Are Nurses Ready for Patient Directed Health Care?

By Rose O. Sherman, EdD, RN, FAAN

Several weeks ago, I interviewed the Chief Nursing Officer for a large healthcare system. We talked about her role and the challenges that nurses will face with healthcare reform. During our conversation, she made an interesting observation. In the future, she said, Patients need to be taking control of their health care, and we need to be prepared for what that might look like. We might have patients telling us no, I don’t want this, or I am not going to do this, or thank you for your advice but I am going to go this other direction. I think as nurses it’s our obligation to support those decisions. I do think that is going to be a challenge for some nurses Patient directed care is very different than patient centered.

This conversation brought me back to my own experiences with my mom in the last four months of her life. She had been a very vibrant and healthy 83 year old until she developed CHF, and her condition rapidly deteriorated. She was diagnosed with two very large cardiac tumors – that were thought to be myxoma or benign tumors but the only sure way to know was to do open heart surgery. By the time she was properly diagnosed, she was in pulmonary edema and her condition was critical. As I sat with her in the Intensive Care Unit, I asked her what she wanted to do.

My mother had a reputation of being a very strategic decision maker – everyone who knew her sought her advice on their problems. She had emigrated from Ireland as a young adult and had an Irish brogue and quick wit. The young cardiologists in charge of her case were recommending immediate transfer to an academic medical center for cardiac surgery. They were very inpatient to get a consent form signed and have her transferred.

My siblings and I agreed that Mom would call the shots on her care. I would give her advice but the decisions were for her to make as long as she was mentally capable. She told me that she had decided not to have the surgery. “I may not even make it off the operating table and if I do, I will be in a nursing home. I don’t want that and I have a strong sense that this will not end well if I agree to this treatment. What I would like to do is to go on hospice and begin medical treatment to allow me to live whatever time I have left – in my home.”

The cardiologists and some members of the ICU nursing staff were shocked that she would not agree to the surgery. She was made to feel that she was giving up on her own life. I staunchly defended her choices telling the team that this is a smart person who has never made a bad decision in her life. Throughout my nursing career, I have learned to trust the intuition of patients about their own prognosis. There were a number of critical care nurses who approached me and told me that I was doing just what they would do if it were their parent but not everyone felt this way. We took Mom home on hospice. She had 3 high quality months of life with an outstanding hospice team and died during the 4th month. I know we made the right decision for her.

With healthcare reform, patients will be expected to have a much higher level of engagement and many patients want to help direct their own care. There is a fascinating website called Patient Driven Care that provides a glimpse of what we will see much more of in the future. This will mean that health professionals will need to shift their perspective. With online information and social media sites, patients have access to great resources to make their own decisions. Ultimately, we need to encourage not discourage this personal responsibility for one’s health but it may require a change in how we think about the nurse-patient relationship.