LIFE IN THE END ZONE: A discussion of topical issues for anyone concerned with the final phase of life by Muriel R. Gillick, MD
February 28, 2018
This week, I was interviewed by Rabbi Richard Address on his program addressing the consequences of the longevity revolution for baby boomers and their family. The interview can be accessed on the site, Jewish Sacred Aging.
February 19, 2018
Good for Nothing?
For over thirty years, we’ve been arguing about when medical care is “futile.” The debate began in the 1980s, when the most common question faced by hospital ethics committee stopped being, “do doctors have to do this procedure, even if patients or their families don’t want it?” to “do doctors have to do this procedure if patients or their families demand it, even if the doctors don’t want to?” One case that attracted a great deal of attention was that of Helga Wanglie, a woman in her late eighties who was in a vegetative state after hip surgery and whose physicians wanted a “DNR” order. Helga’s husband, speaking on her behalf, disagreed. Ultimately, the case ended up in the Minnesota courts and was settled based on a technicality—the hospital sued on the grounds that the husband wasn’t an acceptable surrogate, but the court found that he was. The issue of what qualified as “futile” treatment was largely skirted.
The bioethics community then struggled to define futility, with Schneiderman, Jecker, and Johnson proposing what appeared to be a quantitative definition: if the treatment in question has failed in the last 100 cases, then it’s futile. There were several problems with this approach. First, it sounds nice and scientific, but nobody was collecting data on what worked in whom. Even if we had information about 100 people, they were rarely identical in what might be crucial ways—is an 85-year-old with advanced dementia, diabetes, and heart disease who has a cardiac arrest equivalent to a 75-year-old with cancer? Secondly, what exactly was meant by a treatment “failing?” Helga Wanglie’s doctors said a ventilator was “failed” treatment because it could not restore the patient to her condition before she was hospitalized—it wasn’t going to allow her to walk out of the hospital and go home. Her husband said a ventilator was “successful” treatment because it sustained Helga’s life. The answer to whether a treatment would be futile turned out to be, “it depends.” It depends on what the treatment was supposed to accomplish. The net effect was that in most of the country, the word “futility” was abandoned in discussing treatment options.
The exception was Texas, which passed an “Advance Directives Act” in 1999, widely known as the Texas “Futile Care Law.” It spells out a process by which physicians can assert that a treatment is futile and need not be given, as well as a process for adjudicating any disputes between physicians, patients, and families. Ultimately, the physicians have the final say.
Despite the consensus in the bioethics community and the near consensus among state legislatures that discussing futility was unhelpful, physicians have continued to believe that various treatments should not be provided in certain circumstances because it is morally wrong. To address the persistent discomfort physicians and nurses have felt administering what they regard as “futile” care, the American Thoracic Society recently came out with a position paper called “Responding to Requests for Potentially Inappropriate Treatment inIntensive Care Units.” This policy statement was endorsed by four other professional organizations. Another guideline, this one published by the Society for Critical Care Medicine, addressed what it called “non-beneficial” treatment. The originators of the quantitative futility concept, Schneiderman, Jecker, and Jonsen, continue to believe that “futility” is the best way to describe the class of treatments under consideration.
So, which is it: Futile treatment? Potentially inappropriate treatment? Non-beneficial treatment? None of the above?
The issue, it seems to me, is whether the problem is fundamentally a technical one or an ethical one. “Futility” advocates want to define the problem (perhaps surprisingly, since its principal supporters are ethicists) as a technical one. The proponents of “potentially inappropriate care” seem to acknowledge that the issue is ethical (again surprisingly, since its main advocates are physicians). It would be lovely to make the dilemma vanish with a technical solution! If only we could state precisely when CPR or a ventilator or dialysis or chemotherapy cannot work to achieve whatever specific goal it is supposed to accomplish. Then we wouldn’t have to ask whether it’s the right approach. Surely, we can all agree that if something cannot work, like antibiotics for a viral infection or apricot pits for cancer, providing such a “remedy” is inconsistent with professional standards.
Unfortunately, such cases of what has been called “physiologic futility” are relatively rare. More common is the situation where an intervention is deemed by medical professionals to be inappropriate because, in their estimation, the burdens outweigh the benefits. This conclusion rests on an understanding of the clinical situation, but also on a moral judgment.
The desire to convert what is quintessentially an ethical dilemma to a technical one is understandable. It relies in large measure on the recognition that many medical decisions do have a technical and an ethical component, and that often, it is up to the patient (or the patient’s surrogate) to address the ethical piece. But that awareness does not preclude professional ethical standards playing a role as well. The debate about physician assisted suicide, while complicated because of varying legal standards, is to a large extent about whether physicians regard ending the life of a suffering, terminally ill patient as consistent with their ethical norms. The widespread recognition of the responsibility of physicians to care for patients who are criminals or other individuals they may find personally objectionable is based on the ethical code of conduct of the medical profession.
Recognizing the patient’s values and shaping medical care to be consistent with those values is desirable—when the patient’s ethics and those of the medical profession do not irreconcilably conflict. It’s important to point out that I’m not just talking about the idiosyncratic views of a given physician—the personal ethical values that have been put forward as a justification for failing to provide contraception. I’m talking about an ethical standard of care set by the profession as a whole. The American Thoracic Society statement on “potentially inappropriate care,” while not perfect, is an effort to define what the profession regards as appropriate—acknowledging, through its caveat about “potentially inappropriate” care, that there could occasionally be circumstances where the profession’s norm is not applicable.
February 04, 2018
Who Will Care for Me When I am Old?
In an important article in the NY Times this week, journalist Paula Span points out the dire consequences to the nursing home industry if the Trump administration ends “temporary protective status” for refugees from countries such as Haiti and El Salvador. These countries are where many of the poorly paid, hard-working, desperately needed aides who care for nursing home residents come from, especially in certain states including New York, California, and Florida.
But there’s even more at stake in the immigration debate than the devastating but short-term problem relating to temporary protective status. Trump is promoting what he calls “merit-based” immigration: determining who can move to the U.S. with the hope of ultimately becoming a citizen based on what they will “contribute” to American society. That’s not necessarily a bad idea—although it’s important to preserve the distinction between refugees and immigrants, where refugees see the U.S as a haven from the discrimination and persecution that they face in their home countries, and immigrants see the U.S. as a land of economic opportunity as well as political freedom. But if we are going to accept immigrants based on their potential benefit to American society, who will decide what counts as a benefit?
The U.S. does not just need brilliant scientists and engineers. And in fact, robbing other countries of their elites may be destabilizing for those countries and not, in the long run, beneficial to the U.S. The U.S. needs unskilled workers such as nursing assistants—people who are in short supply at present and the need for whom will soar in the coming years as the number of people over age 85 (the group in greatest need of personal care) triples.This past year, 45,000 nursing assistant job openings went unfilled. These are not jobs that Americans are clamoring for: the pay is poor (the median wage in 2016 was $12.34 n hour), injury rates are high, and opportunities for advancement are meager.
If standard economic models were applicable to this situation, we would expect wages to rise, attracting more workers. But nursing home revenue is determined in large measure by how much state legislatures allow Medicaid to pay nursing homes, and financially strapped states are not increasing their Medicaid budgets. As a result, nursing homes will compromise patient care or close before they increase wages.
Who does take a job as an aide in a nursing home?
The 600,000 people who take care of some of the oldest, most vulnerable members of our society are largely black women; 20 percent of them were born outside the U.S.
If immigration reform means entry to the U.S. will be based on who has the most to give, we better make sure that poorly educated but caring and conscientious women are our priority.
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