Christine J. McPherson

After-Death Interviews with Surrogates/Bereaved Family Members: Some Issues of Validity

After-death interviews with bereaved respondents are an important tool in the repertoire of researchers evaluating the quality of end-of-life care or investigating the experiences of people at the end of life. Despite the importance of after-death interviews to our understanding of the last months of life, the validity of the information gathered has received little attention. In this article, we review some of the available information, drawing on evidence from cognitive psychology as well as from palliative care studies. Findings from cognitive psychology indicate that memory is a dynamic process, influenced by emotion state and the individuals perspective at the time of the event and at recall. Further research is therefore needed to understand better the circumstances, types of information and research questions for which bereaved relatives are valid surrogates for people who have died.

Feeling like a burden to others: a systematic review focusing on the end of life.

Research into the burden of illness has focused predominantly on family caregivers, with little consideration of the other side of the caregiving relationship-care recipients’ perspectives on having become a ‘burden to others’. However, there is now a small but growing body of evidence to suggest that worry about creating burden to others is a common and troubling concern for people who are nearing the end of their lives. This concern is referred to as ‘self-perceived burden’. The present study provides a systematic review of the literature, addressing self-perceived burden at the end of life. Using standard methods, literature was searched for relevant studies in palliative care and related fields. The review revealed that self-perceived burden is reported as a significant problem by 19- 65% of terminally ill patients. It is correlated with loss of dignity, suffering, and a ‘bad death’. Self-perceived burden has also been identified as a relevant factor in death-hastening acts among patients with life-threatening illness, as well as in clinical decisions, such as the choice of place of care at the end of life, advance directives, and acceptance of treatment. Given the unique challenges faced by patients with advanced disease and their families, there is a need for further investigation into this under-researched area.

A Burden to Others: A Common Source of Distress for the Terminally Ill

Recent research into the desire for death among people with terminal illness has begun to recognize the importance of “feeling oneself a burden to others” as a factor in suicidal behaviour. In this study, 69 patients with advanced cancer underwent semi‐structured interviews. The sense of self‐perceived burden was found to be a common experience, reported by 39.1% of participants as a minimal or mild concern and by 38% as a moderate to extreme concern. The sense of burden showed a low correlation with physical symptoms (r  =  0.02–0.24) and higher correlations with psychological problems (r  =  0.35–0.39) and existential issues (r  =  0.45–0.49). Comparisons of participants with high or low levels of self‐perceived burden showed the importance of this factor for overall quality of life. In summary, self‐perceived burden is an important but underestimated dimension of social cognition in the medically ill.

Desire for euthanasia or physician-assisted suicide in palliative cancer care

OBJECTIVE To investigate the attitudes of terminally ill individuals toward the legalization of euthanasia or physician-assisted suicide (PAS) and to identify those who would personally desire such a death. DESIGN In the Canadian National Palliative Care Survey, semistructured interviews were administered to 379 patients who were receiving palliative care for cancer. Patients who expressed a desire for physician-hastened death were followed prospectively. MAIN OUTCOME MEASURES Attitudes toward the legalization of euthanasia or PAS were determined, as was the personal interest in receiving a hastened death. Demographic and clinical characteristics were also recorded, including a 22-item structured interview of symptoms and concerns. RESULTS There were 238 participants (62.8%) who believed that euthanasia and/or PAS should be legalized, and 151 (39.8%) who would consider making a future request for a physician-hastened death. However, only 22 (5.8%) reported that, if legally permissible, they would initiate such a request right away, in their current situations. This desire for hastened death was associated with lower religiosity (p=.010), reduced functional status (p=.024), a diagnosis of major depression (p<.001), and greater distress on 12 of 22 individual symptoms and concerns (p<.025). In follow-up interviews with 17 participants, 2 (11.8%) showed instability in their expressed desire. CONCLUSION Among patients receiving palliative care for cancer, the desire to receive euthanasia or PAS is associated with religious beliefs; functional status; and physical, social, and psychological symptoms and concerns. Although this desire is sometimes transitory, once firmly established, it can be enduring.

The balance of give and take in caregiver-partner relationships: An examination of self-perceived burden, relationship equity, and quality of life from the perspective of care recipients following stroke.

PURPOSE We examined the sense of being a burden to others or self-perceived burden (SPB) in people with stroke. METHOD A mail survey was completed by 57 former inpatients and their partner caregivers. The care recipient survey included measures of functional status, quality of life, marital satisfaction, equity in the relationship, and psychological distress, as well as SPB using the Self-Perceived Burden Scale (SPBS; Cousineau, McDowell, Hotz, & Hébert, 2003). The caregiver survey included similar measures in addition to a caregiver burden measure. RESULTS SPB was found to be a prevalent and distressing concern. SPBS scores correlated with measures of functional status and mood; however, the correlations were highest for measures of family roles and work/productivity. Using equity theory as a basis to examine the SPB construct, care recipients who perceived themselves as overbenefiting from the relationship had significantly higher SPB scores than those whose relationship was viewed as equitable or underbenefiting. CONCLUSIONS For some receiving care from a partner after stroke is associated SPB. This sense of burden is related to changes in help-seeking behavior, quality of life, and distress.

Exploring the Experiences of Parent Caregivers of Adult Children With Schizophrenia: A Systematic Review

Abstract This is a qualitative evidence synthesis on the experiences of parents caring for their adult child with schizophrenia. The Joanna Briggs Methodology for systematic reviews guided the study and standard systematic review procedures were followed. Content analysis was used to synthesize findings from the five studies included into the following categories: ‘Resources,’ ‘Loss,’ ‘Psychological Distress,’ ‘Effects on Family,’ and ‘Framing the Experience.’ Findings suggest that parent caregivers struggle to navigate services and need greater support to protect their mental and physical health. From a research perspective, factors influencing parents’ abilities to stay engaged in caregiving warrant further exploration. HighlightsParent caregivers of adult children with schizophrenia experience significant losses related to their child and themselves.Navigating the mental health care system presents significant challenges to parent caregivers.Framing experiences in positive or meaningful ways can be helpful in coping with their care giving role.Parent caregivers ultimately require support in protecting their own mental and physical health.

Experiences of Family Caregivers Making the Transition From Home to the Palliative Care Unit: Weighing the 2 Sides

The purpose of this phenomenological study was to examine family caregivers’ lived experiences of transitioning a patient from home to a palliative care unit. Ten in-depth interviews were analyzed using Colaizzi’s approach. An overarching theme and 8 main themes emerged. The findings reflected family caregivers’ recent experiences in the home, during the transition, and on the palliative care unit. Both positive and negative experiences were revealed. In the home, participants felt honored to provide care but also encountered difficulties, such as accessing resources. Being on the palliative care unit, the provision of care from knowledgeable health care professionals was a relief. However, participants felt like a “guest” because there was little control over the environment. This study raises awareness for health care professionals and family caregivers regarding the process and challenges of providing end-of-life care to patients over the illness trajectory.