"Should I Stay or Should I Go Now…?" Respite Care for Family Caregivers in Home-Based Palliative Care

The desire to die at home is widespread, well-researched, and well-described. In order to fulfill this wish, the help of others is needed, primarily relatives. If they decide to provide home care, they simultaneously take on physical, psychological, and social burdens, often requiring professional support. 

In Tyrol, western Austria, "Integrated Palliative Care" (IPC) was launched in 2009 to provide this support. In 2020, this care model was evaluated for the first time [1]. This study explored the perspectives of family caregivers and found predominantly positive feedback regarding professional care. However, one topic area stood out due to predominantly negative narratives: respite care for family caregivers. 

Family caregivers reported that professional helpers asked them to take a break from caring for the dying person and do something for themselves. The narratives make it clear that this was neither important nor right for them, given the limited time they had with the dying person. 

“I felt well looked after in that sense because they always said, yes, I have to look after myself, too. It’s without the.” It’s logical, but it didn’t occur to me that I was missing anything or needed anything or wasn’t getting out”.

"I need a time out. Just now, they told me I need a time out. My sister used to say, 'You need to go out sometime.' I'd say, 'No, now, when you know your time is limited, why would you want me to go out?'". 

Some family caregivers experienced stress from the request to look at themselves and do something for themselves. 

"They all say it, including hospice: 'Look at yourself. You have to look at yourself.' But it's not so easy. This statement, 'You have to do something for yourself,' causes stress. Then, you go for a one-hour walk, but you actually want to be home, and it pulls you back like a rubber band." 

In cases where family caregivers took time off as advised by professional caregivers, they were unable to enjoy it. 

"Yes, but time off wasn't important to me because I thought, 'If it's coming to an end anyway, why should I go for a walk now? You can't enjoy that at all." 

For the family caregivers, the dying person was the center of attention; their own lives moved into the background. Due to the limited remaining time together, they did not experience caregiving as a restriction, and they felt that their own life could wait. Calls to take care of themselves and do things for themselves caused stress and did not seem purposeful, as activities outside the home could not be enjoyed. 

Caring for the dying person was simply a priority during this time. Restricting one's own life came naturally to the family caregivers. 

"Of course, one or the other has to go away sometime. Or what?" But because my husband always wanted to be with me, I said, 'No, I can't.'" 

"Because he wasn't able to do that anymore, and I would have found it mean to pack up and leave him behind. He loved sports and was very active. I just wouldn't have had the heart to do that." 

Professional support can relieve relatives who are caring for a dying person at home in many ways. Respite care for family caregivers is one of these ways. Professional helpers sometimes implicitly assume that relatives desire respite. However, a study on the IPB care model showed that this does not apply to home-based palliative care. In this case, professional support aimed at relieving the burden actually became a burden for the family caregiver, implying a need that did not exist. The suggestion of respite care was perceived as pressure, causing stress. Relatives either resisted being "sent away" or followed this advice against their instincts. Nevertheless, enjoyment of an activity outside the home was never reported. 

For professional help to be effective, it requires an unbiased view of the family caregivers and their specific needs in the home care situation. Options for respite care, such as day hospices or hourly care by volunteers, should be presented as an open-ended offer that includes the option for the family caregiver to refuse. 

Using assessment instruments such as CSNAT [2], or the CARES Framework for Family Caregivers [3], to identify the needs of family caregivers would enable professional helpers to address their needs more individually in the care process.

The author is accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. All procedures performed in this study were in accordance with the ethical standards of the institutional and/or national research committee(s) and with the Helsinki Declaration (as revised in 2013). Written informed consent was obtained from the participants for publication of this essay. A copy of the written consent is available for review by the editorial office of this journal.

1. Rungg C (2020) Integration von Palliative Care in die ambulante Grundversorgung: Das Modell „Integrierte Palliativbetreuung in Tirol“ aus Sicht der pflegenden Angehöri Innsbruck.
2. Aoun SM, Grande G, Howting D, Deas K, Toye C, et al. (2015) The impact of the Carer Support Needs Assessment Tool (CSNAT) in community palliative care using a stepped wedge cluster trial. PloS One 10: 0123012.
3. Alam S, Hannon B, Zimmermann C (2020) Palliative Care for Family Caregivers. J Clin Oncol 38: 926-936.