As congress, advocacy groups and policy initiators continue to unravel the implementation of and/or tweaking of healthcare policy it needs to be kept in mind that living breathing people have decisions to make NOW on their health. They can’t wait for these groups to get their act together. This reality really struck home one evening recently. I stopped by the home of my retired parents and quickly smiled as I encountered sitting at the kitchen table my Dad (a Cuban family practitioner and surgeon) and an old family friend (a Cuban Pediatrician) who were DEBATING with traditional Cuban gusto, healthcare issues in the US and of course abroad.
The hot debate was on the ability of the patient to choose and determine their treatment regime. Let me set the stage. I sat at a table over dinner listening to my father, 81, alongside with my mom, his friend Dr. Gomez, 77, and Dr. Gomez’s wife, a retired nurse. My Dad continues his discussion “yes, it is now true that at 81, Medicare will not pay for my PSA testing,” he explains further “because the reality is, if you develop prostate cancer in your 80s and beyond the likelihood of you dying from that diminishes.” However, he adds “instead, if you develop a tumor, undiagnosed and left untreated eventually you will develop pain.” The pain of course provides a heads up that something is wrong – like a tumor. He explains that “the developing tumor will eventually ulcerate, get infected, and then maybe Medicare will pay for the hospitalization to treat the infection.” It would appear that within the numbers perhaps the risk of needing dollars to treat an infection maybe below the cost of preventative measures within the general population.
Dr. Gomez, a man always in good spirits, humorous, and never without a smile on his face is one of the most upbeat individuals that I know. Begins with his current health issues he chimes in with “Medicare tells me that I am too old for a heart transplant and surgery that will provide blood flow to my right foot.” He further explains “yes, I am talking to my doctor waiting for approval from Medicare, once my foot gets bad enough to eventually amputate.” In fact, his wife, another gentle kind hearted soul, adds “Oh yes, I have been in contact with Marion Joy working on getting him a prosthetic device and physical therapy for him upon removing his foot.” The two doctors of course have a side bar discussion about healthcare in Cuba and how decades later Castro is still fighting this revolution for a better life for Cubans. In spite of it all, they quickly conclude that their options in the US are significantly better.
Dr. G in his good form simply adds “listen, I have always been a happy person, I don’t need my foot to love and enjoy being with my grandchildren.” I pause and look at this perfectly content person, and listen “I would like to think my life still has value.” A heartfelt pause at the casual nature of two very self-aware physicians understanding the demise of their own health and the impact of not receiving treatment of which they would have provided to their own patients 20 years before. It was unsettling to think that they really understood the debilitating nature of their respective disease processes.
This raises a great ethical question? When do we begin to tell a patient at any age that the notion of medical necessity and approval of treating you is actuarially impacted by the potential efficacy of an outcome? And who should be making these decisions? In hard cold English – we are being told that it appears you are going to die soon, so we should just hold off, cut off and preserve resources. I try to imagine Dr. G and his wife having matter of fact conversations of the best time to amputate his foot. Ultimately the surgery to correct the blood flow was not approved and an appeal was filed. The denial of surgery was in essence a death sentence and gradual death of a limb. Dr. G retorts “the reality is you know, I can be happy without my foot. If chopping off my foot gives me more time with my grandchildren then so be it.” My mom of course simply noted the obvious; her mother lived to 103 her sisters are in their 90’s.
Back to the debate among the two retired doctors, “patients are losing their right to choose their own healthcare treatment plan” and “doctors are inhibited from focusing on the best treatment plan for their patient.” My own healthcare experience notes a key distinction that consumers do not understand, “how we manage a patient financially is critically different then how we manage a patient clinically.” These two concepts are typically NOT separated and rarely understood by patients and the employers who fund their health plans.
I really do believe that healthcare should be patient centric. I have had patients who have reported that they would rather die than ever have their foot amputated. I reflect today on this from an ethical perspective. How do we value the life of a 20 year old, 70 year old, and even a centurion? What are we doing to make sure that our changing policies do not diminish the patient’s right for self-determination and participation in the medical decision making process. Ultimately, the patient’s desire for a particular outcome should matter. I recall the life of my 103 year old grandmother; not one day passed without her being a contributing member of my family, thus age is not a determinate of what you can do with your life or your contribution to others. As I write this blog entry I received notice from a sibling. Dr. Gomez died yesterday, two weeks to the day from our lively dinner conversation waiting yet again for approval of his treatment. Dr. G you will no doubt be missed by many and yes every moment of your life had value.
Bottom line: As the US Market continues to define healthcare, we need to not lose sight of the patients’ right for self-determination in the medical decision making process. There are real people out there, your parent, grandparent, sibling, being affected.
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Rebecca S. Busch, RN,