Patients' with chronic kidney disease and their relatives' perspectives on advance care planning: A meta‐ethnography

Abstract

Introduction: Advance care planning is a process that supports adults of any age and stage of illness in understanding and sharing their values, life goals, and preferences regarding medical care. Chronic kidney disease is a progressive and lifelong disease.Close relatives often represent patients' most important support. Advance care planning is recommended to be a continuous part of a person's ongoing treatment and is not solely related to end-of-life care. However, no studies have focused on advanced care planning for patients with chronic kidney disease earlier than the onset of a terminal illness.Aim: The aim is to describe experiences of and perspectives on advance care planning among patients with chronic kidney disease and their close relatives. Methods:We conducted a meta-ethnography of studies that used individual, dyad, and focus group interviews. We searched five electronic databases: PubMed, Cinahl, Embase, PsycINFO, and Scopus and reference lists of relevant articles.Results: Seven articles were included. Participants had a need for advance care planning to make shared decisions about treatment and everyday life. The responsibility for initiating advance care planning lay with the healthcare professionals.Differences between advance care planning goals among patients, relatives, and healthcare professionals complicated the advance care planning process. A focus on day-to-day care at the expense of focusing on advance care planning gave an impression of a lack of competencies and interest. For some patients, the involvement of relatives was of significant value; however, it could be associated with burden and pressure. Conclusion:Patients with chronic kidney disease and their families have a need for early advance care planning before dialysis or transplantation is initiated, so as to facilitate shared decision-making related to treatment options and everyday life. It is important that patients, their relatives, and healthcare professionals share the same advance care planning goals, to get sufficient discussions and thus, achieve clarity about prognosis, medical care, and the illness trajectory.

Advance care planning in chronic kidney disease: A national Danish survey of knowledge and attitudes among clinicians

“…Patients with CKD and their families strongly request ACP and wish it to start early-more precisely, before treatment decisions are made [13]. However, some patients and their families experience that the HCPs lack competencies and face barriers in addressing ACP and that they have a lack of interest in the patients' values and goals in their lives with CKD [14,15].…”

“…In addition, patients and family members want ACP to be an ongoing process during their illness trajectory. However, they believe that it is the HCPs who have the responsibility for initiating and guiding the ACP process [13]. Thus, evidence shows that only a few studies have investigated HCPs' perspectives on ACP in relation to CKD.…”

Mapping the empirical evidence on patient involvement interventions in patients with end-stage kidney disease making end-of-life care decisions: a scoping review protocol

“…A preliminary search was conducted of MED-LINE, JBI Evidence Synthesis, the Cochrane Database of Systematic Reviews, and PROSPERO. The search revealed one published scoping review, 18 one scoping review protocol, 19 one systematic review, 20 one systematic realist review, 1 and five protocols of ongoing systematic reviews [21][22][23][24][25] with a similar topic to this scoping review. However, these studies differ from the proposed scoping review with regard to design, study population, major outcomes, or other study aspects:…”

“…The protocol by Patel 22 aims to describe barriers and facilitators of ACP strategies and palliative care services for patients with organ failure in general, rather than specifically ESKD. 22 The protocol by Frandsen et al 23 aims to examine ACP in nephrology from the perspective of patients and their relatives. It differs from our review by including only qualitative studies and excluding studies about EoLC in the terminal phase of the illness.…”

“…The protocol by Mckie et al 24 aims to investigate the unmet supportive care needs of patients with kidney disease, focusing on the differences between age groups. Both Frandsen et al 23 and Mckie et al 24 include patients at all stages of kidney disease (stages 1 through 5). The protocol by Ruanta et al 25 aims to examine the experiences of decision-making within all treatment options for patients with ESKD, their caregivers, and health professionals, but not regarding EoLC.…”