Humanize From Discovery Institute's Center on Human Exceptionalism
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Patient Care

elder with blue mask
elderly man with face mask looking out the window in pandemic quarantine

What If We Ignored Those Most Vulnerable to COVID-19?

“We locked down America with relative speed in March and we avoided all the worst predictions of the potential impact of the coronavirus, but we struggled to reach consensus anywhere on how to responsibly open back up.” If we had to write the one sentence history of the COVID-19 pandemic today, that would be something like America’s version. We don’t know how things will continue to play out, but what’s clear at the moment is that state and local leaders appear to be paralyzed. Unfortunately, those bearing some of the greatest costs of this ruling class paralysis aren’t likely the first to come to our minds. Their story is not told in the TL/DR history of this time. We’re witnessing the failure of the managerial bureaucracy when leaders like New York’s Gov. Andrew Cuomo direct that COVID-positive patients be placed amongst not-yet-infected vulnerable populations. This failure to protect our elders, owing at best to incompetence and at worst to willful indifference, is not limited to New York. Gregg Girvan and Avik Roy of the Foundation for Research on Equal Opportunity (FROEPP) report on the truly grim national impact of COVID on our elders: According to the Centers for Disease Control and Prevention, 5.1 million people live in nursing homes or residential care facilities, representing 1.6% of the U.S. population. And yet residents in such facilities account for 40 percent of all deaths from COVID-19, for states that report such statistics. … On the flip side, it would appear that elderly individuals who do not live in nursing homes may be at a somewhat lower, while still significant, risk for hospitalization and death due to COVID-19. States and localities should consider reorienting their policy responses away from younger and healthier people, and toward the elderly, and especially elderly individuals living in nursing homes and other long-term care facilities. FROEPP is providing vital perspective on a policy failure that risks becoming an elder abuse crisis, insofar as our political leadership continues to fail in repurposing resources to protect those populations most at risk. On Twitter, Avik Roy addresses New York’s apparently low numbers: “A lot of people are speculating that NY state’s numbers are so low because NY counts as a hospital death a nursing home resident who dies in a hospital. We haven’t confirmed that this reporting approach is unique to NY. … But for those who are debating the merits of continuing full lockdowns, it’s worth considering the fact that 39% of #COVID19 deaths are occurring at self-contained residential facilities that host 1.6% of the U.S. population.” It’s worse when looking at the city level rather than the state level. ABC7 in Los Angeles reports that “51% of COVID-19 deaths in LA County were residents in ‘institutional settings’”. Instead of focusing like a laser on this aspect of the pandemic and how best to mitigate it, and instead of allowing all who feel able to do so to return to their businesses and their jobs, California’s political elite spent a significant portion of this week dealing with Alameda County mandarins attempting to keep Tesla, the state’s only automaker, shut down. We’re wasting this precious time. To the degree that lockdowns remain necessary, this time should be spent formulating plans to protect those populations most vulnerable for the foreseeable future. It should be astonishing that our political and media elite — so eager to lecture, so eager to tout their bona fides, so eager to proclaim the need to “believe science” — are ignoring what we know to be true about the populations most impacted thus far, and thus most deserving of our focused response. Dr. Charlie Camosy, author of Resisting Throwaway Culture: How a Consistent Life Ethic Can Unite a Fractured People, gets it: How can we credibly speak about human dignity and the rights of marginalized peoples internationally when we fail to protect our own most vulnerable peoples at home? We must do better in living up to our principles. This virus is not going away. If you have a loved one in a nursing home or institutional care setting, consider sitting down at the kitchen table with your family to determine what it would take to bring your loved one home. I’d wager that many persons for whom institutional care once made sense no longer belong there. There likely will come a point at which the burdens and risk of such care will outweigh the benefits. Especially for those who may already have limited time left, wouldn’t it be better to share that time together and as a family, than leave them to die alone? When it comes to the failure of our political ruling class, we can only stare in amazement. But when it comes to the options available to us in our own lives to care for those we know who are most vulnerable, now is the time to act.

Photo by Helloquence
man writing on paper

Autonomy, Ezekiel Emanuel, and the Limits of Advance Directives

One of the lessons (wrong, it turns out) that Americans took from the Terri Schiavo fight goes something like this: “What made Terri’s situation so tragic was that she didn’t have a “living will,” an advance directive. If she had only had one of those, everything would have worked out fine.” Advance directives, more commonly called “living wills,” are simple enough documents. Aging with Dignity is just one of many organizations that offers a “simple” advance directive. You run through a list of treatments or care you do or do not want to receive in the future, putting pen to paper, and viola! — you can now rest easy knowing your wishes will be respected should you no longer be able to speak for yourself in a critical moment. Anyway, that’s the idea. However, Aging with Dignity shares the same fatal defect that characterize many advance directives, which is that their primary concern is with preserving autonomy—a patient’s decision making capacity. Does it sound strange to describe this as a defect? It shouldn’t. Autonomy — meaning our independence, our lack of reliance on others, our ability to control of own lives and our circumstances — is good and important, but it is not the sole good of either life or medicine. We balance a whole constellation of goods in our daily lives. Our autonomy is one of those goods, but we make a mistake when it comes to medicine by acting as if our dignity cannot be maintained if we’re compromised in our independence of action. While we should be concerned about preserving our autonomy, we should also recognize that to be human is a far greater thing than to be free from relationship with others. Indeed, it’s in our healthcare encounters that we should perhaps be most willing to prioritize other goods, like trust and obedience, to physicians, nurses, and family members who make have to make decisions for us in times when we cannot respond ourselves — and who may have far greater expertise and insight into what is called for. (At the same time, there’s the grim reality that there are some physicians and bioethicists who more or less pay lip service to the good of autonomy, but turn on a dime and will violate an autonomous decision when the choice of the patient or family doesn’t suit them. This is the “futile care” bioethics controversy.) Enter Ezekiel Emanuel, an architect of the Affordable Care Act and adviser to Joe Biden’s Public Health Advisory Committee, who inadvertently highlights the limits of advance directives in an interview with Philadelphia Magazine: You wrote a piece in the Atlantic a few years ago saying you wanted to die at 75 — or at least you’ll start resisting certain kinds of medical treatment then. Should that paradigm influence how we deal with COVID-19 patients right now?  No. First, of all, let’s be clear, that article — the article I’m most infamous for — was a personal preference. Very explicitly. This was not a policy recommendation. This is about how I’m thinking about my life. And it was a call for other people to think about their lives and come to their own conclusions. On the other hand, we now can see … you need to think about your advance directives. Do you want to be intubated? Lots of people say, “I don’t want to be on a machine.” Well, what is a ventilator but a classic machine? So everyone needs to fill out an advance directive. Second, you’ve got to understand, you may be dying alone. And so you need to begin thinking about what that final word is and commit it to paper. Because your loved ones may not be present for you to say it. In this time of pandemic, physicians across the country are having to make critical and time-sensitive decisions — ethical judgment calls — about what a person whose life is at risk needs to survive a moment of crisis. Emanuel is right that the question, “Do you want to be intubated?” is an important question. But especially with respect to this pandemic, it’s a question most appropriate for your physician to be making based on the specific circumstances you are confronting in a specific moment in time. Is it prudent, therefore, for one to fill out an advance directive where one simply checks a “yes” or “no” box next to a sentence like, “I want to be kept alive by machines”? Advance directives like Aging with Dignity’s, which promote a sort of “choose your own adventure” approach to questions of life and death, may appear to be ethically neutral but in fact obscure rather than underline vital ethical dilemmas. How easily one might cause their own premature death if they do not think long and hard about what they’re doing when they sit down to consider an advance directive. Are you potentially handcuffing your physician from caring for you in an ethical way? Are you at risk of denying yourself the best treatment called for in a particular situation, the specifics of which you necessarily can’t foresee? Are you making judgments based on knowledge and experience, or are you at risk of making decisions from a place of fear? I know many who would agree with Ezekiel Emanuel’s belief that “everyone needs to fill out an advance directive.” The good news is that we don’t need to rely on the Aging with Dignity model. In fact, we can achieve much greater certainty and peace of mind by simply avoiding the weak and compromised question and answer templates that would have us making guesses about hypothetical crises or scenarios. What we want is a type of advance directive known as a “healthcare power of attorney,” or “durable power of attorney for healthcare.” A healthcare power of attorney allows us to appoint someone who will act as our most trusted medical decision maker if we end up in a situation where we cannot speak for ourselves. A healthcare power of attorney Read More ›

Female doctor sitting on couch with old woman

Coronavirus: Triage if Necessary, Health-Care Rationing, Never

A hard look at the worst-case scenario for medical treatment.

With the raging coronavirus pandemic threatening millions with infection, people are rightly worried that we could face the awful circumstance in which there are insufficient life-saving medical resources available for all catastrophically ill patients needing care. If that dark day comes, decisions will literally have to be made as to who among the seriously ill will be given an optimal chance to fight for life under intensive medical care, and who may have to face a likely death, albeit under palliative care. All over the country, doctors, bioethicists, policymakers, hospital administrators, and media commentators are discussing how to make such extremely difficult decisions if they become necessary. That’s proper and fitting. As the old saying goes, hope for the best and plan for the worst. Moreover, it is wise to create a well-thought-out plan that can be followed consistently in awful contingencies to prevent ad hoc approaches that invite life-and-death decisions to be based on cronyism, discrimination, or other unjust non-medical factors If doctors must refuse needed care, morality and maintaining the people’s trust require that they always be executed in a manner wholly consistent with upholding the equal moral worth of all patients. In other words, decisions to withhold or withdraw treatments — chance for life or likelihood of death — should never be predicated on invidious distinctions, such as race, sex, wealth, age, sexual orientation, disability, etc. Or to put it another way, each patient who enters the regrettable to treat or not to treat decision-making process must do so as the inherent equal of every other patient. In this regard, we should distinguish between “triage” — which is ethical — and “health-care rationing,” which, as I use the term in this article, is not. Triage involves doctors or other medical professionals assessing the differing chances for survival among patients who would all be eligible for extensive treatment, but all of whom can’t be served because of resource limitations. In that circumstance, those patients with the greater likelihood of surviving the crisis because of the intervention will receive priority in receiving treatment over those more likely to die even with care. In this sense, triage is a medical determination, not an ideological one. It treats all patients as equals and bases hard decisions on the same objective criteria of assessing survivability regardless of the personal characteristics of each person. A subset of survivability has to do with the number of years a patient is likely to live if they receive the care. Assume three patients arrive at a hospital emergency room who are all likely to survive with an intensive intervention, but there is only one available ICU unit. The patients are ages 10, 45, and 80. In this awful circumstance, all other factors being equal, the 10-year-old should receive the intervention because he or she is likely to live more years than either the 45- or 80-year-old. Now assume that two coronavirus patients need ICU care, with only one such bed available. Both are equally likely to benefit. One has terminal cancer and will probably die within a year, while the other patient is otherwise healthy. In all likelihood, the healthy patient would receive the care over the dying patient, again not because the healthy patient’s life is deemed to be more important but because of the likelihood that patient will experience more years of living after recovering. Note, we are not talking about judgments based on the supposed quality of those years. A disabled 10-year old would still receive priority over the able-bodied middle age and elderly patients unless the disability were so severe that it would limit the patient’s odds of survival. In this way, the judgments are based on objective criteria, not decisions about which patient life has greater value. Now, let’s contrast the triage approach with discriminatory health-care rationing. Rationing is a very broad concept, of course, but as I am using the term in this article, it means medical discrimination, e.g., offering medical care to some patients but withholding it from others based on an ideological approach that sees some lives as being more important or as having greater value than others. Age-based rationing is a classic example of this unethical approach. Thus, in parts of Italy, all patients with coronavirus over age 60 are reportedly being refused intubation — regardless of the likelihood that the treatment would save the life of a particular patient. This is inherently discriminatory and unethical. As Dr. Daniel Sulmasy wrote recently in the New York Daily News: Older age or disability might be factors in determining the chances that a patient will benefit from treatment, but age and disability per se should not be reasons to withhold treatment in the first place. Our judgments about who gets treatment should be based on whether the treatment is worthwhile, not on whether the patient is “worthy” of treatment. The “QALY” system of rationing also should never be allowed because it is inherently discriminatory and crassly utilitarian. QALY stands for “quality adjusted life year,” a system that presumes that all lives are not equal. Here’s a brief — and very simplified — overview of how the QALY system might operate in the current crisis: Let’s say Mark and I both need ICU care to survive the virus, but there is only one bed available. At age 70, I am able-bodied and generally healthy, and if I survive the crisis, I could be expected to live another 10 years. Under the QALY system, my 10 years of physical life expectancy might be measured as, say, eight QALYs (with a two-year demerit for the potential losses associated with advancing age). Now, let’s say Mark is 65 and has diabetes currently being successfully treated. A few years previously, he was injured in an auto accident, which left him using a wheelchair and in continual pain only partially controlled with medication. Under a QALY approach, his life could be deemed of lower “quality” than mine because of his illness and disability. Even though coronavirus treatment would be expected to give him more years of life than me, he might be denigrated as having only Read More ›

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In Canada, No Need to be ‘End of Life’ in Order to End Life

The Canadian government wants legal homicide to be available for generally healthy, non-terminal persons. Canada wants a future where a physician will be expected to hand over a fatal overdose or perhaps even authorize a lethal injection for, literally, children. Read More ›