Saturday, October 11, 2014

International Congress on Palliative Care 2014 review - Dementia, Ars Moriendi and inspiration

The International Congress on Palliative Care has been a treasured occasion for me during my career in palliative medicine. I’ve been able to attend the event held every 2 years in Montreal 4 times in the past 12 years, generally at times of transition. The 1st time I attended was during the 3rd year of my family medicine residency, shortly after I had learned that palliative medicine was a career option and I was considering pursuing a fellowship. While there, I spent time with the doctors who would become my fellowship teachers and later my colleagues in a setting that supported my sense that this was a field that would foster my love of looking at the psychological and spiritual as well as physical aspects of the patient, family and community. Since then, I have attended 2 other congresses while between jobs, first when I shifted from hospital consults to full time hospice work, and this time as I move to the VA hospital. The Congress once again gave me both “brain food” and “soul food” to help me in this time of change, giving me the chance to listen to many whom I respect, including Bal Mount, Betty Ferrell, Mary Lynn McPherson and Ken Doka.

There is often a word that bubbles to the surface over the course of the week. For me, this year, the word is “accompanying”. The question raised over and over in the week, using a phrase of Mary Oliver’s, “How do we accompany our fellow humans in this one fragile and wild life?’ This was most clearly discussed during a plenary session by the French sociologist, Tanguy Chantel, author of Vivants jusqu'à la mort: Accompagner la souffrance spirituelle en fin de vie. (Living Until Death: Accompanying the spiritual suffering at the end of life). This one time tax lawyer described finding meaning in his volunteering with patients in palliative care, which then made it difficult for him to continue being satisfied in his day job, leading to a change in vocation. He raised the concern that medical providers have changed the often recited phrase from “cure sometimes, relieve often and comfort always” to “cure almost always, relieve often and comfort if we have the time.” He discussed the shift towards the worshipping of the cult of performance that values goals and projects over relationships and focuses the adaptation of the person to the goal rather than the goal to the person. He encouraged palliative medicine to stay on the margins (where our willingness to discuss mortality will keep us) as an avante-gard subversion of the cult of performance. He encouraged us to be vigilant, constructive, convincing, ambitious and audacious in our giving voice to the power of presence, of accompaniment. I only wish his book was translated into English.

In Montreal, there were several talks related to need needs of growing numbers of people with dementia. Nicole Poirier present a plenary session describing her project, Carpe Diem-Alzheimer’s Resource Center. She described opening her family home for people with dementia to stay, living in community with others who learn to see what they have to give to their relationship rather than focusing on their limitations, in some ways echoing the L’Arch communities and Jena Vanier. 

Looking for the strengths of those with dementia was also echoed in the pre-conference planned by Tom Hutchinson on “Whole Person Care for Persons with Cognitive Impairment. In that workshop, John McFadden talked about the Purple Angel, a symbol used to indicate dementia friendly communities, rather than having the diagnosis lead to isolation for the patient and family. ( Susan McFadden’s asked the question of why we describe the patient with Alzheimer’s as either living in the community or in a facility, as if the facility isn’t still in the community. John also voiced his frustration of the more effective psychosocial interventions for agitated patients being called the non-pharmacologic interventions, as if the drugs were the 1st line of treatment. He encouraged calling risperidone and related medications the non-psycho-social interventions instead.

On the last day of the Congress, one of the plenary speakers was Carlo Leget, a theologian from Utrecht, the Netherlands, who spoke on “the Ars Moriendi Tradition: Looking Back to Move Forward”. I learned about the Ars Moriendi tradition through the Anamcara Project of the Sacred Art of Living Center. The Center works to help facilitate the development of interested people in the art of spiritual care of people at the end of life. Similar to similar programs such as the Metta Institute and Upaya Being With Dying program, focusing on self-reflection to help us understand our role as wounded healers preparing to be present to the joy and suffering of the other. It uses a Celtic frame of training people to be the soul friend of a person reaching the end of life, developed by Richard and Mary Groves and John O’Donohue. Richard talks about the ancient monastic tradition which was lost with the Inquisition and the burning of books including those describing the art of comforting those who are suffering at the end of life. Leget describes 5 questions that often come to mind in the setting of a serious illness that were addressed in the Ars Moriendi. 1. Who am I and what do I really want? 2. How do I deal with suffering? 3. How can I let go of this life? 4. How do I look back at my life? 5. What can I hope for now. This final question has led to research on hope, including this article on whether hope should be truthful, helpful or valuable.

In my time at this congress, I talked with not only physicians and nurses, but sociologists, ethicists, chaplains and grief counselors who work together to provide that sacred place where the person with an advance progressing illness can look at these questions. I appreciated his and numerous other presenters in their encouragement of our ongoing work of deepening our ability to be present to those with whom we are privileged to work. They echoed the phrase often used by Richard Groves that no matter what else we offer, much of the time “we are the medicine”. Coming away from this week, I feel more grounded, ready to accompany a new group of people, this time veterans, in this “one wild and precious life”.

To read some of the tweets giving highlights of talks from those attending the Congress, look up the hashtag #palcarecongress.

KJ Williams is a palliative care physician currently living and working in Madison, WI.  She is greatly influenced by those who look at how we learn to be wounded healers.  When not working, you can find her seeking out great music to listen to or to be part of creating.

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