The Institute of Medicine’s Rosenthal Lecture on December 12th addressed pop culture images of death with an eye toward understanding how “attitudes towards the end of life inform and shape our cultural repertoire” and helping “overcome the emotional obstacles that inhibit us” from dealing properly with the end of life, said IOM president Dr. Harvey Fineberg. The panelists were Dr. Kathleen Foley, a neurologist and palliative care specialist; Jay Clayton, a Vanderbilt professor who studies social issues in medicine through literature and film; and Brian Doerries, founder of two theater companies that bring Greek tragedy to modern audiences.
Moderator Dr. Neal Baer, producer of ER and other TV medical dramas, cited statistics—30% of Medicare’s budget is spent on the last year of life—but noted that figures cannot be as salient as the stories that it is our nature to tell. “When we are robbed of our ability to tell our stories, we’re robbed of our humanity,” he said. He then shared several film clips about death—moments from Bambi, The Lion King, Old Yeller, Terms of Endearment, Wit, and a few more.
Notably, these clips depicted a death that was decisive. Simba cannot wake his father, he is gone; Bambi’s mother simply is no more. Only Old Yeller, howling in the dark, approached with a shotgun to be put out of his misery, began to show us that the transition from life to death was a problem in itself. (It was later noted that Wit, a movie entirely about a woman dying of cancer, broaches this and shows a nurse physically stopping a physician from resuscitating the patient against her wishes—but this particular lecture on depictions of end-of-life care did not include that particular scene.) As an ICU nurse, all I could think was that these characters were blessed to face deaths so recognizable and so complete. Their pain centered on the sorrow of loss, unlike the pain of so many families who watch the person disintegrate, make weighty decisions, process new information, and try to be optimistic as treatments pile up, even as they lose the person they love.
Marcus Welby, MD, a 70s TV show, evoked laughter with his stern and dated reaction to a mother sobbing: “She needs a sedative.” The Grey’s Anatomy clips showed compassionate doctors. In one, an intubated patient’s family is told that he “died in slow motion.” Sandra Oh’s character explains the failure over several days of his heart, lungs, and brain, and the series of interventions taken. The confusion visible in the family member’s face and the doctor’s response, saying the patient was as gone as if he’d been in a fatal car crash and would have wanted his family to have the same comfort, in knowing that death had come, were the most interesting elements we saw, but all the panel seemed to take away was that the Grey’s Anatomy doctors were behaving better than Dr. Welby.
The fact that the words “intensive care” were not spoken during this informed discussion is a problem. Dr. Baer congratulated the panelists on their “very thought-provoking discussion,” but they sidelined a massive element of the approach to death, and the one that really needs to be dealt with. Beginners, a film about an old man who responds to his diagnosis of metastatic cancer with vigor and dies on a beautiful daybed at home was lauded by Dr. Foley as “wonderfully model(ling) dying well” but I would rather have seen images from The Descendants, in which George Clooney’s comatose, traumatically brain injured wife lies, trached, in the hospital—a status confusing to all, not least her young daughter—while Clooney seeks closure in messy personal matters before withdrawing care (even though this patient’s hospital stay is unrealistically stable and serene).
Mr. Doerries, who treated us to an anguishing scene from Philoctetes with the actor Reg E. Cathey, recognizable as Tommy Carcetti’s campaign manager on The Wire, noted from personal experience as a caregiver that “people who work in places where people are dying—hospice and palliative care—are the most marginalized people in the medical profession.” That these specialists are marginalized is too bad, and stands to change—but this comment’s premise is remarkably wrong, because many people are not dying in hospice and palliative care, nurtured and comforted. Many are dying in intensive care, and the people who work in intensive care are not marginalized. We’re the big guys. We go hard.
I assure you that the bulk of that 30% of the Medicare budget going towards the last year of life is not being spent on home oxygen via nasal cannula, morphine prescriptions, and the salary of the hospice nurse who visits every so often and lets you know when the gently dying person “is gone.” It is being spent in intensive care, where the bed alone costs several thousands of dollars a day, on ventilators, antibiotics, CT scans, MRIs, X rays, dialysis, invasive diagnostic testing, and surgical procedures.
When I introduced myself as an ICU nurse to Dr. Foley after the lecture, she told me the work I did was terrific and important, and then she agreed with me that the deaths occurring in intensive care were completely different from what had just been discussed, and often quite terrible. She said the ICU in her hospital has integrated full time palliative care specialists, which is commendable, though the difficulty of imagining an intensivist who simultaneously practices palliative care highlights the competing priorities of those specialties.
This lecture was an example of the movement to directly address what happens when people die—I hope Mr. Doerries was right in saying that “driving this issue to the fore” will be “the last contribution that the baby boomer generation makes,”—but it also displayed a dichotomy between deaths that are approached thoughtfully and peacefully and those that are fought, which we see in intensive care. It is dangerous to allow the discourse on death to ignore this latter type, and to allow the pleasant phrase “end-of-life care” to exclude those complicated, ugly, expensive deaths, because they form another kind of story, and we could certainly benefit from speaking openly about them as well.
Kristen McConnell is an intensive care registered nurse living in Washington, D.C.