If a person could choose, given the time factor of a chronic illness, where would they choose to die? Many might choose “home,” but is that realistic or the best choice?
Basic home care for any chronic disease is complicated, and may push the limits of families trying to provide quality care. At the end of life, hospice care at home presents even more challenges for families: emotional, practical and financial.
Alzheimer’s Disease (AD) was the 7th leading US cause of death in 2020, with 134,242 deaths, or 367 deaths per day. The top three were heart diseases (696,962), cancer (602,350) and COVID-19 (350,831). [National Center for Heath Statistics, Dec 2021.]
Recently, a news article and several medical articles bring focus to this home care dilemma, especially in AD. Hospice is usually defined by Medicare as the terminal six months of a person’s life, and some costs are covered for enrollees. Medicare is an insurer after all. Each state may or may not also provide some coverage.
One family’s dementia / home hospice experience in rural Iowa, with problematic Medicare issues, was detailed in a recent newspaper article. [WaPo Mar 26, 2022]
The story illustrates that the time line of “end of life” in dementia is individualistic, which makes care planning a bit tricky : “Defining end of life in dementia is complex due to the potentially long and unpredictable trajectory of dementia…Families did not consider dementia to be a terminal condition…” [Palliative Med, 2021].
One palliative care specialist’s approach, discussing some of these issues, was published recently. He discusses communication issues, caregiver burdens, and “deprescribing” some dementia drugs which may no longer be useful. [“Primary Palliative Care in Dementia” Neurotherapeutics Jan 2022].
Palliative care in cancer seems a bit different, and may start even while active chemotherapy is given. That approach can scare patients and families. One viewpoint: “Palliative Care is the umbrella, not the rain…” [JAMA Oncology Mar 2022].
In a Perspective piece, a group cited data that across diagnoses, more Americans are dying at home than in previous decades They discuss their concerns about the quality of home hospice care, while detailing financial and other barriers to institutional palliative / hospice care. [NEJM, Mar 2022].
They imply that institutions might have more resources to manage symptoms better than home caregivers. They do suggest policy changes, including improvements for home care, but conclude that for some, hospice facilities “may be the best place for a good death.”
Earlier this year, there was a review of caregivers’ ideas about “a good death” [SocSciMed Jan 2022]. There was also a systematic review of home hospice that was descriptive [BMC Geri Jan 2022].
Just to confound the financial and care quality picture, equity / for-profit players are evidently entering the hospice care arena [JAMA Health Forum 2021]. The JAMA link may not work, so:
If the Person Living With Dementia can make their wishes known, through the formality of advanced care planning, or informally, in conversations with loved ones, that guidance can make a huge difference when home caregiving limits are pushed.
It starts with a difficult conversation. Quality home hospice care can be and is given every day, but it’s not feasible or practical for everyone; even then, it would be important for a CareGivingOldGuy to have contingency plans…
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