What is Optimal End-of-Life and Palliative Care in Patients With Dementia?

Michael Gordon MD, MSc, FRCPC is a geriatrician working at Baycrest Health Science System. He is medical program director of the palliative care program, co-head of the clinical ethics program and a professor of Medicine at the University of Toronto. He is the author of Late Stage Dementia, Promoting Compassion, Comfort and Care; Moments that Matter: Cases in Ethical Eldercare and Brooklyn Beginnings: A Geriatrician's Odyssey. For more information see drmichaelgordon.com

For those healthcare providers who provide late stage, end-of-life, palliative and long-term care to those living with dementia, the challenges of providing compassionate and comfortable care are always a challenge. We have to remember that it was not that long ago that one could have written article on the challenges of providing such care to those experiencing the later stages of a terminal malignant disease. I recall during my American internship, which followed on in Scotland where I attended medical school, the common practice of “working up” what were in those days categorized as “public” patients, because of their lack of insurance, was a major comprehensive exercise. Part of the benefits of working on the “public” wards for physicians-in-training was the almost limitless ability to order tests which might in fact have been prohibitive to those with insurance that had various limitations and caps on costs.

The part of the rotation on the general medical ward that I recall most vividly was after “working-up” a middle aged man with what initially were vague symptoms with weight loss and anemia being among the objective findings, a semi-occult malignancy which had already metastasized  was discovered. From being an “interesting” patient on which many of us “house staff” doted, he became a “doomed” man, to the point that when we reached his room on rounds, we discussed his case with hushed tones, just outside his door (as if he could not hear us) and then made our visit quite short and for sure short on empathy, sympathy or true communication. Since there was little therapeutic to offer in those days other than some level of pain management which in its own right presented problems because of the inordinate fear of “addictive” opiates, it was a bit of a surrealistic pantomime of modern medicine trying to let him finish with his disease and life after so much effort and money went into establishing his diagnosis. At least in contemporary medicine we have graduated to a much more comprehensive clinical, psycho-social, and when indicated supportive palliative or hospice approach for the terminal stage of malignant diseases.

With late and end-stage dementia we are beginning to get there as well if not universally than at least in pockets of enlightened health care delivery systems and among individuals who understand the inordinate challenges that the terminal phase of dementia poses for patients, their families and all the health care professionals charged by their professionals positions and choices with their care. Much of this care does or at least should take place in the home, the long-term care setting and as infrequently as possible in the acute care system. When the latter does occur it is in many ways evidence of the failure of either the system, communication by professionals with patients or families or institutions that have to recognized or incorporated the necessary services and features of care that must exist for proper end-of-life and palliative care to occur in the population at the terminal stages of dementia.

The white paper (policy and review) recently published by The European Association for Palliative Care (EAPC) has outlined what good palliative care for older people with dementia should look like. It was published in the July 2013 issue of Palliative Medicine. The recommendations made in the article would seem to be almost self-evident to those committed to such care and who are working in situations where this level of care can be achieved. But those involved in end-of-life dementia care either from our own local battles or from understanding our colleagues battles, such commitment, dedication and program support is not always forth-coming. That being said, to have a cogent, well investigated policy paper produced offers great satisfaction and evidence to those in the field to continue in our efforts.

Among the most salient features recommended by the white paper, includes definitions “of optimal palliative care for older people with dementia by making 57 recommendations (within 11 domains) and is aimed at people working in policy and research as well as those providing care.”

The 11 domains are:

1. applicability of palliative care
2. person-centred care, communication and shared decision making
3. setting care goals and advance planning
4. continuity of care
5. prognostication and timely recognition of dying
6. avoiding overly aggressive, burdensome or futile treatment
7. optimal treatment of symptoms and providing comfort
8. psychosocial and spiritual support
9. family care and involvement
10. education of the health care team
11. societal and ethical issues.

Of great importance in the paper, especially for those of us (of which there are more and more) who work in multicultural communities, the authors highlight the importance of taking into account local culture and practice when implementing the recommendations. Such issues might include the importance of food even at the end of life for many ethno-cultural communities and the professional challenges that exist among staff trying to on the one hand provide compassionate care while respecting the family’s focus on providing food even when there might be risks involved with no evidence of true “clinical” benefit but of very important emotional and cultural benefit to those who are the family and community caregivers.

“The authors also suggest that the recommendations can be used as a framework to help to identify gaps in curricula or in information provided to families, in the development and implementation of policies, to develop quality indicators or to make comparisons with definitions or conceptualisations of palliative care in other progressive chronic diseases.” It is indeed, a very modest but important proposal.