The End of Life Doula movement may be in its earlier stages but it is a worthwhile cause. By definition End of Life Doulas provide non-medical, holistic support and comfort to the dying person and their family. Death has always been a difficult subject for many. It is a time of loss. But it is also a time of appreciation, a time of retrospection and the opportunity to share intimately with loved ones. End of Life Doulas are trained to be an integral part of the end of life process and provide essential non-medical support to a dying person and their family.
I’ve been drawn to working with death and the dying for many years. As a practicing Psychotherapist, I’ve worked with many clients whose parents were aging and dying, as well as clients who’ve had chronic illnesses themselves- all were dealing with deep-rooted fears around death. I knew there needed to be a better way to approach death and the dying process to make it less scary, and easier to access the feelings and words for. I felt that people also needed to know that they had choices in how they wanted to die- so many felt that they would die in a hospital, in pain. The first step for me was actually using the word “dying,” and I could see how liberating that was- by just changing the language alone. Another step was to find a program to train as a Death Doula and learn more about how I could use the skills I already have to help ease suffering during the end of life, for both the dying and their families.
I’m a native New Yorker, now raising my son in Westchester, New York. I searched for many months to find a training program near me that resonated with my own spirituality. The program that I kept coming back to was the Conscious Dying Institute based in Boulder.
“And like seeds dreaming beneath the snow your heart dreams of spring. Trust the dreams, for in them is hidden the gate to eternity.” -Kahlil Gibran, The Prophet
Shortly before my Grandma passed away, I was dreaming about her. In the dream, she wanted me to promise her that I would do some of the things that were important to her. The feeling cannot be described with words except that she seemed mercifully dependent upon my response.
Last summer I took the Conscious Dying Institute Doula Certificate Training in Asheville. I don’t know why I took it. I didn’t really plan on changing careers and I have no previous experience working with dying people. I just felt drawn to understand death better in a deep, personal, and positive way. I knew that I wanted to be prepared for the deaths of my 80 year old parents and aging friends and family members.
This piece isn’t dainty. Because healthcare is never dainty.
Earlier this year, my mother was hospitalized for the sudden rupture of an aneurysm in her brain. You can read about an aspect of that experience here. Last week, she came home.
Just two days after she was home, I found her out of the bed and sitting on the ground. She had wet herself. And the feeding tube that was supposed to stay in her stomach while she relearned how to swallow safely? It was next to her pillow.
My father had stepped away to the bathroom for two minutes before this happened. Fortunately, she was okay - and as a gastroenterologist, I knew what to do about the feeding tube (get a replacement into her belly fast before the hole closes)!
It’s not easy to take care of the everyday needs of someone who can’t do them herself. This is what we’ve been finding out firsthand.
So I write this to express gratitude. For all the caregivers in the hospital who looked after Mom. In our more ignorant moments, we doctors may sometimes call you “ancillary personnel.” I will never use that phrase again. You are NOT ancillary.
An old family friend, Ellen, asked if my mother and I would visit her parents, who weren’t doing well and if we could check on them. Up until a few months earlier, my mom and I were in the intense fire of tending to my dad 24/7 in the last days of his life. Life after my father’s passing had felt foreign and spacious, and we knew all too well about the lingering desire for more time with him and we wanted to make sure our friends had all the time they needed.
Life has been constantly abuzz with opportunity to give of myself. I am overflowing with absolute gratitude for the opportunity to be a part of the amazing and beautiful education and work with the Sacred Passage End of Life Doula Certificate training in Boulder. It was only months ago in September of 2017 that I began my training to become an End of Life Doula. I have cared for the dying as a CNA and was blessed to receive the opportunity to expand my training through the generous gift of a client.
Have you ever wondered, if you died next week, who would show up at your funeral; what would they say about you? A year and a half ago, we inadvertently got our first small taste of that. Alarmed at the conventional medicine choices offered for treatment of John’s advanced prostate cancer, we found options that, not covered by health insurance, were out of reach financially for us. So we asked for help. As our first group of angels flew in, John learned how many friends and family from all over the world loved him, appreciated and valued his work and wanted him to stick around! Some shared this with poetic and glowing words. Others, like an old high school friend, told him “he better get well and fast, otherwise he was gonna have to give him a good ass whoopin”.
Often while we are living the illusion that we have “everything under control” and have a game plan for keeping it all together, Life Itself Happens, and the unexpected takes you on a “Hero’s Journey” into the deep caverns of your mind, body and spirit.
Facing death, talking about it, or writing about it is uncomfortable. I’m young. I’m healthy and death seems a remote possibility right now. I am called to become an End of Life Doula and yet find this resistance to begin my homework. Like birthing or parenting, no matter how much you buy in, you still must endure the physical labor with all its uncertainty, the struggles and messiness. The curriculum with the institute is intense, and beginning my homework as a Doula means resurrecting feelings around death that I have avoided. In all the ways I could look at death, it hasn’t always been kind or welcomed, and yet it came. Pursuing my training to become an End of Life Doula is the first time that I intentionally chose death.
“Are you willing to pretend something for a minute?” asks Greg Lathrop, a local end-of-life activist. “So, let’s pretend this. March 27 will be your last day here. In this game, we know that you’re going to die March 27. Now, how’s your life? See, it’s a simple perspective shift. Perspective is just a choice. You shift the perspective just that much, and it opens a door. We’re getting somewhere. Now it’s like, ‘I hate my job,’ or ‘I’m in debt up to my eyeballs.’ What would it look like, in these last three months, to live the best three months of your life? It gives us an opportunity. It’s more than a bucket list. What’s your life’s purpose — why are you even here?”
What calls us to want to serve at someone’s bedside as an End of Life Doula? In my case it is death itself. My mother died of breast cancer one month before my seventh birthday. Although she passed with dignity and grace, I can only imagine how she must have felt on hospice knowing that she was terminally ill and would be departing at the young age of thirty-four with two children and a husband that she loved dearly. She did not have an End of Life Doula, nor did she have any rites of passage for her next journey, in this case death. Not only would my mother have benefited from having a special person to sit with her and help her with this transition, but also us kids and my father too. Perhaps becoming an End of Life Doula started a long time ago.
After being blessed with the opportunity to be a part of Phase 1 of the Sacred Passage Doula course in Vancouver, I watched several videos of Dr. Elisabeth Kubler-Ross. I came across an interview that Oprah Winfrey had done with Dr. Elisabeth that had been recorded just before Dr. Elisabeth passed on. Oprah and Dr. E spoke of 'guardian angels' and Oprah asked Dr. K-R if she believed everyone had a guardian angel.
To walk this path, I must die into this truth: . no matter how special, how loved, how young, how old, how close to me, how important, how simply regular anyone is in my dying care or circle, my call is to hold both the universal beauty and mystery of death and the celebration of life in equanimity and balance.
To walk this path, I must die into the truth of these words, this mighty concept: no matter how special, how loved, how young, how old, how close to me, how important, how simply regular anyone is in my dying care or circle, my call is to hold the both the universal beauty and mystery of death and the celebration of life in equanimity and balance.
For many years I worked in palliative care. My patients were those who had gone home to die. Some incredibly special times were shared. I was with them for the last three to twelve weeks of their lives.
People grow a lot when they are faced with their own mortality. I learnt never to underestimate someone’s capacity for growth. Some changes were phenomenal. Each experienced a variety of emotions, as expected, denial, fear, anger, remorse, more denial and eventually acceptance. Every single patient found their peace before they departed though, every one of them.
When questioned about any regrets they had or anything they would do differently, common themes surfaced again and again. Here are the most common five:
The trainings for Death Doulas that are available through institutions such as The Conscious Dying Institute are necessary. They teach attendees and give them an experience that provides them with a working knowledge of how to be present when there is loss. The attendees gain benefit because they learn about themselves and can translate what they have learned to be a utilized when others are dealing with loss.
Jerry was 61 years old. He was a tall man with pale blue eyes. His hair, although grayish, hinted at having once been blond. Finnish/Irish he was. He successfully managed a large real estate firm. He had also created a remarkable family. Jerry and Joyce had two exceptional sons, Mike, 35 and Pat, 31. Both were married and Mike had a baby girl. Both were slender and tall like Dad but they had the dark Spanish eyes of their mother. I was Jerry’s nurse.
Jerry had a history of glomerulonephritis that resulted in chronic renal failure. During the last couple of years he had been managing his own peritoneal dialysis and enjoyed the freedom this method allowed compared to hemodialysis. He came to the ICU after suffering a ruptured abdominal aortic aneurysm, which was repaired emergently.
I soon took a personal interest in Jerry and developed a privileged bond with him and his family. Jerry was in my care day after day, stretching into weeks. I worried about him on my days off and hoped that upon returning I’d find him faring well.
I recently certified with Conscious Dying Institute as a Sacred Passage Doula. Some people asked me why I took the course since I am already a registered nurse certified in Hospice and Palliative Care. I work at a fifteen bed inpatient hospice unit and have done so for over seven years. My answer is thoughtful and measured. Working in the inpatient hospice setting I feel comfortable giving medications, managing symptoms and educating the dying and their families. I am also comfortable with integrative therapies such as Healing Touch, Mindfulness, Aromatherapy, and Guided Imagery. I hold certifications in Healing Touch and Focused Awareness Meditation. And yet, I felt there was more I could learn about working with the dying and their families.
I was right. The Sacred Passage Doula program gave me tools, insights, and practical information to bring back to the hospice unit.
Since the class I have found myself even more present and aware with the dying and their families. I look forward to bringing more of the class ideas into the inpatient hospice environment.
I was terrified. Even though I knew I had received great training, even though I have worked as an in- home care provider for the disabled and knew I could handle physical care. Could I live up to the standards of the people that trained me. In part at least foolish as they had expressed nothing but confidence I me.
As a hospital and hospice chaplain, I am finding the tools and perspectives explored in the Death Doula training to be very helpful. While I have clinical perspectives that are at the forefront of my connections with patients, they are ‘rounded out’ by the existential and practical insights of the training. For example, a few days ago I was visiting with a palliative care patient in the hospital. He has a new prognosis of less than a week to live, although he has been living well with cancer for years.....
“Everything’s important and nothing really matters.”
This is the message relayed to me by my dear friend and brother before he died. A paradoxical statement creating a still point where we sit and witness. In my attempt to give him merely a glimpse of how his life is reflected in mine, I produced a song.
Composed by singer and songwriter Jay Brown [another dear friend and brother]. In his composition he carried the message a step further…
In less than two months, I will take my first steps to join the growing numbers of conscious-death practitioners in North America. I will enter this privileged position as a Sacred Passage End-of-Life Doula trained and certified, by the host of this blog, the Conscious Dying Institute.
Like those before me, I come to this rich opportunity to serve the dying and their families through life experiences that are distinctly my own. Yet, with this training, I am joining a collective of peers and future colleagues with whom I imagine I already share something quite profound: a comfort with mystery.
Creative ways of exploring death and dying in our community was the theme of the gathering where I met Grigsby and Anne a year ago. They were a notable couple: Grigsby, a tall, slender, intelligent, poised male - a Yale-trained historian and Jungian philosopher and Anne, a beautiful, eloquent and thoughtful woman – a former counselor. Recently, I had the honor of bearing witness to Grigsby’s dying process, an experience that has deeply impacted my thoughts about end-of-life care. Grigsby chose to consciously approach the end of his life with strength, equanimity, courage, honesty and mindfulness, with little medical intervention from the time of a terminal diagnosis until his death in his own home seven weeks later.
How do we communicate in our culture about the end of life?
A leading Hospice Society – “Hospice is about living. Hospice strives to bring quality of life and comfort to each patient and their family. Our successes are in helping a patient and family live fully until the end. Often patients will feel better with good pain and symptom management. Hospice is an experience of care and support, different from any other type of care.”
A leading Cancer Society – “Learning that you have advanced disease growing and not responding to treatment – may make you feel lost and afraid. At this point, you know that the cancer is not going away and the time you have left to live probably is limited. But knowing what to expect and being prepared to deal with it can enable you to get the support and care you need so you can have the very best quality of life possible.”
These expressions of how to be supportive at the end of life from both organizations is very closely aligned. At the Conscious Dying Institute, we recognize that the end of life is a special time whose depth can transcend all involved regardless of training and approach.
In last week’s blog, we explored the concept of practicing for death …. a concept we present in the first segment of the Conscious Dying Institute’s End of Life Doula Certificate program. The name of this first segment is: Conscious Dying Practices For Awakening NOW! Along with a focus on awakening, awakening to our innate healing gifts and talents, awakening to the power of bold inquiry, awakening to the gift of presence, there’s quite an emphasis on practices, and not only our own practice for death meditation featured last week.
In keeping with one of the Conscious Dying Principles developed by Founder, Tarron Estes, “Honor other’s beliefs while staying true to your own,” our death doula training program introduces practices from many traditions. Read on to lift your spirit with words and practices from other wisdom traditions.
In the first segment of the Conscious Dying Institute’s End of Life Doula Certificate program, students experience an immersion in preparing the self as a healing environment. As such, we focus on self-care and nurturance, connecting to individual healing gifts, establishing and re-establishing a sense of purpose, and deepening awareness of our own desires, wishes and beliefs about end of life….. and in particular, our own end of life. We do this through practice…..lots and lots of practice, with students participating in breath practice, communication technique practice, movement practice, and many other tools of the trade.
I’ve been asked many times what it was that sparked my fascination with all things deathly since 2012. Everyone has a different answer to this question – some begin exploring when they, because of age or perhaps a diagnosis, become face-to-face with their own mortality. Others, because they were left feeling unsettled after a bad experience with the death of a loved one. Still others intrinsically know that we need to retrieve the “old ways”, the knowledge and practice of folding death back into the arms of a family or community.
For me, it was a gradual waking up to realize that we had it wrong in North America.
To be trained and certified by the Conscious Dying Institute places you as a participant in the movement to Restore Death to its Sacred Place in the Beauty, Mystery and Celebration of Life, Create a New Wisdom-Based Culture of Care and Healing and Contribute to the Evolution of Human Consciousness.
Training represents a prime opportunity to expand your knowledge and skills. Skills that will be useful-- as we are all destined to be touched by death. Through shared learning and practice, End of Life Doulas elevate the experience of deathing. They learn to surrender and trust deeply in each moment. The rich, intensive, life-evoking training graduates receive prepares them to be supportive end of life companions who offer comforting healing care guided by what people want and need most.
My father died when I was seventeen years old. I was young and the thought that my dad would die never entered my mind. It might not have entered his and it certainly did not enter the minds of anyone who knew him. He was healthy, handsome and hearty.
When he died of a heart attack there was shock. He was forty three years old with a wife and two children at home. He passed in the middle of the night with EMTs, blinking red lights and a neighborhood that was awakened from its slumber. Walls were punched, screams were let loose and tears flowed.
I am about to celebrate my seventieth birthday and have survived my own heart attack.