Over the years, I have worked with many patients who are afraid of dying and of death, and with how that fear complicates both the healthy consideration of their own death as well as their grieving process when someone close dies. The fear of dying is referred to as thanatophobia after Thanatos, the personification of death in ancient Greek culture. Thanatophobia often revolves around beliefs such as that one might have a prolonged or painful death, might become weak, become a burden to others, or may be alone in one’s final days. Common fears about death itself include a fear of not existing and a fear of the unknown. In this article, I will discuss what I believe is behind these fears as well as a grassroots movement that offers a change in how we prepare for death, personally and collectively.
In our modern American society, there are a number of factors that cause people to be desensitized and alienated from death. Simply stated, most people have become separated from the natural ending to life. In the media, death is generally portrayed in an odd combination of the dramatic and the mundane, which has the effect of making death seem both tragic and frightening, and as if it is nothing unusual or special. Add to this the continued glorification of youth and unrealistic health ideation that has had the untoward effect of communicating a myth that avoidance of death might be possible -- that if you just jog and eat right, you will be “youthful” forever. This has been causing a kind of psychological disconnect from natural parts of the human experience and subtly reinforces the personal and collective fear of death.
Alongside this, most of us do not personally participate in and experience the full, rich process of dying and death in our lives because of the medicalization of the dying process in our country. Many people (physicians and patients alike) are entrained to overly rely on technology, and to regard death as the enemy instead of as the organic final stage of life. In fact, even calling the dying person a “patient” implies that there is something medically wrong taking place. Because of this cultural bias, the end-of-life stage is generally handled by professional strangers in institutions rather than in the intimacy of our homes and among loved ones. Many people go through the last years of their lives in nursing homes, dying there or in hospitals; while those who are closest to the dying friend or relative lose the opportunity to participate in this stage of life with them, and to personally gain familiarity and comfort with the passage.
The effect of these cultural norms is that we have been taught to lean towards denial and avoidance when it comes to the topic of death. Though there can even be stigma to talking about it in our society, this is not the norm in other cultures around the globe and historically it was not always like this in America either. At the turn of the 20th century, many homes contained four or more generations living together. Elders were not separated from younger segments of families, and so children witnessed the care of illness, natural human decline, and how family members coped with loss together. The natural circle of life and death was witnessed and normalized.
As the stages of natural decline moved out to the periphery of most modern American families, there was a decline in such rituals as death beds, doctor home visits, and last goodbyes. Unfortunately, very few people these days come to the death process prepared. However, as more people of the Baby Boomer generation seek an experience of dying and death that is different from that of their parents, they have begun to consider the alternatives now available. For example, there has been increased interest in “end-of-life doulas” (also called death doulas or death midwives). Doula is a Greek word that means “a woman in service” and is basically a non-medical support person, similar to the non-medical role of a chaplain. An end-of-life doula can provide support, comfort, and peace to individuals as they die by creating safe space and contributing educated guidance and care through such things as the holistic healing arts, meditation, art therapy, and spiritual support.
This is true with hospice as well. The “hospice movement” began in the 1960s and has contributed benefits such as that death can be discussed openly, related psychological issues can be addressed directly, families can gain assistance finding closure, and the individuals at the end-of-life stage can receive guidance on taking care of final needs and wishes. A colleague and friend of mine, Dr. Adithi Sethi-Brown, is a hospice and palliative care physician in Asheville, North Carolina and the Executive Director of the Center for Conscious Living and Dying. Dr. Sethi-Brown is emerging as an important voice in shifting our culture’s understanding and approach to dying, death, and bereavement. In her work with institutional hospice care over the past decade, she has witnessed the continued medicalization of death. Unfortunately, 70% of hospice care is now handled by for-profit companies, instituting a corporate approach to the dying process that is focused on documentation, paperwork for reimbursement, and filling empty beds. The pressure of this can leave staff and caretakers feeling rushed and disconnected from the social and personal aspects of the end-of-life experience taking place. Dr. Sethi-Brown believes hospice is a wonderful and necessary support system but that there is work to be done to fill in its shortcomings. Concerns such as that few people want to end up living isolated, living in a nursing home, or dying alone in an institution are issues that hospice alone cannot address. Creativity will be needed to come up with different models for care and better preparations for death.
So, how could individuals themselves be better prepared? And how might living include a healthier regard for life’s natural ending? Personally, I wonder if much of the fear stems from the fact that most people are not engaged in the experience and lack knowledge of how to be present and participate.
Eastern traditions such as Hinduism and Buddhism, as well as various indigenous and shamanic traditions, have explicit teachings that give guidance for the conscious and graceful passage from life. There is now a grassroots movement in our own Western culture called “conscious dying,” which is a thoughtful approach to better serve each individual’s dying process as well as the experiences of that person’s loved ones. Conscious dying involves developing an acceptance of death and a sense of presence through the process. In other words, the person dying and the people surrounding that person are attentive to all aspects of the experience, personal and shared, and address concerns and needs while embracing what is naturally occurring. It is a way to participate in the dying process that offers an opportunity to become more present and loving in life. This contemplative approach can be initiated by thinking about the death passage you would want and letting that inform your choices around how you are currently living your life. You can start by asking yourself several questions:
If I had only three months to live, what would be important to me spiritually, emotionally, physically, financially, and so on?
What do I still need to do or say for closure in my own life?
Do I want to die at home, in a hospital, or in another setting?
Are there any rituals or elements that are special to me that I want included?
What medical procedures would I accept or decline?
Whom do I want to be at my side?
What relationships have I cultivated or need to cultivate in preparation for my final days?
Have I made my wishes known?
You may be surprised to learn there are alternatives to the way your parents or grandparents spent the final days of their lives. But with consideration and advanced planning, there can be rituals, celebrations, music, creation of sacred space, a home funeral, and any other elements that make this time of life meaningful and rich for you and those who are present with you.
I, myself, first assisted with a conscious death in 2013 when another friend of mine (I will call her Lillian) was in the final months of her life. Lillian led an amazing life as a musician, author, and teacher who inspired thousands of people all over the world. After both Western conventional medicine and alternative approaches were unable to resolve fatal breast cancer, she turned to actively planning her final days by enrolling in a hospice program and making her wishes known to family and friends who would lovingly carry them out. During these last months, we would get together at Lillian’s home on a regular basis for serene and dignified “end-of-life circles,” bringing her favorite Southern comfort foods, doing healing meditations, talking, and joining in with her treasured Qigong practice. She decided to have her memorial service before she passed away, coinciding with her birthday in order to celebrate with as many individuals with whom she had connected as possible. Three hundred people attended this gathering at a holistic retreat center -- and she was alive and present, able to soak it all in. She contributed her gentle voice, laughter, and her gifted drumming. The ritual that I remember the most was when all 300 of us simultaneously repeated “I love you” over and over to Lillian for a full two minutes. I still carry that impactful experience with me. When Lillian passed away two months later, she died in her home. There was a home-based funeral, and her body was kept undisturbed in her home for three days like in a traditional home wake. Though some people may look at this as archaic or morbid, I found it to be healing and intimate. It united loved ones in a sense of community and devotion, and gave everyone time and space to be supported through their grief in a non-rushed way.
Death is a universal, human experience and it is not too late for us as a culture to recover the traditional acceptance of death as a very important and meaningful part of our lives. It is a conversation that belongs to all of us and by having that conversation, we can reframe or even rebrand death from seeming scary, desolate, or bleak to reimagining it as straightforward, noble, and peaceful. And while there is no single pathway prescribed for consciously dying, there are people ready and willing to assist with whatever an individual’s chosen pathway may be.