Thinking of end-of-life care issues went from an abstract thought to very real, urgent concerns for me and my husband, Jim, when he was diagnosed with stage 4 terminal melanoma and bowel tumors in August of 2015. The cancer had already spread to his hip and required hip replacement surgery. Fortunately, he recovered well from that surgery and the immunotherapy treatments he received worked for a couple of months, but by the beginning of 2016 they had stopped working.
Doctors recommended Jim try surgery to manage his cancer, however surgery failed and then chemotherapy was offered. Jim had to make the hard decision of receiving chemotherapy that would have harsh side effects or stop all treatment. He decided to discontinue all treatments and focus on his quality of life.
Prior to Jim’s illness, we had had conversations about medical aid in dying and we both felt it was an important, compassionate end-of-life care option, not imagining we would one day potentially need the option for ourselves. We, however, were never willing to consider moving out of state to become eligible to use such laws. Moving would have meant being away from friends and family, and that would have been a terrible hardship on us both.
Knowing that we were unwilling to move to access medical aid in dying, Jim opted for in-home hospice care once he decided not to pursue further treatment for his cancer. We were promised comfort care at home; and in our minds, hospice would be able to relieve Jim’s pain and symptoms.
Sadly, even though all sources of pain that Jim experienced were predicted, his pain could not be managed at home, so we were sent back to the hospital by ambulance, for pain management. Once his pain was under control after re-hospitalization, we chose to go to a hospice facility rather than receive home hospice care because we were reassured that all the medications Jim might need to keep him comfortable would be on site, for immediate administration as needed.
Jim’s primary concern at the end of his life was that he would be kept comfortable, which he communicated to me and outlined in his POLST. He feared being in pain in his last weeks. Hospice failed to provide immediate comfort care. Jim was grimacing, moaning, saying, “Help me.” He did not receive comfort care.
I am left with anger, remorse, and sadness for what Jim went through and my feeling of failure that I couldn’t make sure he had the comfort care which had been promised to him. It was horrific watching the one I love suffer.
There is a need for better end-of-life care, as well as legislation for medical aid in dying in Minnesota. I ask legislators to imagine someone that they love very deeply suffering in the manner my husband did. Such legislation would provide another palliative option and could prevent prolonged, painful deaths like my husband’s.