Former NPR host Diane Rehm’s new book, "When My Time Comes," explores the movement nationwide to allow for terminally ill patients to access end of life drugs.
Rehm became an advocate for aid-in-dying laws after losing her husband of 54 years to Parkinson’s disease. They lived in Maryland where access to end-of-life drugs wasn’t an option. When her husband, John Rehm, decided he wanted to die, Diane stayed with him for 10 days as he stopped eating, drinking and taking medication.
“When My Time Comes” features interviews with doctors, patients, advocates and critics of access to end-of-life medication. The interviews were also video recorded and will be turned into a documentary for PBS. It includes conversations with supporters like Dan Diaz, whose wife, 29-year-old Brittany Maynard, moved from California to Oregon to access end of life drugs. Maynard had terminal brain cancer and end-of-life medication wasn’t legal in California.
Rehm also interviewed faith leaders and doctors who expressed a variety of concerns with the laws. The Rev. William Lamar, of the Metropolitan African Methodist Episcopal Church in Washington, D.C., raised criticisms that were unrelated to his faith. He explained the distrust among many African Americans with institutional medicine in the United States, citing a dark history of medical experimentation and abuse.
Rehm will be in South Florida Thursday for an appearance at Miami Dade College’s Wolfson Campus. Her event comes as Florida lawmakers are examining this issue. A new bill filed by state Sen. Kevin Radar, D-Boca Raton, the Death with Dignity Act, would allow for qualified terminal patients to end their lives after getting oral and written consent from qualifying doctors. Currently eight states and the District of Colombia have death with dignity laws.
WLRN Producer Chris Remington spoke with Rehm on Sundial about the book and how families can best approach conversations about death.
WLRN: For those who haven't read this book or are unfamiliar with your story, aid-in-dying is a very personal issue for you. Can you first define when we talk about aid in dying, what that exactly means?
REHM: Medical aid in dying is when someone is very ill, either from cancer, from stroke, from heart disease or whatever. And two doctors, by law, must determine that that individual is within six months of death. Then after a number of days, if that person continues to wish for medical aid in dying, a prescription is written and usually held by the doctor. But in some cases given to the patient when he or she has signed all the documents and has made clear his or her wishes. At the time of death, that individual must be able to self-administer the medication.
I want to chat with you about the story of Lori Wallace Pushinaitis and Dr. Catherine Sonquist Forest. You interviewed them for the book. And when Lori's breast cancer metastasized and was considered terminal, Dr. Forest committed to being with her throughout what they thought would be her last six months. So I'm curious how the relationship between doctors and patients has changed because of access to end-of-life drugs, especially when you think about patients desires for what they want in their final stages of life.
As soon as Lori found out that she had cancer and she did have the BRCA gene, she said to her doctor, "I want to be on that medical aid-in-dying list." Now in the end, even though she had the drugs, she did not use them. And her doctor supported her through every step of the way.
You're quite right, Chris. Medical aid in dying has changed the relationship between patient and doctor in those states where its allowed and in those situations where doctors themselves support the patient. Now, there are many, many doctors who don't agree that a doctor's role is to help a patient die. They see the Hippocratic Oath that they've taken as a pledge to do everything they can to do no harm.
You have more than two dozen interviews included in the book, and there's a question you continually raise: "What is a good death?" How do you define the idea of a good death?
My idea of a good death is one that is without suffering, is with my family and dear friends around me. I have a chance to say goodbye to each and every one, to tell them exactly what they mean to me.
