, , , , , , ,

in hospice care, one of the most challenging parts is when we, the health care providers, face our own losses in life.  These losses remind all of us of the realness of death and dying.  One of my colleagues at the hospice I work for recently published a piece describing how she used her knowledge of caring for the dying to care for her son who was terminally ill. 

By Sharon Criscione, RN, BSN, CHPN
Monday June 4, 2012

I am a hospice nurse, and I say that proudly. I feel so strongly about the work hospice does for patients and families that I received my certification as a hospice and palliative care nurse in 2006.

Hospice works with a team approach (medical director, nurses, social worker, chaplain, aides and volunteers), providing patients and families the support and compassion they need to live every day to the fullest. People often associate hospice with dying, but hospice is about living — living every day we have with the best possible quality of life. I have explained this concept to so many patients and families, but I never expected someone to be telling me the same thing.

Two weeks after my son Alex graduated high school, he was diagnosed with a germ cell tumor. The diagnosis was even worse because the tumor did not start in the testicles, but in his mediastinum. It also had metastasized to his brain. As a nurse, I knew it was bad and we were in for a fight. As a mother, I wanted desperately to win.

My husband, my son Brian and I knew we would do whatever it took to help Alex. Our journey took us to the Cancer Institute of New Jersey, Memorial Sloan Kettering and Hackensack Medical Center. We drove from New Jersey to Indianapolis to meet with Lawrence Einhorn, MD, one of the physicians who cared for Lance Armstrong. Brian even became a stem cell donor for his brother. In the end, 17 months later, the cancer was too aggressive and we were told it was time for hospice.

In my practice, my patients typically are 80 to 90 years old. Alex was only 19. I thought I had to figure out how to separate being a mom from being a hospice nurse. Then I realized this wasn’t something I should do. I needed to make every day Alex had comfortable and symptom-free, but also to continue loving him like only a mom can.

We had a hospice nurse, Elaine, who understood my thinking and helped me fill this dual role. As a nurse, I managed Alex’s pain and anxiety and placed him on oxygen when needed. As his mom, I slept in his bed with him every night, never leaving him alone. My husband and I cared for him together, bathing him, feeding him and most important, just being with him. I am grateful that my knowledge as a hospice nurse allowed me to keep him comfortable.

The hospice philosophy involves living with the best quality of life until the end. A week before Alex died we went as a family to Nathan’s in Coney Island, Brooklyn. It was something we did at least once a year as a family. Alex was so happy that day. We packed up everything — oxygen, walker, wheelchair and pain medicine. Alex ate a chili bean hotdog that day. It is a memory I always will keep.

Alex was home with hospice care for exactly three weeks. He was surrounded by his family in the home in which he had grown up. He passed away Nov. 19, 2010, with his brother, father and me holding him in our arms. Elaine understood our need to be alone as a family and told us to call her when we were ready. I am grateful for her understanding.

Although life never will be the same, and even now the pain has not diminished, I find comfort knowing Alex died peacefully. During the three weeks he was home on hospice we were able to provide him with the best possible quality of life.

I was able to use my knowledge as a hospice nurse in this effort, but I also was able to do the most important thing: love him and be his mom. •

Sharon Criscione, RN, BSN, CHPN, is clinical director of The Martin and Edith Stein Hospice in Somerset, N.J.Write to editor@nurse.com or post a comment below