To my readers: Many people have asked me whether a death doula could help them access medical aid in dying in Colorado. Since I didn’t know the answer to that question, I invited a death doula to write a guest post. I am grateful to Vanessa Johnston for agreeing to educate us! Joanne
By Vanessa Johnston
Denver EOL Doula, LLC
Vice president, Colorado End-of-Life Collaborative
I fervently believe we all deserve a peaceful death. Ideally, we should be surrounded by love and filled with grace as we face the end, and we should be treated with dignity by those who help us on our journey. Medical aid in dying allows you to choose a peaceful ending for your life, as long as you meet the statutory requirements and start planning early enough.
I’m an end-of-life doula, and I provide emotional, spiritual, and informational support to people who are dying and the loved ones who surround them. I primarily help clients who have been diagnosed with a life-limiting disease and are receiving palliative or hospice care. My passion is to help empower clients to create the ending for their life story that feels most appropriate for them, in whatever way is possible. Through compassionate companioning, deep listening, thoughtful vigil planning, and meaningful rituals, I guide clients and those in their support networks through the dying process in a way that prioritizes dignity and agency.
Let’s talk about what the word “agency” means. Having agency is possessing personal autonomy or the independent ability to act on your own will. Often, dying patients feel as if they have been stripped of their agency due to the unforgiving nature of whatever diseases may be ravaging their physical bodies. Illnesses that impair cognition also destroy our agency, just in a different way. While it’s true that being human means we each have an inevitably finite lifespan, how we approach that mortality is an individual choice. In the end, I seek to return as much agency as possible to all of my clients.
There are many ways to die a peaceful, tender death. From my perspective as a death doula, medical aid in dying represents only one version of empowerment at the end of life. However, there are still many misconceptions surrounding this option, which is legal in Colorado and nine other states plus the District of Columbia.
The first thing to know is that you must have the luxury of time. People who die suddenly obviously aren’t eligible, and patients whose illnesses progress rapidly may miss their window of opportunity to apply for MAID or complete the process of ingesting the medication. Sadly, I have had more than one client who thought MAID would be an option for them, but then it was not accessible because they were no longer able to demonstrate they are acting of their own volition, as required. I have seen this happen with clients suffering from ALS and certain forms of cancer. Advanced Parkinson’s and multiple system atrophy (MSA) are other diseases that may also leave patients unable to participate.
The second thing to know is that even though medical aid in dying is legal in Colorado, health care providers are not required to participate. Any health care facility or doctor may “opt out.” This is one of the most important reasons to talk to your physicians early in your illness about whether they will support you in using MAID. Compassion & Choices and the American Clinicians Academy for Medical Aid in Dying are excellent national organizations that can help you find supportive care in your area if your physician chooses not to participate.
If you have roughly one to three months to go through the approval process and your doctor is willing to prescribe the necessary medications, then medical aid in dying may be an option for you, if you otherwise qualify. In Colorado, approval requires several steps: Patients must be over 18 and a resident of Colorado. Patients must submit a verbal request to their doctor as well as a written request. The prescribing doctor then has to certify that you have a fatal illness, you are likely to live six months or less, and you have the mental capacity to make your own decisions. As a safeguard for all involved, a second doctor can confirm your terminal diagnosis and decision-making capacity. Many people have died while waiting for approval for MAID, so that’s why I encourage you to think about it sooner, rather than later. You can change your mind at any time, even after picking up the prescription. For many people, simply having it in hand gives them a sense of comfort and control.
Keep in mind that it is not my job to convince anyone of actions to take or not take regarding their health or the trajectory of their natural lives. I simply assist people who have already decided what they want. Or, for people who aren’t sure what they want, I act as a sounding board so they have an attentive listener as they figure out what ultimately feels right for them. While some doulas may not be willing to help you actually navigate the steps of the approval process, I have no qualms about serving in that capacity. Be sure to ask your doula before you hire him or her if this is a service they offer.
I had the honor recently of guiding a family through the MAID process. My client had suffered consistently with a diagnosis that had become increasingly dire over a twenty-year period. Fortunately, their illness did not affect their decision-making capacity or their ability to ingest the medication on their own.
Here’s what I did for them:
- I informed everyone about what to expect so there would be no surprises.
- I researched and consulted with colleagues to help the client explore some of the issues around the process that she had not anticipated or understood.
- After the client navigated the approval process, I helped them obtain the medications from one of the few compounding pharmacies in the state where they are available.
- I helped arrange the room where the anticipated death would take place. I set sacred space with intention and ritual.
- I supported the family as well as the client.
- As an independent death doula, I was able to mix and prepare the medications. I also offered the patient a small dish of sorbet to help with the medication’s bitter taste.
I always work with a partner when facilitating medical aid in dying for my clients. In this case, a hospice social worker further supported the family as I attended to my tasks. We both sat vigil with the client and their spouse, and we shared poems, songs, and prayers. We encouraged the client’s family to share happy memories and meaningful stories. During this time of quiet companioning, my client fell into a deep sleep and then finally stopped breathing almost five hours later. They were surrounded by love and compassion in their own home, and their suffering was finally over.
I encourage you to talk with loved ones about how they feel about all end-of-life choices, but medical aid in dying in particular, because the rules can feel complicated when you are in a hurry and feeling stressed. And I urge you to start planning these critical conversations now, no matter how old you are or what your health status is. If it’s hard for you to think of a way to get started talking with a loved one about death, visit The Conversation Project web site, where you’ll find excellent tools that will make the job easier.
Note from Joanne to Vanessa: Thank you for giving us much to think about!
Note to readers from Joanne: Please tell us what you think about the ideas expressed in this blog. Let’s get a lively (but polite!) conversation going! Use the space under “Leave a comment,” below, to share your thoughts. Disrepectful or irrelevant comments will not be approved for publication.
Thanks for the opportunity to share my experiences. I especially appreciate you including links to Compassion & Choices, ACAMAID, and The Conversation Project. There are many helpful resources out there for these often challenging conversations.
Vanessa Johnston has so beautifully expressed so many factors that are involved when a patient wishes to control their own dying process in the hope of a meaningful, peaceful end of life. Her careful explanation of what she does to involve family in the process of planning, preparation and the procedure is so important. Unfortunately, most of the United States is without even the inadequate law that first passed in Oregon and EOL Doulas would take a great risk to provide her kind of caring service. Having been active in providing similar information and support to all states in the Union over the past 30 years so that individuals may have access to a possible peaceful end-of-life, I feel sure Vanessa has been rewarded by lifelong appreciation from many loved ones of the patients with whom she was present when they died. Her description of having favorite music, food and drinks is an added joy to a true end-of life celebration. I like to call them “Living Wakes.”