Earlier in life, my father was skinny as a reed, ate all the red meat the beef industry could throw at him and most importantly, smoked three and a half packs of cigarettes a day. Friends of mine who smoke found that last part to be mind-boggling. Three and a half packs? A day? Is there even enough time in the day for that much? What, did the guy smoke in the shower? However he did it, he did it for years, until a near-fatal heart-attack in 1977. He was 41.
He quit smoking that very day. He never went back to it. He knew if he even so much as touched a cigarette, he would be smoking them again. He gained a ton of weight that he never really lost, but he never went back to smoking. Not even once.
It took him a year to recover from the heart attack, during which time he had to take daily medicine or else his heart would stop. He also had to manage his astronomical stress levels (made no less significant by his sudden and severe nicotine withdrawal). That his medications made him prone to sudden, violent screaming fits of rage did not help. As children, it terrified my brothers and me, not because Dad was screaming at us, but because every time he did, we feared he would keel over while doing it.
During this time, he was ordered by his doctors not to work. He ran his own law office, which barely functioned while he recuperated. The family very nearly went bankrupt. It was a difficult period the family does not like to talk about. By 1980s, just as things seemed to level out health-wise and financially, my father suffered chest pains. It turned out he had only pulled a chest muscle, but that muscle pull saved his life. In the checkup that followed, he learned he had lung cancer in the lower lobe of his left lung. He went to Sloan-Kettering Memorial in New York, where he would undergo what was at the time fairly radical surgery. The big news was that the Shah of Iran had his cancer treated there, so my father figured, if it was good enough for the Shah, it was good enough for him.
The problem was, his heart was still so damaged that before surgeons could remove the cancerous portion of his lung, they would have to install a pacemaker just to keep his heart from stopping during the lung operation. And despite that, they told him, he would probably die on the table anyway. If he did survive, he would still have less than 10 years left to live; he would not see his children graduate from college. And for whatever time he did have, he would spend it in a chair, too winded to get up. All this, from the best doctors in the world: fight if you want, but know that you will die trying.
My father took this news and went home. And there, he sobbed while my mother held him. Then, with the help of my mother, who never stopped supporting him, he decided that the doctors to whom he trusted his life were all wrong. My mother got him to look into the mirror and tell himself that he would make it. He told himself he would beat this thing. And he did. But he did it with eyes wide open.
He learned the news the day before Thanksgiving. On Thanksgiving day, after the family had its dinner, my father took my brothers and I into the living room, and he told us all that he had cancer. He told us that he would be in the hospital over Christmas, and he told us that he was probably going to die. I did not care what I got for Christmas that year. I just wanted to still have a dad.
He survived the surgeries. He rehabilitated himself so aggressively, and built up his pectoral muscles enough, that he pushed his pacemaker out of his body, and they had to re-implant it. He lived to see all three of his sons graduate from college. He lived long enough to suffer another near-fatal heart attack in 2007 that required him to undergo quadruple bypass surgery. That experience turned his hair white, but the important thing is that he survived and recovered from it fairly quickly. And while it was wonderful that he made it, he made it in a way that fed into a mindset that would ultimately cause him extreme pain and suffering before he finally died.
For the years after that first heart attack and bout with cancer, overcoming mortal health problems were my father’s defining characteristic. He defied the best medical opinions of the time, and he believed that he could overcome any health problem if he simply decided he would fight it hard enough. His second heart attack and bypass surgery caused no major drama in the household, in part because medical advances gave him a good chance for survival. But moreso because he was convinced he’d make it, and he convinced the family, as well. And again, he did. Like it was no big deal. It was, though, especially because he was about to experience a whole lot of big deals in short order.
By late 2009, however, after my brother Tom died, my father’s health disintegrated. Later that year, he underwent minor surgery for skin cancer which required the removal of a chunk of his back. Then he was diagnosed with prostate cancer, which required the removal of his prostate. In 2010, he was diagnosed with bladder cancer, which required the removal of his bladder, all while he battled gout and shingles. He was going in and out of the hospital with regularity, and by the start of 2011, he never really left it. It was an endless series of tests and examinations to determine what was wrong with him without ever providing a clear solution. All my father wanted to know was what disease he needed to defeat. To him, it was simple, even when his situation grew ever more dire.
I visited my father multiple times as his health worsened. That prostate cancer he had back in 2009? That was really his bladder cancer from 2010 working its way out of the body. And by the time he was diagnosed with severe diabetes, MRSA, pneumonia and congestive heart failure (which he picked up in the hospital), those were all the least of his concerns, for he also had cancer in his lungs, kidneys, and who knew where else. The doctors stopped looking. The reality was he was terminal, and had little time left. If he had cancer elsewhere, it didn’t matter. It wasn’t like he could be more dead than he soon would be.
Only my father wasn’t buying it. He had beaten cancer four times before, so what is a fifth? But as he grew weaker, his determination became a delusion that nobody was either willing or equipped to dispel. Like the rest of my family, I felt that I didn’t know enough medically to tell my father I had given up on his chances for survival. And the doctors would not approach the topic. Instead, they kept describing in great detail, told with the slowness and simplicity of how you might explain income tax to a child, what was going wrong with my father. They never suggested a proper course of action. They never drew any conclusions. They only suggested more tests. And more tests. And more tests. And my father kept taking them, until the day he lost consciousness, at which point it was gently suggested that now might be a good time to consider moving him to hospice care.
My dad lasted less than a week in hospice. But he was probably more comfortable there in those final days than he was in the months he spent in the greatest hospital in the world, vainly trying to convince himself that he could do the impossible. Shortly before he died, I sat with him and told him good-bye. I said things to him I have never said to anyone else before or since. It was one of the very few times I ever had a truly intimate discussion with my father. And somehow, in those moments, this man who was medically classified as “non-responsive,” managed to roll over, and without even opening his eyes, drape his arm across my shoulder.
Medicine has no explanation for that. It can only offer an extraordinarily expensive range of care that seems to be more dedicated to extending the duration of life rather than the quality of it, as if to say that living longer is intrinsically better than living without extreme discomfort or indignity or anguish. Such care is, of course, enormously expensive, but as long as there is health insurance to pay for it, why not take advantage of it? There is an entire medical profession dedicated to delivering as much care as possible, sometimes even against the wishes of the patient — who might not always have the proper frame of mind or context in which to make a fully informed medical decision. This was surely the case with my father, whose view of medicine had been substantially altered years before.
Having been told to give up hope — and to have survived despite that — convinced my father that such an outlook was always the only way to go. If the doctors said he could make it, he would make it. If they said he was doomed, they were wrong. And so, he would take tests, undergo any procedure, endure any hospital stay. It would never have occurred to him, and in fact, never did occur to him that perhaps there might come a point where it just wasn’t worth it to undergo any further care, and to focus on enjoying what time he had left. He couldn’t even digest the possibility of not having time left, so perhaps getting him to appreciate his final days outside of an invasive medical environment is expecting far too much.
If he didn’t have health insurance, he could not have been like this. But he did have health insurance — a peach of a plan from Blue Cross Blue Shield that he always held on to because he figured that if he let it lapse, with his medical history he’d never get coverage again. (By the time this point became moot after the passage of the Patient Protection and Affordable Care Act, he was already deeply ill, and dropping or switching insurance was simply not on anyone’s radar.) And since he could expect to receive any kind of coverage suggested to him, the doctors and hospitals were only too happy to give the man what he wanted, regardless of cost or outcome.
In today’s health care environment, the customer is always right, especially when they refuse to believe that they are dying of cancer.
I have thought much about how my father died in the years since his passing, and it has led me to a conclusion that his health insurance played a large part in his grim outcome. Not that he didn’t have health insurance – he did. And not that his coverage was insufficient – it wasn’t. But what health insurance could do for him and what he needed were so far apart from each other that the role of health insurance almost became irrelevant in terms of making his life better, and became central in prolonging his suffering. And my father’s case was not unique. Cases like his play out, to different degrees, every day in this country. And increasingly, they point to fundamental flaws in how private health insurance is structured that are slowly, inevitably rendering the very idea of private health insurance obsolete.
There has been a lot of discussion in recent years about the failure of our modern health care system. For all of the medical marvels we have at our disposal, they are expensive, out of reach for many, and in certain cases, they are not necessarily the best option, even if they make you live longer. In cases where a terminal patient can afford any kind of care, the kind of care our health care system is hardwired to deliver can be at odds with what the patient really wants or needs.
Ours is a system in which medical technicians are trained to diagnose problems, to match those problems with the most effective surgical or pharmacological solutions and then produce a range of expected results, with the primary goals being the reduction of pain and most importantly, the extension of life. Nowhere in our medical system is there much room for discussing when the extension of life runs counter to making the patient more comfortable, because opting to not extend life is anathema to our idea of modern medicine. If a terminal cancer patient is in chronic agony and has a month to live, the notion of simply ceasing efforts to prolong life and instead focusing on making the remaining life as comfortable and as meaningful as possible, is one that medical practitioners have a hard time suggesting.