By Fr. Patrick Norris, O.P.
In my ministry as a hospital chaplain/ethicist, one of the most difficult ethical decisions people encounter is end-of-life care. “Should I try one more chemotherapy treatment that has a small chance to cure but also might shorten my life?” “Am I killing my loved one if I choose not to put in a feeding tube?” Or sometimes it’s the clinicians who are frustrated with families and their requests for seemingly “futile care” for their loved ones.
Today, these end-of-life decisions are made more difficult by the realities of our death-denying culture, the proliferation of medical treatments and their costs, legal concerns that sometimes inhibit sound ethical care, and the breakdown of family structures that might result in heightened emotions and less certainty about patient preference. The following are 10 ethical considerations that I regularly keep in mind to help clinicians, patients, and loved ones.
1) Ethical Norms for End-of-Life Care: They are actually relatively straightforward. Generally, we have a duty to try to preserve life as stewards of that gift from God. However, if a life-sustaining treatment (e.g., antibiotics, ventilator, blood transfusion) is ineffective, or disproportionately burdensome compared to its benefits, individuals are not morally obliged to take it. When a patient subsequently dies, the moral cause of death is the underlying condition or illness, which a patient no longer had a duty to circumvent. This approach allows us to find a middle ground between euthanasia and preserving life at all costs (vitalism). Chaplains can help people consider not just the physical impact of the treatment, but the psychological, emotional, social, intellectual, financial, spiritual, and religious effects. I often encounter patients who simply have lived a good life and are ready “to go home to God.” Chaplains can affirm people in the decision to admit our mortality, recognizing that sometimes further treatment is prolonging death rather than preserving life. Helping patients or loved ones see this ethical framework can alleviate the false sense of guilt about violating the will of God in allowing natural death.
2) Withdrawing vs. Withholding: In particular, I have found loved ones struggle more with withdrawing life-sustaining care than withholding it. Chaplains can explain how there is no ethical distinction between the two — the same aforementioned norms apply in either case. Sometimes people might feel in removing treatment that they are somehow causing the death of the loved one: “If I didn’t remove the ventilator, my loved one would continue to live.” However, in accord with the ethical principle of double effect, we always must distinguish between physical causality and moral culpability, which has more to do with intentionality or motive.
3) Applying Norms in the Concrete: This is the challenging part. It is a well-known ethical maxim that as we move from principles to norms to concrete decisions, our ethical certitude decreases. Everyone can agree to do good and to avoid evil. However, what decision should be made in the ICU with this patient and in this set of circumstances is often less clear. Decisions are made even murkier when the medical data is insufficient. In the midst of uncertainty, decision-makers can become paralyzed, concerned about going against God’s will. I remind people that God can only expect us to make the best decision possible with the data we have (what ethicists call moral certitude). If God wants something more (metaphysical certitude), then I tell people God must send us a text or email. God cannot demand the impossible. We cannot demand the impossible of ourselves or others.
4) Clinician Disagreement: This can be a particular problem if there is significant turnover in specialists during the course of a patient’s stay. Primary care providers who often know the patient well are rarely involved in hospital care. In addition, clinicians and patients process information differently. Patients or loved ones often assume they will be in the 10 percent who do well, while clinicians might assume the patient will be in the 90 percent who do not. Patients/loved ones might be reluctant to confront the clinician. But they might confide their frustration and confusion to the chaplain. Chaplains sometimes can empower them to raise this issue with the clinicians or suggest a family conference to help get everyone on the same page.
5) Patient Wishes: Loved ones ideally are supposed to make decisions based on the desires and values of the patient (substituted judgment standard). Unfortunately, at times, loved ones do not know what the patient would have wanted because they never talked about it (“Who wants to discuss end-of-life care at Christmas dinner?”) or the situation is unanticipated (“We never talked about being paralyzed from Guillain-Barre syndrome!”). And even when there have been discussions, many studies show that loved ones and clinicians are still inadequate at anticipating what patients would want. We try to combine a sense of a patient’s expressed wishes and values and a more objective best-interests approach, taking counsel from as many people as possible to rule out any biases.
6) Advance Directives: One way chaplains can reduce this ethical uncertainty is to promote the use of advance directives, not just as a legal document (appointing an agent right before a surgery), but an ethical document by encouraging discussion with loved ones and their clinicians. As a person’s illness advances, they can go through a series of first steps, then next steps, and then final steps conversations.
7) Patience in the Real World: As chaplains, we can remind clinicians, patients, and loved ones how difficult these decisions are. Sometimes clinicians who deal with death and dying every day forget that this is the first time this wife has faced the potential death of her husband. Consequently, with all parties involved, encouraging patience is important. Sometimes in the midst of an ethical impasse with a family, when clinicians and the ethics committee feel that life-sustaining treatment is futile, the solution might lie in not stopping all treatment, but at least not escalating it while loved ones come to grips with reality. We all strive for perfect solutions, but as theologians have reminded us, sometimes the perfect can be the enemy of the good. In getting from point A to point D, some people need to move through the more imperfect points of B and C until they have the courage to make the optimal decision.
8) Dysfunctionality: That being said, chaplains can play an important role in facilitating sound end-of-life decisions in the midst of dysfunction. Be aware of guilt (“I’ve not been around enough and so I show my love by asking that everything be done for Mom”) or a poor understanding of an individual’s statement such as “I want everything done to save my life.” Often people don’t realize what “everything” means these days, given high-tech medicine. Also, be aware of bad reasons for forgoing treatment, such as untreated depression, a mistaken interpretation of medical information, or a vague directive (e.g., a patient who didn’t ever want to be on a ventilator but in fact would have accepted a short-term trial).
9) Addressing Fears: Often, this is where the spiritual and the ethical intersect. For instance, a request for inappropriate treatment could be rooted in a particular fear of dying that has never been addressed. Chaplains can enter into that emotional/spiritual world of patients to address those fears and concerns. Chaplains can also enter this space when patients seem to be refusing treatment prematurely or (in some states) might be requesting aid in dying. In the context of finding hope in the midst of suffering, chaplains have a duty to try to explore the patient’s concerns about losing control, feeling abandoned, being a burden to loved ones, losing function, and experiencing unrelieved pain. Collaboration with the palliative care team (including a designated palliative care chaplain) is crucial when multiple areas of suffering are present to make a sound ethical decision.
10) Exploring Miracles and Hope: I could devote an entire article to the hope of a miracle, but chaplains can be invaluable in exploring loved ones’ or a patient’s understanding of miracles, their theological perspective of the intersection of the natural and supernatural, their previous experience with the seemingly miraculous, etc. Through their listening presence, chaplains can discern the belief that is driving the behavior that might be impeding sound ethical care. A priest friend always tells people: “Keep hope alive.” As chaplains, we can do that by helping loved ones and patients discover where hope can be found beyond the miraculous in their worldview. That is, as what we hope for changes from cure to life-extension to comfort, can we help people discover whom or what they can put their hope in?
Human beings long to have control and certainty, but healthcare contains great ambiguity —not only medical but ethical. For chaplains, being aware of those ethical ambiguities and how to mitigate them can help us to work with clinicians, patients, and loved ones — not only to embrace mystery at the end of life but find good (not always perfect) solutions to the ethical questions of modern healthcare.
Fr. Patrick Norris, O.P., is a chaplain and ethicist at SSM Health-St. Mary’s Hospital, Madison, WI. He previously served as a pastor as well as the Associate Director of the Center for Health Care Ethics at St. Louis University Health Sciences Center.