The high cost of dying

For a woman who had been healthy her whole life like MaryLou Townsend, 58, of Louisville, Kentucky, being diagnosed with terminal cancer is as devastating as it gets. The reality of impending mortality at a relatively young age (the life expectancy of women in the United States today is 81) must evoke feelings so powerful – terror, sorrow, dread, anger at being cheated of more than two decades of life, hope of an afterlife – that all other concerns fade into insignificance.

Or so they should. A human being faced with the certain prospect of his or her own untimely death should have the chance to make the best of the remaining time, contemplate the joys of the life lived, and take comfort in the love of family and friends. But that is not what happened with MaryLou Townsend or what happens to countless other Americans.

Instead, Townsend spent much of the nine months between being diagnosed with advanced pancreatic cancer and her death (in 2014) worrying that the cost of her treatment would financially devastate her family. She considered whether and when to stop treatment to prevent a second catastrophe. Meanwhile, her daughter had to forego precious moments with her mother in order to fight an insurance company that repeatedly refused to pay for treatment her mother’s doctor deemed medically necessary.

We know Townsend’s story, down to the facts that she faced her fate with remarkable aplomb, courage, and more concern for the economic impact on her family than on her own passing because it was featured in a recent segment of National Public Radio’s excellent Living Cancer series. The stories of the numberless others who out of a blue sky face the same shattering reality remain untold. Dying in America for many, many people amounts to a double whammy in which financial ruin compounds the suffering of patients and families. Death destroys life but doesn’t cancel debt.

Illness is the single most frequent cause of bankruptcy in the United States. Of course, the double whammy hits not only the dying but many others who suddenly get sick or who live with chronic illnesses and with big debts for years or decades.

But the stories of people like MaryLou Townsend represent, in its purest form, the nature of our system of mercenary medicine which too often adds a second dose of pain to that inherent in the vulnerable nature of life, the seeming randomness of medical crises, and the fact that we are like every living thing mortal but we are the only species that knows that and must live with it.

For the Townsend family the extra pain came in the form of medical bills amounting to over $300,000, fueling fears in the husband that he would not only lose his wife but also his house. While eventually the insurance company paid most of the costs, there were enough exclusions hiding in the policy’s fine print that in the end the family was left with a debt of $100,000.

One of the most telling things that came across to me in the NPR story is the extent to which the system of mercenary medicine, which persists almost intact even after Obamacare, is taken as an unchangeable fact of life by everyone enmeshed in it, as if no other health care system was possible. This attitude engenders a lukewarm form of empathy.

Take what Maggie Woods, director of the health and life division of the Kentucky Department of Insurance, told NPR: “I always say, yes, $100,000 in debt is horrible, but half a million is much worse. Unfortunately everyone thinks if it’s insured it’s going to make you 100 percent whole. It’s not the case.”

Or take Shawn Glisson, Townsend’s oncologist, who said several of the members of his team spent days wrangling with insurance companies over their refusal to pay for some necessary drug or treatment, sometimes to no avail. But, according to the NPR piece, Glisson “also doesn’t think it is a doctor’s responsibility to be involved in all the financial issues that arise during treatment beyond helping patients gain access to drugs at a reasonable cost. No one shares with me their 1040 and their economic balance sheet. People come see me because they want to live. And I don’t have any control over the cost or what they signed up for or didn’t sign up for or whether they have access to money or not.”

Surviving cancer is a blessing but has its own costs. NPR reported on survivors who were forced to mortgage theirs or their family’s future in order to pay medical bills. One patient had to take money from her son’s college savings account, another to tap into her own retirement account.

The double whammy affects even those survivors who have navigated the medical system from the inside. A retired oncology nurse said: “I think I could deal with the actual cancer far better than having to deal with the medical system and the cost of treatment.”

Beyond the scope of the NPR series, but very real nonetheless, is that the high cost of dying in the United States doesn’t end with death or even with the blizzard of medical bills.

The average funeral in the United States costs $8,000. Funeral directors have a big incentive to drive the cost as high as possible so some funerals cost much more. Like in the medical system, the market doesn’t work in this sector as it is supposed to. Even if you could, which is almost never the case, you don’t go shopping around for the lowest cost surgeon when you are told you have cancer and need an immediate operation. Nor are you likely to tell the funeral director his markups on caskets are outrageous (they usually are) and you are going to go shopping for your own and bring it to him.

Shopping for the best deal on a surgeon or a casket is not only nearly impossible, it strikes most people as unseemly. And some funeral directors are especially adept at manipulating vulnerable relatives’ feelings of guilt and the desire to do right by their loved one and show the world that he or she was a beloved and important person. Add that to the high cost of dying.

Dying is inevitable and it is always surrounded by pain. But the high cost of dying – or of cheating the Grim Reaper by surviving cancer – is not inevitable, nor is the additional pain that cost inflicts. Yet the vested interests responsible for the high cost of dying in this country are so powerful and institutionalized they might as well be an irresistible force of nature.