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.

Cancer Caregivers’ Preparedness for Loss and Bereavement Outcomes: Do Preloss Caregiver Attributes Matter?

“…Consistent with other reports (Clark et al, 2011; Hebert, Dang, et al, 2006; Nielsen et al, 2016; Tabler et al, 2015), we found a significant proportion of bereaved spouses/partners reported they were not adequately prepared emotionally, and to a lesser extent, in a practical way for their loss, even with an apparent period of forewarning. Lower levels of perceived preparedness were common among caregivers who were more anxious and depressed, less competent in daily living tasks, and who reported lower financial adequacy.…”

“…Having a forewarning period (the time between diagnosis of a life-limiting illness and death) does not necessarily mean that caregivers will prepare for the consequences (Clark, Brethwaite, & Gnesdiloff, 2011; Hebert, Dang, & Schulz, 2006). Indeed, past studies have reported that many bereaved caregivers reported being unprepared for the death and its aftermath (Caserta, Utz, & Lund, 2013; Clark et al, 2011; Hebert, Dang, et al, 2006; Nielsen et al, 2016; Tabler et al, 2015). …”

Communication of emotion in home hospice cancer care: Implications for spouse caregiver depression into bereavement

“…In recognition of the high level of burden placed on caregivers and the emotional difficulty associated with bereavement, the hospice team's mission is to evaluate and address both patient and family distress, and all hospice agencies offer some form of bereavement support. However, the support provided to family caregivers is often in direct response to caregivers' expression of emotions related to the loss of their family member and may often be insufficient to counter the psychological distress, including depression, many caregivers face . Providers' response to caregivers' negative emotions of fear, sadness, and grief is recognized as a critical support process for guiding family caregivers through the process of loss and hopefully onto bereavement adjustment .…”

A forbidden topic at the end of life: “What about you after I'm gone?”

“…Spousal caregivers have often put their loved ones first and placed their lives on hold, often resulting in negative health consequences. Avoidance of discussions about these processes has been described as “missed opportunities” for hospice staff to address family‐oriented goals, including the future after a patient's death . The grieving process can often blind caregiving partners to their own needs, leaving them vulnerable to a lack of self‐care, closure, and preparation for life after the death of their spouse.…”