No Mercy: Our Health-Care System Lacks Compassion Option
December 21, 2017
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.
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Yes, he should have had another option. Thanks for sharing your family’s experience. Thanks for starting this challenging, yet important conversation.
First of all, I am so sorry that your Dad, my cousin had to go through this! Such unnecessary suffering! He was such a kind & gentle man & didn’t deserve this, nor does anyone! Very well written article Frank & I agree with you & pray this option will become legal someday soon.
So sorry for you and your family. You’re right, these end of life choices should be up to the family, with all options available.
I am sorry you had to watch your dad suffer. It sounds like all the right things were done, including hospice care. In this day and age no person needs to suffer and I’m sorry his condition wasn’t managed in a way that he was made quiet, comfortable and given the ability to ease out of this world peacefully. My thoughts and prayers are with you and your family.
I’m so sorry, Frank, no one deserves this. We don’t consider this ok to put any other species through, and we all get there at some point. Thank you for writing what happened.
Perhaps he might ask you to remember a particularly good time you had with him, though he might also indeed hope that you might help ensure that no one else would need to go through this.
Physicians have the duty to ease suffering. Preserving life at the end, when death beckons from the bedside, is hubris.
I am sorry for the loss of your father, the way he experienced his final days and you guys having to experience of seeing him that way. What the heck happened with hospice. From all that I have heard, they could have advocated for him. A death from cancer, in a loving intelligent environment does not have to be excruciatingly painful. You are right to question.
I appreciate all the kind words from readers about my family’s loss, but I do want to set the record straight, since my column failed to do so, that hospice did everything it could. My family has no issue with the care hospice provided. These health-care officials can do only so much. They have a very difficult job. The point of my piece was that our health-care system needs one more level of care. — Frank Carini, ecoRI News editor
I am so sorry for your loss. My mother died two months ago, and while she suffered little major pain at the end, dementia and constant aches had robbed her of much quality of life the last six months. I too can’t know whether she might have chosen to leave on her own terms, but I know I would. Like my parents I have a DNR; there is also a bright-pink form which can detail end-of-life instructions, signed by one’s physician, which MUST be kept on file and in electronic records. I forget its name but it can be found on RI Dept. of Health website. How do we fight for this right? Is there an organization?
Beautiful. Moving. Thanks for writing this.
I am so sorry for your loss. I lost my mother to cancer in May, she also passed at home with hospice care. Unfortunately this wasn’t my first experience with a family member in hospice. I feel your pain for what you experienced and witnessed, it just doesn’t seem right what a person goes through at the end of life. I do feel my mother suffered at times but our hospice nurse reassured us that we were keeping her comfortable. I believe part of what appears to be suffering is the body trying to shut down, and going through whatever process it does…and the spirit leaving the body if you believe in that part. I hope this can possibly bring you some comfort, that maybe he wasn’t suffering as much as it appeared. Yet it’s impossible for us to know. Thank you for sharing your experience and your thoughts on this topic.
I agree wholeheartedly that there should be other options available, legally, for humans to turn to when they are faced with terminal illness or severe end-of-life suffering… especially at a time like now where "assisted suicide" is being redefined in the courts – due to unfortunate situations that are clearly more criminal than compassionate – but we shouldn’t throw the baby out with the bath water here. It’s important to bring awareness to the other side of the spectrum, and situations like your father’s, where, as you said, "another option" would open up the possibility for a less traumatic, dare I say more dignified, death. I’ve always found it strange to hear a lot of talk about the "right to life" but not to death. Perhaps starting an online petition through change.org or a similar site, that would propose legislature that introduces humane euthanasia as a legal option for those in end-of-life situations like terminal illness, might be a way to bring more mainstream attention to the issue and bring about change.
There is an organization that is helping to fight for the rights of individuals to make end-of-life decisions. This non-profit group is called Compassion and Choices https://www.compassionandchoices.org/ It is a great organization that helps organize the political battle so that the citizens of a state can vote to enact humane laws. Compassion and Choices is a patient advocacy group that supports aid in dying efforts.