The thing about the very sick patients I see is that they are generally what might be called "medical train wrecks." They are very sick because they have had interventions over the years that have caused them to be dependent on more medical interventions. In some cases this means that they are alive when they would be dead otherwise, and in some cases medicine has allowed them to make more terrible choices in their lives and be subsequently more miserable than they would have been if forced to face the logical consequences of their behaviors. Often these two stories are played out in the same people. It is hard to take care of these people because they have had so much done to them, have taken so many medications, had so many complications that the landscape of caring for them is like a mine field.
I saw a former smoker whose lung disease was so severe that he couldn't stay out of the hospital for more than a week, and lived at a nursing home. His disease process had progressed to the point that he no longer was able to breathe off the carbon dioxide in his system and when this would build up he would become more sleepy and breathe even less. He also was prescribed strong opiate pain medications for his back and neck pain, worse because he stayed in bed all day and struggled to breathe, but which made him sleepy enough to not move or cough or breathe adequately. He was aware of how this worked, but unable to imagine life without pain medications for his numerous aches. He had been discharged from the hospital only a week before, on intravenous antibiotics through his nursing home which he was still getting when he returned. I suspect he had been on antibiotics for much of the last year, and these were the ones designed for resistant bacteria, which he probably harbored. I was probably the 100th doctor who had seen him and it was unclear what intervention I could make that would improve things at all.
I saw two people who were immigrants from very poor countries, but now in the US for decades. Neither of them could tell me about the medical history of their parents because their parents had never seen doctors. Both had end stage kidney failure, one had received a kidney transplant after 8 years of dialysis, certainly well over a million dollars of medical costs in 10 years. The US takes special care of patients whose kidneys have failed, usually finding money to pay for their expenses either from Medicare or Medicaid funds, or often both. The patient's own funds are almost always completely sapped as well, but no individual can afford long term kidney replacement therapy, which can run thousands of dollars a week, even without the decompensations that are so common in such patients. These were interesting people, but they had suffered physical pain as well as the shame of uselessness and dependence as America's often generous and certainly technological medical system kept them alive.
It may not sound like it, but I do respect these people and enjoy the opportunity to work with them. I also feel conflicting loyalties, because these, my patients, are part of a dynamic that wrecks opportunities for other people to stay healthy and alive. I just read an article from the US News describing how healthcare costs, specifically insurance for city employees in this case, resulted in a community budget that couldn't afford after school programs and struggled to support even minimal recreation programs. School kids collected thousands of pounds of old shoes to raise $6000 to save their after school activities. It is the work of an hour to spend $6000 in health care.
Many of the patients who find themselves in these dependent relationships with the medical profession are poor or old or otherwise disadvantaged, leaving them less able to make decisions about their lives and less able to advocate for their own wishes with healthcare providers. They are carried along in the flow of "this is what we do with people with your condition." Once saved by medicine, it is very difficult to take a different course.
I was feeling kind of sad about all of this when I found something in my email that cheered me up.
Unsolicited, in my primary inbox, was a letter from the Lown Institute. In the email they linked the article I mentioned a few paragraphs up about the school kids who had to raise money for after school programs because their community spent so much money on healthcare. I went to their website and was surprised to see that the group is full of super high functioning people interested in health, mostly doctors but also public health people and even the founder of the Panera Bread Company. Per their website "We seek to create and foster a new social contract between the profession of medicine, the business of healthcare, and civil society." What this appears to mean is that they are working with powerful people to move medicine in the direction of providing thoughtful and considerate care for the human beings who are our patients. The founder, Dr. Bernard Lown, is originally from Lithuania and practiced all of his life in the US. He invented the defibrillator, which has saved countless lives of patients who lose circulation suddenly because of a heart arrhythmia. He also won the Nobel Prize for starting the physicians group that became Physicians for Social Responsibility, which advocated against nuclear weapons. He is a well spoken advocate for really good medical care, meaning listening to patients, examining them and not doing stupid and harmful excessive testing or treatment. I would happily sit at his feet. He continues, in his 90s, to advocate for the right stuff, and I could probably simply link to his article which is beautifully steeped in over half a century of being a doctor and now a patient, rather than writing anything at all.
It is heartening for me to see that there are good, kind people with excellent minds who are outspoken and influential at the highest levels of discussion. People like Dr. Lown remind us to be doctors rather than highly educated data managers and test orderers.
Comments