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.
No one means any harm by this, but the downside of all of our medical marvels is that we are living longer lives. And in those longer lives, we will face more medical problems, and more serious medical problems. This is something the life insurance industry is already reminding us as it urges consumers to properly plan for a retirement that will likely last longer than they expect, and will likely drain their savings when costly medical issues arise. There is a decent likelihood that, given current medical technology and its advances, there are noteworthy odds that, before we die, we will descend into a medical purgatory in which what we will endure to live longer will question the value of that longer life.
We see this with increasing interest in hospice care, and efforts to get hospice care covered under standard health insurance coverage. For the terminally ill, spending one’s final days in hospice can offer a better chance at one last great day. Or, for those able to receive hospice care at home, the terminally ill can choose to spend their final moments in a place that is familiar, comforting and warm, much as our forefathers often did before routine hospitalization forced us to die outside of our homes.
The truth is, for all of the villainization that health insurance has received, especially during the prolonged national debate surrounding the passage, implementation and legal challenges of the Patient Protection and Affordable Care Act, health insurance actually does a terrific job at getting a lot of people as much medical care as they need (or want). But because of how health insurance is structured as a fee service, and as an insurance product, the very presence of insurance is distorting how we practice medicine itself. And as our society begins to experience a massive demographic shift, as millions of seniors and boomers enter that part of their lives when they will require ongoing medical care, that distortion is poised to inflict a mind-boggling amount of unnecessary suffering upon ourselves and our loved ones.
In the case of my father, he had access to what amounted to endless health care, between Medicare and his private coverage. Whatever he wanted or needed, he could get without being hit directly in the pocket. I never saw the final invoice for all of the costs he accrued in his final months of care – his hospital stays, tests and various surgical procedures – but according to this infographic on the cost of cancer, his kidney cancer and lung cancer treatments alone probably cost in the neighborhood of $175,000. By the time he discovered both, the responsible thing might have been to prepare him for end-of-life care and pain management rather than fighting a rearguard action to find some way of preventing his terminal conditions from doing what they were always going to do anyway. At the very least, it probably would have cost everybody a lot less money.
And therein lies the central conflict of our way of delivering and paying for health care: how much it costs. Chances are, at least one of you recoiled at my notion that had my father’s doctors convinced him not to undergo futile rounds of medical care, it would have saved a small fortune. After all, life is precious and worth fighting for. But the methods we used to prolong it do cost, and that cost skews our decision making process when it comes to the kind of medicine we seek to take, and the kind of medicine we seek to provide.
Our health care is delivered by medical professionals who are oath bound to address our ills without primary concern for compensation. This health care typically happens in a place that straddles the Hippocratic line; it often will treat even those who cannot pay, but will expect those who can pay to do so, often at a markup to offset the health care that is given but not paid for. And the health care is often paid for by private contracts designed and administered by those with no Hippocratic oath whatsoever, which explains some of the more aggressive health claims practices we have seen, especially in the years prior to the passage of PPACA.
None of these things are bad on their own. But together, they form a machine whose gears simply do not line up properly, allowing plenty of patients to either slip though the gears entirely, or to get caught by their teeth and crushed. We see this especially in how health insurance itself is structured, and how policyholders must endure the claims process. The core logic of insurance is that it is essentially a form of gambling. You write coverage for X number of policyholders on the assumption that only a portion of them will file a claim. If you have too many claims, you have reinsurance to protect your reserves, and you can make up the unexpected claims cost on the back end by charging your policyholders more down the line.
Health insurance is structured like this, on a series of if/then assumptions. If you get covered, and if you get sick, and if you require certain remedies, then you will be covered to a set amount for them. Baked into that, at least philosophically if not actuarially, is the notion that like any other kind of insurance, there is the possibility that one might buy this coverage without ever needing it. But health insurance is not like car insurance or fire insurance or flood insurance. Everybody gets sick. Everybody files a claim. And unlike other forms of insurance, the longer one has coverage without filing a claim, the more likely it will be that the first claim they file will be a large one.
This has led to a weird conflict of assumptions between those who provide health insurance and those who use it. You would never hear in life insurance circles that too many people are dying and triggering their policies, and yet, an argument raised more than once during the Obamacare debates was one of health insurers myriad problems: people were filing excessive claims.
Health care reform – which was essentially health insurance reform, since this cumbersome mess of a law affected how people finance health care rather than the actual delivery or cost of healthcare itself – was mainly pushed through on the back of a sense of broken trust between the insurer and the insured. The idea that insurers were pursuing claims too aggressively, and hitting policyholders with unexpected reasons for denying coverage, shattered the fundamental bond that makes insurance work: I pay you money and in the future, you cover my costs, if I have them. When confidence in that wobbles, the product wobbles, as does the industry that sells it. And so, health insurers found themselves in the middle of some strange crosshairs over PPACA. The government mandated some 40 million people to buy its products, but forbade the claims practices that were the most effective means by which to write health insurance profitably. And it throttled how much profit could be made, so the ones who suffered the most were the health insurance agents, who, in the end, had nobody to really advocate for them.
Another storm is brewing, however. And it will make the industry changes that happened over PPACA seem like a tempest in a teacup. The baby boomers are all hitting 65. Soon they will be in that phase of their life when their medical costs will be more expensive than ever before. There will be a lot of terminal illness. And there will be trillions of dollars spent on medical care ordered by hospitals and doctors who need to push their product to stay afloat, paid for by insurers increasingly resentful of their rising expense ratio, and taken by patients who have less choice in the matter than they would care for.
Unless the government somehow intervenes and forces the cost of medical practice lower, or nationalizes the entire medical profession from stone to sky, then we must face the reality that actually paying for this massive diversity of health care will require enormous resources. We have them at our disposal – one look at the discretionary spending budget of any given year shows that we obviously have the money – but we lack the political will to spend it on this particular problem. Our military spending alone is more than the cost of Social Security and Medicare combined, yet just try to get any sitting President to call for a serious draw down in military spending. A modest solution might be to treat health insurance as something best left to the semi-public arena, like utilities, or to the public arena, like fire departments and police, in the hope that by trading private unaffordability for government inefficiency, we might somehow find a way to help more people for less. But that seems unlikely as well, especially if the budgetary woes of the United Kingdom’s National Health Service are any indicator.
Likewise, while there might be a cultural shift to providing more quality-of-life care and end-of-life care instead of the life-at-all-costs care the terminally ill receive, that change will be slow in coming, and only after extraordinary costs have already been incurred. The kind of costs that will destroy fortunes and splinter families. The kinds of costs that empower political movement and legislation against an industry that has a spotty record when it comes to protecting its own interests on Capitol Hill.
The answer is insurance itself. If health insurance were to redraw its own boundaries – if the products were structured less like a cover for a possible loss, and a funding mechanism for an inevitable loss (like life insurance, or, put another way, retirement planning), insurance might not cover more people, or provide more coverage per person. But what it would do is help set expectations so people knew where their coverage would take them and where it would not. And, it could train people to devote these resources to use them precisely as they would need them, or want them, even if the needs are unusual or outside of common practice.
This is important because if Obamacare proved anything, it is that the take-up rates on exchange policies have been robust enough to prove that people really did want the access to coverage that the law mandated. Some might have groused over being told to buy it, but for the most part, people did not have to be prodded to the exchanges. They were already there, trying to navigate the damned things. But you get what you pay for in insurance, and just because everybody is covered doesn’t mean they are covered well, and as people get older, as they get sicker, as hospitals press them to incur enormous medical costs, the system will strain and its weak spots will show. The question isn’t whether the American people will inevitably demand a single-payer system. The question is how long it will take for the political will to gather for it, and how many people will die before then.
This point is not to say that single-payer is good or bad. This point is to say that single-payer is inevitable. And when it happens, the health insurance world will find itself at a pivotal moment indeed, able either to become the provider of choice for an otherwise nationalized industry, or to be cast aside as the need for paying for insurance separately becomes something in which only the wealthiest might indulge.
When I think of my father’s final days, and the cost to keep him alive long enough so he could no longer say good bye to people before he passed, I think of what this country will look like when the boomers, in their vast numbers, start going through the same thing. The timeline for that is not so long; just about the same distance as the life/health industry’s own deadline for solving its potentially devastating manpower problems. In 10 years’ time, there will be a major inflection point for the very nature of this business and what can only be called the high cost of living.
Will it be a point that the industry acknowledges with enough time to craft a solution? Or will it wait until the problem is set at its feet by an angry public and a skeptical and opportunistic Congress?
I don’t know. You tell me.