Readers share more of their intimate experiences:
This string hits a deep chord. My father died this fall at 81, after a steep decline in health over a couple of years. As difficult as it was to watch, it was also the last example he gave us of what it meant to be a great doctor. My dad essentially became his own last patient - paying fastidious and sustained attention to every detail in the care he was receiving. He was as active a patient as any could be. He knew exactly what was happening. He fully understood the path his body would most likely take. He used a lifetime of knowledge, skill, and instinct to make the best decisions he could on everything from what he ate at every meal, to whether to undergo procedures that his physicians offered as possibilities along the way.
His goal throughout all of it was the same as it was with the thousands of patients he cared for in his very long career as a physician: to extend life with the least amount of suffering.
In the end, he died at home and in his sleep. No end of life procedures, no tubes, no hospital administrators. No one can say whether he would have lived longer had he undergone some of the procedures he had eschewed. I doubt it. But what we do know is that he was in control of those decisions until his last breath. It was a great example for all of us.
A reader offers the other perspective on end-of-life care:
My mother-in-law died last Monday after a long bout with many illnesses. She had a rare form of cancer, but other health problems as well. It was so sad to see her go, so slowly and on so much morphine.
But for whatever reason, for years the doctors kept telling us she was going to die when she wasn't. Just as one example of many, a couple of years ago, a surgeon opened her up and was shocked at the state of her liver – cirrhosis, she's got months to live. But since no one gave up, it turned out after much consternation that she had had a virus as a child that had messed up most of her liver, but she'd been living with the bit that worked for over 60 years. Crisis averted. Just a month ago they took her off life support after a bad spell, but she kept on living! Went back home in a couple of days. I must have picked out clothes for my growing son to wear to her funeral six or seven times over a few years. I'm so glad that none of us gave up, because we had that extra time with her.
My mother-in-law and I used to say, every day we get is a blessing. And through a lot of effort, she made it until just after Thanksgiving. We all went to her home, a large family gathering, and everyone got to talk to her. My last sight of her alive was surrounded by her five great-grandchildren, all under 5, and my 7 year old, the last of the grandchildren. They were all reaching out to her, telling Mimi all about this and that, and she was reaching out for them, cooing over their stories.
I keep thinking of all the times we had to give up or go on, and I'm sure glad she went on as long as she possibly could. And despite feeling awful and wanting to be with her late husband, I know she was glad to hang on too – we talked about it often. "Every day is one more day," she said, and I noticed, she didn't mean good or bad necessarily, just another day given by God for His reasons, and she was going to embrace that.
Another doctor's loved one:
It was fascinating to read Hitchins' account of the indescribable, searing pain of his highly experimental treatment for esophagael cancer so soon after reading Ken Murray's "How Doctors Die." My husband, like the much older physician described in Murray's piece, died earlier this year of metastatic pancreatic cancer. It happens that clinical trials with proton therapy were being done for pancreatic tumors (albeit on the other end of the pancreas from that where my 51-year-old husband's appeared), but he chose not to seek out any kind of clinical trials once the medical verdict was in. Both of us knew as far back as when he was in medical school that we would both opt for being DNR in anything like the medical circumstances he faced at the end of his all-too-short life.
Last night I happened to give a talk to a large group of my physician husband's colleagues about how doctors treat doctors who are dying. An excerpt:
My husband, a doctor, went gently at a very young age. I think there is a vast difference between the doctor as patient and the doctors who treat a dying patient who is a physician.
At a Boston teaching hospital where my husband was not known and tended to be addressed as “Mr." not "Dr.," we could not help noticing the ethos was different: we were always being presented with high-action verbs, aggressive options, new things to try, new places to go. He didn’t want that. He wanted what was reasonable to try, and no more.
When his profession was known, he tended to be treated as a patient as if he already knew everything a medical expert in any field possibly could know. Doctors did not bother explaining things. And he almost always did know and immediately understand all of the medical and technical minutiae, and researched what he didn’t already know. It seems to me that to my husband as the patient, the most unfair part of this approach of assuming he knew everything as a physician was at least two-fold: first, it put him in the position of having to devote considerable time and energy to being the doctor explaining things to me, our children, and our non-medical family and friends. …
Second, treating him as a physician first seemed to me to impose on him a burden to do more on his own, to coordinate his care, even to remember to collect and transport discs with his scans—in short to be something more than a patient, when being a patient alone in such circumstances was more than most people could bear.
And with a very serious or terminal illness, both the word clouds flying between a physician patient and treating physician, and the things left unsaid because the patient is assumed to know them, can create additional problems. It’s overwhelmingly likely that in these cases eventually a non-medical family member like me will need to take over under a health care proxy, and needs to truly understand both the medical issues and the patient’s desires and make sure they’re carried out when he can’t. This requires being included in and led through some of these technical conversations. When having these conversations, doctors can be compassionate without giving false hope, and be realistic about options without being heartless.
Explain to patients that entering hospice isn’t giving up hope; it’s acknowledging the reality that your hope is no longer for a cure. Appreciate how much you know as physicians, explain things to family members who are likely to have no idea what the dying process is going to be like, and know how helpful it can be for your patients’ families, as they go on, to have been active participants in end-of-life-care for the people they love.
The Dish 