Many years ago a dear family friend came to me to ask “a medical question.” When we were in private he explained his elderly mother seemed to be near death from a variety of causes, though none was obviously “the one thing” that would predictably end her life.
His question was that she was in significant distress from pain and the family, as care givers, had been given wide discretion in the administration of her pain medication. However, he had noticed that her already shallow breathing, due to COPD, slowed even further when her pain lessened. He was concerned that she would quit breathing altogether if he gave her adequate pain control.
“You not asking me a medical question,” I finally responded. “You’re asking me an ethical question.”
“I’m not asking for permission to overdose my mother,” he said looking into my eyes. “I’m asking if it’s OK to control her pain, even if it ends her life.”
“You know what my answer is,” I said nodding slowly. “Your mom has always been very dear to me and my wife.”
These are tough questions at the interface of medicine, ethics and law. Several states, including the one I reside in, have recently tried to make it easier for patients to end their lives through medically assisted suicide if they are terminal. As you can see from the above case, I’m not without sympathy to patients and their families who are looking for answers in these tough situations. And in a perfect world, patients and their doctors can handle these sensitive issues outside of the glaring lights of the law. But I fear that this kind of legislation can open a Pandora’s Box of issues that cannot be easily contained once released.
At the beginning of our careers, all of us took a variety of oaths that committed each individual to the task of helping save lives and reducing suffering. But the devil can be in the details. What about situations like the one above where reducing suffering might actually shorten life? The answer is that we try, as best we can, to put the patient in the driver’s seat on this decision. But reality is that this is usually a farce. Patients frequently say that they would rather end their lives rather than suffer. But in the moment, they may not feel that way. Are they bound to decisions made in the calm when they are in the storm?
Moreover, who has perfect information? I cringe when I hear someone say that their doctor told me they have X amount of time to live. That information, almost by definition, is wrong for at least 50% of patients. It’s fear inducing and discouraging. When physicians should be cautiously encouraging, instead we are purveyors of doom and gloom.
Don’t get me wrong. I don’t hesitate to tell patients the truth about a bad diagnosis, even in the ED. Many times they thank me because they feel that they have only been given one side of the story by their treating clinician. But I always temper the bad news with a healthy dose of hope and encouragement to fight for their lives. We don’t know the future. None of us. We know that we will all pass some day. But it seems like our job is to make our patients as comfortable as possible as long as possible.
There is a twist on this conundrum that I have faced all too many times in the ED when an elderly patient is terminal. One side of the family wants the patient to let go and the other wants them to fight on. Many of my long time readers will remember the story of the patient who had two daughters at the bedside as the decision was being made to intubate their mother, a long term severe COPD patient. One was encouraging her mother to decline the incubation, embracing her death and release from suffering. The other daughter was encouraging her mother to fight on, saying she had been intubated several times before and had always come through it. She accused her sister of guilting her mother into dying because there was a house that the other sister wanted. I informed the patient that it was her decision and waited for her to decide her own fate. She seemed to go back and forth between the arguing sisters. Finally her mental state failed to such a degree that she could no longer make her will known and passed into unconsciousness and eventually died.
In the right to die states, what will happen when a patient takes a fatal dose of something, but a disagreeing family member calls 911? If the patient is resuscitated, will we be sued for wrongful life? Will we stand by and abide by the patient’s wishes while being threatened with suit by the patients family members, as I was with the dying mother?
The right to die calls into question the reason the legal system called upon doctors to intervene when a patient wishes to end their lives. The legal presumption is that anyone who would want to end their lives must be lacking in the mental capacity to make such a decision. Because no rational person would elect such a course. But to make this exception appears to be simply making the case for “rational suicide”. What then can we determine about those in the mental pain of severe intractable depression? Would these patients eventually qualify under this rationale for relief through assisted suicide? Of course a depressed patient is not the same as a patient dying of stage IV pancreatic cancer. But it could become a very slippery slope. And as they taught us in law school, it is the worst cases that lead to the enactment of bad law.
As bad as all these situations are, there is one that is so frightening that it borders on causing paranoia. We all know the old adage that you spend the vast majority of your lifetime healthcare expenditure in the last six months to a year of your life. So as the cost of care increases, we all know that the simplest way to decrease the nation’s total health care cost is cut that last six months short. And this doesn’t matter if insurance is the payor or it is the government, such as a single payor system, there will be incentives for the living to shorten the lives of the suffering. Then the decision will no longer be in the hands of the patient. Sound farfetched? What will we do as a nation when we are faced with treatments that we simply cannot afford to provide to everyone who needs them? Will the only people who receive such treatments be those wealthy enough to afford the kind of insurance that will cover it? Or, when faced with such a decision, will we default to not allowing anyone to avail themselves of such? Will there be a fiduciary duty to die when the cost of living cannot be shared equally?
I don’t have the answers to all of these questions. I’d love to hear your thoughts. But I suspect that we are best served when we don’t try to handle every situation with a law that would only fit a few ideal situations really well. Isn’t that why we have human beings with real feelings administering medicine instead of robots?