The care was futile, and the patient’s wishes

“We have a patient on a ventilator here who is stable enough to transfer to your ICU, if that’s OK with you.”

This call, coming from the transfer coordinator, is emblematic of an insurance generated “medical care” coverage issue. I am salaried under the patient’s insurance carrier so the insurer wants this patient back under its wing as soon as possible.

The community hospital has been keeping Stella Norris (not her real name), an 89 year old woman, as long as possible. She is incapacitated from a massive stroke suffered five years ago. There is a feeding tube inserted through the stomach wall and she has needed total body care. 911 was called when she stopped breathing and she was taken to the closest hospital.

The daughter, Janice, seldom visits because there is no ability to communicate. The home care has been given over to George, a step grandson. George has devoted his life to care for Stella, day and night in his small apartment. He believes in miracles, he says, and spends his days reading about alternative medicine and watching televangelists on TV. He says God speaks to him.

The precipitating event at the community hospital, I learned later was this. George is found in the ICU briefly disconnecting the endotracheal tube from Stella’s ventilator and inserting herbal medications down the tube. The alarms go off, and the nurses are so horrified they now designate the patient stable enough to transfer. Yes, loss of income for the hospital, but a real problem patient out of their hair. The are delighted to “turf” (medical slang for passing your problem patient to someone else) to another institution!

I admit the patient, get the scoop from the referral medical team, and examine this very debilitated ill woman. She does not respond to any verbal or physical stimuli, has shrunken limbs on the right side of her body, has bed sores, infected urine and a pneumonia on chest X-Ray. I confirm with the family that she has not been responsive or out of bed for five years. They are, however, delighted with the care that George has provided.

At our first family conference the daughter, Janice, seems reasonable and understanding when I probed the issue of Stella’s wishes for invasive care. Stella had no known Advance Directives. Janice says, “I’m really not sure Mom would have wanted any of this. I’m certain I wouldn’t want any extended care like this for myself, but…”

I explain in detail the poor outlook and the process of prolonging death that we are providing with a ventilator, tube feeding, antibiotics, etc. There is a dynamic that I can’t figure out. George has sat there quietly with a scowl on his face, never nodding in agreement.

“George, what are your thoughts?”, I ask.

“I know she’s not ready to die. God and spoken to me and I know.”

Janice and other family members subsequently back off, don’t want to attend family conferences and defer to George. They seem intimidated to challenge him, even though I say he may not be acting in Stella’s best interest.

The next week George posts a notice in the ICU for Stella’s memorial service – more than three months hence! I try to confront George and the family to no avail. We discus the case at our Ethics Committee of which I’m a member and they designate the Hospital Chaplain to try to intervene. He’s unable to connect in a rational way with George. The Ethics Committee reminds the daughter Janice that under Washington State law, that she has legal decision making authority. Janice again defers to George. Our legal department is contacted and says we could try for a court appointed guardian, but that the guardian would be very unlikely to go against the wishes of the daughter.

After eight weeks in the ICU, Stella begins to worsen. The circulation begins to fail and her entire left arm becomes cold and gangrenous. The orthopedic surgeon does not offer amputation because she wouldn’t survive surgery.

About this time, I finally tell George that I’m unwilling to do CPR or electric shocks to restart to heart when it stops. He gives me a vacant look devoid of visible emotion. It gives me the creeps, and the nurses begin to freak out wondering what George will do at Stella’s death.

The end is weirdly peaceful. She dies with George there. The heart has flat-lined but the ventilator continued to puff fruitlessly. I receive this call in the evening at home. I’m beat and really don’t want to drive back in but I need an experienced forceful doctor at the bedside.

Then I remembered my buddy Don, the burly no-nonsense ER doctor was in house. “Don can you do me a huge a favor?”

So after asking the nurses to call Security to have them present in the ICU, Don agrees to pronounce Stella dead, and to tell George (I think I still owe Don for that one).

George receives the news, leaves the hospital, and we never hear from him or the family again.

Comment: Futility is medically hard to define, except in extreme cases. This one qualified in my book, but we felt impotent because of hidden family dynamics and mental illness. Was George really crazy? Was a social security check or other financial benefit a motivator? Did George control the inheritance?

A few years back, Dr. John Luce wrote an article in the medical journal Chest where he compared the care of this kind of patient in France and in the USA. The French doctor said, “No problem. In France, we have limited visiting hours and the families look to the doctor to make decisions. When the family is gone and we’ve had discussions, we simply remove the ventilator and let the patient die peacefully.” In contrast, the American doctor said she “tried for consensus and shared decision making giving autonomy the highest value. In some situations consensus was difficult or impossible to achieve”.

The problem in this case was that the patient’s wishes were never known, the care was futile, and everyone lost out.

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

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