Making A Hard Choice: A Lesson from “Bob’s Choice”

When it comes to making decisions atthe end of a person’s life, we are faced with hard choices.There are free resources available across the country for those considering their end of life wishes, and it differs from state to state – including Minnesota and the surrounding states. 

An organization called Compassion & Choices serves to educate around end-of-life care, and support legislation that improves options. Their experience with the LGBTQ community gives them an advantage as a resource for an individual’s end-of-life decisions. 

We discussed these resources with Dr. Rebecca Thoman, the Doctors for Dignity Director for Compassion & Choices in Minnesota. She explained how once such choice could be beneficial for one’s end-of-life decision. She spoke to us as the documentary, “Bob’s Choice,” which was shown on June 14 with a panel discussion after the showing. The documentary was produced by NBC affiliate KING5 in Seattle a few years. The showing was co-hosted by Rainbow Health and the First Unitarian Society, where they were joined by lawmakers and storytellers on the panel afterwards. 

LAVENDER: For the readers who are unaware of Compassion & Choices, please explain who you do and the programming you have nationwide – and in Minnesota?

DR. THOMAN: “Compassion & Choices has been around since 1980, and is the largest nonprofit working to expand and improve end-of-life options around the country. We do this in courtrooms and state capitals, as well as through community education and medical outreach. 

“Our Minnesota team’s focus is threefold. First, we advocate for the passage of the Minnesota End of Life Options Act. This bill would allow mentally capable adults with six months or less to live, the ability to obtain a prescription for medication that would peacefully end their lives if their suffering became too great. This medical practice is referred to as medical aid-in-dying, or what others may call ‘death with dignity’. 

“Secondly, we are focused on educating people about their end of life options after a dementia diagnosis. This is crucial work, as according to a new study published in the Journal of the American Medical Association, nearly half of all older adults now die with a dementia diagnosis, up more than one-third (36%) in just the past two decades. 

Thirdly, our work involves collaboration with historically underserved communities to educate, advocate, and empower people to support one another through end-of-life planning. We are very focused on connecting to the African American and LGBTQ+ communities, who have been disproportionately removed from these conversations. Our pride event and this film screening are important components of that work. 

LAVENDER: The June program focuses on LGBTQ seniors and people facing end of life choices, give me an overview of this program – and the airing of this film- and why it is important for our community to participate?

DR. THOMAN: “’Bob’s Choice’ is a documentary that details the last weeks of an LGBTQ+ elder from Seattle who utilized Washington’s Death with Dignity law. This film is really special and we are honored to partner with Rainbow Health and First Unitarian Society to make this available.  It is important to us that we use our platforms to showcase stories of advocates living with terminal illness. This film is a deeply vulnerable and intimate look into what medical aid-in-dying is really like. There is so much misinformation, and a lot of completely rational fear of the unknown – and Bob wanted his story to teach others. 

“LGBTQ+ community members were some of the first advocates of medical aid-in-dying during the height of the AIDS epidemic in the 1980’s, with many sharing stories of loved ones who suffered unnecessarily at the end of life. The LGBTQ+ community remains a natural ally in our work because bodily autonomy is a basic human right. The two movements share the belief in everyone’s right to make their own healthcare decisions that are in line with their values and priorities.”

LAVENDER: What inequalities do you see when it comes to LGBTQ individuals and couples when it comes to making these choices in contrast to their hetrosexual counterparts?

DR THOMAN: “There is still much research to be done in this area, but we do know that LGBTQ+ elders have significant fears around safe medical care, healthcare proxies, and even independent living. For instance, many LGBTQ+ elders may have to hide their partnerships to access housing or have a family member who makes unwanted decisions on their behalf at end-of-life.

“As I mentioned, some of our work happens in courtrooms, and in the last year, our legal team supported two important cases. One out of New York and another in Idaho. The NY lawsuit claims that New York City violated a transgender Muslim man’s specific instructions on properly completed state forms about how to take care of his body after death. The aftermath was so devastating, his partner miscarried the twins she was carrying when he died. More information about the case can be found here. 

“The case in Idaho was on behalf of four women and challenged a law that voided the living wills (also known as advance directives) of all pregnant people. Under Idaho’s interpretation of the 2005 law, advance directives were invalid regardless if the pregnant person wanted no medical treatment or all possible treatment. It was a violation of their constitutional rights to medical decision-making and bodily integrity, gender equality and freedom of speech. This settlement required Idaho state officials to create a new advance directive template without the pregnancy exclusion and to notify the more than 40,000 people who filed an advance directive with the Idaho registry of this change. More information about the case is here. 

“End of life planning requires self exploration, and deep conversations with loved ones, friends, and medical teams. If those around you are not supportive of who you are as you live, it makes sense to fear what support you will have when you die. This leads to painful isolation after a diagnosis, and devastating missteps made in crisis. 

“Groups like Rainbow Health provide safe medical spaces for people to be honored and supported through their entire process, and we would love to see those resources grow. We need more LGBTQ+ physicians, and for all medical professionals to be educated on these issues. These issues need to be confronted rather than ignored or avoided.”

LAVENDER: You talk about advocacy, please explain what current strategies and efforts are underway through legislation and in the care community?

DR THOMAN: “Our advocacy centers around telling stories. Stories like Bob’s, our supporters, or one of many other terminally ill Minnesotans we have connected to. There is far more power in personal story than statistics – and the LGBTQ+ community has always been at the forefront of sharing truth as activism. We are honored to be trusted with many stories, and to have so many awesome partners willing to help us share them. Including Lavender! 

“In terms of the care community – we are leading the effort to pass the medical aid-in-dying law, but Rainbow Health is offering a safe space for people in Minnesota. For more than 40 years to offer trauma-informed, compassionate medical care to anyone regardless of ability to pay and that is incredible. They are our partner in this event, we are honored to support the incredible work they do to take care of their patients and our community.”

Dr. Thoman summed it up, “Compassion & Choices, we want to honor the way people have lived by ensuring them freedom and safety when they die. We will all face death, and our goal is to help demystify unknowns, and instead meet people’s fear with compassion and connection. Again, stories are the best way to do this and we are honored to hold events like this one. We also have a robust Storytelling program, which features many Minnesotans.”

Information about Compassion & Choices work in Minnesota can be found at https://compassionandchoices.org/in-your-state/minnesota  where you can also sign up to volunteer or learn more about our work and issues in general. You can also watch “Bob’s Choice” and read more news on this film here – it includes an interview with Bob from KING5.