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Margaret Ervin: The Right to Self-Determination

Margaret Ervin is a hospice social worker in Placerville, California.

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One of the greatest privileges I have had in my years as a hospice social worker is helping terminally ill patients access California’s End of Life Option Act.

With the same courage and self-determination that embodied how they chose to live their lives, [my patients] decided that death with dignity was the best, most fitting option to bring comfort and control to their final days.

I was aware of the death with dignity movement before California’s campaign to pass the End of Life Option Act heated up in 2015. I knew about the work to pass and defend the Oregon Death with Dignity Act, and I followed high-profile cases, like that of Terri Schiavo, that raised vital and often contentious issues about end-of-life care.

Supporting California’s Law

I have always believed in a patient’s right to decide how she dies; as such, I was honored to join the Coalition for Compassionate Care of California in 2015 and work toward passage of assisted-dying legislation in my state. While I was not able to testify at hearings on the proposed law, I kept abreast of goings-on and donated to agencies working on the cause.

Like millions of Californians, I celebrated when lawmakers passed the End of Life Option Act in September 2015 and when Governor Jerry Brown signed it into law the following month.

The First Patient

My first experience working with a patient interested in using the California law was in June 2016, just after the law took effect. He was an ALS patient with a brilliant mind, trapped in a degenerating body that no longer served him. It infuriated him that he had no control.

He had been closely tracking the progress of California’s assisted-dying bill. Once it was passed, he told me, “I’m doing it, and I want your help.”

Time was of the essence for him. As with all patients who use death with dignity laws, he had to self-administer the medication. Since he was in the final stages of ALS and suffering from debilitating muscular degeneration, we had to act before self-administration became impossible.

He was fortunate to have a doctor in San Francisco who offered to be his attending physician and found him a consulting physician and pharmacist who would help him obtain the medication he would use to hasten his death.

Being There at the End

Once he had chosen a date, he asked me to be there with him. I was honored. He was my organization’s first End of Life Option Act patient, and my supervisor was very supportive of the process and of me as I prepared to be with a patient as he ended his life.

I remember so clearly how at peace he seemed that night. His family, friends, and I lit candles and darkened the room. He drank the medication, and in five minutes he was snoring. His best friend played guitar and sang the Beatles’ “Let It Be.” Several minutes later, he was gone.

The moment, and the process, just felt right. He had exercised his right to self-determination and died just as he’d wanted.


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Death and Margaritas

My second patient was an 83-year-old woman with lung cancer. She lived alone and was fiercely independent. She wasn’t going to ask her family to change her diaper or otherwise provide care that would erode her pride and dignity. This was her last opportunity to truly be in control of her body and her decisions.

After some initial obstacles, we found her two doctors who approved her request for medication. She wanted me to be there by her side when she took it. In the end, her daughter made the trip to be with her as well.

She wanted to imbibe her medication in a margarita. I had a virgin margarita and together we drank our cocktails. It only took six minutes for her to die.

Providing Great Comfort

The wife of a Vietnam veteran dying of glioblastoma got in touch with the organization I work for after connecting with Dr. Loney Shavelson of Bay Area End of Life Options in Berkeley. She was a strong advocate for her husband and wanted very much for him to be able to use the End of Life Option Act. Dr. Shavelson and I worked in collaboration with other medical professionals to ensure the patient was able to access the law. He knew what to expect and what he would experience as the medication took hold. This provided great comfort to him and his wife.

I worked with Dr. Shavelson again to help a very young patient access the law. He was just 27 years old, a very bright first-generation immigrant from India with a very rare form of cancer. I became his social worker after Dr. Shavelson suggested he enter hospice care.

I met his family, who came to California from India to be with him. I was not with him when he ingested the medication, but his family told me that he died peacefully a few minutes after taking it. His mother was eloquent and unfailingly supportive of him.

“Whatever my son wants, I want for him as well,” his mother said. “I know he’s been in a lot of pain, and I just want that to be over for him.”

Finding Peace in Death

And then there was the 37-year-old woman with congestive heart failure. In some ways, her case was the saddest, but she seemed to find true peace and spiritual contentment through being able to decide how she would die.

She weighed almost 600 pounds. She lived alone but spent quite a bit of time in the emergency room. At a certain point, it was decided that she shouldn’t go back home. Instead, she entered hospice care, where I worked with her to help her plan the end of her life. She had had a difficult life. It was a gift for her to be able to end it gently, according to her wishes.

When the time came, we dressed her up in her favorite dress. She said, “This is my homecoming. I’m excited to be going home.”

Though she hadn’t planned on dying so young, being able to have a good and peaceful death was probably one of the best things that ever happened to her.

Educating and Advocating

More and more people in my workplace are asking about death with dignity. Our staff is still getting educated on the nuances of the End of Life Option Act, and I’m doing my best to keep my colleagues apprised of the latest news and findings about how patients are utilizing the law.

I also stress that language matters. Using the correct terminology—“death with dignity,” “aid in dying,” and “assisted dying,” for example—is essential; using misleading terms parroted by opponents, such as “assisted suicide,” is unacceptable.

Margaret Ervin with Colonel Patsy Thompson at the 2017 California Hospice and Palliative Care Association awards ceremony.

My work involves being with people at the final stage of life, often when they are at their most vulnerable and frail. What I have witnessed is that, for terminally ill patients, death with dignity means having control and the knowledge that if things get unbearable they have the option to end their life how they see fit. Statistics from states where death with dignity is authorized show that not everyone who gets the medication uses it. It’s simply about having the option.

How wonderful to be able to choose how you’re going to die. Imagine being able to say, “I’ve had a great life, now I’m going to have a great death.” This is an option 1 in 6 Americans now have.

But earlier this month a court ruling threw Californians’ ability to access that option into jeopardy.

A Commitment to Advocacy

On May 15, 2018 a Riverside County Superior Court Judge acted to invalidate the End of Life Option Act, saying the California State Legislature violated the state constitution by passing the law during a special session limited to healthcare.

This ruling, which is being challenged in court, has the potential to deprive millions of people of a compassionate way to hasten their death from terminal illnesses that cause unbearable suffering.

It saddens me that the rights of current terminally ill patients in California have been suspended. It is my hope that we continue to follow the lead of other states who have been providing this option to patients for many years. It is an unfair act to take away patients’ right to choose.

I am committed to advocating for death with dignity as an essential end-of-life option for residents of all 50 states.

(May 2018)


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