On His Own Terms
by Gail Ferguson, RN

My new patient bragged constantly about living on his own terms. I could tell from our first conversation that he would be a challenge. He was a 68-year-old male who had congestive heart failure (CHF) and lived alone after a recent below-the-knee amputation.

Only after using all the communication skills I had learned did he agree to let a nurse come to his home. Through my phone calls and the eyes of the nurse, I was able to assess that his home was far from being safe or accessible. One example to illustrate this was that he could not take a bath, as the bathroom was not wheelchair accessible.

Through the years, he had alienated all his family and friends, and he was truly all alone. He told the nurse he would only let her come once. But he was falling often and he called the rescue squad weekly to be removed from the floor. I was finally able to get him to tell me why he would not let the nurse come out. It was because she was female, he said.

After many calls, he started to communicate, and we were able to set some goals — the ones that he wanted, but not the ones I felt as a professional he needed. It was hard for me not to force my values and ideas on him of what was an acceptable quality of life. He agreed to a male nurse and a male physical therapist. We were able to get him a wheelchair ramp and have his bathroom remodeled by Habitat for Humanity. But he refused any other help that I offered.

He began to get stronger and had fewer falls, but of course, all of this was not without him calling all the shots and being “difficult” in the eyes of all involved. However, I had come to understand him and realize that this was his way of keeping his autonomy and some control of his life. He would only let people in his house at the times he dictated. The plan of care was coordinated under his terms and his timetable.

I still felt he needed to be in a safer home environment, and I worried about how he would get out if there was a fire or some other disaster. As per protocol, I contacted the Department of Human Resources (DHR), the organization we are required to report abuse and neglect to. When the case worker came to the home, he would not let him enter. Compromising on living alone was not an option. He felt he had compromised greatly by letting the nurse and the physical therapist into his house.

After several months, I was able to get him to agree to let me come to see him, and I was excited about meeting this “difficult” man. On the day of my planned visit, the home health nurse called me and told me not to come. He had found my friend — yes, my friend — dead at home. I agonized over this for quite a while, wondering what else I could have done for him. But I came to realize that he lived and died as he wanted — on his own terms.