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The Death Disruptors

I participated in the third annual End Well Symposium on December 5. The event is a TED-like forum that brings together medical professionals, entrepreneurs, designers, technologists, activists, journalists, policy makers, spiritual leaders, artists and caregivers to talk about dying and death.


You’d think that a day-long event about death would be maudlin, but in fact the meeting revealed the bright spark of innovation that guides those who are disrupting the way we die. It was inspirational, hopeful and entertaining.


Here are five things I learned from the End Well meeting:


1. Few people know what palliative care is. The medical discipline of palliative care is relatively new; it did not exist 30 years ago. Although most hospitals in the U.S. now offer palliative care, 71% of Americans don’t know what it is.

Palliative care, an umbrella term, describes care that relieves suffering for people with serious illnesses (not just those near death). Palliative treatment doesn’t focus on a cure, but can be provided in tandem with curative care. It’s holistic: it treats physical pain as well as emotional, social, practical and spiritual problems associated with illness.

Hospice care, which is more well-known, is a subset of palliative care that is provided to patients who are near the end-of-life, typically with a life expectancy of fewer than six months. Hospice care usually is not given alongside curative care; instead, hospice eases suffering to provide the patient, and family, the most peaceful death possible.


2. Choosing hospice care does not mean giving up. Meghan McCain, daughter of the late Senator John McCain, shared her personal story of loss. She noted that her brave father, a person who endured years of torture as a prisoner of war, chose hospice care in his final days because he knew it would make the end of his life better for both him and his family. Ms. McCain said she is no longer afraid of death, or talking about death. As a public figure, she has been honored to hear personal stories about loss from strangers who approach her to talk about their favorite eulogies. She is committed to talking more openly about death to help remove its social taboo.


3. Death doulas exist and can help you through your final days. Just as someone who is giving birth may choose to work with a doula or midwife, those who are facing death can now choose a death doula. The death doula provides nonmedical care that can include everything from estate planning, to what you want done with your social media after you die, to simply being present as you die to help your loved ones understand what is happening. The International End of Life Doula Association provides training and certification. End Well symposium speaker Alua Arthur recounted her journey from practicing lawyer to death doula. She provides services through her company, Going with Grace.


4. Massachusetts has one of the most vibrant, collaborative communities addressing end-of-life issues. Andrew Dreyfus, CEO of Blue Cross Blue Shield of Massachusetts, described his company’s efforts to provide more support for Advanced Care Planning and palliative care. He was also one of the creators of the Massachusetts Coalition for Serious Illness Care, a group of over 100 Massachusetts-based organizations working to transform the way we care for those who are seriously ill and dying. As I mentioned in my last post, the Coalition has created materials designed to help people start conversations about end-of-life planning.


5. A diverse group of smart people is transforming the way we die. The speakers at End Well included many palliative care medical professionals, but also country singer Tim McGraw, who serves on the board of a company that coordinates palliative care services, Yoko Sen, a sound artist who is helping medical device companies make their devices sound less annoying, and Esther Perel, a couples’ therapist who addressed the importance of understanding the sexual needs of the terminally ill. People who are dying are still living and have a wide range of normal human needs.


The symposium agenda packed almost 30 thought-provoking speakers into an 8-hour day, and I left feeling that there are many more questions to be explored and good work to be done to bring attention and transformation to this most human issue.

End Well may have focused on end-of-life, but it showcased new beginnings in the movement to change the way we live our final days.