Abstract
How could these people who say they are healers be so harsh in their judgments? Who are they to doubt her motive in the decisions she is being asked to make? “Who the hell do they think they are? Damn them!”
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The doctors had been struggling with the management of their critically ill patient from the moment of admission. The first challenge was identifying someone who could give consents. Al's private home health aide visited him every day in the ICU. She reported that up to the moment of this hospitalization, he had taken care of everything. It was his body, not his mind that had failed him. Because of a degenerative muscular disease which rendered him a cripple, he needed assistance with all activities of daily living. She had been with him for the last six years; she was like family. She said she was his health care proxy, was willing to sign consents and direct care, but had no supporting documents. The doctors did not feel comfortable with that. Al's lawyer, who had power of attorney, did not want to make health care decisions. He knew of a cousin. He would try to locate her and ask her to call the hospital.
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And then Johanna appeared with a paper in hand that declared her Al's legal proxy. She told the team about her extraordinary older cousin. He was a wonderful, generous man who never married, worked as an accountant well beyond the age of retirement, and when the disease that plagued him made walking so painful, he kept himself working and even continued traveling abroad. He is engaging; a charming man. She would have liked to have seen him more during these last years but she lived some distance and she had her own problems with her own family. He was the last of his generation.
Al had friends, neighbors, but when Johanna's father died, that left her as his only living family member. Three years ago he asked her to be his health proxy. She never thought it would come to this. While his body had failed him for years, his mind was always clear, intact, better than people half his age. The doctor asked if he had talked about the care he wanted. Johanna did not understand the question. Given that he is as sick as he is, how aggressive would he want us to be? “Is he dying?” she asked. “He is a very sick man.” Johanna recounted the course of a long illness, the will of this man not to fold in the face of adversity, and the burden she now felt in having to be his voice. “What are his chances? Will he get better?” she asked. The doctor spoke about his progressive disease, his chest x-ray, infections and his response to antibiotics. Johanna asked again, and again there was no clear, definitive answer. Prognosis, probability, but no clear answer to a very clear question: Will he survive, will he get better? “So be it,” said Johanna. “Do everything you can to get him better. Al's a fighter. If there is anyone who can get through this, it's him.”
Al's doctor called Johanna five days later. The patient, still in the ICU, on a ventilator, was certainly not getting better, and in fact was started on a medicine to help support his blood pressure. He explained a Do Not Resuscitate order, and she reluctantly consented.
Johanna visited Al on the weekend. She expected him to be unresponsive. He was not. He was confused but did recognize her and for the next hour spoke of the old times and old friends. Johanna talked to the doctor. He spoke about prognosis, she talked about his remembering the old times. He was speaking one thing, Johanna seeing another. As she left the ICU, she revoked the DNR. She would be back next weekend.
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The call came on Friday morning. The doctor said Al had taken a turn for the worse. She will leave work and come to the hospital.
“How long will that take?” asks the doctor.
“A two-hour drive.”
“The DNR needs to be reinstated,” he says.
“Can't we wait?”
“The blood pressure is dropping even with the maximim doses of pressors.”
“Wait,” she answers.
Johanna doesn't know who to trust anymore. She had this conversation with him last week and Al is still alive. It is not easy to say no to the doctor when he insists that yes is the only right answer. It is so hard when she hears them challenging her motives. Motives. What other motive than not wanting to give up on a life? Have they forgotten what value life has? They speak of a patient suffering. What about a patient dying, especially at the hand of a relative's decision. As certain as Johanna is that waiting until she gets to the hospital is the right decision, there is still doubt. After all, the doctor, without saying the words, is letting her know she is making the absolutely wrong decision.
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Johanna is sitting with the hospital's ethicist next to Al's bed and talks about the DNR. She feels bullied by the doctors. “They are so quick to pronounce the death sentence. Don't they realize how difficult these decisions are? What do they know about this man? How dare the doctors, with their attitude of impatience, stand in judgment of me!”
“Look at him,” she says. “Now it's time for the DNR, but last week?” Her eyes swell with tears as she sits quietly gazing at this man who has always been part of her life.
“There are other decisions that can be made,” says the ethicist. “There is nothing more that the doctors can do to get Al better. There are things that can be done to make his death more comfortable.” He talks about the difference between treating for comfort and treating for cure, and the choices that can be made. “No more needles, bloods, or medicines that are not for comfort,” Johanna decides. And finally, what to do about the respirator? She knows there is medicine to be given if the patient begins to struggle with breathing. Still it is more than she can do. “Leave the respirator.”
It is done. The goals are clear, the plan is clear, and Johanna, at peace with her decisions, sits at Al's side and reminisces about the magic her older cousin brought into her life when she was growing up. And then the doctor comes into the room and administers a dose of medicine through the central line. She asks about it. He says this is an abnormal lab value and the medicine was already on the unit, so he gave it. “He's only supposed to get medicines that make him comfortable.” He shrugs his shoulders and leaves the room, mumbling about treating the abnormal value.
Johanna stayed at Al's bedside that night until he died. His death was as peaceful as she could make it. There was no more sticking, poking, or administering of medicines that had nothing to offer this dying man.