A Cry for Help: How to Be the Best Advocates Possible for our Patients

I heard her yelling as I walked down the hall of the Neuro ICU toward her room. As her Parish Nurse, I had visited the 90 year old Nancy on multiple occasions in her home, then in the assisted living facility she went to before hearing that she was hospitalized with an unknown infection and was not doing well.

I put on the protective isolation garb and slipped through the sliding glass door only to hear magnified the screams and yells that were already audible down the hall. Nancy's two nieces stood by, one of either side of the bed, trying to calm their aunt who appeared to have acute confusion probably associated with her current condition -later diagnosed as a UTI. As soon as Nancy saw me, she reached out her mittened hand-"Help me! You've just got to help me get these off! Listen, you know me, you know that I don't like to be tied down. Now, if you want to, you CAN help me. Just do it. I need you."

Gulp. Even knowing that the mittens were on for a reason, I had to dig deep to respond in any sort of way that might possibly be helpful. I tried to use a soothing manner, a calm voice, reassuring her that I would look into it and see what we could do. My lack of immediate action only seemed to inflame the issue further and her screams reached a new crescendo of volume. Eventually, finding that I was not being helpful at all, quite possibly the opposite, I retreated to the hall, out of the line of her sight and motioned for one of the nieces to join me in the hall.

We talked things over and I discovered that this acute episode had been going on for almost 16 hours, enough to wear them both out. As we talked, I looked for answers to pertinent questions:

1. What was the plan?
2. How far along into the plan were we?
3. What had Nancy expressed as her wishes?
4. What could we do to help make Nancy more comfortable whether in full treatment mode or not?

Nancy's nurse happened along, and we began to discuss the plan together. As Nancy's long term advocate (she only had these nieces and no other family), the niece expressed again that Nancy had repeatedly stated her desire to "die peacefully," as recently as 2 days before this episode. The nurse was able to clarify that things did not appear to be going well and that she showed some signs of organ failure. We went on to ask the nurse to page the doctor so that everyone could understand the plan and get a clearer picture of the way forward. In the end, the nieces decided to make her a DNR and they requested sedation and pain medication.

As advocates for our patients, it is hard sometimes to determine the way forward. Whether we are the parish nurses, case managers, facility nurses or ICU floor nurses, as professionals we all want to do our very best for our patients. Sometimes, in this day and age of having to float to cover the shifts, and having EMRs that fail to tell us the whole story, we flounder and find ourselves unsure how to proceed because we simply do not have enough of the background story to know what the patient and the family would want.

How do we get around this current state of affairs? How can we help each other be the best advocates possible for our patients?

1. Listen- When families come to visit, ask a few well-placed questions about the patient, where they lived prior to this stay and what they mentation level was. Families often think that nurses can somehow magically tell that their loved one has been suffering from Alzheimer's for the past couple of years and is declining rapidly. They often assume that we know more than we do, thinking that all those forms they filled out previously have made their way into our hands. Sadly, we know that communication is one of our biggest current problems in medicine -a complete irony since we spend a great deal of our time documenting and, in theory, communicating.
2. Advance Directives-We always ask if people have one, but we less often check to see what it says. "Even though advance directives have been promoted by health professionals for nearly 50 years, only about a third of U.S. adults have them, according to a recent study ." (Many Avoid End-Of-Life Care Planning, Study Finds) It's helpful, for example, to know if the patient who has had a stroke is adamantly opposed to feeding tubes. If we know that, we are looking at a different type of care going forward. Of course, Advance Directives can be changed by the patient and care proxy in real time, but establishing the groundwork of what they say initially can help everyone involved to stand on firmer footing.
3. Anticipate problems- As professional nurses, we know how to look ahead at what might be coming down the care pathway. We might see the beginning of an attack of acute anxiety in an inpatient such as Nancy, at which point we could consider asking the family or facility if this has been a problem in the past or is it new onset. As we give them instructions for care after discharge we look ahead at what might come up and what they can do to address problems: practical suggestions that address particular issues that are likely to surface, e.g. UTI after Foley inpatient, weight gain with CHF, insomnia with Prednisone, etc.

After those days in ICU, as her condition continued to deteriorate, Nancy was transferred to inpatient hospice care and died peacefully about a week later. Although I felt bad that she suffered so much during her illness, I was also grateful to be able to advocate for her in a meaningful way.

What are some practical ways that you advocate for your patients?