Start Talking Now (Please)

eoloa-mapCertain hospice-related subjects seem easy to write about. For me, California’s End of Life Option Act (EOLOA) isn’t one of those easy topics.

In June 2016, the EOLOA became law. I wrote about it then.

The EOLOA allows dying patients to take medication to end their life. Two doctors must examine that adult patient (18 years of age and older), with both agreeing she or he has an illness that will lead to death in six months or less. The EOLOA has extensive steps the patient is personally responsible for taking. Those steps include meeting with doctors, completing forms, and drinking the medicine. The process is intentionally complicated.

  1. Since that day in June, I think people are committing suicide.
  2. Since that day in June, I think doctors are murdering their patients.
  3. Since that day in June, I think there’s another option for a dignified death.

Which of the above statements would you make?

I suspect a majority of Californians—or anyone where a “right to die” law permits a medically assisted death—would need a fourth choice for a truthful answer:

  1. Since that day in June, like always, I just do my best to get through the week.

Most avoid the subject of death. Most worry about kids, work, parents, school, insurance, weather, mortgages, what’s for dinner, and a hundred other trivial or immense responsibilities and activities.

The end of my life is way, way down the road.

Dying happens to other people.

My current work at a specific hospice is one of the reasons that writing about the EOLOA is difficult. I don’t want to breach confidentiality for our patients—past, present, and future—that have used, or may consider using, the EOLOA. Additionally, my guess about the medical and non-medical staff at every hospice—including my current colleagues—is that they represent a wide range of strong, thoughtful opinions about the EOLOA.

Though #4 above is how many deal with divisive issues—too exhausted or distracted to think beyond today’s demands—there are controversial topics that inevitably create tension: abortion, death penalty, gun laws, and presidential candidates to list a few.

But the EOLOA concerns my death and my personal decisions. (People may vehemently debate the death penalty—and obviously capital punishment involves death—but most on either side of the issue will never be personally affected by the state ending the life of a prisoner. For the majority of protestors and supporters, it happens to someone else.)

And so what about your death? You may die accidentally, in a warzone, or from a natural disaster. You may die in your bed after a massive heart attack no one—including you and your doctor—anticipated. But this year hospice will serve an estimated 1,700,000 Americans of the 2,600,000 that annually die. They all have an illness that two physicians have agreed will cause their deaths in six months or less.

“Six months or less” is one of the guidelines where the EOLOA and hospice overlap.

When you know you are going to die, how do you want to die?

Here’s where my hospice co-workers may not like what I suggest . . .

Because I hope if you’re an “alert and oriented” hospice patient, still active and able to make your own decisions, that you immediately tell the hospice staff that you’re considering the End Of Life Option Act.

I hope that hospice (if in California) offers clear information on the EOLOA and answers all questions.

Based on research from Oregon, where the law became official in 1997, the typical patient considering a medically assisted death has several key concerns. Two of the “top five” are: 1) he or she dreads losing control of their life and 2) they don’t want to be a burden on others.

Those two concerns (and others) are exactly what hospice helps with.

And that’s why I’d want a patient to immediately discuss “end of life” options with hospice. We ignore death like, well, the plague. Too often, families don’t discuss choices; instead they dive into crisis after crisis. 30% of patients have a last breath within a week of entering hospice. They are frequently incapacitated by disease, treatments for the illness, and silence about any next steps. Hospice becomes exclusively about pain management and scrambling to support the overwhelmed caregivers. It’s a blur of fast decisions and fearful consequences.

But if you live in a “right to die” state and can make your own decisions and still take simple actions, please make sure your hospice gives you information about the EOLOA (or similar laws).

Listen carefully to them.

conversationAnd I believe (or guess if you prefer) that 99.8%* of the time patients and families will realize everything they think the EOLOA represents will happen within the care of a hospice. You will have control because of hospice. A hospice will support family and friends . . . the ones caring for a dying loved one and who view her or him as a “blessing” rather than a “burden.”

I believe including the EOLOA in early conversations about your death means that your loved ones will communicate (which includes different views, trust, listening, and expressing fears and honest words) about the real needs and hopes at a point when everyone can participate in decisions.

Whether you “agree” or “disagree” with the EOLOA, will it be an easy discussion? Probably not.

But might it be one of the most important times spent with those who matter most in your life? Yes.

 

* What about my guess that 00.02%—a tiny percentage—of patients might conclude a medically assisted death is their best choice? (Remember, it’s just my “guess.”) But one of the reasons I’m grateful for California having the EOLOA is there are situations where an individual will responsibly choose this particular path. When a patient talks in confidence with their doctors, they shouldn’t have to worry about breaking a law. What would a potential “situation” be? I have no answer . . . and that’s my point. End of life decisions are personal, unique, and private.

(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.)

Map image from here.

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Comments

  1. So important. It was much easier than I expected. After speaking to each person who might have the difficult job of implementing my wishes, I added, that if they were struggling with my choices, they should do whatever will bring them peace. I put that in writing and put it with the other official paperwork. Thanks Larry for this one. So important.

  2. For families who are considering
    using California’s End of Life Option Act,
    it would be a great service
    if the website of each hospice
    would explain exactly how deeply
    that hospice program will cooperate
    with patients who want a quick and painless death.

    • Thanks for commenting, James.

      I would hope that both the website and introductory words/information would also share about the choices.

      Hospices (along with other health care agencies) also have various choices to make about their end-of-life decisions/policies. Some hospices may prefer not to support patients who want to consider the “right to die” options. Other hospices may conclude they want to actively support patients in all possible, legal ways. Regardless of a hospice’s position, I do hope they let patients know their particular stance in an easy to understand and easy to access way.

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