When Dr. Moon, a pain management specialist, told me about Dad’s wish, it was not the first time I had heard it. A few days earlier, Mom had told me that Dad wanted to be transferred from the hospital to hospice. I did not quite understand what hospice meant at the time. Between that conversation with Mom and the one with Dr. Moon, I had watched Dad take about twenty steps with the support of a walker and the assistance of a physical therapist. After seeing him come out of critical condition, I took those steps as a sign of recovery. So I was surprised when Dr. Moon told me that Dad had expressed his wish to end all medical treatments and go peacefully.
I had been struggling with the continuation of his medical treatment. Three days after I wrote Will Love Give Us the Courage to Let Our Dad Go?, Dad passed away peacefully, as though he had simply fallen asleep, with a morphine drip erasing the pain that had once dominated him. He was eighty years old and had spent the last six years of his life battling an autoimmune disease that shrank his body by half and, at moments, took dignity from a proud man.
Our family did not have a palliative care plan for him. My brother, who was Dad’s medical advocate, could not accept that it was time for us to let Dad go. He understood that it was the best thing we could do for him, but he could not accept it emotionally. Mom understood too, but she could not bring herself to do it. So I was left to manage Dad’s last days. I am the pragmatic one in the family.
The day before he passed away, I was at the hospital at 5:30 a.m. Did you know that some doctors start making rounds at 6 a.m.? I wanted to be there to meet every doctor and understand every treatment being offered to, and declined by, Dad. By then, he was irritated. He was suspicious that we would force more medical treatment on him. He refused to let a nurse check on him until I explained that the nurse had to check on him, and that refusing care altogether could trigger a discharge from the hospital before hospice was in place. When he immediately calmed down and let the nurse come to his bedside, I knew he was coherent. I knew he understood the consequences of his decision.
As each doctor came and went, as Dad refused treatments, as he allowed nurses and phlebotomists to do their work only after I explained that these were not the interventions he was trying to refuse, I realized there was nothing left for me to do but ask for all acute medical treatment to end and make sure he received the best comfort care available. After the palliative care consult, I asked Dad one more time. He was certain.
When the hospice admitting nurse explained the process to me, I was fine. My emotions detached, as though I were sitting in a business meeting while someone explained something that was never going to happen. My Dad was not going to die. I had been told numerous times by doctors that he would not live beyond a day, perhaps two. I understood that. I even found my brother, who kept insisting that Dad could easily live another week or more, irritating. But my heart kept believing Dad would live, even as my brain believed the doctors.
As I signed one document after another, from the service agreement to the insurance forms, I was fine. It was something I had to do. It had nothing to do with what I wanted. It had everything to do with abiding by Dad’s wishes and ensuring the best comfort care. I had been advised that the best hospice care was in-hospital hospice care, so I took comfort in knowing that I was getting him the best hospice care available. He did not have to be transferred to a hospice facility. He could remain at the hospital and receive comfort care there.
It was not until I reached the last document that I broke. It was a one-page document. While all the others had been signed electronically, this one was a hard copy. It began with a do-not-resuscitate order, followed by a list of interventions being declined, including feeding tubes. There would be no further medical intervention to keep Dad alive, only care to keep him comfortable. It was the first time I became upset. I cried as I signed the form and left the room. I power-walked to Dad’s hospital room, crying. I remember telling him what I had done and that he had to be peaceful. That was what he could do for me.
I was angry. It was not sadness. I was angry that the only thing I could do for him was give up on him. I signed my name declining medical interventions that could possibly have kept Dad alive for a few more hours, days, or weeks. That night, Dad left further wishes, a verbal will, surrounded by his wife of more than fifty-five years, his children, and his grandchildren. I spent the night at the hospital, beside his bed. The next morning, he asked for Mom. She rushed over. They said their goodbyes. When she stepped away, his breathing became infrequent. He became unresponsive and lost consciousness. He took his last breath with Mom and me by his side.
As I watched Dad drift toward his last breath, I cried. The helplessness that had been anger the day before had become sadness. I apologized to him that all I could do for him was let him go. The head nurse called the time of death at 11:55 a.m., and I remained by his side until they took him to the mortuary.
As the days pass, I have my good and bad days. The pain of agreeing to cease acute treatment in exchange for comfort care broke my heart. I wanted to scream, “Please help him,” as he drifted toward death, but I could not because of what I had agreed to. That destroyed me. I know Dad went peacefully, with the best care. I know he had the chance to say goodbye to those he loved. I know he took his last breath with his family beside him. Yet I remain broken, frozen with doubt and what-ifs. Was my last gift to Dad the right gift?
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