When we speak of improving medical care, we usually mean new, more effective drugs or procedures that prevent or substantially delay death and alleviate suffering. These are worthwhile goals, to be sure. But we can also improve the quality of life of patients and their families and the relationship of caregivers and patients. This was brought to mind as I examined my small pile of saved articles that I thought might be useful in writing a column. It turns out that four of the articles deal with end-of-life issues and one with medical errors.
Medicine is a craft as well as a profession and many aspects of learning a craft come from imitation of our superiors and colleagues and abiding by the unwritten guidelines and rules. This is a useful method that leads to a comfortable routine that can be more efficient. However, changes constantly occur in our social environment bringing new ideas that question what is still acceptable and what may no longer be in line with ideas and beliefs of the current mood and spirit of the era. Doctors and patients are part of that society and should be alert to major potential changes. Bob Dylan's lyrics are appropriate here: “the times they are a-changing.”
Dr. Atul Gawande, the surgeon and superb writer, wrote one of the best recent articles on end-of-life issues a few years ago in The New Yorker (2 August 2010). If you haven't read it, I urge you to do so. Here are some of his comments: “Modern medicine is good at staving off death with aggressive interventions—and bad at knowing when to focus, instead, on improving the days that terminal patients have left.”
We have all seen this irony. We choose technology of one kind or another to save... what? A few more days or weeks in a hospital bed with a string of diagnostic tests every day that will not change the ultimate outcome, but will make getting there a purgatory of false hopes, fear, pain, discomfort, and the rest.
After describing the end-of-life experience of several patients, Gawande points out that, “Almost all of these patients had known, for some time, that they had a terminal condition. Yet they—along with their families and doctors—were unprepared for the final stage.” His friend, an ICU doctor, commented that, “We are having more conversation now about what patients want for the end of their life, by far, than they have had in all their lives to this point. The problem is that's way too late.”
Gawande goes on: “Spending one's final days in an ICU because of terminal illness is for most people a kind of failure. You lie on a ventilator, your every organ shutting down, your mind teetering on delirium and permanently beyond realizing that you will never leave this borrowed, fluorescent space. The end comes with no chance to say goodbye or ‘I love you,’ ‘I'm sorry,’ or ‘It's OK.’ And studies have shown that most terminal patients are more concerned with being with family, being mentally aware, and having the touch of others than with extending life.”
‘Why Doctors Die Differently’
That is the title of an article that Dr. Ken Murray wrote that appeared in the Wall Street Journal (25 February 2012). He first described a friend, a 68-year-old orthopedist, who was diagnosed with pancreatic cancer. He was offered a “new” surgical procedure that was shown to increase five-year survivals from five to 15 percent, albeit with a poor quality of life. He declined, closed his practice, and never set foot in a hospital again. He had no chemotherapy, radiation, or surgery. Several months later he died at home. Doctors know what will happen, they know the choices, but they tend to go serenely and gently.
Murray referred to an article (first author Joseph Gallo) that reported a survey of 765 doctors about their end-of-life decisions. The survey found that 64 percent of the doctors had created an advance directive that specified the steps that should or should not be taken to save their lives should they become incapacitated. This compares with the 20 percent rate in the general public who have done so.
One reason for the difference, Murray believes, is underscored by CPR: He notes that on TV the application of CPR is successful in 75 percent of cases and that 67 percent of patients were able to recover and go home. In reality, though, as found in a study of 95,000 cases of CPR, only eight percent of patients survived for more than a month, and of these, only three percent were able to lead a mostly normal life.
The public largely believes that there is always an effective treatment available somewhere. But unfortunately, that is not true and it leads too many to seek out and often obtain useless, but expensive treatments.
Dr. Oliver Sacks, the neurologist and prolific writer, shocked me when I saw his article in the New York Times earlier this year titled “My Own Life” (19 February 2015). The first paragraph: “A month ago, I felt I was in good health, even robust health. At 81, I still swim a mile a day. But my luck has run out—a few weeks ago, I learned that I have multiple metastases in my liver. Nine years ago it was discovered that I had a rare tumor of the eye, an ocular melanoma. Although the radiation and lasering to remove the tumor ultimately left me blind in that eye, only in rare case do such tumors metastasize. I am among the unlucky 2%.”
He then describes how he wishes to live the rest of his life. “I have to live in the richest, deepest, most productive way that I can.” He quotes the philosopher David Hume who was in similar circumstances at age 65. “I now reckon upon a speedy resolution. I have suffered very little pain from my disorder; and what is more strange, have, notwithstanding the great decline of my person, never suffered an abatement of my spirits. I possess the same ardour as ever in study, and the same gaiety in company.”
Sacks goes on: “Over the last few days, I have been able to see my life as from a great altitude, as a sort of landscape, with a deepening sense of connection to all its parts. This will involve audacity, clarity, and plain speaking; trying to straighten my accounts with the world. But there will be time, too, for some fun (and even some silliness, as well). There is no time for anything inessential. I must focus on myself, my work and my friends. I shall no longer look at the ‘NewsHour’ every night. I shall no longer pay any attention to politics or arguments about global warming. This is not indifference, but detachment. I cannot pretend I am without fear. But my predominant feeling is one of gratitude. I have loved and been loved, I have been given much and I have given something in return.”
In this case, the terminal patient is not only knowledgeable about the consequences and short time left for him, but he has marked his path from here on with a focus on what really matters in his life. We should all be so brave.
Legalizing Physician-Assisted Dying in Canada
More recently, a Perspective article in the New England Journal of Medicine by Amir Attaran (2 June 2015) describes the remarkable change in attitude of Canadians toward physician-assisted dying. There has been a shift to strong public and political support in recent years. The country-wide approval will take effect after a current “grace period,” although Quebec has already developed the standards for its application.
The best aspect of the article is the reasoning of the courts over the years that has evolved to a bedrock factor, the freedom of the individual to control his life. The author does an excellent job of describing how the changes in attitude developed, providing thoughtful and, in most cases, reasonable steps over the years.
I recommend this article for all of us, because in the U.S., only Oregon and perhaps soon, California, allow physician-assisted dying. The current political climate suggests that a national effort would not be successful. Nonetheless, if a country similar to ours can evolve so quickly, it could happen here.
Medical Error Transparency
Finally, a recent article by Joshua Rothman in The New Yorker titled “Anatomy of Error” (18 May 2015) describes a fascinating book by Dr. Henry Marsh, a London neurosurgeon and one of the foremost in his field. He has been the subject of two documentary films, yet he writes in his memoir, Do No Harm: “As I approach the end of my career I feel an increasing obligation to bear witness to past mistakes I have made.”
A few years ago he prepared a lecture called “All My Worst Mistakes.” Marsh isn't interested in the usefulness of error. He writes about his errors because he wants to confess them, and because he's interested in his inner life and how it's been changed, over time, by making mistakes. When he gave his lecture to a roomful of neurosurgical colleagues, he writes: “It was met by a stunned silence, and no questions were asked.”
The airline industry has a remarkable attitude toward mistakes by pilots. The mistakes are reported and the violator is retrained and reexamined. In medicine, though, we largely hide our mistakes, if we are able. Some of that is due to pride, and some to fear of malpractice claims. A systematic open attitude with investment in retraining would probably be more productive in helping further better medical care.
I view these articles as “seeds” that drop in the soil and germinate. Although it may take years or decades, I believe these trends will grow and become influential. Shouldn't patients know that doctors die differently and why? Shouldn't the public be aware that there are better options than those commonly offered to terminally ill patients? Don't we, as physicians and nurses, have an obligation to inform people of the alternatives they can choose from that make sense? Don't we have a right to learn of medical errors and be assured that they are taken seriously by hospitals and professional societies?
You know my answer to these questions.