Curled up like a little child taking a nap, she seemed even smaller than her ninety pounds. She was clean, her hair in a tidy braid, her skin soft and moist, and she had no signs of skin breakdown or bed sores, the absence of which told us that her son clearly took time bathing her, using moisturizers, and frequently turning her to prevent prolonged pressure on any one area. Sometimes she would open her eyes but they did not register any recognition — even of her son, even when he called her name, Eva. Mostly now at 88 years of age, she just lay there all curled up, no longer able to uncurl, eyes closed.
We could get no response from Eva unless she experienced pain. Turning her would sometimes bring a cry and trying to stretch her contracted limbs always brought one. She wore a diaper that was changed regularly by her son at home and by our staff when she was in the hospital. A few years earlier she would wake up and could be fed. That ability had slowly vanished and her son elected to having a feeding tube placed as her sole way to receive nutrition. He wanted to keep his mother alive as long as he could. Her diagnosis? Advanced and advancing dementia, a combination of Alzheimer’s and small strokes.
Eva’s caregiver was her son, a man in his fifties who immigrated with her, leaving his position in their home country. His only income was the state support as his mother’s caregiver. Every few months Eva would develop some malady—a cough, a urine infection, or mysterious fevers. We would hospitalize her, noting that during her stays, her son rarely visited. This limited our ability to form a relationship, a partnership with this important person in Eva’s life, but we believed everyone needs a break. For that reason, his absence did not bother our interns and residents or me and the other faculty doctors. Usually after several days, we would pronounce Eva well enough for discharge and he would come and get her or be at home to receive her when the cabulance brought her home.
When Eva’s condition progressed to the unresponsive curled up, unable to uncurl or respond being, we initiated a conversation with her son who had durable power of attorney for health matters. If her heart stopped, what would he want for her? What would she want? He was adamant that he wanted full resuscitation. We talked with him about how she was in the terminal stages of Alzheimer’s and asked him about the quality of her life. He remained firm: resuscitate her if she needed it.
There often are family fears around this discussion of what we call the “code status” (the do or do not resuscitate). Will we give antibiotics if needed? Are we stopping all treatment? Will we be less attentive to someone who is a “DNR” (do not resuscitate) than to someone who is “full code” or do resuscitate? Where is the line drawn? We emphasized that our care would be ongoing and we would aggressively treat the reason she was in the hospital. The question was a what if. What if her heart stopped? What if she needed to be intubated? He did not change his mind. He wanted her to be a “full code.”
Medical futility is a situation when intervening is not likely to have a good outcome or to produce good quality for the person. There are easy examples: should a person with advanced lung cancer, with spread to other organs, be given an organ transplant? When we think about the rususcitate or not question, age and other medical conditions influence the predicatbility of success. For Eva, if her heart stopped, indicating she was basically trying to die, the likelihood of surviving a full resuscitation was less than 1%. And “codes” are brutal: ribs get broken, livers and spleens lacerated, lungs punctured. This is certainly not all the time, but the older and more frail a person is, it is more likely that it will result in what feels to us like torture and it is least likely that the person will survive. Some states allow a physician, with certain protocols to say it is medically futile.
There have been times when it is clear to me that a family knows they do not want to prolong suffering and yet are incapable of making the decision to have an order of “do not resuscitate.” When I talk about the odds for the patient as being exquisitely low and say I can sign the form saying and documenting why it is medically futile, they are grateful. This was not the case with Eva’s son. He wanted the “full code.”
What could I do? What should I do?