A Palliative Care Community
This article was first published in the Minden Times in April 2025.
June Callwood wrote Twelve Weeks in Spring in 1986, a report on how she and a group of 60 or so people rallied together to allow 68-year-old Margaret Frazer, a single woman without family, to die in the comfort of her own home. They came together to offer around-the-clock company and care in her home for the twelve weeks between when she was discharged from hospital with a diagnosis of inoperable pancreatic cancer, and her death. It also described the process of her dying and its impact on her care-givers. Those who hung in – a few were ejected for not respecting how Margaret was making and managing her path to death (which included, until the very end, robust denial) and some bailed – found it a hugely beneficial experience.
I thought I might succumb to ‘good old days’ nostalgia, but in fact the book reminded me of what needs to happen when what is necessary is not available, an all-too-current situation. Especially, it seems to me, re end-of-life care. Which makes very little sense, given the greying of the demography. With age comes death, but apparently the funding priority is prolonging life. And while that is not a bad goal, it rather reeks of our modern aversion to the inevitability of death, and reflects an imbalance in our thinking. Yes live life well as long as you can, but also prepare to die well.
So what needs to happen when death comes calling?
Margaret Frazer’s wish was to live as long and as well as she could in her own home, where the succor of her garden and her music were available to her. There were no self-evident caregivers. Never a partner. One of her sisters was long gone, presumed dead; the other had long been out of touch (and when she did appear, although it was an appreciated gesture, did not make a positive contribution). Margaret left a career teaching high school English at the earliest possible time in order to enjoy life her chosen way: music, birds, gardening, Nellie’s shelter for women, the Holy Trinity community. (She helped this atypical Anglican church fight valiantly and successfully to continue to exist in the crook of the Eaton Centre, where it became a beacon of radical Christianity.) When Margaret’s diagnosis became known, acquaintances from these disparate worlds formed themselves into a care community. Because they worked in shifts, many only knew each other through comments in the Care Log, even when they gathered at Margaret’s funeral three months later.
So that is community at its basic and best.
It would not likely have been successful in supporting Margaret to her death had it not included Dr. Linda Rapson, a palliative care doctor – when that was a very new construct -- who broke the cardinal rule about professional distance and became a pivotal and passionate member of the team. As Margaret hung on better and longer than reasonably expected, Linda allowed herself to consider the unscientific possibility that Margaret might survive the cancer, which was Margaret’s public and compelling stance until her final days. Linda enforced the credo that Margaret, and Margaret alone, was in charge of managing her death process.
So that’s palliative medical care at its basic and best.
It included embracing a not-yet-approved (maybe still not) non-pharmaceutical approach to pain management, the Codetron, a kind of electronic acupuncture wannabe that avoided the dilemma of using opiates to relieve pain but cause constipation which causes pain and kills. And a Jobst boot that massaged fluids out of painfully swollen feet as the circulatory system failed. Augmented by human massage of all types. Callwood conjectures that Margaret was touched more in her dying days than perhaps in her entire prior life; Callwood saw this as achieving and manifesting love of a body going badly wrong.
What about the spiritual aspect? Margaret was a practicing Christian but it seems to me she did not go gently into that dark night. Which bothered me – I want death to be a peaceful transition from here to whatever comes after – and led me to review my beliefs.
The process of dying, I think, involves a dividing between the body and the soul; palliative care involves nurturing and empowering the soul so it can take its leave of a body no longer hospitable. That negotiation is visible and to some extent accessible when death is delivered by an aggressive destroyer like cancer. Not so much when the mind departs the body, as in dementia, but best to act as if cognition is there, just not accessible. Negotiation is entirely absent when death is instantaneous, the person felled by an exploding heart or artery, or despatched in an accident.
The best preparation, it seems to me, is seeing death as a logical, inevitable and, at some level, welcome end to life. Which translates into living each day as if it were our last. As Margaret did with the support of her accumulated community.
And that’s life at its basic and best.
