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Dialysis Discontinuation: Quo Vadis?

2007; Elsevier BV; Volume: 14; Issue: 4 Linguagem: Inglês

10.1053/j.ackd.2007.07.008

1548-5609

Fliss EM Murtagh, Lewis M. Cohen, Michael J. Germain,

Muscle and Compartmental Disorders

Approximately 1 in 4 deaths of patients maintained on dialysis in the United States is preceded by a decision to discontinue treatment. Once considered to be a form of suicide, dialysis discontinuation is now increasingly common in most countries that are fortunate enough to offer renal replacement therapies. Given an aging and progressively sicker chronic kidney disease patient population, the rate of terminating dialysis is likely to increase. The literature on dialysis discontinuation includes studies principally from Canada, the United Kingdom, and the United States. The research is reviewed, critiqued, and examined to determine its relevance to practice. Future issues include the need to explore variability in dialysis practice as well as employment of a more patient-centered approach that is consistent with modern palliative medicine. Approximately 1 in 4 deaths of patients maintained on dialysis in the United States is preceded by a decision to discontinue treatment. Once considered to be a form of suicide, dialysis discontinuation is now increasingly common in most countries that are fortunate enough to offer renal replacement therapies. Given an aging and progressively sicker chronic kidney disease patient population, the rate of terminating dialysis is likely to increase. The literature on dialysis discontinuation includes studies principally from Canada, the United Kingdom, and the United States. The research is reviewed, critiqued, and examined to determine its relevance to practice. Future issues include the need to explore variability in dialysis practice as well as employment of a more patient-centered approach that is consistent with modern palliative medicine. In 2006, 24.5% of deaths of patients maintained with dialysis in the United States were preceded by a decision to discontinue treatment.1USRDS annual data report.Am J Kidney Dis. 2006; 49: s1-s235Google Scholar Once conceptualized as being a form of suicide,2Kimmel P.L. Psychosocial factors in dialysis patients.Kidney Int. 2001; 59: 1599-1613Crossref PubMed Scopus (279) Google Scholar dialysis discontinuation is now considered to be an acceptable practice in most countries that are fortunate enough to be able to offer renal replacement therapies. The effective removal of entrance criteria for initiating treatment with dialysis has led to an older and sicker end-stage renal disease (ESRD) patient population. Patients endure not only the symptoms associated with dialysis but also those of increasing age and multiple comorbid illnesses, such as diabetes. During the past couple of decades, the countries of North America and Western Europe have shifted in their views on dying, and the default position no longer is to do everything possible to extend life while ignoring the amount of suffering or the financial and social costs of treatment. The literature on dialysis discontinuation includes studies conducted principally in Canada, the UK, and United States. Discontinuation of dialysis is a paradigmatic example of the cessation of life support. In the United States, the rate of dialysis termination before ESRD patient deaths has increased each year and is likely to continue increasing.1USRDS annual data report.Am J Kidney Dis. 2006; 49: s1-s235Google Scholar Dialysis withdrawal research has been conducted since the 1980s and now includes nearly 20 studies (Table 1). These have focused on a number of questions that are listed in Table 2.Table 1Dialysis Withdrawal ResearchStudy, Authors, Year, and LocationFocus of StudyMethodsStudy Population, Denominator Population, and Comparison Group, if anyFindingsCritique and Relevance to PracticeRodin et al, 1981,9Rodin G.M. Chmara J. Ennis J. et al.Stopping life-sustaining medical treatment: Psychiatric considerations in the termination of renal dialysis.Can J Psychiatry. 1981; 26: 540-544Crossref PubMed Scopus (36) Google Scholar CanadaPsychiatric aspects of the decision to withdraw from dialysis.Retrospective review of clinical records between 1976 and 1979, plus discussions with staff.21 patients withdrawing from dialysis, out of 80 deaths in dialysis unitNo comparisons made.No data on race.Deaths after withdrawal of dialysis represented 26% of all deaths.Decision initiated by patient in 7 cases, by staff in 14 cases (of which 10 patients were judged not competent).Clinical and ethical issues were described and discussed. No demographic or other description of study population was presented nor comparison with dialysis population to clarify practice or enable assessment of generalizability.Neu and Kjellstrand, 1986,3Neu S. Kjellstrand C.M. Stopping long-term dialysis An empirical study of withdrawal of life-supporting treatment.N Engl J Med. 1986; 314: 14-20Crossref PubMed Scopus (261) Google Scholar USAnalysis of dialysis withdrawal practice.Retrospective review of clinical records between 1966 and 1983, with minimum 1-year follow-up.155 withdrawal patients out of 704 who died, from a population of 1,766 dialysis patients. No data on race.9% (155/1766) died after dialysis withdrawal (22% of all deaths).Of those discontinuing, 50% lacked capacity; in 40%, the decision was initiated by doctor, and in 60%, decision initiated by patient or family.Older age and diabetes were associated with withdrawal.Survival: mean 8.1 days (±SD, 5.3; range, 1–29 days)The first systematic attempt to analyze dialysis withdrawal practice. It reports practice between 1966 and 1983. Practice (and possibly decision making) has changed considerably since that time. Data were extracted from clinical records and likely subject to recording bias, with potential underascertainment of factors associated with dialysis withdrawal.This study raised considerable controversy; subsequent correspondence highlighted concern about the potential impact of such research on increasing withdrawal rates and showed widely differing practices in other units. It also stressed the importance of psychiatric assessment before withdrawal.The major contribution of this study was in describing withdrawal rates notably higher than previously evident from the disease registries, thus highlighting the underreporting to the registries. It also opened up the debate around withdrawal from dialysis. The factors described did not provide a clear predictive model for withdrawal, nor was it possible to elucidate precise reasons for withdrawal of dialysis, which were clearly complex.Hirsch, 1989,4Hirsch D.J. Death from dialysis termination.Nephrol Dial Transplant. 1989; 4: 41-44PubMed Google Scholar CanadaAnalysis of dialysis withdrawal practice.Retrospective review of clinical records, between 1982 and 1987.11 withdrawal patients out of 69 who died, from a population of 178 dialysis patientsComparison was made with those continuing dialysis.No data on race.6% (11/178) died after dialysis withdrawal (16% of all deaths). Mean age of those withdrawing, 67 years (±SD, 5)In 3 cases, the decision was initiated by doctor; in 6 cases, the decision initiated by patient; and in 2 cases, by family.No difference in age and comorbidity between those withdrawing and those continuing dialysis.Survival: mean 10 days (±SD, 2)This study replicated the work of Neu and Kjellstarnd to describe practice in Canada. The main difference is the much small numbers obtained from a single renal unit. Although it concluded that it was not possible to differentiate patients withdrawing from dialysis from those continuing treatment, it is likely that the small numbers made any potential differences impossible to detect. It also suffered from the same retrospective constraints.Holley et al. 1989,7Holley J.L. Finucane T.E. Moss A.H. Dialysis patients' attitudes about cardiopulmonary resuscitation and stopping dialysis.Am J Nephrol. 1989; 9: 245-251Crossref PubMed Scopus (47) Google Scholar USAttitudes to dialysis withdrawal among dialysis patientsSurvey of dialysis cohort (+ ambulatory elderly) to identify wishes for medical information, decision-making participation, CPR, and dialysis withdrawal.51 of 54 hemodialysis (HD) patients, 35 of 36 peritoneal dialysis (PD) patients, and 24 of 26 transplant (Tx) patients.Demographics: 2 patients black, remainder white.17/49 (35%) HD, 18/35 (51%) PD and 9/21 (43%) Tx patients would choose to stop dialysis if "in a coma."29/50 (58%) HD, 22/35 (63%) PD, and 11/20 (55%) Tx patients would choose to stop dialysis if "in a permanent coma."Few dialysis patients had considered stopping dialysis.This study identified clear differences between the preferences of HD and PD patients that could not be accounted for by demographic factors such as age, sex, time on dialysis, or living situation. The main value of it is showing the lack of consideration of stopping dialysis among patients on dialysis.The use of a structured questionnaire standardized replies but was not intended to elucidate any of the reasons behind the responses. It was also undertaken with relatively small numbers, and the findings need replication in larger populations.Port et al, 1989,5Port F.K. Wolfe R.A. Hawthorne V.M. et al.Discontinuation of dialysis therapy as a cause of death.Am J Nephrol. 1989; 9: 145-149Crossref PubMed Scopus (83) Google Scholar USAnalysis of dialysis withdrawal practice.Analysis of Kidney Registry data, between 1980 and 1986.282 withdrawal patients from a population of 5,208 dialysis patients.Comparison was made with the whole ESRD population.60% were white, 36% were black, and 4% other.Findings: 5% (282/5,208) died after dialysis withdrawal.White race, older age, longer duration of dialysis and hypertensive, and diabetic nephropathy were associated with withdrawal (all highly significantly). Diabetes showed the greatest increase in RR. RR was 0.28 in black versus white (P < .001).Survival: mean 10.1 days.This study has the advantage of being one of the largest analyses of dialysis withdrawal. Although it might be expected that the accuracy of data is less than within an individual renal unit, the Registry data are in fact reported as 98% complete. The larger numbers of deaths means that high significance levels were obtained for the differences in the individual factors and the greater number of factors identified compared with other studies.Cohen et al, 1993,8Cohen L.M. Germain M. Woods A. et al.Patient attitudes and psychological considerations in dialysis discontinuation.Psychosomatics. 1993; 34: 395-401Abstract Full Text PDF PubMed Scopus (27) Google Scholar USAttitudes to dialysis withdrawal among dialysis patients.Structured interview, asking patients to consider their thoughts about discontinuing dialysis.36 dialysis patients (65% of all dialysis patients at the participating center), 75% white, 19% black, and 6% Hispanic.81% knew it was an option; 9% did not.92% stated their nephrologists had never discussed it with them.92% had never told their doctor their preferences regarding dialysis; 72% had not discussed with family.Most patients would never or almost never consider stopping dialysis in dementia, dependence on others, blindness, nursing home placement, severe pain, bowel incontinence, emotional distress, and other similar scenarios.This study corroborates the work of Holley and colleagues (and others) in showing that dialysis-dependent patients rarely think about dialysis withdrawal. Again, it relies on relatively small numbers but explored the issues raised in greater depth. It also followed patients 1 year later to suggest considerable divergence between reflections and actual decisions.Mailloux et al, 1993,6Mailloux L.U. Bellucci A.G. Napolitano B. et al.Death by withdrawal from dialysis: A 20-year clinical experience.J Am Soc Nephrol. 1993; 3: 1631-1637PubMed Google Scholar USFactors associated with dialysis withdrawal.Retrospective review of clinical records (electronic database) between 1970 and 1989.63 withdrawal patients out of 340 who died, from a population of 716 dialysis patients.Comparison was made with those dying from other causes.9% (63/716) died after dialysis withdrawal (18% of all deaths).Median age of those withdrawing, 67 years (range, 19–86)Data on decision making not given.Patients withdrawing from dialysis were significantly older than those dying from other causes.Survival data not given.Small numbers limit inferences from this study, as with a number of the other studies on dialysis withdrawal practice. Comorbid conditions and precipitating factors associated with withdrawal are discussed, but as with all the retrospective studies, these data are difficult to interpret and classify. The decision not to continue dialysis is represented as a complex and multifactorial decision.Cohen et al, 1995,30Cohen L.M. McCue J.D. Germain M. et al.Dialysis discontinuation A 'good' death?.Arch Intern Med. 1995; 155: 42-47Crossref PubMed Scopus (89) Google Scholar USThe quality of dialysis withdrawal deaths.Prospective study of patients withdrawing from dialysis.11 of 19 patients withdrawing from dialysis during the study period were studied prospectively using separate semistructured interviews with patient and family. The remaining 8 were studied retrospectively using staff data and records. 79% white.Mean age of those withdrawing, 72.7 years (range, 58–84). Of the 11 studied prospectively, 4 were competent, and the status of 1 was unclear. The decision to withdraw was made by the patient in 1 case, by the family in 4 cases, and by both in 6 cases.Survival: mean, 9.6 days (range, 2–34)7 patients were judged to have had a good death, whereas 4 were judged to have had a poor quality death.This was a small sample, and conclusions cannot be generalized to the dialysis withdrawal population as a whole. However, it was one of the first prospective studies to explore quality of death and to introduce methods pertinent to the dialysis withdrawal population. This preliminary work showed that about two thirds of these patients appeared to have a good death, although one third did not.The study served to highlight some of the difficulties of research with dying patients including the constraints on research burden, the need for timely referral and follow through, and the need for both qualitative and quantitative research methods.Bajwah et al, 1996,10Bajwa K. Szabo E. Kjellstrand C.M. A prospective study of risk factors and decision making in discontinuation of dialysis.Arch Intern Med. 1996; 156: 2571-2577Crossref PubMed Google Scholar CanadaStudy of risk factors for dialysis withdrawal and dialysis decision making.Prospective study, following dialysis patients before dialysis withdrawal. Questionnaires, clinical records, and interviews were used.235 dialysis patients, of whom 76 patients died (13 from dialysis discontinuation), 10/13 white.6% (13/235) died after dialysis withdrawal (17% of all deaths).Mean age of those withdrawing, 55 yrs (±SD, 17). Comorbidity (RR, 2.19), living with partner (RR, 0.52), and no severe pain (RR, 0.30) were independently associated with dialysis withdrawal.This study was prospective, collecting data on all dialysis patients using validated instruments. It clearly involved a considerable amount of work to capture data relating to a relatively small number of withdrawals. As in other studies, a reliable predictive model for discontinuing dialysis was not identified. Given the small numbers who died after withdrawal, this is not surprising.The authors revisited all cases of dialysis discontinuation to try and identify the reasons for withdrawal, providing individual descriptions of the reasons. They concluded that the decision to discontinue dialysis is "an existential problem which cannot be described precisely by general risk factor analysis."Catalano et al, 1996,52Catalano C. Goodship T.H.J. Graham K.A. et al.Withdrawal of renal replacement therapy in Newcastle upon Tyne: 1964-1993.Nephrol Dial Transplant. 1996; 11: 133-139Crossref PubMed Scopus (37) Google Scholar UKAnalysis of dialysis withdrawal practice.Retrospective review of clinical records between 1964 and 1993.88 withdrawal patients out of 589 who died, from a population of 1,639 dialysis patients.Comparison made between those who died from dialysis withdrawal and the whole dialysis populationNo data on race.5% (88/1639) died after dialysis withdrawal (17% of all deaths).Mean age of those withdrawing, 62 yrs (±SD, 12).Of those discontinuing, 50% lacked capacity. In 50%, the decision was initiated by doctor, in 24% by the patient, and in 22% by the family.Age and diabetes associated with withdrawal.Survival: median, 8 daysAgain, dialysis practice has changed, withdrawal practice has likely changed, and decision making has potentially changed. Deaths caused by dialysis discontinuation were reviewed by year but without any clear variation over time (the number of deaths each year was very small).Data were extracted from clinical records and likely subject to recording bias, with potential underidentification of factors associated with withdrawal. (The cause of withdrawal was specifically acknowledged to be difficult to identify retrospectively from clinical records). The identification of who initiated withdrawal discussions was only possible in 72% of cases (proportions given in findings relate only to this 72%).Bordenave et al, 1997,11Bordenave K. Tzamaloukas A.H. Conneen S. et al.Twenty-one year mortality in a dialysis unit: changing effect of withdrawal from dialysis.ASAIO J. 1998; 44: 194-198Crossref PubMed Scopus (22) Google Scholar USAnalysis of dialysis withdrawal practice.Retrospective review of clinical records between 1976 and 1996.62 withdrawal patients of 304 who died from a population of >800 dialysis patients.Comparison made between those who died after withdrawal of dialysis and those who died from other causes while on dialysis.Comparisons were also made by 7-year periods. No data on race.Annual mortality varied between 14% and 42%. Of all deaths, 62/304 (20%) were after withdrawal of dialysis.Mean age of those withdrawing, 67 yrs (±SD, 11). No differences in duration of dialysis between those dying on dialysis or after withdrawal, but comorbidity and functional impairment were higher in those withdrawing from dialysis.32/62 decision made by patient, 30/62 decision made by family (patient not competent).Diabetes, limited activities of daily living, and more recent vintage (1990–1996) associated with withdrawal.Survival: mean, 10.4 days (±SD, 5.8).This study repeated the earlier work by Neu and Kjellstrand but also attempted to address the impact of changing dialysis practice over time. Like other studies, a clear predictive model for dialysis withdrawal did not emerge, but some useful data on changes over time were noted. Dialysis withdrawal rates increased particularly during 1990–1996. The authors state that most patients who withdrew from dialysis during this period had advanced or terminal illnesses, but data on the individual time periods were not presented, making it hard to evaluate. It may indicate changing patterns in the practice of dialysis withdrawal but could also indicate that dialysis has been more readily started in patients with advanced or terminal illnesses.Leggat et al, 1997,13Leggat Jr, J.E. Bloembergen W.E. Levine G. et al.An analysis of risk factors for withdrawal from dialysis before death.J Am Soc Nephrol. 1997; 8: 1755-1763PubMed Google Scholar USAnalysis of US dialysis withdrawal practice.Retrospective analysis of US Renal Data System records for all deaths between 1990 and 1995.20,796 deaths preceded by withdrawal out of 116,829 deaths from all causes in Medicare ESRD patients.Comparison made between those who died after withdrawal of dialysis and those who died from all causes. Demographics: of all deaths (116,829), 67.4% were white, 28.5% black, 1.7% Asian, 1.2% Native American, and 1.3% other or unknown.17.8% (20,796/116,829) of all deaths were preceded by dialysis withdrawal.Odds of dialysis withdrawal before death: female, 1.25; black, 0.49; Asian, 0.52; Native American, 0.93 (compared with 1.00 reference for whites).Increased risk of dialysis withdrawal with age (3% increase in the odds of withdrawal with each additional year of age after 65).This study was able to undertake analyses in much greater detail because of the large numbers involved. Not all the factors associated are given here; for example, cause of renal disease and dialysis modality were also analyzed. The strength of this study was its size, which enabled the investigators to control for the effects of many other factors, assessing the size of each factor independently.The authors proposed that sociocultural factors may explain the variations in dialysis withdrawal because gender and ethnic differences cannot be explained medically. They also recognized that dialysis acceptance rates are likely to be reflected in withdrawal rates too, but that prospective studies to allow for this influence have been difficult to undertake.Cohen et al, 2000,31Cohen L.M. Germain M.J. Poppel D.M. et al.Dying well after discontinuing the life-support treatment of dialysis.Arch Intern Med. 2000; 160: 2513-2518Crossref PubMed Scopus (87) Google Scholar, 32Cohen L.M. Germain M. Poppel D.M. et al.Dialysis discontinuation and palliative care.Am J Kidney Dis. 2000; 36: 140-144Abstract Full Text Full Text PDF PubMed Google Scholar, US and CanadaThe quality of dying after dialysis withdrawal.A prospective study, using open-ended, structured patient or family interviews, and a "quality of dying" tool.79 patients withdrawing from dialysis, out of 131 deaths preceded by withdrawal of dialysis in 8 clinics.The comparison of demographics made with those not included in the study.Demographics: of the 79 patients studied, 76% were white, 18% black, 5% Hispanic, and 1% Asian.No significant associations between quality of death and ethnicity.Mean age of those withdrawing, 70 years ±SD, 1.6 (range, 17–89).43% were alert 48 hrs after the dialysis withdrawal decision; the remainder were somnolent or comatose.Only 23/79 (29%) patients could be interviewed themselves. 76/79 interviews were conducted with family.This study is the first to attempt systematically to measure the quality of death for patients withdrawing from dialysis. It explores what patients and families consider a "good death," informed by immediacy because all were either facing their own death or the death of their relative. However, the small number of patients interviewed (and also the selection bias toward women) limits the extent to which these data can be regarding how the wider withdrawal population and their families might describe a good death.Cohen et al,33Cohen L.M. Dobscha S.K. Hails K.C. et al.Depression and suicidal ideation in patients who discontinue the life-support treatment of dialysis.Psychosom Med. 2002; 64: 889-896Crossref PubMed Scopus (39) Google Scholar USPrevalence of major depression and suicidal ideation in patients who withdraw from dialysis.Prospective study, using structured interview based on psychiatric consultation.79 patients withdrawing from dialysis as above.When asked the characteristics of a good death, patients described pain free (53%), peaceful (37%), and brief (26%), and families described pain free (67%), peaceful (41%), brief (32%), and loved one present (15%).In the last 24 hours, pain was reported in 47% of deaths (severe in 5%), agitation in 30%, myoclonus 28%, and dyspnea 25%.Survival: mean, 8.2 days (±SD, 0.7) and range, 1–46 days.Comparisons with those not included in the study revealed no differences in ethnicity religion, marital status, or duration of dialysis, although significant difference in sex distribution was noted (more women completed the study).20/23 patients and 72/76 families replied to questions on depression.10% (95% CI, 1%–32%) of patients reported 5 or more individual depression criteria.22% (95% CI, 13%–34%) of families reported 5 or more individual depression criteria.25% (95% CI, 16%–36%) of families interviewed separately believed the patient to be depressed.This is one of the few studies that reports data on symptom prevalence and severity. Necessarily, it relies heavily on proxy report. Symptoms are common in the last day of life, although not reported as severe. The proxy data reported are a mixture of families and staff (mostly nurses). This is problematic because the bias directions of proxy reporting are different between family and staff (eg, staff often underreport symptoms, whereas families may overreport symptoms).These additional data on depression are the first study of depression in this population. Findings suggest that prevalence of depression among this group is similar to that described in the ESRD population in general, although conclusions are constrained by the small numbers of patients who could be interviewed and potential selection bias in referral into the study.Wenger et al, 2000 (SUPPORT study⁎The SUPPORT study included 565 patients with renal failure out of 9,105 seriously ill hospitalized patients between 1989 and 1994. Only the dialysis withdrawal/dialysis continuation groups are discussed.),50Wenger N.S. Lynn J. Oye R.K. et al.Withholding versus withdrawing life-sustaining treatment: patient factors and documentation associated with dialysis decisions.J Am Geriatr Soc. 2000; 48: S75-S83PubMed Google Scholar USFactors associated with withholding or withdrawing dialysis and decision making.Prospective study, using patient or surrogate interviews, plus chart review.96 patients withdrawing from dialysis, out of 565 seriously ill hospitalized patients who required dialysis.Compared with 92 patients in whom dialysis was withheld and 377 patients who continued dialysis. Of the 96 patients withdrawn from dialysis, 85% were white.No significant associations between having dialysis withdrawn and ethnicity. The mean age of those withdrawing was 63 years (range, 45–70).100% of those withdrawing had decision documented in the records. 83% had discussions with patient or family documented, but in only 18% were direct discussions with the patient documented.No differences in comorbidity between those continuing on dialysis or those withdrawing.The entry criteria and demographics, including the younger age, indicate that this study (which focused on seriously ill hospitalized patients rather than longer-term dialysis patients) relates to a somewhat different study population: those who developed the need for dialysis while in hospital. It is likely to include more patients with acute rather than chronic kidney disease. Nevertheless, it is useful in elucidating decisions to withhold dialysis in this context. With respect to dialysis withdrawal, it is limited to throwing light on documentation of decisions; the findings suggest communication with the family is common, but communication with the patient much less so. It is not clear whether this relates to lack of competence.Birmele et al, 2004,12Birmele B. Francois M. Pengloan J. et al.Death after withdrawal from dialysis: The most common cause of death in a French dialysis population.Nephrol Dial Transplant. 2004; 19: 686-691Crossref PubMed Scopus (74) Google Scholar FranceAnalysis of dialysis withdrawal practice.Retrospective review of clinical records, using predefined questions for data extraction.40 withdrawal patients out of 196 deaths during 2001, among 1,436 diaysis patients.Comparison made between those who died after withdrawal of dialysis and those who died while on dialysis. Patients almost exclusively white.5% (40/1436) died after dialysis withdrawal (20% of all deaths).The mean age of those withdrawing was 77 years (range, 46–94).4/40 decision made by patient, 5/40 decision made by family, 4/40 decision made by staff, 27/40 combined decision. 32/40 patients were not competent at withdrawal.No differences in comorbidity, primary renal pathology, place of care, or family status between deaths on dialysis or deaths after withdrawal. Patients withdrawing were more functionally dependent.Survival: mean 8.5 days (±SD, 4.8), median 7 days (range, 4–21)This study makes useful comparisons between those dying on dialysis and those dying after withdrawal. However, the biggest determinant of both these groups is likely to be clinical practice. Certain findings, such as the higher proportion of deaths after withdrawal and the high level of incapacity at withdrawal, suggest that there may be differences either in the population or in practice (or both) compared with other studies. Certainly, this study reports the highest mean age of those withdrawing from dialysis.Cohen et al, 2005,34Cohen L.M. Germain M.J. Woods A.L. et al.The family perspective of ESRD deaths.Am J Kidney Dis. 2005; 45: 154-161Abstract Full Text Full Text PDF PubMed Scopus (42) Google Scholar USUnderstanding the family perspective on ESRD deaths.Postal questionnaire (using PDFQ†PDSQ is the Post-Death Family Questionnaire, which is based on the After-Death Bereaved Family Member Interview and the Memorial Symptom Assessment Scale Short Form.) to the principal family caregiver 6–8 weeks after the death.86 out of 188 questionnaires sent out (response rate 46%) between 1999 and 2001. These 188 assumed to represent all deaths in the 5 participating renal units, although this is not specified.Comparison is made between deaths on dialysis or after withdrawal. Ethnicity of patient or carer not given, but described as "demographically mixed."73.8% of those surveyed felt that the health care team had been sensitive to culture/ethnicity. Patients were found to die predominantly in institutional settings, and with heavy symptom burden. 73% of patients were perceived to be in pain in the last week of life, with no significant differences between those who died on dialysis or after withdrawal.Most of the differences between dialysis deaths and deaths after withdrawal are as expected. Greater awareness and anticipation of death, more discussion