No Mercy: Our Health-Care System Lacks Compassion Option

By FRANK CARINI

For 36 agonizing hours I watched my Dad die. The only movement from his body, which had shriveled to a shell of its former self, was caused by his gruesome struggle to breathe. The memory of his gasping for air still keeps me up at night.

His final few days — at his best he was able to briefly open his bleary eyes — didn’t have to end with such pain. His long last hours prey even more so upon my mother and brother. While we circled his dying body, paced in and out of the bedroom, or sat bedside, we kept repeating the same question, in various forms: Why is such suffering tolerated?

When he was diagnosed with stage 4 lung cancer in June — he had smoked briefly during his late teens and early 20s, before I was born, but he also had spent 45 years as a machinist working in machine shops — his Dana-Farber oncologist explained there was no cure. He said he and we should focus on quality-of-life measures. There was little that could be done, except prepare my Dad for the inevitable in the most comfortable way possible. We did so, until his final moments.

In an attempt to prolong his life, my father gave immunotherapy a chance. While it’s less debilitating than chemotherapy, it sucked the remaining life out of him. It also did nothing to slow the cancer’s advancement. He also suffered through two rounds of chemo before saying enough. Quality of life.

The U.S. health-care system offers up every tool possible, except one: compassion. I’m not talking about the many doctors, nurses, and health professionals who treated my Dad with great care and much empathy. His cancer-ward nurse, a delightful, kind-hearted and firm woman, always brought a wide smile to my father’s face, even after a series of “tiny” strokes had weakened his facial muscles and robbed him of his speech.

I’m referring to euthanasia, right to die, mercy killing, assisted suicide, dignified dying, physician aid in dying, or whatever we call it that allows veterinarians to humanely end the suffering of dogs, cats, and horses, and their families.

My father had signed a do not resuscitate (DNR) consent order, and wanted no part of a hospital at the end. He died Dec. 7 at age 72 under hospice care, in the Massachusetts home where he had lived and loved for the past 49 years. I can’t say for sure if he would have signed off on assisted dying, but our human health-care system, in most places, doesn’t even allow that option. I know where my mother, a retired nurse, and I stand on the issue: freedom of choice; dignity in death; less pain, both physical and emotional.

He was given morphine to dull the pain and help his labored breathing. He was prescribed Ativan to calm him. What he wasn’t given was a choice.

Euthanasia is illegal in most of the United States and in much of the world. In fact, the various words and phrases used to describe this kind of compassion have cumbersome definitions and are hidden in red tape.

For example, euthanasia — defined as the painless killing of a patient suffering from an incurable and painful disease or in an irreversible coma — and physician-assisted suicide — the voluntary termination of one’s own life by administration of a lethal substance with the direct or indirect assistance of a physician — can be legally practiced in Belgium, Canada, Colombia, Luxembourg, and the Netherlands. Physician-assisted suicide, excluding euthanasia, is legal in five states — Oregon, Washington, Montana, Vermont, and California — and Switzerland.

More than 70 percent of euthanasia cases studied between 1947 and 2016 involved patients with cancer, and pain wasn’t the primary motivation for wanting to die with dignity.

Support for mercy killing in the United States increased from 37 percent in 1947 to 53 percent in the early 1970s and leveled off around 1990, with two-thirds of the U.S. population supporting the practice, according to the same 2016 study. The study also found that the humane practice isn’t abused.

Yet, the idea is more often politicized than thoughtfully debated. It’s an individual choice that is being made by career politicians. People should have the option to die at a time of their choosing, when clearly outlined circumstances are met.

Opponents contend that doctors have a moral responsibility to keep their patients alive. They do, until a point of no return is reached and an adult decision exercised. They argue the ridiculous by trotting out the “slippery slope” cliche, saying euthanasia will lead to murder. They claim legalizing euthanasia will unfairly target the poor and disabled, and create incentives for insurance companies to terminate lives to save money. Poor and disabled people are just as capable of making end-of-life decisions, and insurance companies can’t pull the plug without consent. That would be murder.

The quality of my father’s last hours were unnecessarily awful for both him and those who loved him. He should have had one more health-care option. He deserved it.

Frank Carini is the ecoRI News editor.