Should there be an expanded role for palliative care in end-stage renal disease?
Open accessAbstract
PURPOSE OF REVIEW: In this review, we outline the rationale for expanding the role of palliative care in end-stage renal disease (ESRD), describe the components of a palliative care model, and identify potential barriers in implementation. RECENT FINDINGS: Patients receiving chronic dialysis have reduced life expectancy and high rates of chronic pain, depression, cognitive impairment, and physical disability. Delivery of prognostic information and advance care planning are desired by patients, but occur infrequently. Furthermore, although hospice care is associated with improved symptom control and lower healthcare costs at the end of life, it is underutilized by the ESRD population, even among patients who withdraw from dialysis. A palliative care model incorporating communication of prognosis, advance care planning, symptom assessment and management, and timely hospice referral may improve quality of life and quality of dying. Resources and clinical practice guidelines are available to assist practitioners with incorporating palliative care into ESRD management. SUMMARY: There is a large unmet need to alleviate the physical, psychosocial, and existential suffering of patients with ESRD. More fully integrating palliative care into ESRD management by improving end-of-life care training, eliminating structural and financial barriers to hospice use, and identifying optimal methods to deliver palliative care are necessary if we are to successfully address the needs of an aging ESRD population.
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Claims the paper makes
0 of 54 cited sources checked · 0 supported · 0 flagged
- Premisecitation
Even though survival after starting dialysis is known to be poor, advance care planning is uncommon.
“Despite knowledge of poor survival after dialysis initiation, advance care planning occurs infrequently [9,10].”
Quote in the paperSubstantial claim0 of 2 sources checked - Premisecitation
As many as one third of older ESRD patients have at least four other chronic conditions when they reach ESRD.
“Up to one third of elderly patients with ESRD have four or more chronic health conditions when they reach ESRD [5]”
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- Premisecitation
A recent UK study found that for patients over 70 starting dialysis, much of the survival advantage over nondialytic care came from extra days spent in hospital or the dialysis unit.
“A recent study from the United Kingdom noted that among patients over the age of 70 starting dialysis, much of the survival benefit associated with dialysis initiation versus nondialytic therapy was explained by additional days in the hospital or in the dialysis unit [8•].”
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Only 19% of dialysis patients younger than 55 are employed.
“recent data indicate that only 19% of the patients under the age of 55 are employed [6].”
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- Premisecitation
Studies show that the worry about destroying hope by discussing prognosis is usually unfounded.
“although studies indicate that this concern is generally unfounded [27].”
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- Premisecitation
Several studies show that older dialysis patients have lower physical quality of life than younger ESRD patients or healthy older adults.
“In several studies, although physical aspects of quality of life are reduced compared with younger ESRD patients or healthy elderly, mental aspects of quality of life are preserved [22,23].”
Quote in the paperSubstantial claim0 of 2 sources checked - Premisecitation
For many people with ESRD, survival is comparable to or shorter than survival in common cancers.
“Life expectancy for many patients with ESRD is similar or worse than that associated with common cancers, and dialysis initiation may not substantially prolong life for some patients.”
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- cites [8•]
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- Premisecitation
Physical disability is common and often severe among ESRD patients.
“Physical disability is also common and frequently severe.”
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- Premisecitation
Several studies show that older dialysis patients retain their mental quality of life.
“In several studies, although physical aspects of quality of life are reduced compared with younger ESRD patients or healthy elderly, mental aspects of quality of life are preserved [22,23].”
Quote in the paperSubstantial claim0 of 2 sources checked - Premisecitation
Nearly one quarter of ESRD patients stop dialysis before they die.
“almost 25% of patients with ESRD choose to discontinue dialysis before death [4].”
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- Premisecitation
As many as one third of dialysis patients have severe cognitive impairment.
“One in five patients have depressive symptoms and up to one-third have severe cognitive impairment [17,18].”
Quote in the paperSubstantial claim0 of 2 sources checked - Premisecitation
One in five dialysis patients has depressive symptoms.
“One in five patients have depressive symptoms and up to one-third have severe cognitive impairment [17,18].”
Quote in the paperSubstantial claim0 of 2 sources checked - Interpretationcitation
Quality-of-life studies in older chronic dialysis patients suggest that dialysis is not always unsatisfactory for older people.
“studies of quality of life in elderly patients receiving chronic dialysis offer reason to believe that dialysis therapy is not uniformly unsatisfactory in the elderly.”
Quote in the paperSubstantial claim0 of 2 sources checked - Premisecitation
Just over half of the Canadian ESRD patients who regretted starting dialysis said they did so because their doctor urged them.
“In a recent survey of Canadian ESRD patients, 60% said they regretted beginning dialysis; just over half of these patients indicated that they began the treatment because of the urging of their physician [21•].”
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- Interpretationcitation
For younger patients too, dialysis has not delivered the expected rehabilitation.
“Even for younger patients, the promise of rehabilitation after dialysis initiation has not been achieved.”
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- Premisecitation
Before death, ESRD patients use hospice at less than half the rate of cancer patients, even when they stop dialysis first.
“Rates of hospice use before death among patients with ESRD are less than half of those seen among patients dying of cancer, even among patients with ESRD who choose to withdraw from dialysis before death [11].”
Quote in the paperSubstantial claim0 of 1 sources checked- cites [11] source
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- Interpretationreasoning
There is a major unmet need to reduce the physical, psychological, social, and existential suffering of ESRD patients.
“There is a large unmet need to alleviate the physical, psychosocial, and existential suffering of patients with ESRD.”
Quote in the paperSubstantial claim - Premisecitation
In two studies, older ESRD patients managed without dialysis had median survival similar to older patients who started dialysis with ischemic heart disease or after emergency referral.
“in two studies, median survival was similar among elderly patients receiving nondialytic management of ESRD as compared with elderly patients who started dialysis with coexisting ischemic heart disease [7], or elderly patients who started dialysis after emergency referral [8•].”
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Similar findings have been seen in older patients living in the community.
“Similar findings have been noted in community-dwelling elderly patients [20].”
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Cohen and colleagues developed and validated a simple tool for predicting 6-month mortality in hemodialysis patients, using age, serum albumin, peripheral vascular disease, dementia, and the surprise question.
“Recently, Cohen and colleagues [28•,29] developed and validated a simple prognostic instrument for predicting 6-month mortality among ESRD patients receiving hemodialysis that incorporates five elements: age, serum albumin, peripheral vascular disease, dementia, and the ‘surprise question’ (would I be surprised if this patient died in the next year?).”
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- Premisecitation
In a recent Canadian survey, 60% of ESRD patients said they regretted starting dialysis.
“In a recent survey of Canadian ESRD patients, 60% said they regretted beginning dialysis; just over half of these patients indicated that they began the treatment because of the urging of their physician [21•].”
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- Interpretationreasoning
Most older ESRD patients face lifelong dialysis with no chance of cure.
“Thus, the vast majority of elderly patients with ESRD face the prospect of lifelong dialysis therapy without the option for cure.”
Quote in the paperSubstantial claim- Rests on an assumption: Most elderly ESRD patients cannot receive a kidney transplant because of other illnesses, a shortage of living donors, and long waiting lists.
- Interpretationcitation
Starting dialysis may not meaningfully extend life for some patients.
“dialysis initiation may not substantially prolong life for some patients.”
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- cites [8•]
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- Premisecitation
Hospice is used too little by ESRD patients, including those who stop dialysis.
“it is underutilized by the ESRD population, even among patients who withdraw from dialysis.”
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- Interpretationreasoning
A palliative care approach that includes prognosis communication, advance care planning, symptom management, and timely hospice referral may improve quality of life and quality of dying.
“A palliative care model incorporating communication of prognosis, advance care planning, symptom assessment and management, and timely hospice referral may improve quality of life and quality of dying.”
Quote in the paperSubstantial claim - Interpretationcitation
Because these tools predict short-term mortality, they are better than usual comorbidity indices for identifying ESRD patients who might benefit from palliative and hospice care.
“Because these tools focus on prediction of short-term mortality, they offer an advantage over other commonly used comorbidity indices typically used for risk adjustment (e.g. Charlson index) in terms of identifying ESRD patients who may benefit from palliative and hospice care [31].”
Quote in the paperSubstantial claim0 of 1 sources checked- cites [31]
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- Premisecitation
In other life-limiting illnesses, patients who had end-of-life discussions with a clinician had lower healthcare costs.
“In studies of patients with other life-limiting illnesses, patients who had end-of-life discussions with a healthcare provider accrued fewer healthcare costs, used less invasive or burdensome procedures, and entered hospice care earlier and more frequently [12,13•,32].”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites [12,13•,32]
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- Interpretationreasoning
Talking about prognosis can often help patients plan advance care.
“A discussion of prognostic information can often facilitate advance care planning.”
Quote in the paperSubstantial claim - Premisecitation
In a survey of US and Canadian nephrologists, those who felt better prepared for end-of-life decisions were more likely to stop dialysis in hypothetical cases and to have stopped dialysis in the past year.
“In one survey of United States and Canadian nephrologists, those who reported being better prepared to make end-of-life decisions were more likely to stop dialysis in several hypothetical scenarios and more likely to have stopped dialysis in the preceding year [38].”
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In other life-limiting illnesses, patients who had end-of-life discussions with a clinician received fewer invasive or burdensome procedures.
“In studies of patients with other life-limiting illnesses, patients who had end-of-life discussions with a healthcare provider accrued fewer healthcare costs, used less invasive or burdensome procedures, and entered hospice care earlier and more frequently [12,13•,32].”
Quote in the paperSubstantial claim0 of 1 sources checked- cites [12,13•,32]
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- Premisecitation
In other life-limiting illnesses, patients who had end-of-life discussions with a clinician entered hospice earlier and more often.
“In studies of patients with other life-limiting illnesses, patients who had end-of-life discussions with a healthcare provider accrued fewer healthcare costs, used less invasive or burdensome procedures, and entered hospice care earlier and more frequently [12,13•,32].”
Quote in the paperSubstantial claim0 of 1 sources checked- cites [12,13•,32]
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- Premisecitation
A recent survey found that nephrologists who knew the guidelines were more likely to feel prepared for end-of-life decisions.
“A recent survey indicated that nephrologists who were familiar with the guidelines were more likely to feel prepared for end-of-life decision making [38].”
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- Interpretationreasoning
Because of these barriers, ESRD patients who could benefit cannot get hospice services.
“As a result of these barriers, ESRD patients who might benefit cannot access hospice services.”
Quote in the paperSubstantial claim- Rests on an assumption: From the authors' experience, hospice programs often see continuing dialysis as financially problematic and incompatible with their organizational goals.
- Premisecitation
ESRD patients who discuss end-of-life care with a clinician are more likely to complete advance directives.
“ESRD patients who have end-of-life discussions with a healthcare provider are more likely to complete advance directives [9,10].”
Quote in the paperSubstantial claim0 of 2 sources checked - Interpretationnone given
Kidney practices outside academic medical centers, especially rural ones, may have limited access to palliative care specialists.
“Nephrology practices not affiliated with academic medical centers, particularly those in rural settings, may have limited access to palliative care specialists.”
Quote in the paperNot a substantial claim- Rests on an assumption: In the United States, palliative care is usually provided in acute care hospitals or hospice programs.
- Premisecitation
Couchoud and colleagues reported a clinical risk score for predicting 6-month mortality in older French patients starting dialysis.
“Couchoud et al. [30•] have also reported a clinical risk score for predicting 6-month mortality in elderly French patients starting dialysis.”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites [30•]
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- May combine two claims. 11
- Classified as probably not a substantial claim. 2
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PremisecitationPatients want prognostic information and advance care planning, but these happen rarely.
“Delivery of prognostic information and advance care planning are desired by patients, but occur infrequently.”
Quote in the paperSubstantial claim0 of 3 sources checkedMay combine two claims.
InterpretationcitationDialysis may lengthen life, but it often does not restore health, and many patients have distressing symptoms or disability before death.
“Although dialysis therapy may extend life, it is now increasingly clear that it often fails to restore health and that many patients suffer from distressing symptoms or disability prior to death.”
Quote in the paperSubstantial claimMay combine two claims.
PremisecitationIn other serious illnesses, hospice users and their families report better symptom control and greater satisfaction with dying.
“in other life-threatening illnesses, users of hospice care and their families report improved symptom control and a high level of satisfaction with the dying process [12].”
Quote in the paperSubstantial claim0 of 1 sources checked- cites [12] source
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PremisecitationAbout half of hemodialysis patients have pain, and medication often does not control it well.
“Half of all hemodialysis patients report pain symptoms, which are often inadequately controlled with medication [15,16].”
Quote in the paperSubstantial claim0 of 2 sources checkedMay combine two claims.
PremisecitationIn nursing home residents starting dialysis, dialysis initiation was linked to a large and lasting drop in functional status at the start, along with very high mortality.
“Among nursing home residents starting dialysis, we recently demonstrated that dialysis initiation was associated with a substantial and sustained decline in functional status at the start of dialysis in addition to very high mortality [19•].”
Quote in the paperSubstantial claim0 of 1 sources checked- cites [19•]
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PremisecitationIn the United States, people over 75 have higher ESRD incidence than younger people and are the fastest-growing ESRD group.
“Today, patients over the age of 75 have higher incidence rates of ESRD than younger patients and constitute the fastest growing segment of the ESRD population in the United States [4].”
Quote in the paperSubstantial claim0 of 1 sources checked- cites [4] source
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PremisecitationESRD patients and their families strongly want prognostic information but seldom get it.
“studies show that ESRD patients and their families strongly desire this information but rarely receive it [21•,26].”
Quote in the paperSubstantial claim0 of 1 sources checked- cites [21•,26]
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PremisecitationNephrologists vary substantially in their attitudes and practices around end-of-life decisions, though these differences appear to be shrinking.
“Studies show there is substantial variation in attitudes toward and practice of end-of-life decision making among nephrologists, although these differences seem to be lessening over time [36,37].”
Quote in the paperSubstantial claim0 of 2 sources checkedMay combine two claims.
InterpretationreasoningWhen symptoms and functional limits worsen, timely hospice referral improves control of pain and other symptoms and gives the patient and family time to prepare for death.
“As symptom burden and functional limitations increase, timely referral for hospice services allows for better control of pain and other symptoms, and provides the patient and family time to prepare for death.”
Quote in the paperSubstantial claimMay combine two claims.
PremisecitationESRD patients spend an average of only 14 days in hospice, compared with 59 days for patients with other diseases, which suggests late referral.
“ESRD patients spend an average of only 14 days in hospice, in contrast to the average of 59 days for patients with other diseases, suggesting that they are referred late in the dying process [35].”
Quote in the paperSubstantial claim0 of 1 sources checked- cites [35] source
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Probably not a substantial claim: may not pass S3 (load-bearing).
PremisecitationDavison and Torgunrud described a patient-centered advance care planning model for ESRD.
“A patient-centered advance care planning model for ESRD has been described by Davison and Torgunrud [33].”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites [33] source
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May combine two claims.
InterpretationreasoningIn addition to knowledge gaps, structural and financial obstacles block wider palliative and hospice care for ESRD patients.
“Beyond improving knowledge of palliative care, there are also structural and financial barriers to expanding palliative care in general and hospice care in particular to ESRD patients.”
Quote in the paperSubstantial claim- Rests on an assumption: In the United States, palliative care is usually provided in acute care hospitals or hospice programs.
- Rests on an assumption: From the authors' experience, hospice programs often see continuing dialysis as financially problematic and incompatible with their organizational goals.
Probably not a substantial claim: may not pass S3 (load-bearing).
PremisecitationIn the Davison and Torgunrud model, the aim is to make end-of-life care match patient preferences rather than to complete advance directives.
“In this model, the focus is on ensuring that end-of-life care is consistent with patient preferences, rather than on completing advance directives.”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites [33] source
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The paper relies on this without support.
Most elderly ESRD patients cannot receive a kidney transplant because of other illnesses, a shortage of living donors, and long waiting lists.
“most are not considered candidates for kidney transplantation owing to their coexisting conditions, lack of living donors, and long waitlist times.”
The paper relies on this without support.
Most ESRD patients die in hospital, often in intensive care after costly and invasive tests and treatments, while experiencing pain or other distressing symptoms.
“Most patients with ESRD die in the hospital, often in an intensive care setting after undergoing expensive and invasive medical tests and therapies, while suffering with pain or other distressing symptoms.”
The paper relies on this without support.
Doctors frequently hesitate to talk about prognosis.
“Although physicians are often hesitant to discuss prognosis, studies show that ESRD patients and their families strongly desire this information but rarely receive it [21•,26].”
The paper relies on this without support.
In the United States, palliative care is usually provided in acute care hospitals or hospice programs.
“Although palliative care can in theory be delivered in any healthcare setting, in the United States it is most often delivered in the acute care setting or in a hospice program.”
The paper relies on this without support.
From the authors' experience, hospice programs often see continuing dialysis as financially problematic and incompatible with their organizational goals.
“in our experience hospice programs frequently view continuation of dialysis as financially problematic and incompatible with organizational goals.”
The paper relies on this without support.
Kidney doctors are unsure how accurate prognostic information is.
“Nephrologists are also uncertain about the accuracy of prognostic information.”
The paper relies on this without support.
Differences in nephrologists' end-of-life decision making are caused by differences in their training.
“Underlying these variations are marked differences in training.”
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Renal Replacement Therapy in Geriatric End-Stage Renal Disease Patients: A Clinical Approach
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Palliative Care: Too Good to Be True?
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Research Priorities in Geriatric Palliative Care: Nonpain Symptoms
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Reengineering Dialysis: The Role of Palliative Medicine
Feely, M. A., Swetz, K. M., Zavaleta, K. W., Thorsteinsdottir, B., Albright, R. C., & Williams, A. W. (2016) · Journal of Palliative Medicine · doi:10.1089/jpm.2015.0181 · Cited by 19 · see citing works
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Bagasha, P., Leng, M. E. F., Katabira, E. T., & Petrova, M. (2020) · BMC Nephrology · doi:10.1186/s12882-020-02197-7 · Cited by 16 · see citing works
An Exploration of Palliative Care Needs of People With End-Stage Renal Disease on Dialysis
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Integrating Early Palliative Care for Patients With HIV
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Treating Pain to Improve Quality of Life in End‐Stage Renal Disease
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The Elderly Patient with End-Stage Renal Disease: Is Dialysis the Best and Only Option?
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Curriculum „Palliative nephrologische Betreuung“
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Depression in Older Adults Receiving Hospice Care
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Dialyse und ethische Probleme beim sehr alten Patienten
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(2011) · Current Opinion in Supportive and Palliative Care · doi:10.1097/spc.0b013e32834a76ed
Advance care planning for end-stage kidney disease
Effiong, A., Shinn, L., Pope, T. M., & Raho, J. A. (2013) · Cochrane Database of Systematic Reviews · doi:10.1002/14651858.cd010687
RetractedBowling, C. B., & DePasquale, N. (2022) · Cambridge University Press eBooks · doi:10.1017/9781108942751.026
Ledo, M. C. (2015) · LA Referencia (Red Federada de Repositorios Institucionales de Publicaciones Científicas)
- Authors
- Kurella Tamura, M., & Cohen, L. M.
- Affiliations
- Tufts University (US)
- ORCID
- Cohen, Lewis M
- Venue
- Current Opinion in Nephrology and Hypertension
- Published
- 2010-11
- Volume
- 19
- Issue
- 6
- Pages
- 556-560
- ISSN
- 1062-4821 (ISSN-L)
- PMC
- PMC3107069
- OpenAlex
- W2004364660
- Cited by
- 56
- References
- 39
- Citations by year
- 2024: 1 · 2022: 1 · 2021: 3 · 2020: 3 · 2019: 5 · 2018: 1 · 2017: 1 · 2016: 5 · 2015: 6 · 2014: 11 · 2013: 10 · 2012: 8
- FWCI
- 0.88
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Current Opinion in Nephrology & Hypertension (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Institute on Aging (K23AG028952)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
- Health Sciences › Medicine › Nephrology › Dialysis and Renal Disease Management
- Keywords
- palliative care, end-stage renal disease, chronic dialysis, hospice care, advance care planning, prognosis communication, end-of-life care, symptom management, barriers to palliative care, quality of dying
- MeSH terms
- Renal Dialysis, Humans, Kidney Failure, Chronic, Palliative Care, Quality of Life, Referral and Consultation, Treatment Outcome, Hospice Care, Practice Guidelines as Topic, Delivery of Health Care, Integrated, Advance Care Planning
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