Jim Mulcahy opened the Palliative Care Matters Consensus Development Conference (November 9-12, 2016 in Ottawa). His profound words on the meaning of care in the face of illness and death illuminated the deliberations and inspired the recommendations. Here is the essence of what he said:
“When the efficacy of curative medicine has run its course, quality medical care becomes not so much a matter of what you do to the patient as a matter of who you are willing to be with that person. Such profoundly vulnerable and personal relationships are not only acts of transformative healing compassion, but act of courage as well. The courage to abandon the security and protection of familiar roles and routines, the clinical postures and personas we adopt to effect an insulating distance. The courage to ultimately surrender the struggle to intervene to make life conform to our own wishes and let the current of the illness carry us where it will. And the courage to abide attentively in the kinship of silence when words are too weak or intrusive or disruptive to be spoken.
The hardest thing is to remain in that kinship of silence. We want to do something or say something, rather than to remain in the intensity of those moments. But that is the very time we cannot abandon the suffering. This state of vulnerable kinship is the still point in the turning world of palliative care. It is the lived acknowledgement and therapeutic significance of an authentic, personal, compassionate relationship between the caregiver and the patient. A relationship of trust, commitment and tenderness (another word we have lost in our medical lexicon) between the caregiver and the patient.
It is a gift, a blessing given and not without cost by the caregiver to the patient – the gift of community, the gift of consolation, meaning and companionship. A gift which ennobles the caregiver and the patient in equal measure.
I’m going to repeat that because it is so important. I get so sick and tired of tired people talking about the professions in terms that deny the possibility that it just might be an act of nobility to dedicate your life to caring for people.
My wife is not a health care consumer. She is a person and she has a name. She is not just a pathology. And people who care for her genuinely in my estimation are noble. It is a gift that ennobles the caregiver, as well as the patient, in equal measure. A gift given until we are no more. It is the ancient, archetypal expression of human solidarity that one should care for another. And it is the measure of what is best in us as people and as a country.”
Born and raised in Halifax, Jim Mulcahy taught English and drama in Antigonish, Nova Scotia public schools for over thirty years. Forced to retire after his second cancer diagnosis, Mr. Mulcahy became actively engaged as a patient advocate serving on local, provincial, and national healthcare committees. He has an honourary doctorate from St. Francis Xavier University for his contributions as educator and patient advocate. For the past twelve years Mr. Mulcahy has been his wife Sarah’s primary caregiver. Sarah is in the latter stages of Huntington’s and three of their four adult children have the same disease. Last year, their three year-old grandchild was diagnosed with an incurable, life threatening blood disorder. Mr. Mulcahy and his family were the subject of “A Story of Care”, a palliative care resource video produced by the Canadian Virtual Hospice and the Canadian Association of Schools of Nursing.
Published with Mr. Mulcahy’s permission.