Using the Experiences of Bereaved Caregivers to Inform Patient- and Caregiver-centered Advance Care Planning

Abstract

BACKGROUND: Traditional approaches to advance care planning (ACP) have many limitations; new approaches are being developed with the goal of improving end-of-life care. OBJECTIVE:To understand how the end-of-life care experiences of older patients and their caregivers can inform the development of new approaches to ACP. DESIGN:Qualitative cross-sectional study. PARTICIPANTS:Caregivers of community-dwelling persons age ≥ 60 years who died with advanced cancer, chronic obstructive pulmonary disease, or heart failure during follow-up in a longitudinal study. APPROACH:In-depth interviews were conducted 6 months after the patient's death with 64 caregivers.Interviews began with open-ended questions to encourage the caregiver to tell the story of the patient's experiences at the end of life. Additional questions asked about how decisions were made, patient-caregiver, patient-clinician, and caregiver-clinician communication. MAIN RESULTS:Although the experiences recounted by caregivers were highly individual, several common themes emerged from the interviews. These included the following: 1) the lack of availability of treatment options for certain patients, prompting patients and caregivers to consider broader end-of-life issues, 2) changes in preferences at the very end of an illness, 3) variability in patient and caregiver desire for and readiness to hear information about the patient's illness, and 4) difficulties with patientcaregiver communication. DISCUSSION:The experiences of older patients at the end of life and their caregivers support a form of ACP that includes a broader set of issues than treatment decision-making alone, recognizes the dynamic nature of preferences, and focuses on addressing barriers to patient-caregiver communication.KEY WORDS: end-of-life care; caregivers; advance care planning.

Care and communication between health professionals and patients affected by severe or chronic illness in community care settings: a qualitative study of care at the end of life

“…The recent trend has been to shift the focus of anticipatory planning towards more informal processes of discussion and reflection about goals of care. 3,43,[51][52][53] …”

“…It is evident that preference for home as a place of death decreases as people get older and as the prospect becomes a more pressing reality. 51,59,[66][67][68][69] Evidence from qualitative studies suggests that terminally ill patients may often feel uncertain about their preferences, which are likely to change throughout the course of illness. Such preferences are often not formulated clearly, especially in the face of uncertainty about what will happen throughout the experience of dying.…”

“…Patients are pragmatic, also, about their options and how these depend on the circumstances that materialise. 6,22,43,50,51,[67][68][69][70][71][72][73] Running like a leitmotif throughout the literature is that patients strongly desire not to impose a burden of care on their family members 5,22,69,[73][74][75][76][77][78][79] and it is evident that most people depend on the availability and willingness of informal carers to support their ability to die at home. 69,73,80 As the population ages, increasing numbers of the very old live alone and may not have carers available to help.…”

“…Plans may be subject to rapid change as death draws closer. 22,43,51,67,69,70,72,84,85 The National Survey of Bereaved People (VOICES) of bereaved carers reported that, among the 44% of patients who had expressed a preference, 71% had wished to die at home. However, although the majority had died in hospital, most relatives (82%) subsequently felt that the patient had died in the most appropriate place.…”

“…They prefer to leave, or only become receptive to, the invitation to consider the end of life much later, when they have become gravely ill and are clearly facing death. 6,12,24,43,51,96 Even when quite severely ill, patients may not realise, or wish to be aware, that they are dying. 12,61 The normative commitment to open awareness towards death and dying within palliative care and current EOLC policy is not borne out by research evidence of patient preferences.…”