The Wish to Die in Older Adults and Its Relationship to Burden and Depressive Symptoms in Home Care Workers: A Quasi-Experimental Longitudinal Study

Introduction

Older adults may experience a wish to die in the context of deteriorating health, a loss of autonomy, loneliness, or depression. Home care workers may likewise experience burden or symptoms of depression as a result of prolonged contact with this physical and emotional suffering. Training initiatives that can support the well-being of home care workers are therefore important.

Aim

To describe the typical profile of older adults who express a wish to die to their home care worker, and to examine whether a psycho-educational intervention for care workers exploring the end-of-life process and self-care strategies had an impact on the older adult's wish to die and on the care worker's perceived burden and depressive symptoms.

Design

Quasi-experimental, longitudinal study involving non-randomized experimental and control groups and follow-up at 3–6 months post-intervention.

Methods

At the start of the study, all care workers (n = 126) provided sociodemographic information (age, gender) for themselves and the care recipient, and completed the Karnofsky Performance Status scale and the Assessment of the Frequency and Extent of the Desire to Die (AFEDD) interview to provide a baseline measure of the care recipient's functional status and wish to die. They also completed the Beck Depression Inventory (BDI) and Zarit Burden Interview (ZBI) as a measure of their own perceived burden and depressive symptoms. The AFEDD, BDI, and ZBI were completed again by care workers at 3 and 6 months post-intervention.

Results

The typical profile of care recipients was a woman aged 85.5 years who required considerable support and assistance and who had at least occasionally experienced a wish to die, although these thoughts were not always verbalized. Scores on the AFEDD remained relatively stable over the follow-up period in both the control and experimental groups. There was no significant association between the older adult's wish to die and depressive symptoms in the care worker across the study period. However, a positive and significant correlation between a wish to die in the older adult and perceived burden in the care worker was observed at 6 months post-intervention in both the total sample (p = 0.032) and among controls (p = 0.028). By contrast, this significant association was not found for care workers in the experimental group (p = 0.376), suggesting that the psycho-educational intervention may have had a protective effect.

Conclusion

Although further studies are needed to corroborate and extend these findings, the results suggest that psycho-educational interventions aimed at increasing home care workers' understanding of the end-of-life process and which introduce them to self-care strategies may help to reduce their perceived burden when the older person for whom they are caring expresses a wish to die.

Clinical Relevance

Home care workers may find it challenging to care for an older adult who expresses a wish to die. Psycho-educational interventions that enhance care workers' understanding of the end-of-life process and teach them self-care strategies could help to support their well-being and their ability to provide adequate care.