How to Die in California

Late last month, Betsy Davis died at her home in Ojai, California. The 41-year-old performance artist was suffering from ALS, a progressive neurodegenerative disorder, also known as Lou Gehrig’s disease, which had already robbed her of the ability to stand, to walk, and to speak clearly. Facing the prospect of a slow and lingering death as she lost her capacity to move, to eat and, eventually, to breathe, Ms. Davis took her own life by taking a lethal dose of barbiturates.

In doing so, Betsy Davis became the first terminally ill patient to die under California’s End of Life Options Act. That law, which went into effect in June of this year, allows a terminally ill resident of California to be prescribed a lethal dose of drugs so long as they meet certain medical criteria, make two oral and one written request for physician aid-in-dying, and have the ability to take the drugs without assistance.

In passing the End of Life Options Act, California became the fifth state to legalize physician aid-in-dying. Oregon was the first state to legalize the practice by popular referendum, implementing it in 1998. Washington and Vermont followed suit in 2008 and 2013, respectively. Montana is the only other state where the practice is allowed, the result of a Montana Supreme Court ruling that nothing in that state’s laws prevents the practice.

California’s Act was passed largely thanks to the efforts of two advocacy groups. The first is Compassion and Choices, a national organization that has been working to expand end-of-life treatment options (including physician aid-in-dying) for the past 30 years. The other organization involved, and the one that has been the most instrumental in changing public opinion about physician aid-in-dying, was the Brittany Maynard Fund.

The Fund was established in 2014 following the death of Brittany Maynard. Earlier that year, the then 29-year-old Californian was diagnosed with astrocytoma, a rare and aggressive form of brain cancer. Despite treatment, which included a partial craniotomy and the removal of part of her temporal lobe, Brittany’s cancer continued to progress and she was given a terminal diagnosis.

Facing a brief future filled with pain as she slowly lost her memory, her vision, and her ability to walk and to speak, Brittany sought to end her life on her own terms. Unfortunately, at that time physician aid-in-dying was not available in her home state of California. In response, she and her husband left their family, friends and home behind and moved to the neighboring state of Oregon. It was there, on November 1, 2014, that Ms. Maynard ended her life peacefully by taking a lethal overdose of drugs that was prescribed to her under that state’s Death with Dignity Act.

In going public with her story, Ms. Maynard became one of the most visible faces of the right-to-die movement. A young, beautiful and talented woman, she presented to the public an image that was very different from what most pictured when thinking of the terminally ill: she wasn’t old, she wasn’t depressed or suicidal, and she wrote and spoke bluntly but eloquently about her terminal diagnosis and her desire to die on her own terms and in her own way. She also had the support of her husband of three years, Dan Diaz, who founded the Brittany Maynard Fund in honor of her memory.

In one of those rare coincidences, earlier this month I had the good fortune to meet Dan Diaz. Purely by chance, my husband and I happened to be dining in a bar-restaurant in New York City’s Little Italy when Mr. Diaz sat on the stool next to us. He was in town briefly as part of his unceasing efforts to lobby for expanded end-of-life options in New York and the other 44 states where physician aid-in-dying is still illegal.

Over the next two hours, we talked openly and honestly about Brittany, her experience, the arguments for and against aid-in-dying, and whether or not New Yorkers would be open to making the practice legal in this state.

Neither he nor I know the answer to that last question. The arguments for legalizing physician aid-in-dying are compelling, but so too are many of the concerns raised by critics. For example, physicians opposed to the practice believe that hastening death run counter to the moral duties outlined in the 2500-year-old Hippocratic Oath. Others fear that terminally ill patients will be pushed into ending their lives because of the emotional and financial burden placed upon their loved ones. Disability rights advocates worry that legalizing physician aid-in-dying devalues the lives of those living with physical or mental limitations, and point to the recent legalization of euthanasia for severely disabled children in the Netherlands as proof that we are but one step away from legitimizing their murder.

These are all valid concerns, and ones that need to be respected and addressed as we begin to debate the issue of physician aid-in-dying more and more publicly. Moreover, we need to bluntly discuss the issue of death itself, by talking with our friends, families and physicians about what a ‘good death’ means for each of us, by planning for the inevitable with our loved ones and our lawyers, and by exploring and expanding alternative end-of-life treatment options like hospice and palliative care. That is the true legacy of women like Brittany and Betsy: not the hastening of death but the celebration of life, no matter how short.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on August 25, 2016, and is available on the WAMC website.]

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About Sean Philpott-Jones

A public health researcher and ethicist by training, Sean holds advanced degrees in microbiology, medical anthropology, and bioethics. He is currently Chair of the Bioethics Department at Clarkson University's Capital Region Campus and Director of the Bioethics Program of Clarkson University-Icahn School of Medicine at Mount Sinai, and Director of two Fogarty-funded programs to provide research ethics education in Eastern Europe and in the Caribbean Basin. Until his term expired in August 2012, he served as Chair of the US Environmental Protection Agency’s Human Studies Review Board, an advisory panel that reviews the scientific and ethical aspects of research involving human participants submitted to the EPA for regulatory purposes.
This entry was posted in Cancer, Celebrities, Disability, End-of-Life, Physician Aid-in-Dying, Policy, Uncategorized. Bookmark the permalink.

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