by Rosemary Gray-Snelgrove
Ms. Wente and I see things from different sides of the street. Or the tracks. I don’t even know her. But she does cover, in her G & M column, a wide range of ‘social’ topics and touches regularly on issues that I’ve been thinking about. Whether it’s Tiger Mothers, or new Brain Research, or – as today, Palliative Care, she is living in the same sphere of interest that I move along in. So I mention her again in today’s blog.
A year ago she had a very unfortunate experience, of accompanying her mother in the weeks of terminal illness during which pain management was very poor in the regular hospital setting – no matter how hard she and her family tried to alter the rigidity of the rules that didn’t meet her mother’s needs. Once the patient was in the care of a hospital with a dedicated program of palliative care (the Salvation Army’s Grace Hospital), there was relief for her dying mother and thus for the family. But not everyone makes it to a proper palliative service and untold pain and suffering continues.
I find this appalling. Thirty years ago, I completed doctoral research into the subject of care of the dying, from the perspective of the family member who had become a caregiver for a parent. Most of the subjects of the study had found hospital settings or hospices in which the pain was well managed, and where the entire focus of the ward was upon relief for the patient AND for the family accompanying them.
I had been blessed, when my mother had been dying of cancer five years earlier, of knowing people who were involved in setting up the palliative care unit at the Royal Victoria Hospital in Montreal. I was living in Toronto, but my mother was in Deux Montagnes, twenty miles from Montreal, and her doctor, I knew, was not well acquainted with current theory and research about terminal care. I phoned Dr. Balfour Mount, the founder of the Royal Vic program that aimed to allow people to die in a dignified – and therefore pain free – manner. I knew this required that the medical personnel involved had to give up their traditional goals of saving life above all. They had to become attuned to the need for comfort of a person who was not going to get better; to become proficient in assessing the patient’s hour-by-hour state. Pain control might require the use of drugs that would – in normal circumstances – make the person more ill, lead to addiction, or possibly death. The predominant mixture of drugs that seemed to work when other meds no longer did was known as the Brompton Cocktail. A time limit on when and how often it could be provided was flexible – the patient’s comfort was the goal.
Dr. Mount advised me to ensure that, when my mother, sister and I could no longer cope with her discomfort at home we should call an ambulance and give directions to take her to the Royal Vic in Montreal. This we had to do about a month later. For the first few weeks, following some surgery, she was in a regular surgical ward and received palliative treatment. Her name was now on the list for the Palliative Care ward, where she ultimately spent the last month of her life. Everything about it was different. There was chintz and flowered wallpaper and colourful pillows and a comfortable sitting room for patients where coffee and tea were available. She was at ease there from the first. A lounging chair was provided for any one of us to sleep on beside her bed, and she could have as many guests as she could handle.
It all worked so well.
Why, thirty years later, are there so few Palliative Care facilities for the growing numbers of people who need them (growing as the population grows, and as we Boomers age)?
Three years ago, a dear friend who was aware that pain control protocols were in place in palliative care units elsewhere, sat with her husband while, in his last weeks, he died an agonizing death in a hospital in the Ottawa Valley that refused to apply a flexible pain management approach. Since then, she has become engaged with policy makers in her region but they appear oblivious or indifferent to the research of the last three decades that points toward the medical benefits of good pain control and also to the improved health of family members who can participate in end-of-life caregiving with a flexible medical staff.
Unnecessary pain is awful. It’s wrong. We have the knowledge but not the willingness to alter the power and control exercised by those unwilling to alter their view of death and pain as something to be controlled by their expertise – rather than a communal reality that patients, family, and medical staff TOGETHER should figure out the best way to handle, case by case.
Please comment if you are familiar with any of these issues, or if you can offer a way to illuminate why palliative care is going backwards, not forwards.