The patient was a 70-year-old woman who’d been struggling with two different types of cancers for at least eight years. For most of them, she’d been on dialysis, first every three days, and by the time I met her, every other day. Her husband had been taking excellent care of her through this long ordeal. By the time we met, a few months before she died, it was clear that she was in the very last stages of her illness. Anyone who looked at her could see that this was a dying woman and that she had very little time left. A reasonable and compassionate physician would have suggested that she be admitted to hospice care to make her comfortable and give her better quality of life during her last days. Unfortunately, it does not seem that she had this kind of physician. Instead, a cardiologist had recommended open heart surgery to fix her heart problems and her husband, who apparently was in a let’s do everything we can mode to the bitter end, agreed. Although the woman told friends she was ready to go, she did not go peacefully. This frail woman whose kidneys had already failed, whose heart was failing and who could barely make it across the room was subjected to an operation she should never have had, and that no physician in his or her right mind should have ever recommended or agreed to perform. And what happened. She spent most of her last days on earth in an ICU, tethered to a ventilator until she finally was allowed to die.
When I heard the story of this woman’s final days, I was horrified but sadly not shocked. These stories abound. I hear them all the time. I have seen physicians examine patients like this and recommend aggressive, invasive, highly toxic procedures that the patient will never survive. It’s a though they are so focused on the patients’ failing organs that they simply can’t see the people in whom those organs reside. Sometimes the physician wants to know what’s up, to definitively determine what’s going on. (The patient is dying, you feel like saying, that’s what’s going on). Sometimes they claim they are responding to pressure from a family member in denial. Sometimes the doctor can’t let go, or feels like the patient’s death is somehow something that’s happening to the doctor rather than the patient (the interpretation is that the doctor has failed, not that we all have to die sometime). Our cultural obsession with miracle cures and last ditch efforts complicates matters. So does our definition of the role of the doctor as curer rather than healer. And, finally, the way doctors and hospitals are paid makes matters much worse. Doctors are not paid to help patients deal with death when it’s inevitable, they are paid to use the hammer, which as the saying go, turns the patient into a nail, pounded deeper and deeper into the wood of torturous medical treatments even when everyone really knows how futile they really are. Each operation a physician performs is more thousands of dollars in the bank. Each patient who doesn’t survive the operation, but also spends their last days in an ICU is more money accruing to a hospital. Hospitals don’t get rich on hospice but they do get rich — or at least get by — on unnecessary operations that end like this one, with days spent on a hospital ward. Because of the payment system and its perverse incentives good doctors and good hospitals do bad things to good people who also don’t understand their options and are not helped to do so. And of course, endings like this are what are driving health care costs through the roof. To be tortured to death, Medicare –not to mention the patient’s family and any other supplemental insurers she had– spent hundreds of thousands. And for what?
As I listened to the story of this woman’s end — after hearing countless others like it — I have come to the conclusion that in the current environment hospitals and doctors seem unable to stop themselves from delivering torturous treatments to dying patients. In spite of every effort to encourage patients to use hospice care — on the part of hospice practitioners, not Medicare or insurance companies — hospice remains poorly understood and vastly underutilized. This woman was put on hospice three days before she died, rather than three months or years. (I know, hospice only lasts for six months, but people can go into and out of hospice if they survive longer). Anytime anyone mentions the idea of paying doctors to have serious and systematic conversations with patients about end of life care, Republicans cry “death panels.” Apparently torturing people to death is just fine with them, but allowing people to die in comfort and with dignity is not. So I have a proposal. Since Republicans adore helping the rich get richer why not just pay doctors not to do the unnecessary operation. After all, we pay farmers not to plant their fields, why not pay doctors not to perform operations that will torture patients to death. I am not quite sure how all this could work out, but I have a few ideas. The oncologist or other physician sends a patient to another specialist to figure out just how bad things are and the specialist would like to recommend this or that procedure, operation, whatever. It is clear that the patient has hardly any chance of surviving. So a panel of experts makes that determination, tells the physician they will get paid not to do the operation, and someone other than the physician steps in and explains how the patient can be made comfortable during their last days. Maybe, some of the money going to the physician could be used to finance excellent end of life care. Instead of a finders’ fee it would be like an ender’s fee. The patient would be spared a horrible death, the doc would get the money, and the system would save a ton because the doctor’s fee is only a tiny portion of the incredible costs that result from these kinds of failed treatments. Like I said, its the health care version of current agricultural policy, where we pay farmers to save the integrity of their land. In this case, we’re saving the patient from a terrible death and saving money at the same time.
Of course, I know this will never happen and shouldn’t. But what should is not only hospice care but effective primary care. When I hear a story like this what I want to know is where was this woman’s primary care doctor? Sadly, I can guess at the answer. He or she had probably been sidelined years ago when the woman went to an oncologist who became the de facto PCP. Although she had what was clearly going to be a terminal illness (two of them in fact), the PCP probably had little contact with the patient. The oncologist and myriad specialists — in this case nephrologists, cardiologists, and who knows who else — took over. Without an effective primary care system –not to mention palliative care system–she was at the mercy of the let’s do everything folks without a countervailing perspective and voice. Indeed her ending was practically pre-determined. I am, of course, outraged by this ending. It should never have happened. In many other countries, ones with sane health care systems, she would probably have had a much better ending. There is no reason why patients cannot have such endings here. So maybe my idea isn’t so crazy after all. Maybe its only the logical conclusion of the path we have taken in a system in which health care is just part of a system designed for profit not patient care.