Enabling family caregivers to have open conversations about advance care planning.

When someone is dealing with a severe illness, they often spend a significant amount of time with their family in their final months. During this period, they may grapple with shared concerns related to the uncertainties of the illness, the person's priorities, and their preferences regarding future care, including what they still desire and what they no longer want. In the May edition of Palliative Medicine Editor's Choice, Aline De Vleminck provides insights into these crucial conversations and how healthcare professionals can offer their support.

People dealing with severe illnesses often engage in informal discussions about advance care planning (ACP) with their family caregivers. Family caregivers, who provide unpaid, personal care to patients, may want to have these conversations but often feel unprepared or uncomfortable. Healthcare professionals can play a vital role in facilitating these discussions. They can help patients and family caregivers talk about ACP, participate in these conversations, or empower family caregivers to lead them.

In a recent article published in Palliative Medicine, researchers explored the extent to which family caregivers of individuals with serious illnesses had ACP conversations with their loved ones in the final three months of life and how healthcare professionals supported these discussions.

The researchers conducted a survey in Flanders, Belgium, involving 3,000 bereaved family caregivers of individuals with serious chronic illnesses who had passed away two to six months before the study began. They identified participants using registers from the three largest health insurers in Flanders, ensuring a diverse sample. In Belgium, people with extensive long-term care needs can apply for a monthly care budget from insurers to help cover non-medical care, and the insurers maintain records of applicants and their registered family caregivers.

Of the 1,539 participants who completed the questionnaire, 1,334 were included in the analysis (family caregivers of someone with at least one serious illness who had contact with them during the final three months of their loved one's life). The findings were as follows:

- Approximately half of the bereaved family caregivers reported having ACP conversations with their loved ones in the last three months of life.

- These conversations were more likely to occur when family caregivers were 55 years of age or younger, had a medical background, or when specialist palliative care services were involved.

- Conversations were less likely when the deceased person had been diagnosed with dementia.

- About 78% of family caregivers received support from a healthcare professional, often their General Practitioner.

- The support most commonly involved healthcare professionals participating in the conversation with the family caregiver and the seriously ill person. This approach can be seen as a collaborative and empowering one, as opposed to simply providing information or guidance on conducting these conversations, which were less frequently reported in the study.

- Notably, previous studies have shown that family caregivers and seriously ill individuals are willing to have these conversations independently, without professional involvement.

However, only 57.4% of family caregivers in the study perceived the support they received as sufficient. This highlights the need for further understanding and research into how family caregivers can be effectively supported in conducting ACP conversations, both with and without the involvement of healthcare professionals, to ensure that individuals with serious illnesses can communicate their wishes for future care to their loved ones.