Caring for the Dying describes a new way to approach death and dying, and explores how the dying and their families can bring deep meaning and comfort to care at the end of life. Created by Henry Fersko-Weiss, the end-of-life doula model is adapted from the work of birth doulas. The guidance provided is well-conceived and thorough and can help a dying person, their family, and caregivers transform the dying experience from one of fear and despair into one that is uplifting and even life-affirming.
Death is like a dark and painful family secret that we try to keep hidden away. If we do think about it, we feel terribly vulnerable. Somehow we believe that not thinking about death will keep us safe, protect us from its truth and even from its inevitability.
The medical system in the United States colludes with us in our avoidance of the subject by continuing to hide death in hospitals and nursing homes. Nearly 70 percent of all deaths still occur in these sterile, depersonalized surroundings. And perhaps a quarter of those people die hooked up to tubes amid the shrill beeping of machines in the ICU. Media coverage of medical research, scientific breakthroughs, and the promise of new treatments encourages us to think that cures for the worst illnesses can occur at any time. As an extreme example of denial, a doctor in the United States established a prize of one million dollars for the person who can successfully “hack the code of life” and defeat death for good.
Our collective fear of death is so strong, our defenses so well maintained, that when a person receives a terminal diagnosis, he or she is totally unprepared and often hides within a fragile bubble of hope—hope for more time, hope for remission, hope for a breakthrough. Many doctors conspire with their patients well past the time this kind of hope makes sense by not talking about dying. They don’t know how to shift the conversation to other, more appropriate forms of hope. They want to avoid the emotional outburst that might accompany an honest assessment of where a patient is in their disease trajectory. Even in the face of obvious disease progression and functional decline, a patient and family will continue to cling to denial. They focus on symptom management, staying positive, and a heroic attempt to keep life “normal.”
All of this avoidance in accepting death leads to superficial and blunted interactions between the dying person and their loved ones. Opportunities to explore the meaning of a life go unaddressed. Emotions go unexpressed, wishes unfulfilled. Dying becomes an unrelenting downward spiral of anxiety and exhaustion as families become overwhelmed by the tasks of caregiving and doubt about doing it right. In the emptiness and excruciating sadness that follow a death, a heavy sense of guilt for holding on too long to pretense or secrecy overshadows the grief.
But dying doesn’t need to be this bleak, this soul wrenching. A new approach to dying is emerging, one that encourages a dying person and their loved ones to face their fear, break through denial, and engage in an honest, open exploration of death and dying.
This approach also goes well beyond rupturing the thick crust of denial and evasion that separates us from facing death more directly. It also encourages people to explore the meaning of their lives and to express that meaning through memory books, videos, scrolls, or decorated boxes that hold special objects or stories. It helps people to introduce a sense of sacredness into the dying process; to establish how they want the space around them to look and feel in the last days of life. It introduces the idea of designing rituals they can conduct during the last days, which will enrich the meaning of the experience. It teaches the use of guided imagery, touch, and music to bring greater comfort to everyone.
And, finally, it helps family understand the importance of reprocessing the dying experience after their loved one dies, reshaping the images and thoughts that may be haunting their waking mind and their dreams. Naturally, this approach to dying helps the patient and family to be more in control of how the dying process will unfold.
The approach I have just outlined is one that a dying person and the family can learn and incorporate into their experience in many ways. The approach was inspired by the work that birth doulas do with a woman in labor. There is now a growing field of people who guide and support the dying and their families through the labor of death. They are referred to as end-of-life doulas, death doulas, or death midwives. Like their counterparts in birth, death doulas coach a dying person and the family through the entire experience: helping them plan for the last days of life; supporting them emotionally, spiritually, and physically through the labor of dying; then helping family emotionally after the death.
My work as a death doula began in 2003, when I created the first hospice-based end-of-life doula program in the country. At the time, I had been a hospice social worker for only six years. I had entered the field in my late forties, after four years as a hospice volunteer and having returned to graduate school for my social work degree. My exposure to dying people and those in grief made me realize that I felt a calling to this work.
Over and over again as I served dying patients and their families at a large New York City hospice, I saw less-than-ideal deaths: a patient being rushed off to die in the hospital, even though they wanted to die at home; a husband or wife sleeping through the death of their spouse in the next room because they were too exhausted to stay up or didn’t recognize the symptoms of imminent death; an adult child not called to the bedside for the last breaths because a paid caregiver took it upon themselves to “protect” that child from the supposed pain of watching the death. I could go on enumerating the ways endings stole meaning and peace of mind from both the dying and their loved ones due to a poor understanding of or preparation for death, even under the enlightened approach of hospice.
As I struggled with observing these unfortunate deaths, I tried to see how I as a social worker could do my job better or help the hospice I worked for find a different way to work with the dying at the very end of their illness. It wasn’t that the hospice administration didn’t see what I saw. It wasn’t that they didn’t have the heart to change it. It was just that the structure of hospice and the logistics of caring for so many people spread across the city in their own homes just didn’t allow for the kinds of care we all wanted to provide.
During those very early days of 2003, I had a friend who decided to abandon a PhD program in anthropology and become a birth doula instead. She wanted to move from the academic career she had originally envisioned into actively working with people to transform the experience of birth. As she told me what she was learning and how she was working with women in labor, I realized that the birth doula model might also work really well at the end of life. There are so many similarities between birth and death that adapting the approaches and philosophy, even the techniques, of birth doulas to end-of-life work was relatively straightforward. Eventually, I took birth doula training myself, so I could see exactly what they learned and adapt it to working with people going through the labor of dying.
After thoroughly researching the field to see if anyone else was approaching the end of life in this way, I became convinced that I had hit on an approach that no one else had tried. I discussed my idea with the CEO of my hospice and received her blessing to begin an end-of-life doula program. The first class I taught, at the end of 2003, had seventeen people in it. In early 2004, we became the first death doulas in the United States working to guide people through the last days of their life. Since then I have worked with hundreds of people in their dying process and taught close to two thousand people how to do the work of a death doula professionally or simply to help their friends, families, or communities. The stories I tell in these pages are woven from the fabric of these years of experience.
The fullest expression of the end-of-life doula approach may be embodied in specially trained individuals. But everyone can learn from the principles and techniques of death doulas, transforming their own experience as a dying person or family caregiver. This book is dedicated to helping anyone learn the guiding principles of this new approach to dying and conveying the spirit that animates it through the stories presented. However, to become a death doula who serves dying people outside one’s family or circle of friends, it is important to take an appropriate training program. And, even for those people who only imagine using this approach with people they know, formal training can expand their knowledge and bolster their skills.
Beyond exposing you to the doula approach of dealing with death and dying, I hope this book helps you to see that death doesn’t need to terrify you. That you can prepare for the end of your life, or the life of someone you love, in a way that deepens the experience and uplifts you at the same time.