The Quality of Dying and Death in a Residential Hospice.

CONTEXT: Residential hospices may be an optimal compromise between home and hospital settings for end-of-life care, but there has been little systematic research regarding the quality of dying and death in such locations. OBJECTIVES: The objective of this study was to assess the quality of dying and death of patients who received end-of-life care in a residential hospice and its relationship to hospice length of stay (LOS) and prior receipt of palliative care. METHODS: A total of 100 caregivers of patients who died in a residential hospice in downtown Toronto, Canada, were recruited four to six months after patient's death. The quality of dying and death was measured, based on interviews with bereaved caregivers, using the Quality of Dying and Death (QODD) questionnaire. RESULTS: The overall mean QODD score was 68.85 ± 11.62, which is in the intermediate ("neither good nor bad") range (30-70) of the scale. The lowest QODD subscale score was on the Transcendence subscale, which evaluates death-related concerns; this was 59.48 ± 25.37, with ratings in 14.6% of the sample in the "terrible to poor" (0-29) range. QODD scores were higher for patients with hospice LOS of more than one week (72.21 ± 9.64) than for those with a shorter LOS (60.38 ± 11.92) (P < 0.001). CONCLUSION: Overall quality of dying and death was perceived as average to above average, in an urban residential hospice, although death-related distress was present in a substantial minority of patients. The association of better QODD with hospice LOS of more than one week may be due to better clinical status on admission and/or longer duration of time that is needed to achieve optimal outcomes.

Exploring Sensory Experiences and Personalization in an Inpatient Residential Hospice Setting.

Residential hospices are often purpose-built to enhance the experience of patients and families. However, there has been relatively little research on ambient and sensory experiences of patients and families. This study explored the ambient and sensory experience of residents and families in a residential hospice. Hospice users participated in personalizing environments and experiences, adapting and developing rituals, and enjoying the experience (including smells and sounds) of communal spaces and private rooms. Opportunity for developing new rituals, in particular, suggests an environment supportive of sense of control, social support, and positive distractors. The design of an inpatient hospice can offer a platform through which to support the delivery of flexible care practices, providing opportunities for personal expression, shared experiences, and the maintenance or development of rituals.

Motivations, Satisfaction, and Fears of Death and Dying in Residential Hospice Volunteers: A Prospective Longitudinal Study.

RATIONALE: Studies conducted on hospice volunteers' characteristics and experiences have been cross-sectional. We conducted a prospective study to examine changes in the volunteer experience over time in a cohort of volunteers during the first year of a new residential hospice. METHOD: Eighty-two active volunteers completed an online baseline survey, and of these, 39 completed a follow-up survey at 6 months. The survey included measures of motivations to volunteer, satisfaction with role and with the organization, and fear of death and dying. RESULTS: Repeated measures analyses indicated that motivations to volunteer remained stable over time while volunteer satisfaction increased with time. Baseline level of fears of death and dying varied by age, volunteer role, and motivations to volunteer and decreased at 6 months. CONCLUSION: Volunteering in a residential hospice tends to be a satisfying experience that helps to allay fears about death and dying.