The Beauty of Choice

Introduction:  This beautiful piece was written by one of our Client Advocate Volunteers, Jill Lloyd, in southern California. We are honored to be able to share it with you. We continue to expand our volunteer base and if you are interested in becoming a volunteer, please let us know. And, if you or someone you know are suffering from a serious or terminal disease and wish to discuss all the end of life options, without judgement and with great compassion, please give us a call. We can help. – Judy

Choice is the most powerful tool we have.  It defines how we live but it can also define how we die if we are ever in the situation of facing a terminal illness.

Both of my parents chose to die on their own terms.  But this was many years before California’s End of Life Option Act became law (EOLOA).

And it was not so much about bypassing the suffering of a terminal illness, far from it actually, but about their personal faith.  They were both devout believers in Christian Science, a religion set on beliefs and practices belonging to the metaphysical family in which sickness is considered an illusion that can be corrected by prayer alone.

So even though neither of them was diagnosed since they did not go to the doctor, they faced their illness relying on prayer.

My mother died at age 35 of breast cancer.  I was 5 years old. I had little understanding of the circumstances other than my child’s perspective: religion was responsible for my mother’s early death.  But I also had anger toward her for choosing such a path.   

Years later my father became ill.  He was 67 and started to have symptoms of what appeared to be congestive heart failure.  I had become a hospice volunteer by then and having seen many people at the end of their life, though not a doctor, I was able to recognize the signs of someone nearing death. I fought with him to get treatment at least to alleviate some of his symptoms of pain and breathing difficulties, but he refused and basically said to me “This is my choice.”  I still had old anger regarding my mother’s death, and now it was compounded by my father’s choice to do nothing.  He recognized my concern and fear of him dying but wanted me to know “This is my choice. It doesn’t mean you should do the same if you were faced with a comparable situation, just that we all have to honor each other’s choices whether we agree with them or not.”  That can be tough to accept when witnessing the suffering of a loved one.

Prior to my father’s death my sister died at age 27 from malignant melanoma.   She chose the medical route and opted for any and all treatments available until the end, and even when there was no hope, doctors continued to “experiment “ with her.  She suffered quite a bit and died in a hospital.

I experienced several other deaths of loved ones, all of which had made different choices in their end of life care.  It was the unnecessary suffering that bothered me with several of the choices.  

My best friend Gayle of 50 years, who was the sounding board for me through all of my losses, knew my anger and disappointment at my mother’s choice, my father’s choice and my sister’s choice even though she kept fighting for her life.  My sister didn’t want to have the same experience as our mom, so she opted for medical treatment until the very end. Gayle and I talked about what we would do if we were faced with the same situations and followed the progress of the EOLOA as it went through the many stages and wondered if it would become law.  

Then Gayle was diagnosed with pancreatic cancer, the same week the EOLOA did become law in June 2016.  She saw that as a gift in some way as she realized quickly that there was no hope for her survival and felt the only bit of control over her life she had left was to choose how she wanted to die.   She expressed gratitude that the choice for Medical Aid in Dying was available to her as she felt it gave her the option to live fully until she was no longer able to, and then choose a peaceful transition.

She asked me to assist her in the process to complete the required steps to access the law.  She was with Kaiser already, and that made things go smoothly as they already had a patient advocate in place, doctors that would prescribe as well as serve as consulting physicians.  She also chose not to go on hospice care. Rather, she wanted to monitor her illness and select the best day to die based on the progress of her illness. She wanted to enjoy life as much as possible until her symptoms would start to impact her ability to do so as well as care for herself.

While I was supportive of whatever she wanted to do, I was heartbroken and would ask her to rethink it.  She never hesitated in her decision making and stuck to the desire to end her life on her terms. She found great comfort in that.

It was three months after her diagnosis that she started to feel many painful symptoms of the cancer’s progression and set the date within the week.

The morning of her death, which she asked me and another friend to attend, she got up and fed her animals, had a light breakfast and had a heartfelt conversation with us.  She expressed her gratitude for the friendship and for honoring her choice without judgment. She died peacefully and quickly, which preempted any long-term suffering.

I have reflected on my parents’ and sister’s deaths and how they wanted to live their final days.  All of them made different choices. All of them were living and dying on their terms, regardless if I agreed with their choices or understood them. And who knows if they would have chosen the same route as Gayle, had the law been in place back then.

But having been through this experience with Gayle, I came to have a better understanding and acceptance of these choices.

When I left Gayle’s house the day she died, I spoke with a friend of mine about what I had just experienced.  I was sad but also felt honored to have been in that sacred space and time with Gayle. And my friend said, “what you did was an act of love… pure and simple”.

When we love without condition, we honor people for who they are and the choices they make whether we agree with them or not.  It’s tough to watch our loved ones suffer. Only they can decide what is truly right for them, just as we want the freedom to choose what feels right for ourselves.

But that’s the beauty of it all.   We aren’t here to agree or understand other people’s choices; just to honor them as part of our unconditional love for them.