When I first became a doctor, there was broad understanding of this fact. There was even a saying: “Pneumonia is the old man’s friend.” I am an internist who treated older patients. The saying means that there comes a time in life when pain, frailty, dependence, and dementia come together to make a life that is not worth living. That is why my writing is all about staying healthy longer.
Just think about it for a minute! I have a living will because of everything that I have seen. Let’s just consider the common disease Alzheimer’s. The MRI of the brain on the left is of a patient with Alzheimer’s disease. The one on the right is normal. You can easily see that the black spaces where there is no brain tissue are much larger in the Alzheimer’s related scan. Look at the triangular area in the middle. It is much larger in the patient with Alzheimer’s. There is no brain in that black area. The brain has shrunk because the nerve cells that make us who we are have died. There is no going back.
In the late stages of the disease, victims cannot care for themselves. They cannot feed themselves. They cannot dress themselves. They can’t take care of their own bodily functions. They don’t recognize family and friends. They can’t even turn over in bed and many develop pressure sores. Would you want to stay here like that? Not me. I have cared for people in that situation. I don’t want that for myself. My family knows and my living will says, when I get to that point, pneumonia would be my friend. I want comfort measures only.
If you don’t have a living will. If you don’t let your family know what you want; they may do everything they can to keep you here if you have advanced Alzheimer’s disease and you develop pneumonia. I have even seen patients like this in the intensive care unit. That is not for me. If you want to have a say in your health future, talk to your family and get a living will. Be sure the person you name as your healthcare power of attorney has the courage to enforce your wishes.
My mom was different. She reached the age of 94 and her mind was still sharp. She was frail. She could not live by herself. She had had enough. About two years before she died she told me that she was ready to go. I understood. There comes a time when the fight is just not worth it. The most loving thing my sister and I could do for my mother was let her go. My one regret is that my sister and I made a mistake that so many families make. We did not engage hospice soon enough. Hospice workers are experts at helping patients be comfortable in the weeks or months leading up to death. My mother could have used more help from them.
Professionally, I have too much experience with this. I sat down with many families and discussed terminal illness in a loved one . Of course, the final decision is with the family or if there is a living will, the person identified as the healthcare power of attorney. These are complicated, lengthly discussions. I never got paid for that time.
This is a great example of how politics has no place in healthcare practice. Politicians got in the way of legislation that would begin to solve that problem. “Sarah Palin's phrase "death panels" derailed proposed provisions of the Affordable Care Act (ACA) to pay physicians for end-of-life discussions with patients, a policy designed to make dying more humane, something all Americans desire.” “Palin's spokesperson pointed to Section 1233 of bill HR 3200 which would have paid physicians for providing voluntary counseling to Medicare patients about living wills, advance directives, and end-of-life care options.” Even now, about half of Americans believe that the government was establishing death panels and the ACA could “pull the plug on Grandma.” No, the ACA had provisions to pay doctors for something they should be doing. The idea of death panels has a lot of power because so many Americans don’t discuss terminal illness. They have not had a conversation with their doctor on this important topic. It is too easy for them to believe death panels are part of a health system that does not serve them. They experience dehumanizing treatment that does not meet their needs. Too many times when they do have conversations about their health care it is in professional jargon that families cannot understand. That just adds to their frustration and they are ready to believe anything. Death panels are believable because our system is so bad.
As the paragraph above says, a discussion with families using language that the family can’t understand; using language that is cold and technical is no help. We need doctors that who are empathetic and who use plain English. There is a lot of work and improvement to do on our side and until we do it, Americans will not trust us. That said, reasonable payment for effective conversations in this setting makes a lot of sense. As Abraham Lincoln pointed out, “ A lawyer’s time and advice is his stock in trade.” It is no different with internists and family practitioners. The discussion of care in the patient with a terminal disease is one of the most important in medical practice. An effective conversation in this setting is built on trust and it takes time. Payment for this time and the time that it takes to build a trusting relationship with your primary care team is essential for effective treatment for chronic and terminal diseases. We must work together to rebuild the trust between clinicians and their patients. American medicine has made some huge mistakes and it needs extensive change. Laws like the Consolidated Appropriations Act are facilitating that change. That is effective politics. “Death Panel” scare tactics are completely counterproductive. Please support changes in healthcare that make sense and ignore Chicken Little. We are all in this together.
My mother was a vibrant, active 91 year old woman who was still traveling independently with her best friend four months before suffering a stroke. Because of her previously excellent health, her physicians recommended surgery to clear the residual debris. She agreed and had a very successful outcome, including moving to an inpatient rehab center - walking, chatting, wearing makeup and worrying about how quickly her hair might grow back. Less than two weeks after her original surgery, there was another massive stroke that left her unresponsive and helpless. My brother and I consented to providing nutrition via feeding tube for three days to see if she might improve; however, nothing changed. We had no hesitation in withdrawing all life support because she had expressed her opinions on 'maintaining a body' abundantly clear for many years. I'm so glad we gave her that chance recover and equally glad we could assure a peaceful end to her very well-lived life.
Insurance reimbursement does not pay for the most important things: Doctors using their brains, and the lifesaving, life affirming therapeutic doctor patient relationship which ultimately reduces costs and use of resources.
IMO.