End of Life Care and Alzheimer’s
Hospice or end of life care for terminally ill patients with cancer has grown markedly during the past two decades and has become a significant part of the American health care system. Since its origins in the early 1970s, hospice and end of life care has been relatively slow in broadening its mission and expertise beyond cancer, but today about 40 percent of hospice patients die of something other than cancer; a significant and growing number are in the end stages of congestive heart failure, chronic obstructive pulmonary disease, AIDs, amyotrophic lateral sclerosis, or some other chronic debilitating illness. Among those conditions for which care would be a blessing for many patients and families, however, Alzheimer disease (AD) stands out as a vast domain of unmet palliative care need. It is true that end of life care is largely home based, but it can also be provided in nursing homes and other long-term care facilities, and that is where the vast majority of AD patients reside during the end stage of their disease. This type of homecare is an approach that forgoes life-extending treatment, which is often futile and inhumane in cases of end-stage AD.
End of Life Care and Alzheimer’s Statistics
End of life care is a holistic, family-centered approach to care, which is exactly what is called for when the dying patient has already lost much of himself or herself (memory, cognitive ability, communication, a sense of self ) and families have typically already undergone a lengthy ordeal of grief and loss. Seemingly tailor-made for AD, why then is end of life care so rare for those dying with dementia?
For the fact is that hospice is not widely recognized and not very often used by Alzheimer families. AD was listed on the death certificates of only 23,000 of the 2.5 million people who died last year. But in fact many more than that , maybe as many as 100,000, actually died with Alzheimer’s
No one knows for sure how many AD patients are enrolled inprograms each year, but a good estimate is that about 7 percent of the nation’s hospice or end of life care patients are individuals with dementia. (It is not known how many of those have a primary diagnosis of AD and how many are patients whose dementia is secondary to some other terminal condition such as cancer.) The sad fact is that otherwise medically robust and
“healthy” AD patients fall between the cracks of our health care system near the end of their lives
End of Life Care and Family Decisions
As Alzheimer’s patients are dying, uninterested in eating and unable to swallow, largely unresponsive to their surroundings and barely conscious, AD patients are once more the hot potato that no one in the health care system really wants to touch. Nursing homes do what they can, but they are not always attuned to the palliative care and end of life care needs of the dying, and they have virtually nothing to offer families who are deeply in need of healing. Is this really a problem? Perhaps the lack of AD patients going into hospice or end of life care programs reflects the informed choices and decisions of Alzheimer’s families. It is up to the doctors that should be educating these families about the support and assistance that a hospice or end of life care agency can provide.