Dying in California Has a New Option

A new path to consider...

A new path to consider…

California residents with a terminal illness have a new choice.

Starting on June 9, 2016 the End of Life Option Act (EOLOA)* offers a death with dignity.

No it doesn’t!

It’s suicide sugarcoated with clever phrases. Taking your life is immoral, unethical, and—especially for people of faith—a sin of immense proportions.

Without a doubt, the EOLOA will prompt varied reactions: embraced, vilified, or misunderstood. But it is the law.

Oregon became the first state to legally allow terminally ill patients to end their lives with doctor-prescribed medication in 1997. I lived in Oregon when Measure 16’s Death with Dignity Act appeared on the 1994 ballot. After considerable prayer and thought, I voted against the measure. It passed with 51% of the vote (and was later affirmed by 60% of the voters).

My “no” vote reflected reluctance about giving doctors so much control. Rationally, I understand. Doctors are trained to objectively examine patients. Yes, human mistakes happen, but a physician’s conclusion informed by tests, technology, and experiences are as good as we can get for a diagnosis. Nonetheless, another side of me didn’t want this decision to prioritize the medical. Death is a natural part of life. It is often better understood emotionally and spiritually.

With the EOLOA, patients are required only to inform physicians of their plans. No one else will know a patient’s intentions unless she or he chooses to share it.

Why not include ministers if the person is religious?

Shouldn’t the family be involved?

Playing “devil’s advocate,” it can be argued that if a dying patient wishes to consult clergy . . . they can! If wishing to discuss the EOLOA’s pros and cons with family . . . they can! However, some don’t have (or care little about) religious beliefs. What if the patient’s family has a history of anger or abuse?

Still, when studying the Oregon ballot in 1994, I couldn’t ignore my nagging thought: why give so much power to the medical community?

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Like Oregon, California’s EOLOA requires that two physicians agree a patient has an illness with six months or less to live. This is similar to the requirements for hospice care.

But there are differences. If either doctor has concerns about the patient’s decision-making abilities—maybe mental health concerns or substance abuse issues—a mental health specialist determines if the patient can make her own choices.

Governor Brown signed the law in October 2015. The End of Life Option Act officially begins on June 9, 2016

Governor Brown signed the law in October 2015. The End of Life Option Act officially begins on June 9, 2016

A California resident 18 years or older seeking the EOLOA must make two oral and one written request to his doctor. There is a 15-day waiting period between those two appointments.

The cost of the medication—as many as 100 barbiturates (or “sleeping pills”)—is not currently covered by insurance. The high-end guesses for the prescription’s price is $5,000. It may be lower and California may provide financial assistance for some. Preparation involves “crushing” the pills and mixing them into a liquid. This “slurry” is then swallowed.

If every guideline is followed, the death certificate lists “cause of death” as the terminal illness diagnosed by the physicians.

All the EOLOA requirements—there are more than I’ve mentioned—are patient-driven. From first contact with doctors to ingesting the medication, the patient must take every step.

Will costs prohibit some from considering EOLOA as an option? Is that fair?

Since certain steps require using hands (signing documents, blending the medication), patients with illnesses like ALS or Parkinson’s can’t participate. Though mentally competent, they have physical restrictions. Is that fair?

Because I voted against Oregon’s Death With Dignity, I must be against the EOLOA. Right?

You would be wrong.

Really? And so you may ask of me: what do I think?

Excellent question. But first and foremost that must be your question. What do you think?

nerudaI suspect you’d resent it if I cleverly avoided answering. But, bad news for you, I have a convoluted response. Once I wrote a novel (rejected by many fine literary agents and editors) with a character named Grandy. He had cancer and was nearing death. Grandy wanted the novel’s “hero” to help him with an assisted suicide. In the first draft, after a crime was solved and the nasty villain got his comeuppance, Grandy’s friend did assist with the suicide. But all novels have many drafts. Writers correct mistakes and (we hope) strengthen the story. By the final draft, Grandy decided to have his disease’s pain managed by medication, dying a natural death with the novel’s “hero” beside him.

It was merely a failed, unpublished novel. But it was also a truth for me while “living” with the characters during years of writing and revising. Grandy dreaded being alone and worried he no longer mattered. Additionally, he didn’t want to be a burden to anyone. Honestly sharing his fears led to support from a “family of friends.”

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Why do people decide to end their life? In an October 2015 U.S. News and World Report article, Oregon residents (1998-2014) gave these answers:

  • 782 said . . . Losing autonomy
  • 758 – Can’t engage in activities that make life enjoyable
  • 579 – Loss of dignity
  • 428 – Losing control of bodily functions
  • 342 – Burden on family, friends/caregivers
  • 211 – Inadequate pain control or concern about it
  • 27 – Financial implications of treatment

These were reasons given by Oregonians that chose “death with dignity.” Compared to losing personal freedom, physical pain was low on the list. That didn’t surprise me. Does it surprise you?

And what would your reasons be?

Because I think hospice is the best choice when confronting a life-limiting illness, I can’t imagine a better path for support during my final days. But I am reasonably healthy right now. And though I had a novel’s character experience dying and death, it was only fiction. My parents died different and difficult deaths. But their deaths will not be mine.

Every person is unique. Every situation is different. People confident about their beliefs or values can change their minds when approaching death . . . and as death approaches them.

California residents (along with a few other states) now have more choices for end-of-life decisions. I fervently believe everyone needs to openly and honestly talk about what they want.

In order to start the EOLOA process, a person must talk with a doctor.

But I hope that’s not where the conversation ends for the patient, and their family and friends. Let others know your thoughts, worries, fears, and beliefs.

Your life, and your decisions, does matter.

(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)

*So far, the best summary I’ve found for the EOLOA is the UCSF/UC Hastings Consortium on Law, Science, & Health Policy PDF.

[Image is “Crossroads” from Carsten Tolkmit – Kiel, Germany via Wikimedia Commons}

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Comments

  1. No matter our opinions on physician assisted suicide everything needs to be on the table for discussion and it is obviously a much wanted discussion. One of the concerns that I have has anyone considered the physician in this who does the prescribing of medication for someone to end their life? How will this affect their wellbeing? I would like to also hear from families of those who have ended their life through physician assisted suicide. How are they feeling afterwards? Has their been anything for them that they have specifically struggled with? I am also concerned about the language that is used “dying with dignity” when it actually is suicide. This may or may not be religious belief for some, but what I am specifically referring to is how we change the language to cover up or make acceptable the truth of what something is.

    • Thanks, Jennifer. I will try to react a bit more “in depth” over the weekend. Always appreciate responses . . .

      My additional thoughts on the next day:

      While appreciating your perspective, I don’t agree with all of it. No surprise . . . this is an issue inspiring a wide variety of reactions.

      It will be important to learn how the EOLOA impacts the doctors meeting with patients and prescribing the medication. What we discover from families grieving a loved one choosing to have a medically assisted death will be equally valuable. Based on Oregon’s experiences, there is research offering insights . . . such as this link to an article. Some data suggests families using Oregon’s Death with Dignity do well in their grief because 1) they often have openly discussed what the dying and death means and 2) they knew this was their loved one’s choice.

      What information will eventually come out of California’s End of Life Option Act? Lots! Oregon has about 4 million residents, California nearly 40 million. With ten times the citizens, along with California’s greater ethnic, cultural, and religious diversity, every year will add massive amounts of new data.

      As I said in my essay, some will decry this as suicide, others as a reasonable, but difficult choice. Legally, it’s not suicide. The law has been crafted to be clear about that for pharmacists, doctors, and patients. Just because the law states that, it doesn’t mean many won’t blame the EOLOA for condoning suicide. If someone thought California’s legalized death penalty for convicted criminals was murder, I doubt anyone could persuade them otherwise. We all view emotional, profound events and decisions differently.

      The EOLOA supports patients making their own confidential choices. It will never be an easy choice and the many “hoops” required to achieve it give opportunity for reflection and (I dearly hope) conversations with loved ones. Agree or disagree with the EOLOA, it is a path taken during one of the most precious and vulnerable times of life.

      I anticipate much more research and much more controversy. And I hope I will try to carefully listen to and learn from those involved with this journey.

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