End-of-life options have vastly expanded since hospice was introduced in the United States in 1974 — improvements that are a direct result of efforts to bring end-of-life conversations into the mainstream. People are increasingly taking control of their care and talking openly about it. Just look at the visibility former President Jimmy Carter brought to hospice.

Compassion & Choices has led the way by empowering individuals to share their stories, translating those stories into powerful education and advocacy, and propelling those messages onto national  platforms to push for substantive changes in healthcare policy.  

While the Compassion & Choices storytellers program has served as a vital connection between the people who make up this movement and the public, we all need to be storytellers. Informing our loved ones, communities and healthcare professionals about our end-of-life wishes is a crucial step to getting care that aligns with our values. While most people will share their wishes privately, others allow their stories to be told publicly. As these conversations make their way to larger audiences, their impact grows exponentially. 

In 2011, the groundbreaking documentary How to Die in Oregon debuted at the Sundance Film Festival, where it won the Grand Jury Prize for documentary. Produced and directed by Peter Richardson, the film showcased Oregon’s Death With Dignity Act. It was heralded as an inside look at the medical practice that is now authorized in  ten states and Washington, D.C. The film was considered highly controversial at the time, and HBO was praised for taking a risk. Some interior scenes were filmed from outside, through a draped window, to protect the privacy of those involved. 

Now, 13 years later, the availability of information about end-of-life care is markedly different, with consumers driving a cultural shift toward greater openness about death and dying. Conversations about death have been normalized, as evidenced  by the growing body of books, television shows, podcasts and films that handle the topic with  candor and ease. This culture shift is shattering taboos about death and making discussions about end-of-life care more open and acceptable.

For example, this year two documentaries — the film Last Flight Home and the Amazon series Take Me Out Feet First — were big hits. Each was made by filmmakers who tell deeply personal stories about individuals planning the end-of-life experience they want. In the Netflix series From Scratch, Tembi Locke describes how she and her family dealt with her husband’s cancer diagnosis and death (see page 17). The fictional film Here Awhile (starring Anna Camp, who was featured in our winter 2020 issue) tells the story of a terminally ill young woman who returns to her home state of Oregon to seek medical aid in dying. Contemporary films like these depict death and dying in ways that were unheard of just 13 years ago. 

Writers and producers often reach out to Compassion & Choices for advice to ensure accuracy. In the case of Last Flight Home and Take Me Out Feet First, Compassion & Choices served as an advisor and also promoted the film to supporters, in the media, and in joint in-person and virtual events. 

Compassion & Choices is front and center in the conversation on multiple platforms. C&C staff have participated in podcasts and web series, including Fades, Fish Fries, and Funerals, a YouTube show featuring honest conversations about death in the Black community. Compassion & Choices President and CEO Kim Callinan participated in a debate with New York Times columnist Ross Douthat and has been a guest on several podcasts, including The Disagreement with Dr. Ira Byock and The Truth About Your Future with financial expert Ric Edelman. Callinan also contributed a chapter to Plan a Life You Love, a new book that illustrates the lasting impact of advocates’ stories on the end-of-life options movement (see page 7). 

Compassion & Choices works closely with healthcare providers to integrate end-of-life planning into routine medical care, ensuring that these discussions are normalized and take place before it is too late. Medical aid in dying is just one of several end-of-life options, including hospice and palliative care, better pain management, life-extending care, and voluntarily stopping eating and drinking (VSED). 

History shows that our collective stories can change hearts and minds. As more individuals assert their right to make informed decisions about their own end-of-life care, we are forging a path to meaningful changes in the availability and acceptance of the full range of end-of-life care.

CONVERSATION TIPS AND RESOURCES

Initiating conversations about your end-of-life wishes with loved ones, friends and healthcare professionals can be daunting. Compassion & Choices has a host of tools to get you started. Planning and communicating allows individuals to spend their final days with friends and family while focusing on the present. Informing loved ones of your wishes ahead of time relieves them of the burden of making decisions about your final arrangements when they are grieving your loss.

Use this checklist as your first step, and consider which of the following are appropriate for your situation:

Feature photo courtesy of iSpot.com/Jon Krause