Hospice, Dementia, and Quality of Life. Now We Know.
In 1983, Medicare first designed the hospice benefit around the needs of people with cancer. Over the years, hospice increasingly served patients with a diversity of diagnoses. However, until recently, there was scant evidence about how home hospice affected quality of life for patients with dementia. In June, Health Affairs published the work of Krista Harrison (University of California San Francisco) and colleagues which examines this question directly.1
Hospice is Very Common in Dementia
While patients with cancer still account for three out of ten hospice patients, nearly half of hospice patients now have dementia. In 15% of hospice cases, dementia is the primary hospice diagnosis.
Home Hospice Correlates with Longer Life for Dementia Patients
One sign that hospice manages symptoms well for patients with dementia is the longevity correlation. A first-of-its-kind study published in the Journal of the American Geriatrics Society observed that patients with dementia live longer in home hospice than in nursing home care. Patients in nursing homes proved 30% more likely to die within six months than patients in home hospice.
Quality of Life / Quality of Death in Hospice
When people have diseases in an advanced state, it’s common to reach a point where doctors say, “All the best treatments have been delivered. Now we wait.” However, this does not mean healthcare is done improving a person’s quality of life. Even in the last months of life, clinicians still influence the lives of their patients in significantly positive ways. On the other hand, surveys tell us that some patients have higher quality of life at the end of life than others – that is to say, “higher quality of death.” A study published in the Archives of Internal Medicine determined the nine factors most influential on caregiver perceptions of quality of death.2
Nine Most Influential Factors on Quality Of Death
- ICU stays in the final week of life (negative effect)
- Dying in the hospital (negative effect)
- Patient worry reported at the start of the study period (negative effect)
- Religious activities (positive effect)
- Differences between hospitals
- Feeding tube in the last week of life (negative)
- Pastoral care as part of medical care (positive)
- Chemotherapy in the last week of life (negative)
- Sense that the doctor sees the patient as a whole person and respects patient wishes
These factors revolve around symptom control at home while suspending taxing medical procedures such as ICU stays, feeding tubes, and chemo. Home hospice facilitates the care associated with a higher quality of death. However, this study, like many before it, is specific to patients with cancer.
Hospice Improves Quality of Life for Patients with Dementia
In a study published in June, Krista Harrison and colleagues examined data from the National Health and Aging Trends Study and from Medicare claims. They focused on caregiver perceptions of care in the decedent’s last month of life. They found that home hospice improved satisfaction with end-of-life care for patients with dementia. For example:
- Families with hospice proved 27% more likely to rate medical care as excellent.
- Families with hospice were 46% more likely to say they received management for feelings of anxiety or sadness.
- Families with hospice were 60% less likely to change the setting of care in the last three days of life.
On the other hand, the study finds no difference in quality of life between hospice patients with dementia and hospice patients without dementia. Interestingly, the results strongly suggest that dementia does not impair hospice’s ability to improve quality of life.
- Harrison KL, Cenzer I, Ankuda CK, Hunt LJ, Aldridge MD. Hospice Improves Care Quality For Older Adults With Dementia In Their Last Month Of Life: Study examines hospice care quality for older adults with dementia in their last month of life. Health Affairs. 2022 Jun 1;41(6):821-30.
- Zhang B, Nilsson ME, Prigerson HG. Factors important to patients’ quality of life at the end of life. Archives of Internal Medicine. 2012 Aug 13;172(15):1133-42.