One of the greatest sources of the pervasive unrest experienced in Western culture, I believe, stems from being disconnected from ourselves, each other, and a fundamental element of our existence: how we die.
By and large, we are fearful of, unprepared for, and closed off to death and dying. One contributing factor to the fear of death arose in the 1930s when medical professionals subsumed responsibility for caring for the physical body at all stages of life. Doctors considered death a failure, antithetical to their mission to cure people from disease and degeneration, and subsequently it was deemed an enemy. Furthermore, as death was removed from the home and situated in institutions, it became less visible to the average American. Because many of us do not see, touch, smell, or know first-hand this mysterious process and ultimate termination, we are afraid of it.
Our fear is supported by the cultural myths that dying is bad, requires professional intervention, and that life should be prolonged at all costs. This is problematic because these perspectives often result in negative experiences with death and dying; as mortician, author, and death acceptance advocate Caitlin Doughty avers: “A culture that denies death is a barrier to achieving a good death.”
But a death reengagement movement is surging in the West today, led by individuals who believe we can dismantle the problematic cultural stories. The movement’s mission is to catalyze a cultural paradigm shift by engaging in thoughtful conversations and reclaiming practices and perspectives often missing from our own and others’ experiences. It encourages people to consider how, instead of demeaning and disconnecting from death, we can recognize and re-engage with it.
Quieting the Fear of Death
Two months before my mother’s best friend Gretchen died at age 64 on August 31, 2015 from pancreatic cancer, I interviewed her about the intentional and empowered approach she chose to take towards death. When first diagnosed with stage two pancreatic cancer in 2013, Gretchen underwent radiation and chemotherapy, which led her into remission. But 14 months later, the cancer returned at stage four. She sensed invasive allopathic treatment would contribute unnecessary suffering with nominal payoff, so decided to forgo it. Instead, she took on her final project: to die in a way that accorded with her beliefs and desires.
Instantaneous with her decision to let death come naturally, Gretchen realized her intention to live her remaining time with an open heart. She adopted practices and perspectives to strengthen her endurance for the unavoidable suffering that cancer entails. For example, she opted not to use the word ‘battle’: “I’m trying to treat my cancer in a loving way, to respect it.” By practicing loving-kindness with her cancer (which was of course an imperfect, human practice that included bouts of fury and frustration), Gretchen minimized the disharmony occurring in her body and even experienced moments of contentedness amidst the pain.
As a companion to the dying, senior Zen priest Robert Chodo Campbell is supporting a woman with end-stage breast cancer. Like Gretchen, she opted not to do allopathic treatment: “I don’t want all that added burden to my equanimity, to my peace of mind. I would rather live fully conscious, fully present. And so if I’m going to die in four months, I’m going to die.” Strong self-awareness led both women to establish new dynamics with their caregivers. By taking ownership of the dying process, they were able to find peace between their vision and their reality, which is often a source of tremendous pain for those who become aware of their impending mortality. They illustrate how we can trust our intuitive knowledge about how we want to live and die.
Chodo encourages everyone to inquire within about their own unique version of a good death. For Chodo, it’s as simple as being “treated with respect and dignity by other human beings.” Ideally, we are courageous and lucky enough to allow our self-awareness to steer our vision of a good death, but realistically we may not have control over everything. In the months preceding her death, Gretchen experienced a great deal of physical pain despite the palliative measures taken. “Sometimes I rail against the way my body is reacting,” she admitted. She grieved the loss of her energy, her radiance, and her capacity to focus clearly enough to paint, write poetry, and meditate. Gretchen told me that when confronting her limitations it was critical to cultivate compassion through forgiveness, patience, and tenderness in order to not exacerbate her suffering.
Accepting and Alleviating Suffering
While we cannot eliminate all of the suffering involved in dying or the eventuality of death, we can create space for the grief, anger, and denial. Cassandra Yonder, a death midwife in Nova Scotia, encourages the dying to adopt an inclusive attitude during the process: “It’s not about overcoming the fear, but acknowledging that it’s there. Denial is something we need to embrace as one component of the experience. Acceptance is not the opposite of denial, it actually includes denial.”
But what does it look like to allow all of our feelings and thoughts to be welcome parts of our dying experience? Chodo advises: “Be with everything as it is, as it arises. Everything is impermanent, even this pain, even this process. Everything’s changing—for better and for worse. Ask yourself, ‘Can I be with this? And this? And this? And this?’”
Related: Stop Telling Me I’m Going to Die
There are also measures we can take to alleviate suffering. Attuning to sensory experience cultivates mindfulness and joy. When we invest our total attention in what we see, smell, taste, hear, or feel, we can transcend the stories whirling in our minds and lessen the intensity of physical pain. This phenomenon has been observed in numerous scientific studies, including landmark research by Jon Kabat-Zinn, which showed that mindfulness-based stress reduction aided in lowering present-moment pain, negative body image, inhibition of activity by pain, mood disturbance, and psychological symptomatology, including anxiety and depression.
Gretchen spent her last weeks in life relishing sensory experiences. She was awed by “all the color and texture in the world.” She marveled while watching the full moon rising in the starlit sky from her porch, and witnessing the cloudless blue sky over lunch in the town square. “It’s easy to just focus on my body,” Gretchen noted, but it helped to “keep an eye out for the beauty.” For it is beauty that bears life’s meaning, offers a salve to suffering, and connects us to that which is greater than our human existence.
Spirituality also helps lessen suffering for many people. Zen Buddhists like Chodo take comfort in the notion that we are all connected: “It’s not just me-me-me, the small self in the world all alone, this unique body,” Chodo explains. A sense of interconnectedness can help a dying person feel less isolated in their dying. Chodo also describes the Zen Buddhist belief that “from the moment we enter this world, we’re exiting. Slowly or quickly, we’re all dying. We’re here to die. That’s our journey.”
Although not affiliated with one particular spiritual tradition, Gretchen was drawn to Eastern contemplative practices. She made her home a spiritual haven with a stone labyrinth she built in her backyard, prayer flags hung in her windows, and Buddha statues placed throughout the rooms of her house. This environment, the one in which she died, enveloped her in elements that brought her great comfort and meaning.
For years before she became ill, Gretchen practiced a form of meditation called tonglen, which involves sending wishes into the universe for everyone’s well-being. When physical pain made it too challenging for Gretchen to offer tonglen to others, she envisioned receiving tonglen from people practicing throughout the world. Despite the constitutional and existential challenges dying presented that prevented her from continuing her formal meditation practice, Gretchen felt she was “living a meditation in my day-to-day walk with cancer.” By participating consciously in this walk, taking on dying as a mindful practice, Gretchen fermented her spiritual beliefs: “Illness has grown my understanding of what’s beyond this life, this human existence, and affirmed that we are all one.” She viewed her illness as “a portal, to get a glimpse of what’s greater.” From “the crack in the ego that happens when facing something tough,” Gretchen gained insights that allowed her to see life and death with equanimity.
Related: A Meditation for Grief
Connecting Beliefs with Actions
Dying offers, and sometimes imposes, a reckoning with beliefs and values. Prior to her stage four diagnosis, Gretchen hadn’t even realized she was disconnected from her mortality. She could have remained disconnected after her diagnosis, as many people do. But instead she allowed herself to go into the scary space of questioning the unknowable. She contemplated what would happen to her essence when her body shut down: “What happens to that energy? Where does it go?”
Another way to examine your belief system is through a question Chodo often asks dying people: “What is it that you fear most right now?” A common answer is, “I don’t know what is going to happen to me when I die,” to which he responds, “Well, what would you like to have happen?” He encourages people to lean into whatever story is bringing them the most comfort. They then can allow their decisions about when, where, with whom, and with what comfort measures they die to be guided by the values underlying that story. It takes tremendous courage to explore the “big questions” as death nears, but doing so, especially with support from another, can result in empowering insights, ease underlying angst that contributes to unnecessary suffering, and help actualize your “good death.”
Death experts, individuals like Gretchen, Chodo, and Cassandra who are themselves dying or supporting those dying, have begun a vital conversation that is changing how we navigate the end of life. Their experiences cultivating compassionate self-awareness while dying, using sensory attunement and spiritual practice to accept and alleviate suffering, and clarifying beliefs and values in order to reunite them with actions may be the very practices that lead to a widespread paradigm shift. With their insights in mind, I hope we all hear and participate in more stories of mindful, accepting, and engaged encounters with death.