Wendy Engelmann

Wendy Engelmann's mother, who was diagnosed with glioblastoma, utilized Colorado's medical aid-in-dying law. In their journey to access the law, they discovered that legislation does not equal access.

Wendy shared her story in April 2019.

My family is small and close. My only sibling is a sister who flew in from Arizona to join my Mom and Dad, husband and daughter and I for Christmas. On December 22, all six of us went to see a play together. While there, my 73-year-old – doesn’t take a single medication, never ill – mother suffered a grand mal seizure.

Tests revealed a brain tumor. Doctors recommended surgery as soon as possible. Hospitals don’t schedule surgeries on Christmas Eve and Christmas Day – we were lucky – that meant that the room and the surgeon were both available to perform the surgery the very next day – Christmas Eve. Mom understood the risks and agreed to them. She wanted answers. We all expressed how much we loved each other and knew there was a chance she wouldn’t come out of brain surgery. Again, we were lucky. Mom did come out of the surgery her same cheerful self. That was where our luck ran out.  

Mom was diagnosed with glioblastoma, a malignant and aggressive brain cancer, and was given a prognosis of three to six months to live without treatment and up to twelve months with chemotherapy and radiation. Mom was not interested in chemo and radiation and immediately asked about medical aid in dying, which she remembered our entire (very politically diverse) family had supported passing just a few years before.

As we brought Mom home and settled into our new reality, my sister and I began climbing the very steep road that is accessing medical aid in dying in Colorado. We scheduled a follow-up appointment with Mom’s surgeon and the palliative care department. We discovered that Mom and Dad’s insurance would cover the emergency visit to the hospital, but that hospital was not part of their regular plan, so it would not cover palliative care follow up there. We asked them if there was any way we could see them just twice – even if it was private pay – to get the medical aid-in-dying prescription. They said no.  

Roadblock.

Next, we called her primary care physician. Because it was the Christmas holiday, her doctor was out of town for two more weeks. We were painfully aware that time was our enemy in more ways than one – because Mom was dying of a brain tumor, it was likely that she would lose cognitive functions as the tumor spread and grew. The language in the legislation was clear – she had to retain mental capacity to qualify for the prescription.  

Another roadblock.

We reached out to the only hospice in our area we had been informed had a medical director willing to write the prescription for eligible patients and explained our situation. They said that their previous medical director had left – they were no longer able to help patients who qualified under the Colorado law.  

BIG roadblock.

At this point, well into January, my sister and I were getting frantic. Thankfully, we came across Compassion & Choices’ website during our research and were provided information about Compassion & Choices’ Doc2Doc Program – a free, confidential telephone consultation tailored to practicing physicians – to take to Mom’s doctor. Finally, a lifeline.  

Mom’s primary care doctor had never written the prescription, but when Mom met with her, she said she believed in it and that she wanted to learn how – so that she could provide patients like Mom the option that they choose and deserve. She documented the first request, scheduled the second appointment for 15 days later, met with our entire family at the beginning of February and wrote the prescription. Our Mom was immediately and profoundly thankful and relieved.  

On April 12, Mom determined that her symptoms were preventing her from continuing to live an acceptable quality of life. The six of us gathered in her kitchen. We drank margaritas, we toasted one another, Mom drank her meds, and six minutes later she was unconscious. Two hours later she was dead. It was a very peaceful process and we could not be happier that Mom had that control and choice about how and when her fight with her glioblastoma would end.

The process of obtaining an aid-in-dying prescription was daunting, and not something my 73 and 76-year-old parents would have been able to navigate on their own. Had my sister and I not been the strong advocates, serious researchers, and tenacious family members that simply would not take no for an answer, we never would have been successful in helping Mom get her prescription.

Making this decision and then accessing this prescription should be a thoughtful, serious, and focused effort. It should not be an endurance test to determine who is strong and committed enough to overcome gigantic hurdles. We need to build speed bumps in this road process, not roadblocks.  

Compassion & Choices understands that having a medical aid-in-dying law does not equal access. They continue the work to ensure dying people have real access to hard-won medical aid-in-dying laws. My family and I are grateful that Compassion & Choices and its Colorado outreach manager were able to provide much-needed support and information in this journey.