Despite improvements in dialysis technology, the annual mortality rate of dialysis patients is 20% to 25% (1). The burden of symptoms for dialysis patients and those with advanced chronic kidney disease (CKD) who choose conservative care (i.e., no dialysis) is high (2), with the number and severity of symptoms (such as pain, nausea, anorexia, shortness of breath, insomnia, anxiety, and depression) rivaling those of many cancer patients (3–5). An increasing number of patients are dying after withdrawal of dialysis (10% to 15% in 1990; 20% in 2004) (1), representing the second leading cause of death after cardiovascular disease. Unfortunately, the majority of patients are not involved in these decisions because they lack decision-making capacity at the time the decision to withdraw dialysis is made (6). The vast majority of patients with CKD die in acute care facilities, without accessing palliative care services (7). Despite this, surprisingly little research has been done to study how these patients die or their preferences for end-of-life care. The objective of this study was to evaluate end-of-life care preferences of CKD patients. This will help identify gaps between current end-of-life care practice and patients' preferences and will help prioritize and guide future innovation in end-of-life care policy.
Materials and Methods
This study was part of a larger initiative to establish an end-of-life care approach for patients with CKD in the Northern Alberta Renal Program, a Canadian, university-affiliated renal program. Patients age 18 years or older with CKD receiving any form of chronic dialysis or kidney transplant and patients with stage 4 or 5 CKD (as per the Modification of Diet in Renal Disease formula for estimation of GFR <30 ml/min per 1.73 m2), who were cognitively able to complete the questionnaire in English (as perceived by their dialysis or clinic nurse), with or without the use of a translator, were eligible to participate. This involved the Home Dialysis Program (including peritoneal dialysis and home hemodialysis patients), in-center hemodialysis, and seven rural satellite hemodialysis units. Patients were consecutively sampled as they presented to dialysis, transplantation, or predialysis renal insufficiency clinics between January and April 2008. Transplantation patients were deemed appropriate for inclusion in this study because their kidney function was deteriorating.
An extensive review of the literature identified the factors considered important by patients and families for quality end-of-life care (8–11). The key elements were incorporated into a patient-complete survey to identify CKD patients' preferences and expectations for both patient and professionally derived indicators of quality end-of-life care, such as place of death, symptom treatment, and advance care planning. Preferences for hypothetical clinical end-of-life scenarios and demographic information were also included. Pilot testing of this survey was extensive: the survey was reviewed by physicians, nursing staff, allied health professionals, and administrators within the Northern Alberta Renal Program for face validity. It was then piloted in four dialysis units among 100 patients for construct validity and to address feasibility issues, such as patient understanding and acceptance. The survey was then approved by both the University of Alberta Research Ethics Board and the Northern Alberta Renal Program for implementation.
Patients were permitted to complete the self-administered survey in clinic or at home, returning them when they next presented for treatment. The project coordinator and assistants were available to help with the completion of the survey and to answer questions as they arose. Because the purpose of this study was descriptive, a formal sample size was not calculated. A convenience sample of at least 200 eligible patients from each treatment category or >50% of the total number of patients in those renal programs that had less than 400 patients was thought to be sufficient to represent patient preferences. Descriptive statistics were used to report the frequency for each of the response options from each survey question. The study was not powered to allow meaningful comparisons among predialysis, dialysis, and transplantation patients. In tables, the elements were ranked on the basis of the proportion of patients who rated each element as important.
Of 680 eligible patients that were approached, 584 patients (86%) completed the survey. Patient characteristics can be seen in Table 1. Although the numbers of peritoneal dialysis and home hemodialysis patients are small, they represent 51.4% and 61.5% of all patients in their respective programs. A total of 80% of the patients were white, slightly higher than the general dialysis population in this center, where approximately 73% of all patients are white.
Patients' self-reported knowledge is presented in Table 2. Most patients (84.6%) felt that they were well informed regarding their medical condition and prognosis, yet only 17.9% felt that their health would deteriorate over the next 12 months. The majority reported not knowing what palliative care and hospice are (83.4% and 71.8%, respectively). The importance of various elements of end-of-life care from patients' perspectives is presented in Table 3. Over 90% of participants responded that it was important that they receive detailed information about their medical condition, including prognostic information. Similarly, between 80% and 85% of patients responded that it was important to be informed about treatment options, including withdrawal from dialysis, planning for the future in case of death, and having physical symptoms, including pain, managed by the nephrology team. Most patients also felt it was important that nephrology programs incorporate quality of life, psychosocial, and spiritual concerns into nephrology care.
Patients' end-of-life care preferences are reported in Table 4. Although 89% of patients rely on family and friends for social and emotional support, over 50% of patients also rely on their nephrologist and nephrology nurse for this support. Many patients (35%) also report that they would want their nephrologist to be the one making medical decisions for them in the case of incapacity. The vast majority of patients did not report relying on support counselors or spiritual advisors for either their social/emotional support (15.8% and 13.5%, respectively) or surrogate decision-making (4.3% and 3.1%, respectively). Patients clearly rely on their nephrologist (79.5%) and their family physician (65.8%) for medical information. The majority of dialysis patients (60.7%) regretted their decision to start dialysis. When asked why dialysis had been chosen over conservative care (no dialysis), 51.9% reported that it was their physician's wish, and 13.9% stated that they chose dialysis because it was the family's wish. There were no differences in age, gender, race, time on dialysis, education, or marital status between patients who regretted their decision to be treated with chronic dialysis compared with those who did not regret their decision.
Questions around the issue of advance care planning showed that patients are comfortable discussing end-of-life issues with both family (69.7%) and nephrology staff (65.6%). However, 90.4% of patients reported that their nephrologist had not discussed prognosis with them, and only 38.2% had completed a personal directive. For those patients who report having completed an advance directive, 36.6% wanted full resuscitation and 17.5% were unsure of what decision they had made. Regardless of whether patients had completed an advance directive or not, all participants were asked their current preference for resuscitation in the event they had a cardiac arrest: 39% wanted to be resuscitated and 19% were unsure. Less than 18% of patients, however, preferred a course of treatment focused on extending life at the expense of prolonging pain and discomfort. More patients wanted to die at home (36.1%) or in an inpatient hospice (28.8%) compared with in a hospital (27.4%). Most of the patients (51.9%) reported not having had a discussion regarding end-of-life care preferences in the past 12 months, with less than 10% having had such a discussion with their nephrologist. Almost 50% of patients wanted to have these discussions with their nephrologist, 39% with their family doctor, and 20% wanted to involve their nephrology nurse. Patients felt that these discussions should be ongoing when the need arose (as defined by the medical team).
The elements of end-of-life care that patients most wanted incorporated into an end-of-life care program included greater education and support for both staff, patients, and families with respect to end-of-life issues, greater involvement of family in both care and decision-making, a greater focus on pain and symptom management, and routine end-of-life care discussions with greater physician involvement (Table 5). The end-of-life issues patients most wanted more knowledge of were what to expect clinically near the end of life, palliative care and hospice services, and symptom management.
The illness trajectory of patients dying with CKD differs from that of patients with cancer (12–14). There are also unique end-of-life issues, such as the withdrawal of dialysis, that are specific to these patients. The existence of different pathways to death has important implications for health care delivery; end-of-life issues that are important to CKD patients may differ from patients dying with other illnesses. Identifying these elements and preferences for care is essential for optimizing CKD care near the end of life.
Communication of prognosis and discussions related to planning for future death are lacking in the routine care of CKD patients. The vast majority of these patients did not appreciate the likelihood of clinical deterioration over the next year. Given the mean age of 68 years, these patients have a 50% survival rate of less than 3 years (1). These patients, however, feel it is important that they receive prognostic information and plan for future death. Most patients reported that they think about their future health and that they are comfortable talking about end-of-life care issues with both family and renal staff. Even those less comfortable with having these discussions still feel they needed to occur. This is consistent with a Canadian study where 97% of 100 general nephrology patients during their first visit to a nephrologist wanted detailed information about survival before obtaining informed consent for chronic dialysis and felt that the physician should provide this information without being prompted (15). Sentinel events (hospitalizations, acute illnesses) present opportunities to engage in end-of-life care discussions (16). Answering yes to a simple question “Would you be surprised if this patient died with the next year?” should also prompt the nephrology team to initiate these discussions (17).
Although patients want to primarily involve family and friends in end-of-life discussions, nephrologists and family physicians are considered integral to the process, and a substantial proportion of patients reported that they would rely on their nephrologist to make medical decisions on their behalf should they become incompetent to make decisions for themselves. Unfortunately, neither physicians nor family members are accurate in predicting patients' desires about life-sustaining treatments, including wishes for ongoing dialysis. In a study of 398 dialysis patients, only 44% of physicians correctly predicted the patient's current preference for cardiopulmonary resuscitation (CPR), 47% their wish for dialysis in a severely demented state, and 43% their wish for dialysis if they had terminal cancer. The corresponding figures for family members were 50%, 44%, and 47% (18). The majority of nephrologists do not feel well prepared to make end-of-life decisions for their patients (19). Physicians are often hesitant about having these conversations with their patients because of concerns about destroying patients' hope. Evidence is emerging, however, that for many dialysis patients, the opposite is true and that focusing on immediate clinical care without attention to future goals is a barrier to maintaining hope (20). Unfortunately, over 90% of patients in this study reported having had no discussion about prognosis with a doctor. Less than 10% have engaged in any form of end-of-life care discussion with their nephrologist, and even fewer with other healthcare professionals. In fact, most of these patients have no advance directive. Unless advance care planning that outlines goals for end-of-life care is systematically integrated into the care of ESRD patients, their end-of-life care needs are unlikely to be adequately met.
Patients clearly need enhanced education with respect to end-of-life care issues. Most patients in this study prefer care focused on decreasing pain and suffering; only 18% of patients preferred clinical care that focuses on extending life, even if at the expense of prolonging pain and discomfort. Unfortunately, dialysis patients typically have poor knowledge of their chances of survival after CPR (21,22). Despite the fact that CPR rarely extends survival for dialysis patients (23–26), over a third of these patients would want to be resuscitated.
Many of these patients regret their decision of dialysis over conservative care. Although symptoms or a history of depression were not elicited, given the high prevalence of depression in CKD, depression could have been an important driver of some patient responses. Regardless, these patients reported that their decision to be treated with dialysis reflects physicians' and family members' preferences rather than personal choice. This highlights the need to reevaluate decision-making around the initiation of dialysis and involving patients in discussions about prognosis and goals of care (27). New tools for facilitating advance care planning in CKD are available, and an approach that emphasizes a relational, patient-centered process that focuses on broader goals of care has been developed (28,29). The lack of knowledge of palliative care will obviously hinder patients' appreciation for the supportive care services that could be made available to them, especially if they choose conservative care.
Not surprisingly, symptom management was clearly a priority for patients who felt that this was a responsibility of their renal care team. Unfortunately, pain in CKD is both under-recognized (30) and undertreated (31). The nephrologist and nephrology nurse are also perceived as important for providing emotional, social, and spiritual support. This supportive role was once recognized as an integral component of medicine. However, with the advent of modern technology, physicians have departed from this role, with emotional and spiritual support falling largely to nursing staff and allied health professionals, such as social workers, spiritual counselors, and pastoral care. The vast majority of these patients do not rely on support counselors or spiritual advisors for their social and emotional support. This may reflect a lack of presence of these members of the multidisciplinary team in our renal program. How open patients would be to these allied health professionals if they were more readily available is not clear.
Previous studies involving palliative patients suggest a preference for dying at home followed by inpatient hospice care (32). However, more recently, a Canadian study of hospitalized patients with cancer and end-stage medical conditions suggested that only half of all patients and family caregivers report a preference for a home death (33). Our data confirm that although approximately one fourth of patients preferred to die in hospital, 65% of patients preferred to die either at home or in a hospice. Given the poor self-reported knowledge of palliative care and hospice, this proportion of patients may increase as they are made aware of the potential benefits associated with palliative and hospice care. Unfortunately, the vast majority of dialysis patients die in acute care facilities, without accessing palliative care services (7). End-of-life care policies and resources should be directed toward ensuring that patients die in their location of choice, which includes not only home but within-institutional settings, such as in-patient hospice.
There are several limitations of this study, some of which are intrinsic to the use of questionnaires. Responses can be difficult to interpret because patients' understanding of questions and reasons why they answer as they do are not sought directly. These findings are limited predominantly to white, English-speaking patients. Our data, however, highlight end-of-life clinical practices that do not meet the needs for patients with CKD. Changing attitudes and improving the knowledge of renal health care professionals and patients about palliative care are going to be the key to improving renal supportive care. We also need to define the role that various members of the multidisciplinary team will play in the provision of end-of-life care, such as symptom management, advance care planning, and psychosocial and spiritual support. This study, however, is a first step in identifying gaps between current end-of-life care practice and patients' preferences and will hopefully help prioritize and guide future innovation in renal end-of-life care policy. Recommendations for end-of-life care practices that should be integrated into CKD care are outlined in Table 6.
I would like to thank Susan Hughes, Connie Maitland, Oceanna Hall, and Lorna Kot for project coordination and facilitation of data gathering, as well as Sandi Prinse for data entry and Tammy Bach for help with the data analysis, without whose help this project would not have been possible.
Published online ahead of print. Publication date available at www.cjasn.org.
See related editorial, “Education and End of Life in Chronic Kidney Disease: Disparities in Black and White,” on pages 163–166.
1. U.S. Renal Data System, National Institutes of Health, and National Institute of Diabetes and Digestive and Kidney Diseases. USRDS 2007 Annual Data Report: Atlas of Chronic Kidney Disease and End-Stage Renal Disease in the United States. Bethesda, 2007
2. Chater S, Davison SN, Germain MJ, Cohen LM: Withdrawal from dialysis: A palliative care perspective. Clin Nephrol 66: 364–372, 2006
3. Davison SN, Jhangri GS, Johnson JA: Cross-sectional validity of a modified Edmonton symptom assessment system in dialysis patients: A simple assessment of symptom burden. Kidney Int 69: 1621–1625, 2006
4. Davison SN, Jhangri GS, Johnson JA: Longitudinal validation of a modified Edmonton symptom assessment system (ESAS) in haemodialysis patients. Nephrol Dial Transplant 21: 3189–3195, 2006
5. Saini T, Murtagh FE, Dupont PJ, McKinnon PM, Hatfield P, Saunders Y: Comparative pilot study of symptoms and quality of life in cancer patients and patients with end stage renal disease. Palliat Med 20: 631–636, 2006
6. Sekkarie MA, Moss AH: Withholding and withdrawing dialysis: The role of physician speciality and education and patient functional status. Am J Kidney Dis 31: 464–472, 1998
7. Murray AM, Arko C, Chen SC, Gilbertson DT, Moss AH: Use of hospice in the United States dialysis population. Clin J Am Soc Nephrol 1: 1248–1255, 2006
8. Heyland DK, Dodek P, Rocker G, Groll D, Gafni A, Pichora D, Shortt S, Tranmer J, Lazar N, Kutsogiannis J, Lam M: What matters most in end-of-life care: Perceptions of seriously ill patients and their family members. CMAJ 174: 627–633, 2006
9. Steinhauser KE, Clipp EC, McNeilly M, Christakis NA, McIntyre LM, Tulsky JA: In search of a good death: Observations of patients, families and providers. Ann Intern Med 132: 825–832, 2000
10. Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre LM, Tulsky JA: Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA 284: 2476–2482, 2000
11. Singer PA, Martin DK, Kelner M: Quality end-of-life care. Patients' perspectives. JAMA 281: 163–168, 1999
12. Lunney JR, Lynn J, Foley DJ, Lipson S, Guralnik JM: Patterns of functional decline at the end of life. JAMA 289: 2387–2392, 2003
13. Teno JM, Weitzen S, Fennell ML, Mor V: Dying trajectory in the last year of life: Does cancer trajectory fit other diseases? J Palliat Med 4: 457–464, 2001
14. Covinsky KE, Eng C, Lui LY, Sands LP, Yaffe K: The last 2 years of life: Functional trajectories of frail older people. J Am Geriatr Soc 51: 492–498, 2003
15. Fine A, Fontaine B, Kraushar MM, Rich BR: Nephrologists should voluntarily divulge survival data to potential dialysis patients: A questionnaire study. Perit Dial Int 25: 269–273, 2005
16. Davison SN: Advance care planning in patients with end stage renal disease. Prog Palliat Care 17: 170–178, 2009
17. Moss AH, Ganjoo J, Sharma S, Gansor J, Senft S, Weaner B, Dalton C, MacKay K, Pellegrino B, Anantharaman P, Schmidt R: Utility of the “surprise” question to identify dialysis patients with high mortality. Clin J Am Soc Nephrol 3: 1379–1384, 2008
18. Miura Y, Asai A, Matsushima M, Nagata S, Onishi M, Shimbo T, Hosoya T, Fukuhara S: Families' and physicians' predictions of dialysis patients' preferences regarding life-sustaining treatments in Japan. Am J Kidney Dis 47: 122–130, 2006
19. Davison SN, Jhangri GS, Holley JL, Moss AH: Nephrologists' reported preparedness for end-of-life decision-making. Clin J Am Soc Nephrol 1: 1256–1262, 2006
20. Davison SN, Simpson C: Hope and advance care planning in patients with end stage renal disease: Qualitative interview study. BMJ 333: 886–2006
21. Moss AH, Hozayen O, King K, Holley JL, Schmidt RJ: Attitudes of patients toward cardiopulmonary resuscitation in the dialysis unit. Am J Kidney Dis 38: 847–852, 2001
22. Ostermann ME, Nelson SR: Haemodialysis patients' views on their resuscitation status. Nephrol Dial Transplant 18: 1644–1647, 2003
23. Moss AH, Holley JL, Upton MB: Outcomes of cardiopulmonary resuscitation in dialysis patients. J Am Soc Nephrol 3: 1238–1243, 1992
24. Lai M, Hung K, Huang J, Tsai T: Clinical findings and outcomes of intra-hemodialysis cardiopulmonary resuscitation. Am J Nephrol 19: 468–473, 1999
25. Lafrance JP, Nolin L, Senecal L, Leblanc M: Predictors and outcome of cardiopulmonary resuscitation (CPR) calls in a large haemodialysis unit over a seven-year period. Nephrol Dial Transplant 21: 1006–1012, 2006
26. Hijazi F, Holley JL: Cardiopulmonary resuscitation and dialysis: Outcome and patients' views 7. Semin Dial 16: 51–53, 2003
27. Renal Physicians Association and the American Society of Nephrology Working Group: Shared Decision Making in the Appropriate Initiation of and Withdrawal from Dialysis, 2nd Ed., Washington, DC, 2000
28. Davison SN: Facilitating advance care planning for patients with end-stage renal disease: the patient perspective. Clin J Am Soc Nephrol 1: 1023–1028, 2006
29. Davison SN, Torgunrud C: The creation of an advance care planning process for patients with ESRD. Am J Kidney Dis 49: 27–36, 2007
30. Weisbord SD, Fried LF, Mor MK, Resnick AL, Unruh ML, Palevsky PM, Levenson DJ, Cooksey SH, Fine MJ, Kimmel PL, Arnold RM: Renal provider recognition of symptoms in patients on maintenance hemodialysis. Clin J Am Soc Nephrol 2: 960–967, 2007
31. Bailie GR, Mason NA, Bragg-Gresham JL, Gillespie BW, Young EW: Analgesic prescription patterns among hemodialysis patients in the DOPPS: Potential for under prescription. Kidney Int 65: 2419–2425, 2004
32. Higginson IJ, Sen-Gupta GJ: Place of care in advanced cancer: A qualitative systematic literature review of patient preferences. J Palliat Med 3: 287–300, 2000
33. Stajduhar KI, Allan DE, Cohen SR, Heyland DK: Preferences for location of death of seriously ill hospitalized patients: perspectives from Canadian patients and their family caregivers. Palliat Med 22: 85–88, 2008
34. Cohen LM, Ruthazner R, Moss AH, Germain MJ: Predicting six-month mortality for patients who are on maintenance hemodialysis. Clin J Am Soc Nephrol 5: 72–79, 2010
35. Davison SN: Pain in hemodialysis patients: Prevalence, cause, severity, and management. Am J Kidney Dis 42: 1239–1247, 2003
36. Weisbord SD, Fried LF, Arnold RM, Fine MJ, Levenson DJ, Peterson RA, Switzer GE: Prevalence, severity, and importance of physical and emotional symptoms in chronic hemodialysis patients. J Am Soc Nephrol 16: 2487–2494, 2005
37. Weisbord SD, Carmody SS, Bruns FJ, Rotondi AJ, Cohen LM, Zeidel ML, Arnold RM: Symptom burden, quality of life, advance care planning and the potential value of palliative care in severely ill haemodialysis patients. Nephrol Dial Transplant 18: 1345–1352, 2003
38. Murtagh FE, Addington-Hall J, Higginson IJ: The prevalence of symptoms in end-stage renal disease: A systematic review. Adv Chronic Kidney Dis 14: 82–99, 2007