Brenda Denzler is a writer and editor living in North Carolina. She received her doctorate from Duke University and worked as an editor at UNC-Chapel Hill before she was diagnosed with inflammatory breast cancer in 2009. Since then, she has devoted a great deal of her time and energy to understanding and writing about cancer, cancer treatment and the impact of pre-existing PTSD on the ability of doctors to give and patients to receive medical treatment.
Our cultural tendency to try to draw bright lines when it comes to the cost of health care relies on hindsight to criticize doctors for their lack of foresight. But it is only hindsight, as we all know, that is 20/20.
I’ve always been a fan of bright lines—of the “yes” and “no” in life, the “right” and “wrong,” the “this but not that.” In a culture where everything is becoming commodified and reduced to the precision of dollars and cents, the ability to think and operate on the basis of such bright-line dichotomies can be useful…or deceptively simplistic.
Bright-line logic drives a lot of the public debate about the rising cost of health care, which focuses amazingly often on two whipping boys: the rising cost of cancer care and the way health care expenses accumulate in the final months and weeks of life. Articles lament the rising cost of end-of-life care: 25 percent of Medicare spending is for the 5 percent of Medicare patients who are in their final year of life. One-third of those final-year costs occur in the last month of the patient’s life and usually involve intensive medical care performed in desperate attempts to cheat death and prolong life for one more day, and one more, and one more….
One of the reasons for this spending spike in the final days of life is our cultural aversion to dealing head-on with the reality that we are all going to die and making plans accordingly—an aversion that is very apparent in how we train our health care providers, which in turn affects the kind (and cost) of care they are equipped to provide.
Medical schools provide very little education to physicians-in-training about end-of-life care. Studies have shown that only 18 percent of medical students receive any formal training at all in how to handle the “dying” part of living for their patients who are terminal, and only 6 percent of students who found themselves having end-of-life discussions with patients and families received any kind of supervision by senior physicians—a rate of oversight that would be unthinkable if those students had been learning how to stick a needle into a patient for any reason whatsoever.
The result is a cadre of physicians ill-equipped, personally and professionally, to squarely yet compassionately face the realities of having a patient who is dying. Nearly 60 percent of physicians in one study admitted that their terminal patients made them feel depressed and anxious. Little wonder, then, that a Harvard study revealed that almost two-thirds of doctors over-estimated the survival time of their patients.
It is here, I think, where our cultural tendency to try to draw bright lines begins to seriously overstep itself, because it relies on hindsight to criticize doctors for their lack of foresight. And hindsight, as we all know, is 20/20.
Of course, we always have statistics to help us predict the future. By doing more studies on death and its medical precursors from a purely statistical perspective, we can probably develop more precise algorithms for estimating when patients with a given condition, at a given stage of progression, are going to expire.
But in the end, it is still going to be a bit of a guessing game, and in the end, the costs associated with death and dying are going to continue to accumulate more or less disproportionately in the final weeks and months of life. Why?
Because statistics has one big limitation in health care settings: It makes statements about large groups of people, not about the individual person sitting in the clinic shivering under a thin paper gown. It makes statements about likelihoods of given events happening in well-defined groups, not bright-line certainties of events for individual patients.
My friend Louise lived with metastatic inflammatory breast cancer (IBC) for eight years, far exceeding the median survival time for women with MBC, which is two to three years. She was in the long tail of the survival curve—something that no one could have predicted for her.
In early 2016, Louise began to feel worse than usual. She went to her local ER, which sent her home again telling her she was fine. Two days later she was hospitalized in septic shock. For the next four weeks, her life hung in the balance as her doctors located and treated an MSSA (not MRSA) infection. The treatments, however, caused kidney failure, which once again threatened her life.
Her friends, watching from a distance, were terrified. So was Louise, during those fitful moments when she emerged from sleep because she couldn’t breathe due to fluid build-up from the kidney failure.
The question was, when do you say, “Enough”? Here we had a woman who had long outlived the median survival time for her kind of cancer, who had developed not just one but two life-threatening issues on top of the cancer. When is enough, enough?
While we all watched, waited and worried, the doctors just kept treating her as if they expected her to live. And you know what? She did! Thanks to the persistent efforts of her death-denying doctors, Louise was alive, back at home and well enough three months later to celebrate the third birthday of the granddaughter who was named after her. In the year that followed, she did what she had always done: traveled as much as she could, entertained, was politically active, hosted Christmas, gave advice and consolation to her IBC sisters….
If Louise had died, her month-long hospitalization would have gone down as just another one of those desperate, too-expensive end-of-life events that “should have” been avoided with a referral to hospice. Since Louise lived, her month-long hospitalization was considered money well spent to deal with a serious health problem.
Ah, hindsight. No one could have predicted which way it would go, but hindsight makes it seem like someone should have.
When the end finally came, a year after the septic shock incident, it came without all the hospital hoopla, in the comfort of her own home, in the embrace of her family and hospice. Oh…. And for those who are so all-fired concerned about the costs associated with “too much” end-of-life care, you will be happy to know that it also came within your bright-line “budget” for dying.