Advance care planning
Murray A. Holtby
The researchers’ stated objective for this qualitative study was “to understand hope in the context of advance care planning (ACP) from the perspective of patients with end stage renal disease (ESRD)” (p. 886). The research is anchored around two unknowns: (a) The nature of the relationships among ACP, sharing information about prognoses, and hope; and (b) Whether or not sustaining hope in patients with ESRD and meeting their end-of-life needs are compatible goals. Canadian researchers Davison and Simpson have opened the door to a vital area of understanding within nephrology research that informs an important aspect of patient-centred renal practice. Davison has co-authored several papers on end-of-life care issues in patients with renal disease.
The researchers used interpretive description and a process of concurrent inductive analysis to explore themes that emerged from 23 interviews from a purposively selected sample of 19 participants (four participants were interviewed twice). The researchers selected participants from three clinics at a university-based nephrology program in Edmonton, Alberta: 14 from a renal insufficiency clinic, who were expected to require dialysis within 12 months; one from a peritoneal dialysis clinic; and four from a hemodialysis clinic. Interview data collected from the five participants on dialysis were also used to challenge the themes emerging from the 14 pre-dialysis participants. The rationale for the challenge and the resultant findings were not made explicit by the researchers in their report, but in a communication subsequent to publication, the corresponding author stated that “We wanted to ensure that themes that emerged pre-dialysis were consistent with those in dialysis patients or if they underwent subtle (or not so subtle) shifts due to changes in disease severity and management” (S.N. Davison, personal communication, June 5, 2007).
Considering that almost 75% of the research sample consisted of participants who were pre-dialysis and, therefore, pre-ESRD, the title of the research report is misleading. The researchers’ rationale for their choice of sample was that “the modern palliative care paradigm suggests that this (the stage of renal insufficiency) is the optimal time to initiate advance care planning” (p. 886). Including the challenge in the method helped to bring the findings more inline with the purported objective of the study, but the findings of this study need to be interpreted with a view to the actual sample employed by the researchers and the manner in which the potentially evolving nature of hope–pre-dialysis through dialysis–was captured and then embedded in the research findings.
The two major findings of this research project link directly to the two unknowns anchoring the research: The researchers found a positive correlation among ACP, sharing information about prognoses and hope, and that sustaining hope in patients with ESRD and meeting their end-of-life needs are indeed compatible goals. Far from destroying hope, say Davison and Simpson, honesty regarding prognosis and early-facilitated ACP are found to be key factors in supporting hope in patients with ESRD. Davison and Simpson suggest that hope is actually the cornerstone of the ACP process: Hope provides a rationale for ACP because hope is the ability to envision a future over which there remains the possibility for the expression of one’s identity.
Davison and Simpson found that health care professionals could not only be instrumental in supporting hope, they could also be instrumental in creating barriers to hope. Participant responses from this study suggest that the tendency of health care professionals to take a day-to-day focus on illness management robs those with ESRD of their futures. Denial of the future is a barrier to hope inasmuch as hope is a future-oriented state of mind. Participants also identified dependence on health care professionals to initiate ACP conversations as another important barrier to hope. Interestingly, even when health care professionals initiate ACP conversations, the researchers found that patients often interpreted conversation cues from health care professionals in ways that caused them to limit or suppress their end-of-life questions.
Davison and Simpson have provided evidence that ACP, frank information about prognosis and hope are positively correlated in the population of patients with advanced renal disease. They also found that providing good end-of-life care is compatible with the maintenance of hope. Davison and Simpson contend that facilitated ACP, starting with more and early information that focuses on how treatment options may affect daily life, is essential to sustaining hope in patients with ESRD. The participants in this study did identify that they expected physicians to initiate end-of-life discussions. Patient expectations, however, may change as health human resource policymakers in Canada encourage clinicians to embrace models of interprofessional collaborative practice. Much of what was learned about ACP and hope in this research falls within the domain of nursing–dealing with the effects of a disease process on daily life is but one example. Canadian nephrology nurses should be prepared to adopt skills in ACP as a core competency considering the unique needs of the nephrology patient population described in this research.
In this study, Davison sought to determine the perspectives of patients with end stage renal disease (ESRD) on the salient elements of advance care planning (ACP) and their preferences regarding how the health care team could best facilitate ACP. Sara Davison is a nephrologist and Assistant Professor, Division of Nephrology and Transplant Immunology, University of Alberta and is Assistant Professor, John Dosseter Health Ethics Centre, University of Alberta. Davison’s program of inter-disciplinary research includes a focus on ACP for patients with kidney disease. Davison also heads the restructuring of end-of-life care for the Northern Alberta Renal Program. Davison–citing American statistics–underscored the importance of this study by reporting that more than 79,812 chronically dialyzed people die annually and that approximately 15% to 25% of these deaths result from a decision to discontinue dialysis. These figures, when seen in the light of research evidence that health professionals are, by and large, continuing to miss the boat when it comes to supporting renal patients in end-of-life decision making, are “a strong argument for shifting the focus away from the traditional informationgiving and document completion model of advance directives and replacing it with a relational, patient-centred process that focuses on the broader goals of care” (p. 1023).
The 24 participants in this study were purposively selected patients from the Northern Alberta Renal Program clinics at the University of Alberta: 14 from the renal insufficiency clinic, and five each from the peritoneal dialysis and hemodialysis clinics. Recorded and transcribed interviews were coded into thematic categories using constant comparative and iterative analyses. Data collected from the interviews with the dialysis patients were used to challenge and further explore the themes arising from data collected in interviews with the renal insufficiency patients. Davison stated that she used an ethnographic approach in this study. The sample and method used in the present study, however, overlap with the sample and method used in the study “Hope and Advance Care Planning in Patients with End Stage Renal Disease: Qualitative Interview Study” (also reviewed in this issue of CANNT), which was neither mentioned nor explained by the author. Except for the net addition of five participants and a new ratio of women to men, the demographics between the studies are identical. One excerpt from a participant interview is repeated between studies. Based on similarities in sample demographics, method, findings, and timing of the two studies, the present study appears to piggyback on the aforementioned study about hope and ACP. The main difference between the two studies appears to be primarily one of focus. The present study may have a methodological advantage over the other in that more dialysis patients–with a balance between hemodialysis and peritoneal dialysis patients–were included in the study. Not surprisingly, there is a great deal of overlap in the reported findings between the two studies: The elements of facilitated ACP that foster hope in patients with ESRD, are, by and large, the same elements deemed by these patients to be salient to discussions about ACP.
The study findings fall into two categories: (a) the elements of a discussion about ACP that determine patient interest in ACP, and (b) the elements of a discussion about ACP that facilitate an effective ACP process. Davison found that the elements of patient buy-in and acknowledgement of patient perception of personal empowerment determined patient interest in ACP. Davison also found these elements to be key for framing ACP discussions and for making a determination of a patient’s ability to participate in ACP discussions. Buy-in is achieved through patient identification of the perceived benefits of ACP. Perception of personal empowerment speaks to a patient’s sense of power to influence received care based on personal preference.
The elements of an ACP discussion that patients in this study reported facilitated effective ACP included more information, earlier initiation of ACP discussions, linking information about prognosis and treatment options to the effect they may have on lifestyle, values, and personal relationships, empathetic listening, the role of the physician in taking responsibility for initiating and guiding ACP, and–for most–the role of family in the decision-making process. Davison stated “these findings identify a precarious tension between patients’ preferences in terms of facilitated ACP and current clinical practice” (p. 1023). This statement brings the findings of the study, in a full circle, back to the author’s initial hypothesis that information-giving and completion of advance directives are inadequate to the larger need among patients with ESRD for a patient-centred, dynamic, and relational process of facilitated ACP.
Canadian renal nurses who, as part of their basic nursing education, have come to appreciate that health and well-being are bio-psycho-social phenomena, should be encouraged by these findings to recognize the important contribution they can make to ACP in renal patients with ESRD as part of the health care team partnership with patient and family. In light of the finding that patients currently perceive physicians to be primarily responsible for initiating and guiding ACP, renal nurses need to better understand and better communicate the role their professional expertise can have in improving the lives and deaths of patients with ESRD through ACP. The intimate and often long-term nature of renal nurse-patient relationships speaks to the critical need of an expanded role for Canadian renal nurses in the ACP process.
Davison, S.N., & Simpson, C. (2006). Hope and advance care planning in patients with end stage renal disease: Qualitative interview study. British Medical Journal, 333, 886-890.
Davison, S.N. (2006). Facilitating advance care planning for patients with endstage renal disease: The patient perspective. Clinical Journal of the American Society of Nephrology, 1, 1023-1028.
Reviewed by Murray A. Holtby RN, BTh, BScN, PhD Student, University of Calgary, Calgary, AB
COPYRIGHT 2007 Canadian Association of Nephrology Nurses & Technologists
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