Family Education at End of Life

[kendall94]

Recently I made the decision to make a large shift in my nursing specialty. After working in a neuroscience ICU for a little over a year I decided to make the transition into hospice nursing.

I was feeling conflicted working in an intensive care unit at a level one trauma center. A lot of our cases were the most extreme of their circumstances and unfortunately families would continue intensive intervention even after there was no hope for a meaningful recovery. Many of these patients ended up going to long-term care facilities without the ability to communicate or participate in their activities of daily living. While we had many success stories of people overcoming odds and walking out of our ICU with full function restored, it was the stories of those who did not that really stuck with me.

At my time in the intensive care unit, I was able to be assigned to certain cases where families did ultimately end up choosing palliative care after trying many interventions. I remember when this choice was made how I felt a feeling of relief for my patient. Something else that I noticed was how little people know about death and the dying process. I experienced many families with anxiety, fear, and questions of their faith. Educating and supporting families through this time became something I was very passionate about. 

This past January I was able to have the honor of being my grandfather’s hospice nurse. He got sick, went into the hospital and was discharged as a home health patient. I drove up that day to assist my grandmother and getting him settled. When I arrived, I took one look at him and I knew that this was not a home health situation but an end-of-life care need. I called his primary care physician and discussed with her what I was seeing, she understood and put in the orders as well as contact at a hospice agency to come out and see him. The next day there was a large snowstorm making it hard for anyone to get to the top of the mountain they live on. I ended up staying for a week caring for him and being able to see what providing comfort care means to a family and a loved one. Ultimately that nurse never was able to show up because he passed before the snow had melted. While, this experience not only introduced me in a hospice care it showed me firsthand how little people know about death and dying. Most of my time during this process was spent educating my mom, aunt, grandmother, and cousins.

When I return to the ICU I carried this experience with me and quickly saw my grandmother and other family members and my patients families who are grieving and looking for answers. Talking to my family about death has made me much more comfortable doing education on this topic. It shocked me how little families knew about comfort, end of life, medication uses, and the natural way the body passes. 

Through switching to hospice care I’ve had the ability to continue this type of education. I think it’s incredibly important for nurses to educate patient’s families about this topic without it seeming like something we need to tiptoe around. The earlier end of life care is discussed the easier it is for a loved one when this process begins to start. While I found that all patients pass in their own time and on their own terms, there are similarities and some things that are the exact same even that my patients experience. Families often are frightened when loved ones begin talking about passed loved ones they are seeing, even though this is so common it’s written in textbooks, as are hallucinations and talking about “going up” while a patient reaches out. 

I’ve learned so much doing hospice care, but what I have learned the most is that families benefit greatly from having comprehensive education about the dying process. This has made me passionate about spreading awareness to other nurses on educating families early as well .

[amoLucia]

Your post so clearly bepeaks your discovery & introspection into the field of hospice/palliative care. Sounds like you may have found your 'niche' early. It's needs are unique, but rewarding.

Welcome to AN.

And wishing you all the best.