The epicenter of the debate surrounding costs and utilization of health care is on end-of-life care. A full one-third of Medicare expenditures are spent on chronic illness patients in the last two years of life. For perspective, consider this graph: our costs of care are comparable to those of European countries for the first five decades of life, but we spend twice as much on people in their sixties, thrice as much on people in their seventies, and over four times as much on octogenarians.
Why is this? While the last half-century has seen the rise of countless innovations to sustain life—cardiopulmonary resuscitation, organ transplantation, mechanical ventilation—what we haven’t seen is a social consensus on when to employ and withhold such measures. The ever-expanding capacity of what we can do is surrounded by the nebulous aura of what we should do.
In the absence of clarity, the result has been to default to the instinct that more is better, that it is better to do and act than to watch and wait. This excerpted work by Irish poet Dylan Thomas encapsulates perfectly our social attitude towards end-of-life care:
Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.
All the while, we are carrying forward an unsustainable system towards an inevitable breaking point, moving ever-closer to the convergence of the unstoppable force that is health expenditure and the immovable object that is our fiscal feasibility. In the next twenty years, the number of Americans over the age of 65 is due to rise from 40 million to 70 million. The time for a consensus on when ‘enough is enough’ is now.
The recent controversies over Jahi McMath and Marlise Muñoz bring these challenges to the forefront of public attention. They require us to ask ourselves, what does it mean to be alive? What ‘gives’ life, and at what point can we conclude that quality to be absent?
The fundamental issue, here, is a profound gap between how physicians understand these matters and how they are addressed the popular media which shapes public consciousness. To any reasonable health care provider, Jahi McMath and Marlise Muñoz were dead. Their lungs could not breathe. Their hearts would cease to beat from hypoxia. Their brains could not perceive, process or direct. Whatever essential qualities that had given Jahi and Marlise life and made them functioning people had faded away.
Yet, in public discourse, a separate vocabulary emerged. Jahi McMath was “brain dead,” which communicated some intermediate stage that was not fully alive, but perhaps not really dead. Marlise Muñoz was on “life support,” conveying that there was some sense of life that was being maintained by medical means. When those artificial procedures ceased, they were “withdrawn,” the “plug pulled,” with implication that a conscious, willful act to remove the last fragments of life had occurred. The semantics matter: they prime the public’s thinking for a much different understanding than what is medically accurate.
This is critical; the ways that physicians and the public understand concepts drive the decisions they make, the values they ascribe to those decisions, and the consequences they perceive to result from those decisions.
When gaps arise in physician-patient dialogue, what patients decide can deviate from what their beliefs and interests might have otherwise led them to choose. In 2005, the National Comprehensive Cancer Network re-branded the concept of “watchful waiting” with “expectant management,” more recently revised again to “active surveillance” out of concern that patients might not find the former terms proactive enough. Likewise, research has shown that patients’ families often make different choices when consulted about a ‘Do Not Resuscitate’ order, versus the more benign-sounding preference to ‘allow a natural death.’
The lesson from media coverage of Jahi and Marlise’s stories is that physicians have the opportunity—I’d argue, the responsibility—to frame the dialogue and shift the language about end-of-life care. With the communication platforms that physicians have available today, why allow the media to steer the language? Physician-blogger Dr. Bryan Vartabedian often asks if the anti-vaccine controversy would be as influential if more physicians were engaged in the public dialogue.
Physicians have a responsibility to shift the language on end-of-life decision-making to bring public thinking into alignment with medical consensus. Jahi and Marlise’s deaths are undoubtedly tragic, but they present the opportunity to engage the public on what truly happens at the end of life, to empower patients and families to make value-informed decisions about what they want for themselves and their loved ones. If we want to take back the debate from rally cries of “death panels” and politicized accusations of “rationing care,” maybe it starts here.