Below is the short speech I gave at UPenn’s class DOC 101. It was a class for med students to share our experiences about end of life care and the hospice experience.
In May 2012 my husband of 7 years and father of our then 2 and 4 years old children passed away from an ultra rare cancer. Despite the grim diagnosis and outlook, he fought this aggressive cancer for 11 painful months. He stubbornly insisted on receiving experimental treatment until 3 days before he died.
Even though we had seen many different oncologists in many different states, no one had ever tackled the topic of hospice. The term palliative care was thrown at us once and also that there was nothing else we could do to fight this kind of cancer. Neither were we ready to throw in the towel just then or did we even know what palliative care was. It was not until we met Dr. Stephen Keefe here at UPenn that hospice was even mentioned and explained to us. Dr. Keefe tried to break the ice more than three times. Each time my husband and I dismissed the mere idea of it. Because hospice meant to us that he would have to die.
Now, even though we had his advance directive, last will and living will in place, he and I both hoped for a miracle until almost the last minute. Even though we both knew intellectually that this battle could not be won, we were not ready to admit it. We had two small children and it was my husband’s worst nightmare having to leave the kids and me behind.
During his last hospitalization due to the ever increasing water load in his body, we were almost harassed daily with hospice admission paper work. At that point, Ken must have dragged around at least 30 lbs of excess water, which was mainly contained in his legs and torso… I remember the skin on his legs literally tearing apart in front of my eyes. Even though I understood why a hoard of 6 doctors entered his room and kept insisting at least twice a day, why he should be on hospice care…their method failed and he insisted on discharge to receive treatment. He received Torisel for about 5 or 6 weeks until finally that Monday morning.
That morning, after I had taken the kids to day care, I returned home and knew something was different. He was no longer able to walk , and therefore he had to sleep in the living room on the couch…. and I will never forget the gurgling sound of his lungs while he tried to breathe. He woke up that morning, looked at me and said that he could no longer go on like this. I agreed whole-heartedly with him and it took one phone call to Dr. Keefe’s office: home hospice was fully set up and everything was delivered to our house within 2 hours!! The Wisahohicken hospice truly made the hospice experience easier than expected. Everything and everyone was almost instantly available and their service was outstanding. Being on home hospice enabled us to have family visit at all times. And the amount of family and friends that showed up during those last three days was incredible.
Ken was coherent during the first two days and we had some time to say the last things that needed to be said. I was able to tell our kids that daddy was getting ready to live with god and angels very soon. They were able to sit with him on his bed for a little bit at a time. Every minute that we spent was spent together.
On the third day, we had the most company. Ken’s boss from DC and his best friends made it up from Virginia to spend the day with him. Unfortunately, they saw him at his worst. He was no longer coherent and was struggling to pass. That evening, our kids kissed him one last time good-night and he died in the arms of his brother and me around 10 pm.
While my husband died the death he was afraid of dying and that I would not wish upon anyone, if it would not have been for hospice, there would not have been any closure.
During his entire cancer journey, he was afraid to leave the kids and me behind and he admitted in the end that he felt guilty for leaving us. I tried to take that guilt from him during those last days. I hope I succeeded.
Life is short and while everyone prays for a long life or a miracle in the end, we have to face mortality. I believe modern medicine has one serious flaw: the flaw that we think we can prolong life and push mortality away. Sadly, among those many oncologists that we encountered only one had the courage to talk to us about hospice – and not just once, he was very persistent – but still let us make the decision.
If you take anything away from this here today, let it be the plea, that when you become doctors to always bear in mind everyone will die. And that suffering a terminal illness (no matter how horrible), enables us to prepare and plan ahead. Even though the cancer road was long and painful, I still, to this day, value the single fact that we had time to come to terms with love, life and family.
Please remind your patients that death is part of life and that certain institutions – like hospice – can greatly help find closure and peace in the end.