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Caregivers Suffer When Ill Family Members Promised Home Death Die Elsewhere

November 6th, 2013, 10:30 AM
Roberta Marks
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Family caregivers (FCGs) who make unconditional promises of a home death to a dying relative and then fail to keep that promise are shattered by grief and guilt, a new study emphasizes. Those negative feelings can persist for years, the report finds.

The study was carried out in Canada, where availability of end-of-life care differs according to the geographical province, and professional care is typically delivered in the hospital or in a free-standing hospice, not the home. But grief at not fulfilling a loved-one’s last wishes is a universal constant, and there is no reason to think that Americans would feel differently.

FCGs in this study made their promises in good faith but in ignorance of how much work would be involved in keeping their relative (all the patients in this study had cancer) at home without support. The FCGs did not realize that they would have to manage such issues as medications or incontinence, and worried that they were doing it wrong. At the same time, they were afraid to discuss problems with their health care providers lest their relative be removed from the home.

And if the caregivers did reach out—when the patient’s pain increased, or there were seizures or other frightening signs/symptoms, it was often too late. They were told to deliver the patient to the hospital or to a free-standing hospice—“addressing the concerns at home was not an option.”

And “although death of their family member in hospital or hospice was described as peaceful, most FCGs were devastated by having let their family member down. Even the few FCGs who realized they had reached the limit of their ability to care at home experienced feelings of unbearable guilt, betrayal, and failure,” according to the researchers.

Therefore, health professionals need to learn if a home-death promise has been made and discuss the possibility that home death may not always be possible, depending on how patient needs change over time, the researchers advise.

At the same time, professionals must do their utmost to support the family and the promise.  “As hospice palliative care is increasingly shifted into homes and caregiving responsibilities handed over to familymembers, adequate resources and supports must be in place and accessible when they are needed,” the researchers conclude.

[Full disclosure: the Visiting Nurse Service of New York provides both end-of-life and palliative care in several ways—at home, in nursing homes, in a separate wing of Bellevue Hospital, and in a free-standing hospice residence.]

Reference

Topf L, Robinson CA, Bottorff JL. When a desired home death does not occur: the consequences of broken promises. J Palliat Med 2013;16:875-880.

Discussion

  • It is so sad when care recipients place this burden on loved ones. Caregiver must do the best they can at the time. I’ve seen and assisted family members who are changing their parents adult briefs, wiping their bottoms. For some, they must let go and take care of themselves.

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