Facilitated advance care planning in end stage renal disease positively enhanced patients’ hope
Q What is the influence of advance care planning on hope in patients with end stage renal disease?
Outpatient renal programme of a university hospital in Edmonton, Alberta, Canada.
19 patients 44–88 years of age (mean age 64 y, 58% women) with end stage renal disease. 14 patients were expected to require dialysis within the next 12 months, and 5 patients were currently undergoing dialysis.
Patients participated in personal, open ended interviews lasting 60–90 minutes. The interviewer used guiding questions that had been developed in 2 preliminary focus groups to explore patients’ views on prognosis, end of life care, and hope. Interviews were taped, and the transcribed text was coded into synthesised themes using inductive analysis to create an account of hope in the context of advance care planning.
Patients’ hopes were shaped by their values and past experiences, reflected what was important to them, and mainly focused on their daily lives. These hopes took the form of desires to preserve personal relationships with family and friends, minimise financial and emotional burdens, and maintain control. Hope was integral to advance care planning and provided a focus for end of life discussions.
Patients’ engagement with health professionals, family, and friends was important in sustaining hope. Patients looked to their healthcare providers for information, which they felt was vital to their ability to maintain hope. Information helped them to imagine possibilities in the future that were consistent with their values, which in turn gave them hope. They expressed a desire for information earlier in their illness, with specific information about their prognosis in order to preserve their concept of self. Furthermore, a strong relationship with their healthcare providers and the provision of information helped patients understand both their disease and the healthcare system, which gave them greater control over their lives. Staying connected with family members, friends, and work colleagues and continuing to contribute to community and family were also mentioned as important to sustaining hope.
A barrier to maintaining hope was the tendency to rely on health professionals to initiate discussions on end of life. Patients expected their physicians to convey necessary information at the appropriate time. Many patients indicated that they would suppress their questions about end of life based on cues they picked up from their physicians. Another threat to sustaining hope was the day to day focus on care of patients with end stage renal disease. Diet, medications, test results, and comorbid conditions were perceived to take precedence in patients’ interactions with health professionals, limiting their vision of their future. The day to day focus on disease management interfered with patients’ opportunities to discuss advance care planning, prompting fear of the future and diminishing hope.
In patients with end stage renal disease, facilitated advance care planning positively enhanced hope. Hope was sustained by information provided by health professionals; relationships with health professionals, family, and friends; and a role in the wider community. Reliance on health professionals to initiate discussions on end of life and a focus on day to day disease management were barriers to sustaining hope.
- Rebecca P Winsett, APRN, PhD
- University of Tennessee Health Science Center, Memphis, Tennessee, USA; University of Southern Indiana, Evansville, Indiana, USA
The study by Davison and Simpson is important because it shows how interactions between patients and nurses, physicians, and other renal healthcare professionals can influence patients’ lives beyond day to day disease management. Patients in the study felt that physicians and nurses experienced in the treatment of end stage renal disease were barriers to hope. They perceived that discussion was limited to everyday care issues. Although this was accepted as an important part of care management, it seemed to be at the expense of detailed end of life discussions.
Davison and Simpson report that the potentially disturbing nature of discussing advance care planning was not a major concern to patients. In fact, it was seen as vital in maintaining their ability to hope. Nurses working outside the arena of specialist palliative care may exercise caution in discussing issues perceived as potentially distressing to patients. A further finding of note was that despite patient awareness of the inherent uncertainty associated with healthcare professionals discussing prognosis, this information was still actively sought and helped patients feel empowered.
Beginning end of life care raises difficult, but ultimately necessary, questions and opportunities for debate between patients and professionals. Yet, through necessity, interactions with healthcare professionals tend towards a focus on disease management and day to day care. Davison and Simpson state that although family and friends are important, healthcare professionals can also provide the necessary and important information that patients need for decision making. With the professional role of gatekeeper comes a responsibility for finding time to discuss topics that are important to patients—no matter how uncomfortable it may be for professionals.
For correspondence: Dr S N Davison, Division of Nephrology and Immunology, University of Alberta, Edmonton, Alberta, Canada.
Source of funding: Amgen Canada.