Patient Attitudes and Psychological Considerations in Dialysis Discontinuation

Cohen, Lewis M.; Germain, Michael J.; Woods, Anne; Gilman, E. Deborah; McCue, Jack D.

doi:10.1016/s0033-3182(93)71842-3

Cited by 31 publications

(13 citation statements)

References 36 publications

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“…17 – 19 These beliefs may originate from the perception that denial-like coping mechanisms are commonly used to adapt to life on dialysis as most patients seem unaware of possible imminent death. 6 20 Hope is a complex multidimensional construct that provides comfort during life's challenges. Hope limits the range of information that patients take into account, the inferences drawn from the information, and the set of options among which they will choose.…”

Section: Discussionmentioning

confidence: 99%

“…The End Stage Renal Disease Workgroup on End-of-Life Care recommends that dialysis units facilitate advance care planning, yet this is not occurring. 4 5 Patients often do not know that they have the option to withdraw from dialysis, 6 – 8 and relatively few choose a do not resuscitate order,9 despite the extremely poor chance of survival in these patients after cardiopulmonary resuscitation 10. Patients undergoing dialysis typically do not view themselves as terminally ill and falsely assume they can be kept alive indefinitely on dialysis.…”

Section: Introductionmentioning

confidence: 99%

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Hope and advance care planning in patients with end stage renal disease: qualitative interview study

Davison

Simpson

2006

BMJ

283

252

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Objective To understand hope in the context of advance care planning from the perspective of patients with end stage renal disease. Design Qualitative in-depth interview study. Setting Outpatient department of a university affiliated nephrology programme. Participants 19 patients with end stage renal disease purposively selected from the renal insufficiency, haemodialysis, and peritoneal dialysis clinics. Results Patients' hopes were highly individualised and were shaped by personal values. They reflected a preoccupation with their daily lives. Participants identified hope as central to the process of advance care planning in that hope helped them to determine future goals of care and provided insight into the perceived benefits of advance care planning and their willingness to engage in end of life discussions. More information earlier in the course of the illness focusing on the impact on daily life, along with empowerment of the patient and enhancing professional and personal relationships, were key factors in sustaining patients' ability to hope. This helped them to imagine possibilities for a future that were consistent with their values and hopes. The reliance on health professionals to initiate end of life discussions and the daily focus of clinical care were seen as potential barriers to hope. Conclusions Facilitated advance care planning through the provision of timely appropriate information can positively enhance rather than diminish patients' hope. Current practices concerning disclosure of prognosis are ethically and psychologically inadequate in that they do not meet the needs of patients.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Hope and advance care planning in patients with end stage renal disease: qualitative interview study

Davison

Simpson

2006

BMJ

283

252

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“…A trusted, informed loved one speaking for the patient can be extremely helpful in endof-life decision making. 20 Among those who withdraw from dialysis, a special circumstance is notable, that of the cessation of the time-limited, therapeutic trial of an intervention that eventually proves excessively burdensome. While some studies indicate that withholding dialysis from unstable patients is an option more commonly exercised by nephrologists than withdrawal of dialysis, 18 others suggest that a trial of dialysis is increasingly common for patients with multiple nonrenal illnesses.…”

Section: The Role Of End-of-life Planning and Advance Directivesmentioning

confidence: 99%

Palliative Care/Hospice and the Withdrawal of Dialysis

Neely

Roxe

2000

Journal of Palliative Medicine

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While the majority of end-stage renal disease (ESRD) patients on dialysis lead satisfying lives, an increasing number are choosing to withdraw from dialysis before death. A partnership between nephrology and palliative care/hospice healthcare teams would seem likely in the care of ESRD patients, yet this is often not the case. In anticipation of increasing participation by palliative care/hospice teams in the care of such patients, this article reviews the decision-making process of withdrawal and the medical care of the patient who withdraws. While withdrawal can be an acceptable choice from a medical, legal, psychiatric, and ethical point of view, it can nonetheless be complex. Profound decisions are often characterized by the need for time to process, and by ambivalence among patient, family and healthcare providers. In addition to caring for the patient and family, the palliative care/hospice team will want to consider the needs of the referring nephrology team as well. A "uremic death" is characterized as painless; however, other symptoms related to the accumulation of toxins and fluid can be anticipated and managed. Pharmacological intervention of uremic symptoms, as well as the pain attendant to other, nonrenal comorbid disease is accomplished with awareness of the impact of renal failure on the excretion of various drugs and their metabolites.

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“…These support patient preferences while acknowledging the limitations in the evidence. A large number of quantitative studies have looked at physiologic (7-10), social (8,(10)(11)(12)(13)(14), educational (15)(16)(17), and geographic factors (18) that influence the decision to commence and withdraw from dialysis (15)(16)(17)(18)(19)(20)(21)(22). These studies have provided insights into influential factors, but their largely survey-based methods do not further our understanding of why and how different factors operate.…”

Section: Introductionmentioning

confidence: 99%

Patient and Health Care Professional Decision-Making to Commence and Withdraw from Renal Dialysis

Hussain

Flemming

Murtagh

et al. 2015

Clinical Journal of the American Society of Nephrology

119

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Background and objective To ensure that decisions to start and stop dialysis in ESRD are shared, the factors that affect patients and health care professionals in making such decisions must be understood. This systematic review sought to explore how and why different factors mediate the choices about dialysis treatment.Design, setting, participants, & measurements MEDLINE, Embase, CINAHL, and PsychINFO were searched for qualitative studies of factors that affect patients' or health care professionals' decisions to commence or withdraw from dialysis. A thematic synthesis was conducted.Results Of 494 articles screened, 12 studies (conducted from 1985 to 2014) were included. These involved 206 patients (most receiving hemodialysis) and 64 health care professionals (age ranges: patients, 26-93 years; professionals, 26-61 years). For commencing dialysis, patients based their choice on "gut instinct," as well as deliberating over the effect of treatment on quality of life and survival. How individuals coped with decisionmaking was influential: Some tried to take control of the problem of progressive renal failure, whereas others focused on controlling their emotions. Health care professionals weighed biomedical factors and were led by an instinct to prolong life. Both patients and health care professionals described feeling powerless. With regard to dialysis withdrawal, only after prolonged periods on dialysis were the realities of life on dialysis fully appreciated and past choices questioned. By this stage, however, patients were physically dependent on treatment. As was seen with commencing dialysis, individuals coped with treatment withdrawal in a problem-or emotioncontrolling way. Families struggled to differentiate between choosing versus allowing death. Health care teams avoided and queried discussions regarding dialysis withdrawal. Patients, however, missed the dialogue they experienced during predialysis education.Conclusions Decision-making in ESRD is complex and dynamic and evolves over time and toward death. The factors at work are multifaceted and operate differently for patients and health professionals. More training and research on open communication and shared decision-making are needed.

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Patient Attitudes and Psychological Considerations in Dialysis Discontinuation

Cited by 31 publications

References 36 publications

Hope and advance care planning in patients with end stage renal disease: qualitative interview study

Hope and advance care planning in patients with end stage renal disease: qualitative interview study

Palliative Care/Hospice and the Withdrawal of Dialysis

Patient and Health Care Professional Decision-Making to Commence and Withdraw from Renal Dialysis

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