Editor’s note: We know that focusing on helping our families and supporting our communities in the effort to prevent the spread of the coronavirus is of the utmost importance. During this time, we will continue to share with you, dear readers, our blogs and other updates about Medical Aid in Dying in California and throughout the country. We hope that calling your attention to Diane Rehm’s book, reflecting as always her balanced and deeply thoughtful discussion, would help keep you grounded during this unprecedented series of world events.
Support for Medical Aid in Dying (MAID) is growing as more and more states pass laws to allow those who are dying to choose to end their pain and suffering. The passage of these laws has sparked debates and conversations across our nation because this topic, like our ongoing arguments about abortion rights or the death penalty, is met with intense controversy and opposition.
Diane Rehm, acclaimed NPR radio host, tackles the conflicts and challenges arising from this law in her most recent book When My Time Comes: Conversations About Whether Those Who Are Dying Should Have the Right to Determine When Life Should End. In her usual even-toned and well-balanced style, Rehm takes a deep dive into the personal stories and opinions that come together to make this law so controversial.
Rehm investigates this subject with knowledge based on personal experience. She understood the value of a person having the right to die way back in 1955, when her own 49-year-old mother endured unimaginable pain and suffering, combined with endless medical procedures, only to prolong the agony and trauma of a death that she knew was inevitable. In 2016, she watched her husband, John Rehm, suffer and eventually die without being able to receive the medicine he wanted to take to end his life on his own terms. He was ready to die, so he chose to Voluntarily Stop Eating and Drinking (VSED) and died 10 days later, while Rehm sat by his side and watched him suffer.
For this book, and a complimentary upcoming documentary of the same name, Rehm spent two years interviewing patients with terminal illnesses, their doctors, nurses, ethicists, family members and loved ones left behind. What she discovered is that the patients she interviewed were grateful, empowered, and emphatic in their resolve to die on their own terms, but professors, doctors and experts in the field are divided about the use of Medical Aid in Dying.
Some opponents believe that it is unethical and unnecessary to end a person’s life through MAID. They point to modern medicine and our increased ability to manage pain and ease uncomfortable symptoms through palliative care. They argue that it is not our role to “play God” and that there is the possibility for error based on a patient suffering from spiritual or emotional distress rather than physical pain. Religious issues, historic racial issues and possible medical malfeasance are all addressed as reasons for opposition to MAID. For many doctors like Dr. Roger Kliger, “There are two ethical goods going against each other. You’ve got the ethic of autonomy going against the ethic of maintaining life.”
Supporters of Medical Aid in Dying cite that it is our right to make the decision for ourselves about when we are ready to die from a terminal illness. What’s clear throughout the book is that people seeking MAID do not want to die, they want to end their suffering and to exercise their rights to live and die on their own terms. With successful access to MAID, people gain a sense of control and report a greater sense of well-being and relaxation knowing that they have this option available if and when they want to use it. As Dr. David Grube, National Medical Director of Compassion & Choices, stated in a lecture to medical students at George Washington University, “Death is not the enemy-we’re all going to die. The enemy is terminal suffering at the very, very end of life… we can’t always manage intolerable suffering. And who defines suffering? It’s the patient who defines suffering, it’s not the doctor.”
What is a good death?
Throughout her book, Rehm asks both the people who support and those who oppose MAID how they would define “a good death”, and this is an area where we see all of humanity coming together in agreement. We all want to be together with family, to tell people we love them, to be comfortable and pain-free, to ask for forgiveness and to share memories, and to say goodbye. In this regard, we are united.
The message of this book is really an invitation. We need to have these hard conversations. We need to ask our loved ones, “What do you want when you are at the end of your life?”
As these conversations about aid in dying take place in homes as well as in state legislatures, it is Diane Rehm’s hope that more and more people in decision-making roles in our country will see clearly that each and every person has an individual right to determine when it may be the right time for them to die. She also hopes that those individuals will be able to take advantage of such laws that can offer relief, an end to pain and suffering, and a sense of peace for them and their loved ones.
In addition to being a thoughtful contributor to our blogs, Diane Button serves as a Client Advocate Volunteer for End of Life Choices California in the Bay area. She and other volunteers are also available to speak to community groups interested in learning more about the California End of Life Option Act, writing an Advance Health Directive, or finding ways to begin such conversations with their health care providers and loved ones. Please go to our website to find more information or to request a speaker.
End of Life Choices California offers information and non-judgemental personal support to anyone seeking help managing end-of-life care planning or decision-making in California. Please visit our website www.endoflifechoicesca.org for more information. To speak with one of our volunteers, please call 760-636-8009. All our services are free of charge.
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I especially appreciate the comments in the foreword and about the author, Diane Button, and all the things Client Advocate Volunteers do for EOLCCA.