Just Healthcare
Notes from a Family Meeting, Vol. 2, No. 10
Most editions of Notes from a Family Meeting are about things I’ve been pondering for a while. This one is different, as it’s a sketch of my early thoughts on a tough issue. I hope both these approaches stoke conversation, but certainly, for my own selfish sake, the latter. As I engage issues of rights, duties, and the common good here, I’m over deep waters with which others are more familiar. I can’t possibly do it all justice, so I want to frame the questions through the lens I’ve been using in Notes. I hope others can help me see what I’ve missed or misunderstood.
Why take care of sick people? It didn’t have to be this way. Consider the words of Karl Brandt, director of the Nazi Aktion T4 euthanasia initiative:
“We German physicians look upon the state as an individual to whom we owe prime obedience, and we therefore do not hesitate to destroy an aggregate of, for instance, a trillion cells in the form of a number of individual human beings if we believe they are harmful to the total organism—the state.”
This wasn’t outlandish at the time. Germany led the way but eugenics had captured the hearts and minds of those in the United States and other countries. Figuring out ways to improve the health of the human population as a whole was in vogue. With a collectivist mindset and without robust protections for individuals, Brandt’s logic made sense. Sick people cost time, money, and effort. Those resources could better spent elsewhere.
Thankfully, the project failed. The Nazis weren’t successful and formal eugenics fell out of favor.1 From the ashes of World War II and other bioethical disasters in the twentieth century rose the Nuremberg Code, Declaration of Geneva, the Helsinki Declaration, the Belmont Report, the Bill of Human Rights - indeed, the whole field of bioethics has been a reaction to abuses of biomedical power. As a result, the individual became inviolable.
That’s helped, but it hasn’t fixed everything. Speaking from the domain of my own expertise in palliative care, there remain significant disparities in how we care for people with pain. Despite the declarations, reports, and codes, equity in healthcare remains elusive. The reasons for this are legion but seem to relate to competing interests within the healthcare system: not everyone wants to pursue health. Instead, they’re interested in making money, in using healthcare as a carrot or a stick to influence behavior, to advance one’s career, or to advance science. Sometimes it’s less intentional: inertia carries clinicians and health systems away down rivers of burnout or bureaucracy. Sometimes we’re looking for solutions to problems caused by earlier solutions and we lose the forest for the trees. The end result is all the same, though: people get hurt.
So, we intuit that something is owed to those who trust others with their bodies. We call this a “right.” Does that mean we have a right to some ideal state of health, a right to basic healthcare, or a right to all the actual healthcare we could want? What grounds that right and gives it force? Who bears the duty to fulfill the right? Is it a right to simply not be harmed when trusting another with one’s body, or is it a positive right to receive those things that are beneficial?
In short, if justice is giving to someone what is owed them, then why do we owe people any healthcare? What about a sick person (or a potentially sick person - i.e., anyone at all) places a claim on society broadly and clinicians narrowly? These aren’t facetious questions; they’re questions that if unanswered, allow the inviolability of the individual to succumb to the hidden curriculum of medicine that fosters technical efficiency over good care. Such technical efficiency ironically overwhelms the individual by dissolving them into mere biology, a substance that is far easier to act upon than a person.
A Right to What?
I’ve previously suggested that medicine has three goals of care: longevity, function, and comfort. These don’t exhaust what health is nor do they capture all the many goals someone might have for life, but they are the three ways medicine intervenes on the human body to support and restore health. There are two other, more controversial goals: enhancement (i.e., transhumanism) and death. These latter two goals transform (indeed, deform) what has traditionally been offered as healthcare. They do, however, show where we might understand the content and limits of a right to healthcare because they highlight where health and individual choice may diverge.
When we speak of a right to healthcare, does it mean a right to those resources that foster health - perhaps the most straightforward understanding of the word “healthcare?” Or does it mean a right to the resources that allow me to do what I want with my body? If we have no shared understanding of what health is, then we fall back on the principle of respecting autonomy to settle differences in evaluation: “I wouldn’t decide this for myself, but I wouldn’t keep someone else from choosing it…” This is the rationale employed in favor of practices about which people might disagree, like assisted suicide and euthanasia (ASE), use of life-sustaining therapies, and decisions about other medical interventions, like cosmetic surgery.
This doesn’t seem so bad at first glance: people just get what they want. But it’s not so straightforward. Consider these contrasts:
What are the limits of healthcare? If healthcare is used to pursue health, then there are limits on what can be reasonably offered. We can debate what those limits are, but we would rely on a shared understanding of what health is to define the scope of practice. It also helps us to appreciate how health relates to other goods like justice, environmental stewardship, family, and so on. If healthcare is used to pursue what one wants to do with their own body, then there are no a priori limits on what can be reasonably offered. This freedom doesn’t just exist at the level of preference about specific interventions, but in discerning how one might use their body to achieve other goods. Health is, in this estimation, whatever I want to do that doesn’t hurt someone else. Without limits or a shared understanding of health, we would fail to see and study the relationships health has with other goods, which might explain some of the furor around pandemic policy. Deficiencies in those relationship could also result in disordered uses of healthcare for other purposes, and other tools to address health needs (e.g., ED visits for homelessness, incarceration in lieu of mental health treatment).
What is the formative impact of the practice of healthcare? The practice of healthcare in pursuit of health will be a formatively different experience for clinicians than the practice of healthcare to meet a desire. As Alasdair MacIntyre saw it, virtues are those qualities that allow one to pursue and achieve the ends toward which a particular practice is aimed.2 What are those virtues that are required when one pursues health compared with those that are required in pursuit of actualizing someone’s desires? Traditionally, healthcare has required clinicians to be compassionate, wise, curious, honest, and steadfast, among other things. How would this change when healthcare aims not at health but at realizing desire? I can’t go into detail here, but only note my suspicion that these practices of medicine would look different and form clinicians differently.
How does healthcare help us live life as a whole? The practice of healthcare in pursuit of health engages all of society in trying to better understand what it means to live well in our frail, vulnerable, and mortal bodies. On the other hand, the practice of healthcare in pursuit of desired services leaves that question unaddressed. Instead, healthcare becomes a consumer-driven, transactional service. Clinicians and patients don’t find solidarity in pursuit of health, but rather are aligned in a customer-provider relationship. Social institutions in the latter case exist only to ensure the efficient, equitable transfer of those services. Given healthcare’s technical power, this means the institution would twist and grow in all sorts of unpredictable ways as it sought to address first these desires and then those. The institution itself would be difficult to sustain as it became all things to all people.
What duty does a right to healthcare summon? A right presupposes a companion duty. Just as we might wonder where the boundaries of a right are, so, too, we can consider the boundaries of a duty. If the practice of healthcare is the pursuit of health, then clinicians (and others, probably) have a duty to help the right-bearer pursue health.3 That is limited by some other considerations, like resource availability (including the clinicians’ own time and capacity) as well as weighing health against other goods. Generally, though, their duty ends with health. If the practice of healthcare is instead the satisfaction of desire, then clinicians would be duty-bound to serve the will of the patient without consideration about the end toward which their technical expertise would aim (except for technical considerations about whether that expertise will accomplish what the patient desires). Except for the issue of resource availability, this duty could be limitless: clinicians must be prepared to acquiesce to any request. In the words of Stephen Jenkinson, then, “if you can, you should.” This creates a far more expansive duty for clinicians that disregards the clinician’s own conscience and flattens the moral landscape of medicine.
These contrasts bring us to a tension the pandemic has dragged from the shadows of our ethical intuitions: that tension between individual choice and the common good.
Daniel Callahan, way back in 1994, wrote:
“As a field bioethics has displayed two serious deficiencies, exactly the kind that usually afflict golden children: it has failed to pursue with sufficient imagination the idea of the common good, or public interest, on the one hand, and that of personal responsibility, or the moral uses of individual choice, on the other. […] bioethics needs to develop the capacity to help individuals make good moral decisions in their own lives and to do so in the context of that most basic of all moral questions: how ought I to live my life?”
Why should bioethics consider the good life at all? Well, it’s going to say things about life no matter what. Bioethics has too narrowly focused on individual choices and therefore neglected important cultural developments in society and in medicine:
“If we think of medical developments as simply putting difficult but discrete moral choices before us […] we have already failed to see the presence of a still deeper question. That is really a twofold question: first, to what extent has the culture engendered by medicine already constrained our choice (forcing us, for instance, to consider the use of a respiratory whether we want such a choice or not)? And, second, what kind of a culture will we be engendering by the pattern of private decisions that eventually emerges from the need to make decisions?
[…]
We must decide, then, not just what to do about the choices but, at the same time (and this is a separate and separable question), in what kind of culture we want to live, knowing that public cultures are created as much by the sum total of the private choices people make as by the public laws and institutions they create.”
This isn’t just an issue for those with or without insurance, with or without healthcare access, with or without first world amenities. This matters for everyone: “If there is no common picture of what biomedicine can do to foster a good human life - if the very question of what constitutes such a life has been banished in the name of pluralism - then that life will be pushed about in ways it is helpless to control, a frail ship that has lost its direction on a stormy, confused sea.” It’s been almost thirty years since Callahan wrote this, but this tension between the individual and the community is something faced by societies throughout history. Perhaps the issue seems so much more acute now because our power is so much greater. Meanwhile, the tension has wound tighter and tighter.
It feels like the pandemic has now cut the tension loose in a violent explosion. We as a society have lacked the shared vision of the common good necessary to right the ship and sail through the storm. And so it is in so many other ways: assisted suicide and euthanasia, futile treatments at the end of life, antibiotics for viral infections, ivermectin for COVID, masking, abortion and other reproductive technologies, expedient diagnoses, human enhancement - the list goes on. Each has their own unique history and context, each side forming around a confluence of rational argument and emotional intuition, but they all mark battlefields where people struggle to make sense of what healthcare is for, what health is for, or even what health is.
In the throes of such confusion and distrust, we fall back on claiming rights. If we have a right to something, then we have a claim on others and a legal recourse when that right is violated. But as valuable as rights are, focusing solely on rights risks making the mistake about which Callahan warned: favoring individual considerations over the common good. It also draws us into an immediately litigious relationship. Although a child has a right to be cared for by their parents, their primary claim is one of love. They trust their parents will love them, and they need not exert their right. If they’re in a position of making a right-claim against their parents, that says something tragic about the quality of the relationship. So it is with the state of healthcare. There are other, better ways of interacting with one another, if we can reach for them. Rights only secure the floor of civil life.
This isn’t a generic individualism versus collectivism, which was so egregiously skewed toward the collective in Nazi Germany. This is, instead, a task of discerning whether the landscape of our common interests supports our shared and common flourishing. Shared because I, as an individual, will flourish in ways similar (although likely not identical) to you. Common because a community can flourish in ways that only communities can. There are hard questions, like those found in a pandemic, where we must weigh individual rights against public health. But before we do that, how can we at least set the frame to begin discussing these things in less acute, but no less important, ways?
Healthcare as a Common Good
One of the challenges of parenting is inculcating an appreciation in one’s children that caring for things and spaces that aren’t theirs, but belong to the whole family, benefits everyone - including themselves! Clean dishes, for example, are a common good in the family. An extra slice of cake, as much as a kid wants it, is not a common good.
John Tasioulas and Effy Vayena explain common goods in the following way:
“…something qualifies as a common good if it serves the interests of all in a given community (universality), serves those interests in a uniform way for each person (uniformity), and does so in a non-rivalrous manner, i.e., the serving of anyone’s interests is not at the expense of serving any other’s…”
Healthcare is a common good, in this reckoning. It’s in everyone’s interest to have their health needs addressed. Not only that, but it’s in my interests to have your health needs addressed: the community is better off when each person is healthier. Healthcare should (in theory, anyway) address those needs not necessarily in a uniform way, but certainly in an equitable way. And healthcare is not a zero-sum game (except in resource limited settings, where the common goods shift amidst crisis).
It makes less sense that healthcare would be a common good if it existed only for the satisfaction of desire. Think of getting a haircut or a tattoo, both of which involve acting upon someone else’s body but can’t be construed as a common good. Healthcare as a common good only seems to make sense if health as its aim: well-working wholeness and a subjective experience of empowered agency. Although it’s a universally shared interest to chart one’s life and do what they want their body, this is too broad to inform healthcare. It means healthcare could be used for anything, because any human experience is mediated through the body and requires health to some degree.
Already, though, you might see a difference in the way Callahan discussed “the” common good, and the way Tasioulas and Vayena understand healthcare as “a” common good. Callahan seems to mean something like the quality of the culture in which we live: its traditions, its institutions, and its relationship with human flourishing. I don’t know enough political philosophy to parse the finer distinctions here, but it seems that both perspectives have something worthwhile for how we understand justice in healthcare.
Callahan seems to have in view how we shepherd our understanding of health and healthcare as a community. In this, Callahan aligns with MacIntyre’s understanding of a practice. The virtues are those qualities required for a practice to achieve the good at which it aims. Community and tradition are required to sustain those virtues, and this seems to be the “common good” which Callahan had in mind. Without intentional cultivation of such a community, virtues will drift elsewhere or fade from a practice entirely, and the practice will fail to achieve its good end. Married couples have a sense of this: it’s not enough to seek your own good, or even the other person’s individual good. You need to also consider the good of the marriage itself. An intimate relationship almost becomes the third “person” which warrants special attention and care, different from each individual and having its own life-sustaining processes.
Is this cultivation of the common good merely a democratic process that is the result of whatever the collective wants, or are there some objective anchors that prevent the majority from forcing the practice in a direction that might be ill-suited for the good which it was intended to achieve? If the latter, and one such anchor is health, then an insidious injustice would be the degradation of a community and tradition of practice that supports health. Such degradation makes it harder for people to access healthcare for their health and thus to receive what is owed to them. Healthcare is owed to them because healthcare is a common good, shared among people of equal dignity and moral standing.
One serious problem in discarding health as an anchor and fully democratizing healthcare is that it allows the majority to modify the relationship we have with our own bodies in ways that may not benefit everyone. One example is David Velleman’s argument that more choices may not always be better for someone. Nevertheless, if health exists as an anchor recognized ast one good among many in life, then much about our approach to healthcare can be democratized - e.g., how should we handle visitation in nursing homes during a pandemic?
What about the tension between common goods and individual rights and choices? Tasioulas and Vayena don’t see a conflict, explaining that there are two ways to think about justice. In one way, “justice concerns moral duties that are owed to and claimable by others as a matter of individual rights.” This is probably the form of justice with which most Americans are familiar. In a different way, “justice concerns moral duties governing our conduct towards others, especially insofar as they fall within the proper remit of public decision-making.” Rights and duties are, of course, two sides of the same coin. Justice, though, pertains just as much to what’s good for us as what’s good for me. So, this second sense of justice “includes duties to promote common goods.” In this way, we, as individual citizens as well as a society, have a duty to both contribute to a common good that is healthcare as well as the common good which is the tradition and community of practice that sustains those virtues that permit us to support and restore health. This is in addition to the rights-claim that any individual has against others which is grounded in their human dignity and is the basis of human rights.
Trajectories
Following a meandering reading-path, sharing some brief commentary along the way.
“Should we get rid of the scientific paper?”
A lot’s changed in science, but not much in scientific publishing. Unless you count the ways in which publishers have sought to improve profitability - e.g., fees for open access journals. Once upon a time, journals weren’t just the primary medium scientific communities shared their discoveries, they were the only medium. But we have the Einternet now. There are drawbacks to pre-prints, but the aim of scientific publishing should be to improve access to knowledge, not paywall it. How can we better disseminate and democratize knowledge in this way?
“The right to a dead baby? Abortion, ableism, and the question of autonomy”
Charles Camosy is a Catholic theologian and bioethicist writing about one of the most controversial bioethical issues of our day. However, he doesn’t rely on Catholic theology to make his argument; rather, he describes worrisome trends of ableism informing not only parental decisions to pursue abortion, but clinicians to recommend it. He describes some cases where clinicians even badgered mothers repeatedly about the importance of getting an abortion. He doesn’t downplay the importance of perinatal palliative care, but encourages us to be careful about the reason why we choose for or against certain medical interventions: do we intend death? Unfortunately, I worry this issue (like so many others) is so polarized that we can’t have a nuanced discussion about it. But before any discussion or ethical analysis, can we at least come together in common lament in the face of wicked problems such as these? In the face of the power of those problems, we’re tempted to use medicine not merely to pursue health, but to remediate all kinds of problems. We want, as Gerald McKenny has argued, to relieve ourselves of our human condition. In so doing, “…the very technology that originates in the effort of the modern subject to bring the external world under his power ends with the power of technology to recoil back and destroy or radically refashion the very subject whose power it is.”
“Therapy beyond good and evil”
Modern psychotherapy has grown into a morally relativistic enterprise, at least as it pertains judgment of the right kind of life for its clients. The practice itself is governed by stringent ethical guidelines that are by now means relativistic. James Mumford, an ethicist with bipolar II disorder, picks up on this inconsistency. I think this relativism is only problematic insofar as we turn to psychotherapy to solve those problems that only moral formation can rightly address. The question is, can any form of psychotherapy avoid being morally formative? If not, is that a problem?
Closing Thoughts
“A neutral position is not truly possible on the legal question about whether assisted suicide should be permitted. To take a position that says that doctors can perform it if they want while others may choose to abstain is to take a position in favor of permitting the practice. It is analogous to a position that says that some people can choose to steal if they want, while others who find it objectionable need not steal. Translated, this means stealing is permissible.”
Aaron Khieraty, “First, Take No Stand”
The promises made by eugenics still shine today, though. Human enhancement in one form or another is too enticing to fall after just one war and a handful of declarations, codes, and laws. This also seeps through in language about “lives worth living.”
MacIntyre calls these “internal goods.” An internal good in medicine would be health, for example, or could be the actualization of a patient’s desires about their body. An external good would be the money made by the clinician. Engaging in a practice merely for its external goods does not require nor will it cultivate the virtues necessary to achieve its internal goods. So, you could imagine an unscrupulous clinician who only engages their practice for money: they’ll lack critical virtues to foster health, like compassion. If you misidentify an internal good, virtues will likely look different too.
Establishing a positive right to healthcare is beyond my scope here. One could argue, instead, that people have a negative right to healthcare. Therefore, no one should obstruct their access to healthcare, but no one is obligated to provide those services either by virtue of a right. They may, however, be obligated to provide services by way of contractual obligation (“You agreed to do this surgery”) or equity (“You’re offering this surgery, therefore it must be offered equitably”).