Tom and Anne

On a Sunday afternoon in late May, Anne asked if I could come over to talk about her brother, Tom. Anne and Tom were extremely close, but Tom was unmarried, and because of his multiple long term medical problems, Tom lived in a nursing home. Despite the special technical care provided by the nursing home, Tom was now at the end of his life. The family was aware that Tom was too weak to make a clear determination about his own future. They needed help in organizing their information in order to decide if Tom should be moved as he approached the end of his life.

The questions Anne raised with me were: How can we allow Tom to die? Is it right to allow him to die given his present medical condition? How do we know when it is "right" for someone to die, given their particular circumstances?

There is potential in every human spirit, no matter how weighed down. I needed to identify Tom's reach, get his sense of direction, and help him get where he wanted to go. I had many tools at my fingertips: tools of a clinician, tools of a spiritual advisor to many nearing death, and tools of an ethicist. However, when I first went into Tom's room, I went to meet him as a person. In living or in dying, Tom was a person to me, not a "case."

When I first visited Tom in the nursing home, he was in a wheelchair, too weak to walk, and clearly not at peace. Tom was a man who was not afraid of dying, but was definitely afraid of living much longer in his present environment. So Tom was taking his own steps to safeguard against living a longer life: refusing food and describing himself as having a "heart attack." He did not want to eat, did not want to take his medicines, and did not want to be in any nursing home. During my visits to the nursing home, I took Tom to the dining room for his midday meals. I realized that the nursing home staff would not allow Tom to stop eating his meals; the nursing home regulations and legal restrictions did not permit any deviation from this particular routine.

Tom and I got to know each other very well during my two visits at the nursing home. When I first saw him I knew that I had to find out what he wanted, and find it out quickly. The nurse in me knew that he was too weak to live much longer, though he had no clear precipitating cause of death that any medical personnel would identify. During my time as a nurse, we used a diagnosis code called "distress of the human spirit." Tom was experiencing this kind of affliction, and there is no prescribed plan of care to help someone who is experiencing such distress.

Tom's family knew the seriousness of his problems, but they felt torn, knowing that if they allowed him to die, they would also be losing him. They loved him! Tom, though very frail physically and mentally, was actually a huge help in the discernment process. I suggested to him that the combination of his experiences was, at this point, more a spiritual event than a physical event, and I explained how this was so. I assured Tom and his family that if he wanted to die, neither this nursing home nor a hospital was the place to be.

I consulted with his family and physician, and we devised a plan to move him to a local inpatient hospice. Tom's family transferred him to the hospice later in the week. We were able to accomplish this because the family, doctors and our Center worked together. Everyone was always in step with one another.

I went to visit Tom just after he was moved. He sank back into his pillow and heaved a huge sigh of relief: "Thank God, thank God," he kept saying. Tom died a peaceful death five days later.

The Role of the Center

The Center's Director...

1. Worked with the family to obtain family and medical history;
2. Developed a relationship and established trust with Tom in order to hear his story and understand his case;
3. Continually communicated with and guided the family to help them decide their course of action;
4. Dialogued with the family to help them accept or change their decisions;
5. Coordinated efforts between the family, doctor and nursing home to provide Tom with the best care possible;
6. Visited Tom in the nursing home and hospice.

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