Research That Matters (January 17 - 20, 2008)

Purpose and Background: Despite the proliferation of hospice services during the past 20 years and the advantages to holistic medical care, only about 25% of all Americans who died in 2003, died at home and only about half with the assistance of hospice services (NHPCO, 2004; Teno, et al, 2004). Open, honest, and timely discussions of end-of-life care options, including hospice, can lead to increased quality of life for patients and families (Steinhauser, Christakis, Clipp, McNeilly, McIntyre, & Tulsky, 2000). This study was conducted to explore the communication process between patients, caregivers, and health care professionals, including social workers, through which the decision to choose hospice occurred.

Method: This qualitative study, using a phenomenological approach, was the second phase of a larger mixed-methods study. Ten bereaved hospice caregivers of patients over age 60 receiving home hospice services were selected from among the respondents in the first phase (Author, 2006). The participants represented a range of patient and caregiver characteristics such as age, ethnicity, diagnoses, length of hospice service use, and caregiver relationship to patient. The in-depth interviews were conducted between six months to one year post-patient death and were 1 ½ to 2 hours in length. A semi-structured interview guide was used to capture key components in the end-of-life communication process, including discussions caregivers had with health care professionals regarding patients' diagnoses, prognoses, end-of-life care treatment options and eventual referral to hospice.

Results: Based on the data, several key themes emerged regarding communication and information given to caregivers about end-of-life care options: diagnoses/prognoses related information; discussion of end-of-life care treatment; understanding and expectations of hospice, and involvement of health care professionals. Overall, participants noted that most information about end-of-life care came from physicians and social workers. Many also stated however that they did not believe they fully understood what the patient would go through in the dying process or how they as caregivers could respond most effectively with patients. Caregivers in this study also spent a large amount of time in the interviews describing the relationships they had with the care recipients and about their experiences in caregiving.

Conclusions and Implications for Social Work Practice: The study revealed that health care professionals had various levels of involvement in the communication process and transition to hospice care. These caregivers did not believe they were adequately prepared for providing care for the patients prior to enrolling in hospice. They also revealed strengths in the care they provided to the care recipient. Social workers can, and often do, assist physicians and other health care professionals in preparing and educating patients and caregivers about the specific end-of-life care services, including hospice. A collaborative communication process, with social workers serving as liaisons when end of life is near may facilitate decisions to choose hospice and ease the transition to hospice care, thus giving needed support to patients and families and increasing quality of life at these crucial times.