I had three immediate choices of what to do this morning.
1. Go to the Quilcene Fair with my daughter, her friend and another mom and an almost 1 year old.
2. Go on the Victorian Historic House Tour, a yearly fund raiser for the local hospital auxiliary.
3. Go to visit a patient that I have known for about eight years who will probably die soon of heart failure.
Which did I most want to do?
3. Visit my patient and she is a friend too.
At this point, with the present technology, we doctors CAN’T keep people alive on a machine. We might be able to prolong life some. Hours, days, weeks. The case where someone can stay alive on a machine is actually exceedingly rare, and they will NOT live forever either. Eventually people die.
I visited my lady at home. She looks rather frail and awful but she is coherent, recognized me and we had a lovely visit for nearly thirty minutes. She has heart failure and has outlived all predictions by years. Heart failure is pump failure. The heart is a pump made of muscle and is supposed to pump out 55-70% of the blood in the left ventricle with each beat. If it pumps less than that, the person has heart failure. My lady was down to 17% at one point and has needed oxygen for years. It will probably not be her heart that is the final problem: her kidneys are failing more and more. We are getting to the place where the balancing act becomes impossible. If we use medicines to make her heart pump adequately, then her kidneys fail. If we fix the kidneys, we lose the heart. If the pump isn’t working, the fluid builds up in her lungs and that feels terrible. Kidney failure slowly and gently lulls people to sleep; going to sleep until one does not wake up is a farewell with much less suffering.
I was very pleased to be able to visit her. She has lived far beyond expectations because she is smart and stubborn, comes to the hospital when she is sick, and has single payer insurance: that is, medicare. We spent much of the visit talking about the political system. She wants a single payer system for everyone too and was glad to hear about the Mad as Hell Doctors.
I called the doctor who told me that my lady was worsening and thanked her. She asked if our patient would make it through the weekend. I said that I thought so, but since she is refusing lab work, we don’t really know. She might be worse tomorrow.
There seems to be fear that extending medicare to everyone will mean that “granny will die from refusal of care.” Granny dies now. Everyone will die eventually. I am hopeful that I have many years yet, but none of us know. The fear that care will be rationed ignores the concerns that I have about the end of life: we don’t discuss it and so there is enormous fear and confusion; and that some of the treatments add only hours or days or weeks at enormous cost.
When I first moved to Port Townsend, I was taking care of many elderly frail sick patients. I went to our internist, Dr. L.
I said, “I keep seeing very ill patients in their 80s and 90s that have pulled through THIS hospitalization, but that I think will probably die soon. They and their families don’t seem to know it. What should I do?”
Dr. L. said, “You do them a great favor if you tell them. If you have a frank discussion with them, they and their families can make decisions and have a special time. Doctors do not tell patients often enough.”
Since then, I have had that discussion many times. It is never an easy discussion but it is important and feels right. I say that I might be wrong and would be happy for the person to live 10 more years and prove me wrong. We often discuss how much care they want and whether they would want to die at home. If we can have the family in the discussion, all the better.
Once I had a call from the daughter of a patient whose name I knew. The patient saw my partner. I said, “Forgive me, but I know your mother’s name and I heard that she was dying.”
There was a long silence and the daughter said, “I wondered if she was, but no one said anything, so I thought I must be wrong.” The daughter had nearly called an ambulance because she was afraid her mother was uncomfortable, but she also knew her mother did not want to go back to the hospital.
We were able to discuss what was happening and how to keep her mother as comfortable as possible. The daughter was to call me back if they needed transport to the hospital to ensure that her mother was comfortable. The call, however, was enough. Her mother died at home within 48 hours. We had talked about kidney failure and how the breathing changes near the end. The daughter was frightened. She later thanked me for explaining what was and would happen.
We all need to speak up about death. There will be less fear and better care if we can speak.