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End Stage Dementia: A Terminal Disease Needing Palliative Care

There is an important article in the current issue of the New England Journal of Medicine authored by Dr. Susan Mitchell, a Geriatrician at Harvard Medical School and Hebrew Senior Life. The article has important implications for how we approach and treat advanced dementia in the nursing home and hopefully will spur providers to provide care that reduces and avoids suffering and improves the quality of life of their patients.

The context and importance of the Mitchell study is wonderfully illustrated in the accompanying editorial from Dr. Greg Sachs of Indiana University. Dr. Sach's tells the poignant story of his Grandmother's decline from dementia, who he notes "had little in the way of comfort or company towards the end." He notes, "now some 30 years after my grandmother's death, end-of-life care for dementia does not look all that different from the treatment she received."

Dr. Mitchell followed 323 patients with severe dementia in various Boston nursing homes. Generally, these patients could not recognize family members, were highly dependent, and had an average MMSE score of 6. These findings apply to very advanced dementia, which is very common in nursing homes. The key points of the study are as follows:

---Advanced dementia is a terminal diagnosis. 55% of patients died over 18 months
---Pneumonia, febrile episodes, and eating disorders often precede death. For example, 6 month mortality after pneumonia in these patients approached 50%.
---The symptom burden was high, especially as the end of life approached. For example, 46% had dyspnea, and 39% had pain in the last 18 months. (These were almost certainly underestimates as they are based on provider reports).
---Potentially burdensome treatments (hospitalization, ER visits, IV therapy, or tube feeding) in the last 3 months were very common--41% had at least one of these
----When family members understood that the prognosis was poor and understood the types of complications that could occur, the use of burdensome treatments decreased dramatically.
---Hospice was underutilized. Only 30% of those who died were referred, and about a quarter of these a week or less before death.

Hopefully, recognizing that end stage dementia is a terminal condition will result in improved care---care focused on the quality of life of patients and the needs of their families. Mitchell's findings suggest that communication with families is often poor---It is likely that many families would choose to avoid burdensome hospitalizations and "treatments" such as tube feeding if they understood the burdens and marginal potential for benefit. Even when such therapies are continued, palliative care should generally be offered simultaneously. The difficulty estimating prognosis has often prevented hospice referral in patients with dementia. This study helps by showing that pneumonia seems to signal an average 6 month survival in advanced dementia.

Unfortunately, some aspects of Medicare hospice policy in practice can have the effect of obstructing good care for patients with advanced dementia. This includes (1) the difficulty obtaining hospice when the family wants both palliative care and traditional disease focused care and (2) the limitation of hospice to patients with a six month prognosis---Mitchell's findings clearly show patients need palliative care long before the final six months. The availability of hospice does not relieve nursing homes of the responsibility for providing effective palliative care.


Whereforcare said…
I think that invariably families are not informed well enough about the physical as well as the mental deterioration that Alzheimers is likely to have on their relative. It is abolsutely correct that care & treamtment in many areas has not moved on in the last 20 years. However, there are many care facilities out their who are using the therapeutic route throughout the Alzheimers journey.
Dan Matlock said…
Thanks for this nice summary.

When I was working for a non-profit hospice, we were struggling with many claims denials of these dementia/FTT patients because they were living too long and weren't 'declining.' Articles like this will definitely help strengthen the case that this population needs good palliative care.

Short of changing the hospice benefit, we really need a pre-hospice program for these demented patients who will likely live longer than 6 months but whose families no longer want the revolving door of the hospital. Caregiver support, custodial care, respite (for patients at home) etc.
ken covinsky said…
There is an excellent discussion of Dr. Mitchell's article and Dr. Sach's editorial in the New York Times by Tara Parker-Pope. (

It includes a nice quote from Dr. Sach's that makes the case for palliative care, and reminds me how important it is to deal with the common myth that palliative care is less "aggressive":

“We’re not talking about aggressive care versus no care,” he said. “Palliative care is aggressive and attentive and focused on symptom management and support of the patient and family. It’s not any less excellent care.”

Also, be sure to check out Parker-Pope's blog:


There are many moving posts from family members who are on the front lines caring for loved ones with advanced dementia. We ought to listen carefully to what they have to say.
Lynn O'Neill said…
Like Ken, I appreciated the NY Times coverage of the Mitchell article, especially the comments of Dr. Sachs. From the Well blog attached to the column, one of the bloggers posted a link to an article from the journal, Health Affairs from 2005.

This article is written by a geriatrician and medical director of a skilled nursing unit. I found it to be a complete and full description of the progression of medical "care" received by patients with advanced dementia. Of course, as a palliative care physician, I do not appreciate the end of the article where the author suggests that he might use morphine to shorten his father's life in the end (rather than to treat his pain), but this is a relatively minor point in an otherwise excellent piece. It's long, but very worth the read.
Barbara said…
Thank you Ken for your comments. I think the biggest hurdle in palliative care is the common thought that this is primarily end of life discussions. I would like to see the emphasis put on managing chronic conditions from their onset and working through them until the end of life. This provides for better understanding of the disease process and its trajectory. I find this helpful especially with the dementia patients.
Anonymous said…
As a registered nurse, I find that palliative care medicine is one of the most intimate, most caring and beautiful forms of medicine. It is extremely under utilized and it is a shame. There needs to be greater expansion of these programs in hospitals and communities and a emphasis made on educating families about their options.

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