Notes in the Margin - 25 April 2025
Notes from a Family Meeting is a newsletter where I hope to join the curious conversations that hang about the intersections of health and the human condition. Poems and medical journals alike will join us in our explorations. If you want to come along with me, subscribe and every new edition of the newsletter goes directly to your inbox.
Every so often, I’ll share things I’ve been reading with a few words of mine scribbled in the margins. If you have something to share, please do! The comment section is open.
Assuring the Provision of Palliative Care as an Ethical Duty for All Clinicians
The American Medical Association (AMA) recently adopted a policy and amended the Code of Ethics to affirm that all clinicians should provide palliative care in serious medical illness. I assume that means either primary palliative care (that clinician does it) or specialty palliative care (they refer the patient to see a clinician with expertise in palliative care). Although specialty palliative care has steadily grown as a field since its inception, the provision of so-called primary palliative care seems to be spotty. People will extol the virtues of palliative care while bemoaning that they have little time to do it themselves, as if the basics of palliative care were something more than the practice of good medicine (assuaging symptoms, providing goal-concordant care).
Why Good Palliative Care Clinicians Get Fired
Abby Rosenberg, Elliot Rabinowitz, and Bob Arnold reflect on what it’s like when a patient, family, or primary team “fires” you from the patient’s care. “Our job in palliative care is not necessarily to be liked. Our job is to advance the conversation and corresponding care, which is inherently difficult and requires courage; it almost always risks a short-term cost. The long-term gain, however, is that patients and families not only hear the information necessary to make informed decisions and receive goal-concordant care but also tend ultimately to trust and appreciate the clinicians who introduced the scary concepts in the first place.” Coupling this commentary with the AMA’s new policy, though, might suggest another challenging role for palliative care clinicians: they may function as a kind of institutional prophet, reminding an institution that it exists to serve patients, not dialysis machines, transplanted organs, cancer, or any other individual organ or disease. This probably (hopefully) won’t get someone literally fired from their job, but it can lead to some uncomfortable conversations beyond the bedside. There’s a tactful line between graciousness and boldness that I’m still learning how to walk.
In Defence of Fictional Examples
Alex Fisher argues there’s value in using examples from literary fiction to inform thought experiments in philosophy. Well-written stories allow us access to someone’s internal state in ways that real life cases don’t. It is true that fictional cases might be constructed to mislead, or they simply might not be comprehensive enough to help us refine our thinking. However, I agree with Fisher overall. For medicine, I think fictional cases offer several benefits: preserving the sensitive details of real patients’ lives, and allowing the engagement with the case to be playful. While we may hesitate to approach a real person’s case in a spirit of play, knowing a case is fictional could promote playfulness which would improve learning, reflection, and adaptation. We would feel freer to modify details of the case on the fly to investigate certain intuitions (e.g., “What if the patient were a man instead of a woman? What if they were black instead of white? Let’s replay the case but they opt against the surgery.”). On the concern that a case might be insufficiently written or misleading, well, real life cases can be so written too, but with a fictional case, we may be more inclined not to accept it at face value. A valuable discussion might ensue in which we discern what details are really necessary to doing the work the case requires.
Intrusion in the Practice of Medicine
Current developments in the state of health care and science in the United States are alarming. However, pieces like this one appear tone-deaf to the populist backlash against progressive elitism that has garnered so much distrust. Self-regulation is not an automatic right. It requires trust, and our licenses to practice medicine are granted to us by the state. Having worked as a psychiatrist, a field with more overlap than others with the law, I recognize the practice of medicine is sensitive to the hopes, expectations, and mores of our society. The responsible practice of politics is a negotiation between the profession and society, with the profession responding to society’s hopes within the limits of its practice and society appropriately deferring to expertise. But it all requires trust. While I believe some politicians are acting in total bad faith, they represent large constituencies who simply do not trust the high-falutin’ experts at the CDC, HHS, and even the clinicians in their own local clinics and hospitals. I interact with people like this every day. The restoration of trust is going to require a lot more than “advocacy.”
‘I’ve had 100 operations and will never stop’ - Inside China’s Cosmetic Surgery Boom
A look at the other end of the spectrum, when medicine becomes a mere tool in the hands of society to fulfill its every wish. No good results from this either.
‘You can let go now’ - Inside the Hospital Where Staff Treat Fear of Death as Well as Physical Pain
A poignant portrait of several people nearing the end of their lives in Denmark. Here we see portraits of compassionate clinicians who help these people live the best lives they can even as they die without anyone proposing that they end of their lives, or their lives aren’t worth living.
From the Archives
Here's something, only a little dusty, that new readers may not have seen.
Why do we take care of sick people? 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.
Just Healthcare
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 wa…
