On call at the other campus a week ago, I bumped into a horrendously sad situation, a three-month old who was born in evident perfect health and who days before suddenly had a fever, vomiting, and a swelling head. This seems even worse than having a baby born ill, because you assume you will have this child for the rest of your life. This baby’s parents are very young, newly arrived from another country. I got back to the student office to chart my visit with them and said aloud to myself, “This really sucks. I don’t want these people’s baby to die.” I have never before called the on-call supervisor to debrief about a sad visit, and this was lately pointed out as if it’s a minor failing of some sort, so—the Enneagram One likes to check off all the items correctly—I went ahead and called the on-call supervisor, and I cried while I was telling her about this young family, and she cried with me.
We had an interesting presentation last week from a member of the ethics committee. Someone from that committee is available 24 hours a day, and can be contacted directly by patients or staff members. This fellow said that sometimes family members can fixate on, for instance, sodium levels, and not consider the big picture. One important ethics question is whether a treatment has become or would be “medically ineffective.” Because doctors rotate in and out of hospital units, a nurse is often the one to feel that a patient has suffered too much and to call ethics. Ethics, we have been told, is not about right and wrong, but about balancing competing values.
We learned that, if she feels pressured by the family, a doctor may do something she doesn’t want to do simply because it takes longer to say no than to say yes. One way to decline to provide a treatment is simply to say, “No. We’re not going to do that.” The physician can also offer alternatives based on, in order of preference: a POLST (this has the most authority; more on this below), the person’s DPOA (durable power of attorney), a previously filled out Advance Directive, or considering the “best interests” of the patient as expressed by someone close to him or her. This can be a neighbor, even if a relative exists, if the neighbor would know more about what the patient wants. Finally, if all else fails, the medical team can make the decision, preferably unanimously.
As doctors don’t like to use the word “God” and often don’t believe in God, the physician may need a chaplain’s permission and/or encouragement to use this word with the patient or her family members. Very frequently, doctors say that further treatment is futile and will even cause suffering to the patient, and the family says, “It’s in God’s hands.” (Which could theoretically mean that treatment should be halted and God will take it from there, but means in all cases that if God wants the treatment changed, He will personally see to it.) If a doctor could assure the devout family that God would not be angry with them for suspending ineffective treatment, that might be helpful in some cases.
Doctors may also need help using the word “death.” A fellow student recalled hearing a doctor tell a Spanish-speaking family that their loved one was “passing on,” a term they clearly didn’t understand and which, as far as my peer could tell, sounded positive to them. “Passing on? That sounds nice.” Perhaps it suggested to them an evening stroll.
The POLST form lists Physician Orders for Life-Sustaining Treatment, and is a fairly blunt instrument, covering just DNR/DNI status and nutrition wishes. I think. I’m in clinical pastoral education, so I don’t have time to go look at one online, but I’ve been present when one was filled out. Actually, I have one around here somewhere, but I don’t have time to go find it. The reason it’s the most authoritative is that, as an actual physician order, it’s something any medical team should accept.
(DNR: Do Not Resuscitate. The most common form of this is CPR: violent chest compressions. Your odds of ever leaving the hospital after CPR are low. DNI: Do Not Intubate, for the purpose of receiving oxygen. Once you are intubated, you very likely will remain that way for the rest of your life, and will either die with the tube sticking out of your mouth, nose or the hole in your neck, or you will die seconds after the tube is removed. There are also cases where a person is intubated briefly, successfully treated, and then lives on in good health for decades, but if the person already has a terminal illness, a DNR/DNI code status might be a very wise choice.)
Finally, the ethics committee member talked about two varieties of the situation where family members have to be told that no more curative care will be offered and that comfort care will be initiated:
1) Paternalistic: “We’re going to extubate tomorrow.” The family disagrees, but understands.
2) A unilateral decision by the medical care team, which requires an ethics consultation. The family does not understand and is opposed. The transition would typically be scheduled for a week later. This sounds terrible, but sometimes can actually be good, in the case of families who might personally agree with transitioning to comfort care but feel obligated by cultural norms to try every last medical option. This allows them to say, “We didn’t want this, but they insisted.”