Most of us have spent some time thinking about our own deaths. We do it with a sense of dreadful curiosity, but then we push it aside with “well, we’ve all got to go sometime.”
Unlike most people, I probably know the how, the why, and maybe even the when of that event. It is profound information that turns the world upside down for us, our families, friends and caregivers.
I have cancer that is incurable, aggressive, and has negligible survival odds. My chemotherapy is a long shot. I will leave a spouse, children, siblings and a life that I love and cherish. I cannot imagine existence without them.
In a moving piece recently published in the Annals of Internal Medicine, surgeon Mark Vierra describes his emergency room encounter with a man dying from colorectal cancer. Called to discuss possible surgery for a perforated bowel, Dr. Vierra sadly observes that despite the patient’s grim prognosis, he and his wife “had not discussed limits on his care, how far to carry things, what to do when the treatment stopped working, or when the end was in sight.” They had not had any of these discussions with their primary care physician or either of his oncologists. After Dr. Vierra reviews the options and the patient’s wife chooses hospice care, he reflects on the wide gulf between the reality of end-of-life decision-making and the damaging political rhetoric of “death panels”:
I should not have been called to see this patient. Decisions like the one we had to make that day should have been made among friends and family or in the company of his family physician or oncologist, at a time when he was awake and at his best, when he was not in pain, and he could remember who he was and he could explain to those he would leave behind how he wanted to be remembered. To have to make such decisions the way we did that day—counseled by a stranger in the sterile alcove of a busy emergency room—is not what any of us would want. That it turned out the way it did, I believe, was fortunate. It would have been so easy for the powerful momentum of modern medicine to have carried his broken body into the operating room and from there to the ICU, where he would be nurtured by the finest medical technology and the clinical compassion of strangers.
Doctors often do not seek for themselves treatments they offer patients. This is particularly true for end of life care. I’ve seen examples of that all my career. I’ve also asked doctors about whether or not they personally would seek aggressive of treatment if they had a specific type of cancer. Rarely do they say yes.
The question is, what’s up? The WSJ today has a really good article on this topic. Click here to read it. The following quote probably sums it up: “It’s not something that we like to talk about, but doctors die, too. What’s unusual about them is not how much treatment they get compared with most Americans, but how little. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care that they could want. But they tend to go serenely and gently.”
I’ve made it abundantly clear to my family that when my time comes I want to exit quietly, as painlessly as possible, and with dignity. That makes the best sense to me, and evidently to most doctors too.
There was an exceptionally well-written piece published in the Washington Post this weekend. I presume a hospitalist wrote it, which magnifies its significance. In it, he describes the difficulties in caring for terminally ill patients.
As I read it, it reminded me of a story my dad told me several years ago. His friend, I will call him Steve, was experiencing a great deal of stress because of his dad’s ailing health. You see, his father had end stage dementia.
The Supreme Court of Canada will soon be taking up the issue of whether doctors need consent before taking a patient off life support. As reported here in The Globe and Mail:
The country’s top court has granted leave to appeal to the doctors of . . . a man who has been in a coma at Toronto’s Sunnybrook Health Sciences Centre since October, 2010. His doctors diagnosed him as being in a “permanently vegetative state” and recommended he be taken off life support, but his wife and substitute decision-maker . . . strongly opposed. Now the doctors have turned to the Supreme Court in hopes of disconnecting Mr. Rasouli from the medical machines that are keeping him alive.
In the wake of the Obama Administration’s retreat from allowing Medicare to pay physicians to counsel patients on their end-of-life options, here’s a short but powerful perspective by Atul Gawande, who wrote in depth last August in the New Yorker about how inadequate we are at helping patients negotiate death.
Here’s a 3 minute clip from Atul Gawande’s lecture at the New Yorker Festival in early October, titled “How To Live When You Have To Die.” I was extremely fortunate to be invited to be in that audience. It was not only informative and useful, but moving in a way and to a degree that exceeds any other professional presentation in my career. This taste provides some key information on questions worth posing to anyone facing death, but for anyone interested in the topic, I’d encourage you to invest $4.95 and an hour and a quarter, and watch the entire presentation here. I promise you that the experience will be well worth the investment.