Amy and Sorenne came to visit me last night at the Clinical Facility I’ve been staying at for the past two weeks and we went out for dinner (the seafood was fabulous).
That’s me and the kid last night at dinner (right).
I checked myself in because I have been randomly falling when walking — the sidewalk just sorta rises up and I smash my head yet again. The other day I endured two seizures while eating lunch in the cafeteria and the docs present shipped me off to Emergency.
Long-time skeptics are finally agreeing with me that these things are happening because of genetics, booze (which is primarily to provide numbness to the fog upstairs but I’m going without) 50 years of pucks to the head, dozens of concussions, epilepsy and whatever else may be happening in that precious organ known as the brain.
So I haven’t been writing much.
They shipped out to New Caledonia this morning for Amy’s work for a few days, so I made sure I was taken care of so she wouldn’t have to worry.
It is seemingly impossible to get a sandwich or salad in Australia without it being covered in raw sprouts.
This is Amy’s salad from dinner last night (left).
This is not food safety but could be. A colleague never knew this story, so I found it and shared it with him.
And know all of youse who don’t like it, start your own blog.
Oh, and hit delete.
That’s me and grandma, 1963.
Wrote this for the Globe and Mail in 1994
How We Die
Reflections on Life’s Final Chapter
Sherwin B. Nuland
Alfred A. Knopf
A Gentle Death
Marilynne Seguin, R.N.
Key Porter Books
Review by Douglas Powell
My grandmother ended her own life. After five years of painstaking care for her husband, who was slowly deteriorating from the cerebral ravages of Alzheimer’s disease, she decided that a sixth was not worth facing.
Her death was quick and without warning. One moment we were saying goodbye before a routine trip to the store, the next I was transferring her from car to wheelchair at the hospital emergency ward. Within 30 minutes she was officially deceased, the result of a major pharmaceutical overdose.
Looking back, I’ve often wondered what I would say to her, given the chance. Don’t do it, life is really okay. You are not alone. Things will get better.
But in reality, life is often harsh, she was often alone, and the prospects of yet another winter, trekking to the hospital each day to watch the person she had spent the vast majority of her life with become even more unfamiliar, meant that things certainly were not about to get better; at least not in any foreseeable future.
Western society is finally being forced to grapple with some of the difficult consequences that arise when medical technology conflicts with individual rights and freedoms. In Canada, Nancy B., a 25 year-old quadriplegic, and Sue Rodriquez, who suffered from the degenerative wasting of Lou Gehrig’s disease, have challenged existing laws and brought the question of when to say enough is enough to the arena of public debate. The discussion is welcome and the only antidote to the private anguish of such decisions, as is forcefully brought home in two new books.
Humans have created powerful myths and rituals to accompany death, writes Sherwin Nuland in How We Die, but perhaps none more bizarre than the modern hospital, “where it can be hidden, cleansed of its organic blight, and finally packaged for modern burial. We can now deny the power not only of death but of nature itself. We hide our faces from its face, but still we spread our fingers just a bit, because there is something in us that cannot resist a peek.”
Dr. Nuland, a physician who has authored several books about the medical profession and continues to teach surgery and the history of medicine at Yale University, says this book was written to demythologize the process of dying, to present it in its biological and clinical realities. The changes at a cellular and organ-level that accompany heart attacks, stroke and cancer are presented in detail that may be intimidating to the uninitiated. Then again, any person who is faced with life-threatening disease can quite rapidly assimilate the medical jargon — they have to. Physicians capable of talking in clear, simple language are rare.
Nuland is blunt. Despite the gripping television constructs, few of the 350,000 Americans who suffer cardiac arrest each year actually survive. Nuland observes that after the vain attempts at resuscitation, the critical response team eventually stops and the mood is transformed from heroic rescue to dejected gloom of failure. But it’s the patient and their families that Nuland, like any good — and increasingly rare — general practitioner focuses on. “The patient dies alone among strangers: well-meaning, empathetic, determinedly committed to sustaining his life — but strangers nonetheless. There is no dignity here.”
Then there’s the story of Dr. Nuland as young intern and his first crisis when a patient went into massive cardiac. Using all his training, Nuland opened the man’s chest and began to massage his heart, as was the routine practice at the time, but to no avail. The man died. Yet suddenly he “threw back his head once more and, staring upward at the ceiling with the glassy unseeing gaze of open dead eyes, roared out to the distant heavens a dreadful rasping whoop that sounded like the hounds of hell were barking. Only later did I realize that what I heard was McCarty’s version of the death rattle, a sound made by spasm in the muscles of the voice box, caused by the increased acidity in the blood of a newly dead man. It was his way, it seemed, of telling me to desist — my efforts to bring him back to life could only be in vain.” Or, as Nuland constantly reminds the reader, “we rarely go gentle into that good night.”
Marilynne Seguin’s A Gentle Death is an attempt to help ease that journey for patients and their families. Sequin, a registered nurse for over 30 years as well as a founding member and executive director of the Toronto-based Dying With Dignity tells how she, like Nuland, was trained to prolong life at all costs. Experience has taught her to question prevailing attitudes of the medical establishment and she stresses that patients must become informed and responsible for the medical decisions that affects their lives.
In presenting the many examples of people approaching death who Sequin has cared for, a common theme emerges. Rather than a passive silence, many approaching death wish to be at home, surrounded by the noise of children — the noise of life — rather than the sobering silence of loneliness.
Both books try to dispel the hero myth, the one where the nurse or physician is never to allow the patient to lose hope. Yet hope and wishing for miracles get in the way of true discussion; it robs people of their death. Nuland confronts this reality head on when he describes how, when his brother Harvey was diagnosed with bowel cancer in 1989, he made “a series of mistakes. … I became convinced that telling my brother the absolute truth would ‘take away his only hope.’ I did exactly what I have warned others against.” Harvey was enrolled in an experimental therapy that showed initial promise but in the end increased and prolonged his anguish. Eventually, Harvey returned home to die.
These two books, and others, are a continuation of an expanding public interest in death. Certainly part of that interest can be attributed to the demographics of baby boomers. The group that first discovered drugs, free love, parenthood, the mid-life crisis and menopause has now discovered death. And along with those who want to face biological realities there will be those who desire to live beyond their biological means. Nuland writes we are currently in the vitamin era, following previous attempts to prolong life through the pseudoscience of monkey glands, mother’s milk, and, as King David tried, sleeping between two virgins. Coming soon will be expanded attempts to prolong life through the mass availability of human growth hormone, derived by genetic engineering, and gene therapy. Only “accurate knowledge of how a disease kills,” writes Nuland, “serves to free us from unnecessary terrors of what we might be fated to endure when we die. We may thus be better prepared to recognize the stations at which it is appropriate to ask for relief, or perhaps to begin contemplating whether to end the journey altogether.”
Which leads to the hotly debated topic of physician-assisted suicide and the right of rational individuals to decide how and when to end their lives. At this point the two books differ strongly. Nuland approves of Living Wills and other advanced care directives, instructing physicians what treatments to withhold in the face of terminal illness, but he strongly disapproves of physician-assisted suicide. Seguin, however, sees no distinction. Much of her book is devoted to a frank discussion of the practical advantages and limitations of such approaches.
Nuland, however, fails to come clean on the topic, when he mentions in passing that, “Like so many of my colleagues, I have more than once broken the law to ease a patient’s going, because my promise, spoken or implied, could not be kept unless I did so.” Seguin states quite clearly that many physicians have engaged in such activity, so why not create clear, legally-binding rules, as has been done in the Netherlands.
One Dutch physician who supports the new law says society needs a counterweight for the enormous technology of modern medicine. But more importantly he says, it gives the patient a chance to take leave openly of his children, his grandchildren, and others.
That openness seems crucial to further public discussion of death and dying. I still wonder what I would say to someone who is about to leave this earth on their own accord. Both books provide unique and moving insight into such conversations. Perhaps I now know what I might have said to my grandmother.
Douglas Powell is a graduate student at the University of Guelph.
I built this electronic community originally as the Food Safety Network beginning in Jan. 1993. I consider it one big food safety family.
I provided a health update, not because I sought sympathy, but because I thought I should let the family know what was going on and why my writing had declined.
Australia is currently burning, and every time someone who has just lost everything is interviewed, they talk about how grateful they are for what they have and how they will plunge ahead.
It’s the Australian way, and I am very much of that attitude.
I am not wallowing, I am grateful that Deb will be here in a few minutes for the next four hours (not sure we can go for a walk, there is so much smoke in Brisbane from the fires 100km away that health warnings have been issued).
I’ll continue to teach her about hockey (in Australia you have to call it ice hockey).
And look at these two. They have arrived in Paris, where it’s 5C, and they have no winter clothes, because we are spoiled in Brisbane.
A couple of weeks ago, my wife was helping me into a diaper.
The next day I was trying out a walker so I don’t fall so much.
That’s fairly humbling.
I haven’t been able to write as much as I used to, and don’t know if I ever will, because as my doctor told me recently, you’re a smart guy, you know what’s going on, and I do – most of the time.
Last Monday I was writing at home and developed a full-on seizure and could only speak gobbylgook. Amy asked me what’s her name and all I could mutter was, Bo.
I never call her Bo.
My capacity to speak returned after a couple of minutes, but I soon announced, I feel another one coming on. This time I lost consciousness, stopped breathing and woke up in the hospital. Spent the week there.
Amy and Sorenne are off to France in a few hours – she is a French professor – but somehow, we now live in this country (that would be Australia) that awarded my family support to pay for caregivers who make sure I don’t fall over when we walk to get groceries.
It’s cheaper to keep me in the home rather than an institution.
None of the money goes to us, but it means we get a weekly cleaner (who has the most fabulous tools) and I get about 3 hours of assisted care daily from these nice people. I’m getting extra hours while the family is in France.