A recent opinion piece in the New York Times caught my attention: “Who Are We Caring for in the I.C.U.?” I thought it would just be another exasperating chronicle of the staggering disproportion of unvaccinated people needing intensive care compared to the vaccinated. But I was wrong.
Dr. Daniela Lamas is a pulmonary and critical care specialist. In the article, she addressed a topic that often arises in the care of critically ill patients: what is a physician to do when the family of a loved one wants interventions that are clearly useless in a terminally ill patient who is unable to make his/her own decisions?
Dr. Lamas tells the story of a family’s request to transfer a Covid-infected patient with respiratory failure to her institution, a larger hospital with greater resources than the transferring hospital. Talking to the ICU doctor at the other institution, she felt that her hospital could do nothing that the other hospital had not already done. Moreover, the transfer itself could be dangerous.
Nevertheless, she OK’ed the transfer. Why? First, let me tell you of a wise observation one of my esteemed medical mentors told me years ago: the care of the demented patient is largely the care of the patient’s loved ones. This acknowledges the paucity of effective therapies for patients with end stage dementia, at the same time understanding the needs of family members. They need to know that all reasonable interventions are being undertaken for loved ones, that the patient will be kept comfortable, and that mortal decisions are understandably excruciating. Sometimes, misplaced guilt needs to be alleviated. .
So Dr. Lamas’ action implicitly acknowledged the needs of the members of the family–they needed to know that they had done everything possible for their loved one. Her decision was one that benefitted the family, but did not hurt the patient (the patient died two days after the transfer). Her approach went beyond the mere X’s and O’s of medical care.
Families’ desires frequently are at odds with what a physician thinks is appropriate for a patient. In the absence of a patient being able to make decisions (and in the absence of an explicit advance directive), some families want every measure taken that preserves life–every second of life is precious regardless of any other consideration.
Many times, I have been in a situation where family desires conflict with my own sense of doing what is best for a dying patient. Life is precious, but in desperate situations, my priorities were ensuring comfort and dignity.
I have never come to peace in such fraught situations. Physicians are taught, number one, to be the patient’s advocate, and doing CPR on an imminently terminal, hopelessly ill patient does not seem to be in the patient’s best interest.
With Dr. Lamas’ thoughtful commentary, however, sheds light on the less than obvious challenges in making good decisions in the care of terminally ill patients.
outstanding piece, Jim
But what would happen if Dr. Lamas’s patient did not die after two days but lingered on in the ICU? Would she continue to try to placate the feelings of the relatives while the patient’s discomfort might increase and the considerable costs of intensive treatment added up? Residents I used to work with would talk about elderly patients who were admitted with terminal illness, some partly because of inadequate care at home, but were now being kept alive because their relatives insisted, possibly because of guilt, that the patient be given all interventions.
I certainly don’t want to add another costly layer to our medical care, but I wonder if a mediator might be effective and even cost-effective in such cases. A professional versed in dealing with end-of-life issues could help relatives coping with the difficulties that can emerge when these decisions are considered.
A friend of ours has a child who was born with a rare and serious skull anomaly, which has required making multiple decisions about care, including risky surgeries. He even moved his family to another area of the country for some months so his child could be treated by a specialist in one particular area of pediatric cranial surgery. He speaks of trying to make the right choices after hearing his options from the doctors, and anguishing about making the correct one. He has now quit his job and is trying to set up a network of counselors to assist other parents who need to deal with similar difficult decisions.
In our ever-more-complicated medical world, this idea should be considered, for the old as well as the young.
Your comments speak to the ambivalence I have experienced when family wishes contrast with my own values. I like the idea of a mediator, especially as some of seemingly counter productive wishes spring from distrust of the medical system. I rationalize some of the extreme interventions doctors take by noting that the waste in medical care is staggering–toxic expensive chemotherapy in the hopelessly ill, promiscuous ordering of useless tests, etc. As in Dr. Lamas’s scenarios, there is a least some palpable benefit, even if it is not for the patient.