% in derivation
cohort and 47% in validation cohort
⚬ IC-RDOS was derived from factors correlating with D-VAS (10-point scale with higher
score indicating worse dyspnea)
– starting score 3.3 points
– + (heart rate [beats/minute])/65 points
– + 1 point each for presence of neck muscle use during inspiration, abdominal
paradox during inspiration, or facial expression of fear

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– - 1 point each for absence of neck muscle use during inspiration, abdominal para‐
dox during inspiration, or facial expression of fear
– + 0.7 points for supplemental oxygen use
– - 0.7 points for absence of supplemental oxygen
⚬ diagnostic performance of IC-RDOS with cutoff ≥ 2.4 for prediction of D-VAS ≥ 4
points
– sensitivity 72%
– specificity 72%
⚬ Reference - Anesthesiology 2015 Oct;123(4):830

Thirst and Xerostomia

● regular thirst assessments suggested in patients who can self-report 1


⚬ in communicative patients, Numeric Rating Scale (NRS) may be used to assess thirst 1
⚬ mouth and tongue may be examined for dryness and cracking or infection 1
⚬ risk factors for thirst, such as nothing by mouth status, and treatment with anticholiner‐
gic medications or opioids should be assessed 1
⚬ assuming patient is thirsty is acceptable 1

STUDY
● SUMMARY
treatment with serotonin reuptake inhibitors, higher dose of opioids, and higher dose of
furosemide may be associated with increased frequency of thirst in adults in intensive
care unit
COHORT STUDY: J Pain Symptom Manage 2015 Mar;49(3):530
Details
⚬ based on cohort study
⚬ 353 adults (mean age 56 years) in intensive care unit who could self-report thirst were
included
⚬ 71% were thirsty
⚬ factors associated with increased frequency of thirst
– serotonin reuptake inhibitors (odds ratio [OR] 2.635, 95% CI 1.007-6.892)
– higher dose of opioids in morphine equivalents (OR 2.002, 95% CI 1.348-2.975)
– higher dose of furosemide (OR 1.394, 95% CI 1.018-1.909)
⚬ Reference - J Pain Symptom Manage 2015 Mar;49(3):530

Anxiety

● assessment of patients for anxiety may include 5


⚬ asking patient "are you anxious," "worried," or "scared"
⚬ Faces Anxiety Scale suggested for patients who cannot speak or write
– 5 caricature faces graded from no anxiety to severe anxiety

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– Faces Anxiety Scale can be found in J Adv Nurs 2003 Jan;41(1):73


● nonspecific signs and symptoms associated with anxiety include 5
⚬ restlessness
⚬ trembling
⚬ cold hands
⚬ diaphoresis
⚬ tachycardia
Delirium

● screening patients twice per day suggested for early detection and treatment of delirium 5
● assessment tools for adults that can also be used for patients on mechanical ventilation
include 5
⚬ Confusion Assessment Method - intensive care unit (CAM-ICU) - 4-item questionnaire
with ≥ 3 features positive indicating high risk of delirium (Vanderbilt ICU Delirium and
Cognitive Impairment Study Group )
⚬ Intensive Care Delirium Screening Checklist (ICDSC) - ranges from 0 to 8 points with sub‐
syndromal delirium defined as score of 1-3 points and delirium as score ≥ 4 points
(Vanderbilt ICU Delirium and Cognitive Impairment Study Group )
● see Delirium in Palliative Care Patients and Delirium in the Intensive Care Unit (ICU) for ad‐
ditional information

Assessment of Clinical Deterioration


● clinical deterioration in patients with acute illness may be identified by clinicians, care‐
givers, or from full or partial physiological observations
● Scottish Intercollegiate Guidelines Network (SIGN) recommendations on care of deteriorat‐
ing patients
⚬ record physiological observations at admission, initial assessment, and according to
specified monitoring plan established by staff with knowledge of which observations
should be taken and how often, and when urgent clinical guidance is warranted
⚬ observations typically include
– pulse and respiratory rate
– systolic blood pressure
– level of consciousness or new confusion
– oxygen saturation including percentage and flow rate of administered oxygen
therapy
– temperature

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– additional monitoring that may be needed to recognize deterioration may include


● biochemical analysis, such as, blood glucose or lactate
● hydration status
● urine output
● pain levels
⚬ transcribe and chart observations electronically in accord with institutional protocols
and ensure availability of paper-based systems to safeguard against technological fail‐
ures (SIGN Conditional recommendation)
⚬ when an established deterioration threshold is met, consider using an automated esca‐
lation of care protocol in addition to other communication methods (SIGN Conditional
recommendation)
⚬ consider use of early warning observation systems to monitor patients in acute care and
other settings (SIGN Conditional recommendation)
⚬ in patients with clinical deterioration and suspicion of sepsis, consider symptom severity
in conjunction with clinical assessment, speed of deterioration, likely diagnosis, immune
status, and signs of organ dysfunction (see also Sepsis Treatment in Adults)
⚬ Reference - SIGN 167 2023 Jun PDF

Management of Specific Symptoms

Pain
● avoid allowing pain or distressing symptoms to persist in physiologically unstable patients
for the purpose of helping maintain blood pressure and/or stimulate respiratory effort 1
● opioids are primary medication to manage pain in patients in intensive care unit (ICU) 1
⚬ short-acting opioids (remifentanil and sufentanil) may each be considered to decrease
duration of procedural pain, mechanical ventilation, and length of ICU stay
⚬ methadone has several limitations
– may have unpredictable pharmacokinetics and pharmacodynamics in opioid-naive
patients
– careful monitoring of patient’s Q-T interval (corrected) of electrocardiographic tracing
suggested
⚬ fentanyl analogues do not cause dose and rate-related histamine release,
⚬ opioid-related constipation is common and may be prevented with stimulant or osmotic
laxative, in absence of contraindications such as small bowel obstruction or diarrhea
⚬ dosing
– consider risk/benefit ratio when selecting dosing regimen
– no maximum dose or duration of effect
– dose should be individualized
– appropriate dose should adequately relieve pain without unacceptable adverse
events

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⚬ administration
– rapid titration of opioids with incremental IV doses suggested as initial therapy
– slowing rate of IV administration of other opioids can limit histamine release
⚬ in patients with renal failure, electrolyte disturbances, and dehydration, opioids may
cause neuroexcitatory effects, such as myoclonus
– does not typically interfere with pain control, especially when mild
– alternating to lower dose of other opioid may reduce myoclonus within 24 hours
– fentanyl may be alternative
⚬ fentanyl may distribute in fat, prolonging opioid effects
⚬ in patients with liver failure
– fentanyl may be preferred, although half-life is prolonged with repeated or high
doses
– longer dosing intervals may be needed in patients with end-stage liver disease
⚬ in patients with renal failure
– opioids associated with complex drug absorption, metabolism, and renal clearance
– codeine and morphine not recommended
– use hydromorphone with caution
– fentanyl and methadone considered relatively safe but not removed by dialysis
● nonopioid analgesics (administered orally or by IV) may be used in intensive care unit in
conjunction with opioids for pain relief and to reduce opioid dose 1
⚬ acetaminophen IV - has been shown to be safe and effective adjunct to opioids after
general and cardiac surgery, but may not be necessary unless enteral administration is
contraindicated
⚬ ketamine IV
– may be used to prevent or reduce opioid tolerance, especially if ongoing pain despite
treatment with opioids
– subanesthetic doses may be used to reduce opioid dose
– adverse events include dysphoria, nightmares, and hallucinations, especially at higher
doses
⚬ nefopam IV mainly used in Europe
⚬ cyclooxygenase inhibitors orally, IV, or rectally, but limited by adverse effects
⚬ gabapentin and carbamazepine suggested for patients with neuropathic pain
⚬ newer drugs with limited evidence include pregabalin, lamotrigine, oxcarbazepine, du‐
loxetine, venlafaxine in critically ill patients
● combination of nonopioids with opioids may reduce quantity of opioids administered and
opioid-related side effects 1
● nonopioid analgesics should be used with caution to prevent drug-specific adverse events 1

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● limited evidence available for nonpharmacologic interventions, but massage, music thera‐
py, and relaxation techniques may be considered 1
● see Analgesia, Sedation, and Use of Paralytics in the Intensive Care Unit and Pain
Management in Palliative Care for additional information

Dyspnea
● nonpharmacologic management of dyspnea may include 1
⚬ optimal positioning
– suggested whenever patient reports dyspnea or respiratory distress
– usually upright with arms elevated and supported (by pillows or on bedside table)
– increases pulmonary volume capacity
– increases air exchange which may improve oxygenation, carbon dioxide clearance,
and reduce inspiratory effort
⚬ balancing rest with activity
– space nursing care to allow periods of rest
– guided by dyspnea/respiratory distress
– decreases excessive oxygen consumption caused by activity
– prevents hypoxemia
⚬ cold cloth on face as needed (stimulates trigeminal nerve)
⚬ fan directed at patient's face may provide relief
● medications for treatment of dyspnea 1
⚬ opioids, such as morphine or fentanyl, typically used in patients with dyspnea refractory
to disease-modifying or nonpharmacologic treatment
– consider low-dosed and slow IV titration with immediate-release opioid
– repeating treatment may be repeated every 15 minutes until patient shows symptom
relief
– 24-hour treatment suggested if patient has continuous dyspnea or dyspnea at rest
⚬ benzodiazepines
– generally not as effective as opioids
– consider titrating to effective dose
⚬ combination of opioids and benzodiazepines titrated to effective dose may be
considered
● oxygen 1
⚬ use should be aligned with patient's goals of care
⚬ not useful in normoxemia or when patient is near death and in no distress
⚬ dosing variable and guided by goals of therapy and patient characteristics
⚬ improves partial pressure of oxygen and reduces lactic acidemia
⚬ may be used to treat hypoxemia

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● trial of noninvasive ventilation may be considered, but discontinued if no effect 1


● see Dyspnea and Stridor in Palliative Care Patients for additional information

Thirst and Xerostomia


● frequent mouth care suggested 1
● general measures to prevent and alleviate thirst include 1
⚬ frequent use of
– frozen gauze pads with normal saline or ice chips
– water-soaked gauzes
– water spray
⚬ topical products containing olive oil, betaine, and xylitol
⚬ artificial saliva
⚬ salivary flow stimulants
● heated humidifiers suggested for patients being treated with high-flow oxygen therapy 1
● lemon-glycerin swabs and dry oral tissues not recommended 1
● effectiveness of thirst management should be evaluated and documented 1

STUDY
● SUMMARY
thirst intervention bundle including oral swab wipes, sterile ice-cold water sprays, and
menthol lip moisturizer may reduce thirst intensity in adults in intensive care unit
DynaMed Level 2

RANDOMIZED TRIAL: Intensive Care Med 2014 Sep;40(9):1295


Details
⚬ based on randomized trial without blinding of patients
⚬ 252 adults (mean age 55 years) in intensive care unit ≥ 24 hours reporting thirst were
randomized to thirst intervention bundle (oral swab wipes, sterile ice-cold water sprays,
and menthol lip moisturizer) in 3 15-minute sessions for 2 days vs. 15-minute
observation
⚬ inclusion criteria included score ≥ 3 points on numeric rating scale (NRS) for thirst inten‐
sity and/or thirst distress (ranging from 0 to 10 points with higher score indicating more
severe thirst)
⚬ 71% only had treatment for 1 day but were included in analysis
⚬ mean baseline score on NRS 5.6 points for thirst intensity and 4.6 points for thirst
distress
⚬ comparing thirst intervention bundle vs. standard care
– mean decrease in thirst intensity 2.3 points vs. 0.6 points (p < 0.001)
– mean decrease in thirst distress 1.8 points vs. 0.4 points (p < 0.001)

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⚬ Reference - Intensive Care Med 2014 Sep;40(9):1295, commentary can be found in


Intensive Care Med 2014 Sep;40(9):1385

STUDY
● SUMMARY
scheduled application of ice water oral swabs and menthol lip moisturizer every hour
may reduce thirst intensity and dry mouth compared to application upon patient re‐
quest in adults in intensive care unit DynaMed Level 2
RANDOMIZED TRIAL: Am J Crit Care 2019 Jan;28(1):41
Details
⚬ based on nonrandomized trial
⚬ 134 adults (mean age 61 years) in intensive care unit > 12 hours reporting intensive
thirst or thirst distress were provided with fresh ice water oral swabs and menthol lip
moisturizer every hour for 7 hours or at request of patient
⚬ 23% lost to follow-up and excluded from analysis
⚬ thirst intensity and distress, and dry mouth were assessed by numeric rating scale (rang‐
ing from 0 to 10 points with higher score indicating more severe thirst)
⚬ baseline scores
– 6.8 points for thirst intensity
– 5.2 points for thirst distress
– 6.7 points for dry mouth
⚬ comparing treatment every hour vs. at patient request
– mean reduction in thirst intensity 2.84 points vs. 1.68 points (p = 0.02)
– mean difference in dry mouth 3.15 points vs. 1.56 points (p = 0.008)
⚬ no significant difference in thirst distress
⚬ Reference - Am J Crit Care 2019 Jan;28(1):41

Anxiety
● family members and/or nursing staff may provide reassuring presence and help prevent
anxiety 5
⚬ familiarity of nursing staff to patient important
⚬ preprocedural explanation may aid in preventing procedural anxiety
⚬ increased presence is needed if there are signs of increased anxiety when nurse leaves
the room or frequent calls for a nurse
● in patients with mild-to-moderate anxiety, short-acting benzodiazepines (such as lo‐
razepam or midazolam) may be needed 5
● for patients with severe anxiety on mechanical ventilation, continuous sedatives may be
needed 5
⚬ propofol 0.005 mg/kg/minute IV
⚬ dexmedetomidine 0.2-0.7 mg/kg/minute IV

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● see Anxiety in Palliative Care Patients for additional information

STUDY
● SUMMARY
communication boards may decrease anxiety in adults compared to standard communi‐
cation on mechanical ventilation in intensive care unit DynaMed Level 2

RANDOMIZED TRIAL: Iran J Nurs Midwifery Res 2018 Sep;23(5):358


Details
⚬ based on small quasi-randomized trial
⚬ 30 adults (mean age 45 years) on mechanically ventilation in the intensive care unit were
randomized to communication board standard vs. communication methods
⚬ communication board had illustrations of patient needs on front, and picture of a body
and whiteboard on back
⚬ anxiety was assessed by Hospital Anxiety and Depression Scale (HADS) (ranging from 0
to 21 points, with higher score indicating greater anxiety)
⚬ mean HADS score 3 points with communication board vs. 12 points with standard com‐
munication methods (p < 0.003)
⚬ Reference - Iran J Nurs Midwifery Res 2018 Sep;23(5):358

STUDY
● SUMMARY
use of illustrated communication card by chaplain reported to reduce anxiety in adults
on mechanical ventilation in intensive care unit DynaMed Level 3

UNCONTROLLED TRIAL: Ann Am Thorac Soc 2016 Aug;13(8):1333


Details
⚬ based on uncontrolled trial
⚬ 25 adults on mechanical ventilation > 6 hours in intensive care unit had spiritual care by
hospital chaplain using illustrated communication card to assess spiritual affiliations,
emotions, and needs
⚬ anxiety was assessed by visual analog scale (VAS) (ranging from 1 to 100 mm, with high‐
er score indicating worse symptoms)
⚬ mean decrease in VAS score from 64 to 44 mm (p = 0.002)
⚬ Reference - Ann Am Thorac Soc 2016 Aug;13(8):1333, commentary can be found in Ann
Am Thorac Soc 2016 Aug;13(8):1215

Delirium
● prevention of delirium in high-risk patients may include 5
⚬ environmental adjustments, such as opening shades and turning lights on or off
⚬ ensuring patients with sensory disorders have glasses or hearing aid
⚬ minimizing sensory overload
⚬ providing uninterrupted periods of sleep
● in patients with delirium who are calm and not in distress, pharmacological management
not necessary 5

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● pharmacologic management of delirium


⚬ no single effective pharmacologic approach to treatment of delirium exists
⚬ symptoms of delirium should be promptly treated (DGAI/DIVI Grade A, Level 1b)
⚬ dexmedetomidine may reduce time to delirium resolution
⚬ cholinergic agents do not appear to be effective
⚬ antipsychotics
– require electrocardiographic (ECG) monitoring
– may not reduce delirium duration but may be considered for symptomatic treatment
– atypical antipsychotics may reduce duration of delirium in adult intensive care unit
(ICU) patients, but may cause sedation and respiratory depression
⚬ see Delirium in the Intensive Care Unit (ICU) for details
● nonpharmacological treatment recommendations from National Institute for Health and
Care Excellence (NICE) include
⚬ use verbal and nonverbal techniques to de-escalate situation for distressed patients at
risk of harming themselves or others
⚬ provide reassurance for patients diagnosed with delirium; consider involving family,
friends and caretakers to assist
⚬ provide suitable care environment
⚬ if delirium does not resolve, reevaluate for underlying causes and assess for dementia if
possible
⚬ Reference - National Institute for Health and Care Excellence (NICE) NICE 2010 Jul:CG103
, summary can be found in BMJ 2010 Jul 28;341:c3704 or Ann Intern Med 2011 Jun
7;154(11):746
● nonpharmacologic treatment options include
⚬ addressing medical issues
– identify and treat possible causes of delirium
– treat medical problems, including pain, hypoxia, infection, and metabolic disorders
– maintain hydration and nutrition
⚬ drug management
– discontinue or reduce dose of psychoactive drugs, including anticholinergics, seda‐
tives or hypnotics, and opioids
– replace existing medications with less toxic alternatives
– use nonpharmacological alternatives (such as music, massage, and relaxation tech‐
niques) to manage sleep and anxiety problems
⚬ reorienting patient
– establish quiet, warm, soothing environment
– facilitate involvement of family and friends
– address sensory impairment; provide eyeglasses, hearing aid, interpreters
– encourage regular communication and self-care

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– for distressed patients at risk of harming themselves or others use verbal and non‐
verbal techniques to de-escalate situation
⚬ encouraging mobility
– ambulate patient ≥ 3 times/day
– use active range of motion exercises
– avoid physical restraints, tethers, and bed alarms
⚬ normalizing sleep-wake cycle
– discourage daytime napping and encourage bright lights during the day
– optimize nighttime environment for sleeping with nonpharmacological protocol, in‐
cluding quiet room, low lighting, and uninterrupted sleeping period
⚬ Reference - Lancet 2014 Mar 8;383(9920):911, commentary can be found in Lancet 2014
Jun 14;383(9934):2044
● in critically ill adults, bright light therapy not suggested for treatment of delirium (ACCCM
Conditional recommendation, Moderate quality evidence) (Crit Care Med. 2018
Sep;46(9):e825)

Death Rattle
● evaluation for death rattle involves listening to patient 5
⚬ audible without stethoscope
⚬ caused by secretions which produce resonant sounds in pharyngeal space
● death rattle may be distressing to family members and caregivers of dying patients, but
may not distress patient 5
● family and staff should be assured that patient is not in discomfort 5
● antisecretory medications often not justified since patient not distressed 5
● pharmacologic treatments that have been used to reduce death rattle include 5
⚬ hyoscine (also known as scopolamine) transdermal or subcutaneous
⚬ atropine drops orally
⚬ glycopyrrolate parenterally
● nonpharmacologic treatments may include 5
⚬ positioning patient on side to aid in draining secretion and minimizing upper airway
sounds
⚬ oral suctioning and gentle pharyngeal suctioning to reduce noise
● aggressive pharyngeal suctioning should only be considered when secretions are
voluminous 5

STUDY
● SUMMARY
scopolamine butylbromide at recognition of dying phase reduces death rattle in adults
in hospice DynaMed Level 1

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RANDOMIZED TRIAL: JAMA 2021 Oct 5;326(13):1268


Details
⚬ based on randomized trial
⚬ 162 adults in hospice with life expectancy of ≥ 3 days were randomized at recognition of
dying phase to scopolamine butylbromide 20 mg subcutaneously 4 times daily vs. place‐
bo until death or occurrence of primary outcome
– in case of primary outcome, study medication was stopped and patients received
care as usual, which could include anticholinergics
– patients who received study medication for 8 days were considered as not having
reached dying phase and were withdrawn from study
⚬ exclusion criteria included tracheostomy or tracheal cannula, use of systemic anticholin‐
ergic drug or octreotide, and active respiratory infection
⚬ primary outcome was death rattle grade 2-3 on Back scale (score range 0-3, with 0 for
no rattle and 3 for rattle audible standing in door opening) measured at 2 consecutive
time points at interval of 4 hours apart
⚬ 157 patients (median age 76 years, 56% women) with correct recognition of dying phase
were included in analysis
– 86% had cancer as primary diagnosis
– most common comorbidities were cardiovascular disease (27%), chronic obstructive
pulmonary disease (17%), and diabetes (11%)
⚬ comparing scopolamine butylbromide vs. placebo
– primary outcome in 13% vs. 27% (p = 0.02, NNT 8)
– primary outcome at 48 hours in 8% vs. 17% (no p value reported)
– median time from recognition of dying phase to death 42.8 hours vs. 29.5 hours (p =
0.04)
– restlessness in 28% vs. 23% (not significant)
– dry mouth in 10% vs. 15% (not significant)
– urinary retention in 23% vs. 17% (not significant)
⚬ no significant differences in pain, dyspnea, nausea, and vomiting, or use of opioids,
haloperidol, or sedatives
⚬ Reference - SILENCE trial (JAMA 2021 Oct 5;326(13):1268), editorial can be found in JAMA
2021 Oct 5;326(13):1263

Withdrawal of Life-Sustaining Therapy

Determinants of Withdrawal of Life-Sustaining Therapy


● determinants of withdrawal of life-sustaining therapy may include 2
⚬ very low probability of survival
⚬ very high probability of severely impaired cognitive function

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⚬ recognition that patient would not want to continue life support in such circumstances if
they could speak for themselves
● American Medical Association (AMA) ethical guidance
⚬ a patient deemed to have decision-making capacity for the decision at hand has the
right to decline any medical intervention or ask that an intervention be discontinued
– applies even if decision is expected to lead to the patient's death
– applies regardless of whether the patient is terminally ill
⚬ for a patient who lacks decision-making capacity, designated surrogate has the same
right to decline or request discontinuation of an intervention
⚬ it is ethically acceptable for physicians to withdraw an intervention that no longer sup‐
ports patient's goals for care or provides desired quality of life if the patient (or surro‐
gate) wishes it to be withdrawn
⚬ Reference - AMA code of medical ethics (AMA Delivering Care: Ethics accessed 2019
Jan 18)
● see Ethical and Legal Issues in Palliative Care for details

Preparing for Withdrawal of Life-Sustaining Therapy

● consider implementing protocols to ensure adequate and standardized use of sedation


and analgesia during withdrawal of life support (SCCM Grade 2C) (Crit Care Med 2017
Jan;45(1):103)
● procedures to ensure patient's dignity before withdrawal of life sustaining therapy may
include 2 ,4
⚬ preparation of staff members
– review planned procedures in detail with all relevant staff members
– ensure referring physician is aware of plans
– ensure spiritual care services are offered
– remind staff members that all actions should ensure dignity of the patient
– remind staff members that patient and family are the unit of care
– prepare staffing schedule to maximize continuity of care during dying process, if
possible
– ensure bedside nurse has not been assigned to care for another acutely ill patient, if
possible
– ensure that bedside nurse is experienced in palliative care
– introduce housestaff members to patient and family
– ensure physicians are available and do not abandon patient or family
– ensure physician and nurse communicate about patient's comfort level and that both
participate in palliative care
– introduce respiratory therapist to family, if applicable
⚬ availability of staff members

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– physician, nurse, and/or respiratory specialist should be available during withdrawal


of life-sustaining therapy to quickly address signs of distress during extubation, or
other symptoms that arise (CCCS Recommendation)
– physician attendance or return to bedside at regular intervals suggested (CCCS
Suggestion) to offer emotional support, reevaluate patient's comfort, and speak with
family as needed
⚬ preparation of patient's room
– consider comfort of patient and family, such as lighting, temperature, and personal
items
– liberalize visiting restrictions such as timing, duration, and number of visitors
– remove unnecessary equipment
– bring additional chairs into the room, if necessary
– secure quiet room for family away from the bedside
– use inconspicuous signal to rest of ICU, such as sign on door or curtain, that with‐
drawal of life sustaining measures is in progress
⚬ preparation of patient
– position patient as comfortably as possible
– honor requests for cultural, spiritual, and religious rituals
– dim lighting on screens required for monitoring such as electrocardiography
– discontinue unnecessary monitoring such as oximetry, unnecessary devices, such as
feeding tubes, unnecessary tests, such as blood work, and unnecessary treatments
such as enteral nutrition
– discontinue medications that do not provide comfort and continue those that do
– ensure patient is as calm and distress-free as possible before withdrawing life
support
⚬ preparation of family members
– inform family members of (CCCS Recommendation)
● process of withdrawing life sustaining therapy
● role of each team member
● what to expect during dying process, such as agonal breathing, unusual sounds,
and changes in skin color
● physical signs of distress they may witness and how distress will be treated
● variability and unpredictability of time between withdrawing life sustaining mea‐
sures and death
– invite hospital spiritual care and/or social work to attend discussions of withdrawal of
life-sustaining measures
– give young children of adult patients special attention and support
– include members of interdisciplinary team in discussions with family/patient about
what to expect during withdrawal of life sustaining therapy (CCCS Suggestion)

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– allow family members to participate in patient care as appropriate (CCCS


Recommendation)
– encourage family members to celebrate life of patient through memory books, ex‐
pressions of life, or cultural or religious rituals (CCCS Recommendation)
● addressing cultural issues
⚬ explore how patient's culture, religion, or spiritual beliefs affect end-of-life decision-mak‐
ing or care preferences (ASCO Strong recommendation, Formal consensus)
– avoid making assumptions about patient's end-of-life preferences based on stereo‐
types related to race, ethnicity, culture, religion, or spirituality
– ask open-ended questions regarding influence of patient's culture and spirituality on
medical decisions
– consider standardized tool such as Faith and Belief, Importance, Community, Address
in Care (FICA) to assess spiritual or religious beliefs (questions of FICA tool can be
found at George Washington Institute for Spirituality and Health )
– in case of spiritual distress, refer to medically trained chaplain for spiritual support
– Reference - J Clin Oncol 2017 Nov 1;35(31):3618
⚬ see Communication Issues in Palliative Care for details

Discontinuation of Treatment and Monitoring


● each intensive care unit (ICU) encouraged to implement protocols for withdrawal of me‐
chanical ventilation and life-sustaining therapy (CCCS Suggestion) 4
● discontinue all noncomfort medications, blood transfusions, hemodialysis, vasopressors,
inotropes, parenteral nutrition, enteral tube feeding, antibiotics, IV fluids, and blood work
(CCCS Recommendation) 4
● not providing supplemental oxygen is suggested, unless needed for comfort (CCCS
Suggestion) 4
● individualize pace of withdrawal for each patient (CCCS Recommendation) 4
● order of discontinuation (CCCS Recommendation) 4
⚬ vasopressors and inotropes usually discontinued first, followed by mechanical ventila‐
tion and artificial airway
⚬ withdraw life-sustaining therapy in a stepwise manner to ensure alleviation of pain res‐
piratory distress, or anxiety at each step
● withdrawal of mechanical ventilation 4
⚬ individualize the sequence and process of withdrawal with goal of comfort (CCCS
Recommendation)
⚬ withdraw mechanical ventilation as quickly as possible, with speed determined by time
needed to achieve comfort at each step (CCCS Recommendation)

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⚬ do not routinely extubate patient to non-mechanical ventilation (CCCS


Recommendation)
⚬ in pharmacologically paralyzed patients, it is typical not to extubate or wean to sponta‐
neous ventilator mode, continuous positive airway pressure, or T-piece (CCCS
Recommendation)
⚬ goal is usually to extubate patient to room air in most cases (CCCS Suggestion)
⚬ extubation is preferable over leaving patient intubated on minimal or no mechanical
ventilatory support (CCCS Suggestion)
⚬ discontinue all monitoring not aimed at achieving comfort (CCCS Recommendation)
⚬ see Withholding and Withdrawing Ventilatory Support in Adults in the Intensive Care
Unit for details on immediate extubation vs. terminal weaning

STUDY
● SUMMARY
resumption of transient cardiac activity after pulselessness reported in up to 14% and
estimated probability of resumption after 5 minutes < 1% in adults who died after with‐
drawal of life-sustaining measures in ICU
COHORT STUDY: N Engl J Med 2021 Jan 28;384(4):345
Details
⚬ based on prospective cohort study
⚬ 631 adults (average age 63 years) who had planned withdrawal of life-sustaining mea‐
sures in ICU were assessed for 30 minutes after determination of death
– blood pressure measured by arterial catheter, heart rhythm assessed by electrocar‐
diography (EKG), and oxygen saturation measured by plethysmography were as‐
sessed continuously ≥ 15 minutes before withdrawal of life-sustaining measures and
up to 30 minutes after determination of death
– clinicians reported activity on bedside EKG and arterial pressure catheter monitors,
palpated arterial pulse, breaths, or physical movements
⚬ resumption of cardiac electrical and pulsatile activity assessed retrospectively using EKG
and arterial pressure catheter waveforms defined as return of arterial pulse pressure ≥
5 mm Hg corresponding to ≥ 1 QRS complex after pulse pressure was < 5 mm Hg for at
least 60 seconds
⚬ median time from withdrawal of life-sustaining measures to determination of death 60
minutes
⚬ in analysis of 631 patients who had clinical observation or waveform recordings, 1% had
resumption of clinically identified cardiac activity
⚬ in retrospective analysis of 480 patients with complete data for both clinical observation
and waveform recordings ≥ 5 minutes after death
– 14% had resumption of cardiac activity
– longest duration of pulselessness before resumption of cardiac activity was 4 minutes
20 seconds
– longest duration of resumed cardiac activity was 13 minutes 14 seconds

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– 2 resumptions occurred in analysis of 32 patients eligible for organ donation


⚬ in analysis of 432 patients with waveform recordings for 30 minutes after determination
of death
– all resumption of cardiac activity occurred within 5 minutes after pulselessness
– estimated probability of resumptions after 5 minutes < 1%
⚬ Reference - DePPaRT trial (N Engl J Med 2021 Jan 28;384(4):345)

Assessment of Distress During Withdrawal of Life-Sustaining Therapy

Pain

● assess pain using a standardized scale, such as Behavioral Pain Scale or Critical Care
Observation Tool (CCCS Recommendation) 4
● involve family members in decisions about whether patient is in pain (CCCS
Recommendation) 4
● objective signs for pain assessments may include 4
⚬ tachypnea
⚬ tachycardia
⚬ diaphoresis
⚬ accessory muscle use
⚬ nasal flaring
⚬ grimacing
⚬ rigidity
⚬ wincing
⚬ eye shutting
⚬ fist clenching
⚬ verbalizing
⚬ moaning

Agitation

● assess agitation using a standardized assessment scale that has been validated in critically
ill patients (CCCS Recommendation) 4
● standardized assessment scales include
⚬ Richmond Agitation-Sedation Scale - 10-point scale ranging from -5 (unarousable) to +4
(combative) (Vanderbilt ICU Delirium and Cognitive Impairment Study Group , AACN
Adv Crit Care 2015 Apr;26(2):110)
⚬ Sedation-Agitation Score (SAS) - ranges from 1 to 7 points, with higher score indicating
worse agitation (Vanderbilt ICU Delirium and Cognitive Impairment Study Group )4
⚬ Ramsay Agitation Sedation Scale (RASS) - ranges from 1 to 6, with lower score indicating
worse agitation (Stanford School of Medicine Palliative Care Training Portal )4

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Respiratory Distress

● use of a standardized assessment tool is suggested for assessment of respiratory distress,


such as Respiratory Distress Observation Scale (RDOS) (CCCS Suggestion) 4
● involving family members in decisions about whether patient is in respiratory distress is
suggested (CCCS Suggestion) 4
● signs indicating respiratory distress may include 4
⚬ tachypnea
⚬ rising respiratory rate (> 50% from baseline)
⚬ tachycardia
⚬ fearful facial expression
⚬ accessory muscle use
⚬ paradoxical breathing
⚬ nasal flaring

Delirium

● when appropriate, assess patients for delirium during withdrawal of life-sustaining mea‐
sures using a standardized tool that has been validated in critically ill patients (CCCS
Recommendation), such as 4
⚬ Confusion Assessment Method for the intensive care unit (CAM-ICU) - 4-item question‐
naire with ≥ 3 features positive indicating high risk of delirium (Vanderbilt ICU Delirium
and Cognitive Impairment Study Group )
⚬ Intensive Care Delirium Screening Checklist (ICDSC) - ranges from 0 to 8 points with sub‐
syndromal delirium defined as score of 1-3 points and delirium if score ≥ 4 points
(Vanderbilt ICU Delirium and Cognitive Impairment Study Group )

Pharmacological Management of Distress


● goal of pharmaceutical management is to treat and prevent symptoms (CCCS
Recommendation) 4
● whenever a patient is given any medication to treat or prevent symptoms during withdraw‐
al of life-sustaining therapy, document the rationale (CCCS Recommendation) 4
● discontinuing paralytic medications and letting their effect wear off is suggested to enable
signs of distress before withdrawing life-sustaining therapy (CCCS Suggestion) 4
● choice of opioid and sedative medications 4
⚬ if patient is already being treated with stable dose of opioid and/or sedative, continue
treatment at same dose(s) during withdrawal of life-sustaining therapy (CCCS
Recommendation)
⚬ in opioid-naive patients with pain and dyspnea, morphine is first-line treatment during
withdrawal of life-sustaining therapy (CCCS Recommendation)

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⚬ sedatives such as barbiturates or propofol suggested as second-line treatment for seda‐


tion when benzodiazepines are ineffective or in exceptional circumstances (CCCS
Suggestion)
● opioid titration 4
⚬ titrate opioids to symptoms with no specified dose limit (CCCS Recommendation)
⚬ treatment with IV bolus dose followed by infusion is suggested (CCCS Suggestion)
⚬ starting bolus dose of morphine 2 mg IV (or equianalgesic dose of other opioid), titrated
to effect (CCCS Recommendation)
⚬ starting dose may be adjusted based on size, age, and organ dysfunction of patient
(CCCS Recommendation)
⚬ if patient develops pain or dyspnea while receiving a morphine or hydromorphone infu‐
sion, reasonable to give bolus dose of 2 times the hourly infusion dose (CCCS
Recommendation)
⚬ order IV morphine/hydromorphone bolus doses every 15 minutes as needed (CCCS
Recommendation)
⚬ order IV fentanyl bolus doses every 5 minutes as needed (CCCS Recommendation)
⚬ if patient has 2 bolus doses in an hour, reasonable to double the infusion rate (CCCS
Recommendation)
⚬ treatment as needed with antinauseant medications with opioids is suggested (CCCS
Suggestion)
● sedative titration (CCCS Recommendation) 4
⚬ only use sedatives after pain and dyspnea have been effectively treated with opioids,
though combinations of opioids and sedatives can be used for symptom management
⚬ titrate sedatives to symptoms with no specified dose limit
⚬ in sedative-naive patients who are symptomatic, treat with an IV bolus dose of sedative,
followed by an infusion
– if benzodiazepine-naive, reasonable to give midazolam 2-mg IV bolus dose, followed
by 1-mg/hour infusion
– doses may be adjusted based on size, age, and organ dysfunction of patient
⚬ if patient is being treated with midazolam and becomes symptomatic, reasonable to
give bolus dose equal to or double the hourly infusion dose
– order IV bolus doses every 5 minutes as needed
– if patient requires 2 bolus doses in an hour, reasonable to double the infusion rate
⚬ propofol is an alternative to midazolam for patients already on stable infusion of propo‐
fol, or physicians who are comfortable using propofol during withdrawal of life-sustain‐
ing therapy
● in conscious patients with post-extubation stridor, inhaled epinephrine is suggested (CCCS
Suggestion) 4

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Bereavement
● provide ongoing assessment of grief and bereavement throughout disease course and in‐
tervene or refer for ongoing bereavement services when warranted; consider offering fam‐
ily members 4
⚬ acute grief support at time of withdrawal of life sustaining therapy
⚬ referral to community bereavement services
⚬ future opportunity to debrief with physician and medical team
⚬ education about grieving process
● additional family support may include 4
⚬ sending condolence letter to family members including bereavement support
information
⚬ educating medical team on acute bereavement support for grieving family members
and friends
⚬ contacting family members weeks or months after patient's death to answer questions
and assess coping
● see Grief and Bereavement in Palliative Care for additional information

STUDY
● SUMMARY
condolence letter may increase depression and posttraumatic stress disorder in relatives
of patients who died in intensive care unit DynaMed Level 2

RANDOMIZED TRIAL: Intensive Care Med 2017 Apr;43(4):473


Details
⚬ based on randomized trial without attention control
⚬ 242 relatives of patients who died in intensive care unit were randomized to receive vs.
not receive a condolence letter 15 days after patient’s death
⚬ condolence letter included recognition of death and name of the deceased, mention of
personal impression of the deceased, recognition of family member, offer to help, and
expression of sympathy
⚬ at 1 month and 6 months, patients were assessed for
– symptoms of depression defined as score ≥ 8 points on Hospital Anxiety and
Depression Scale (HADS, ranging from 0 to 42 points, with higher scores indicating
worse depression)
– posttraumatic stress disorder (PTSD)-related symptoms defined as score ≥ 26 points
on Impact of Event Scale Revised (ranging from 0 to 88 points, with higher score indi‐
cating greater severity of posttraumatic stress symptoms)
⚬ symptoms of depression in 56% with condolence letter vs. 42% without condolence let‐
ter at 1 month (p = 0.05, NNH 7)
⚬ comparing condolence letter vs. no condolence letter at 6 months
– symptoms of depression in 37% vs. 25% (p = 0.05, NNH 8)

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–PTSD-related symptoms in 52% vs. 37% (p = 0.03, NNH 6)


⚬ no significant difference in high risk for complicated grief at 6 months
⚬ Reference - Intensive Care Med 2017 Apr;43(4):473

Guidelines and Resources

Guidelines

International Guidelines

● American Thoracic Society/American Association of Critical Care Nurses/European Society


of Intensive Care Medicine/Society of Critical Care Medicine (ATS/AACN/ACCP/ESICM/SCCM)
policy statement on responding to requests for potentially inappropriate treatments in in‐
tensive care units can be found in Am J Respir Crit Care Med 2015 Jun 1;191(11):1318

United States Guidelines

● American Thoracic Society/American Geriatrics Society (ATS/AGS) policy statement on mak‐


ing medical treatment decisions for unrepresented patients in intensive care unit (ICU) can
be found in Am J Respir Crit Care Med 2020 May 15;201(10):1182
● National Coalition Project (NCP) clinical practice guideline on quality palliative care: 4th
edition can be found at NCP 2018 PDF
● Advisory Board of the Improving Palliative Care in the ICU (IPAL-ICU) reports on
⚬ integration of palliative care in the context of rapid response can be found in Chest 2015
Feb;147(2):560
⚬ integrating palliative care into care of neurocritically ill patients can be found in Crit Care
Med 2015 Sep;43(9):1964
⚬ palliative care in the ICU: relief of pain, dyspnea, and thirst can be found in Intensive
Care Med 2014 Feb;40(2):235
⚬ choosing and using screening criteria for palliative care consultation in the ICU can be
found in Crit Care Med 2013 Oct;41(10):2318, editorial can be found in Crit Care Med
2013 Oct;41(10);2443
⚬ integrating palliative care in the surgical and trauma intensive care unit can be found in
Crit Care Med 2012 Apr;40(4):1199
● American College of Critical Care Medicine (ACCM) consensus statement on recommenda‐
tions for end-of-life care in the intensive care unit can be found in Crit Care Med 2008
Mar;36(3):953, correction can be found in Crit Care Med 2008 May;36(5):1699
● expert consensus guideline on identifying patients who would benefit from palliative care
services in the surgical intensive care unit can be found in Crit Care Med 2009
Mar;37(3):946, editorial can be found in Crit Care Med 2009 Mar;37(3):1147
● Society of Critical Care Medicine (SCCM)

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⚬ SCCM clinical practice guideline on prevention and management of pain, agitation/seda‐


tion, delirium, immobility, and sleep disruption in adult patients in the ICU can be found
in Crit Care Med 2018 Sep;46(9):e825
⚬ SCCM guideline on family-centered care in neonatal, pediatric and adult ICU can be
found in Crit Care Med 2017 Jan;45(1):103
● American College of Critical Care Medicine/American Thoracic Society (ACCM/ATS) policy
statement on shared decision making in ICUs can be found in Crit Care Med 2016
Jan;44(1):188
● American Thoracic Society/American College of Chest Physicians (ATS/ACCP) clinical prac‐
tice guideline on liberation from mechanical ventilation in critically ill adults can be found
in Am J Respir Crit Care Med 2017 Jan 1;195(1):120
● American Society of Clinical Oncology (ASCO) consensus guideline on patient-clinician com‐
munication can be found at J Clin Oncol 2017 Nov 1;35(31):3618
● American Thoracic Society (ATS) clinical policy statement on palliative care for patients with
respiratory diseases and critical illnesses can be found in Am J Respir Crit Care Med 2008
Apr 15;177(8):912, commentary can be found in Am J Respir Crit Care Med 2008 Oct
1;178(7):775
● American Geriatrics Society (AGS) abstracted clinical practice guideline for postoperative
delirium in older adults can be found in J Am Geriatr Soc 2015 Jan;63(1):142
● American Association for the Surgery of Trauma/Eastern Association for the Surgery of
Trauma (AAST/EAST) evidence-based review on trauma center care and palliative care pro‐
cesses in geriatric trauma patients can be found in J Trauma Acute Care Surg 2019
Apr;86(4):737
Canadian Guidelines

● Canadian Critical Care Society/Canadian Association of Critical Care Nurses (CCCS/CACCN)


guideline on withdrawal of life-sustaining measures can be found in Intensive Care Med
2016 Jun;42(6):1003
● Canadian Critical Care Society (CCCS) position paper on withholding and withdrawing life-
sustaining treatment can be found in Can J Anaesth 2018 Jan;65(1):105PDF

European Guidelines

● German Society of Hematology and Medical Oncology/Austrian Society of Hematology and


Oncology/German Society for Medical Intensive Care Medicine and Emergency
Medicine/Austrian Society of Medical and General Intensive Care and Emergency Medicine
(Deutsche Gesellschaft fur Hämatologie und Medizinische Onkologie/Österreichische
Gesellschaft für Hämatologie und Medizinische Onkologie/Deutsche Gesellschaft für
Internistische Intensivmedizin und Notfallmedizin/Österreichische Gesellschaft für
Internistische und Allgemeine Intensivmedizin und Notfallmedizin [DGHO/OeGHO/DGIIN/

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ÖGIAIN]) consensus statement on cancer patients requiring intensive care support can be
found in Ann Hematol 2018 Jul;97(7):1271
● German Society of Anaesthesiology and Intensive Care Medicine and German
Interdisciplinary Association for Intensive Care and Emergency Medicine (DGAI/DIVI) guide‐
line on management of delirium, analgesia, and sedation in intensive care can be found in
Ger Med Sci 2015;13:Doc19
● Spanish Society of Intensive and Critical Care Medicine and Coronary Units (Sociedad
Española de Medicina Intensiva, Crítica y Unidades Coronarias [SEMICYUC]) recommenda‐
tions on
⚬ management of adult critically ill patients can be found in Med Intensiva 2017 Jun -
Jul;41(5):285 [English, Spanish]
⚬ treatment at the end of life of the critical patient can be found in Med Intensiva 2008
Apr;32(3):121 [Spanish]
● Belgian Society of Intensive Care Medicine statement on end of life in the intensive care
unit can be found in J Crit Care 2014 Feb;29(1):174PDF , commentary can be found in J
Crit Care 2014 Jun;29(3):455

Asian Guidelines

● Indian Society of Critical Care Medicine (ISCCM) consensus ethical position statement on
end-of-life and palliative care in Indian intensive care units can be found in Indian J Crit
Care Med 2012 Jul;16(3):166

Australian and New Zealand Guidelines

● ​New South Wales Health (NSWH) guideline on clinical principles for end of life and palliative
care can be found at NSWH 2021 Sep PDF
● ​New South Wales Health (NSWH) guideline on end of life care and decision making can be
found at NSWH 2021 Apr PDF
● Australian expert multidisciplinary clinical practice guideline on family meetings in pallia‐
tive care can be found in BMC Palliat Care 2008 Aug 19;7:12

Review Articles

● review can be found in BMC Anesthesiol 2018 Aug 16;18(1):106


● review can be found in Med Klin Intensivmed Notfmed 2018 May;113(4):249 [German]
● review can be found in Rev Bras Ter Intensiva 2017 Apr;29(2):222 [English, Portuguese]
● review can be found in Crit Care Med 2014 Nov;42(11):2418
● review can be found in Crit Care Nurs Clin North Am 2014 Dec;26(4):551
● review of integrating palliative care in the intensive care unit can be found in Curr Opin Crit
Care 2014 Dec;20(6):673

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● review of dying with dignity in the intensive care unit can be found in N Engl J Med 2014 Jun
26;370(26):2506
● review of psychiatric and palliative care in the intensive care unit can be found in Crit Care
Clin 2017 Jul;33(3):735
● review of palliative care, ethics, and the law in the intensive care unit can be found in Crit
Care Nurs Clin North Am 2015 Sep;27(3):383
● review of palliative care in the trauma intensive care unit can be found in Curr Opin Crit
Care 2016 Dec;22(6):584
● review of palliative care in the surgical intensive care unit can be found in Semin
Cardiothorac Vasc Anesth 2013 Dec;17(4):240
● review of symptom assessment and management review of pain, dyspnea, anxiety, deliri‐
um, and death rattle in dying patients in the intensive care unit can be found in AACN Adv
Crit Care 2015 Apr;26(2):110
● review of resolving disagreement during end of life care in the intensive care unit can be
found in Clin Invest Med 2010 Aug 1;33(4):E240, editorial can be found in Clin Invest Med
2010 Aug 1;33(4);E219
● review of withdrawing life support in intensive care units can be found in J Crit Care 2016
Oct;35:12
● review of triggers for referral to neurology palliative care service can be found in Ann
Palliat Med 2018 Jul;7(3):289
● review of patient preferences and surrogate decision-making in neuroscience intensive
care units can be found in Neurocrit Care 2015 Aug;23(1):131
● review of substituted relational autonomy for shared decision-making in critical care can
be found in Crit Care 2018 Oct 11;22(1):260
● review of involving intensive care unit families in decisions can be found in Ann Intensive
Care 2014;4:37
● review of effective and efficient communication with families in the adult intensive care
unit can be found in Ann Am Thorac Soc 2017 Jun;14(6):1015
● review of assessment of healthcare decision-making capacity can be found in Arch Clin
Neuropsychol 2016 Sep;31(6):530

MEDLINE Search
● to search MEDLINE for (Palliative care in the intensive care unit in adults) with targeted
search (Clinical Queries), click therapy , diagnosis , or prognosis

Patient Decision Aids

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● patient decision aids from Ottawa Hospital Research Institute on planning care for critically
ill patients in the intensive care unit PDF

Patient Information
● handouts on palliative care from
⚬ American Academy of Family Physicians or in Spanish
⚬ Patient UK
● handout on end of life planning from EBSCO Health or in Spanish
● handout on advanced care planning from National Institute on Aging
● handouts from The Conversation Project on
⚬ end-of-life conversation starter kit PDF or in Spanish PDF , Portuguese PDF ,
French PDF , Chinese PDF , Hebrew PDF , Korean PDF , Russian PDF ,
Vietnamese PDF , Hindu PDF , Japanese PDF
⚬ how to choose a health care proxy and how to be a health care proxy PDF

References

General References Used

The references listed below are used in this DynaMed topic primarily to support background infor‐
mation and for guidance where evidence summaries are not felt to be necessary. Most references
are incorporated within the text along with the evidence summaries.

1. Puntillo K, Nelson JE, Weissman D, et al; Advisory Board of the Improving Palliative Care in
the ICU (IPAL-ICU) Project. Palliative care in the ICU: relief of pain, dyspnea, and thirst--a re‐
port from the IPAL-ICU Advisory Board. Intensive Care Med. 2014 Feb;40(2):235-48.
2. Cook D, Rocker G. Dying with dignity in the intensive care unit. N Engl J Med. 2014 Jun
26;370(26):2506-14.
3. Aslakson RA, Curtis JR, Nelson JE. The changing role of palliative care in the ICU. Crit Care
Med. 2014 Nov;42(11):2418-28.
4. Downar J, Delaney JW, Hawryluck L, Kenny L. Guidelines for the withdrawal of life-sustain‐
ing measures. Intensive Care Med. 2016 Jun;42(6):1003-17.
5. Campbell ML. Caring for dying patients in the intensive care unit: managing pain, dyspnea,
anxiety, delirium, and death rattle. AACN Adv Crit Care. 2015 Apr-Jun;26(2):110-20.

Recommendation Grading Systems Used


● Scottish Intercollegiate Guidelines Network (SIGN) grading of recommendations
⚬ strengths of recommendation

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– Strong - guideline development group confident that for vast majority of people, in‐
tervention will do more good than harm (or vice versa)
– Conditional - guideline development group confident that intervention will do more
good than harm for most patients; choice of intervention therefore more likely to
vary depending on person's values and preferences, and so healthcare professional
should spend more time discussing options with patient
– Good practice point - recommended best practice based on clinical experience of
guideline development group
⚬ levels of evidence
– Level 1++ - high-quality meta-analyses, systematic reviews of randomized controlled
trials (RCTs), or RCTs with very low risk of bias
– Level 1+ - well-conducted meta-analyses, systematic reviews, or RCTs with low risk of
bias
– Level 1- - meta-analyses, systematic reviews, or RCTs with high risk of bias
– Level 2++
● high-quality systematic reviews of case-control or cohort studies
● high-quality case-control or cohort studies with very low risk of confounding or
bias and high probability that relationship is causal
– Level 2+ - well-conducted case-control or cohort studies with low risk of confounding
or bias and moderate probability that relationship is causal
– Level 2- - case-control or cohort studies with high risk of confounding or bias and sig‐
nificant risk that relationship is not causal
– Level 3 - non-analytic studies, such as case reports or case series
– Level 4 - expert opinion
⚬ Reference - SIGN national clinical guideline on care of deteriorating patients (SIGN 167
2023 Jun PDF )
● Society of Critical Care Medicine (SCCM) grading of recommendations
⚬ strength of recommendations
– 1 (Strong recommendation)
● benefits clearly outweigh harms and burdens or vice versa
● most individuals should receive intervention
● adherence to recommendation could be used as quality criterion or performance
indicator
– 2 (Weak recommendation)
● benefits closely balanced with harms and burdens or uncertainty in estimates of
benefits, harms, and burdens
● decision aids may be useful in helping individuals make decisions consistent with
their values and preferences
● clinicians should examine evidence or summary of evidence themselves

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⚬ quality of evidence
– A (High) - randomized controlled trials (RCTs)
– B (Moderate) - downgraded RCTs or upgraded observational studies
– C (Low) - well-done observational studies with control groups
– D (Very low) - others (such as case reports or case series)
⚬ Reference - SCCM guideline on family-centered care in the neonatal, pediatric, and adult
ICU (Crit Care Med 2017 Jan;45(1):103)
● American Society of Clinical Oncology (ASCO) grading of recommendations
⚬ strength of recommendations
– Strong - high confidence that recommendation reflects best practice based on strong
evidence for true net effect, consistent results with no or minor exceptions, minor or
no concerns about study quality, and/or extent of panelists' agreement
– Moderate - moderate confidence that recommendation reflects best practice based
on good evidence for true net effect, consistent results with minor and/or few excep‐
tions, minor and/or few concerns about study quality, and/or extent of panelists'
agreement
– Weak - some confidence that recommendation offers best current guidance for prac‐
tice based on limited evidence for true net effect, consistent results but with impor‐
tant exceptions, concerns about study quality, and/or extent of panelists' agreement
⚬ types of recommendation
– Evidence-based - sufficient evidence from published studies to inform recommenda‐
tion to guide clinical practice
– Formal consensus - available evidence deemed insufficient to inform recommenda‐
tion to guide clinical practice; expert panel used formal consensus process to reach
recommendation
– Informal consensus
● available evidence deemed insufficient to inform recommendation to guide clinical
practice
● recommendation is considered best current guidance for practice based on infor‐
mal consensus of expert panel
● expert panel agreed formal consensus process not necessary
– No recommendation - insufficient evidence, confidence, or agreement to provide rec‐
ommendation to guide clinical practice at this time; expert panel deemed available
evidence insufficient and concluded it unlikely formal consensus process would
achieve level of agreement needed for recommendation
⚬ Reference - ASCO consensus guideline on patient-clinician communication (J Clin Oncol
2017 Nov 1;35(31):3618)
● Canadian Critical Care Society (CCCS) levels of recommendation

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⚬ Recommendation - multiple studies indicate need for this action, and it is acceptable
within current legal and ethical frameworks
⚬ Suggestion - need for this action supported by single study or multiple expert opinions,
and it is acceptable within current legal and ethical frameworks
⚬ No recommendation - need for this action not supported by studies or multiple expert
opinions and/or it is legally or ethically questionable
⚬ Reference - CCCS interdisciplinary consensus guideline on withdrawal of life-sustaining
measures (Intensive Care Med 2016 Jun;42(6):1003)
● German Society of Anaesthesiology and Intensive Care Medicine/German Interdisciplinary
Association for Intensive Care and Emergency Medicine (DGAI/DIVI) expert grading system
⚬ grades of recommendation
– Grade A - strong recommendation (we recommend/one shall)
– Grade B - recommendation (we suggest/one should)
– Grade O - open (one might consider)
⚬ levels of evidence
– Level 1a - systematic review with homogeneity of randomized controlled trials (RCTs)
– Level 1b - individual RCT with narrow confidence interval
– Level 2a - systematic review with homogeneity of cohort studies
– Level 2b - individual cohort study or low-quality RCT
– Level 3a - systematic review with homogeneity of case-control studies
– Level 3b - individual case-control study
– Level 4 - case series, poor quality cohort and case-control studies
– Level 5 - expert opinion without explicit critical appraisal, or based on physiology,
bench research or "first principles"
⚬ Reference - DGAI/DIVI evidence and consensus based guideline for the management of
delirium, analgesia, and sedation in intensive care medicine (Ger Med Sci 2015 Nov
12;13:Doc19 [English, German])
● American College of Critical Care Medicine (ACCCM) 2018 grading of recommendations
⚬ strengths of recommendation
– Strong - majority of panel members (with input from critical illness survivors) believe
benefits of intervention significantly outweigh risks (or vice versa) and majority of pa‐
tients and clinicians would and should pursue this course of action (or not)
– Conditional - benefits of intervention likely outweigh risks (or vice versa), but panel
(and critical illness survivors) not confident in quality of evidence or trade-offs be‐
tween risks and benefits closely balanced
– Good practice statement - strong but ungraded recommendation in which there is
unequivocal belief that benefit of intervention outweighs risk but no available direct
evidence could be summarized or evaluated
⚬ certainty of evidence

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– High - randomized controlled trials (RCTs) or observational studies twice upgraded for
large effect, dose-response, and/or antagonistic bias
– Moderate
● RCTs downgraded for risk of bias, inconsistency, indirectness, imprecision, or publi‐
cation bias
● observational studies upgraded for large effect, dose-response, or antagonistic
bias
– Low - observational studies or RCTs downgraded twice for risk of bias, inconsistency,
indirectness, imprecision, and/or publication bias
– Very low - RCTs downgraded 3 times or observational studies downgraded for risk of
bias, inconsistency, indirectness, imprecision, and/or publication bias
⚬ Reference - ACCCM clinical practice guideline on prevention and management of pain,
agitation/sedation, delirium, immobility, and sleep disruption in adult patients in the ICU
(Crit Care Med 2018 Sep;46(9):e825)

Synthesized Recommendation Grading System for DynaMed Content


● The DynaMed Team systematically monitors clinical evidence to continuously provide a
synthesis of the most valid relevant evidence to support clinical decision-making (see 7-
Step Evidence-Based Methodology ).
● Guideline recommendations summarized in the body of a DynaMed topic are provided
with the recommendation grading system used in the original guideline(s) and allow users
to quickly see where guidelines agree and where guidelines differ from each other and
from the current evidence.
● In DynaMed content, we synthesize the current evidence, current guidelines from leading
authorities, and clinical expertise to provide recommendations to support clinical decision-
making in the Overview & Recommendations section.
● We use the Grading of Recommendations Assessment, Development and Evaluation
(GRADE) approach to classify synthesized recommendations as Strong or Conditional.
⚬ Strong recommendations may be used when, based on the available evidence, clini‐
cians (without conflicts of interest) consistently have a high degree of confidence that
the desirable consequences (health benefits, decreased costs and burdens) outweigh
the undesirable consequences (harms, costs, burdens).
⚬ Conditional recommendations may be used when, based on the available evidence,
clinicians believe that desirable and undesirable consequences are finely balanced, or
appreciable uncertainty exists about the magnitude of expected consequences (benefits
and harms).
⚬ Conditional recommendations may be used when clinicians disagree in judgments of
the relative benefit and harm or have limited confidence in their judgments.
⚬ Conditional recommendations may also be used when the range of patient values and
preferences suggests that informed patients are likely to make different choices.

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● DynaMed synthesized recommendations (in the Overview & Recommendations section)


are determined with a systematic methodology.
⚬ Recommendations are explicitly labeled as Strong recommendations or Conditional
recommendations when a qualified organization has explicitly deliberated on making
such a recommendation.
⚬ Recommendations are phrased to match the strength of recommendation.
– Strong recommendations use "should do" phrasing, or phrasing implying an expec‐
tation to perform the recommended action for most patients.
– Conditional recommendations use "consider" or "suggested" phrasing.
⚬ Recommendations are verified by ≥ 1 editor with methodological expertise, not involved
in recommendation drafting or development, with explicit confirmation that Strong rec‐
ommendations are adequately supported.
⚬ Recommendations are published only after consensus is established with agreement in
phrasing and strength of recommendation by all editors.
⚬ If recommendations are questioned during peer review or post publication by a quali‐
fied individual, or reevaluation is warranted based on new information detected through
systematic literature surveillance, the recommendation is subject to additional internal
review.

DynaMed Editorial Process


● DynaMed topics are created and maintained by the DynaMed Editorial Team and ad‐
here to evidence-based methodology and inclusive language standards .
● All editorial team members and reviewers have declared that they have no financial or oth‐
er competing interests related to this topic, unless otherwise indicated.
● DynaMed content includes Practice-Changing Updates, with support from our partner,
McMaster University.

Special Acknowledgements

● DynaMed topics are written and edited through the collaborative efforts of the above indi‐
viduals. Deputy Editors, Section Editors, and Topic Editors are active in clinical or academic
medical practice. Recommendations Editors are actively involved in development and/or
evaluation of guidelines.

● Editorial Team role definitions

Topic Editors define the scope and focus of each topic by formulating a set of clinical
questions and suggesting important guidelines, clinical trials, and other data to be
addressed within each topic. Topic Editors also serve as consultants for the internal
DynaMed Editorial Team during the writing and editing process, and review the final
topic drafts prior to publication.

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Section Editors have similar responsibilities to Topic Editors but have a broader role
that includes the review of multiple topics, oversight of Topic Editors, and systematic
surveillance of the medical literature.

Recommendations Editors provide explicit review of Overview and Recommendations


sections to ensure that all recommendations are sound, supported, and evidence-
based. This process is described in "Synthesized Recommendation Grading."

Deputy Editors oversee DynaMed internal publishing groups. Each is responsible for
all content published within that group, including supervising topic development at all
stages of the writing and editing process, final review of all topics prior to publication,
and direction of an internal team.

Published by EBSCO Information Services. Copyright © 2025, EBSCO Information Services. All rights reserved. No part of this
may be reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, or
by any information storage and retrieval system, without permission.
EBSCO Information Services accepts no liability for advice or information given herein or errors/omissions in the text. It is
merely intended as a general informational overview of the subject for the healthcare professional.

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