Dismantling roadblocks to end-of-life care access: a criteria for choosing your healthcare plan

Wendy Engelmann (left) with her mother, Virginia

This fall during open enrollment is the time when many of us are reviewing or reselecting our healthcare plans. We compare deductibles, out-of-cost maximums, prescription costs and premiums. Sadly, one of the most significant factors in making an informed decision is not prominently made available to the public – just as it wasn’t known to my family and I until my mother had a grand mal seizure, followed two days later by brain surgery and a terminal glioblastoma diagnosis. This factor is end-of-life care and specifically. The question we should all be asking is: Does my healthcare plan deny me access to medical aid-in-dying medication made legal in Colorado by a popular vote in 2016?

When tragedy struck our family last Christmas, my mother found comfort that she met the requirements of the measure she had voted for because she was mentally capable, with a terminal diagnosis of less than six months to live and she could determine for herself how much suffering – seizures, headaches, blindness – she would endure before taking the medical aid-in-dying prescription. It was when my sister and I started the process of fulfilling her wishes that we learned legislation does not equal access. 

We found that many hospitals in Colorado are religiously affiliated and have refused to allow their doctors to write this prescription, refused to allow their pharmacies to fill this prescription and refused to have the prescription administered to patients admitted at their hospitals even though those patients request and qualify for it. People need to be careful to review whether this is one of the hospitals on their plan. If it is, even if your doctor wanted to support your end-of-life decision, his or her hands would be tied. 

My sister and I found support in the organization Compassion & Choices, and we also connected with some amazing personnel at Denver Health. Eventually, we were able to fulfill my mom’s request and she died peacefully, at home, surrounded by people she loved. Since that time, I have contacted my own physician to confirm that she is both willing and able to write a medical aid-in-dying prescription for me should I find myself in a similar situation. My doctor is with Kaiser, a supportive managed care consortium, and I appreciate that they support their patients’ values in determining their own end-of-life care. 

This open enrollment season, I encourage everyone to ask the question of their potential doctors BEFORE completing the paperwork. The more Coloradans that hold their healthcare providers accountable in supporting the provision of end-of-life options, including the compassionate option of medical aid-in-dying, the better we are all prepared if and when we are faced with a terminal illness.