Medicine is slowly facing the issue of futile care

The voice on the phone is demanding, quavering, pleading; “Dr. deMaine you are going to be the attending critical care doctor when our mother is transferred to your hospital today. She needs to be taken off the respirator and allowed to die. We have been pleading with the doctors at the burn center, but they keep doing more procedures. We want her off life support as soon as she gets there.”

I am a bit taken aback since I’d never heard of the patient, let alone that I am destined to be her doctor in the ICU. I tell the family to try to come to the hospital to meet with us today when the patient arrives.

After hanging up the phone, I receive the call from the transfer coordinator, “We have a patient in the burn unit who is 87 years old. She has 50% third degree burns and 20% second degree burns. There have been multiple grafts. The complications have been pneumonia, stroke, heart failure and adult respiratory distress syndrome. The house staff will fill you in. They think she should stay there but the family is very unhappy that the patient is suffering through all these treatments.”

In thinking about this, I first reflect that it’s not too uncommon that the family feels left out in critical care decision making. They sometimes don’t understand that a sick relative may look awful, but still have a good chance of recovering. Lots of communication is needed, but the doctors often don’t have the best skills in this area. It can be very hard to switch from a “curative mindset” to a “palliative mindset” for all involved.

I’m paged to the ICU when she arrives by a life-support transfer Medic One team. This unfortunate woman has now been on life support for one month. There are multiple burn grafts in place. She is unresponsive to verbal or physical stimulus. The blood pressure is marginal, kidney function poor, liver functions elevated, and chest x-ray diffusely abnormal. If this were a young patient, there might be some hope but this woman is going progressively downhill. It’s a tough call. If the patient could talk to us, what would she want?

I meet with the family, the new RN team, and our social worker in the conference room. After introductions, I give them an outline of the process we’ll use over the next half hour to go over their Mom’s care. First we review all the medical facts and time-line of hospital care so far. Then I outline the options for further care including discontinuing care – and the benefits and burdens of each possibility. We discuss her daily life prior to the the fire. Her son and daughter, Jerome and Ada, describe her as a happy person yet very limited over the past few years due to arthritis. She was feeling isolated because all her contemporaries had died.

We then discuss her wishes for aggressive life support care. She has never signed a living will or executed a durable power of attorney for health care. Her husband is deceased, so under Washington State Law, the decision making authority rests with her two adult children who must agree. Both are adamant that Mom would never have wanted this kind of aggressive care. She has been ready to “pass on” for some time.

Jerome says, “It’s bad enough to die once in a fire, but dying every day in the ICU is just too much!”

After nearly an hour of discussion, which includes the nurses and social worker, all agree that the most reasonable course of action is to remove the ventilator. I ask the family to step out of the room. Then I turn off the monitors in the patient’s room, make sure the patient is still unconscious, turn off the ventilator and remove the endotracheal tube.

Jerome and Ada are at the bedside holding mom’s hands as she exits from this world. There are tears of both sadness and joy. The nurses and social worker continue to be supportive and help the family with the arrangements that need to be made.

Comment: About 70% of all deaths in American ICU’s occur by removing life support. Heroic attempts have been tried, but ultimately failed. Medicine is slowly facing the issue of futile and expensive care at the end of life – a time when patients, families and medical care givers often prolong care far beyond a reasonable limit.

The day after the patient’s death, I got a call from the surgical resident in the burn unit, wanting to know about the patient’s grafts and general status. I explained as gently as I could that we removed life support at the request of the family. The surgical resident wasn’t happy.

Jim deMaine is a pulmonary physician who blogs at End of Life – thoughts from an MD.

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