Through it all, he rarely complained. It just wasn’t part of who he was to do so.
For the last 48 years of his life he had health insurance from the military and, following active duty, from a private plan that may be characterized as "Cadillac" today. Vignettes from his story have informed me that as we take this first step toward HCR (perhaps being generous in that feeling), the ones that follow need to come quickly and most of us need to take them in order to improve our collective health.
My father used the health care system for sickness care, not to maintain his health. Maybe his distrust of the health care system was a "black thing" in his generation, though I doubt it. Even though he spent many years of undergoing regular, comprehensive flight physicals in the Army, the early warning value they provided didn’t sink in. Once he retired his health was something to be lost and regained. He grudgingly acknowledged, usually at the urging of my mother, that he needed to see a doctor when he actually did so.
I can’t believe his experiences at the doctor’s office were atypical. He experienced long, unproductive periods of waiting for a very brief conversation with a doctor who was doing his best to maximize his time by seeing as many patients as possible. I know all doctors are not like that but the way our system pays doctors and judges standards of care seems to encourage the practice. In many cases doctors figure, and rightfully so from an income perspective, that their time is worth more than ours. Patients should bear the responsibility for the cancellations of other patients through double and triple booking. For those who are socially wealthy enough that probably isn’t their experience.
He was given drugs to control his high cholesterol and blood pressure and though he lived a relatively healthy life style he could have benefited from changes. He could afford the co-pays for his prescriptions so he took them without inquiring about long term effects or alternative treatments. He didn’t consider ways to lower the stress in his life. I think he knew a lot of it came from work and his work, along with the financial security for which it paid, was his life.
He was the first to undergo an angioplasty in our family and didn’t know about medicated stents. We didn't know there was a difference. While no type of stent can prevent reclotting all of the time, his needed to be replaced with a medicated one later on.
When his kidneys began to fail, he was told to prepare for a transplant or dialysis for the rest of his life. He was told there was nothing that could be done to prevent it. And the slow march began of failing health and problems from which he would never recover.
His many trips to various hospitals were marked by uneven levels of empathy by the staff until my mother started to leave his résumé around his hospital rooms in the form of pictures of the grandchildren, his Colonel paraphernalia, and him flying during the war, so he wasn’t just another old black man in poor health. A dear friend told me about her Appalachian mother who kept her invitation for her PhD ceremony in her purse and showed it to every doctor and nurse she met during her hospital stays saying, "My daughter is a doctor too." Her mother said it was her trump card.
He was not much of a fighter when it came to his own health. I think he was embarrassed, ashamed, and too considerate and polite. We had to learn to fight for him. He received a letter denying a kidney transplant from a matching live donor. The letter came from a doctor employed by the insurance company of his now sold "Cadillac" plan; a doctor he had never met. He was at a loss for words. We once again trotted out his résumé and promised to do all we could to publicly embarrass the company if this decision were to stand. The insurance company relented immediately. I wish I could have spared my father that moment. A physician saying he wasn’t worth the risk of a long awaited transplant felt like a death sentence to my father. His dialysis was not going well, he was regularly too sick afterward to do much, and he felt as if he was merely existing, not living.
My father died at 68 following another recurrence of an infection cycle that began with C. diff in one of his many hospital visits. He was two years younger than the national average life expectancy for black men in the United States.
My father bore a lot of the responsibility for his state of health. No, he didn’t smoke or drink, nor was he overweight. But he was reactive rather than proactive when it came to his health. He generally accepted what he was told without seeking alternatives and often ignored or was oblivious to warning signs until he was really sick. He was the helper who hated to need help from others. In the end, allowing us to help him was the greatest gift he gave us in our preparation to go on without him.
That said, if financial pressure beginning with outrageous levels of student loans for doctors completing their medical training is a driver for a process of care that values quickness above connecting with a patient, then let’s consider forgiving medical student loans or creating a comprehensive, free national medical training system. Some programs already attract doctors to traditionally underserved areas with medical student loan forgiveness so why not make it a general approach?
Doctors in Germany are trained at relatively miniscule personal cost when compared to doctors in the US. Americans are willing to invest over a million dollars to train each fighter pilot and I think a doctor’s value to society compares favorably. If resulting downward pressure on physician incomes causes us to lose medical students who are primarily driven by a desire for wealth, then a free medical training system may give us access to medical students who are smart enough to do the job and care enough to become doctors who take the time to partner with patients, even patients from different cultural backgrounds.
I often met social workers in hospitals who seemed more concerned about how we could handle the costs of care and medication rather than about the process and family structures of care giving. Let’s help medical social workers do more than financial planning by taking the concern for payment off of their table. Let’s give them tools to truly help families to cope with medical emergencies and long term care. When my German father-in-law opted to receive end-of-life care at home, the insurance company paid for an evaluation of the home, purchase and delivery of needed equipment, in-home doctor’s visits, and counseling support and a stipend for his wife for providing the care. He was not rich. It is what the society here is willing to invest in a normal man.
Let’s reward the health care system for helping patients to maintain good health as well as rewarding those who serve the sickest the fastest. The National Health Service in the UK does so to some extent and so could we. Creating a partnership of care between doctors and patients helps patients to take more responsibility for their health and the lifestyle changes that can sustain good health. Underserved communities need more than access to health care when they are sick, they need outreach from the medical community to develop trust when they are well.
Those of us with a proclivity to see ourselves as consumers of health care could benefit from evaluating what it means, and is worth to be healthy. We could learn to use the expertise of the medical community by learning to ask the right questions and having the courage to do so. We could benefit by fighting a marketing driven feeling if inadequacy that empowers us to ask our doctors for specific medication but of course never suggests ways to deal with symptoms without expensive drugs or treatments.
The fact is without sick people, or those who think they are sick, our market driven health system could not function. We have a lot of structural and behavioral cycles to break.