John Doe

The following story was written by Lynn Cannon , a nurse who worked for 24 years in intensive care units in hospitals. She now works in the recovery room at Provena Mercy Center and teaches at Lewis University and Waubonsee Community College. She holds a bachelor's degree in nursing from Marycrest College in Davenport, Iowa and a master's degree in nursing from Northern Illinois University. A resident of Naperville, she has two grown sons.

I was working in the recovery room when a colleague from day surgery called to ask if I would help her get a patient ready for discharge. When I got to the bedside, I found our nurse, CS, visiting with the patient's wife. She explained as she asked the wife to step out that we needed to change the patient's diaper and get him dressed. She also said that even though the patient (I will call him John Doe) was cared for at home by his wife, she wanted to give her a rest for the short time that John was with us.

John was young, at least younger than I am, but, with a progressive neurological degenerative disease, he had been robbed of just about all movement and was completely dependent on someone for care.

I tried to avoid his eyes while we changed his wet diaper, but I could feel his eyes watching both of us. I wondered what he was thinking as these two strangers rolled him from side to side, pushing and shoving crinkling plastic diapers. Whatever it was, we could only guess, for the terrible disease toll included his speech, too. When we got to the point that I could finish by myself, CS went to finish discharge instructions with John's wife because the Medicar was scheduled to arrive soon.

CS and John's wife were still talking when they reentered his room. John's wife was saying that it was getting harder and harder to manage at home. This required their 19-year-old daughter to live at home and attend a nearby junior college so that she could also help with John's care. Other assistance came from their son, who was in high school.

John's wife said that she didn't know how John had managed to pull out the feeding tube again, but this was the second time that they had to transfer him to the hospital for reinsertion. I thought to myself "where there is a will, there is a way," and I felt that perhaps we all needed to take a step back and look at this situation.

If this had been one of my inpatients during the years that I worked in intensive care, I would have proceeded to delve further into the story with both John and his wife. What exactly were their wishes and what decision-making capacity did John still have? I would have called the ethics consultant that very afternoon.

I doubt that pulling out the feeding tube was an accident. You understand that I have spent the majority of my nursing career on the inside, looking out -- of the hospital, that is. Now I am frequently exposed to outpatients in both recovery room and in our sister unit, which is day surgery.

On the inside, there are processes and structures to assist us in everyday ethical decision making. But what is there "on the outside"? More and more of our healthcare is being delivered "on the outside." Thousands of patients like John and his family struggle without much support for making ethical decisions about life-sustaining treatment. Healthcare providers must understand the basic principles of ethics and how these apply to our patients wherever those patients are located. We need a place where more objective advice and expertise can be obtained.

First, families and caregivers need education; then end-of-life care-giving could be made within the community and family setting, not in the sterile and cold environment of some emergency room. Strong leadership is needed to get people talking and sharing some honest feelings about their beliefs and hopes.

In her description of John's case, Lynn Cannon has identified a situation that would make an excellent referral to The Center. This referral is good because we must honor John's wishes and not assume he doesn't know because he cannot speak. Our process would make certain that we know what John wants.

In this particular situation we would need to determine:

1. What are the patient's desires? Patients "say" things by their actions, not only by their words. It is best if the patient could be there to indicate any desires. John might be trying to say, "I want to be allowed to die." He may want and need to be involved in order to indicate his wishes. Is he sufficiently competent at this point to take part in the decision, or is he too sick?
2. Who should be involved? Family, practitioners, and, if at all possible, the patient should be involved.
3. Where should the meeting take place - in the community or in the hospital?
4. In order for the conversation to take place in the hospital, permission must be obtained and the in-house ethics staff person should be involved.
5. Outside of the hospital, possible conversation settings might include the home, the parish or synagogue, or a community center. A comfortable and safe setting is very important. The home lends itself best to family gatherings like this. People need to feel "at home."
6. Much of The Center's work can be done by phone, but if it is necessary for staff, family, or practitioners to be present, then having a conversation place (or vice versa) is best.

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