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End Stage Dementia: What to do with treatment?

Hospice programs provide much needed care and support for patients, families and caregivers for people with end-stage dementias. Thanks to the evolution of medical therapeutics, some of theses patients have been managed with cholinesterase inhibitors or NMDA receptor antagonists prior to their ultimate decline and the advent of hospice care. Physicians, families and hospice programs are then faced with a dilemma: should these medications continue?

A recent Brief Report in the Journal of Palliative Medicine (Shega, et al J Palliat Med 2009) provides perspective on this issue by surveying 152 hospice medical directors on practice patterns and clinical experiences. Seventy three percent and 33% of respondents reported more than 20% of their patients are on cholinesterase inhibitors or NMDA antagonists, respectively. Eighty percent of responding physicians would recommend discontinuation of the agents as part of the hospice plan of care. At the same time, 72% report that families had difficulty with the recommendation to stop therapy, with only around 50% actually proceeding to discontinue the treatment. Among responding physicians, 20-30% believed that these medications provided sufficient cognitive or functional benefit for either patient or caregivers, such that they would be less likely to recommend discontinuation. Based on these findings, the authors conclude with a recommendation for prospective studies to evaluate the clinical impact of discontinuation for patients and caregivers.

As a hospice medical director, I wholeheartedly support this call for research on this issue. I have based my approach to this problem on my experience and periodic reviews of the literature. From an experience perspective, it is essential to remember that to qualify for terminal illness Medicare guidelines, a dementia patient must be incontinent, nonambulatory, and no longer able to communicate meaningfully (FAST Stage 7). Under these circumstances, goals of care are typically focus solely on comfort, with potential for meaningful cognitive, behavioral, or functional goals having sadly, yet inevitably slipped away. Seldom does one of these medications contribute to comfort and quality of life. Issues of “pill-burden,” side-effects, and cost are substantial. Rare have been the cases of actual difficulty upon medication discontinuation, although family distress with the process is indeed a very real concern. This understandable distress is addressed as a grief and loss issue by my hospice team. Our local geriatric psychiatrist shares a similar view.
My reading of the relevant literature is that it is sorely lacking in persuasive evidence of benefit of these medications in the end-stage situation. Two widely quoted articles evaluated the effects of cholinesterase inhibitors in patients with “severe Alzheimer’s disease.” (Burns, et al Lancet Neurology 2009; and Black et al Neurology 2007). Notably, the Burns study excluded non-ambulatory patients and the Black study included 176 patients, only 11% of whom were FAST Stage 7. Both studies concluded that the drugs had benefits in certain parameters. It is my professional opinion that, because of the patient populations evaluated, these studies are not relevant to the truly end-stage, hospice appropriate patient.

The Clinical Guidelines published in Annals of Internal Medicine (Raina, etal Ann Intern Med 2008.) say nothing about end-stage patients. Their conclusion about treatment in general is half-hearted at best: “treatment… can result in statistically significant but clinically marginal improvement….” The resulting Practice Guideline (Qaseem, et al Ann Int Med 2003.) recommends individualizing assessment and treatment decisions and calling urgently for further research. The related editorial emphasizes the issues of clearly defining therapeutic goals and “when, if ever, to discontinue….” The guideline panel was unable to address the issue for lack of evidence, wisely pointing out that, “if slowing progression is no longer a goal, there is no reason to continue.”

I offer this blog-post in the spirit of inviting discussion, sharing of experience, and to add my voice to the call for research on behalf of so many patients and families. How do you approach this dilemma? What would a study of this problem look like? Until more clear evidence and consensus develops, I plan to continue to focus on goals of care, clearly beneficial interventions, and reducing burdens of treatment.

Brad Miller MD
Board Certified, Hospice and Palliative Medicine
Grass Valley, CA


ken covinsky said…
Great post. The whole issue of what to do long term with all these medicines is a big mess. For the most part, we have evidence that the medicines provide some benefit, usually quite small over the short term, along with significant side effects. It is really hard to make any intelligent recommendations about what to do over the long term because the evidence base is so weak.

I agree that RCTs of discontinuation are needed for end stage dementia. But this issue of whether there is any benefit from long term use, and whether these benefits exceed side effects are needed for much wider groups of dementia patients.
Ella Bowman said…
Excellent post and commentary. This mirrors my own practice and that of my partners. I have a mix of hospital consultant care as well as home care in my practice, the latter of which are often FAST 6 and beyond. I can add that in leading such discussions with families, I will take into consideration whether the patient has had a history of behavioral problems, for which the medication was also being used to manage. If there is any indication that the patient's refusal of care attempts or other manifestations of behavioral problems are ongoing in the end stage of dementia, I will make a "softer" call on stopping the meds outright - of course as long as the ability of the patient to take the meds is not outweighed by the burden of doing so. Thanks for commenting on this practical (and not at all well studied) topic.
Mike said…
As a longstanding hospice director, my thoughts on this have changed over the years. At this time I generally follow family requests. But I more importantly discuss the pt/family goals of care and their definitions of acceptable quality of life and the issues of medication benefit vs risks and pill burden. The discussion is very relevant to the increasing frequency of dealing with these issues.
I believe there is some benefit for the family when we continue the medications even if we can't get them to the place of feeling OK about discontinuing the drug. It may facilitate their completing the grief work and return to normal life with less "deep questions" remaining unanswered in their minds. (right or wrong)
I agree with the posts and the need for further evidence based conclusions so we can more effectively guide our patients and families through this ethical and emotional quagmire.
Rance said…
I agree there is no evidence to support the use of these medicines in the medically eligible dementia patient. I too support research on appropriate care for the dementia patient during the final stage of their life. I use goals of care as a guide for decision support. Great post! Thanks.
Eric Widera said…
What would a RTC look like? How do you show that these meds are of any benefit? How also do you show that discontinuing them doesn't cause harm?

It's hard for me to imagine for any significant benefit for end-stage hospice eligible (including FAST Stage 7) patients besides that of psychological benefit for the family. As Brad point out, hospice criteria if dementia is the primary terminal illness is that someone is incontinent, nonambulatory, and no longer able to communicate meaningfully. IADLs are out, as are ADLs. Neurocognitive tests are already pretty much bottomed out. So what outcome do you look at?
Jane said…
Great post. I am not a physician but a daughter, who helped both parents through the end of life with the help of Hospice, and a mother, trying to provide guidance to her grown children, who may not have to act for decades. I worry that people with Alzheimers can and are being kept alive way too long -- at least 15 years after diagnosis in the case of my former mother in law -- but how can I describe the cutoff for my girls if I find myself with an Alzheimer's diagnosis? So far, I've said if I don't recognize my children/grandchildren, if I have nothing to do all day, if I can't move about freely, I don't want to be kept alive with medical support including (especially!) cholinesterase inhibitors. Like the previous poster, I think designing a RCT to assess the benefit of these drugs in subjects with moderate to severe disease is the wrong way to look at the problem. As a biostat in clinical research, I think it's pretty easy to design a study that would show a benefit, statistically, or even clinically. But why? The right question is, When does the patient reach a QOL state that is unacceptable, given his/her goals or, in lieu of a detailed living will, those of a proxy?

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