Pre and post-loss needs of people with terminally ill spouses: Recommendations from a qualitative study

A qualitative study examined the unmet needs surrounding both pre-loss and post-loss concerns of 38 people age 46-64 who were involved in sole or joint caregiving for terminal illnesses of their spouses and subsequently witnessed their eventual death. The revealed pre-loss needs focused on the often insensitive way in which the terminal diagnosis was delivered as well as coordination of care with hospice or other providers. Immediate post lost needs included funeral and related arrangements and the speeding up of the grieving process. These findings led to an examination of theories and language used with survivors (e.g., phases, stages, tasks, grief process, etc) to improve care and support for end of life experiences. This study offers insight into vital areas in need of attention by practitioners, the medical community, and the death and grief care industry. Recommendations are given for a more sensitive delivery of bad news, better coordination of care for the dying spouse, and suggestions for moving away from an emphasis on a ‘grief process' in the professional death and grief industry.