(Vanessa is owner of Denver EOL Doula, LLC and has been trained by the International End of Life Doula Association (INELDA) to serve those who are dying and their families. She offers emotional, spiritual, and informational support to people with a terminal illness and/or in palliative or hospice care. Her focus is primarily on life review, vigil planning, legacy projects, and respite care. She also is vice president to the Colorado End-of-Life Collaborative and the facilitator of the Littleton Death Café.)
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“Why are there a zillion websites and references to being sex positive and nothing for being death positive?” — Caitlin Doughty
Eleven years ago, Los-Angeles-based mortician Caitlin Doughty posed a question on Twitter and casually named a movement that had been building for decades. But how did we get here and what does the future hold for those who want to know more about practical, peaceful, and even ecological ways to die? What’s so positive about death anyway?
Thoughtful people who have been interested in how to better care for those who are dying may know the names of Dame Cicely Saunders and Elisabeth Kubler-Ross. The work of those two women is generally acknowledged as the beginnings of the modern hospice movement in the U.K. and U.S., respectively. The first hospice in America opened in 1974. In 1978 the U.S. Department of Health, Education, and Welfare determined that “the hospice movement … is a means of providing more humane care for Americans dying of terminal illness while possibly reducing costs.” As such, it came under the auspices of Medicare in 1983 and has been a benefit available to every American citizen since then.
While the medical care of patients who were dying evolved, the cultural taboos around discussing death and dying were still firmly in place. However, in conjunction with hospice, the expansive concept of palliative care entered the mainstream in the 80’s. Simultaneously, the at-the-time-controversial notions of health care for HIV patients and the advent of AIDS activism began to draw attention. Both of these shifts contributed to more death-related conversations in the media and around kitchen tables. Books like Kubler-Ross’ On Death and Dying and Ernest Becker’s The Denial of Death continued to be popular.
In the 90’s, Dr. Jack Kevorkian’s actions prompted many to think about what a humane death looked like. During this decade we also saw the emergence of green burials and home funerals. The first conservation cemetery in the U.S. opened in 1998. Often, proponents of these “new” options were actually looking to our past cultural history as they advocated for more sustainable and communally-focused death care. The Jewish tradition has always embraced green burials (without the use of embalming and other toxic chemicals) and almost all funerals took place in the home prior to the Civil War.
As we entered the new millenium, more attention was paid to mental health initiatives and better strategies for coping with natural responses like grief. This would lay the groundwork for public gatherings called Death Café. A death café is a scheduled non-profit get-together for the purpose of talking about death over food and drink. The idea originated with the Swiss sociologist and anthropologist Bernard Crettaz, who organized the first café mortel in 2004. Jon Underwood, a U.K. web developer inspired by Crettaz’s work, popularized the idea in London in 2011, and launched the Death Cafe website. These events have since been held in many countries, including the first in the U.S. in 2012. Their stated objective is “to increase awareness of death with a view to helping people make the most of their (finite) lives.”
So when Caitlin Doughty, founder of The Order of the Good Death and the web series Ask A Mortician, wondered on social media in 2013 about the lack of death-positive websites and references, it was a way to name a novel approach to one of the last remaining taboos in our culture. It was an attempt to reframe what was possible at the end of life by simply being willing to initiate conversations about the final milestone that every single human being on the planet goes through. To be “death positive” doesn’t mean that you are happy about dying, it means that you are willing to talk about the challenges that come with being mortal. The first step towards empowerment is having the right language to discuss complicated thoughts and feelings. The informal Death Positive movement aims to increase our comfort with conversations about mortality, the afterlife, final disposition, sustainable death practices, and much more. By contrast, keeping such topics out of public discourse and permanently in the shadows is a certain way to increase fear and anxiety and ignorance.
Organizations like Final Exit Network, Compassion & Choices, and Death with Dignity can be seen as differing coalitions within the Death Positive movement. They are all concerned with the rights of individuals during their unique dying process and as such, require compassionate conversations about such scenarios.
My profession of end-of-life doula is centered on companioning folks who are nearing the last chapter in the story of their lives. I offer nonmedical emotional, spiritual, and informational support to folks who may be receiving palliative or hospice care. My job is to empower those who are dying to make the best choices for themselves and their family, based on personal beliefs, preferences, and legal options. As a death doula, I often facilitate challenging conversations for those with a terminal diagnosis as well as their families. From my perspective, these crucial discussions wouldn’t be nearly as fraught if we as a population were better informed and better equipped to talk with friends and family about what we want for ourselves at the end of our precious, but inevitably finite, lives.
Talking about death in the abstract while one is still healthy is an optimal starting point. Thoughts and opinions are not as urgent and can be explored at lower stakes. Traditionally, this has not been the norm, but I’m optimistic that our culture is changing. I host monthly death cafés and often give presentations about new options like Voluntary Stopping Eating and Drinking (VSED), and Medical Aid in Dying (MAiD; now legal in 10 states). Websites like The Conversation Project offer helpful templates for having essential conversations with resistant loved ones. Their goal is both simple and transformative: to help everyone talk about their wishes for care through the end of life, so those wishes can be understood and respected.
As a death doula, I am connected to the ancient communal practice of providing nonmedical support and guidance to dying individuals and their connected circle of family and community. I ask people to think about what it means to have a good death and try to help them achieve their own ideal. I am a resource for those who are concerned about their impact on the planet and can tell clients about more ecological options for final disposition like alkaline hydrolysis (aka water cremation; legal in 19 states) or natural organic reduction (aka composting; legal in 6 states). If one has been an environmental activist their whole life, then it wouldn’t make sense for them to be buried underground with embalming in the traditional way as that is toxic for the Earth. They would want to know about the more sustainable options now available. In this way, I help folks envision a final ending for their life story that makes sense with how they lived. To me, that is part of what it means to have a good death.
In 2024, I think everyone should strive to be death positive. The thanatologist Gail Rubin likes to say that just as talking about sex won’t make you pregnant, talking about death won’t make you dead. Death is not contagious, but it does eventually come for everyone. That’s not something we can change. What we can change, though, is our approach to what we know is coming. I can’t take away the grief and sorrow that often accompany a death, but I can help shift the focus from fear and anxiety to love and more meaning in the days, weeks, and months preceding that last breath. What lies beyond death may always remain a mystery, but what I can control is my knowledge and willingness to talk about everything related to it. That’s what makes me death positive. Becoming death positive is a way to more fully embrace life.
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Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.
Payments and donations are tax deductible to the full extent allowed by law. Final Exit Network is a 501(c)3 nonprofit organization.
Although this is a thoughtful article by someone who deals with dying in her daily work, offering wonderful suport for those approaching the time of dying, there is an incorrect mention about the start of Hospice in the U.S. The first hospice, in Connecticut, was started by a nurse, Florence S. Wald, who was Dean of the School of Nursing at Yale University. Her belief, stated in a JAMA article, Vol. 281, No. 180, was “a range of options should be available to the patient, and this should include assisted suicide.” Unfortunately, the Board of the National Hospice Association of the United States continued to follow the credo of Cicely Saunders in the U.K. which was “We neither delay or hasten dying.”
The Hemlock Society (predecessor of Final Exit Network and Compassion & Choices) was founded in 1980. Therefore, the right-to-die movement long predates the positive death movement. Of course, they both advocate for personal autonomy at the end of life. So I see them as natural allies.
While I’ve read Caitlin Doughty’s books, I missed her important connection to the “death-positive” movement. In fact, I’ve never heard of the movement. In many contexts, it is a better term than the “right to die” movement. It is broader in its scope. It can be embraced even by those who oppose choosing to end life early.
I enjoyed this article a lot. Thank you for sharing you knowledge and writing this piece.