Involving and supporting relatives: Insights from the intensive care, euthanasia practice and primary care

When someone falls seriously ill, becomes very frail and/or dies, it often deeply impacts their relatives. Different care contexts may require varied approaches for involvement of and support for relatives. The aims of this thesis are: 1) to provide insight into the involvement of relatives in medical decision-making, as well as relatives’ and physicians’ preferences in this regard; 2) to obtain insight into how to best support relatives during illness of a loved one; and 3) to provide insight into what share of bereaved relatives receive care and their experiences with and needs for care. In part 1 of this thesis multiple studies on the role of relatives in medical decision-making are discussed. A study among 329 relatives of ICU patients (Chapter 2) showed that 54% was at least occasionally asked to be involved in treatment decisions. Preferences regarding involvement varied widely. In addition, the actual level of involvement did not always align with the preferred level, with some relatives wishing a greater or smaller role. Healthcare professionals are encouraged to tailor the decision-making process to relatives' preferences and recognize that these may change during the ICU admission. A mixed-methods study among 746 Dutch physicians (Chapter 3) about relatives’ roles in decisions about euthanasia and physician-assisted suicide (EAS) showed that 80% of physicians wanted to hear relatives’ opinion about the EAS request, but far less (35%) considered these opinions when deciding about whether to grant an EAS request. According to physicians, relatives’ input can help make the EAS process more dignified, mediate conflicts, and provide support. However, physicians explained that while relatives’ opinions may influence the EAS decision-making process, they can never be a reason to grant or refuse a request. Part 2 describes a cohort study among 329 relatives of ICU patients from both pre-COVID-19 and the COVID-19 pandemic about support for relatives (Chapter 4). It showed that during the pandemic support was provided more frequently and via alternative methods, such as video calls. Despite these changes, relatives generally reported positive experiences, particularly when communication occurred at fixed times, covered multiple topics, and included emotional support. Lessons from the COVID-19 situation, like fixed contact schedules, could improve routine ICU support. Part 3 includes three studies on care for bereaved relatives. A mixed-methods study among 90 bereaved relatives of ICU patients (Chapter 5) showed that 44% of them were asked about their well-being shortly after their loved one’s death and about one in four had had a follow-up conversation with ICU staff. During these follow-up conversations the medical course of the admission was reviewed and relatives’ (mental) well-being was discussed. Relatives especially valued follow-up conversations with the physician most involved in the patient’s care. Among relatives who did not have a follow-up conversation, 44% were unaware of this option and 26% did not feel the need for it. A questionnaire study among 127 physicians (Chapter 6) revealed that 77% had had aftercare conversations with relatives following EAS, though clinical specialists initiated these less often than general practitioners (GPs). Topics included the EAS process, relatives’ emotional experiences during the EAS trajectory, and their current well-being. Such conversations rarely resulted in referrals for additional care (6%). Data from 1779 death registration questionnaires from 52 GP practices (Chapter 7) indicated that 86% of GPs provided or planned bereavement care for relatives of their patients. GPs were more likely to offer support after non-sudden deaths, particularly when informal caregivers were involved. Conversely, deaths in palliative care units or hospices were associated with less bereavement care by GPs. GPs, given their relationship with the deceased, seem well-positioned to provide bereavement care even to non-patients.