Dying well…
Dr. J. first saw this link via Small Dead Animals. He read the article, nodded, and moved on. Then he saw it cropping up all over Facebook. Friends on the left and the right were posting it, so Dr. J. went back for a second look.
By way of summary, the author, a primary care physician, tells the story of an orthopedic surgeon who is diagnosed with pancreatic cancer. Not the Steve Jobs neuroendocrine incidentaloma that you can fight off for quite some time, but rather the adenocarcinoma that is typically discovered when you have 6 months to live.
The orthopedic surgeon, weighed the options, which largely suck, and made the judgment that the amount of additional time he might get would be spent in the hospital recovering, getting chemo and/or feeling lousier. So he essentially eschewed further medical treatment beyond comfort measures.
The author goes on and says that doctors tend not to die in hospitals, being coded by some intern who is more freaked out that he’s coding Dr. Professor Emeritus, rather than concentrating on good compressions, or vomiting in a bucket in the chemo suite. He then asks the question, “Why can’t all of us die this way?” and goes on to attempt to answer the question.
So what it boils down to is this. Doctors know how the sausage is made. We take care of people and understand disease for a living. We know what the prognoses are many conditions. It is no different than a car guy knowing what kind of tires to buy, or a chef being able to pick out good produce and cuts of meat for home at the supermarket.
In the case of this orthopedic surgeon, his number was punched and he understood that. He did the math and realized for himself that the quality of life/quantity of life ratio was more in his favor doing nothing. In the case of Torch it’s the same deal. In other words, if you have a terminal illness with no good treatment options, your options are to flog away to get nominally greater quantity at some cost of quality. Do a clinical trial for a combination of altruistic and not altruistic reasons. Or third, palliative and comfort care. These cases of initial diagnosis with an illness where you have 6 months to live are very rare.
What the author doesn’t discuss are illnesses that aren’t as grim.
Many people die suddenly, and in their sleep from a heart attack, arrhythmia or some other such issue.
For folks not that lucky they have a chronic illness that is managed, and ultimately plays a role in their ultimate demise. Even then, a subset of them die swiftly and unexpectedly from an unanticipated complication.
For example, half of Americans either die with or from cardiovascular diseases. The number one reason for hospitalization in the elderly is congestive heart failure. CHF is a common final common pathway of both coronary artery disease and hypertensive heart disease. Patients can have a heart attack, and then develop CHF years later. Once diagnosed with CHF, (with wide error bars) life expectancy can be from 5-10 years (roughly). Some patients are good transplant candidates, but most aren’t.
The point is that these patients aren’t necessarily taught about prognosis. No you can go along with CHF for years, and eventually, the water pills stop working, your symptoms get worse, you may begin to have arrhythmias. Hospitalizations for exascerbations of CHF become more frequent. In other words it eventually becomes apparent that the patient will soon no longer be of this earth.
The same can be said for emphysema. It behaves similarly. It’s a chronic illness, it’s managed, it becomes harder to manage, then it can’t be managed.
Now, intermediate stage breast cancers can be managed for over a decade and up to 15 years before they progress to the point of futility.
Dr. J. believes strongly, that with diseases like this, early conversations educating the patient allows them to participate better in the decision making process as management goes from the early manageable stages, to the later less manageable stages, and ultimately to what the author calls the futile stage. The initial discussion of prognosis, and follow up conversations about how the disease is progressing or not progressing ultimately the final discussion that Dr. J’s used every arrow in his quiver.
This is critical because none of us want to be flogged when it’s futile, but many of us do want acute reversible bumps in the road to be treated while they are reversible. One patient was waiving goodbye to everyone in the ICU like he was going on a cruise when he was being discharged from the hospital for home hospice.
Now let Dr. J. be perfectly clear. He has not broached the topic of euthanasia, or the British NICE Death Panels in this essay. As a good Papist, he does not actively hasten the natural deaths of any of his patients. But, when management becomes futile, he is frank and forthright with his patients and their families, and for his patients, he has them prepared to make informed decisions when futility has been reached. His goal for his patients is to make sure that they live well as we manage their diseases, and when we can no longer keep disease at bay, insure they enjoy as good a quality of life with the time they have left at the end.