Deborah Ziegler: “A Shocking and Cruel Ruling”

by Deborah Ziegler

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When I heard that a California judge granted a motion to opponents of the California End of Life Option Act, I was stunned.

While I am confident that on appeal the State Attorney General will prevail, and this compassionate law will continue to benefit Californians who so strongly support the law, I am so saddened that a judge would callously strike out at California’s terminally ill patients in such a cruel way.

Death and Healthcare

As I read about the ruling I was saddened to see that the judge doesn’t consider end-of-life decisions to be within the sphere of healthcare.

The end of our life is a time when many of us are at our most vulnerable state in life. It is a critical stage in our healthcare. It is a time in our healthcare when we are sometimes fearful of paternal physicians forcing decisions on us. Instead we look to exercise patient autonomy inherent in our American culture. This autonomy was given to us by the Patient Self-Determination Act (PSDA), a federal law.

It seemed that the judge stepped back in time, ruling that our dying process was something separate from life. Why do we draw up living wills, medical directives, and durable powers of attorney? Because dying is part of living; it is very much a part of our healthcare. We know that we will all die one day and we hope to die as well as we can.

If the dying process is not part of healthcare in our legal system’s eyes, we have a right to be worried.

If we are at the mercy of the courts, churches, or politicians we may be forced to die in ways that are not consistent with who we are. if we don’t have patient self-determination in the dying stage of medical care, then we may end up unable to reject medical treatment or worse we may find ourselves hooked up to machines that keep us technically alive.

As far as I can tell, the judge didn’t mention the terminally-ill patients that he was about to create a whiplash effect for. He never mentioned those patients who were mid-process in California’s legal option to die. He only spoke of procedural issues. He spoke of procedural technicalities.

I wish the judge had thought about the procedure that some terminally ill patients are undergoing: the procedure of dying. Because that procedure is everything to the dying. Their plan, their procedure is what keeps them breathing calmly. It is what keeps them sane in the last days of the loss and pain and letting go process.

My Daughter

My husband and I had to move our terminally-ill daughter, Brittany Maynard, to Oregon in 2014 so that she could seek a peaceful death there. I sit here thinking about Brittany. Missing Brittany. Loving Brittany.

Deborah Ziegler with Brittany Maynard during their 2008 trip to France

Everything can change in an instant. You could get a phone call that drops you to your knees this afternoon and if someone you love gets that heartbreaking diagnosis, you will wonder why your loved one doesn’t have choices.

When you are dying, your plan is everything. You collaborate with your doctors, you meet with hospice care, you talk to your family at length about what you do and do not want done in your last days, hours and moments of life. If someone threatens your plan to die it is devastating.

When I read of the judge’s decision, I imagined the impact that would have had on my daughter and my heart twisted in pain for the terminally ill patients of California who no doubt felt that their medical autonomy was being undermined.

Religion That Demands You Suffer

It is shocking that some religious leaders feel compelled to blur the boundary between state and church in order to demand that all patients suffer, that even those with unspeakable and uncontrollable pain suffer until the bitter end. I don’t understand this particular brand of religious love.

To have a religious group that you don’t belong to bring a lawsuit that strikes all your legal planning out is distressing. It causes the dying patient extra stress at a time when they struggle to face death as bravely as they can. To have a judge interfere with the law your plan to die is based on because of “procedural technicalities” is like having the very ground you stand on pulled from underneath your wobbling legs.

Why would any church, especially one that you may have never set foot in, try to dictate the way you or your loved ones will suffer? How long they must suffer? Why are the people you’ve elected to govern and represent you allowing someone to dictate how you and your family must die?

If you and your family face terminal illness, you will find yourself understanding at a deep and painful level that it is your inalienable right to die in peace.

Speak Up, Californians

I don’t believe that Californians will stand idly by while their right to a peaceful death is taken away from them.

I urge everyone to speak up for those who are too weak or ill to speak up. Advocacy takes energy. Sometimes the dying have no energy left to advocate for autonomy. Sometimes they must whisper their heart’s wishes in a doctor’s ear and fervently hope that their desires are heard and honored. The least we can do is speak up for their right to make a self-determination about what they will and will not agree to do in their dying days. We can speak up and demand that these patients be listened to and respected.

This is a medical end-of-life care issue. This is a human rights issue. This is serious.

I am making myself available to Death with Dignity National Center, which is working at this very moment to defend this important human right, in any way that I can help. Please join me in this fight.

About the Author

Deborah Ziegler is the author of Wild and Precious Life, a memoir about her daughter’s final year, a national speaker on end-of-life issues, and a member of our Board of Directors.