Core Curriculum

Kidney Supportive Care: Core Curriculum 2020

Samantha L. Gelfand, Jennifer S. Scherer, and Holly M. Koncicki

Kidney supportive care is the application of palliative medicine principles and practices to patients with Complete author and article
kidney disease. The goal is alleviation of suffering through treatment of symptoms, empathic information appears at the
end of the article.
communication, and support for psychosocial distress. Kidney supportive care includes primary
palliative care provided by nephrology teams, as well as referral of patients with complex distress for Am J Kidney Dis. XX(XX):1-
comanagement by an interprofessional specialty palliative care team, when available. The team may 14. Published online Month
XX, XXXX.
include physicians, nurses, social workers, chaplains, and dieticians. Comanagement with nephrolo-
gists offers an additional layer of support to patients and families as prognostic awareness, patient doi: 10.1053/
preferences, and care decisions are explored. Kidney supportive care can be offered to patients [Link].2019.10.016
experiencing acute kidney injury or chronic kidney disease, including those with kidney failure treated © 2019 by the National
by kidney replacement therapy (dialysis and transplantation). Kidney supportive care includes but is not Kidney Foundation, Inc.
limited to end-of-life care. This installment of the Core Curriculum in Nephrology outlines several
practical applications of kidney supportive care, with a focus on the nephrologist’s approach to
symptom management, active medical management of kidney failure without dialysis (also known as
comprehensive conservative care), acute kidney injury in seriously ill patients, and withdrawal from
dialysis.

Historical Context and Relevance of preferences, and in some cases, the option of FEATURE EDITOR:
Kidney Supportive Care managing advancing disease without dialysis, Asghar Rastegar
Kidney supportive care is palliative care for which has been called “maximal” or “active”
patients with kidney disease. It is a growing or “nondialytic” medical management, “con- ADVISORY BOARD:
servative kidney management,” “comprehen- Ursula C. Brewster
subspecialty of the field of nephrology, like Michael Choi
transplantation nephrology or onconephrol- sive conservative care,” or simply
Ann O’Hare
ogy, but unlike those, it can be applied to all “conservative care.” These terms are inter- Manoocher Soleimani
patients living with advanced kidney disease changeable, and in this discussion we use
from any cause and on any dialysis modality. “active medical management” and “compre- The Core Curriculum
Similar to palliative care in oncology, the goal hensive conservative care” for their emphasis aims to give trainees
on holistic ongoing care. in nephrology a
is reduction of suffering throughout the tra- strong knowledge
jectory of illness, including (but not limited To understand the relevance of kidney base in core topics in
to) the end of life. Kidney supportive care is supportive care, it is essential to understand the specialty by
ideally provided through collaboration of ne- the evolving epidemiology of kidney dis- providing an over-
ease, which is particularly remarkable in the view of the topic and
phrologists (who use “primary palliative care”
citing key references,
skills) and palliative care specialists, whose realm of dialysis. Since maintenance dialysis including the founda-
approach usually includes an interprofessional for kidney failure became available in the tional literature that
team with nurses, social workers, dieticians, 1960s (and universally covered in the led to current clinical
and chaplains (Table 1). United States by the Social Security approaches.
Randomized prospective trials in the fields Amendments of 1972), the patient popula-
of oncology, heart failure, and others have tion treated by nephrologists has become
shown substantial improvements in quality of older and more ill. In 1978, 25% of incident
life, functional status, depression, and anxiety dialysis patients were 65 years or older and
for people treated with palliative care as only 10% had diabetes. By 2016, 50% of
compared with standard specialty care alone. incident dialysis patients in the United States
Though many imagine that palliation in were older than 65 years, 23% were older
nephrology amounts to stopping dialysis and than 75 years, and 47% had kidney failure
hospice care, kidney supportive care is much attributed to diabetes. Some also have
broader, with numerous areas of focus that are debilitating and life-limiting illnesses at the
applicable to patients across the illness spec- time of dialysis initiation, such as cancer,
trum (Fig 1). This includes intensive physical cardiovascular disease, and dementia.
symptom management, heightened attention Though early legislation may have intended
to nonphysical dimensions of suffering, iter- to increase access to dialysis as a bridge to
ative and patient-centered explorations of transplantation or renal recovery, today
prognostic awareness, elicitation of patient dialysis in the United States is often a

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Table 1. Primary and Specialty Palliative Care in Nephrology

Primary Palliative Care by Specialty Palliative Care
Domain of Care Nephrology Team Consultation
Symptom management Routine symptom assessment and treatment Refractory symptom treatment, including pain,
neuropathy, itch, nausea, and anxiety/depression
Decision making Communication about patient priorities, Assistance with navigation of complex clinical
prognosis, dialysis modality options situations or interpersonal dynamics
Interdisciplinary team Screening for social, spiritual, or nutritional Access to dieticians, chaplains, and social workers
support distress trained in palliation
Conservative care Medical CKD management with focus on Assistance with advance care planning and end of life
quality of life care
Abbreviation: CKD, chronic kidney disease.
Based on information presented in Quill and Abernethy, 2013 (N Engl J Med. [Link]

“destination” therapy by which life is prolonged but (Kidney Disease: Improving Global Outcomes) contro-
health and function are not always restored. versies conference on supportive care, where they defined
In the past 2 decades, recognition has increased that fundamental principles and competence domains. These
patients with advanced age or comorbid illnesses expe- included: (1) identification of patients most likely to
rience high mortality rates and high symptom burdens benefit from supportive care, (2) symptom assessment and
on dialysis. Their survival is worse than for many can- management, (3) communication of prognosis, (4) shared
cers. Patients who start dialysis at age 75 years have on decision making to advance goal-concordant care, and (5)
average 1- and 3-year adjusted survivals of 63% and effective use of local palliative medicine and hospice re-
33%, respectively. Furthermore, among patients older sources. It is important to emphasize that these domains
than 80 years, some observational studies have shown are applicable to patients across the continuum of illness
no survival benefit with starting dialysis as compared severity and chronicity, including patients with acute
with active medical management. For this reason, the kidney injury (AKI) and chronic kidney disease (CKD)
election of a nondialytic approach for patients with who are not receiving dialysis and patients with kidney
advanced age or frailty is gaining acceptance. However, transplants.
comprehensive conservative care is not yet a well- Kidney supportive care programs are most robust in
established component of nephrology fellowship edu- Canada, the United Kingdom, Australia, New Zealand,
cation or routine practice. and Hong Kong. Limitations to widespread imple-
To raise awareness and fuel a global effort to develop mentation in the United States include misperceptions of
kidney supportive care, in 2013, international leaders in palliative medicine, inadequate training and modeling
palliative care and nephrology convened at a KDIGO of these skills, limited access to and number of palliative

Kidney Supporve Care

Symptom Management End of Life Care

Physical Opmal use of hospice
Psychological Maximize dignity
Spiritual / Existenal Bereavement support

Expert Communicaon Opon of Comprehensive Conservave Care

Prognosis sharing Connue CKD care without dialysis
Shared decision-making Maximize quality and quanty of life
Advance care planning

Interdisciplinary Team Support

Nephrologist
Palliave Care Specialist
Nurse
Diecian
Chaplain
Social Worker

Figure 1. Domains of kidney supportive care. Abbreviation: CKD, chronic kidney disease.

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care experts, and financial systems that do not incen- Table 2. Symptoms in Patients With End-Stage Kidney Disease
tivize palliative metrics. However, the serious nature of on Dialysis and Active Medical Management
advanced kidney disease coupled with high mortality Prevalence in Prevalence in Patients
and high symptom burden necessitates the inclusion of Patients on on Comprehensive
supportive care as a standard component of all HD in the Conservative Care
nephrology practice. Symptom United States in the United Kingdom
Fatigue/ 68% 75%
weakness
Additional Readings
Dry skin 72% 35%
► Combs SA, Culp S, Matlock DD, et al. Update on end-of-life
care training during nephrology fellowship: a cross-sectional Pruritus 54% 56%
national survey of fellows. Am J Kidney Dis. 2015;65(2):233- Pain (bone or 50% 56%
239. + ESSENTIAL READING joint)
► Davison SN, Levin A, Moss AH, et al. Executive summary of the Dry mouth 45% 20%
KDIGO Controversies Conference on Supportive Care in Insomnia 44% 36%
Chronic Kidney Disease: developing a roadmap to improving Muscle cramps 43% NR
quality care. Kidney Int. 2015;88(3):447-459. Diarrhea 17% 11%
► Quill TE, Abernethy AP. Generalist plus specialist palliative care- Worrying/anxiety 28% 42%
—creating a more sustainable model. N Engl J Med. Shortness of 19% 49%
2013;368(13):1173-1175. + ESSENTIAL READING breath
► Tamura MK, Meier DE. Five policies to promote palliative care for Decreased 29% 58%
patients with ESRD. Clin J Am Soc Nephrol. 2013;8(10):1783- appetite
1790. Feeling sad or 24% 33%
depressed
Restless legs 29% 24%
Symptom Management
Nausea 26% 36%
“I will apply, for the benefit of the sick, all measures Constipation 21% 42%
[that] are required, avoiding those twin traps of over- Vomiting 11% 25%
treatment and therapeutic nihilism” – Modernized Abbreviations: HD, hemodialysis; NR, not reported.
Prevalence data for HD patients based on Weisbord et al, 2005 (J Am Soc
Hippocratic Oath, revised by Louis Lasagna Nephrol. [Link] for comprehensive conser-
vative care patients, on Murphy et al, 2009 (Nephron Clin Pract. [Link]
Patients with advanced kidney disease experience a high 0.1159/000183177).
frequency of physical and psychological symptoms, com-
parable to patients with cancer (Table 2). There is evidence
require annual symptom assessments such as the Kidney
that nephrologists underrecognize and undertreat these
Disease Quality of Life instrument, therapeutic intervention is
symptoms. A cornerstone of kidney supportive care is
variable.
symptom management, which can be accomplished across
a multitude of care settings, including clinics, hospitals,
Additional Readings
and dialysis units.
► Davison SN, Jassal SV. Supportive care: integration of patient-
centered kidney care to manage symptoms and geriatric
Symptom Assessment Tools syndromes. Clin J Am Soc Nephrol. 2016;11(10):1882-1891.
Patients underreport symptoms unless asked explicitly + ESSENTIAL READING
about them, and there are robust data that regular as- ► Murphy EL, Murtagh FEM, Carey I, Sheerin NS. Understanding
sessments with validated tools can reduce symptom symptoms in patients with advanced CKD managed without
burden over time. Options for assessment tools are listed dialysis: use of a short patient-completed assessment tool.
Nephron Clin Pract. 2009;111(1):c74-c80.
in Box 1. In programs in Australia, the United Kingdom,
and Canada, nurses and advanced practice providers
conduct periodic symptom assessments with patients
and families. In the United States, a few academic cen- Box 1. Symptom and Function Assessment Tools
ters have devised similar programs, mostly led by ne- • Edmonton Symptom Assessment Revised: Renal (ESAS-
phrologists who are dual trained in nephrology and Renal) ([Link]
palliative medicine. [Link])
In general, the approach to symptom management should • Integrated Palliative Care Outcome Scale Renal (IPOS-
involve evaluation for cause, reversible factors, level of Renal) ([Link]
distress or dysfunction caused by symptoms, non- • Dialysis Symptom Index (DSI) ([Link]/article/
pharmacologic and pharmacologic intervention options, S0885-3924(03)00517-7/fulltext)
expectation management, and acknowledgement of limita- • Karnofsky Performance Status (KPS) score ([Link]
tions of therapy. Of note, at this time there are no financial [Link]/files/news/karnofsky_performance_scale.pdf)
• Eastern Cooperative Oncology Group (ECOG) (https://
incentives related directly to symptom control among patients
[Link]/resources/ecog-performance-status)
receiving dialysis. Although large dialysis organizations

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► Weisbord SD, Fried LF, Mor MK, et al. Renal provider recognition (RCTs) confirm its efficacy, it is not available as a generic
of symptoms in patients on maintenance hemodialysis. Clin J Am and therefore can be prohibitively expensive. Gabapentin,
Soc Nephrol. 2007;2(5):960-967. + ESSENTIAL READING
for which there is a generic version, is used off label.
Alternatives include selective serotonin-norepinephrine
Neuropathy reuptake inhibitors such as duloxetine and tricyclic anti-
depressants such as amitriptyline. Potential adverse effects
Case 1: A 48-year-old man with autosomal dominant
polycystic kidney disease who received a deceased donor
and recommended starting doses are outlined in Table 3.
kidney transplant develops posttransplantation lymphoproli- In patients with CKD, it is essential to start with low doses
ferative disorder. He is treated with R-CHOP (rituximab, and uptitrate slowly because adverse effects can be
cyclophosphamide, doxorubicin, vincristine, and prednisone), dangerous. Furthermore, toxicity from inappropriate
which eventually leads to remission of the post- dosing can cause aversion and mistrust in both the patient
transplantation lymphoproliferative disorder. However, to- and provider toward these effective medications.
ward the end of his treatment he develops severe pain in his For severe or refractory neuropathic pain, referral to a
feet and hands. The pain is bilateral, worse at night, and feels palliative care or pain management specialist may be
like “electric shocks.” It prevents him from sleeping. helpful for access to advanced therapies, including trials
Vincristine-related neuropathy is diagnosed. of opioids, lidocaine, and ketamine. Of the opioids,
hydromorphone, fentanyl, and methadone are safest in
Question 1: Which of the following is NOT a thera-
the setting of decreased glomerular filtration rate (GFR),
peutic tool for the treatment of neuropathy?
a) Gabapentin
and methadone has the most efficacy for neuropathic pain
b) Subcutaneous lidocaine due to its antagonism of the NMDA (N-methyl-D-aspar-
c) Methadone tate) receptor. Of note, heightened awareness of the
d) Duloxetine harms of opioids has led to recommendations by medical
e) Ketorolac societies to avoid or deprescribe opioids in chronic
noncancer pain conditions. Among all patients with
For the answer to the question, see the following text.
serious illness, including those with advanced kidney
disease, the potential risks and benefits of therapy need to
be considered in the individual context of each patient.
Neuropathy is common in patients with kidney dis- Close monitoring for adverse effects, functional goal
ease. Distinct from nociceptive pain, which is triggered setting, and careful dose titration are all standard parts of
by tissue damage and resolves when the tissue has specialty palliative care.
healed, neuropathic pain results from damage to or Nonsteroidal anti-inflammatory drugs such as ketor-
pathology within the nervous system. Although the olac have no established role in the treatment of neu-
most common cause of neuropathic pain in patients ropathy, but many pain syndromes are a mix of
with kidney disease is diabetes mellitus, there are a nociceptive and neuropathic pain. Recently, in the
variety of other causes, including degenerative joint context of heightened awareness of the potential harms
diseases, stroke, chemotherapy, and paraneoplastic of opioids, there has been increasing enthusiasm for
conditions. trialing nonsteroidal anti-inflammatory drugs in select
The first step in treating neuropathy is determining situations. However, they would not be an effective
the cause. If caused by a nerve root compression, such as choice for the patient in this case. The correct answer to
lumbar radiculopathy (“sciatica”) or median nerve question 1 is therefore (e).
compression (carpal tunnel syndrome), pharmacologic With specific regard to chemotherapy-related neu-
management is usually ineffective and therapeutic op- ropathy, knowing the natural history of the pain syn-
tions include surgery, steroid injections or neurolytic drome can facilitate shared decision making among
blocks, and supportive measures (bracing, ice, etc). nephrologists, oncologists, and patients regarding the
Neuropathy that affects diffuse distal nerve fibers, need for intervention versus watchful waiting.
including the symmetric distal peripheral neuropathy of With vincristine-related neuropathy, symptoms are dose
diabetes and medication toxicity, is more amenable to dependent and usually reversible, with improvement
pharmacotherapy. seen gradually over months after discontinuation of the
Borrowing from the stepwise treatment approach that drug.
has been recommended for neuropathy in the general
population and taking into consideration metabolism
differences and adverse effects in patients with kidney
Additional Readings
disease, the first-line pharmacologic treatment for neu-
► Davison SN. Clinical pharmacology considerations in pain man-
ropathy is a calcium channel alpha-2-delta ligand (gaba-
agement in patients with advanced kidney failure. Clin J Am Soc
pentin or pregabalin). While pregabalin is approved by Nephrol. 2019;14(6):917-931. + ESSENTIAL READING
the US Food and Drug Administration for diabetic neu- ► Davison SN, Koncicki H, Brennan FP. Pain in chronic kidney dis-
ropathy and data from randomized controlled trials ease: a scoping review. Semin Dial. 2014;27(2):188-204.

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Table 3. Treatments for Neuropathy in Patients With Kidney Disease

Most Common
Class Agents Starting Doses Adverse Effects
Calcium channel Gabapentin Gabapentin: 100 mg daily at night (if on dialysis, Dizziness, drowsiness, edema,
alpha-2-delta ligandsa Pregabalin reduce to 100 mg 3×/wk after dialysis) ataxia
Pregabalin: 25 mg daily at night (if on dialysis,
reduce to 25 mg 3×/wk after dialysis)
Serotonin- Duloxetine Duloxetine: 30 mg daily (if on dialysis, avoid) Headache, drowsiness, dry mouth,
norepinephrine Venlafaxine (extended Venlafaxine: 37.5 mg daily nausea, insomnia, withdrawal
reuptake inhibitors release) Tramadol: 50 mg every 8-12 h syndromes
Tramadol
Tricyclic Amitriptyline 10 mg daily at night Dry mouth, urinary retention,
antidepressants blurred vision, change in libido,
dizziness, weight gain, insomnia
Voltage-gated sodium Lidocaineb Lidocaine: weight-based Dizziness, ataxia, nervousness,
channel blockers Mexileteneb Mexiletene: 150 mg 1-2×/d tremor, arrhythmia
Opioids Methadoneb 2.5 mg every 8-12 h Constipation, weight gain,
delirium, sexual dysfunction,
prolonged QTc
Topical agents Lidocaine patch Lidocaine: 1 patch every 12 h; can wear up Numbness (lidocaine), burning
Capsaicin to 3 patches at a single time (capsaicin)
Capsaicin: 0.025% ointment, compounded with
menthol when available
a
Caution and close monitoring are recommended with any off-label use of calcium channel alpha-2-delta ligands.
b
Referral recommended to pain management specialist.

► Finnerup NP, Attai N, Haroutounian, S, et al. Pharmacotherapy for mood, sleep quality, interpersonal relationships, and
neuropathic pain in adults: a systematic review and meta-analysis. overall health-related quality of life. Among patients
Lancet Neurol. 2015;14(2):162-173.
receiving dialysis, moderate to severe pruritus has been
associated with a 17% higher mortality rate. Although
Pruritus
pruritus may not be easy to cure, several small RCTs have
Case 2: A 63-year-old woman with advanced CKD from shown that it can improve with treatment. Most impor-
hypertensive nephrosclerosis presents for follow-up in the tantly, decreasing the intensity of itch has shown to
clinic. She is active on a waiting list for a kidney transplant. correlate with a significant improvement in health-related
Her energy level is good and she is still working. She is quality of life.
eating well and her weight has been stable, with no hiccups, The pathogenesis of uremic pruritus has been eluci-
nausea, vomiting, or dysgeusia. Her main concern is itch, dated by recent advances in cutaneous neurophysiology.
which affects her upper arms, thighs, chest, and back. It is
The sensation of itch is transmitted by myelinated A-delta
worse at night and after showers. On physical examination,
there is no rash. The skin is dry and there are scattered ex-
afferent nerves and unmyelinated C-fibers, of which a
coriations. Laboratory study results include the following minority (10%) are histaminergic and a majority (90%)
values: serum creatinine, 4.1 mg/dL (corresponding to an are histamine-independent. The neurotransmission of itch
estimated GFR of 11 mL/min/1.73 m2 as calculated using through these C-fibers is complex and likely related to the
the CKD-EPI equation); potassium, 4.2 mg/dL; bicarbonate, uremic alterations in the immunochemical milieu of the
22 mEq/L; serum urea nitrogen, 39 mg/dL; hemoglobin, epidermal and dermal skin layers.
11.1 g/dL on treatment with a monthly erythropoiesis- The therapeutic implications of this complex patho-
stimulating agent; serum albumin, 3.9 mg/dL; phosphorus, genesis are important. Antihistamines such as diphen-
5.3 mg/dL; and parathyroid hormone, 95 pg/mL. hydramine are commonly prescribed but they do not
target the underlying pathophysiology. Although some
Question 2: What is the best next step? patients depend on them to “get through” a dialysis
a) Initiate dialysis
treatment, this may stem primarily from their sedative
b) Refer to dermatology
c) Treat with topical emollients and low-dose gabapentinoids
properties rather than actual alleviation of itch. In a
d) Treat with evening primrose oil recent analysis of DOPPS (Dialysis Outcomes and Prac-
e) Start UV light treatment tice Patterns Study) data, more than two-thirds of sur-
veyed medical directors in 17 different countries
For the answer to the question, see the following text. underestimated the prevalence of pruritus among pa-
tients in their facilities, and 57% used oral antihista-
mines as first-line long-term therapy.
Not only is itch common among people living with A clinical approach to pruritus is outlined in
kidney disease, it is often severe enough to influence Figure 2. The first step is to confirm the diagnosis by

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Rash
Consider other diagnoses
Consider dermatology referral
History Treatments with Limited
Locaon Evidence-Based Off-Label Efficacy Data

Refractory
Pharmacologic Treatments

Persistent
Exacerbang/ Nonpharmacologic Topical capsaicin 0.025% +

Pruritus

Pruritus
alleviang factors of Uremic Pruritus menthol 4%
Treatments of
Degree of distress Gabapennb 100 mg aer Topical cromolyn sodium 4% Iterave
Uremic Pruritus
HD or every other day UV-B phototherapy Symptom
Physical Exam Daily topical Increase by 100 mg, up to Evening primrose oil 1000 mg/d Review
Dryness emollient max 300 mg QHS Sertraline 50 mg/d and Therapy
Excoriaons Avoidance of
Prebabalin 25 mg aer HD μ opioid receptor antagonist/ Adjustment
Presence of rash extremes of
or QOD k receptor agonists (nalbuphine
Lab Review temperature 120 mg/d)
Increase by 25 mg up to
Phosphate, PTH, max 75 mg daily k opioid receptor agonists
Kt/V, LFTs (nalfurafine 2.5 mcg/d)
Abnormal Labs
Opmize phosphorus control and dialysis adequacya
If LFTs are abnormal, consider other diagnoses

Figure 2. Treatment approach for uremic pruritus. aCommon clinical practice despite lack of evidence that hyperphosphatemia, hy-
perparathyroidism, or increasing Kt/V over usual adequacy standards has any relationship to the sensation or alleviation of pruritus.
b
Caution and close monitoring is recommended with any off-label use of calcium channel alpha-2-delta ligands. Abbreviations: HD,
hemodialysis; Lab, laboratory; LFTs, liver function tests; PTH, parathyroid hormone; QHS, every bedtime; QOD, every other day.

history and physical examination. The distribution of A key component of treating uremic pruritus is setting
uremic itch is almost always in large discontinuous expectations. It is highly likely that therapy will need to be
bilateral skin areas involving the arms, legs, and torso. adjusted after initiation, as in hypertension.
On physical examination, the most common skin
finding in uremic pruritus is normal epidermis, with Additional Readings
possible dryness or superficial excoriations. Presence of ► Brennan FP, Josland E, Kelly JJ. Chronic pruritus: histamine is not
a rash suggests a primary dermatologic condition and always the answer! J Pain Symptom Manage. 2015;50(4):566-
warrants referral to dermatology. When uremic pruritus 570. + ESSENTIAL READING
► Combs SA, Teixeira JP, Germain MJ. Pruritus in kidney disease.
is confirmed, treatment options must be tailored to the
Semin Nephrol. 2015;35(4):383-391.
individual patient. All patients with pruritus, even those ► Lau T, Leung S, Lau W. Gabapentin for uremic pruritus in he-
without evident xerosis, should be advised to apply a modialysis patients: a qualitative systematic review. Can J Kidney
daily over-the-counter emollient and reapply after Health Dis. 2016;3:1-14.
bathing. Bathing in tepid (rather than hot) water may ► Pisoni RL, Wikstrom B, Elder SJ, et al. Pruritus in haemodialysis
also reduce itch. In addition to moisturizers, data sug- patients: international results from the Dialysis Outcomes and
gest that lotions with pramocaine (a topical anesthetic, Practice Patterns Study (DOPPS). Nephrol Dial Transplant.
2006;21(12):3495-3505. + ESSENTIAL READING
also known as pramoxine) alleviate pruritus better than
► Rayner HC, Larkina M, Wang M, et al. International comparisons
other moisturizing emollients. of prevalence, awareness, and treatment of pruritus in people on
If itch persists, the next step is to try low-dose gaba- hemodialysis. Clin J Am Soc Nephrol. 2017;12(12):2000-2007.
pentin or pregabalin. Although both have been shown to ► Scherer JS, Combs SA, Brennan F. Sleep disorders, restless legs
reduce pruritus significantly in small RCTs, it is important syndrome, and uremic pruritus: diagnosis and treatment of com-
to note that neither is approved by the US Food and Drug mon symptoms in dialysis patients. Am J Kidney Dis.
Administration for this indication. Low doses are appro- 2017;69(1):117-128. + ESSENTIAL READING
priate for people with kidney disease. The dosage or fre-
quency can be increased as needed and tolerated, with Depression
careful adjustment for GFR. It is essential to monitor for
Case 3: A 71-year-old woman receiving in-center hemodi-
signs of toxicity, including dizziness, changes in mental
alysis has frequent hospitalizations due to problems with her
status, myoclonus, and swelling. There is no superiority of right arm fistula. She has long-term occlusion of the central
one agent over the other, and their adverse effects are vessels on the left and a recurrent central venous stenosis on
comparable. Patient preference and financial cost should the right that has required frequent angioplasties. She is ul-
therefore guide initial agent selection. The correct answer timately advised to undergo temporary dialysis catheter
to question 2 is (c). placement and evaluation for a new vascular access in a

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lower extremity. The hemodialysis unit staff notice that her

Many nephrology providers see the treatment of
affect has changed; she is disengaged, terse, and irritable. depression as outside their scope of practice and believe it
She is initially reluctant to talk about her mood, but subse- should be addressed by primary care physicians or psy-
quently shares that she feels depressed, like she is “trapped chiatrists. This is problematic because many patients
in a nightmare.” receiving hemodialysis do not have a primary care physi-
cian and access to mental health providers is variable.
Question 3: Which of the following is false? However, therapeutic nihilism is doubtful; in a survey of
a) Many patients receiving dialysis attribute their psycholog- nephrology fellows, 84% “generally or completely agreed”
ical distress to acute and chronic health problems rather that depression is treatable in the context of serious illness.
than depression The correct answer to question 3 is (e).
b) It is a national requirement that all dialysis units conduct
SSRIs are considered first-line pharmacotherapy for
annual depression screenings and report a therapeutic
plan
depression in kidney disease. Most antidepressants are
c) Most antidepressants are metabolized by the liver and are highly protein bound and predominantly metabolized by
highly protein bound, therefore not highly dialyzable the liver. In a systematic review of antidepressants in CKD,
d) RCTs have shown efficacy of selective serotonin reuptake clearance was noted to be markedly reduced for paroxetine
inhibitors (SSRIs) over placebo for depression in patients but no other SSRIs, tricyclic antidepressants, or selective
receiving dialysis serotonin-norepinephrine reuptake inhibitors. No antide-
e) Most nephrologists believe that depression is not treatable pressant was found to be cleared significantly by dialysis.
in the context of serious illness Efficacy data for depression treatment in patients
For the answer to the question, see the following text. with kidney disease are mixed (Table 4). Two recent
RCTs of SSRIs include CAST (CKD Antidepressant Ser-
traline Trial), in which sertraline did not significantly
improve depression at 12 weeks follow-up in patients
Mental illness, including depression, is common with CKD, and ASCEND (A Trial of Sertraline vs
among patients with kidney disease and associated with Cognitive Behavioral Therapy for ESRD Patients With
poor health outcomes. Among patients receiving dialysis, Depression), in which sertraline conferred a modest but
depression is associated with increased mortality, higher statistically significant benefit for patients receiving
hospitalization rates, longer lengths of stay, and higher dialysis compared with cognitive behavioral therapy,
rates of suicide. It also often occurs as part of a “symp- which is psychotherapy that focuses on negative emo-
tom cluster” along with pain and fatigue, all of which are tions, subconscious associations, and maladaptive be-
consistently rated as highly distressing by patients. haviors. Other small RCTs have demonstrated the
In 2018, the Centers for Medicare & Medicaid Services End- effectiveness of cognitive behavioral therapy and exer-
Stage Renal Disease (ESRD) Quality Improvement Program cise therapy compared to routine dialysis care alone.
(QIP) mandated reporting of annual depression screening and Unfortunately, many of these therapies are not readily
follow-up plans in all patients receiving dialysis. Many self- available at nephrology clinics or dialysis centers.
reporting tools, such as the Patient Health Questionnaire One of the aims of kidney supportive care is to integrate
(PHQ-2 and PHQ-9) and the Beck Depression Inventory, have specialty mental health services into nephrology care. This
been validated in patients with CKD, including those with includes increasing access to psychiatrists, therapists,
kidney failure. It is noteworthy that some somatic symptoms counselors, and integrative medicine services. Addition-
common in advanced kidney disease, such as fatigue, ally, though pharmacotherapy may be appropriate in some
insomnia, and poor appetite, are nonspecific and may create a cases, it is important to avoid medicalization of suffering
“positive screen” without actual dysthymia. that might be soothed by intensification of psychosocial or
One in 5 patients receiving dialysis will have an episode spiritual support. The multidisciplinary interprofessional
of major depression, but <25% receive treatment. Barriers approach deployed by most specialty palliative care teams
include limited access to specialty mental health care, ne- can be very useful in this regard.
phrologists’ reluctance to treat depression, and patient
reluctance to accept treatment. Patients cite many reasons Additional Readings
for this, including polypharmacy, skepticism, and un- ► Cukor D, Ver Halen N, Asher DR et al. Psychosocial intervention
willingness to spend additional time interfacing with the improves depression, quality of life, and fluid adherence in he-
health care system. In one study, among patients receiving modialysis. J Am Soc Nephrol. 2014;25(1):196-206.
dialysis who screened positive for depression who were ► Hedayati SS, Gregg LP, Carmody T, et al. Effect of sertraline on
not already on therapy, 91% did not accept recommen- depression symptoms in patients with chronic kidney disease
dations to start depression treatment because they attrib- without dialysis dependence: the CAST randomized clinical trial.
JAMA. 2017;318(19):1876-1890.
uted their depressed mood to an acute event, chronic
► Hedayati SS, Yalamanchili V, Finkelstein FO. A practical approach
illness, or dialysis itself. Furthermore, among patients who to the treatment of depression in patients with chronic kidney
agreed to start pharmacotherapy, 61% of renal providers disease and end-stage renal disease. Kidney Int. 2012;81(3):247-
were unwilling to prescribe antidepressants. 255. + ESSENTIAL READING

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Table 4. RCTs on Depression Treatments in Kidney Disease

Patient Follow-
Therapy RCT Intervention Population up Outcome
Selective Hedayati et al, 2017 (JAMA. Sertraline (initial dose 50 mg 201 pts 12 wk No improvement in depressive
serotonin [Link] daily) vs placebo with CKD symptom severity determined
reuptake jama.2017.17131) not on by 16-item QIDS-C score
inhibitor dialysis
(SSRIs) Mehrotra et al, 2019 (Ann Phase 1: engagement interview Phase 1: 12 wk Phase 1: no change in pt
Intern Med. [Link] with trained therapist vs control 184 pts on willingness to start therapy for
org/10.7326/M18-2229) Phase 2: sertraline (initial dose HD depression
25 mg daily) vs CBT (10 Phase 2: Phase 2: sertraline more
sessions of 1 h over 12 wk 120 pts on effective than CBT in lowering
during HD) HD depressive symptom severity
(by QIDS-C score)
Cognitive Duarte et al, 2009 (Kidney Int. CBT (12 weekly chairside 85 pts on 9 mo CBT reduced depression
behavioral [Link] sessions led by trained HD symptoms
therapy pubmed/19455196) psychologist) vs routine care
(CBT)
Cukor et al, 2014 (J Am Soc CBT (10 weekly chairside 59 pts on 6 mo CBT reduced depression
Nephrol. [Link] sessions led by psychologist HD symptoms, overall quality of life,
0.1681/ASN.2012111134) and supervised psychology and interdialytic weight gain
trainees) vs routine care
Exercise Giannaki et al, 2013 (Nephrol Intradialytic cycling vs routine 24 pts on 6 mo Exercise reduced depression
Dial Transplant. [Link] care HD symptoms
org/10.1093/ndt/gft288)
Kouidi et al, 2010 (Eur J Intradialytic cycling vs routine 44 pts on 1 y Exercise decreased depression
Cardiovasc Prev Rehabil. care HD symptoms
[Link]
0b013e32833188c4)
Note: There are no or minimal data for other drug classes, including tricyclic antidepressants, selective serotonin-norepinephrine reuptake inhibitors, mirtazapine, and
bupropion.
Abbreviations: CBT, cognitive behavioral therapy; CKD, chronic kidney disease; HD, hemodialysis; QIDS-C, Quick Inventory of Depression Symptomatology-Clinician
Related; RCT, randomized controlled trial.

► Mehrotra R, Cukor D, Unruh M, et al. Comparative efficacy of then, he has been seen every 2 to 3 months by his
therapies for depression in patients undergoing maintenance nephrologist. Currently he feels well, though he notes dry
hemodialysis: a randomized controlled trial. Ann Intern Med. mouth and progressive blandness in the taste of food. He
2019;170(6):369-379. + ESSENTIAL READING reports that he dislikes “all these pills” and sometimes feels
► Pena-Polanco JE, Mor MK, Tohme FA, et al. Acceptance of an- nauseated after taking them. His blood pressure is 158/78
tidepressant treatment by patients on hemodialysis and mm Hg and he has ankle edema (1+) that is not bothersome
their renal providers. Clin J Am Soc Nephrol. 2017;12(2):298- to him. He denies shortness of breath. Serum potassium
303. level is 5.3 mmol/L, bicarbonate level is 17 mmol/L, ionized
► Shirazian S, Grant CD, Aina O, et al. Depression in chronic kidney calcium level is 1.0 mmol/L, phosphorus level is 6.1 mg/dL,
disease and end-stage renal disease: similarities and differences
intact parathyroid hormone level is 400 pg/dL, and hemo-
in diagnosis, epidemiology, and management. Kidney Int Rep.
globin level is 9.7 g/dL. His medications include amlodipine,
2017;2(1):94-107. + ESSENTIAL READING
carvedilol, furosemide, aspirin, atorvastatin, calcitriol, seve-
► Unruh ML, Larive M, Chertow GM, et al. Effects of 6-times-
weekly versus 3-times-weekly hemodialysis on depressive
lamer, sodium bicarbonate, and darbepoetin every 2 weeks
symptoms and self-reported mental health: Frequent Hemodi- administered at home.
alysis Network (FHN) Trials. Am J Kidney Dis. 2013;61(5):748-
758. Question 4: What is most appropriate at this time?
a) Revisit whether he wants to start dialysis
b) Set up regular home intravenous sodium bicarbonate
Active Medical Management of Advanced CKD in infusions
the Outpatient c) Intensify diuretics to address edema and hypertension
d) Intensify phosphorus control by increasing binders and
Case 4: An 82-year-old man presents for follow-up of dietary restrictions
advanced CKD. His comorbid conditions include hyperten- e) Review medications and deprescribe if possible
sion, coronary artery disease, heart failure with preserved
ejection fraction, and peripheral arterial disease. His esti- For the answer to the question, see the following text.
mated GFR has declined by 2 to 3 mL/min/1.73 m2 per year
for the last 4 years and is currently 8 mL/min/1.73 m2. Last Comprehensive conservative care is an approach to
year, after discussion with his nephrologist and family, he treating advanced kidney disease with tools other than
opted for active medical management over dialysis. Since dialysis. This includes traditional CKD therapies that are

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known to delay GFR decline, as well as additional palliative survival among elderly patients is actually extended by
tools and services aimed specifically at reducing symptom dialysis, much of the “added time” is spent at dialysis,
burden. Although comprehensive conservative care pro- recovering from dialysis, or hospitalized with
grams vary in resources and infrastructure, the funda- complications.
mental goals are maximizing quality of life and aligning all Observational analyses are limited by bias and hetero-
care with the patient’s priorities. geneity, and it would be catastrophic to use any simple age
As a result of historical, political, and financial factors in cutoff, survey response, or comorbidity score to determine
the United States, comprehensive conservative care is which patients would be better suited by comprehensive
relatively rare. Dialysis is widely understood as the default conservative care than dialysis. It is essential to engage in
standard of care for kidney failure that cannot be treated by shared decision making with patients and their closest
transplantation. Implicit in this are 2 assumptions common supports. In large patient surveys, the majority of re-
among laypeople and clinicians from fields other than spondents rank “living longer” as less important than other
nephrology: that everyone can benefit from dialysis and aspects of life, including independence, dialysis-free time,
that the alternative to dialysis is imminent death. and ability to travel. For more information on prognostic
Observational data from the last 20 years challenge assessments and communication skills that facilitate
these assumptions. Survival with active medical man- dialysis-related decision making, see case 5 and the review
agement tends to be on the order of months to a few by Koncicki and Schell listed in the Additional Readings.
years for elderly patients, similar to dialysis (Fig 3). In In comprehensive conservative care, how care is deliv-
some populations, particularly those with ischemic ered will evolve based on changes in patient priorities and
heart disease and those older than 80 years at dialysis needs. Clinic visits and laboratory tests may occur every 2
initiation, the survival advantage with dialysis has been to 3 months, as they would in usual CKD care. However, as
shown to be modest or absent. Furthermore, when illness progresses, the focus of care may shift entirely to

45

40

35

30
months

25

20

15

10

Figure 3. Survival in comprehensive conservative care. Adapted from Wong et al, 2018 (Am J Kidney Dis. [Link]
ajkd.2017.11.007); original figure published as a US government work.

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symptom management. At that point, while laboratory Table 5. Symptoms Related to Eating
data may help guide certain interventions, such as in Symptom Intervention
symptomatic anemia, blood tests may be used sparingly • Liberalize dietary options, no
Anorexia
and clinic visits or home-based assessments may increase restrictions
in frequency. • Consider eating environment (increase
Although it is always possible for patients to change social nature, reduce cooking smells)
• Offer low-bulk high-calorie supplements
their minds regarding comprehensive conservative care, it • Trial appetite stimulants including
is not advisable to reassess this at every visit. In a study dronabinol
from an Australian practice, <2% of patients who selected Dry mouth • Rinse mouth regularly
conservative care changed their minds and initiated dial- • Trial artificial saliva
ysis. Recently, in a qualitative study of care practices for • Apply lip balm regularly
• Stimulate saliva production with lemon
patients with advanced kidney disease, doctors were noted juice, hard candies, gum, frozen grapes
to repeatedly assess capacity and urge reconsideration in Dysgeusia • Maintain oral hygiene
patients who had opted to forgo dialysis. This was asso- • Rinse with sodium bicarbonate
ciated with nephrologists’ perception that they were mouthwash
• Encourage herbs, spices, and tart fla-
“giving up” or had little to offer patients who were not vors to reduce bitter taste
going to start dialysis. • Avoid metal cutlery
This patient’s main concerns include mouth symptoms • Trial cold or tepid foods rather than hot
and pill burden. His acidosis, edema, and suboptimally Nausea, dry-retching, • Trial small regular meals, avoid skipping
controlled blood pressure are not causing symptoms and and vomiting meals
• Avoid strong smells
are unlikely to cause acute harm. Although it may be • Trial ginger or ginger products
instinctive to titrate diuretics and oral bicarbonate sup- • Address constipation
plements to achieve tighter control, those measures • Trial antiemetic medications
would constitute disease-specific rather than person-
centered care in this case. In the absence of dyspnea
from metabolic acidosis or hypervolemia, intensification This approach is recommended by global leaders in kid-
of therapy for the “bad numbers” is not necessary. ney supportive care after summary of available evidence
Similarly, focusing on phosphorus level reduction by and expert opinion from nephrologists, geriatricians, and
increasing binders or dietary restrictions during this visit palliative care specialists. The correct answer to question 4
would be misguided. is (e).
In the context of comprehensive conservative care,
quality of life and symptom reduction should be the main Additional Readings
focus of nutritional advice. Although there is a dearth of ► Davison SN, Tupala B, Wasylynuk BA, et al. Recommendations
literature about nutritional best practices in comprehensive for the care of patients receiving conservative kidney man-
conservative care, dietary recommendations should be agement: focus on management of chronic kidney disease and
modified according to the particular cultural, religious, symptoms. Clin J Am Soc Nephrol. 2019;14(4):626-634. +
and social needs of the patient. Many patients have had ESSENTIAL READING
years of counseling about phosphorus and potassium re- ► Koncicki HM, Schell JO. Communication skills and decision-
making for elderly patients with advanced kidney disease: a
striction; new advice may be necessary to mitigate food-
guide for nephrologists. Am J Kidney Dis. 2016;67(4):688-695.
related anxiety that may be experienced by the patient or + ESSENTIAL READING
family. It may be helpful to share the rationale for various ► Murtagh FEM, Burns A, Moranne O, et al. Supportive care:
dietary liberalizations. For example, it can be educational comprehensive conservative care in end-stage kidney disease.
to distinguish biochemical derangements that can be Clin J Am Soc Nephrol. 2016;11(10):1909-1914. + ESSEN-
acutely unsafe, such as hyperkalemia, from others that are TIAL READING
associated with complications in the long run, such as ► O’Connor NR, Kumar P. Conservative management of end-stage
renal disease without dialysis: a systematic review. J Palliat Med.
hyperphosphatemia. The social aspects of eating must also
2012;15(2):228-235.
be discussed. This patient’s nausea with taking pills, in ► Stevenson H, Meade A, Randall AM, et al. Nutrition in renal
combination with his dysgeusia, may result in withdrawal supportive care: patient-driven and flexible. Nephrology.
from meals and other social activities. Symptoms that 2017;22(10):739-747.
impact on oral intake are common in advanced CKD ► Tamura MK. Recognition for conservative care in kidney failure.
(Table 5). Am J Kidney Dis. 2016;68(5):671-673.
The most appropriate action to take at this juncture ► Wong SPY, McFarland LV, Liu CF, et al. Care practices for pa-
tients with advanced kidney disease who forgo maintenance
would be to review his medications and consolidate the
dialysis. JAMA Intern Med. 2019;179(3):305-313.
list if possible. Although cessation of any of these medi- ► Wong SPY, Yu MK, Green PK, et al. End-of-life care for pa-
cation treatments could lead to worsening in biochemical tients with advanced kidney disease in the US Veterans Affairs
parameters, it may be worthwhile to the patient, who is health care system, 2000-2011. Am J Kidney Dis.
experiencing daily nausea and stress from taking them. 2018;72(1):42-49. + ESSENTIAL READING

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AKI in Patients With Other Serious Illness Box 2. Approach to Shared Decision Making for Inpatients With
AKI and Serious Illness
Case 5: A 71-year-old woman with history of chol- Understand the clinical picture
angiocarcinoma and CKD stage 3 develops sepsis and AKI. • Review the medical record and confer with other members of
One year ago, she underwent surgical resection of the care team to understand the expected trajectory and treat-
cancer, including cholecystectomy, partial hepatectomy, and ment options for the underlying illness (cancer, cirrhosis, etc)
hepatico-jejunostomy. She was believed to be cured. She • Are there disease-specific treatments available for patient’s
now presents with fever and shortness of breath. She is other comorbid conditions?
found to have polymicrobial bacteremia, an ill-defined liver > If so, is patient a reasonable candidate for these treat-
mass, and AKI. On admission, creatinine level is 3.3 mg/dL ments at this time?
from a baseline of 1.5 mg/dL and increases to 6.1 mg/dL by > If not, what is the likelihood of patient being a candidate in
hospital day 4, when it plateaus. Urine microscopy shows the future?
granular casts. Her bacteremia clears with intravenous anti-
biotic treatment and she is transitioned to oral antibiotic Assess the renal prognosis
treatment. Her liver mass is biopsied and cancer recurrence • Limited kidney injury (ATN) vs ongoing kidney injury (eg, tu-
is confirmed. Serum creatinine level remains at 5.9 mg/dL. mor lysis, toxicity of needed medication, decreased effective
Serum potassium level is 5.4 mEq/L, pH is 7.31, PCO2 is 30 arterial blood volume); identify likely short- and long-term ef-
mm Hg, and bicarbonate level 15 mmol/L. She is edematous fects of KRT vs active medical management in these domains
(net + 11 L since admission) and making about 800 mL of • Symptoms
urine daily with diuretics. • Functional Status
• Quality of life
Question 5: Which of the following is true about this • Prognosis (expected illness trajectory in terms of time and
situation? function)
a) Dialysis will prolong her survival Arrange meeting with patient, family, and other key
b) Choosing not to start dialysis means imminent death members of care team
c) Dialysis should be started now because not starting dial- • Consider assistance through specialty palliative care
ysis will prolong her hospital stay and delay follow-up with consultation
outpatient oncology • Pre-meet with other care providers to share perspectives
d) Shared decision making means contextualizing her prior- • Review published approaches to family meetings, including
ities and preferences in the setting of her prognosis and SPIKES (see Bailet et al) and REMAP (see Childers et al)
therapeutic options • Start by asking about patient and family’s perception of
e) Available prognosis estimator tools have been validated current illness and knowledge of dialysis
for inpatients with AKI • Ask about patient’s identity before illness
For the answer to the question, see the following text. • Define what patient considers important for quality of life in
the context of current illness
• Ask permission to share information and provide a medical
update
In hospitalized patients, AKI is often a reflection of • Acknowledge prognostic uncertainty
overall severity of illness rather than intrinsic kidney dis- • Address emotion
ease. Several domains of kidney supportive care are helpful
in developing an appropriate care plan. Empathic patient- Align patient goals and values with treatment plan
• Offer a treatment recommendation based on patient prior-
centered communication around prognosis (the expected
ities, goals, and values
trajectory of illness), exploration of the option of active > Time-limited trial of dialysis
medical management without dialysis, and psychosocial > Active medical management
and spiritual assessments are key (Box 2). The communi- • Outline “next steps” and expected trajectory for either
cation tasks can be subdivided into shared decision making pathway
about current care choices and advance care planning • Invite input from other teams on other relevant care decisions
about anticipated future care choices (advance directives). Abbreviations: AKI, acute kidney injury; ATN, acute tubular necrosis; KRT, kidney
Shared decision making is a patient-centered approach replacement therapy.
Based on information in Bailet et al, 2000 (Oncologist. [Link]
to navigating care options. It starts with exploring health theoncologist.5-4-302) and Childers et al, 2017 (J Oncol Pract. [Link]
literacy and prognostic awareness through the question 10.1200/JOP.2016.018796).

“What do you understand about your current illness?”

Additional discussion ensues, including open-ended cardiac, liver, or oncologic disease, inclusion of the other
prompts about worries, hopes, and priorities in the specialty teams in the shared decision-making process is
context of illness. After developing an understanding of a essential, if also challenging in the pressurized and frag-
patient’s priorities, the medical team then makes an mented inpatient setting.
informed recommendation about which treatment plan A major challenge of shared decision making is prog-
best aligns with the patient’s preferences and goals. In nostic uncertainty. Uncertainties about the renal prognosis
cases in which AKI occurs in the setting of advanced are often compounded by uncertainties about the

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underlying illness trajectory. Regardless, being ill enough of the nephrology consulting service, dialysis may
to require inpatient initiation of dialysis in any clinical already have been discussed with the patient or his or her
context is a poor prognostic sign. According to data from family. Sometimes options are presented in a dichoto-
the Health and Retirement Study, of 286 patients who mous or oversimplified binary (indefinite dialysis or
initiated dialysis as an inpatient, 26% died within 30 days, imminent death). This can prime the patient and family
51% died by 6 months, and 62% died by 1 year. These to expect dialysis and may reduce their willingness to
mortality rates are higher than those derived from the US engage in nuances of shared decision making. For a
Renal Data System database, which includes only patients thorough discussion of time-limited trials of dialysis, see
who survive long enough to establish care in an outpatient the review by Scherer and Holley listed in the Additional
dialysis unit. Readings.
Prognostic assessment tools, including the REIN (Renal Surveys have repeatedly shown that graduating
Epidemiology and Information Network) score, the nephrology fellows feel ill-equipped to navigate difficult
Thamer mortality risk score, and the surprise question conversations related to end-of-life care. Part of the
(“Would I be surprised if this patient died in the next imperative of kidney supportive care is to develop
year?”) are all validated in patients receiving or tran- curricular and experiential opportunities to observe and
sitioning to maintenance dialysis; they are not validated for practice these skills. In countries with robust kidney sup-
use at the bedside of a hospitalized patient with AKI. portive care programs, nephrology fellows rotate in
The main care options for AKI in the context of another palliative care clinics and inpatient consult services. These
serious illness include a time-limited trial of dialysis or types of training experiences equip nephrologists with
nondialytic active medical management of uremia and communication tools necessary for navigating these com-
hypervolemia. During a time-limited trial of dialysis, the mon complex situations.
nephrology team, other medical teams, and the patient The correct answer to question 5 is (d).
team (including any surrogate decision makers) enumerate
potential risks, potential benefits, and intended goals of Additional Readings
dialysis. Goals may include “bridging” to expected renal ► Bernacki RE, Block SD. Communication about serious illness
recovery or an important life event, symptomatic relief, or care goals: a review and synthesis of best practices. JAMA Intern
functional improvements in strength or mobility. Purely Med. 2014;174(12):1994-2003. + ESSENTIAL READING
“prolonging life” is rarely but sometimes a patient goal, ► Couchoud C, Hemmelgam B, Kotanko P, et al. Supportive care:
and intensive psychosocial and spiritual support can often time to change our prognostic tools and their use in CKD. Clin J
enhance understanding of this challenging position when Am Soc Nephrol. 2016;11(10):1892-1901.
encountered. From the outset, it is essential that all teams ► Renal Physicians Association. Shared Decision-Making in the
Appropriate Initiation of and Withdrawal From Dialysis. 2nd ed.
agree that lack of progress toward the agreed-on goals will Rockville, MD: Renal Physicians Association; 2010.
be grounds for stopping dialysis. A parallel in oncology is ► Scherer JS, Holley JL. The role of time-limited trials in dialysis
the stopping of a palliative chemotherapy that has not decision making in critically ill patients. Clin J Am Soc Nephrol.
provided intended symptom relief to a patient with cancer. 2016;11(2):344-353. + ESSENTIAL READING
If a time-limited trial is agreed on, dialysis is provided ► Scherer JS, Swidler MA. Decision-making in patients with cancer
for a prespecified time, and the patient’s progress toward and kidney disease. Adv Chronic Kidney Dis. 2014; 21(1):72-80.
those predefined goals is monitored. Complications of ► Soohoo M, Streja E, Obi Y, et al. Predialysis kidney function and
its rate of decline predict mortality and hospitalizations after
treatment are also acknowledged with the patient, starting dialysis. Mayo Clin Proc. 2018;93(8):1074-1085.
including vascular access problems and hemodynamic ► Wachterman MW, Marcantonio ER, Davis RB, et al. Relationship
instability, both of which are common in the setting of a between the prognostic expectations of seriously ill patients un-
concurrent serious illness. At the end of the prespecified dergoing hemodialysis and their nephrologists. JAMA Intern Med.
period, the teams meet to discuss each party’s perception 2013;173(13):1206-1214. + ESSENTIAL READING
of how things are going. When discussing dialysis ► Wachterman MW, O’Hare AM, Rahman OK, et al. One-year
discontinuation, collaboration with a palliative care team mortality after dialysis initiation among older adults (research let-
ter). JAMA Intern Med. 2019;179(7):987-990.
may facilitate a detailed conversation of hospice, including
symptom-focused care and disposition options, including
home hospice and inpatient facilities. Withdrawal From Dialysis
There are many barriers to time-limited dialysis trials
Case 6: A 73-year-old man receiving maintenance hemo-
and shared decision making in inpatient settings,
dialysis is hospitalized 5 times during the last 6 months with
including interprofessional team dynamics, misinfor-
volume overload. He has aortic stenosis, congestive heart
mation, and inadequate training and skill in communi- failure (ejection fraction, 10%), transient ischemic attacks,
cating. Care fragmentation is common, which means the and a below-knee amputation. He now experiences frequent
team that managed dialysis initiation may no longer be symptomatic intradialytic hypotension and cramping. His
present when it comes time to evaluate progress toward nephrologist has tried to improve his tolerance of ultrafiltra-
the prespecified goals. Additionally, before involvement tion by eliminating all antihypertensives, adding midodrine,

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and changing the dialysis prescription, including increased

hospital, lower functional status, and presence of periph-
time, ultrafiltration modeling, and low-temperature dialysate. eral edema are all independent predictors of early mortality
The patient reports distress over the frequent hospitalizations after dialysis discontinuation.
and anxiety that he will be hospitalized during his grand- When considering withdrawal from dialysis, several fac-
daughter’s wedding next month. He says he might want to tors need to be examined: reasons for withdrawal, sources
“call it quits” after that event. and reversibility of distress, decisional capacity of the patient,
and support from family. If hypervolemia and postdialysis
Question 6: Which of the following is false? fatigue are significant sources of distress, alternative dialysis
a) He can receive kidney supportive care while continuing modalities including nocturnal dialysis and peritoneal dial-
hemodialysis ysis should be considered. Assisted peritoneal dialysis, in
b) Elective withdrawal from dialysis is common which visiting nurses manage the technical aspects of ther-
c) Completion of an advance directive is one of the ESRD
apy, is a growing option in Canada and Europe though not
QIP quality metrics through which dialysis units are
graded and will be financially penalized for poor
yet available in the United States. For patients in whom
performance volume is not a significant issue, reduction of in-center
d) An alternative dialysis modality might be a palliative option dialysis dose, akin to incremental dialysis for incident pa-
tients with substantial residual kidney function, should be
For the answer to the question, see the following text. considered (“decremental dialysis”).
It is important to note that in the United States the
current ESRD QIP metrics, particularly those related to
Withdrawal from dialysis is the third most common Kt/V and phosphate goals, may create a barrier for this
cause of death of patients with kidney failure after car- kind of dialysis customization. The ESRD QIP also does
diovascular disease and infection. Between 2008 and not include any metric related to advance care planning,
2010, more than 50,000 patients in the United States which is an essential part of caring for seriously ill pa-
discontinued dialysis before death. Although a patient’s tients receiving dialysis because it encompasses prefer-
right to withdraw has been established in practice guide- ences related to resuscitation attempts (code status) and
lines from the Renal Physicians Association and the health care proxy assignments. The correct answer to
American Society of Nephrology, it is often challenging question 6 is (c).
and emotionally taxing for patients, families, and providers It is important to emphasize that medical care will
to discuss. In one study, <10% of patients receiving dial- continue after stopping dialysis, with a focus on symptom
ysis reported discussing end of life with their nephrologists management during the dying process. Expectations
in the last year, while 85% to 90% reported it is important should be set for a painless progressive decrease in con-
to them to receive information about prognosis and all sciousness and the possibility of treatable dyspnea, nausea,
treatment options, including dialysis withdrawal. and pruritus. Local hospice resources can be engaged to
Early recognition of those who are more likely to with- oversee terminal symptom management in the patient’s
draw may improve end-of-life care. Acute medical decom- preferred place of death, if feasible. In a survey of patients
pensation and chronic failure to thrive are the 2 most with kidney disease, most would rather die at home (36%)
common precedents for dialysis discontinuation. In a or in an inpatient hospice (29%) than a hospital (27%).
retrospective cohort study of more than 17,000 octogenar- Withdrawal from dialysis and end-of-life care should be
ians receiving dialysis in the United States in 2019, other thought of as a small but important piece of the broad
factors associated with withdrawal included older age, dia- spectrum of kidney supportive care. A successful with-
betes, dementia, white race, Medicare as primary insurance, drawal is a dignified death, on a patient’s own terms, with
and initial access through a central venous catheter. There are the least possible amount of suffering and maximal sup-
also marked regional differences in dialysis discontinuation port for those left behind.
rates; these variations are not explained by differences in
patient characteristics but correlate with overall regional
Additional Readings
Medicare spending trends. In one study, withdrawal from
► Chen JC, Thorsteinsdottir B, Vaughan LE, et al. End of life, with-
dialysis was more common in Midwestern and Southwestern
drawal, and palliative care utilization among patients receiving
states and least common in New York. maintenance hemodialysis therapy. Clin J Am Soc Nephrol.
Access to hospice remains extremely limited for patients 2018;13(8):1172-1179. + ESSENTIAL READING
receiving maintenance dialysis under current Medicare ► Davison S. End of life care preferences and needs: perceptions of
policy. The details of these barriers are discussed elsewhere patients with chronic kidney disease. Clin J Am Soc Nephrol.
(see the Grubbs editorial in the Additional Readings). 2010;5(2):195-204. + ESSENTIAL READING
Among patients who stop dialysis, approximately half ► Grubbs V. ESRD and hospice care in the United States: are
dialysis patients welcome? Am J Kidney Dis. 2018;72(3):429-
enroll in hospice. Individual survival time varies greatly, 432. + ESSENTIAL READING
with a mean of 7.4 (range, 0-40) days. This is notably ► Grubbs V, Moss AH, Cohen LM, et al. A palliative approach to
lower than the mean survival of patients with nonrenal dialysis care: a patient-centered transition to the end of life. Clin J
hospice diagnoses (54 days). Male sex, referral from a Am Soc Nephrol. 2014;9(12):2203-2209. + ESSENTIAL READING

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 Core Curriculum

► Ko GJ, Obi Y, Chang TI, et al. Factors associated with withdrawal dialysis and transplantation practices evolve and as new
from dialysis therapy in incident hemodialysis patients aged 80 therapeutic tools emerge, kidney supportive care will
years or older. J Am Med Dir Assoc. 2019;20(6):743-750. remain a way to prioritize, validate, and bear witness
► O’Connor NR, Dougherty M, Harris PS. Casarett DJ. Survival after
to the human experience of illness.
dialysis discontinuation and hospice enrollment for ESRD. Clin J
Am Soc Nephrol. 2013;8(12):2117-2122.
► O’Hare AM, Rodriguez RA, Hailpern SM, et al. Regional variation Article Information
in health care intensity and treatment practices for end-stage
renal disease in older adults. JAMA. 2010;304(2):180-186. Authors’ Full Names and Academic Degrees: Samantha L.
► Weiner D, Watnick S. The ESRD quality incentive program—can Gelfand, MD, Jennifer S. Scherer, MD, and Holly M. Koncicki, MD,
we bridge the chasm? J Am Soc Nephrol. 2017;28(6):1697-1706. MS.
► Wong SPY, Kreuter W, O’Hare AM. Treatment intensity at the end Authors’ Affiliations: Division of Palliative Care and Geriatric
of life in older adults receiving long-term dialysis. Arch Intern Med. Medicine, Massachusetts General Hospital (SLG); Department of
2012;172(8):661-662. Psychosocial Oncology and Palliative Care, Dana-Farber Cancer
Institute (SLG); Harvard Medical School, Boston, MA (SLG);
Divisions of Palliative Care (JSS) and Nephrology (JSS), New York
University School of Medicine; and Division of Nephrology, Mount
Conclusion Sinai School of Medicine, New York, NY (HMK).
Palliation, which means reduction of suffering, has Address for Correspondence: Samantha L. Gelfand, MD, 55 Fruit
always been a cornerstone of the nephrologist’s St, Founders 600, Boston, MA 02114. E-mail: slgelfand@mgh.
mission. Kidney supportive care encompasses a broad [Link]
range of skills and services because patients with kid- Support: Dr Scherer acknowledges support from the Cambia
ney disease have a broad range of needs, from symp- Health Foundation and National Kidney Foundation. The funders
tom relief to psychosocial support to intensive did not have any role in defining the content of this article.
communication about complex care choices. Nephrol- Financial Disclosure: The authors declare that they have no other
relevant financial interests.
ogists must hone their primary palliative skills to craft
high-value patient-centered plans of care. When avail- Peer Review: Received June 27, 2019, in response to an invitation
from the journal. Evaluated by 2 external peer reviewers and a
able, collaboration with specialty palliative care teams member of the Feature Advisory Board, with direct editorial input
can provide an additional layer of support for patients, from the Feature Editor and a Deputy Editor. Accepted in revised
families, and the nephrology team themselves. As form October 10, 2019.

14 AJKD Vol XX | Iss XX | Month 2020