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