Bill, aka Billy as he preferred, was a young 24-year-old that had been diagnosed with Ewing’s Sarcoma, a painful type of bone cancer. Billy arrived in the inpatient unit at the hospice program in Texas.

Flashback about one week. I was asked by this hospice program to travel to Texas and present at each of their home hospice locations, inpatient units and at a physician’s dinner later that evening. After a successful trip, I arrived back home when the phone rang.

Hello Jason… This is the Executive Director of the hospice and I know you were just here, but I have our medical director and our nurse with us and we need your help. The primary nurse spoke up and said we have a patient named Billy who arrived in our inpatient unit over the weekend and we started him on hydromorphone 1mg/hr infusion with 1mg IV every 20 minutes for breakthrough pain. We’ve since had to increase his pain meds from 1mg/hr to 40mg/hr and he’s used 240mg of breakthrough in the last 24 hours. The medical director chimes in at this point saying they’re thinking palliative sedation with midazolam and we need a second opinion.

It is not uncommon before palliative sedation is started to request an ethics consult or get a second opinion from a colleague. I was officially the second opinion, which to be honest is perfectly fine as I have been the second opinion or expert witness for many patient care activities over the years.

I preceded to ask some questions about the pain, more specifics about the Ewing’s Sarcoma and other treatments that had been tried. After conversing for a bit, we concluded that it would be best to try some other options before palliative sedation and monitor for the next 24-72hrs. We started methadone, we began to slowly decrease the hydromorphone, started dexamethasone and added chlorpromazine strategically since we discovered he was having rectal spasms that were contributing to a significant amount of his pain. Chlorpromazine is a hospice clinical pearl for rectal tenesmus. Over the next 72 hours he improved greatly and was able to spend quality time with his family. At that point Billy was stable so I ended my daily check-in and let them know I was available should the need arise.

A year had past and the hospice had asked me to visit them again for some educational training. Upon arriving at the inpatient unit, one of the nurses came out to meet me and as we chatted, she asked did you ever hear what happened with Billy? I responded I had not. She proceeded to tell me he passed away peacefully. I was sad to hear he had passed, but happy it was peaceful.  She stopped mid-sentence and said, “oh you don’t know the other half”. I paused and listened very carefully. The nurse informed me that one week after Billy had passed, his mother and father came to the hospice and requested a meeting with the leadership. The mother preceded to let the hospice know that Billy had a brother who was two years younger. Billy’s brother also had the genetic abnormality that causes Ewing’s Sarcoma and had begun to develop the disease. They went on to say that when the hospice couldn’t get Billy’s pain under control, they were really struggling emotionally and went home every night thinking their son would die in pain and his brother would die in pain in a couple of years. The mother said, “you don’t know the gift you gave us when Billy died peacefully, as we know our son is in a better place and we know his brother, our other son, will also be able to die peacefully”.

I wanted to share this case as every so often when people ask, are you happy working in hospice, I pause and remember Billy- remembering the amazing journey we all play in the lives of people every day.