End-of-life and palliative care of patients on maintenance hemodialysis treatment: a focus group study

Abstract

BackgroundDespite complex illness trajectories and a high symptom burden, palliative care has been sub-optimal for patients with end-stage kidney disease and hemodialysis treatment who have a high rate of hospitalization and intensive care towards end of life. There is a growing awareness that further development of palliative care is required to meet the needs of these patients and their family members. In this process, it is important to explore healthcare professionals’ views on provision of care. The aim of this study was therefore to describe nurses’ and physicians’ perspectives on end-of-life and palliative care of patients treated with maintenance hemodialysis.MethodsFour focus group interviews were conducted with renal nurses (17) and physicians (5) in Sweden. Qualitative content analysis was used to analyze data.ResultsParticipants were committed to giving the best possible care to their patients, but there were challenges and barriers to providing quality palliative care in nephrology settings. Professionals described palliative care as end-of-life care associated with hemodialysis withdrawal or palliative dialysis, but also identified care needs and possibilities that are in line with an earlier integrated palliative approach. This was perceived as complex from an organizational point of view. Participants identified challenges related to coordination of care and different perspectives on care responsibilities that impacted symptom management and patients’ quality of life. Communication issues relating to the provision of palliative care were revealed where the hemodialysis setting was regarded as an impediment, and personal and professional experiences, beliefs and knowledge were considered of major importance.ConclusionsNurses and physicians identified a need for the improvement of both late and earlier palliative care approaches. The results highlighted a requirement for and possibilities of training, counselling and support of health care professionals in the dialysis context. Further, multi-professional palliative care collaborations should be developed to improve the coordination and organization of end-of-life and palliative care of patients and their family members. A climate allowing conversations about advance care planning throughout the illness trajectory may facilitate the gradual integration of palliative care alongside life-prolonging treatment for improved support of patients and families.

Perceptions of patients with end-stage kidney disease (ESKD) and their informal caregivers on palliative care as a treatment option: a qualitative study

“…Individuals with ESKD, cared for in renal centres where palliative care services are well-established, choose palliative care more often than centres without palliative care services [2,16]. It has been reported that individuals with ESKD would prefer to be given adequate information about the condition and their treatment options, including palliative care, at an earlier stage of the disease [17].…”

Perceptions of patients with end-stage kidney disease (ESKD) and their informal caregivers on palliative care as a treatment option: a qualitative study

“…Palliative care for ESKD has been de ned as "a transition from a conventional disease-oriented focus on dialysis as a rehabilitative treatment to an approach prioritizing comfort and alignment with preferences and goals of care to improve quality of life and reduce symptom burden" (1,2). It comprises interventions that focus on slowing the deterioration of kidney function, minimising the risk of adverse events, shared decision-making, active symptom management, detailed communication, including advance care planning, psychological, social and family support, and cultural and spiritual care, but does not include RRT (3)(4)(5).…”

“…This is, especially, more profound in lowerand middle-income countries (LMICs) where nancial, geographical and infrastructural challenges affect the provision of e cient renal services (18)(19)(20)(21)(22). Inadequate information provision and delayed initiation of discussions on palliative care also remain key barriers to its utilisation as a treatment option for ESKD (2,17,23,24). Informal caregivers of individuals with ESKD, mainly relatives and friends, may also discourage clinicians' efforts at providing open and honest information about palliative care services (25).…”

Perceptions of patients with end-stage kidney disease (ESKD) and their informal caregivers on palliative care as a treatment option: a qualitative study

“…Palliative care for ESKD has been defined as "a transition from a conventional disease-oriented focus on dialysis as rehabilitative treatment to an approach prioritizing comfort and alignment with preferences and goals of care for to improve quality of life and reduce symptom burden" (1,2). This is increasingly becoming an accepted treatment choice and is highly recommended for individuals in whom renal replacement therapy (RRT) may offer little or no significant difference in terms of survival or quality of life (3)(4)(5)(6)(7)(8)(9)(10).…”

“…A significant number of individuals with ESKD seeking care from renal centres where palliative care services are well-established and discussed choose palliative care (2,14). It has been reported that individuals with ESKD would prefer to be given adequate information about the condition and their treatment options, including palliative care, at an earlier stage of the disease (15).…”