On September 9, 2014, John and I were honored to participate in a day-long seminar at the 20th International Congress on Palliative Care, held in Montreal. John had met Dr. Thomas Hutchinson, the organizer of the seminar, at a meeting in Madison several years ago but did not realize that he directs the McGill Programs in Whole Person Care. We don’t know if Whole Person Care programs exist in the US, but we hope there are at least a few.
Although the discussion about end-of-life care planning has been toxically politicized in wrangling over the Affordable Care Act, recently there’s been good news that patients covered by Medicare may finally be able to have these conversations with their physicians. These conversations should be a part of the medical care for persons of all ages and they are especially important when people receive a diagnosis of dementia.
Here is Tom’s description of the seminar:
Whole Person Care is caring for the whole person (body, mind, and spirit) with the purpose of facilitating healing. But what happens when the mind begins to fade? What happens to the person? And what about healing in the context of dementia? We will explore these questions through presentations, experiential exercises, and audience interaction.
The organization of the topics and speakers was brilliant. Dr. Howard Chertkow began by presenting “The Facts: Some Key Neurologic Data about Cognitive Impairment.” Dr. Chertkow and his colleagues developed a quick screening test called the Montreal Cognitive Assessment, though he noted that doctors test memory while families are often more concerned about personality changes like the loss of humor, apathy, and depression. Dr. Chertkow discussed the new testing being done for biomarkers (especially of Alzheimer’s disease) that appear long before symptoms. This is the focus of much cutting-edge research aimed at discovering an intervention to delay or even prevent the onset of symptoms. Dr. Chertkow is hopeful that better understanding of pharmacogenomics will enable clinicians to determine who may benefit from various drugs administered either before or after symptoms appear.
From the neuropathology of dementia, the seminar moved directly to the experience of dementia. Dr. Manuel Borod gave a moving talk about his family’s journey with his father through dementia. He wove together insights from his palliative care practice with stories of his dad who maintained a radiant smile and loving sense of humor throughout the process of memory loss and accumulating confusion. His talk reminded all of us in the audience how many of us have personal experiences of loving someone with dementia.
Then it was John’s turn to speak about the personhood of those with cognitive impairment and the ways that personhood has been defined through history. John concluded his talk by pulling out his soprano ukulele and leading the seminar participants (about 200 persons) in singing “The Dutchman,” a song about a woman caring for her husband with dementia. The chorus includes this line: “Long ago, I used to be a young man, and dear Margaret remembers that for me.” John and I like to say that someday I may be his Margaret, or perhaps he will be my Margaret.
From consideration of the person with dementia, we moved to a presentation on the family. Dr. Cory Ingram, of the Mayo Clinic in Rochester, MN, spoke about different types of dementia: in cortical types like Alzheimer’s there is an initial deficit in learning new information, but in subcortical types like progressive supranuclear palsy and Huntington's disease, there is a deficit in retrieving information as well as movement problems. Throughout his talk about the ambiguities and ambivalences experienced by families caring for a person with dementia, Dr. Ingram played audio clips of a daughter talking about her care for her mom. Dr. Ingram emphasized the question families are rarely asked: “What is it OK to die from?” Too often, persons with dementia die under conditions of too much or too little medical care.
From the family, we moved to the community, and it was time for John and me to talk. I began by describing the worldwide dementia-friendly community movement, noting that the literature on dementia-friendly communities often omits any discussion of dying, death, and palliative care, while the palliative care and hospice literature often omits discussion of the needs of persons with dementia. I don’t think I would have realized this so clearly if we hadn’t been invited to participate in this seminar. John concluded the presentation by describing the work of the Fox Valley Memory Project and the educational programs offered by the Fox Valley Coalition for End-of-Life Care. As we developed our talk, we referred often to our notes from the conferences on palliative care and dementia presented in Appleton in the mid-2000s by Dr. Abhilash Desai (now head of the Idaho Memory and Aging Center). Dr. Desai and his colleagues were most definitely engaging in Whole Person Care!
After a break, nearly everyone returned for a panel discussion led by Dr. Hutchinson. He teared up a bit as he spoke of his mom dying with dementia, and about the highs and lows of hope. He asked the audience to get into small groups to talk about their experiences along this up and down line of emotion through time. One by one, audience members told moving stories of their experiences with persons with dementia. Often, we panel members had nothing to add except a word of thanks for the courage of storytelling.
John and I are deeply grateful that we had this opportunity to meet such outstanding caring palliative care physicians. Knowing that they are so committed to the idea that good quality of life includes planning for good quality in dying gives us hope. Here’s what our last slide said about this:
A dementia-friendly community will support people with the diagnosis, their care partners, and their paid caregivers throughout the course of the dementia in the difficult discussions necessary for a good death. “The good death is the continuation of a good life until it is no more” (Kastenbaum, 2004, p. 125)