The Ethics of Healthcare Rationing

The call comes in the middle of my clinic session at the hospital in rural Kenya where I work. I apologize to the patient in front of me and answer my phone. It’s the emergency department at the hospital in rural Kenya where I work.

“Hello daktari, can you come? We have a critical patient in casualty.”

I run down the street to the hospital to find an elderly gentleman lying in one of our emergency room beds. He is clearly struggling to breathe. I learn that he has a history of diabetes and hypertension; he developed a headache and paralysis on one side of his body two days ago. Now he is unconscious with a low oxygen saturation, even with a nonrebreather mask on. The staff are looking at me, wondering what to do.

I sigh. “Admit him to the general ward.”

My hospital has an ICU with two ventilators. His condition is generally not compatible with continued oxygen perfusion into the brain. But on the days when the ventilators are not already occupied with patients, we have a policy directing who cannot be intubated and put on a ventilator: No patients with tuberculosis or AIDS. No patients suffering an acute stroke. No patients with end-stage liver disease. No patients with metastatic cancer. It was not easy to come up with these rules, nor is it always easy to enforce them. But it has to be done.

Suffering and the Baconian project

All healthcare is rationed one way or the other. We do not like to think of it this way—often, great pains are taken to disguise this rationing, if we can. But 15-minute appointment slots, pre-authorizations, formularies, and QALYs are how people try to apply some sort of rationality to their rationing. The alternative is a system found across the world wherein unscrupulous health care providers try to scam as much money out of whoever can pay for it. The free market is great for elective procedures like LASIK; there’s no evidence it works for any other aspect of the health system. When there isn’t some kind of centralized control over how we choose to use our health care resources, rationing is done by income level—and even then, the rich only get the kind of care that can turn a profit.

Thus, we ration. But how ought we to ration? The most straightforward plan would be to act in ways that reduce suffering. Our imaginations have been shaped by the Baconian project—the moral imperative to use technology in order to relieve suffering—so thoroughly that it is hard to imagine any other criterion by which we ought to practice medicine. Indeed, in the days before this pandemic hit it was still conceivable that what Gerald McKenny calls a “techno-utopian” vision of life is possible, and once we manage to push back hard enough on COVID-19 such a vision will once again seduce those who have been formed by it.

The Baconian project imagines that with just the right technological advances (and, usually, the right politics to equitably distribute them to all), we really could just keep pushing back suffering until it’s gone. Even if we cannot totally eliminate it (though the transhumanist fantasies really do seem to suggest this), we could keep approaching such a goal asymptotically: why, just look at how far we’ve come in the last 100 years! Another few decades of advances comparable to the polio vaccine and we might really get cooking. The right science, applied by the right people, in the right systems, will adequately relieve human suffering.

Of course, this isn’t how it works. Having shaped our imaginations and narrowed the horizons of what we think is good, the Baconian project wreaks havoc in three different ways: lashing out with violence against suffering that it cannot relieve, mocking suffering that may not be meaningless, and reshaping our understanding of how to deal with suffering. In all of these, it takes the human condition and its limits as bad things that we ought to use technology to break rather than wisdom to remain within.

The Baconian project hits a snag when it encounters suffering that cannot be ameliorated. Thus, situations for which no technology can (or perhaps will ever) provide a way out have to be eliminated and the sufferers themselves eliminated. The simplest way to do this is to murder the potential sufferer before he or she is born, even if there is only a chance that they will be born with an incurable mental or physical defect.

However, actively euthanizing or assisting in the suicide of sufferers is also an acceptable choice to those who assume all suffering is meaningless and the job of medicine is to eliminate it altogether. As genetic modification becomes more plausible in the future, it is likely that this will be the next frontier in pushing against suffering. One sees this in more subtle ways throughout society when people who are mentally or physically disabled are excluded or shut away rather than included as part of a community.

The question of how suffering can be meaningful is a deeper one than can be explored in this essay, however, it suffices to say that the Baconian project does not really consider the question to be valid. The idea that pain may be a means of maturing or suffering an opportunity to contemplate our fragility before God is abhorrent to a techno-utopian vision of the world.

Faced with suffering that cannot be meaningful, people are not only channeled towards the more macabre options in the aforementioned paragraph, but also cannot appreciate how suffering can be good or how self-sacrifice and mutual dependency are woven into the fabric of human community. The ideal human, according to the Baconian project, is an independent agent whose ability to understand and consent is fundamental to their personhood.

Most insidiously, the Baconian project turns our problems into proverbial nails for which there must be a technological-professional hammer. We often complain in medical education that health professionals in training get used to seeing their patients as collections of organ systems. Furthermore, doctors with very little training in how to talk to patients about problems that cannot be fixed with surgery or drugs (that is to say, most doctors and most problems), get into the habit of calling a social worker any time a patient in the hospital has some sort of social problem. The problem may or may not be within the realm of the social worker’s training, but if it doesn’t lend itself to a billable diagnosis and treatment plan then it is in some nebulous “social” realm.

There is always an unconscious (or sometimes conscious) push to professionalize everything, assuming that if one got proper treatment from the rightly trained scientific mind (and often a drug to go with it), the sufferings we experience would be fixed. One sees this in Christian circles with a recent emphasis on pushing anyone who suffers from any sort of mental illness symptoms towards a trained counselor and/or psychiatrist, never minding that such resources are neither available to a wide swath of the world’s population nor appropriate for many people who would probably just like to talk to their pastor. (Counseling and medication work less than half of the time for people suffering from honest-to-God DSM-diagnosable depressive disorder.)

Consider the way in which schools are generally expected to use an army of professionals to compensate for the problems children experience at home: there is no such thing as a parenting licensure system and no chance for professionals to get involved unless a child is being abused or neglected, and so techno-utopia has to find another way to get its claws in.

One could also look at the rise in interest towards manipulating one’s own hormones and sex organs as a function of living in our cultural-spiritual milieu; for any distress within my body there must be a pill or knife to deal with it. The more that we get used to submitting our problems to medicine, the more that medicine looms large in our minds as the solution to everything.

All of this is to say that our ideas about what it means to be good medical providers have been indelibly shaped by the Baconian project; we assume that suffering must be ameliorated and we are distraught when it cannot be. We are blessed to live at a unique time in history when a great deal of suffering can be relieved by medical means, but this gift creates despair when a situation arises in which it cannot be used.

What is medicine for?

There is a lot that Bacon got right; technology and medicine are gifts to be used for the relief of suffering (and, as he would note, for the glory of God.) One of the more difficult aspects of the Baconian project is the fact that its practical implications for many people in the field of medicine do not deviate considerably from a Christian approach to ethics. It is how we consider other goods besides the relief of suffering and the extension of life that distinguishes us from Doctors Faustus or Frankenstein and their modern-day inheritors. Furthermore, we also recognize and respect the limits of human nature as they are given to us by God, seeking to make the most of what we have been given without exceeding them.

Crucial to this understanding is a familiarity with a term Gilbert Meilaender has called “the arc of life”. I described this in more detail here, but the briefest description is this: Every human being follows an arc from complete dependence and vulnerability in birth to surrender in death, with whatever span of time in between reaching an apogee at some point. (The Baconian project, of course, takes that apogee as the normatively human and then judges all other persons by it, with disastrous effects.)

Medical care is meant to help people move along that arc, trying to bend it just a little upwards to flourish all the more or intervening drastically if it looks like the arc is going to be prematurely cut short. For those who are on the downward curve, medicine seeks to relieve suffering and help people to live out their newfound dependence with grace and dignity. All the way along, we are constantly reminded of our limits and accepting of our finitude.

These limits, our finitude, are not always easy to discern as some have looser boundaries than others. It is good, for example, to maximize our health by exercising regularly and eating healthy food, but an obsession with these activities can and does lead to all sorts of eating disorders or judging those who have less-than-perfect bodies. Health for any individual requires making the most of what they have been given, both in the genetic sense of what their metabolism requires but also in the historical sense of what illnesses they may have acquired or developed. Flourishing along one’s arc of life will look very differently for a woman with no health conditions and one who was born with Down Syndrome or one who developed lupus at the age of 17.

The Baconian project and Christian ethics alike will want to give the young woman with lupus immunosuppressants to reduce her pain and improve her ability to function in daily life, but the former will never consider that treatment failures or side effects could be anything other than setbacks on the way to approximating the human ideal. The latter leaves the possibility open that a thorn in the flesh may be part of a divine plan for maturity or simply a burden of living in a fallen world that must be carried to Jesus.

Beyond that, health is a matter of community. Human beings care for one another in families and communities and always have; everything from how we treat marriage to how we use (or abuse) the ecosystems we live into how we build our sidewalks to how easy it is to find a decent-paying job has consequences for individual health. It is impossible to think of health solely in individual terms; “social health” and corporate bodies of humanity are not merely metaphor but ways of thinking about our interdependence that reflect our given reality. As Pope Benedict XVI says in Caritas in Veritae:

To love someone is to desire that person’s good and to take effective steps to secure it. Besides the good of the individual, there is a good that is linked to living in society: the common good. It is the good of “all of us”, made up of individuals, families and intermediate groups who together constitute society. It is a good that is sought not for its own sake, but for the people who belong to the social community and who can only really and effectively pursue their good within it. To desire the common good and strive towards it is a requirement of justice and charity. To take a stand for the common good is on the one hand to be solicitous for, and on the other hand to avail oneself of, that complex of institutions that give structure to the life of society, juridically, civilly, politically and culturally, making it the pólis, or “city”.

The more we strive to secure a common good corresponding to the real needs of our neighbors, the more effectively we love them. Every Christian is called to practice this charity, in a manner corresponding to his vocation and according to the degree of influence he wields in the pólis. This is the institutional path — we might also call it the political path — of charity, no less excellent and effective than the kind of charity which encounters the neighbour directly, outside the institutional mediation of the pólis.

Thus, when we ask the question of how we ought to structure our health care systems and ration the limited resources we have, we are forced to think in two very different and sometimes competing ways: helping individuals thrive along their individual arcs of life while also working as communities to create the conditions in which no one person or group of people is neglected in their health among the whole.

For example, a good medical system will have a certain number of ICU beds available for those who need one should the emergency arise. A system which builds one bed (with trained doctors and nurses to take care of the patient in it) for every five members of the population will waste precious resources on equipment most people will never need; a system that only has one bed for every million people will find itself burying people who otherwise could have lived.

It is wisest, under ordinary circumstances, to invest in primary care systems that take care of common diseases like diabetes and hypertension while allocating a smaller but still significant portion to the sort of specialty care and research that helps individuals like our aforementioned patient with lupus to thrive despite their rarer conditions.

There are mathematical calculations that can be done to help determine optimal numbers for any given population, but these are useless in the face of a global pandemic causing severe respiratory distress in affected patients. Our greatest wisdom may be able to give us the industrial and technological capacity to adapt quickly to these sorts of emergencies, but we will never be able to prepare against all contingencies.

Nor we will ever escape the tragic scenarios that we face on a day-to-day basis even in developed countries in the best of times: children with cancer, severe injuries that lead to death or disability, elderly persons with severe dementia, or diseases that we cannot fully explain or adequately treat. In all of these cases and more, we are forced to choose what to do and pray that in our limited wisdom we can do what is good with what little we have.

How should we then ration?

As COVID-19 storms through communities across the world, people everywhere are asking now how we ought to ration potentially life-saving care like ventilators and Christians are giving thoughtful responses. In hospitals like the one I work in, decades of injustice perpetuated by various entities at home and abroad make these scenarios all the more common. A woman cannot stand up straight because her anemia is so severe and there is no blood to transfuse, but her cervical cancer might have been prevented had there been a free screening program in place.

Meanwhile, her four children ache from hunger since their mother is in the hospital. When a unit of blood comes to the hospital, we are often forced to decide: should we give it to someone with a cancer that will likely kill them in 3 months anyway, or give it to an otherwise healthy man who got drunk and fell off his motorcycle? Should we intubate the elderly man with a severe stroke, or wait in case a young mother with preeclampsia develops fluid in the lungs and needs the ventilator? We can (and ought to) work towards a world in which these questions are asked less often, but we cannot hope to eliminate them until Christ returns.

In the meantime, what medical professionals are given is a limited, fragmentary, and fallible knowledge that over time and with experience becomes wisdom that can be applied in these scenarios. Every decent health professional who works with patients in any kind of acute care setting learns to intuit the severity of illness and appreciate the patient’s history; if one has never met someone before it is not easy to know where on the arc of life someone is, but a judgment can be formed.

It is in that judgment that rationing of emergency care lies; not as a blanket discrimination against certain conditions or age (though guidelines can and do exist based on experience like our hospital’s rule about not intubating tuberculosis patients) but as a heuristic for seeing who is most or least likely to benefit from extraordinary interventions.

This is not merely cold utilitarianism, but an acceptance of our limits. In general, medicine in developed countries ought to be rationing treatments based on their likelihood of efficacy; doctors have had to develop campaigns like Choosing Wisely just to get their colleagues to stop prescribing treatments that have been proven to be ineffective. Judgments that don’t use the data of utility are no more than blind guesses, while judgments that rely only on number cutoffs are incomplete and deceive themselves. My hospital has its policy, but each case is still decided individually because some health conditions not mentioned in the policy present themselves where intubation would be futile and others explicitly mentioned in the policy could conceivably be excepted.

The Christian Medical and Dental Association has put out a preliminary statement on rationing along with other resources (scroll to the bottom of the page), which emphasizes “Those making triage and resource allocation should pay particular attention to the needs of at-risk and marginalized persons, including the poor, the aged, and persons with disabilities, and ensure that they are not denied access to the triage process.” This is very important. They also say that “These decisions should be impartial, based on standard acuity and short-term prognosis scoring systems, and not based on long-term survival prospects, age, or social value. These decisions must be the responsibility of a triage officer or triage committee and not the treating physician, when possible.”

While I appreciate their commitment to upholding the sanctity of the physician-patient relationship, the “impartial” criteria still often require a physician’s subjective judgment, especially in a day and age when someone could have acquired a diagnosis in the computer years ago that isn’t really applicable now. The official criteria also vary from state to state, which also means that physicians’ subjective judgments will ultimately be required.

Some readers may be disappointed that there aren’t clearer ethical rules for rationing in health care. Unfortunately, the clearest rules are that rationing is necessary, every situation is different, and the best criterion for use of any healthcare resource is its likelihood of efficacy—a subjective criterion if ever there was one, and all the more so in the face of a new disease. For the present situation, it seems acceptable to say that because age does help to predict the likelihood of benefiting from a ventilator, it could be used as one criterion among others. I have not found any evidence to suggest that severe mental retardation or a history of traumatic brain injury affect the likelihood of benefit; to deny these patients ventilators on this basis alone would be discrimination. (Though it is likely that rules about other pre-existing conditions that affect one’s chances of benefiting from a ventilator will disproportionately affect those with these conditions.) The availability of ventilators, the characteristics of the local population, and the comfortability of providers making these decisions all affect the sort of guidelines and procedures that hospitals might develop.

We ought to be working overtime to develop a sufficient number of ventilators in order that no one die for lack of one. (Subsequently those extra ventilators should be sent, along with appropriate training programs, to places that do not have enough ventilators for their non-pandemic times.) But even if we are able to do so, we will still always have to make prudential judgments about the sort of care that is good for the person in front of us. We will also always have to make prudential judgments about how to allocate resources for a broader population. This is what we have been given for the life that we have to do good, no more and less, and in its insufficiency we will find the life to come all the more sufficient and good.