Date of Award

Spring 5-16-2016

Degree Type

Dissertation

Degree Name

Doctor of Social Work (DSW)

Department

Counseling and Human Services

First Advisor

Zvi D. Gellis, Ph.D

Second Advisor

Tracy A. Schroepfer, PhD

Abstract

The Desire for Hastened Death in Home Hospice Care

Introduction: The desire for hastened death describes the desire of a terminally ill patient to die sooner than anticipated through disease progression. There is growing awareness that this phenomenon is not unusual among individuals facing the end of life. Though research on this topic is expanding, the majority of studies focus on inpatient populations, with limited investigation into the challenges specific to the home hospice experience.

Significance: Annually, forty percent of deaths in the United States represent hospice patients. Hospice social workers are responsible for addressing the mental health needs of their patients. There are few practice guidelines or concrete frameworks for social work assessment and intervention when a patient expresses the “desire to hasten death.” Understanding the circumstances that influence “hastened death” in home hospice can provide a foundation for future development of social work practice guidelines and interventions to improve services and better support the complex needs of patients who choose to die at home.

Objective: This study aimed to enhance understanding about what motivates one’s “desire for hastened death” in the unique context of the home hospice setting. This research used in-depth interviews to elicit patient perspectives and regarding factors that have contributed to contemplating hastened death.

Methodology: This study consisted of cross-sectional, semi-structured interviews with home hospice patients. Potential subjects were recruited through a New York City hospice agency. Hospice social workers provided referrals for this study.

Results: Fifty-five referrals were made for this study. Of those, twenty-seven patients did not meet eligibility criteria, twenty-seven patients were lost to follow up, and one patient volunteered to be interviewed.

Discussion: The interview indicated that this patient had contemplated the idea of hastened death, and was aware of the general discussion about “right to die” legislation. The respondent indicated that she was fearful of having future symptom issues, and being home alone and unable to access help when these symptom needs arose. She also spoke about the challenge of navigating her relationship with her daughter as her daughter took on more responsibility as caregiver. Given that the scope of this study was limited to its one respondent, results are not generalizable. However, this patient’s experience reinforces the impact of many of the factors discussed in the current literature.

Practice Guidelines: This study presents a review of current practice guidelines and identifies areas of assessment and intervention that would be most useful for clinicians in home hospice care. Given the multifactorial natural of the “desire for hastened death,” social work assessment should consider a “biopsychosocial-spiritual” approach. Recommended therapeutic interventions include aspects of cognitive behavioral therapy and mindfulness practice, as well as newer therapies developed from research on the “desire for hastened death.”

Implications for Social Work Practice: Social workers need more focused training and education about the “desire for hastened death.” It is important that they understand both the etiology of “desire to die” statements, and how to assess and intervene appropriately in order to understand and support their home hospice patients.

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