I had a  particularly challenging shift this last week.  So much so that I can now answer that always present question “Have you experienced an ethical dilemma?” on those pesky nursing surveys with a strong “Yes.”

I cared for an end-stage patient who had battled cancer for almost 20 years and unfortunately suffered from a recent stroke that left him aphasic.  He is a DNR and on comfort measures.  My problem?  The family’s idea of comfort.The family refused anything except Vicodin for pain.  They didn’t want him too sedated.  Fine, but their only apparent option was to leave him restless and visibly in pain?

The patient only had some semblance of peace when the family left and/or slept.  Every other time they were hovering around, picking at his nose, demanding q2h oral care, questioning the position of a leg, moving him,etc.

I consulted our palliative care nurse.  She is an excellent resource and passionate about her work with families and patients.  Even she came out of that room shaking her head.  They were in complete denial.  Specifically one daughter who took control every time she arrived.  Any bit of progress in patient care and in the wife’s processing of the situation got set back. She even went so far as to get PT/OT consults and CPT ordered.  The terminal congestion had already been explained.  Yet she wanted more.  When the doctor suggested cutting off the IV fluids as he was already receiving continuous NGT feedings and getting wetter and more edematous – she refused.  The wife let her completely take over.

I really felt for this wife.  Whenever we were finally alone, she and I were able to talk.  We spoke about the IV fluids and feedings.  We went over the signs of pain in a person unable to speak.  I explained that when those signs persisted after the pain pill was administered, it was appropriate to try a stronger medicine.  I reassured her that we would start out with smaller doses and increase them up to the point that they kept him comfortable.  She said to me at one point, “They keep telling me that it’s my decision, but how I am supposed to decide?”

That was the kicker.  The burden of decision was too much for her.   He had always come through before.  This time was different, and she was unprepared for it.

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This situation broke my heart and motivated me to look at advance directives to share with my family this Christmas. I don’t anticipate such a situation with my family as we are practical and reasonable to a fault.  However, you never know. There are so many possible outcomes that may leave your family unsure of your wishes.  Aging With Dignity has a wonderful, easy-to-understand document called “Five Wishes.”  It meets the legal requirements in 42 states.  If you live in one of the states that does not recognize it, it can still be helpful and kept along with your legal directive.

The important thing is that your wishes are made known and that burden is lifted from your loved ones.  They can be at peace knowing that it is your decision, and they are simply helping you carry out your last wishes.