More ECMO?
Dilemmas Wrought by Life-sustaining Therapies
The American Journal of Bioethics dedicated an issue to discussing the arguments for and against withdrawing a special form of life-sustaining therapy (extracorporeal membrane oxygenation, ECMO) from a patient who is awake, has the decision-making capacity to disagree, but has no hope of ever living without the therapy.1 The target article by Andrew Childress and colleagues surveys five arguments that might support such a course of action, and then various peer commentaries address that paper and related issues.
You may be wondering: why in the world would you do this to someone? It sounds an awful lot like murder! Nevertheless, conflicts over life-sustaining therapies like ECMO, ventilators, dialysis, or cardiopulmonary resuscitation (CPR) are common. It’s not always clear how to proceed through a conflict and to discern where rights and responsibilities change or end. The authors of the target article attempt to clothe with words a moral intuition many clinicians have in caring for people for whom therapies are either working in some minimal sense (but total recovery remains impossible), or working but with substantial collateral harm. The intervention no longer feels helpful, but what happens if a patient or surrogate decision-maker disagrees? Well, none of the arguments convince the authors, and so they conclude that it wouldn’t be ethical to withdraw ECMO over a patient’s objection. They end the paper with a call for ethicists to redouble their efforts: surely the right argument is out there to justify this course of action.
This issue of AJOB illuminates some of the landscape of life-sustaining therapies so we can better frame our disagreements, commitments, and questions. Nevertheless, these conflicts will remain intractable because, at least in part, deeper issues remain unaddressed. I can think of two areas they remain unexplored by the target article and its peer commentaries.
The Relationship
One of the arguments that Childress and colleagues dispatch in their paper is a rights-based argument: to what does the patient in the case have a right? Does he have a right to ECMO? It’s an important question, but I want to push beyond mere rights. After all, children have a right to be cared for by their parents, but it’s a pretty tragic circumstance if a child must appeal to their rights to receive what is needed from their parents. Rights set the floor, but surely we can hope for better from our clinical encounters.
One way to discern these aspirations is to ask, whose technology is it anyway? If my physician prescribes me an antibiotic and I stow it in my medicine cabinet, I can properly say that’s my medication. The physician cannot come into my home and take it from me. Even still, what was that transaction? The physician didn’t sell it to me. It wasn’t a gift or charity. Nevertheless, that item says something about our relationship. Surely, as the rights-based discussion acknowledges, the antibiotic can represent what I’m owed by my physician. But it can also represent how much my physician cares for me, which aspires for something beyond rights. It strives toward compassion.
Nearly all therapies deployed in the hospital, however, and particularly life-sustaining therapies, have a blurry state of ownership. Owing in part to their pseudo-agency (more on that in a moment), it’s hard to say that who owns them - though many people are responsible for them (clinicians) and dependent on them (patients). Because the patient depends on them you might make an argument that they have a right to them, but that doesn’t mean they own them. Even if they do, by what mechanism do they come into ownership? The patient rarely purchases the therapy themselves. Are these gifts? Is this charity? Did the patient somehow earn it?
These concepts set unexplored frames for how we understand what’s going on in the relationship and what we expect from clinicians and patients (and other relevant stakeholders, e.g., payors, administration). It’s important to determine what we do with this or that medical technology; it’s also important to determine what we do with “us,” that is, the clinician and patient. How does this technology bring us together? What are we doing together, regardless of whatever technology we’re using?
Recognizing the pseudo-agency of the technology itself helps us to see that there’s a third major party in this relationship and it’s not the payor. It’s the ECMO.
Medical technologies like ECMO are pharmakons.2 Technology operates in ways we can’t predict from its invention nor from our intention. Consider Frankenstein’s creature who said, “Remember that I have power; you believe yourself miserable, but I can make you so wretched that the light of day will be hateful to you. You are my creator, but I am your master;--obey!” The pharmakon of ECMO might have unanticipated physiologic drawbacks. It can also have unanticipated social, emotional, and existential impacts. We rigorously study the physiologic impact of a therapy before it comes to market; we never study the ethical and existential impact, and are left to play catch up to our innovations. The fact that we’re having a debate about ECMO that we could have had about ventilators decades ago shows how little our wisdom has advanced.
The conflict during these occasions also demonstrates profound role confusion for patients and clinicians alike. Pre-organ transplant, like in the case of the patient who wants to use ECMO indefinitely even if the clinicians don’t think it’s wise to do so, patients may want to occupy the sick role whereas clinicians believe they should occupy the dying role. Ironically, post-transplant, the perspectives can be reversed: patients might desperately want to stop longevity-focused care while clinicians don’t allow it.3
But what script for dying does 21st century American medicine offer? As I explored before, not much. Dying is a highly medicalized, technological affair for many people. Whether that’s desirable or undesirable, good or bad, is worth discussing, as how we die often testifies to how we’ve lived and the values we want to affirm. Such discussions lead us to Big Questions about the good life and the common good that a well-functioning pluralistic society may be able to engage. That discussion seems peripheral to the more technical discussion laid out in this issue of AJOB, but it’s the lack of that very discussion that contributes to talking past one another in the details of the concrete ethical controversy at the bedside. We rely on different presuppositions (some of which we ourselves have left unexamined, and probably haven’t brought into dialogue with the presuppositions of others). A bedside discussion in a crisis usually isn’t the ideal time to engage that kind of discussion, but then again, neither is it a time to discuss withdrawing ECMO over someone’s objection. What a dilemma.
The Aim of Medicine
The other foundational tension that prevents these arguments from purchasing much ground is that there is no clarity about what we’re deploying all the medical technology for. For decades, in most areas of medicine, the growing ethos has been, “You choose for yourself, and you can choose whatever you want.” Now, that’s heavily qualified in American healthcare for economic reasons, but from the standpoint of bedside ethics when we put money aside (because most clinicians are idealistic), patients are left to determine for what purposes they’re going to use medical interventions.
Clinicians, as they’ve become more sub-specialized, have their own purposes: they move surrogate markers toward improvement or resolution. The creatinine goes down, the opacity on the scan shrinks, the ejection fraction goes up. Bereft of a common language of health to share with their patients, they retreat into a world where their interventions appear less value-laden. I’ve written before about how I believe the telos of medicine is health, and how easily that telos is supplanted by other priorities (even and especially when we think we’re “respecting autonomy”).
You might call these kinds of clinicians technicians because they often have the function of their organ or disease of interest in view, rather than the health of the patient as a whole. For clinicians who don’t appreciate having their professional identity desiccated to that of a technician, we nevertheless slide into that role by declaring “futility” when our interventions fail to achieve some technical outcome - as in the case of a patient being permanently sustained on ECMO in the ICU. We can envision no greater purpose for our work than to satisfy the technical outcomes we see fit. Some may seek solace in at least satisfying the expressed preferences of the patient - just give them what they want, customer’s always right. But the moral distress this cultivates at the extremes, like in this case of ECMO, suggests something is going awry.
Therein lies a tension because if benefit and harm are defined wholly by patients, and if their risk tolerance alone determines the course of action, then not only do we instrumentalize (i.e., dehumanize) the entire profession of medicine, but patients lose expert guidance through the wilderness of their illness and medical technology. This guidance isn’t only the guidance of technical knowledge, but of wisdom in helping them to situate an intervention within the greater context of their health and, maybe, situate health in the greater context of their life. “Benefit” and “harm” must have definitions shared by all involved.
Another facet of this challenge is found in technopolies. The dilemma posed by the ECMO case provides us with information. This is information about the relationship between clinician and patient, about the human condition, about emotions - all sorts of things. All this is messy and fraught with conflict (not necessarily a bad thing). We may be tempted to try to engineer a rational lever to make processes go our way (the arguments surveyed in the target paper). We may also hope that in twenty years time, the technology will be so advanced we won’t have to worry about this problem anymore. Of course by then a new technology will revisit the same problem upon us, but never mind that for now. Both of these technical maneuvers exacerbate the problem and call for further technical interventions, which continues the spiral. What is needed is to face the relational and teleological challenges head on, but a technopoly has no stomach for that.
Talking Past Each Other
I worry debates about these issues will proceed unabated and unresolved because they engage at a technical level while leaving deeper issues about the therapeutic relationship and the aims of medicine unaddressed. Nevertheless, these arguments aren’t useless. They do help to provide language to clinicians who are morally distressed with a situation or have an inchoate concern about the direction a medical intervention is taking clinician and patient alike. The likelihood that a frontline clinician is going to read the American Journal of Bioethics is, sadly, low, but I plan to share the article by Childress and colleagues with those who are struggling to articulate their perspective on withdrawing or withholding life-sustaining therapies.
I wouldn’t plan to stay there, though. Perhaps that could be a springboard into the more important conversation I’ve tried to lay out here.
While ECMO is in view in these papers, the considerations can relate to almost any life-sustaining therapy. ECMO is novel and expensive to provide, financially and in terms of personnel, and therefore a thorny ethical consideration.
Sorry if there’s some Greek plural I should be using instead.
The so-called “gift of life” philosophy may inform the clinicians belief that patients owe it to their donor to give it the best shot possible to survive post-transplant. As the initial post-transplant course can be rigorous, clinicians also believe that if they cheerlead demoralized patients through it, they’ll be grateful (and alive) in the end.