WHY DID I NOT GET MY TRANSPLANT?
I recently accompanied my wife on a visit to her primary Doctor as a follow-up to an event that required a trip to the emergency room. When her Doctor entered the examining room, he was followed by a young man in a white coat. I did not recognize the young man and I asked Dr. K. to introduce him to us. He was presented to us as a Pre-med student. This did not come as a surprise to either of us. Dr. K. knows both of us welcome students of the medical arts to observe him as he interacts with us. These opportunities have never failed to be anything other than pleasant and instructive . When the medical business ended, Dr. K. asked us to tell the student what we expect of our Doctors as a patient. We did our best.
The context of our replies to the student is that of seventy-nine year old persons with increasing need of medical services as we approach the end of our lives. Our current medical needs are what I believe average for our age group. Nothing very out of the ordinary for either of us. We visit our Doctors on a regular basis and have come to know them well. My wife and I trust our Doctors and believe them to value us as persons as well as patients. As one might expect, our replies to the student were hurried and incomplete, leaving me, at least, with the desire to express my thoughts on the subject in a more considered way. I am composing this piece with the idea in mind to say here what I would have said to the student if only we had more time. Here goes!
I feel strongly that the doctor/patient relationship must be a collaboration between equals. Patients have a different set of responsibilities than that of the doctor, but each must address their responsibilities and actions with mutual respect to make sure mutual goals and favorable outcomes are achieved. Patients must recognize and acknowledge the clinical experience and knowledge of the doctor by following the doctor’s treatment plan as prescribed. For their part, doctors must take into consideration the patient’s desires and concerns about effects the prescribed treatment will have on the patient’s life. Patients and doctors equally must strive to cope with the many conditions that can adversely affect the doctor/patient collaboration.
As I have grown older, I have become more aware of my certain mortality and this has led me to become as concerned about the quality of my remaining life as about the length of my remaining life. Doctors must take time enough to fully comprehend the patient’s feelings before the balancing of a treatment’s good and bad effects is undertaken. As an example, in my case I have experienced prostate cancer, a heart attack, and have Parkinson’s Disease. I have the common chronic conditions of high blood pressure and elevated cholesterol. These conditions have left me the legacy of ten drug prescriptions per day. I trust my doctors and I follow their instructions carefully. The adverse effects and interaction effects leave me in a state where I feel very sleepy all day. Not a good state for a still vital 79-year-old male to be in. Not good at all! I am very aware of the difficulties that patients and doctors have in addressing the quality of life issue. My personal situation has made clear to me how important it is for doctors and patients to come to a mutual understanding about the quality of life issue. If they get it wrong, they will find little time left to do it over.
End of life issues are a large problem for the elderly patient. Once patients arrive at the life-point of knowing their life will end soon, their doctor-needs shift from “keeping the patient alive” to “ensure a comfortable death”. There-in lies the rub! In my opinion, doctors appear to lose their professional interest in a dying patient because they are untrained in the death process; they do not know how to manage their patients death. Dying patients, however, are frightened by their ignorance of the death process and what is going to happen to them as they die. Add the patients attitudes about after-life to this mix, and you get a sad stew indeed. My experiences, as my parents died, will serve as good examples of the problem of the dying process for the elderly.
My Father was the first to go; he died at the age of 86 as a result of a series of strokes which left him in a coma. My parents were very wise in discussing what they wanted to happen (and not happen) as they died. This discussion was on-going with our entire family over many years. We knew what they wanted and we felt enabled by this certain knowledge. My Mother was like a rock in her determination to carry out my Fathers wishes. As my Father wished, my Mother directed that all artificial means of life support be withheld when my Father became completely comatose. During this period, my Father’s doctor faded from view. This at a time when our family sorely needed support from him. At one time, the night Charge Nurse took “pity” on my Father and started the unwanted life support for my father in contradiction to my Father’s wishes. When my Mother found out, all hell broke loose! She became the proverbial angry wife protecting her mate of 65 years. After that scene, my Father was allowed to die as he wished.
My Mother lived for 10 years after my Father died. She lived by herself as she wanted until the family persuaded her to move to an assisted living residence. She thrived in that community as it was very supportive to her needs. About a year before her death, a hernia repair she had done when she was a young woman became infected and in spite of the best efforts to avoid it, it was decided to end the infection through abdominal surgery. Even after the risk of an adverse outcome was explained to her, she wanted to go ahead. I was not surprised. The surgery seemed to go well at first. Shortly after she returned to her home she rapidly went downhill. The paramedics were called and my mother was taken to the hospital. She was in a coma and could not speak for herself. It fell to me, the oldest son, to speak on my Mother’s behalf. I was joined in this by my brother and two sisters. We were asked, in effect, to decide if my Mother would die or if she should have a chance for recovery. We chose life. My Mother survived the septic shock and when she became rational she expressed her disappointment in me for my choice! That’s my Mom: a very direct speaker. In her mind, her wishes had been ignored. She was right, they had been. It did not take long for the effects of the septic shock on her body to prove how right she was. She could no longer take care of her needs on her own. My mother was placed in a facility so she could receive 24 hour care. It was rough on our family, but my Mother eventually forgave us. My Mother experienced a series of infections that required a hospital trip each time. My Mother persisted in expressing her wish to be left to die peacefully and her family (mostly me) failed act accordingly. During what turned out to be her last trip to the hospital, when none of her family was at the hospital, she signed herself out. She was taken to her “home”, as she called it, to die in peace. She did die in peace. I am still not sure my Mother really forgave me. I tell this story to my sons in the hope they will have the backbone I lacked when my time comes. I do not worry about my Wife in this regard; she is much like my Mother – strong and direct.
So what does this story have to do with my message to the student? Everything! During these times of making very stressful and pain-full family decisions, the doctors in attendance did not offer the kind support we needed. They were always there to answer our questions, but in a purely medical-technical way. We needed more. I am not sure what we needed more of, but I am sure we felt all alone. I know I could have used a backbone transplant.
P.S. My Wife and I share Dr. K. as our primary physician. Dr. K. is an outstanding family practice doctor. Dr. K. saw the need for more training in the issues I speak about above and he acted. He is now a Board Certified geriatric Physician as well as being a Board Certified Family Physician. Do not bother to ask me to reveal his name; his practice is closed to new patients.