Saying No: Ethics and Good Reasons for Denying CareNovember 9, 2015
Conscientious objection and referral: words, principles and compromise.October 19, 2016
Atul Gawande. Being Mortal. Medicine and what matters in the end.
In the introduction the author describes an early patient of his patient he calls Mr Lazaroff. Mr Lazaroff had widely metastasised prostate cancer. He was dying and dying imminently. However he was offered a palliative surgery that might have the effect of slowing the progress of the disease, but only marginally, and which might also help relieve his pain. However, the downside was a highly invasive surgery from which it was vanishingly unlikely that the patient would recover.
The patient chose the surgery. And the expected outcome occurred. The patient did not recover well and died within a couple of weeks. The author says: “I believed then that Mr Lazaroff had chosen badly and I still believe this.” He chose badly not because of all the dangers, but because the operation didn’t stand a chance of giving him back what he really wanted, his continence and the strength of the life he had previously known. He was pursuing little more than a fantasy at the risk of a prolonged and terrible death, which was precisely what he got.
This book is about trying to avoid Mr Lazaroff’s fate. The author believes that modern medicine has got dying wrong, that it has changed the way we die and medicalised it without really understanding what was happening. The result is that far too many people pursue completely unrealistic hopes at the end of their lives and end up missing out on what the author calls the “dying role.” He also argues that this problem is compounded by medicine that the practice of medicine end is complicit in this travesty of death and dying.
It used to be that people would be relatively well then get sick and then die quite quickly. The pattern has changed. Now it is more likely that a person will become progressively debilitated. The person will have a series of small crises, each one leaving him or her less well-off, less mobile, less active, than he or she was before. In addition there is the inexorable course of ageing. We do just wear out. The combination of these factors is that more and more people are living longer and longer in worse and worse condition. Add to that the shift in demographics which means that people now live alone after their children have left home for, potentially, decades. Decades where they are independent and self- directed. That loss of independence that comes with aging comes hard.
The fundamental changes in the nature of medical care that occurred over the last 50 to 70 years have meant the proliferation of hospitals and our ability to do far more and to extend the lives of far more people. However the problems of poverty and the problems of lack of family connection are not solved by increased medical care in hospitals. Hence the arrival of long-term care facilities. They are the repositories of people who do not have the capacity to live alone and whose families are unable or unwilling to take them in. Or indeed where the resident is unwilling to be cared for by a family member.
There are changes in long-term care, changes away from an institutional warehouse model which seems in many cases just a way of caring for people’s bodies. There is a shift towards methods of “assisted living.” This approach requires, in the first place asking people what they want. There is evidence that if you ask people what they want their answers vary depending upon their circumstances and, of course, the stage of life that they are at. This means that the hopes and expectations of elderly people, the desires that they have for their own lives, are completely different from the desires that they might have had as younger people. Horizons contract and the realm of the possible become smaller. But this need not be a bad thing if we can reconfigure the structures we create to match the things they want. If so, there is the potential for people to live rich and full lives in the way that they choose for longer and longer.
We have lost the ability to die. In the frantic rush to extend life, to find another cure, to keep going to keep ‘fighting’ we have missed the point where it is possible to say goodbye to say what you want, to play the dying role. This means that people are not able to put their houses in order. They are not able to say the last things that need or want saying, instead they are strive for an impossible goal. The result is a loss that everyone feels. And this emphasis on an unattainable goal is fed and nurtured by the practice of medicine. Physicians are sometimes, perhaps even often, unable or unwilling to speak the truth. Many people find it very difficult to identify that this really is the end.
There is evidence that patients also end up accepting aggressive treatments, that perhaps they believe won’t help, but which they accept in order to please their families.
If one genuinely understands that a person has reached the end, and understands that further aggressive treatment will not only, not prolong life, but may indeed even shorten it, and accepts even if the treatment does extend life it does so at a terrible price of quality, then one is free to do something better, to spend that time in far more worthwhile ways. An acceptance that these things are true means that one is free to focus at that time in a person’s life on the things that are really important. Some families described this time as the best time that they have ever experienced. Because now they have time and indeed the necessity to concern themselves with the things that they are really concerned about.
Gawande finishes by saying that physicians have been wrong about the job of medicine. Physicians have imagined that the function of medicine is to promote health and survival. But he says it is not. It is really about encouraging well-being. And there I think is the question for all of us who work in the field of health care. What is “well-being,” how do we promote it, and how at the end of the person’s life do we ensure that that life can finish well-lived?