Supportive Voice   Vol. 9 No. 3   Summer 2003

by M. Joyce Hutchinson, RN

Ms. Hutchinson is the Palliative Care Coordinator/Hospice Educator, Mercy Medical Center-Des Moines, Des Moines, IA. She can be reached at 515-643-8633

This is the story of the death of one man and how he chose to exercise choice and control over his last days. "Daniel" was 55, married, with four grown children. He'd spent much of the past two years in the hospital-197 days straight during this last admission. I would stop in occasionally to have a social visit and offer comfort.

One day, he asked to see me. He told me he wanted to go off the ventilator and "let nature take its course." When I asked him why, he said that he'd had to depend on the machine to breath for him for so long, and it felt like "begging to breathe." He said that he didn't want to depend on it any longer and that if he was taken off and he died, that was okay. "This is no way to live," he said and added that he was very tired. I explained that it was his choice whether or not to continue on the ventilator or to have it taken off and try to breathe on his own. He understood that he probably wouldn't be able to breathe very long without it but that no one could know for sure.

Would God be mad at him, he worried, if he stopped the treatment? We talked about the difference between deliberately acting to end your life, as with physician-assisted suicide or euthanasia, and choosing to stop a treatment. In his case, the ventilator was breathing artificially for him. Going off the ventilator would mean he'd be breathing on his own, as long as he could, whether that would be minutes or days.

Daniel repeated that it was very difficult to live this way, with no hope of ever getting off the ventilator. His condition had been deteriorating, and he was requiring frequent suctioning. "I am sick of begging for air, and it's getting worse all the time." He seemed very clear and very sure that this was what he wanted to do. He asked if I would help him talk to his wife.

We set an appointment for the next day. His wife, "Katy," was accepting of his decision to stop the respirator. "I would never be ready," she said, "but I understand his wanting it, and he's been very patient about the life that he's endured all of this time." She also reported that she had observed that he hadn't seemed as physically well in the past several weeks. They each seemed sad and shared their sadness-and also their acceptance-mutually. He reported that he would like to talk to his four children and their families and that he would like his brother to come from out of state. He figured that it would take about a month for him to do everything that he wanted to do, but then he wanted the ventilator turned off.

I asked him if there was anything that he could think of that he would like to do one more time. After very little thought, he said, "I would like to see one more harvest of the farm crops."

No sooner did the staff on his hospital floor hear about his wish to see that last harvest than they started working to make it happen. The unit nursing director, the care coordinator, and many of the staff planned the trip. The staff, Daniel, and his wife decided to go on the following Sunday as the weather prediction was for a warm, sunny day. On that bright, beautiful, sunshiny day, Daniel, Katy, a nurse from the unit, two respiratory therapists, the Mercy hospital shuttle, and the respirator made the trip to Daniel's town and farming community. He sat in the van and watched some men harvesting the crops. Katy had moved since Daniel's last hospital admission, so they drove past her home so Daniel could see where she now lives. They went to the home of one of his siblings, who came to the shuttle to see Daniel. They went through McDonald's, where Daniel's daughter works. He came back to his hospital bed some four hours later and reported that it was a great day and a more wonderful trip than he could have imagined. He appreciated seeing that harvest, he said, more than any other he'd ever seen.

I continued to see Daniel regularly for the next four weeks. He seemed very reflective and enjoyed telling me about his life. If he had it to do over, he told me, he would have been a farmer instead of an over-the-road truck driver. It took too much money to start farming, he said, but he'd always loved the land. He'd grown up on a farm; he learned that love as a child.

He shared with me that there are not many men as lucky as he was, to have such a wonderful, good wife. He talked about her with so much feeling that it must have been his heart speaking. His four children also had been a special joy in his life, he told me, and if he had any regret, it was that he was on the road so much that he missed out on much of their growing up. He spoke of his 10 living grandchildren and one grandson who died when he was three months old of Sudden Infant Death Syndrome. We both wondered if that baby wasn't anxiously awaiting Grandpa. He could hold him, rock him, and tell him about his mom and dad and about Grandma Katy.

Daniel talked about the good times that he had had and how good life had been to him. He didn't change his mind, though, about having the ventilator removed, even though it was only a little more than a week until the date he'd chosen.

As the date approached, he and his wife and other family members spent time together, sharing things they might never have shared otherwise. Daniel's wife reported that even though it was a sad time, it was also a very special time to say the things that they wanted to say to each other.

Observing them from afar, it seemed that even though these last weeks were difficult, it was also a very special, intimate time for them all. Maybe that wouldn't have happened if he had died suddenly, without much thought being given to dying. What a gift he gave his family to invite them to share in his thoughts and feelings about the end of his life and in his desire to help them accept it as a natural part of life.

For the staff, it was a privilege for us to observe someone peacefully prepare for the end of life and valuing each day, even as we continued to hope that when the ventilator was stopped, he would live peacefully and with dignity until his life on this earth was complete.

The day arrived. Daniel's family was present as he was slowly weaned from the ventilator. He was peaceful and drowsy and appeared comfortable. They reminisced about his life and told him of their love for him and cried and laughed together. His dying reminded them of the importance of family and the gift that they all were to each other. He died peacefully four hours after being taken off of the respirator.

I called Katy just before Christmas to see how she and her family were doing. They were sad and missed Daniel, she reported, but they were doing fine. She often thought about how much nicer his dying was, she told me, than if the nurse had called her one day to say, "Could you come right away? Daniel isn't doing well." She knows she wouldn't have gotten there in time, she said. She is so grateful that they got to be a part of his dying, instead of hanging onto unrealistic hopes that he would be okay and then one day being told that he was gone.

Daniel's experience touched all of us. We watched a loved and loving man thoughtfully prepare for death, surrounded by his family. Dying is as normal as being born, and when we can look at it as a normal process, it holds as much love and celebration as coming into this world does.