My Dad died May 1st. He was 90 years old and failing, but his death was sudden and relatively quick on that Tuesday. It has taken me the month to be able to start to blog and I had to start here. Dad lived a good long life, was a loving husband to Mom for 67 years , a loving father to me and my sister, a hard worker, a great provider and was proud of and grateful for his life. He had achieved firsts in his career as a funeral director and had won many awards for his community and church contributions. He beat the odds by surviving and living with metastatic prostate cancer for 30 years. In the past decade he was declining due to progressive alzheimers that had been worsened by a stroke he suffered last year. Despite some speech problems Dad was conversive , recognized us, would read the newspaper, he could still dress and feed himself, and was able to walk with a walker. He and Mom had lived in an Assisted Living for the past year and a half. Dad had a POLST (Practitioner Order For Life Sustaining Treatment) for years with his wish for no CPR (no resuscitation or ventilator). I was his designated health care power of attorney. Recently as Dad declined and in discussion with my mother and sister his POLST had been updated to reflect less aggressive hospital care. Dad was not always great even as a young man at describing symptoms. So on May 1st after a short walk with Mom and me, he said he was nauseous and for the first time ever started to rub his chest and clearly tell us that he had chest pain and he thought he was having a heart attack and wanted to go to the hospital. We called 911. Dad’s POLST had never stated do not hospitalize. This is where things got complicated. Of course the EMTs have very specific protocols for handling heart attacks. The first EKG done by the EMTs did not show an acute heart attack so I got to choose to send him to his usual hospital where his doctors were. Dad was conscious but not doing well, he had low blood pressure, was sweaty, still nauseous and having chest pain. First thing in the ER I told every one was that he had a POLST and his wishes were not to be resuscitated, no CPR or ventilator, and the POLST was there with his paper work. Next the doctors were suggesting a CT scan of his chest. I refused because if we found his aneurysm worse he could not tolerate surgery. The next EKG showed an acute heart attack and they wanted to transfer him to another hospital where he could get a cardiac catheterization and possible stent. I told them he was 90 and reminded them of all of his medical problems, how he would not tolerate transfer or cath, and would have no quality of life if he survived all of that. Quality of life was important to Dad. They kept pushing about transfer and cath and finally my Mom said I yelled out “absolutely not he has a POLST.” During this brief discussion with the doctors my Dad went in and out of consciousness and it became clear to me he was dying and soon. We as a family did not want to leave his side and we wanted him comfortable. So he received comfort medications and we were then given the option of admitting him to the hospital or to hospice. We (my Mom , sister, and myself) chose hospice and requested they turn off the monitors in the ER as the alarms were very distressing to us as Dad’s heart rate fell. Three options for hospice were available, the inpatient unit in the hospital, a near by inpatient hospice, or return to the AL. The return to the Assisted Living I knew was an option but Dad was too medically unstable by then to transfer so we chose the inpatient hospice unit in the hospital. The hospice nurse and social worker were wonderful , helpful, and listened. Dad went quickly up to the hospice unit and with us with him. Dad was in the hospice unit for hours and eventually needed a morphine drip to stay comfortable. My Mom, sister and her husband, and I stayed with Dad. He never regained consciousness but we knew by his response that he could hear us. We kissed him and said our goodbyes. I held one hand, my sister the other, and with Mom by his side, we witnessed him take his last breath.
I have taken care of many people on hospice and have seen many die in my career. Going through this and watching my Dad die was traumatic and so much more personal. We thought he would linger for a year or more declining with alzheimers. His sudden heart attack and death took us by surprise even at his 90 years of age. We chose to go to the ER because Dad requested to go, to clarify what was medically going on with Dad, and to get him comfortable. Mom felt Dad died peacefully in the hospice and “just ended drifting away”. For Dad and Mom it turned out best he died in the hospice unit and not in his Assisted Living apartment.
For me the whole experience with the ER was more traumatic than it needed to be. They knew I was a doctor, that Dad had a POLST (of which I am not sure any of the doctors read), that he was 90 years old had alzheimers and yet they continued to push for the most aggressive treatment and repeatedly stated that it was his only chance for survival. I knew this treatment would be futile and torture for my Dad. We did not want Dad to die alone in an ambulance or on a cold cath table. What if like most people entering the ER I did not have the medical knowledge to help me make these decisions and stick to his wishes on the POLST? Even Dad helped make it clear as he continued to go in and out of consciousness. Why didn’t the doctor consider and offer hospice earlier in this process especially in light of his POLST and the fact the hospice unit was upstairs? ( In being emotionally overwhelmed, I did not remember the hospice unit was upstairs). Later after the doctors had abruptly left, the kind and patient nurse said to me that we had made the right decision. I felt the decision from the beginning should have been supported for less aggressive care and comfort once we knew what his diagnosis and prognosis were. I should not have been pushed to fight for the right for my Dad to die naturally, with dignity, with us present, and him in comfort. The medical system in the US and we as doctors still need a lot of education and changes when it come to end of life care. I now have been on both ends of this spectrum, it should be easier!