Perspectives of family members on planning end-of-life care for terminally ill and frail older people.

CONTEXT: Advance care planning (ACP) is the process by which patients, together with their physician and loved ones, establish preferences for future care. Because previous research has shown that relatives play a considerable role in end-of-life care decisions, it is important to understand how family members are involved in this process. OBJECTIVES: To gain understanding of the involvement of family members in ACP for older people near the end of life by exploring their views and experiences concerning this process. METHODS: This was a qualitative research study, done with semistructured interviews. Twenty-one family members were recruited from three geriatric settings in Flanders, Belgium. The data were analyzed using the constant comparative method as proposed by the grounded theory. RESULTS: Family members took different positions in the ACP process depending on how much responsibility the family member wanted to take and to what extent the family member felt the patient expected him/her to play a part. The position of family members on these two dimensions was influenced by several factors, namely acknowledgment of the imminent death, experiences with death and dying, opinion about the benefits of ACP, burden of initiating conversations about death and dying, and trust in health care providers. Furthermore, the role of family members in ACP was embedded in the existing relationship patterns. CONCLUSION: This study provides insight into the different positions of family members in the end-of-life care planning of older patients with a short life expectancy. It is important for health care providers to understand the position of a family member in the ACP of the patient, take into account that family members may experience an active role in ACP as burdensome, and consider existing relationship patterns.

Advance Care Planning in terminally ill and frail older persons.

OBJECTIVE: Advance Care Planning (ACP) - the communication process by which patients establish goals and preferences for future care - is encouraged to improve the quality of end-of-life care. Gaining insight into the views of elderly on ACP was the aim of this study, as most studies concern younger patients. METHODS: We conducted and analysed 38 semi-structured interviews in elderly patients with limited prognosis. RESULTS: The majority of participants were willing to talk about dying. In some elderly, however, non-acceptance of their nearing death made ACP conversations impossible. Most of the participants wanted to plan those issues of end-of-life care related to personal experiences and fears. They were less interested in planning other end-of-life situations being outside of their power of imagination. Other factors determining if patients proceed to ACP were trust in family and/or physician and the need for control. CONCLUSIONS: ACP is considered important by most elderly. However, there is a risk of pseudo-participation in case of non-acceptance of the nearing death or planning end-of-life situations outside the patient's power of imagination. This may result in end-of-life decisions not reflecting the patient's true wishes. PRACTICE IMPLICATIONS: Before engaging in ACP conversations, physicians should explore if the patient accepts dying as a likely outcome. Also the experiences and fears concerning death and dying, trust and the need for control should be assessed.