Advance care planning: A systematic review about experiences of patients with a life-threatening or life-limiting illness

Abstract

Background:Advance care planning is seen as an important strategy to improve end-of-life communication and the quality of life of patients and their relatives. However, the frequency of advance care planning conversations in practice remains low. In-depth understanding of patients’ experiences with advance care planning might provide clues to optimise its value to patients and improve implementation.Aim:To synthesise and describe the research findings on the experiences with advance care planning of patients with a life-threatening or life-limiting illness.Design:A systematic literature review, using an iterative search strategy. A thematic synthesis was conducted and was supported by NVivo 11.Data sources:The search was performed in MEDLINE, Embase, PsycINFO and CINAHL on 7 November 2016.Results:Of the 3555 articles found, 20 were included. We identified three themes in patients’ experiences with advance care planning. ‘Ambivalence’ refers to patients simultaneously experiencing benefits from advance care planning as well as unpleasant feelings. ‘Readiness’ for advance care planning is a necessary prerequisite for taking up its benefits but can also be promoted by the process of advance care planning itself. ‘Openness’ refers to patients’ need to feel comfortable in being open about their preferences for future care towards relevant others.Conclusion:Although participation in advance care planning can be accompanied by unpleasant feelings, many patients reported benefits of advance care planning as well. This suggests a need for advance care planning to be personalised in a form which is both feasible and relevant at moments suitable for the individual patient.

Implementation of the milestones communication approach for patients with limited prognosis: evaluation of intervention fidelity

“…Conversely, ACP is an important strategy to improve end-of-life communication between patients and healthcare providers. Other potential benefits are that ACP allows patients to maintain a sense of control and gives them the opportunity to incorporate personal preferences [28].…”

How Should End-of-Life Advance Care Planning Discussions Be Implemented According to Patients and Informal Carers? A Qualitative Review of Reviews

“…62 Although some research indicated preferences for earlier discussion, other research found that patients may lack readiness to think about ACP and need time to cope with the initial shock of a diagnosis. 68 For COPD and respiratory illnesses, a lack of knowledge among patients about the terminal nature of COPD could present a challenge to identifying when best to begin ACP discussions. 61,65 Some reviews showed that patients and carers recognized that ACP discussions may be recurring events rather than one-off exercises.…”

“…Patients could feel respected and heard through ACP but also disrupted and distressed, and some were reluctant to be open with health care professionals as ACP could expose family tensions. 68 In the context of kidney disease, patients felt generally positive about ACP, but one of the main topics of discussion for this groupedecisions about dialysisewas complex and challenging. 39,64 These patients were vulnerable and fluctuated between wanting survival and wanting death; deciding to discontinue dialysis was difficult as some feared being labeled cowardly or upsetting their families.…”

“…Patients and carers both gained some feelings of protection and relief from ACP but also had concerns about its value given that preferences might change, the future is unpredictable, and decisions made during ACP might not be feasible. 54,66,68 In long-term care settings, carers were more ambivalent than residents about the value of ACP, 46 and sometimes preferred life-saving treatment where residents did not. 50 Family values about death and endof-life care could be particularly important, and carers sometimes overruled ACP decisions based on their perceptions in the moment, which were more influential than the advance wishes and past attitudes of the patient.…”

RADPAC-PD: A tool to support healthcare professionals in timely identifying palliative care needs of people with Parkinson’s disease

“…This is in line with findings from a study by Rietjens et al [34] that found that ACP can be initiated at any stage of a person's life, but that it should be more targeted when the health condition worsens. Other studies also show that ACP should be introduced when the individual person is ready [34,[52][53][54]. Both elements are presented in our set of indicators for initiating ACP.…”