Key words can be powerful in shaping cultural norms, including the norms of sub-cultures that flourish in hospitals and training programs. At the beginning of a large-scale social change, such as the new public prominence of debates over Medicare policy and palliative care, a telling phrase that emerges early can influence how the change becomes manifest, for better and ill, and often in ways their originators did not intend. Individuals and groups, their imaginations imprinted with a poignant rhetorical turn – e.g., “EOL” and “ethics at EOL” – may go down one set of pathways, not considering others.
Consider the experience of a large-scale health care system on the West Coast where I served as a consultant. Last year, its leaders established palliative care teams in their hospitals. The teams work closely with case managers, social workers, primary physicians, and discharge planners, and the goal is that palliative approaches for patients with advanced chronic diseases will become the norm. Hospital staff collaborates with patients and families so that considerations of comfort and function join potential survival benefit in making treatment plans.
For patients in the late but not final phases of heart disease, pulmonary disease, neurological degradations, multi-organ failure, cancer, and major trauma, the intention is that treatment plans arising from palliative care approaches will reduce their burden of suffering rather than extend their dying with the unreflective application of invasive medical technologies. All this goes under the rubric of “EOL” or “end-of-life planning.”
How is the program working out in practice? What I noticed during some recent visits, an observation seconded by senior leaders in the organization, is that “EOL” is being translated on the ground to “near death.” Treating physicians request palliative care consults near the time of discharge, not at admission, and hospice referrals follow the palliative consults closely in time. Counter to what the program’s sponsors anticipated, palliative care in their hospital tends to function as “hospice lite.”
This experience is fairly typical – palliative care is initiated far too late. There are regional differences. On the West Coast, many fewer patients spend their final weeks in ICUs or on ventilators than in the Northeast. Meanwhile, in Boston and New York City, in the very medical centers with programs that have shaped palliative care as a specialty, Dartmouth Atlas data indicates that terminally ill patients receive more invasive treatments and spend a longer time dying in the hospital than anywhere else in the United States, suggesting that rank-and-file physicians in those centers have not heard the intended message of the palliative care/EOL teams.
Curricula in palliative care emphasize that palliative approaches are not on/off switches, which stop treatments with purported survival benefit in favor of others that optimize comfort and function. Instead, they recalibrate care to meet the full needs of patients (and their families) and question knee-jerk application of invasive technologies. Part of their message is that good doctoring and nursing for these patients takes time, that the most useful technology may be a bedside chair. Their goal is to provide physicians and nurses with knowledge and reassurance for their task of providing patients (and families) with sound judgments in the face of uncertainties, the basis of medicine’s social contract.
When training programs package their curricula, however, they tend to label them as “end-of-life” – “the EOL stuff” in the hallway parlance of trainees. So, too, with organizations at one remove from patients, such as The Hastings Center and its longstanding initiative in what it labels “ethics at EOL.” But I venture that most of us, professionals included, imagine “end of life” as THE END, the days or hours of active dying. “Death panels,” a deeply perverse piece of demagoguery from 2009, resonated widely in part because it accurately depicts an aspect of the cultural sensibility, which is that palliative care equals EOL and that death is imminent. Urgent decisions have to be made; consultations with palliative care teams and ethics committees are requested; the hospital needs to move things along.
What are some likely consequences of jettisoning the rhetoric of “ethics at EOL” and adopting instead “good doctoring” and “good nursing” for patients near the end of life? Several come to mind, but I’ll mention three.
The first is recognition that bedside chairs, the willingness to sit in them, and skill in guided conversation become of prime importance, usually more appropriate than fifth rounds of chemo for those with widely metastatic cancer or repeated invasive diagnostic tests for those in the late phase of multi-system organ failure.
The second is that the reframe prompts a shift away from a rhetoric of “choices” to one of making decisions, some of them hard. It may seem counterintuitive, but the current trope – patients and families are making choices – promotes the illusion that there is some “right” choice out there and that if they only knew or studied enough, they would make it. It’s a consumerist logic, and it translates easily into thinking that the patient’s situation can be fixed by having plenty of the “right stuff’’ – more tests and procedures.
It should not surprise anyone that those who prosper from selling medical commodities actively promote that approach. But for most patients near the end of life, especially those in their eighth decades and beyond, there is little or no science to support a commodification approach. In short, “more” often happens, but little or no good comes of it.
The third point follows from the previous two. If, in fact, palliative care rests on the capacity of physicians and nurses to offer sound judgments as they help patients near the end of life and their families realize their desires to balance comfort, function, and survival, then ethical dilemmas are rare. Sound ethics are necessary, just as they are in all aspects of professional training and conduct, but they are only part of the larger picture of good doctoring and nursing. Anyone who has served on hospital ethics committees knows that most of their consults end up as efforts to manage damaged doctor-patient-family communication or inter-professional communication, not as resolutions of dilemmas with substantial philosophical content.
Would it not be better to talk about patients “near the end of life” and the art and skills required for their good doctoring and nursing? Are not those the capacities for sound judgment that palliative care seeks to cultivate and make normal?
Robert Martensen is the author of A Life Worth Living: A Doctor’s Reflections on Illness in a High-Tech Era (Farrar Straus and Giroux, 2008) and associate editor of Surgical and Palliative Care: A Resident’s Guide (American College of Surgeons, 2009). He is a lecturer in the Department of Global Health and Social Medicine at Harvard Medical School.