Welcome to Ethics Consult -- an opportunity to discuss, debate (respectfully), and learn together. We select an ethical dilemma from a true, but anonymized, patient care case, and then we provide an expert's commentary.
Last week, you voted on if it was ethical to stop treating Edith, a woman whose treatment was ultra-expensive.
Can the hospital ethically stop the treatment?
Yes: 54%
No: 46%
Who should be required to pay instead?
Insurer: 18%
Manufacturer: 22%
Government: 20%
No one: 40%
And now, bioethicist Jacob M. Appel, MD, JD, weighs in with an excerpt adapted from his book, .
In 2014, 1% of the U.S. population accounted for 22.7% of healthcare costs, while the top 5% of users consumed 50% of all care, according to the Agency for Healthcare Research and Quality. Some individuals require even more expensive treatment: a retired prison guard named Slim Watson, suffering from a blood disorder similar to Edith's, spent 34 days in a North Carolina hospital in 2000 -- at a cost of $5.2 million.
How much to spend on any one patient is among the crucial issues at the center of the debate over healthcare rationing. Few patients like Edith or Slim can afford a multimillion-dollar hospital bill, and insurers cap payouts to avoid these extreme claims, so either the taxpayers or private hospitals will end up covering the costs. This likely means less money available in the healthcare system for other patients.
Former Oregon Gov. John Kitzhaber, an emergency room physician, has written of "visible" and "invisible" victims. If we cut off care to Edith, we must watch a visible victim suffer and die. That is highly unpalatable to most physicians and much of the public. Yet if we allow these vast sums to be expended on Edith's case, we will create invisible victims -- the patients who do not receive preventive checkups or complimentary flu shots, for example, and perish as a result. They are out of sight, so they may trouble us less. That does not necessarily mean that we have not done them wrong.
Philosopher John Rawls suggested that these questions of distributive justice be decided by pretending to wear a so-called "veil of ignorance": we must imagine a hypothetical world, one in which we have no knowledge of our own position or status, and then create rules that are most just for all concerned.
Many of us, possibly including Edith, would not design a healthcare system a priori that spends $2 million per week on a single patient at the expense of countless others. At the same time, Edith is a flesh-and-blood human being. Simply informing her that she must die because she costs too much seems anathema to many people at a visceral level.
Moreover, once we stop paying for care for Edith, there are many other patients whose care is expensive, even if it does not reach such newsworthy levels. Often organ transplants, for instance, are not "cost-effective," in the sense that the dollars spent on these patients, if expended elsewhere in the healthcare system, might preserve more lives for a longer time. Yet few ethicists advocate for abandoning organ transplantation or adopting a perfectly efficient utilitarian model of healthcare delivery that strives to achieve the greatest good for the greater number with mathematical exactitude. For many observers, Edith's case reveals a gap between the most rational choice (distributing money to save the most lives) and what feels just (saving the life of the human being in front of them).
Jacob M. Appel, MD, JD, is director of ethics education in psychiatry and a member of the institutional review board at the Icahn School of Medicine at Mount Sinai in New York City. He holds an MD from Columbia University, a JD from Harvard Law School, and a bioethics MA from Albany Medical College.
And check out some of our past Ethics Consult cases:
Liver Transplant for Alcoholic Baseball Legend?