Why?

It’s a simple question: Why do I keep going back?

To be specific, if I’m so unhappy with how I’m treated by healthcare providers, if I don’t believe early detection of cancer helps, if I anguish over every scan and surgery I face, and if I believe it’s absurd to preserve life at all costs, then why do I subject myself to the whole damn business? Why pay the money? Why complain about things that nobody forces me to do?

Simple answer: I have a passion to live. The more complicated answer: I fear death.

This question “why?” was raised by a third-year medical student in Indiana who has read portions of this blog. He’s a friend and neighbor of my daughter and son-in-law, and is someone who harbors doubts of his own about how medicine is organized. Cliff has challenged me to answer the question: Why do I keep going back? He suggests that if I could pinpoint the reason, it could then be dissected and dealt with definitively. At the least, I could name my demons. We agree there’s a $2.6 trillion incentive to keeping things the way they are (what we spend annually on U.S. healthcare), and that inquiry into this matter is totally countercultural.

Why any patient with advanced cancer submits to the degradations of the healthcare system is not a great mystery. Like Cliff, I believe the answer is both obvious and primal.

“Is it nothing less than the fear of death, that great and ancient specter of the human psyche that the medical establishment conjures up in a thousand subtle ways, and that keeps people going back for more because false hope is better than none at all?”

Yes, I think that’s largely true. Cancer care, in particular, trades shamelessly in false hope. Cliff goes on to ask me personally if I believe I’m better off for having had tests and treatment, on the whole, even if I do have to go through waves of anguish in the process.

“Or is it a combination of both, namely that the system manipulates people with fear, but also that the regimens work due to real scientific process, and that the physicians are actually doing some good despite themselves?”

Again, yes. Physicians do enormous good. I almost certainly would be dead had I not sought treatment for my melanoma, which dates back to a primary lesion excised in 2006. In those early days I harbored little doubt that I could be treated and cured. I was happy to find a cancer surgeon with a good reputation and a ready scalpel. It was two years later when the cancer recurred that things got tricky. Major surgery, radiation and interferon therapy all followed. Nothing then nor since could be called cookbook medicine. I’ve had to make dozens of decisions in which my health and mortality hung in the balance--many of them without the guidance or support I wished for.

But let me be clear: The cancer establishment is not uncaring. It saves lives and reduces the suffering of millions. I am alive because of the skill and commitment of physicians, nurses, techs, and scientists. I’m grateful that melanoma is at least treatable, if not curable. But just because I’ve survived doesn’t require me to like what I’ve seen and experienced. In my judgment, our entire healthcare system is seriously flawed in its basic assumptions. Chief among them: its capacity to banish death. Where the lethal course of nature once held sway, roughly and unilaterally asserting its force, technology has been brought in to take its place. The possibilities of medical progress, which includes treatment for all forms of cancer, including melanoma, are believed to be limitless. By implication, cancer can be cured, if only enough of us wear pink (Susan G. Komen), yellow (Livestrong) or black (melanoma research).

The advent of the sort of medicine that can save and extend life has turned the prospect of death into an unmitigated evil. And if it’s evil, then we have a moral obligation to use all medical means to combat it. What can be done to struggle against death ought to be done. This has become the working moral premise of scientific medicine, fully supported by both religious and secular authority. If we don’t pursue the conquest of disease, we are open to moral blame. People will die who need not die.

I’m thinking here not exclusively of technology that can extend life at its very end. The hospice movement has done wonders at affording a peaceful death for people who choose not to apply technology in a vain attempt for more life. There is a growing consensus that being tethered to life-support is an abhorrent way to live. My concern is that well before we reach that stage we expect the full force of technological ingenuity to bring us back to something resembling full health. It’s the designer drugs and high-tech scanners that concern me more than respirators and artificial nutrition.

I believe Americans are now so spooked by death that almost anything that can be said to improve one’s chances of surviving a dread disease becomes standard of care. We have willingly become slaves to technology and high-priced drugs of sometimes dubious value. We don’t want to take the chance of missing something that might turn the tide. The alternative is to accept mortality as our responsibility, which can create an unbearable burden. Who among is so strong that they can decline a particular treatment for cancer that statistically might extend their life, despite its emotional burden, its serious side-effects and its costs? Why, it can be asked, would anyone without a death wish even consider such a thing? Better to live with the tyranny of technology than with the terror of death.

I’m not so sure.

I fear death, and have lived long enough with cancer to know that the premature end to my life is more than a remote possibility. I am blessed by a life rich in spiritual meaning, material blessings and nurturing relationships. Other than my health, there is very little about my life that I regret or wish to be different. I’m content to go on as I am for as long as God permits. But I’ve never gotten completely used to the idea that the present reality of my life will some day cease. The thought of my own death worries me, in the sort of way that the death of someone I love does. It is a taking away of what I know and am deeply attached to.

But I don’t fear death nor trivialize it as some people seem to. I don’t fear death because I believe it will be the end of me. As a Christian, I have hope in eternal life, as I’ve explained in a previous post. I know I will live forever in a world in which heaven and earth are finally one, and in which I will be recognizably, incarnationally myself. The purpose of this post is not to argue a Christian doctrine of resurrection. My point is that even though I believe I’ll live forever, I still fear death. I aspire to be one of those saints who faces death serenely, but I seriously doubt my ability to do so. I am still, quite possibly to my spiritual detriment, too earthly minded.

But I have, at least, acknowledged the certainty that I will die. I wrestle with my fear, and don’t deny its power. In contrast, death remains curiously outside scientific medicine. It is the unspeakable opponent.

In his insightful book, “The Troubled Dream of Life,” medical ethicist Daniel Callahan is equally puzzled by this massive, collective act of denial, given how much death was a part of life until recent decades.

“Medicine, I believe, has implicitly defined its central purpose as an all-out fight against death. Yet what is true of the scientific enterprise of medicine is by no means equally true of clinical medicine, even if the latter has been powerfully influenced by it and has come to encourage it. Every physician knows that patients die, that for every illness for which a cure can be found for a present time, there will be one, at a later time, that will not submit to a cure. There will always be a last, fatal illness for every patient.”

For all the obviousness of that concession, the healthcare system behaves as if it’s still an act of betrayal. Who says patients have to die? Who says that the causes of death cannot be defeated?

I understand the power of that argument. I’ve agonized over decisions about my care that did violence to my body and spirit because, well, that’s what you do to fight cancer. I have never been asked to consider the probability that melanoma will kill me. I’ve been told the odds of my survival, but only in the context of how I would respond to its advancement. Upon close questioning, my oncologist has described what systemic therapy for stage 4 melanoma would be like. His assumption, not surprisingly, is that I would pursue treatment. Does fear (or denial) of death keep him from considering any other course of action? Does it keep me from doing the same?

I haven’t adequately responded to Cliff’s question; it appears there will need to be a second half to my answer. The point I’m making so poorly here is that the fear of death is real, as I have experienced it, and that the emotion it invokes in me is surely one that many in the healthcare system know for themselves and that they assume is shared by everyone. By this logic, taking action against a perceived threat to life is not morally ambiguous. Death in general may be inevitable, but death in particular (“my” death) is contingent. We’re all caught up in a vast illusion that no cause of death should be declared beyond hope. This hope, as I will explain later, is often false. There is a better, truer hope, but it’s not within the power of scientific medicine to bestow it upon us.