Stroke

AHA SCIENTIFIC STATEMENT

Palliative and End-of-Life Care in Stroke:

A Scientific Statement From the American
Heart Association
The American Academy of Neurology affirms the value of this statement as an educational tool for neurologists.

Claire J. Creutzfeldt, MD, Chair; Julia Bu, MD; Amber Comer, PhD; Susan Enguidanos, PhD; Barbara Lutz, PhD, RN, FAHA;
Maisha T. Robinson, MS, MD; Darin B. Zahuranec, MD, FAHA; Robert G. Holloway, MD, MPH, Vice Chair; on behalf of the
American Heart Association Stroke Council; Council on Cardiovascular and Stroke Nursing; and Council on Clinical Cardiology

OBJECTIVE: To provide an update on palliative care needs specific to stroke and provide key points for clinicians and health
care systems caring for patients with stroke and their families.

METHODS: Members of the writing group were chosen to represent the multidisciplinary team of professionals who care for
people who have had a stroke. Each member was assigned a topic within their area of expertise, reviewed the literature, and
drafted content with a focus on the past decade to complement the 2014 American Heart Association scientific statement
on palliative and end-of-life care in stroke.

RESULTS: Stroke has multidimensional effects on patients and their families because of threats to personhood, prognostic
uncertainty, and the need to adapt to functional changes after stroke. Palliative care has evolved as both a specialty and
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a skillset with a goal to improve communication about goals of care and quality of life for patients and their families that
emphasizes a holistic, all-person approach. After stroke, palliative care needs (eg, to address pain and physical, emotional,
psychosocial, and spiritual distress) are insufficiently addressed by current models of care. Integrating palliative care principles
is fundamental in all stages of stroke and should include strategies to improve communication about prognosis and goals of
care, address psychosocial needs such as coping with loss, navigating complex health care systems, and preparing for death
when necessary. We also review strategies to address the substantial inequities that exist across sociodemographic and
regional strata in the use of life-sustaining treatment and access to specialists in stroke or palliative care.

CONCLUSIONS: Palliative care needs are common after stroke and should be addressed throughout the illness continuum.
Research is urgently needed.

Key Words: AHA Scientific Statements ◼ palliative care ◼ stroke ◼ terminal care

S
troke is common, disabling, and often deadly. Every all-person approach. Palliative care also encompasses
year, 800 000 people experience a stroke in the hospice and end-of-life care, with aims to improve the
United States, and 140 000 people die as a result. quality of care for people who are dying and their families.
Recent advances in acute stroke treatment have led Neuropalliative care has emerged from an under-
to reduced morbidity and mortality rates, but also to an standing that the palliative care needs of patients with
increased number of survivors, who, along with their fam- neurologic diseases are unique.1,2 Whereas the major-
ily members, are faced with long-term challenges, ranging ity of strokes are not immediately life-threatening, they
from cognitive and physical disabilities to psychosocial are always life-altering, and always require high-quality,
and existential distress. Palliative care focuses on improv- person-centered care.
ing communication about goals of care and quality of life Integrating palliative care principles into stroke care
for both patients and their families, emphasizing a holistic, is fundamental in all stages of stroke. High-quality

© 2024 American Heart Association, Inc.

Stroke is available at www.ahajournals.org/journal/str

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 Creutzfeldt et al Palliative and End-of-Life Care in Stroke

stroke care should always include primary palliative issues related to treatment inequalities also must be
care, which is palliative care provided by the primary addressed. A recent AHA scientific statement13 outlines
CLINICAL STATEMENTS
AND GUIDELINES

medical team who is trained in communication skills the underlying context for longstanding racial and ethnic
and are able to assess and manage patient and family inequities in stroke, and points out that social determi-
needs effectively, either themselves or through refer- nants of health are largely responsible for these histori-
ral to other specialists. Given that a holistic approach cal differences, including systemic and structural racism,
to stroke care is required at varying time points from as well as unequal distribution of wealth. Disparities in
the initial hospitalization through months and years of stroke incidence, outcomes, and acute stroke treatment
recovery for some patients, stroke health care profes- have been demonstrated repeatedly, with Black and
sionals and primary care physicians should be trained Hispanic populations generally shown to have a higher
in primary palliative care and skilled in the early assess- stroke incidence, worse functional outcomes, and less
ment and management of palliative care needs. A pal- frequent receipt of acute stroke treatments such as
liative care specialist team, if available, may be needed intravenous thrombolytic or mechanical thrombectomy.14
in cases with more complex symptoms, situations, or Inequities by race or ethnicity also have been found
communication needs.3 in advance care planning and patterns of serious illness
The first American Heart Association (AHA) scientific treatment after stroke. In general populations, Black or
statement on palliative and end-of-life care in stroke4 Hispanic individuals are consistently less likely to have
covered core palliative care competencies and skills for advance directives compared with White individuals; for
the stroke health care professionals and emphasized the example, 1 nationally representative study demonstrated
need for further research in this area. Since then, sub- that Black individuals had 77% and Hispanic individuals
stantial growth has occurred in various areas related to had 70% lower odds of completing an advance directive
stroke and palliative care, including neuropalliative care,5,6 compared with White individuals.15 People from historically
neurorehabilitation,7 understanding of covert conscious- underrepresented racial or ethnic groups are also less
ness,8 and an increasing recognition of the importance likely than White individuals to have do-not-resuscitate
of care partner support9,10 and postacute stroke care.11 orders or transition to comfort measures only,16,17 and are
Our goal for this 2024 scientific statement is to pro- more likely to use long-term life-sustaining treatments,
vide an updated summary with an emphasis on devel- such as tracheostomy or percutaneous gastrostomy
opments over the past decade, focusing on the adult tube.18 A study of severe acute brain injury that included
patient with stroke. We discuss health care disparities stroke also demonstrated less frequent discharges to
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specific to stroke and palliative care, how to assess for hospice of Black, Hispanic, or Asian individuals when
and manage distressing symptoms and other palliative compared with White individuals.19
care needs among patients and their family care part- Whereas these treatment patterns may partially reflect
ners, challenges of postacute care after stroke survival, underlying individual or cultural differences in prefer-
and end-of-life care. The term “family” in this article is not ences for treatment, assuming that these observed care
limited to those who are related to the patient by blood patterns are solely attributable to patient factors ignores
or marriage, but includes people who are closely involved the long history of inequities in care resulting from
with the patient. upstream factors, such as structural racism and implicit
Wide variability in prognostication, communication, bias, and does not account for the role of clinicians and
assessment, and management of complex needs among the health care system.20 For example, a major driver of
both patients and families exists. This scientific state- “palliative care use” (in this case, use of a comfort care
ment emphasizes the palliative care approach to stroke pathway) is the hospital at which the patient received
care, which is a holistic approach to address the multidi- treatment, independent of race or ethnicity, suggesting
mensional needs of patients facing stroke (in particular, that systems-level factors contribute to these inequi-
severe stroke) and their family members that embraces ties.21 Hospital-level do-not-resuscitate orders have also
a biopsychosocial model of care.12 been shown to affect inpatient mortality rates.22 More
work is needed to better understand the role of clinicians,
hospitals, systems, and upstream factors in these long-
observed differences in serious illness care patterns to
RACIAL OR ETHNIC HEALTH CARE
ensure that treatments appropriately support patient and
INEQUITIES family needs while striving to eliminate effects of bias
Inequities in health care treatment and outcomes across and racism.13
race and ethnicity are pervasive throughout medicine. Systematic tailored interventions may help mitigate
Whereas health care disparities exist across many these historical inequities. For example, a recent imple-
domains (eg, sex, gender, geographic region), this section mentation trial of a goals-of-care conversation priming
focuses on disparities related to race or ethnicity, pre- guide in older hospitalized patients with chronic illnesses
dominantly in the US context, acknowledging that other showed that use of this guide improved documentation

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 Creutzfeldt et al Palliative and End-of-Life Care in Stroke

of goals-of-care conversations, with a greater effect individuals with the same diagnosis, and clinicians need
size in patients from historically underrepresented racial to assess multidimensional needs carefully and proac-

CLINICAL STATEMENTS
or ethnic groups.23 In a randomized trial of Hispanic tively.31 Certain events that occur during the course of an

AND GUIDELINES
patients with noncancer serious illness, a bilingual, bicul- illness can also serve as signposts indicating a change in
tural lay patient navigator did not improve quality of life, health status or signaling prognostic implications. Exam-
but substantially increased engagement in advance care ples of such events include a change in neurologic exam-
planning and hospice use.24 Ongoing work studying the ination results or medical condition, rehospitalization, or
effects of a community-developed culturally based pal- the end of a time-limited trial. If anticipated, such events
liative care teleconsultation program designed for rural can prompt clinicians and patients to discuss changes
southern Black and White populations could be adapted in management, treatment, the status quo, goals of care,
for stroke care.25 The recent scientific statement from and the patient’s and family’s needs, hopes, and fears
the AHA, titled “Strategies to Reduce Racial and Ethnic for the future. Such events may also trigger a referral
Inequities in Stroke Preparedness, Care, Recovery, and to a specialty palliative care or hospice team. There is
Risk Factor Control,”13 outlines strategies that may be tremendous interest in defining appropriate screening
undertaken to help mitigate these inequities at various tools or triggers to identify patients who may warrant
stages of disease, notably the need to address upstream reassessment of goals of care, referral to specialty pallia-
factors, such as structural racism and interventions that tive care, or referral to other services (eg, spiritual care).
consider social determinants of health (eg, housing Table 1 lists examples of palliative care needs checklists
and food security, economic security), and to undertake or screening tools that may assist health care profes-
approaches that are multifaceted and comprehensive. sionals in the timely recognition and management of
These efforts to reduce historical inequities should con- needs. Research in this area is ongoing and more work is
tinue, including culturally tailored interventions focused required to understand the optimal criteria and appropri-
on the needs of diverse communities of patients with ate action when a trigger is met.
severe stroke and their families.
Pain and Other Physical Symptoms
PALLIATIVE CARE NEEDS AND HOLISTIC Common physical symptoms are outlined in Table 2.
Poststroke pain exhibits a trajectory, with highest severity
ASSESSMENT of pain at 4 to 6 months and >2 years after stroke,37 and
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Patient- and family-centered palliative care requires a continues to be underdiagnosed and poorly controlled,
comprehensive assessment of multidimensional dis- suggesting that clinicians need to ask about and assess
tress that has been conceptualized as the “total pain for poststroke pain symptoms carefully. In patients who
of illness,”26 and includes symptoms and needs that go are unable to communicate, nonverbal indicators of dis-
beyond physical pain, including emotional, psychoso- comfort, such as the Critical Care Pain Observation Tool,
cial, spiritual, and existential distress. At the center of which has been used in adults with brain injury, may be
this multidimensional assessment is a proactive and valuable.38,39
holistic exploration of the effects of the stroke on the
patient and their family, their expectations after the
stroke, their values, and their goals of care (Figure 1). Emotional Support
The “total pain” concept illustrates the need for health After a stroke, both patients and care partners experi-
care professionals to focus on sources of distress beyond ence various changes to their prestroke life, identity, and
the physical recovery of stroke, and to acknowledge roles41,42; they often struggle to cope with this sudden
the effects on patients and their family care partners. major illness, and have reported feeling insufficiently pre-
Sources of anxiety and the effects of illness and dis- pared for the future.41 High levels of anxiety and depres-
ability on quality of life and treatment decisions will vary sion among surrogates of patients with acute severe
across individuals on the basis of their values, beliefs, brain injury, such as stroke, persist through the postacute
and culture, requiring an individualized and culturally period and need to be addressed.43 Skilled communica-
sensitive approach to assessment and management.27,28 tion from their stroke health care professionals needs to
The palliative care needs of patients and their care include a commitment to meaningful engagement and
partners fluctuate over the course of the illness on the nonabandonment throughout the stroke trajectory.44,45
basis of events, symptoms, changes in function, and Prognostic uncertainty can be a considerable source
stage of the illness. The trajectory of stroke is distinct of distress after severe stroke, and families need guid-
from that of other serious illnesses29; the trajectory ance and support. Patients who have experienced stroke
of needs is also distinct. Figure 2 shows 6 proposed and their care partners should be viewed as a “unit of
stages after severe stroke, each of which requires a dif- care.”46,47 Dyadic interventions (ie, those that intervene
ferent focus of support.30 Trajectories may vary among with both the care recipient and their support person

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 Creutzfeldt et al Palliative and End-of-Life Care in Stroke
CLINICAL STATEMENTS
AND GUIDELINES
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Figure 1. Total pain model for stroke.

together) may improve physical functioning, memory, needed unbiased, prognostic information, offer treatment
and quality of life for the stroke survivor and depression options, and provide emotional support.
symptoms for the care partner.47,48
Spiritual Support
Psychosocial Support Serious illness, including stroke, challenges spiritual well-
In the setting of acute severe stroke, family members being, whether people identify as religious or not. Spiri-
must step into the role of surrogate decision-makers, tual distress—a disruption of a person’s value or belief
and need to try to honor patient autonomy through sub- system—can lead to a loss of strength, hope, and sense
stituted judgment as they face highly consequential of meaning.50 In the face of prognostic uncertainty after
treatment decisions while facing the possible loss of the acute severe brain injury, families describe the need to
person they knew.49 Such tasks require multidimensional maintain hope.49 However, health care professionals
support from the clinician team, who should provide rarely address spiritual concerns, even when raised by

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 Creutzfeldt et al Palliative and End-of-Life Care in Stroke

CLINICAL STATEMENTS
AND GUIDELINES
Figure 2. Phases after severe stroke.
Diagnosis is the time of presentation. Clinicians provide informational support to patients and families. Treatment after severe stroke typically
necessitates shared decision-making concerning treatments such as intubation, mechanical ventilation, thrombectomy, brain surgery, artificial
nutrition, and hydration. This is a stressful time, especially for families, and may lead to an early decision to withhold or withdraw life-sustaining
treatment. The phase of medical stabilization is often when decisions for longer-term treatments are made, such as percutaneous endoscopic
gastrostomy tube placement, tracheostomy, or comfort measures, in attempts to provide individual, goal-concordant care. Disposition is
discussed with families. The preparation phase occurs before the patient returns home. After a severe stroke, this typically starts in an inpatient
rehabilitation or nursing home setting. In the adjustment phase, the responsibility for providing care shifts from clinicians to family caregivers.
Patients and families are learning (and need support with) how to navigate life in their home environment. Adjustment is mostly a practical
process and includes care coordination and continuity of care. Outpatient rehabilitation programs may continue. Adaptation is an emotional
process that should be supported early in the illness course but is particularly relevant when further neurologic recovery is limited. Data are
derived from Cameron and Gignac.30

family members.51 A recent observational study in medi- disability.57,58 Skilled communicators acknowledge the
cally hospitalized adults suggested that emotional and difficult emotions associated with not having a clear
spiritual support from clinicians were associated with answer or path ahead and help patients and families
better long-term psychological outcomes for surrogate adapt and cope with new possible futures.59 Even when
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decision-makers, whereas increased provision of infor- the eventual outcome is uncertain, clinicians can pro-
mation was not.52 Randomized controlled trials have vide a road map describing anticipated next steps in
suggested improved outcomes among family members management and in the clinical condition, and allevi-
who received specialized spiritual care support in a gen- ate uncertainty by describing a best-case, worst-case
eral intensive care unit population53 and among patients scenario.60 Prognosis discordance between family
with mild stroke.54 Clinicians should ask their patients care partners and physicians is common in the set-
and families about spiritual or religious beliefs and offer ting of acute severe stroke and is typically caused by
referral to a chaplain or spiritual care.4 a combination of misunderstanding and belief differ-
ences, which in turn may be driven by faith, optimism, or
uncertainty.61 It is important to understand the perspec-
Communication and Goals of Care tive of patients and families to manage the discordance
A primary aim of palliative care is to provide goal- appropriately.
concordant care, which is care that is aligned with the Prognostic uncertainty also affects decision-making,
individual goals of care of the patient.55 This requires cli- as it can be challenging to know whether a proposed
nicians to (1) assess the patient’s and family’s under- treatment course is goal-concordant when outcomes
standing and perception of their current condition, values are unclear. A time-limited trial can provide structure and
and preferences, and hopes and fears for the future, support as families navigate life-or-death decisions. A
including potential trade-offs (ie, “What would you be time-limited trial is a way to provide more intensive care
willing, or unwilling, to endure for a certain outcome?”); temporarily, for an agreed-on time period, to allow all
(2) provide tailored and honest information about the ill- parties to better understand the likely prognosis, patient
ness, prognosis, and treatment options; and (3) consider goals, and associated trade-offs.34,35 Time-limited trials
a treatment recommendation that aligns with these.56 may justify the short-term use of medical care that is
After stroke, prognostic uncertainty can lead to feel- overall considered discordant with a patient’s presumed
ings of anxiety and spiritual distress and hinder early or previously stated goals. Such conversations ideally
goal concordance. This uncertainty includes clinical are initiated at an early stage of illness and revisited
uncertainty regarding the extent of functional and cog- periodically.
nitive recovery and the affective uncertainty of how Advance care planning, typically performed in advance
the patient and family may adapt emotionally to future of a serious illness, allows individuals to consider their

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 Creutzfeldt et al Palliative and End-of-Life Care in Stroke

Table 1. Examples of Palliative Care Needs Checklists, Screening Tools, or Triggers That May Assist Health Care Professionals
in the Timely Recognition and Management of Needs
CLINICAL STATEMENTS
AND GUIDELINES

Tool or trigger Questions Action suggestions

Surprise question 32
Would you be surprised if this patient: If “no,” consider a serious illness conversation (eg, advance care
(adapted for stroke) planning, family meeting, referral to palliative care team).
Dies within the next year?
Dies during this hospitalization?
Does not recover to independence?
SuPPOrTT checklist33 Su: Does the patient or family need psychosocial or spiritual If “yes,” consider a primary palliative care intervention (ie, a
support or help with coping? conversation with the patient and family focused on the identi-
fied needs), change in symptom management, or referral to the
P: Does the patient have pain or other distressing symptoms?
respective expert (eg, pain specialist, psychologist, chaplain,
PO: Does the patient or family have questions about prognosis or palliative care team) for specialist palliative care.
treatment options?
rTT: Do we need to readdress goals of care or target treatment to
patient-centered goals?
End of a time-limited A time-limited trial is a specified time frame in which to continue When this specified period has passed, another family meeting is
trial34,35 life-sustaining treatment to evaluate response and prognosis. key to assess symptoms and recovery, and to revisit goals of care.
Changes in living Changes may include moving from a facility to home, increasing Any change can be stressful; a change in living situation may also
situation need for assistance with activities of daily living (eg, dressing, signal a need for revisiting treatment options and goals of care.
meals, toileting), and loss of ability to work or drive. Referral to social work and support groups may be helpful.
Screening for caregiver Ask care partners specifically about their role as a caregiver, their Acknowledge the care partner’s role and possible strain, normal-
distress or burnout own wellbeing, and their ability to cope. ize feelings of overwhelm, and recognize burnout. Consider
involving social work and peer support groups, and encourage
caregivers to engage with their clinicians to address their own
health care needs.
Screening for spiritual Explore sources of hope and inquire into organized religion, Consider referral to spiritual care or personal or community faith
care needs (HOPE personal spiritual beliefs, and practices or restrictions that may leader.
instrument)36 affect medical care.
These tools are meant to help identify needs in a timely and routine manner and trigger certain actions depending on the respective need. This is not a comprehensive
list; research in this area is ongoing.

values and goals of medical care and to designate a sur- subacute care, such as rehabilitation settings, or in long-
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rogate to make decisions for them should they be unable term care (eg, skilled nursing facilities). In a study from
to do so. After stroke, goals of care conversations should the National Hospital Care Survey of 36 519 patients
be considered alongside conversations about second- hospitalized with stroke (International Classification of
ary stroke prevention62–64; however, although desired Diseases, 9th revision, codes 430–438) in 2014 in 94
and recommended, these conversations are infrequent US hospitals, 22.5% died either in the hospital or by the
among stroke survivors.63,65 end of 2015; ≈6.8% died in the hospital and 15.7% died
after discharge, with about half (8.6%) of deaths occur-
ring >90 days after discharge.67 There is wide variation
POSTACUTE CARE in the categorization of reported discharge services and
location for patients hospitalized with stroke. Two US-
Epidemiology based studies that included patients with ischemic or
Stroke remains a leading cause of major disability and hemorrhagic stroke reported that ≈34% to 45% were
multimorbidity66 requiring postacute care at home, in discharged home without additional services (eg, home

Table 2. Common Symptoms After Stroke

Symptoms Management options Considerations
Central poststroke Antidepressants (tricyclics, selective serotonin reuptake inhibitors, Tricyclic antidepressants may lead to dry mouth or delirium
pain serotonin-norepinephrine reuptake inhibitors)
Antiseizure medications Most commonly lamotrigine, pregabalin, or gabapentin
Depression Antidepressants Agent selected on the basis of comorbidities and expected side
effect profile
Hemiplegic Physical therapy Range of motion exercises
shoulder pain
Nonsteroidal anti-inflammatory agents Can help improve range of motion before exercise
Spasticity Stretching exercises
Muscle relaxants
Botulinum toxin
This list focuses on common poststroke symptoms and is not comprehensive. Data derived from Greenway and Robinson.40

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 Creutzfeldt et al Palliative and End-of-Life Care in Stroke

health care, home hospice services); 10% to 11% were nurses and social workers may be the most effective
discharged home with home care or home health ser- approach, given the multidimensional needs of patients

CLINICAL STATEMENTS
vices; 30% to 42% were discharged to inpatient post- with stroke and their family care partners.

AND GUIDELINES
acute care facilities, including inpatient rehabilitation
facilities or skilled nursing facilities; 6% to 8% died in
the hospital; 2% to 3% were discharged to an inpatient Postacute Care of Family Members
hospice facility; and 1% were discharged with home hos- There are limited randomized controlled trials focused on
pice.21,67 Regardless of discharge destination, referrals to postacute stroke palliative care interventions for family
palliative care are typically low: in a review article of pal- members. A recent randomized pilot trial enrolled patient–
liative care after stroke, it was reported that stroke com- care partner dyads from the neurologic intensive care unit
prises between 0.4% and 8.9% of referrals to specialist (many patients, all of whom were able to communicate
palliative care services, with most referrals being made well, had experienced a stroke) into a 6-session longitu-
near the end of life.68 dinal resiliency intervention designed to reduce long-term
emotional distress in family members and patients. The
pilot study demonstrated improved depression, anxiety,
Palliative Care for Stroke in the Postacute and posttraumatic stress in care partners at 12 weeks,48
Setting and additional studies of this intervention are ongoing.
There is limited published research that focuses on post- In addition, the AHA provides a comprehensive group
acute palliative care interventions after stroke. In a sys- of informational and support resources for patients with
tematic review of quantitative studies from 1990 through stroke and their family care partners to help them navi-
2021 describing poststroke palliative care interventions gate life after stroke. Resources particularly relevant to
or end-of-life care, only 7 studies met review criteria; palliative care77 include information on caregiver support,78
studies in this review reported on symptom burden, sat- financial ramifications of stroke, recipe ideas for individu-
isfaction with care, and needs of patients and families.69 als with dysphagia, and links to local support groups.79
There were no randomized controlled trials evaluating These and other resources are widely available on the
poststroke palliative care interventions, and most studies Internet, but families need to be provided with guidance
focused on the final days of life. The authors concluded about which websites might be most helpful, given their
that there was limited evidence to guide how to integrate individual situations and where they are in the stroke tra-
jectory. They also need different types of resources at dif-
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palliative care into routine stroke care, especially if prog-

nosis was uncertain.69 ferent times along the stroke trajectory,30,80 which could be
Whereas not specific to palliative care, and focused on addressed by an interdisciplinary postacute stroke pallia-
patients with stroke who were discharged from the hospi- tive care model that crosses the continuum of care from
tal directly to home, a meta-analysis of 8 randomized con- inpatient care to home.81 These types of care models have
trolled trials with 1196 stroke survivors from the United been recommended and in some cases implemented for
States (3 trials), Canada (4 trials), and Thailand (1 trial) the stroke population in general,81 but have not included
found that receiving a case management intervention a palliative care focus or a focus on patients and families
improved patients’ mental health and activities of daily liv- faced with severe stroke leaving them with severe disabil-
ing.70 The effects on care partners were not mentioned. ity, disorders of consciousness, inability to participate in
A systematic review of 18 studies of family caregiver treatment decisions, or a combination of these.
support and dyadic interventions after stroke suggests
improved caregiver outcomes, including reduced bur-
den and improved mental health and quality of life.71 The END-OF-LIFE CARE AFTER STROKE
authors highlight the need for more rigorous trials that Most patients who die after stroke do so in the hospi-
focus on psychoeducational and skill-building interven- tal or in nursing facilities82 after a decision to withdraw
tions to improve caregiver outcomes. Several community- or withhold life-sustaining therapy.83,84 The proportion
based palliative care models have been developed for of patients with stroke who die at home is increasing.82
heart failure and other serious noncancer illnesses that Patients and families deserve comprehensive end-of-life
could also be adapted for stroke. Models are nurse-led, symptom control, including intensive comfort measures
are designed to improve quality of life or symptom relief, and emotional support.85 Patients who die of stroke
and range in length from 3 to 12 months.72–76 Adapting often have altered consciousness or awareness, or diffi-
these models to stroke populations by integrating find- culty communicating.86 Health care professionals should
ings from the existing literature on the experiences of perform regular pain assessments using both verbal (eg,
patients with stroke and their family care partners should 0–10 pain intensity scale) and nonverbal (eg, increased
be considered as a next step in addressing the postacute respiratory or heart rate, muscle tension, grimacing) indi-
palliative care needs of patients with stroke. For stroke, cators of discomfort. The most commonly documented
interdisciplinary models that include specially trained symptoms after stroke at the end of life include pain

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 Creutzfeldt et al Palliative and End-of-Life Care in Stroke

(25%–65%) and dyspnea (16%–81%),86 for which high-quality stroke care not limited to patients who are
intermittent use of opioids and benzodiazepines is most dying. With the understanding that patients with stroke
CLINICAL STATEMENTS
AND GUIDELINES

effective, with escalating doses. In addition to managing and their families experience an illness trajectory and
restlessness and discomfort, clinicians also must coun- needs that are distinct from those associated with other
sel families on what to expect (eg, reduced food and serious illnesses, researchers realize an urgent need
fluid intake, decreased ability to cough, breathing noises to adapt existing models or create new ones that take
and changes in breathing, reduced circulatory and renal into account the different challenges individuals face
function, reduced levels of consciousness, agitation). as they transition through the stroke care continuum. A
Respiratory secretions can increase as the ability to clear key focus of research should be how to reliably deliver
them decreases (ie, the death rattle), and is often more high-quality goal-concordant care for culturally diverse
uncomfortable for family members than for the patient. patients with stroke and their families and how to mea-
The initial recommendation is to educate family members sure the success of this delivery. As noted in a recently
and reposition the patient; in addition, oral glycopyrro- published study28 concerning cardiovascular disease in
late/scopolamine patches can reduce secretions.87,88 general, the concept of palliative pharmacotherapy spe-
Hospice care is appropriate when the prognosis is cific to stroke requires further research.
≤6 months and life-prolonging measures are not being Multidimensional needs assessment tools should be
pursued. Confusion and wide variability around hospice integrated into routine practice and education,31 stroke
referrals exist, and there is no clear definition of what specialist training should include goals of care commu-
encompasses end-of-life care after stroke. For stroke, nication training,45 and specialist palliative care teams
guidelines suggest that hospice could be considered should be available for consultation when symptoms
when oral intake is limited and artificial nutrition is not are refractory to first-line treatment, care partners are
pursued; complications of stroke occur, including aspira- experiencing distress or burnout, or a goals-of-care or
tion pneumonia, sepsis, refractory sacral ulcers, or recur- prognosis conversation requires more in-depth clinical
rent fevers; imaging findings indicate a poor prognosis; training.
or coma has persisted for 3 days and is associated with
the absence of a verbal response, brainstem reflexes,
and withdrawal response to pain, along with poor renal ARTICLE INFORMATION
function.89 Guidelines to facilitate earlier consideration of The American Heart Association makes every effort to avoid any actual or poten-
hospice care for patients with known preferences that tial conflicts of interest that may arise as a result of an outside relationship or a
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personal, professional, or business interest of a member of the writing panel. Spe-

align with comfort care are needed. cifically, all members of the writing group are required to complete and submit a
Family members are the primary care partners for their Disclosure Questionnaire showing all such relationships that might be perceived
loved one who is nearing the end of life. The hospice as real or potential conflicts of interest.
This statement was approved by the American Heart Association Sci-
team includes nurses, physicians, social workers, spiritual ence Advisory and Coordinating Committee on September 4, 2024, and the
advisors, aides, and often volunteers to provide support American Heart Association Executive Committee on September 23, 2024.
to patients and their family members. Hospice care can A copy of the document is available at https://professional.heart.org/state-
ments by using either “Search for Guidelines & Statements” or the “Browse
be provided in various locations. Inpatient hospice care by Topic” area. To purchase additional reprints, call 215-356-2721 or email
or hospice at a facility is available when care is unable [email protected]
to be provided at home because of refractory symptoms The American Heart Association requests that this document be cited as
follows: Creutzfeldt CJ, Bu J, Comer A, Enguidanos S, Lutz B, Robinson MT,
or patients choose not to die in their home. In the United Zahuranec DB, Holloway RG; on behalf of the American Heart Association
States, hospice services are covered under the Medicare Stroke Council; Council on Cardiovascular and Stroke Nursing; and Council on
benefit. Medicare does not pay for custodial care (eg, Clinical Cardiology. Palliative and end-of-life care in stroke: a scientific state-
ment from the American Heart Association. Stroke. 2025;56:e75–e86. doi:
bathing, feeding, toileting), rehabilitation therapies, or 10.1161/STR.0000000000000479
room and board if a patient is receiving hospice care in a The expert peer review of AHA-commissioned documents (eg, scientific
nursing home or a hospice inpatient facility. statements, clinical practice guidelines, systematic reviews) is conducted by
the AHA Office of Science Operations. For more on AHA statements and
guidelines development, visit https://professional.heart.org/statements. Se-
lect the “Guidelines & Statements” drop-down menu, then click “Publication
CONCLUSIONS AND FUTURE Development.”
DIRECTIONS Permissions: Multiple copies, modification, alteration, enhancement, and dis-
tribution of this document are not permitted without the express permission of the
Since the previous AHA scientific statement on pallia- American Heart Association. Instructions for obtaining permission are located at
https://www.heart.org/permissions. A link to the “Copyright Permissions Request
tive care and stroke was published,4 the palliative care Form” appears in the second paragraph (https://www.heart.org/en/about-us/
approach has been established as an important part of statements-and-policies/copyright-request-form).

e82   February 2025 Stroke. 2025;56:e75–e86. DOI: 10.1161/STR.0000000000000479

 Creutzfeldt et al Palliative and End-of-Life Care in Stroke

Disclosures

CLINICAL STATEMENTS
Writing Group Disclosures

AND GUIDELINES
Writing Other Speakers’ Consultant/
group research bureau/ Expert Ownership advisory
member Employment Research grant support honoraria witness interest board Other
Claire J. University of NIH (R01 NR019268)* None None None None None None
Creutzfeldt Washington
Harborview Medical
Center
Robert G. University of None None None None None None None
Holloway Rochester School of
Medicine
Julia Bu Stroke Center, None None None None None None None
University of
California San Diego
Amber Indiana University None None None None None None None
Comer
Susan University of South- Administration for Community Living* None None None None None None
Enguidanos ern California Leon-
ard Davis School of
Gerontology
Barbara University of North NIH (serves as a coinvestigator on None MedBridge, None None None UNCW
Lutz Carolina–Wilmington an NIH-funded grant studying the Inc.* (professor)†
School of Nursing needs of patients with severe brain
injury [eg, stroke] and their family
members)†
Maisha T. Mayo Clinic None None None None None None None
Robinson
Darin B. University of NIH (NINDS/NINR/NIA)† None None None None None None
Zahuranec Michigan
This table represents the relationships of writing group members that may be perceived as actual or reasonably perceived conflicts of interest as reported on the
Disclosure Questionnaire, which all members of the writing group are required to complete and submit. A relationship is considered to be “significant” if (a) the person
Downloaded from http://ahajournals.org by on April 4, 2025

receives $5000 or more during any 12-month period, or 5% or more of the person’s gross income; or (b) the person owns 5% or more of the voting stock or share of the
entity, or owns $5000 or more of the fair market value of the entity. A relationship is considered to be “modest” if it is less than “significant” under the preceding definition.
*Modest.
†Significant.

Reviewer Disclosures

Speakers’ Consultant/
bureau/ Expert Ownership advisory
Reviewer Employment Research grant Other research support honoraria witness interest board Other
Tamilyn University of NIH/NINR (NIH funding None None None None None None
Bakas Cincinnati targeting stroke family
caregivers)†
Marco A. University of None None None None None None None
Gonzalez- Nebraska
Castellon
Mathew J. Michigan State None None None None None None None
Reeves University
Ilana Ruff Aurora Advocate None None None None None None None
Health
Alexis N. Cedars-Sinai None None None None None None None
Simpkins Medical Center
Jessica University of None NIH (K award, BIRCWH None None None None None
Harman Kentucky recipient, fellow, University of
Thompson Kentucky)*
This table represents the relationships of reviewers that may be perceived as actual or reasonably perceived conflicts of interest as reported on the Disclosure Ques-
tionnaire, which all reviewers are required to complete and submit. A relationship is considered to be “significant” if (a) the person receives $5000 or more during any
12-month period, or 5% or more of the person’s gross income; or (b) the person owns 5% or more of the voting stock or share of the entity, or owns $5000 or more of
the fair market value of the entity. A relationship is considered to be “modest” if it is less than “significant” under the preceding definition.
*Modest.
†Significant.

Stroke. 2025;56:e75–e86. DOI: 10.1161/STR.0000000000000479 February 2025   e83

 Creutzfeldt et al Palliative and End-of-Life Care in Stroke

REFERENCES 18. Kalasapudi L, Williamson S, Shipper AG, Motta M, Esenwa C, Otite FO,
Chaturvedi S, Morris NA. Scoping review of racial, ethnic, and sex dispar-
CLINICAL STATEMENTS

1. Boersma I, Miyasaki J, Kutner J, Kluger B. Palliative care and neu- ities in the diagnosis and management of hemorrhagic stroke. Neurol-
AND GUIDELINES

rology: time for a paradigm shift. Neurology. 2014;83:561–567. doi: ogy. 2023;101:e267–e276. doi: 10.1212/WNL.0000000000207406
10.1212/WNL.0000000000000674
19. Jones RC, Creutzfeldt CJ, Cox CE, Haines KL, Hough CL, Vavilala MS,
2. Creutzfeldt CJ, Wunsch H, Curtis JR, Hua M. Prevalence and out-
Williamson T, Hernandez A, Raghunathan K, Bartz R, et al. Racial and eth-
comes of patients meeting palliative care consultation triggers in neu-
nic differences in health care utilization following severe acute brain injury
rological intensive care units. Neurocrit Care. 2015;23:14–21. doi:
in the United States. J Intensive Care Med. 2021;36:1258–1263. doi:
10.1007/s12028-015-0143-8
10.1177/0885066620945911
3. Quill TE, Abernethy AP. Generalist plus specialist palliative care: creat-
20. Ahmed N, Krevat SA, Weintraub WS. Reducing racial/ethnic disparities in
ing a more sustainable model. N Engl J Med. 2013;368:1173–1175. doi:
palliative care for stroke patients. Cardiovasc Revasc Med. 2022;35:155–
10.1056/NEJMp1215620
156. doi: 10.1016/j.carrev.2021.11.031
4. Holloway RG, Arnold RM, Creutzfeldt CJ, Lewis EF, Lutz BJ, McCann RM,
21. Faigle R, Ziai WC, Urrutia VC, Cooper LA, Gottesman RF. Racial differences
Rabinstein AA, Saposnik G, Sheth KN, Zahuranec DB, et al; on behalf of the
in palliative care use after stroke in majority-white, minority-serving, and
American Heart Association Stroke Council; Council on Cardiovascular and
racially integrated U.S. hospitals. Crit Care Med. 2017;45:2046–2054. doi:
Stroke Nursing; and Council on Clinical Cardiology. Palliative and end-of-life
10.1097/CCM.0000000000002762
care in stroke: a statement for healthcare professionals from the American
22. Kelly AG, Zahuranec DB, Holloway RG, Morgenstern LB, Burke JF. Varia-
Heart Association/American Stroke Association. Stroke. 2014;45:1887–
tion in do-not-resuscitate orders for patients with ischemic stroke: impli-
1916. doi: 10.1161/STR.0000000000000015
cations for national hospital comparisons. Stroke. 2014;45:822–827. doi:
5. Kluger BM, Hudson P, Hanson LC, Bužgovà R, Creutzfeldt CJ, Gursahani R,
10.1161/STROKEAHA.113.004573
Sumrall M, White C, Oliver DJ, Pantilat SZ, et al. Palliative care to support the
23. Curtis JR, Lee RY, Brumback LC, Kross EK, Downey L, Torrence J,
needs of adults with neurological disease. Lancet Neurol. 2023;22:619–
LeDuc N, Mallon Andrews K, Im J, Heywood J, et al. Intervention to pro-
631. doi: 10.1016/S1474-4422(23)00129-1
mote communication about goals of care for hospitalized patients with seri-
6. Creutzfeldt CJ, Kluger B, Kelly AG, Lemmon M, Hwang DY,
ous illness: a randomized clinical trial. JAMA. 2023;329:2028–2037. doi:
Galifianakis NB, Carver A, Katz M, Curtis JR, Holloway RG. Neuropalliative
10.1001/jama.2023.8812
care: priorities to move the field forward. Neurology. 2018;91:217–226. doi:
24. Fischer SM, Min SJ, Kline DM, Lester K, Gozansky W, Schifeling C,
10.1212/WNL.0000000000005916
Himberger J, Lopez J, Fink RM. Patient navigator intervention to improve
7. Gunduz ME, Bucak B, Keser Z. Advances in stroke neurorehabilitation. J
palliative care outcomes for Hispanic patients with serious noncancer ill-
Clin Med. 2023;12:6734. doi: 10.3390/jcm12216734
ness: a randomized clinical trial. JAMA Intern Med. 2024;184:384. doi:
8. Young MJ, Edlow BL, Bodien YG. Covert consciousness. NeuroRehabilita-
10.1001/jamainternmed.2023.8145
tion. 2024;54:23–42. doi: 10.3233/NRE-230123
9. Morgenstern LB, Becker CJ, Lank R, Ortiz C, Zhang G, 25. Watts KA, Gazaway S, Malone E, Elk R, Tucker R, McCammon S,
He K, Case E, Zahuranec DB. Long-term psychological distress among Goldhagen M, Graham J, Tassin V, Hauser J, et al. Community Tele-
surrogate decision makers for Mexican American and non-Hispanic pal: a community-developed, culturally based palliative care tele-consult
White patients with severe stroke. Neurology. 2024;102:e207960. doi: randomized controlled trial for African American and White rural
10.1212/WNL.0000000000207960 southern elders with a life-limiting illness. Trials. 2020;21:672. doi:
10. Choo PY, Shaik MA, Tan-Ho G, Lee J, Ho AHY. Living losses in stroke 10.1186/s13063-020-04567-w
caregiving: a qualitative systematic review of systematic reviews on 26. Rattner M. ‘Total pain’: reverence and reconsideration. Front Sociol.
2023;8:1286208. doi: 10.3389/fsoc.2023.1286208
Downloaded from http://ahajournals.org by on April 4, 2025

psycho-socio-emotional challenges and coping mechanisms. Int J Stroke.

2023;18:268–277. doi: 10.1177/17474930221104908 27. Givler A, Bhatt H, Maani-Fogelman PA. The importance of cultural compe-
11. Duncan PW, Bushnell C, Sissine M, Coleman S, Lutz BJ, Johnson AM, tence in pain and palliative care. StatPearls; 2023. https://www.ncbi.nlm.nih.
Radman M, Pvru Bettger J, Zorowitz RD, Stein J. Comprehensive stroke gov/books/NBK493154
care and outcomes: time for a paradigm shift. Stroke. 2021;52:385–393. 28. Di Palo KE, Feder S, Baggenstos YT, Cornelio CK, Forman DE, Goyal P,
doi: 10.1161/STROKEAHA.120.029678 Kwak MJ, McIlvennan CK; on behalf of the American Heart Association
12. Borrell-Carrió F, Suchman AL, Epstein RM. The biopsychosocial model Clinical Pharmacology Committee of the Council on Clinical Cardiology
25 years later: principles, practice, and scientific inquiry. Ann Fam Med. and Council on Cardiovascular and Stroke Nursing. Palliative pharmaco-
2004;2:576–582. doi: 10.1370/afm.245 therapy for cardiovascular disease: a scientific statement from the American
13. Towfighi A, Boden-Albala B, Cruz-Flores S, El Husseini N, Odonkor CA, Heart Association. Circ Cardiovasc Qual Outcomes. 2024;17:e000131. doi:
Ovbiagele B, Sacco RL, Skolarus LE, Thrift AG; on behalf of the Ameri- 10.1161/HCQ.0000000000000131
can Heart Association Stroke Council; Council on Cardiovascular and 29. Creutzfeldt CJ, Longstreth WT, Holloway RG. Predicting decline and survival
Stroke Nursing; Council on Cardiovascular Radiology and Intervention; in severe acute brain injury: the fourth trajectory. BMJ. 2015;351:h3904.
Council on Clinical Cardiology; Council on Hypertension; Council on the doi: 10.1136/bmj.h3904
Kidney in Cardiovascular Disease; and Council on Peripheral Vascular 30. Cameron JI, Gignac MA. “Timing It Right”: a conceptual framework for
Disease. Strategies to reduce racial and ethnic inequities in stroke pre- addressing the support needs of family caregivers to stroke survivors from
paredness, care, recovery, and risk factor control: a scientific statement the hospital to the home. Patient Educ Couns. 2008;70:305–314. doi:
from the American Heart Association. Stroke. 2023;54:e371–e388. doi: 10.1016/j.pec.2007.10.020
10.1161/STR.0000000000000437 31. Goni-Fuste B, Pergolizzi D, Monforte-Royo C, Alonso-Babarro A, Belar A,
14. Ikeme S, Kottenmeier E, Uzochukwu G, Brinjikji W. Evidence- Crespo I, Güell E, Julià-Torras J, Moreno-Alonso D, Nabal Vicuña M, et al.
based disparities in stroke care metrics and outcomes in the Development of a guide to multidimensional needs assessment in the palli-
United States: a systematic review. Stroke. 2022;53:670–679. doi: ative care initial encounter (MAP). J Pain Symptom Manage. 2023;66:361–
10.1161/STROKEAHA.121.036263 369.e6. doi: 10.1016/j.jpainsymman.2023.07.011
15. Portanova J, Ailshire J, Perez C, Rahman A, Enguidanos S. Ethnic dif- 32. van Lummel EV, Ietswaard L, Zuithoff NP, Tjan DH, van Delden JJ. The
ferences in advance directive completion and care preferences: what utility of the surprise question: a useful tool for identifying patients nearing
has changed in a decade? J Am Geriatr Soc. 2017;65:1352–1357. doi: the last phase of life? A systematic review and meta-analysis. Palliat Med.
10.1111/jgs.14800 2022;36:1023–1046. doi: 10.1177/02692163221099116
16. Bailoor K, Shafie-Khorassani F, Lank RJ, Case E, Garcia NM, 33. Plinke WV, Buchbinder SA, Brumback LC, Longstreth WT, Kiker WA,
Lisabeth LD, Sanchez BN, Kim S, Morgenstern LB, Zahuranec DB. Time Holloway RG, Engelberg RA, Curtis JR, Creutzfeldt CJ. Identification of pal-
trends in race-ethnic differences in do-not-resuscitate orders after stroke. liative care needs and mental health outcomes among family members of
Stroke. 2019;50:1641–1647. doi: 10.1161/STROKEAHA.118.024460 patients with severe acute brain injury. JAMA Netw Open. 2023;6:e239949.
17. Prabhakaran S, Cox M, Lytle B, Schulte PJ, Xian Y, Zahuranec D, doi: 10.1001/jamanetworkopen.2023.9949
Smith EE, Reeves M, Fonarow GC, Schwamm LH. Early transition to com- 34. Quill TE, Holloway R. Time-limited trials near the end of life. JAMA.
fort measures only in acute stroke patients: analysis from the Get With 2011;306:1483–1484. doi: 10.1001/jama.2011.1413
The Guidelines–Stroke registry. Neurol Clin Pract. 2017;7:194–204. doi: 35. Kruser JM, Ashana DC, Courtright KR, Kross EK, Neville TH,
10.1212/cpj.0000000000000358 Rubin E, Schenker Y, Sullivan D, Thornton JD, Viglianti EM, et al. Defining

e84   February 2025 Stroke. 2025;56:e75–e86. DOI: 10.1161/STR.0000000000000479

 Creutzfeldt et al Palliative and End-of-Life Care in Stroke

the time-limited trial for patients with critical illness: an official American 55. Halpern SD. Goal-concordant care: searching for the holy grail. N Engl J
Thoracic Society workshop report. Ann Am Thorac Soc. 2024;21:187–199. Med. 2019;381:1603–1606. doi: 10.1056/NEJMp1908153

CLINICAL STATEMENTS
doi: 10.1513/AnnalsATS.202310-925ST 56. Bernacki RE, Block SD; American College of Physicians High Value Care

AND GUIDELINES
36. Saguil A, Phelps K. The spiritual assessment. Am Fam Physician. Task Force. Communication about serious illness care goals: a review and
2012;86:546–550. synthesis of best practices. JAMA Intern Med. 2014;174:1994–2003. doi:
37. Ali M, Tibble H, Brady MC, Quinn TJ, Sunnerhagen KS, Venketasubramanian N, 10.1001/jamainternmed.2014.5271
Shuaib A, Pandyan A, Mead G, on behalf of the VISTA Collaboration. Preva- 57. Rutz Voumard R, Kiker WA, Dugger KM, Engelberg RA, Borasio GD, Curtis JR,
lence, trajectory, and predictors of poststroke pain: retrospective analy- Jox RJ, Creutzfeldt CJ. Adapting to a new normal after severe acute brain
sis of pooled clinical trial data set. Stroke. 2023;54:3107–3116. doi: injury: an observational cohort using a sequential explanatory design. Crit
10.1161/STROKEAHA.123.043355 Care Med. 2021;49:1322–1332. doi: 10.1097/CCM.0000000000004947
38. Gélinas C, Bérubé M, Puntillo KA, Boitor M, Richard-Lalonde M, Bernard F, 58. Creutzfeldt CJ, Holloway RG. Treatment decisions for a future self: ethical
Williams V, Joffe AM, Steiner C, Marsh R, et al. Validation of the Critical- obligations to guide truly informed choices. JAMA. 2020;323:115–116. doi:
Care Pain Observation Tool–Neuro in brain-injured adults in the inten- 10.1001/jama.2019.19652
sive care unit: a prospective cohort study. Crit Care. 2021;25:142. doi: 59. Jackson VA, Emanuel L. Navigating and communicating about seri-
10.1186/s13054-021-03561-1 ous illness and end of life. N Engl J Med. 2024;390:63–69. doi:
39. Joffe AM, McNulty B, Boitor M, Marsh R, Gélinas C. Validation of the Critical- 10.1056/NEJMcp2304436
Care Pain Observation Tool in brain-injured critically ill adults. J Crit Care. 60. Taylor LJ, Nabozny MJ, Steffens NM, Tucholka JL, Brasel KJ,
2016;36:76–80. doi: 10.1016/j.jcrc.2016.05.011 Johnson SK, Zelenski A, Rathouz PJ, Zhao Q, Kwekkeboom KL, et al. A
40. Greenway MRF, Robinson MT. Palliative care approaches to acute framework to improve surgeon communication in high-stakes surgical
stroke in the hospital setting. Handb Clin Neurol. 2023;191:13–27. doi: decisions: best case/worst case. JAMA Surg. 2017;152:531–538. doi:
10.1016/B978-0-12-824535-4.00010-0 10.1001/jamasurg.2016.5674
41. Kendall M, Cowey E, Mead G, Barber M, McAlpine C, Stott DJ, Boyd K, 61. Kiker WA, Rutz Voumard R, Andrews LIB, Holloway RG, Brumback LC,
Murray SA. Outcomes, experiences and palliative care in major stroke: a mul- Engelberg RA, Curtis JR, Creutzfeldt CJ. Assessment of discordance between
ticentre, mixed-method, longitudinal study. CMAJ. 2018;190:E238–E246. physicians and family members regarding prognosis in patients with
doi: 10.1503/cmaj.170604 severe acute brain injury. JAMA Netw Open. 2021;4:e2128991. doi:
42. Meyerson D, Zuckerman D. Identity Theft: Rediscovering Ourselves After 10.1001/jamanetworkopen.2021.28991
Stroke. Andrews McMeel Publishing; 2019. 62. Miles NL, Abedini NC, Harris MH, Engelberg RA, Kross EK, Creutzfeldt CJ.
43. Wendlandt B, Olm-Shipman C, Ceppe A, Hough CL, White DB, Cox CE, Goals-of-care conversations after stroke survival. Stroke. 2024;55:e44–
Carson SS. Surrogates of patients with severe acute brain injury expe- e45. doi: 10.1161/STROKEAHA.123.046119
rience persistent anxiety and depression over the 6 months after 63. Green T, Gandhi S, Kleissen T, Simon J, Raffin-Bouchal S,
ICU admission. J Pain Symptom Manage. 2022;63:e633–e639. doi: Ryckborst K. Advance care planning in stroke: influence of time on engage-
10.1016/j.jpainsymman.2022.02.336 ment in the process. Patient Prefer Adherence. 2014;8:119–126. doi:
44. Anderson S, Marlett NJ. Communication in stroke: the overlooked rehabilita- 10.2147/PPA.S54822
tion tool. Age Ageing. 2004;33:440–443. doi: 10.1093/ageing/afh163 64. Skolarus LE, Brown DL, Reynolds E, Shi Y, Volow AM, Burke JF, Sudore RL.
45. Creutzfeldt CJ, Holloway RG, Curtis JR. Palliative care: a core com- Advance care planning engagement may increase among stroke survivors:
petency for stroke neurologists. Stroke. 2015;46:2714–2719. doi: results from the PREPARE for your care trial. Stroke. 2022;53:e477–e478.
10.1161/STROKEAHA.115.008224 doi: 10.1161/STROKEAHA.122.040386
46. Lyons KS, Lee CS. The theory of dyadic illness management. J Fam Nurs. 65. Johnson PD, Ulrich A, Siv J, Taylor B, Tirschwell D, Creutzfeldt CJ. Planning
Downloaded from http://ahajournals.org by on April 4, 2025

2018;24:8–28. doi: 10.1177/1074840717745669 after stroke survival: advance care planning in the stroke clinic. J Am Heart
47. Pucciarelli G, Lommi M, Magwood GS, Simeone S, Colaceci S, Vellone E, Assoc. 2019;8:e011317. doi: 10.1161/JAHA.118.011317
Alvaro R. Effectiveness of dyadic interventions to improve stroke patient- 66. Tsao CW, Aday AW, Almarzooq ZI, Anderson CAM, Arora P, Avery CL,
caregiver dyads’ outcomes after discharge: a systematic review and Baker-Smith CM, Beaton AZ, Boehme AK, Buxton AE, et al; on behalf of the
meta-analysis study. Eur J Cardiovasc Nurs. 2021;20:14–33. doi: American Heart Association Council on Epidemiology and Prevention Sta-
10.1177/1474515120926069 tistics Committee and Stroke Statistics Subcommittee. Heart disease and
48. Vranceanu AM, Bannon S, Mace R, Lester E, Meyers E, Gates M, Popok P, stroke statistics: 2023 update: a report from the American Heart Association.
Lin A, Salgueiro D, Tehan T, et al. Feasibility and efficacy of a resiliency Circulation. 2023;147:e93–e621. doi: 10.1161/CIR.0000000000001123
intervention for the prevention of chronic emotional distress among 67. Jackson G, Chari K. National Hospital Care Survey demonstration projects:
survivor-caregiver dyads admitted to the neuroscience intensive care stroke inpatient hospitalizations. Natl Health Stat Report. 2019;32:1–11.
unit: a randomized clinical trial. JAMA Netw Open. 2020;3:e2020807. doi: 68. Cowey E, Schichtel M, Cheyne JD, Tweedie L, Lehman R, Melifonwu R,
10.1001/jamanetworkopen.2020.20807 Mead GE. Palliative care after stroke: a review. Int J Stroke. 2021;16:632–
49. Schutz RE, Coats HL, Engelberg RA, Curtis JR, Creutzfeldt CJ. Is there 639. doi: 10.1177/17474930211016603
hope? Is she there? How families and clinicians experience severe acute 69. Govind N, Ferguson C, Phillips JL, Hickman L. Palliative care interventions
brain injury. J Palliat Med. 2017;20:170–176. doi: 10.1089/jpm.2016.0286 and end-of-life care as reported by patients’ post-stroke and their fami-
50. Monod SM, Rochat E, Büla CJ, Jobin G, Martin E, Spencer B. The spiri- lies: a systematic review. Eur J Cardiovasc Nurs. 2023;22:445–453. doi:
tual distress assessment tool: an instrument to assess spiritual dis- 10.1093/eurjcn/zvac112
tress in hospitalised elderly persons. BMC Geriatr. 2010;10:88. doi: 70. Saragih ID, Saragih IS, Tarihoran D, Sharma S, Chou FH. A meta-analysis
10.1186/1471-2318-10-88 of studies of the effects of case management intervention for stroke sur-
51. Ernecoff NC, Curlin FA, Buddadhumaruk P, White DB. Health care pro- vivors across three countries. J Nurs Scholarsh. 2023;55:345–355. doi:
fessionals’ responses to religious or spiritual statements by surrogate 10.1111/jnu.12822
decision makers during goals-of-care discussions. JAMA Intern Med. 71. Bakas T, McCarthy MJ, Miller EL. Systematic review of the evidence for
2015;175:1662–1669. doi: 10.1001/jamainternmed.2015.4124 stroke family caregiver and dyad interventions. Stroke. 2022;53:2093–
52. Torke AM, Callahan CM, Sachs GA, Wocial LD, Helft PR, Monahan PO, 2102. doi: 10.1161/STROKEAHA.121.034090
Slaven JE, Montz K, Burke ES, Inger L. Communication quality predicts psy- 72. Kavalieratos D, Harinstein ME, Rose B, Lowers J, Hoydich ZP, Bekelman DB,
chological well-being and satisfaction in family surrogates of hospitalized Allen LA, Rollman BL, Ernecoff NC, Moreines LT, et al. Primary palliative care
older adults: an observational study. J Gen Intern Med. 2018;33:298–304. for heart failure provided within ambulatory cardiology: a randomized pilot
doi: 10.1007/s11606-017-4222-8 trial. Heart Lung. 2022;56:125–132. doi: 10.1016/j.hrtlng.2022.07.002
53. Torke AM, Varner-Perez SE, Burke ES, Taylor TA, Slaven JE, Kozinski KL, 73. Bakitas MA, Dionne-Odom JN, Ejem DB, Wells R, Azuero A, Stockdill ML,
Maiko SM, Pfeffer BJ, Banks SK. Effects of spiritual care on well-being of Keebler K, Sockwell E, Tims S, Engler S, et al. Effect of an early pallia-
intensive care family surrogates: a clinical trial. J Pain Symptom Manage. tive care telehealth intervention vs usual care on patients with heart fail-
2023;65:296–307. doi: 10.1016/j.jpainsymman.2022.12.007 ure: the ENABLE CHF-PC randomized clinical trial. JAMA Intern Med.
54. Oshvandi K, Torabi M, Khazaei M, Khazaei S, Yousofvand V. Impact 2020;180:1203–1213. doi: 10.1001/jamainternmed.2020.2861
of hope on stroke patients receiving a spiritual care program in Iran: 74. Graney BA, Au DH, Baron AE, Cheng A, Combs SA, Glorioso TJ,
a randomized controlled trial. J Relig Health. 2024;63:356–369. doi: Paden G, Parsons EC, Rabin BA, Ritzwoller DP, et al. Advancing Symptom
10.1007/s10943-022-01696-1 Alleviation with Palliative Treatment (ADAPT) trial to improve quality of

Stroke. 2025;56:e75–e86. DOI: 10.1161/STR.0000000000000479 February 2025   e85

 Creutzfeldt et al Palliative and End-of-Life Care in Stroke

life: a study protocol for a randomized clinical trial. Trials. 2019;20:355. doi: acute care into the community. Stroke. 2021;52:e794–e805. doi:
10.1186/s13063-019-3417-1 10.1161/STROKEAHA.121.033938
CLINICAL STATEMENTS

75. Rogers JG, Patel CB, Mentz RJ, Granger BB, Steinhauser KE, Fiuzat M, 82. Cross SH, Kaufman BG, Warraich HJ. Trends in location of death for indi-
AND GUIDELINES

Adams PA, Speck A, Johnson KS, Krishnamoorthy A, et al. Palliative care viduals with cerebrovascular disease in the United States. JAMA Neurol.
in heart failure: the PAL-HF randomized, controlled clinical trial. J Am Coll 2019;76:1399–1401. doi: 10.1001/jamaneurol.2019.2566
Cardiol. 2017;70:331–341. doi: 10.1016/j.jacc.2017.05.030 83. Alonso A, Ebert AD, Dörr D, Buchheidt D, Hennerici MG, Szabo K. End-of-
76. Bekelman D, Feser W, Baron A, Parsons EC, Welsh CH, life decisions in acute stroke patients: an observational cohort study. BMC
Paden G, McBryde C, Cheng C, Turvey C, Au DH. Effect of a collabora- Palliat Care. 2016;15:38. doi: 10.1186/s12904-016-0113-8
tive palliative care intervention vs usual care on quality of life of patients 84. Kelly AG, Hoskins KD, Holloway RG. Early stroke mortality, patient prefer-
with symptomatic heart and lung diseases: the ADAPT random- ences, and the withdrawal of care bias. Neurology. 2012;79:941–944. doi:
ized clinical trial. Am J Respir Crit Care Med. 2022;205:A2369. 10.1212/WNL.0b013e318266fc40
10.1164/ajrccm-conference.2022.205.1_MeetingAbstracts.A2369 85. Blinderman CD, Billings JA. Comfort care for patients dying in the hospital.
77. American Heart Association. Palliative Care. Accessed June 6, 2024. https:// N Engl J Med. 2015;373:2549–2561. doi: 10.1056/NEJMra1411746
www.stroke.org/en/life-after-stroke/recovery/managing-your-stroke/ 86. Ramsburg H, Moriarty HJ, MacKenzie Greenle M. End-of-life symp-
palliative-care toms in adult patients with stroke in the last two years of life: an
78. American Heart Association. Family Caregivers. Accessed June 6, 2024. integrative review. Am J Hosp Palliat Care. 2024;41:831–839. doi:
https://www.stroke.org/en/help-and-support/for-family-caregivers 10.1177/10499091231197657
79. American Heart Association. Help and Support. Accessed June 6, 2024. 87. Ferris FD, von Gunten CF, Emanuel LL. Competency in end-of-
https://www.stroke.org/en/help-and-support life care: last hours of life. J Palliat Med. 2003;6:605–613. doi:
80. Cameron JI, Naglie G, Gignac MAM, Bayley M, Warner G, 10.1089/109662103768253713
Green T, Czerwonka A, Huijbregts M, Silver FL, Phillips SJ, et al. Ran- 88. Moons L, De Roo ML, Deschodt M, Oldenburger E. Death rattle: current
domized clinical trial of the Timing it Right Stroke Family Support experiences and non-pharmacological management: a narrative review. Ann
Program: research protocol. BMC Health Serv Res. 2014;14:18. doi: Palliat Med. 2024;13:150–161. doi: 10.21037/apm-23-507
10.1186/1472-6963-14-18 89. Centers for Medicare & Medicaid Services. Hospice Determining Terminal
81. Camicia M, Lutz B, Summers D, Klassman L, Vaughn S. Nursing’s Status. Accessed April 1, 2024. https://www.cms.gov/medicare-coverage-
role in successful stroke care transitions across the continuum: from database/view/lcd.aspx?LCDId=34538
Downloaded from http://ahajournals.org by on April 4, 2025

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