End-of-Life Care Preferences and Needs

Abstract

Background and objectives: Despite high mortality rates, surprisingly little research has been done to study chronic kidney disease (CKD) patients' preferences for end-of-life care. The objective of this study was to evaluate end-of-life care preferences of CKD patients to help identify gaps between current end-of-life care practice and patients' preferences and to help prioritize and guide future innovation in end-of-life care policy.Design, setting, participants, & measurements: A total of 584 stage 4 and stage 5 CKD patients were surveyed as they presented to dialysis, transplantation, or predialysis clinics in a Canadian, university-based renal program between January and April 2008.Results: Participants reported relying on the nephrology staff for extensive end-of-life care needs not currently systematically integrated into their renal care, such as pain and symptom management, advance care planning, and psychosocial and spiritual support. Participants also had poor self-reported knowledge of palliative care options and of their illness trajectory. A total of 61% of patients regretted their decision to start dialysis. More patients wanted to die at home (36.1%) or in an inpatient hospice (28.8%) compared with in a hospital (27.4%). Less than 10% of patients reported having had a discussion about end-of-life care issues with their nephrologist in the past 12 months.Conclusions: Current end-of-life clinical practices do not meet the needs of patients with advanced CKD.

Dialysis in the Frail Elderly — A Current Ethical Problem, an Impending Ethical Crisis

“…16 It plays out in daily medical practice through the process of informed consent. Despite the stated emphasis on patient autonomy and its corollary, shared decision making, studies show that HD patients frequently do not feel empowered to make an informed and autonomous choice 17 and feel they have no choice but to start HD treatment. 15,18 According to surveys and interviews of patients with ESRD, many do not know their prognosis and do not recall alternatives being offered, 17,19 despite preferring to receive detailed information.…”

“…Despite the stated emphasis on patient autonomy and its corollary, shared decision making, studies show that HD patients frequently do not feel empowered to make an informed and autonomous choice 17 and feel they have no choice but to start HD treatment. 15,18 According to surveys and interviews of patients with ESRD, many do not know their prognosis and do not recall alternatives being offered, 17,19 despite preferring to receive detailed information. 20 Instead, patients recount being "rushed" 21 and pressured 17 into treatment at a time when they are too sick to process information and without a chance to discuss options with loved ones.…”

“…15,18 According to surveys and interviews of patients with ESRD, many do not know their prognosis and do not recall alternatives being offered, 17,19 despite preferring to receive detailed information. 20 Instead, patients recount being "rushed" 21 and pressured 17 into treatment at a time when they are too sick to process information and without a chance to discuss options with loved ones. 21 Many physicians interpret "respect for patient autonomy" as presenting all available treatment options without recommendations and are reluctant to advocate for withholding treatment.…”

“…56 Many older HD patients regret having started HD. 17,19 The symptom burden in the elderly HD patient is heavy and rivals that of cancer, 14 yet palliative care is underutilized, even in patients who withdraw from HD. 57 Death associated with discontinuation of HD has increased from 14 % of patients 65 59 Survival of elderly patients on HD is poor.…”

Are There Alternatives to Hemodialysis for the Elderly Patient With End-Stage Renal Failure?

“…9 Studies have shown that patients with ESRD have limited knowledge of their prognosis and that few have been presented with alternative treatment options. 10,11 In a recent Canadian study, two-thirds of patients with chronic kidney disease (CKD) indicated that they chose HD over supportive care because it was their physician's (52%) or family's (14%) wish, and 61% of these dialysis patients regretted having started HD. 11 These findings are similar to those of a small qualitative study that showed that at 6 months after the start of HD, only 45% of patients found HD acceptable and that the symptom burden was higher at 6 months than at initiation of dialysis treatment.…”