Wherein I read an article about hope in health care and feel compelled to comment on autonomy, the FDA, and a pastoral letter from Cardinal Bernardin.

Can Hope Ever Be a Form of Medicine?

A good piece on the tragic experience of A.L.S. from Daniela Lamas in the NYT:

And yet as doctors — particularly those of us working in places like the I.C.U. — we are trained to tread cautiously when it comes to hope. We applaud families for being “realistic,” which generally means that they do not ask for outcomes we consider to be impossible.

For patients with life-limiting disease, like that of the patient in the article diagnosed with A.L.S., the a new clinical drug trial unquestionably brings the hope of a cure to a “currently fatal” situation.

Reading about the clinical trial of NurOwn in Lamas’ article brought a few things to mind.

A.L.S. is the antithesis of freedom. It is a disease that slowly paralyzes the body, preventing people from walking, moving their limbs, and, eventually, their ability to breathe. In a world where we’ve become accustomed to doing and having almost anything we want, A.L.S. is a disease that slowly erodes autonomy.

In the American tradition, we greatly value autonomy. We honor those who “pull themselves up by their bootstraps” and glorify “rugged individualism.” Respect for a patient’s autonomy is a foundational principle of bioethics. This is ultimately a good thing! Indeed – it is appropriate for patients to decide, with the guidance and support of a physician, their own treatment decisions. But autonomy has a shadow side. Sometimes patients insist “everything” be done, even when available treatments cannot help achieve their goals of care. This rather common situation creates moral distress for stakeholders. Navigating patient preference in a world of finite resources is challenging. I know an accomplished hand surgeon who describes his job as primarily working to convince patients that they don’t need hand surgery. Managing expectations is hard.

The FDA plays an important role in the practice of medicine. The purpose of a clinical trial is to ensure a treatment is both safe and effective. Safety is important as health care professionals seek to “do no harm.“ That is, primum non nocere. The FDA also seeks to ensure that a trial demonstrates efficacy. There are consumer protection elements here. You can’t sell something that doesn’t accomplish what it says it will do. You might also say that this is about preventing false hope. NB: Failed trials are not a waste! They are valuable, as they can lead to successful ones in the future.

As a Catholic bioethicist, I cannot read this article without thinking of Joseph Bernardin’s landmark pastoral letter on health care: “A Sign of Hope”.

In this piece, the former Archbishop of Chicago presents hope as the distinguishing element of Christian health care.

Our distinctive vocation in Christian healthcare is not so much to heal better or more efficiently than anyone else; it is to bring comfort to people by giving them an experience that will strengthen their confidence in life. The ultimate goal of our care is to give to those who are ill, through our care, a reason to hope.

This hope is deeply rooted in the Christian faith tradition and a theology that promotes the promise of life. It is not simply a “hope for a cure.” Bernardin explains:

The hope of which I speak is an attitude about life and living in God’s loving care.

Hope means a lot of different things to people. It’s the thing with feathers, right? For me, this attitude about life is what brought me to serve in health care. And, I suppose, it is what keeps me there as well.