Missed Opportunity: Hospice Care and the Family

Abstract

A typical mission statement of hospice services is to provide quality, compassionate care to those with terminal illness and to support families through caregiving and bereavement. This study explored the ways that bereavement needs of caregivers, either pre-or post-death of their spouse/ partner, were addressed using qualitative retrospective phone interviews with 19 caregivers whose spouse/partner was enrolled in hospice care for cancer. Overall, participants expressed high satisfaction with hospice care, most often noting a high satisfaction with the quality of care provided to their spouse/partner. During the pre-death phase, caregivers recalled being so focused on their spouse/partner's needs that they rarely spoke with hospice staff about their own personal needs and emotions. Participants said that bereavement counseling occurred primarily after the death of the spouse/partner, in the form of generic pamphlets or phone calls from someone they had not met during prior interactions with hospice staff. These findings suggest that caregivers' high satisfaction with hospice may be more associated with the quality of care provided to the spouse/partner than with bereavement support they received. Our findings illustrated a potential missed opportunity for hospices to address the family-oriented goals that are commonly put forward in hospice mission statements. Keywordscaregivers; family caregivers; bereavement; hospice; grief/loss A serious chronic illness affects the quality of life of the patient, as well as the wellbeing and quality of life of family members. For example, those close to someone with a terminal cancer diagnosis often take on significant caregiving tasks, face other role changes as the dying person is not as able to engage in the same level of daily life activities, and express many feelings of uncertainty and grief as the patient experiences end-of-life (Badr et al., 2010). Research has indicated the importance of family or couple-based interventions across the entire trajectory of the chronic illnesses, including and especially during the end-of-life