That First, That Hardest Step

What I remember best is her eyes as she was rolled away - so sad, so hopeless. I remember, too, how sad and powerless we felt, we who watched her go.

It was in the early '90's. I met the patient at her bedside. She was in a difficult situation: she couldn't breathe, at least not on her own. She was alert and oriented - she was all there - but she was in respiratory failure. Without the mechanical ventilator she would die.

She understood this quite well, really. She was a Registered Nurse with years of experience. She understood how sick she was. She understood what the doctors told her about her treatment and her prognosis.

All of which made it particularly important to us who cared for her when she said, "I want to stop." She tried first to say it, moving lips the rest of us tried to read. Once we thought we understood, we had her write it, holding a clipboard for her. "I don't want to live like this. I want to turn my vent off."

At the time, we in healthcare were wrestling with patient autonomy with an intensity I think we've since forgotten. Living Wills were relatively new, and uncommon. The Patient Self-determination Act was new, too, so legal standing for these documents was little understood.

Still, we wanted to follow her wishes. I don't recall anyone on staff who was arguing against doing so. Several of us talked to her, "just to be sure;" but once we were sure of her wishes and her prognosis, we were ready to do as she wished. If, after all, we are to respect the patient's autonomy, we need to respect is especially when they make decisions that we disagree or are uncomfortable with.

Which is where matters stood until the patient's daughters arrived. The daughters lived out of state; and while they loved their mother, the patient's choice of where to live and work had made it very difficult for them to be directly involved with her during her illness. When they did arrive, and learn of her decision, they were, not surprisingly, distraught.

We didn't know exactlty why they were so shocked and so resistant. There are issues that come to mind in such circumstances: guilt at lack of involvement with this illness, or for some past event that injured the relationship; differences that had grown up over the years over moral values; or even on occasion financial concerns. Often enough the parent has been distant so as to maintain independence - sometimes justified because "I don't want to be a burden to my children." As I recall, the differences of moral issues were most clearly expressed; but mostly they spoke of their shock and grief that their mother would make such a decision.

But, they were clear who had made the decision, and so they began to appeal to her. They were loud and clear and persistent. They were pleading, they said, for her life, and for the opportunity for time with her. They were her daughters. How could a mother deny them?

And in the end, she didn’t deny them. She changed her mind. Against her own sense of her quality of life, against her own sense of her values, she changed her mind. I will admit that when I think of this, my initial thought is, “She caved;” but that may perhaps be too harsh. Certainly, she acquiesced, and she made her decision, I think, less on the strength of their arguments than on the intensity of their emotions.

She changed her mind. Her daughters, with the help of social workers, found a facility to accept a transfer, a facility not far from where both of them lived. They arranged her transportation, a process made complex by her need to travel with the ventilator and the requisite professional support. They arranged it all to their satisfaction.

And not to hers. She still wanted to come off the vent, even at the cost of her life. But she had made her decision to accommodate her daughters, to continue to live with her limitations, to allow them to try to provide support and care. She had made her decision, and would live with it - literally.

Still, I remember her eyes when she left. I was there when the team arrived, and there as they went through the complicated process of disconnecting here and reconnecting there to make the transfer possible. Her daughters were there, somehow both anxious and hopeful, and happy with her decision. But she was not happy. I could see it in her eyes.

For a long time now I have been teaching about Advance Directives, the documents that might allow us to die according to our own values. I have spoken of the instructions one might put in a Health Care Treatment Directive, and of the agents one might choose to list on a Durable Power of Attorney for Health Care. I have emphasized having those documents where someone could get hold of them at 3:00 a.m. on a Sunday morning.

But what I have come to emphasize as the first step is to have the hard discussion. It is so important to discuss these concerns with those we love most, with those who will be with us in those difficult circumstances. It is important, not just to tell others what we want, but also to learn what they are willing and able to do. That may make things difficult. It may even cause disagreements on the one hand, or accommodation on the other. But it needs to happen first. It needs to happen before the documents are done, and certainly before the sickness unto death. For most of us, it is the hardest step; but for all of us it needs to be the first.

We need for those we love to know what we want, and we need to know what they can do, and we need to know before the crisis comes. I know how important that is. I can still see it in her eyes....