Note- all names are made up to protect privacy
“Please stop the feeding tube—we made a terrible mistake!” These words were said in the hallway by a physician who had once been a colleague during an earlier period of my career. He was referring to his mother, now a patient at Baycrest on one of the complex units. She was semi-comatose from a stroke, and had a feeding tube in place.
“George, let us arrange for a meeting with you and your family and the staff on the unit to discuss this. A hallway is not a good place to deal with this, okay?” I expected to hear within a few days that a meeting had been called, but there was no message, so I assumed the situation had been resolved. The day before I was leaving for a conference in Chicago, I received word that an urgent meeting about the mother with the feeding tube was requested late that afternoon with the doctor, his sister, and their spouses.
“Michael, we realize we made a terrible error when we agreed to put the tube in when she was at the hospital. She had recovered pretty well from the other stroke, you know. Sure, this was a bigger one, but we hoped she would make some recovery. She has not, and now we can’t bear to watch her. She hardly opens her eyes, and we don’t think she recognizes anyone.” We went around and asked all the members of the family how they felt, and they all concurred.
The head nurse was a bit puzzled as she said that Rose had not deteriorated since she had come in; in fact, she was quite stable and not suffering at all. “Why now, all of a sudden?” she wanted to know.
“It is not all of a sudden,” Julie, the daughter, replied. “It is just that we have struggled with this for months and realize that we have to make a decision. We hoped maybe she would get sick or develop an infection, and then we could just let nature takes its course, but that has not happened. We really believe that, if she were able to speak for herself, she would never agree to this.”
The nurse’s face revealed some consternation, but she did not say anything more. The family stepped out for a few minutes as the small group of staff that remained, and I, as chair of the ethics committee, conferred. I reminded them, “The family does have the legal right to discontinue treatment. If they believe that is what she would have wanted, there is nothing more to say.”
“Don’t they need a living will stating just that?” asked the head nurse.
“Not really; if there is one, that may help, but, if the family believes this is what their mother would have wanted—and they are the substitute decision-makers—then that is enough. I will arrange for the order to be written in the morning.”
The head nurse replied, “I don’t think Dr. Klein will write it. I heard him say earlier today when he found out about the meeting that he could not write such an order for personal moral reasons.”
“Well, if he won’t, then I will write it in the morning after I speak to the staff on the morning shift. I am leaving in the afternoon for a few days in Chicago.”
There were some nurses, a social worker, and the dietician at the morning meeting the next day. “The family wants to discontinue the tube feeding,” I advised them. “We discussed it last night, and they all seem to agree. They feel strongly that she would not have wanted to be kept alive like this.”
“I don’t understand—how can they just do that? She is no worse than she was—we have really provided excellent care. This is like killing her. Are you sure our College of Nurses (the regulatory council of the nursing profession in Ontario) accepts a thing like that?” That was from a senior nurse, though I could see nodding from the other nurses in the group.
The dietician countered, “The College of Dieticians of Ontario certainly allows for patients to stop using tube feeding if they choose, or if their substitute decision-makers choose.”
“But you do not provide the day-to-day care,” another nurse piped in. “To us, it feels like murder. I don’t care what the law says, I can only tell you how I feel.”
“I know how it must feel to all of you who have provided such wonderful care,” I interjected, “but the family is allowed to do this. You have all had patients or families who have refused tube feeds, right?” There was nodding all around. “Well, had the family refused six months ago, she would have died then. They gave it a try to see if she would recover—and she didn’t. Isn’t it better to have given her the chance?”
“Well, it just does not feel good after all those months of nursing care,” replied the nurse. “She does not have even one pressure ulcer on her!”
I went out of the room, found the chart, and wrote the order to discontinue tube feeding and to focus on comfort measures, with mouth care and other excellent nursing procedures. I left that night, as planned, for Chicago. I heard nothing the next day, but that evening there was an e-mail from the clinical nurse specialist covering the unit. “The nurses are in an uproar. They say they cannot take care of her with this order—and they are going to complain to the College that they have been forced to compromise their standards of care.” I wrote back that they could do whatever they wanted with their College, but they could not withhold care that had been ordered. The nurse responded that the doctor on duty had not actually cancelled the order I had written, but was verbally supporting their position; and, in the meantime, tube feeding and all other care was being provided. Apparently, one of the nurses had asked the son how he and his family could do such a thing, and the son had complained to the head nurse about being spoken to in that manner.
Early the next morning, I called the physician who was running the palliative care program at Baycrest and explained the situation (palliative care focuses on easing the physical symptoms and addressing the psycho-social needs in individuals in their last stage of life when it is agreed that the underlying disease can no longer be treated in any beneficial manner). “I know this is not the way we should normally address this issue, but because I am away and cannot speak to the group directly, would you agree to transfer the patient to your unit and allow her to die in peace? Ask your team first, though, if they will have any problem with the process that has been requested and ordered by me.”
He replied in a reassuring way. “I do not have to ask the team. I know for sure they would view this as part of an acceptable framework for the terminal phase of a palliative care plan. I will arrange to transfer her today.”
I communicated to the head nurse, the clinical nurse specialist, and the attending physician with the following: “Under the circumstances, and because I am not there to speak directly to the staff, I have arranged for the patient to be transferred to palliative care in order to meet her end-of-life needs. Please inform the family. I will be back on the weekend, but am going away again at the first of the week. I will try to come in and see how things are going.”
I visited the patient (whose daughter was with her) on Saturday morning. She had been transferred Friday morning and was comfortable. “Has she responded to your being here?” I asked.
“Not at all, not since the evening before she was transferred. We think she is comfortable. The nurses are wonderful. I know her nurses from the other floor were very upset—they have been with her for almost six months and are very attached to her—but we had to make this decision. Thanks for helping us. How much longer do you think we will have her?”
“I would think maybe five or six more days or so.” I left town the next day, and three days later received an e-mail that she had died, peacefully without any problems.
On my return, we had a debriefing with the nursing staff and other members of the team. “The College said we had to follow the request of the surrogate and that we would not be deemed to be acting unprofessionally if we did so,” said one of the nurses.
“The College of Social Workers said the same,” was the reply from the unit’s social worker.
“I know that the College of Physicians has the same type of policy,” I added, “because that is what the law says: a person, or a person’s substitute, can refuse, withdraw, or withhold treatment if the person is capable of making such a decision or if the substitute believes that is what the person would have wanted.”
“But it came so suddenly,” lamented the nurse. “It was such a shock after all those months of looking after her, with never a word, not a hint.”
“I wish we could have spoken to the family so that we could hear from them what they thought was happening and why they made the decision,” said another. If we had, I am sure we would have been able to fulfill their wishes. This way, she died on another ward among strangers. We knew her—what a shame it happened this way.”
I could see that many of the nurses were upset. “I think you are right; it was a shame it happened so fast. I will do my best in the future to make sure the staff has more lead time, if possible, and that you can hear directly from a family member what they are experiencing and the decisions they have made. Hopefully, that way, you will all feel comfortable doing something which I know is very hard for you.” They all nodded and the meeting ended.