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

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.

The aim is to describe experiences of and perspectives on advance care planning among patients with chronic kidney disease and their close relatives.

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.

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.

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.