Bound by the Rules: The Pitfalls of Resource Allocation Ethics
When ethics becomes too rules-based the thinking and making sense of complex situations can be obscured by techniques that declare some ethical decisions final and powered by precedent or guidelines. A stronger practicum that includes ethical tools designed to help people wrestle with complex dilemmas using rationality, logic, and compassion may lead to better ethical decision making.
1. Past Behaviors and The Maryland Pig Heart
The recipient of the first transplanted pig heart in a human was convicted in his 20s and served a prison sentence for an assault that seriously injured another person in his 20s, paralyzing him, and contributing to his early death at age 40. Accepted medical ethics calls for accepting the patient as is and ignoring certain aspects of personal history. For example, in the case of the recent pig heart transplant, Arthur Caplan et al. said, “Put aside his newly revealed criminal record, which is not morally relevant in selecting a subject in a dangerous experiment with a high likelihood of failure.” I disagree with the wording “morally relevant” here. I agree that a criminal record and many other past behaviors are not relevant to the medical selection process, for, if they were, there would be a lot more moral judgment by healthcare practitioners and hospital policymakers. Arguably, there already is quite a bit. But dismissing the criminal record as irrelevant to the medical team based on guidance and industry standards is different from dismissing it as morally irrelevant. Society in many ways makes moral choices about who gets what. Understandably, the doctors making the decision do not, and likely should not, consider any person’s past, but there is more to the analysis. Practitioners do consider people’s pasts inherently when they use medical criteria or quality life years.
Vulnerable People: Someone who spent time in prison may be vulnerable
The experimental aspect may change the calculus. Perhaps there was a scarcity of people willing to give it a try. The more pressing moral issue to me is why he became unfit for the human heart transplant. Are there people who used either wealth, reputation, connections, and pristine past behaviors who, like this recipient, failed to comply with medical orders at some point, and were they too banned from the human transplant list? (This candidate was deemed too “sick to survive” a human transplant, so clearly regardless of social-justice-style arguments, he was a medically appropriate candidate for the experiment and not the human transplant. The first such transplant would really never go to someone who would benefit from and be a likely candidate for a human heart, so any candidates would be people who are ineligible for a human heart.)
But was this recipient less equipped to follow past medical advice and then penalized for the failure? The noncompliance question is medical but also rooted in society. Hospitals are being equally judgmental whether social issues or other reasons push people into medical noncompliance. When noncompliance checks off a medical box, it may stem from a lack of resources necessary for compliance.
Noncompliance with past medical protocols itself is a poor tool for allocation, one that is judgmental but seems purely medical. People who try alternative approaches like diet and exercise rather than medicine can be deemed having failed to comply with medical advice. People also might choose not to comply in non-dangerous situations, like failure to finish a prescription drug, or miss appointments due to legitimate extenuating circumstances. And the relationship between prior noncompliance and future noncompliance is not certain. After transplants, significant follow up and caregivers are required. And people understand the importance of the post-transplant protocol. The way “noncompliance” sounds medical may absolve the person allocating organs of moral accountability for the ramifications.
A Scientific Win
Regardless, the willingness of the doctors and the recipient of the pig heart is likely a win for science and a path for figuring out whether this procedure will become a new standard or need some tweaking. The FDA emergency authorization seems quite appropriate, especially if the person had no other medical options and wanted to try this. The right to try is becoming increasingly important — a nod to the moral stance of protecting the vulnerable (the formerly incarcerated) should not stand in the way when both the doctors and the patient were in sync and prepared to move forward. Arguably, the “vulnerable” person is likely able to make independent decisions and may not benefit from being depicted as vulnerable and enduring the special treatment that comes with that. Hypothetically, if the authorization were for something that many people would imminently try, the right to try would need to be tempered for the health and safety of the broader population. Private health (one transplant) is quite different from public health and the ethics applied to populations.
2. Accountability, Vaccine Refusal, and Medical Care: The Boston Rejection
In ethics we need to consider just how costly vaccine refusal should be. The bioethics status quo is that increased medical risks are fair game in resource allocation. It tends to be acceptable to direct resources to those likely to survive (the most QALYs) over those with higher risks even when their risk profile makes them inherently vulnerable. That is, bioethics does not support the most vulnerable, and thus we see organs directed to younger people over the very elderly. A person less likely to medically benefit can wind up lower on a list for a scarce resource.
Predicted Quality Life Years
In Boston, a person was denied a heart transplant for failure to become vaccinated for COVID. The general US bioethics discourse nearly universally calls for accepting the patient regardless of vaccination status. Hospitals concluded that based on expected life years, they need to deny those at significantly increased risk of death by COVID, reflecting a utilitarian stance of choosing recipients with the best odds of long-term survival. Several vaccines have traditionally been required for transplants.
While at the bedside and in the ER, doctors accept such patients and use valuable resources on them, scarcity makes the transplant different. But these differences are precisely the reason that rules do not work well, and thinking does. Why are ER treatments, transfusions, a monoclonal antibody, and a ventilator morally different from a heart transplant?
A Changing Tide: Open to Discussion
One Canadian article reflects varying bioethicist’s viewpoints and suggests that it may be morally permissible to consider vaccination status. Udo Schuklenk, Ontario Research Chair in bioethics at Queens University believes people made autonomous decisions and should not be seen as victims of misinformation. They should be held accountable for their decision to not become vaccinated. Among two patients that are otherwise medically the same, there seems to be a growing willingness to consider using vaccination status in a care prioritization scheme if resources are scarce. The majority view nonetheless remains that any person may need emergency or general care due to some degree of poor judgment and there is no reason to judge them. Hospital policies generally reflect that view.
But I find the concept of acknowledging and discussing more accountability in the aspects of health that concern choice a positive. If we were to put the unvaccinated at a disadvantage, what might that mean for those who suffer from obesity or have lung cancer from smoking? Generally, at the doctor’s office, treatment without judgment is preferred and meets the industry ethical standard. People deserve respect when they seek care. But the door to accountability discussions may be cracked open a little. There is no need for harsh judgment, nor for people seeking care to feel guilty, but perhaps positive incentives can come from the new phenomenon of COVID-unvaccinated people interacting with health care. The discussion of personal accountability seems nearly closed at the hospital level. At some level, whether government or hospital system policy, incentives to be healthy can be improved, although punishments or financial penalties for poor choices remain controversial.
Losing the spot on a waitlist for a heart seems harsh, although medically valid. But society may have other ways to foster accountability. Quebec is going to fine the unvaccinated, which seems fair as they may be costly to the system and they pose a risk to themselves and others. A fine seems ethically better than refusing them a treatment when it is medically acceptable to provide one.
Critical Thinking: The Ability to Flesh Out the Issues
My broad goal in critical thinking and bioethics is not to categorically deprioritize based on vaccination status or criminal history, nor is it to condemn such a prioritization scheme (although admittedly, I do not like to penalize people based on their past), but it is to be able to talk about why and to identify the moral differences in the many complex scenarios. I find the degree to which an unvaccinated person was swayed by rhetoric to be quite important. I think a person who has been criminally held responsible for an action deserves a clean slate, especially when seeking care, but in a public health emergency, or with a very scarce resource, it may turn out that the only criterion to distinguish among similar candidates after all medical criteria are exhausted is a past action. At that point, is a lottery morally superior to evaluating a person’s past—I would vote lottery.
3. Allocating Scarce COVID Treatments: Evusheld
The allocation of a new COVID drug that could allow immune-deficient people to build immunity brings up another commonsense issue. Most people may agree that policy can save healthcare practitioners from making decisions about equity, equality, access, and choice, all of which arguably belong in social sciences class or policy roundtables and not at a bedside. Yet the US grapples with allocation and hospitals and doctors’ offices may ultimately be the decision makers. One obvious question about Evusheld, a drug to deliver antibodies in those otherwise unable to make them, is its origin and availability: Why is it scarce? The federal government bought 1. 2 million doses of the drug while about 7 million people would have been eligible for it. It would be interesting to know whether the government could have bought more, or resources could have been directed toward increased production so that the immune compromised would not be playing musical chairs. And can consumers purchase the drug directly? Why is the federal government the sole distributor?
But since there is not enough, it also bothers me that anyone would experience guilt for getting their doses while others cannot. Access to the drug for the immune compromised may involve pulling strings or even traveling to another state. Accepting a dose is not necessarily a moral issue — survival is instinctual.
Bioethics is like the old threat to send leftover food on the plate to starving kids in Ethiopia. Unused doses would be a waste and they may not end up going to anyone more worthy. New medicines are unlikely to be the answer to past social injustice despite the altruism of prioritizing the poor or the vulnerable. There are many other ways that medicine could help resolve past injustices. But once distributed to organizations delivering the doses to patients, the doses must go to the clientele. The pool of those eligible, to me, equals the pool of those who deserve the medicine. In many settings, the venue for a dose likely has a client base that is somewhat homogenous in socioeconomic status. (A concierge medicine group will tend to have exclusively wealthy patients while a clinic run by a public health department may tend to have a low-income patient base. That is, if you do not go get your concierge dose, another wealthy person will. If you do not get your public clinic dose, another person much like you likely will.)
When COVID vaccines were first available, hospitals were strapped by serious rules about vaccine distribution by age or other criteria, and doses sat unused when institutions did not have the expected demand in a given age group. Even with true scarcity, it is not a zero-sum game. Innovation, like the new drug and the pig’s heart, will present more options. Policy can incentivize production of needed medical treatments. I find that people often use the terms “scarce resources” and “allocation” as an answer rather than a question. Quick checklists to rank people’s medical conditions are great for hospitals, but they are not the full moral story. Formulas combining age and medical conditions are fraught with moral judgments. Preparing for a medical tie highlights the opportunity for ethical reasoning and argumentation. Allocation is an ethics starting point: even if the chips fall according to set rules, the moral justifications remain unsettled. COVID vaccination status is wreaking havoc on the rules, an opportunity for further complex thought.
Is it ever ethical to store something scarce that could be distributed?
Policy can incentivize production of needed medical treatments. Are we too lenient in expectations—or do we expect too much from innovation or government?
Is first-come first-served a better system in some cases, some locations, or some circumstances for speed and efficiency, especially with vaccines?
Policies from the federal government, state, clinics, hospitals, and doctors’ offices are all different. I argue that is not necessarily a bad thing.
Among medically equal candidates, what criteria should be permissible when resources are very scarce or is lottery the best solution?
Social situations that led to medical conditions underlie medical criteria. How can allocation schemes be more straightforward about the degree to which they reflect past injustices, difficulties complying with care instructions, and societal disadvantages? Fairness would call for eliminating injustice in the allocation scheme, but using allocation to remedy past injustice is tricky as it deprives people who did not experience past injustice of the ability to access the scarce resource.
How should social justice work into allocation schemes? Is a system that seeks to repair past injustice appropriate at the government level but not in the waiting room? In many waiting rooms, the similarities outweigh socioeconomic, racial, and ethnic differences and patients see their commonalities rather than their differences. (Democratizing the sick may be better than using medicine to remedy the past.)
I advise caution using existing medical problems against vulnerable populations in the allocation of scarce resources. Yet in populations without special vulnerabilities, if people deemed to have made poor choices want scarce resources, the moral calculus is different.