Published on NJ.com by Lynn McVey.
My father, John Rhatigan, lived 92 years. The 6-foot-four Irishman and devout Catholic could spin a yarn and leave any audience mesmerized. He served in the Marines during World War II, worked at NY Telephone Company for 39 years, married, bought and paid off a modest suburban house in Paramus and raised three daughters. He wrote songs and played the harmonica with a local band. He lived a long and pretty darn happy life.
So when he learned he had just a few days left, that his heart was failing, my dad said he did not want the pacemaker his doctor suggested. We respected his wishes. I remember many decades earlier, in 1975, when Karen Ann Quinlan’s parents fought to remove the respirator keeping their severely brain damaged and comatose daughter alive. The dinner conversation at our table was clear: My parents did not want extraordinary means to keep them alive if there was no chance for a meaningful recovery. Soon after, they wrote their end-of-life instructions for us to carry out.
At the hospital, friends and family members came to say good-bye to my dad. We had watched our mother die of Alzheimer’s disease so we were happy my father was cognizant and aware, sharing his stories and planning his own funeral. The burial plot was picked out.
It was a beautiful and memorable weekend. My father was never in pain.
Then suddenly, and surprisingly, my father asked for the pacemaker to be inserted in his chest. He had the procedure, went to cardiac rehabilitation, and then came to live with me, where my daughter and I cared for him. Although I was thankful for the extra time and more tales of Coney Island and Brooklyn, one day I said, “Dad, why did you change your mind about the pacemaker?”
His response shocked and angered me. He told me the doctor whispered in his ear, “Hey, you tough marine. You are torturing your daughters. You should get the pacemaker.” He said he felt obligated, for our sake, to have the pacemaker. The doctor was dead wrong. We absolutely wanted to respect my father’s wishes.
I later confronted the doctor and he said — I remember this clearly — that doctors are trained to save lives. He said, “Until that changes, I will do whatever I can to save lives.”
Just three months after the pacemaker was inserted, on a Sunday morning, my father had a massive stroke. We took him to the hospital. He grabbed my hand, and, in garbled words and with frightened eyes, told me something about letting him go. He could not close his mouth. He could barely speak.
He died three days later on July 2, 2014. This was not how he wanted to go. I spent my career in health care — in radiology and as a hospital administrator — and yet even I could not guarantee that my own father would have the death that he wanted.
Recently, I shared my experiences at a member breakfast at the New Jersey Health Care Quality Institute. I believe we need to talk about how we can change the culture around end-of-life care, especially in New Jersey, where studies show many of us get some of the most intensive care in the last six months of life. In New Jersey, we see more specialists, get more tests, and are more likely than people in almost any other state to die in the ICU.
I believe we can change. At the breakfast, I heard about the institute’s Medicaid 2.0 Blueprint for the Future. One of the initiative’s 24 recommendations focuses on improving end-of-life care and calls on the state Medicaid program to encourage greater use of hospice and palliative care and to reimburse physicians for counseling patients about end-of-life wishes and recording those wishes. That makes sense.
At the New Jersey Innovation Institute, where I now work, we help physicians understand reforms that pay physicians for keeping people well and for obtaining quality outcomes — and not just for the number of tests, procedures and interventions they perform. Changing the culture around end-of-life care fits in with our efforts.
We need to have these difficult end-of-life conversations with our family members, and we must find health care providers who respect our wishes up until the very end. For me, sharing my story is the first step toward helping others have their wishes understood — and followed.
Lynn McVey is executive head of operations at New Jersey Innovation Institute.