“Health nuts are going to feel stupid someday, lying in hospitals dying of nothing.”
In population health we talk a lot about improving the health of those with chronic diseases, preventing other diseases and keeping the healthy people healthy, but what should population health’s role be at the end of life? In the end, even if we are wildly successful at maintaining, improving or preventing diseases and conditions, we will still face death.
If the Triple Aim is better outcomes, lower costs, and improved health of populations, how should that be applied at the end of life? I believe its role should be in ensuring dignity, education and appropriate personal decision-making.
Over three years ago my father, a physician passed away. He had been living with Lewy Body Dementia, a form of Parkinson’s disease for almost two decades. When first diagnosed, he made clear to us how his disease would progress and what he wanted to happen at the end. No feeding tubes, no extraordinary measures, if he got pneumonia, he wanted no antibiotics. When his disease had really progressed and he was bed ridden in a memory care unit, post stroke and not always lucid, he did get that infection. The facility wanted him transferred to the hospital across the street where he would get treated for his pneumonia. While they were nervous about us not approving that based upon his Advanced Directives, they understood his wishes, worked with us and hospice and we made clear that we would not hold them in any way accountable.
The hospice service was fantastic as was the facility which allowed my mother and others to stay there with him. During this three weeks, we would take him outside when he was able and we were there with him throughout. It was a moving and gentle experience and I am happy to have spent that time with him, my family and some of his friends and colleagues. During this experience, not everyone in the immediate family was in agreement, or felt it was handled as they wanted, but they knew it was being done based on his clear wishes.
We all know the costs associated with healthcare at the end of life, but that is a secondary issue; it’s hard to say goodbye to someone you love. Knowing his disease and its course, we were able to prepare for a long time. Others have much less time to make decisions and say what they feel is an appropriate goodbye. This is why we should think of the how and what we want to happen for us early, and clearly discuss it with our loved ones.
Too often when the end of life is near, it’s not about the person reaching that end, but about those close to her or him, about their time with the person, perhaps their guilt, the belief that they need to do everything possible. While this may seem like the right thing to do, many times it just increases the pain and suffering of the person nearing the end of their life. In a number of instances, I have seen and discussed the guilt felt by those who had gone to great lengths to try to keep their loved one from death. The hospitalizations, intubations, amputations, feeding tubes, more doses of chemo. Hindsight is 20/20 for better or worse.
In fact, one of the things that influenced my father and his decision, was the death of his father. He had really suffered during the last 6 months as the doctors did this and that to (for?) him in an effort to try to keep him alive. My father had supported some of these efforts. They were not a good six months, certainly not six months worth living; in fact my grandfather on at least one occasion had stated that he was ready to die. But more was done. Back then there was little talk of options or hospice. My father sometimes spoke of his father’s last 6 months, at times with a tinge of guilt.
With advanced directives, we have come a long way, but there is still more we need to do.
If population health is about the full continuum of care with the patient at the center, we have to ensure that end of life decisions becomes part of the discussion. That people and their loved ones are educated about their options, given an opportunity to prepare for the day, and given the support to make the decision’s as they see fit. For my Father and us, his decisions made a world of difference and the hospice and memory care unit did an incredible job taking us through this difficult time. He died and left us in peace with memories of a great man, who was loved deeply by his family and still is.