Dying Well Initiative
The Dying Well Initiative cites five trends in its 2023 overview, from end-of-life knowledge as a super power to the importance of seeking joy, gratitude, meaning and giving. Each trend includes numerous sources for more information.
Trend 1: End-of-Life Knowledge is a Super Power
Knowledge is power, and the general public is becoming more powerful with a renewed mission to educate, empower and inform about the end of life. Education is occurring in the realm of specific populations that need attention for end-of-life issues, including the LGBTQ+, rural, houseless and millennial populations. Public figures have lent their powerful social standing to visibility for end-of-life conditions and issues. In particular, palliative and hospice care education is on the rise. Jimmy Carter, Emma Heming Willis, William Shatner, Kelly Rizzo, Kirstie Alley, and Twitch, and his wife Allison Holker, have provided visibility around end-of-life issues that have led to education and awareness. Former President Jimmy Carter is being commended by healthcare workers for starting a national conversation about hospice care after initiating care according to his personal wishes in February 2023. Visibility has even led to dispelling myths and forecasting the need for younger generations to become more proactive about medical screenings (for colon cancer, stroke, heart disease, etc.) that can reduce future end-of-life interventions. There is a societal message that it is important to learn about death, and even personal value in what it can teach us about ourselves because it allows for life review and mindful presence in the moment.
Trend 2: Changing Traditions, Shifting Priorities, and Honoring Complexity: Navigating Post-COVID Death and Grief
The severe restraints associated with COVID-19 have lifted, and post-pandemic societal changes are becoming clear. For one, end-of-life care and post-death traditions have shifted. Cremation, green burial and human composting are on the rise. Traditional and innovative forms of cremation (e.g., liquid cremation) are preferred, and human composting has become legal in six states as of January 2023. End-of-life care options are changing. Multigenerational family caregiving, group homes and hospice are gaining traction, but home health care is being threatened by a tight labor market, and family caregivers are feeling overwhelmed. There is a movement toward intentional planning. People are planning their own funerals and being encouraged to develop personal end-of-life care plans. There is also a movement toward intentional memorialization; the public and lawmakers have made calls to honor the memory of those who have passed from COVID-19. Connectedly, the tone and format of funerals have shifted. A celebration of life is increasingly popular because it is informal, not restricted to a religious location, and a party-like atmosphere is becoming more prevalent.
Trend 3: Facing Death with Comfort, Confidence, and Augmented Reality: Alternative Therapeutic Approaches to End-of-Life Care
Modern medicine and technology have the ability to accomplish many great feats, yet still the end of life is inevitable. There is a new wave of alternative therapeutic approaches to end-of-life care poised to change the public relationship with augmented reality and drugs. While these therapeutic approaches are not new, “right to try” access, advocacy, and legalization are key issues moving forward. Psychedelic drugs (e.g., psilocybin, MDMA) have been shown to provide immediate and sustained relief for conditions such as PTSD, depression and anxiety through the promotion of neuroplasticity. Groups like Roots to Thrive, a nonprofit Canadian medical practice that uses psychedelics in group therapy for end-of-life patients, have arisen to assist with patient advocacy and access. Oregon became the first state in the US to issue licenses for psilocybin manufacturing in March 2023. Patients are fighting to have access to these drugs through the US federal Right to Try law and wading through the restrictions imposed by the Controlled Substances Act. Similarly, the Medical Aid in Dying (MAiD) program continues to incite much international debate and discussion, with 11 states and 10 countries having legalized the ability to access medication that would end one’s life through a doctor. Terminally ill patients desire to have autonomy over how and when they experience the end of life. Some doctors refuse to participate for moral or religious reasons and feel they are pushed into offering this option; lawsuits have arisen from doctors feeling that MAiD laws are unconstitutional. More education is needed for doctors to offer this level of care. Virtual reality, a digital environment experience once relegated to recreational use, continues to show therapeutic promise in end of life care because it contributes to pain reduction, symptom management, increased quality of life and decreased anxiety. It can also be used as a method of exploration for environments the patient has never experienced. Some developers have even used virtual reality to create “near death experience” simulations.
Trend 4: Leaning into Grief and Legacy with Creativity, Technology, and Media
Art imitates life, and grief has become a prevalent part of art. It is increasingly common to channel grief into creative outlets. Even clothing brands like Bananas Apparel have arisen as an outlet for grief. There are increased media representations of processing grief and loss, and media representations have normalized grief. Television shows and movies like Not Dead Yet, Shrinking, The Last of Us, And Just Like That, Euphoria, MTV Faces, From Scratch, Pivoting, Dead to Me, This is Us, A Million Little Things, and I’m Totally Fine allow grief to be processed through para-social relationships. Books like All My Puny Sorrows and Now Go: On Grief and Studio Ghibli have reduced feelings of isolation. Musicians and podcast hosts like Ed Sheeran, Bjork, Anderson Cooper (“All There Is”), Kelly Grosklags (“See My Grief”), Amy Choi, and Rebecca Lehrer (both of “Grief, Collected”) are giving a voice to the complex and personal nature of grief. Video games like Hindsight, Gris, The Last of Us and Spiritfarer portray the transformational nature of grief. These representations add to the visibility of grief and loss. Museum exhibits by Cara Levine and dark, gothic fashion are making sartorial statements about grief. Technology is also being used to process grief with virtual reality, apps, social media, the Metaverse and Artificial Intelligence. Tools like Augmented Eternity provide opportunities for loved ones to have a post-death connection and feel a sense of comfort in doing so. There is a desire to be remembered and reflect upon the digital legacy one wants to leave.
Trend 5: Seeking Joy, Gratitude, Meaning, and Giving as a Means of Living Longer
The world is an uncertain and stressful place. Research has indicated that experiencing joy contributes to a positive sense of wellbeing and the ability to adapt to changing circumstances. Joy is a positive emotion associated with happiness and feeling connected to others. Joy can be cultivated in many ways, including celebrating small victories (also known as “snacking on joy”) and helping others. Both have been found beneficial for physical and mental health, and lowered stress, lowered blood pressure, and increased levels of dopamine and serotonin are all benefits. Making meaning of one’s life through activities such as life review, dignity therapy, an ethical will, and Swedish death cleaning also have positive outcomes. Evoking a sense of nostalgia has a profound effect on processing grief, finding meaning, cultivating happiness, and promoting emotional healing. Brits, for example, report turning to food and childhood meals for a sense of nostalgia—and, presumably, joy.