The way I see it: Regulation in health care is no substitute for compassion

My father died in late January at age 87. He was lucky that he enjoyed a mostly happy life. He was unlucky in the way he died. Dad had been struggling with heart failure since his second heart attack in his 70s. He was admitted to a hospital near his home in Southern California last October with so much fluid in his lower limbs that he was unable to stand. The doctors adjusted his medications so that the excess fluids drained in a matter of days. From my home in Houston, I felt comforted speaking by phone to the physician in charge. She seemed warm and knowledgeable, a woman who was well-prepared to look out for the best interests of my father.

Vivian Ho

I was confident that the financial penalties imposed on hospitals by Medicare for excess readmission rates within 30 days of discharge for heart failure patients would motivate the hospital to provide clear instructions to Dad on what to watch for and how to adjust his medications when he was ready to go home. Instead, Dad called to tell me how irritated he was with the three different doctors who came to see him on the last day of his stay, all speaking too quickly about completely different issues. He ended up with a sheath of papers filled with instructions that he was just too exhausted to read. My brother emailed copies to me, and I was able to wade through them, call Dad’s cardiologist for clarification, then give him a manageable list of instructions to follow.

When I visited my parents over the Christmas holidays, Dad was anxious and worn. It was clear that he had lost much of his energy. Dad made his way slowly around the house, often dozing off in a chair throughout the day. Nevertheless, after I returned to Houston several days later, I was caught by surprise when my brother called to tell me Dad was taken by ambulance to the hospital because my mother was unable to wake him in the morning. Dad had signed a do-not-resuscitate (DNR) order years ago, but someone inserted a breathing tube down his throat that morning. A standard DNR does not formally cover breathing tubes, but my mother knew he wouldn’t have wanted one. When my father woke the next day, he let my family know that it was a mistake to have taken him to the hospital. He would have wanted to die at home in his sleep.

This time, my dad shared a room with a terminally ill cancer patient, who insisted that the nurses turn the temperature down several degrees because he was too hot. With his heart condition, the drop in temperature made my father unbearably cold. My mom had to fetch a knitted hat from home to keep my dad warm. She would come into Dad’s hospital room in the morning to find a tray of food lying several feet from the bed, well out of his reach. No one at the hospital had tried to help my father eat his meals. Instead, a doctor mentioned that the MRI that was performed to rule out a stroke when Dad was first admitted had revealed a spot on my father’s gallbladder. Dad was alarmed that the doctor was thinking of performing surgery on him.

In the midst of this misery, Dad called me to say his goodbyes over the phone. He told me how much he loved me, and how much he wanted me, my husband and son to go on living a joyful and fulfilling life. He was worried about my mom’s future, and we spent much time covering financial matters before he was reassured she would be OK. My mom told me that Dad had asked the doctor in the hospital for help to end his life. He made the same request to his cardiologist when she came to see him. Even though California is a right-to-die state, both doctors refused him.

At that point, my dad asked to go home. Someone at the hospital, I’m not sure who, was talking about sending him to a rehabilitation hospital. That made my dad extremely upset. I spoke to his doctor over the phone and asked that she send my dad home with hospice care. Fortunately, this request was honored. Dad came home, went to bed, and ate one final, good breakfast the next morning. Then he returned to bed — and refused to eat another meal. My father’s body was failing him. He was tired of struggling to walk and fighting for every breath. Because the doctors refused to help him end his life, he had to do it himself.

My mother was heartbroken, but she was helpless to change my dad’s mind. The hospice delivered a special bed and other equipment to keep Dad comfortable. My mom and brother stayed by my dad’s side, trying to give him a teaspoon of food or water whenever he woke. My mother fastened a bell to Dad’s bed, so she could get up to help him if he made any movement in the middle of the night. He pulled out the bell’s clapper. As the days passed, my dad faded even further. He stopped speaking. Mom could only tell if he was awake by the faint flutter of his eyelids. One afternoon she came to check on him, and he was no longer breathing.

The U.S. health care system saved my dad after two heart attacks, yet it failed him miserably at the end of life. I spend my work days scrutinizing health care statistics, and I’ve been encouraged by the reductions in hospital readmissions and other suggestions that the quality of care at U.S. hospitals is slowly improving. But the regulations designed to encourage better care weren’t enough to help my dad. We can’t regulate compassion. We can’t regulate a nurse to help an elderly patient stay warm in a frigid room or feed a patient when he’s unable to eat on his own. The regulations don’t stop a doctor from trying to perform gallbladder surgery on a patient who is dying for completely different reasons and needs comfort, not a scalpel. And the regulations don’t force a physician to help a patient end his life when he is suffering terribly. We can’t regulate health care practitioners to treat patients as they would their own family members. But since we’re paying our providers so much money, perhaps they could show a bit more empathy.

Vivian Ho holds the Baker Institute Chair in Health Economics at Rice University’s Baker Institute for Public Policy. She is also a professor of medicine at Baylor College of Medicine.

This commentary first appeared in The Hill here.