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WORK TITLE: Caring for the Dying
WORK NOTES:
PSEUDONYM(S):
BIRTHDATE:
WEBSITE: http://inelda.org/
CITY:
STATE:
COUNTRY:
NATIONALITY:
https://therapists.psychologytoday.com/rms/name/Henry_Fersko-Weiss_LCSW_Warwick_New+York_215137 * http://inelda.org/henry-fersko-weiss/ * https://hospicefoundation.org/Continuing-Education/Experts-Talk-EOL-Care/Interview-with-Henry-Fersko-Weiss
RESEARCHER NOTES:
PERSONAL
Male.
EDUCATION:Master’s degree in Social Work.
ADDRESS
CAREER
Licensed social worker. Continuum hospice program, New York, NY; End-of-Life Doula Program, creator of first program in the United States, 2003; International End-of-Life Doula Association, executive director, 2015; Open Center’s Art of Dying Institute, faculty.
WRITINGS
SIDELIGHTS
Licensed social worker Henry Fersko-Weiss is executive director of the International End-of-Life Doula Association. He has worked in hospice care for many years and is considered a pioneer in the end-of-life care field. In 2003, he created the first End-of-Life Doula Program in the United States at a hospice in New York City. The program focuses on planning for the last days, conducting vigil, and reprocessing the dying experience with loved ones. He has built other programs based on this model in New Jersey and is on the faculty of the Open Center’s Art of Dying Institute. Fersko-Weiss has taught end-of-life Doula principles and techniques publicly at the Open Center in New York Center and at the Institute for Traditional Medicine in Toronto, Canada.
In 2017, Fersko-Weiss published Caring for the Dying: The Doula Approach to a Meaningful Death. The book introduces a new approach to death and dying that focuses on how the dying and their families can bring deep meaning and comfort to the care given at the end of life. Similar to how birth doulas embrace the whole person and experience, end-of-life doulas help the dying find meaning in their life, find comfort in their legacies, and plan for the final days. Fersko-Weiss’s approach includes around-the-clock vigil care, guidances on signs and symptoms of dying, use of aromatherapy, use of touch and guided imagery during the dying process, and processing death for the family and relieving grief. He includes stories of people and families who have gone through the process and the uplifting and life affirming feelings it gave them. He draws on his experiences as an end-of-life doula and offers example that readers can apply to their own situations.
Fersko-Weiss told an interviewer online at Hospice Foundation of America about watching a friend take birth doula classes. “As I learned about the process I loved the approach and the philosophy, so I decided to take the training myself, and noted so many similarities between the birth process and the dying process. After my training, I brought some ideas to the CEO of Continuum and she was very supportive of how we could apply this training to our hospice patients and families,” he said.
On the Conscious Dying Matters Website, Fersko-Weiss explained that he created the first end-of-life doula program in America “after watching too many unfortunate deaths of missed last breaths, words unspoken, rushed trips to the hospital for a death amidst beeping machines.” Since then, “I have witnessed beautiful, touching, even transformative moments in the process. I have also learned from the dying that there really isn’t any death, just transition,” said Fersko-Weiss.
“Our role is to walk alongside [the dying] in their journey,” said Fersko-Weiss in an article by Ellen McCarthy online at the Washington Post. He explained that during training, prospective doulas recall their own emotional pain during the death of a loved one. “If we can touch that place of angst and anguish and despair,” he said, “it may help us to be more present to other people experiencing it now.”
Fersko-Weiss “provides a clear overview of end-of-life doulas and a compelling case for their wider use in terminal care,” according to Janet Crum in Library Journal. Writing with inspiration from Zen Buddhism and with a thoughtful presence, he offers a perspective that is a “desperately needed reminder of the value of facing life’s most difficult transitions with open eyes and hearts,” noted a Publishers Weekly contributor. On the Foreword Reviews Website, Rebecca Foster declared: “This brave, reassuring book succeeds at eliminating the negativity surrounding death, reframing what seems like a passive, painful experience as an active journey that “captures the concentrated fragrance of a person’s life, its sweetest flavor.”
BIOCRIT
PERIODICALS
Library Journal, January 1, 2017, Janet Crum, review of Caring for the Dying: The Doula Approach to a Meaningful Death, p. 118.
Publishers Weekly, January 23, 2017, review of Caring for the Dying, p. 73.
ONLINE
Conscious Dying Matters, http://consciousdyingmatters.com/doula/ (November 1, 2017).
Foreword Reviews, https://www.forewordreviews.com/reviews/caring-for-the-dying/ (November 16 2017), Rebecca Foster, review of Caring for the Dying.
Hospice Foundation of America, https://hospicefoundation.org/ (November 1, 2017), author interview.
Washington Post, https://www.washingtonpost.com/ (July 22, 2016), Ellen McCarthy, “Dying Is Hard. Death Doulas Want To Help Make It Easier.”
Interview with Henry Fersko-Weiss
Interview with Henry Fersko-Weiss
End-of-Life Doula Program
What led you to the development of your End-of-Life Doula Program?
I had been working as a hospice volunteer for about four years and that work helped me understand that I was very drawn to work with those facing the end of life. At about age 50, I went to graduate school and received a Masters in Social Work and began working at a large hospice program (Continuum) in New York City. While the care provided by the team was excellent, I sometimes observed that things didn’t always work as well for patients and families during the dying process as we would hope. I heard stories from families about not being present at the death, or of unnecessary hospitalizations (which often resulted in the person dying in the hospital, which was not their wish). I think that we can’t escape the fact that, especially as caregivers are facing the last days of a loved one’s life, the situation elevates anxiety and fear, and decisions are made that they may regret later.
Around the same time, a friend was being trained as a birth doula. As I learned about the process I loved the approach and the philosophy, so I decided to take the training myself, and noted so many similarities between the birth process and the dying process. After my training, I brought some ideas to the CEO of Continuum and she was very supportive of how we could apply this training to our hospice patients and families, so I began to develop the program.
How did you begin?
At the time I was the Manager of the Volunteer department, so we reached out to our volunteers and had an immediate show of interest; our first class had about 17 volunteers respond. Once we saw such enthusiasm, we began to reach out to others whose interests might correspond, such as birthing doulas, interfaith clergy, people who specialized in energy work or other alternative treatments.
What are some of the factors you look for when recruiting volunteers for this work?
My criteria have nothing to do with their professional or healthcare background; it was to find people who really embraced this approach to end-of-life care and felt drawn to it. Most of the volunteer doulas have had some direct experience with a loved one’s death. Generally it fell into two categories; either it had been a positive experience and they want to help other families have that same experience, or perhaps their experience could have been better and this is a way to help make that happen for others.
Volunteers who are trained in the doula program represent a variety of experiences—some are active hospice volunteers in other areas of care; some come from a spiritual caregiving background; and some only participate as end-of-life doulas but do not do other hospice volunteer work.
How does the Doula program, staffed by volunteers, interact with the hospice staff/interdisciplinary team?
One way is through what we call Vigil Work; these are volunteers who attend to the patient or family as the person is dying. Other trained volunteers also do Lead Doula Work; this person serves as the initial connection to the patient and family, ideally right after admission to hospice. That person coordinates with staff and can start helping the patient and family with planning, thinking about end-of-life rituals, etc. Once the patient and family choose to have a Lead Doula involved as part of their care, that volunteer is connected to the person’s plan of care. Part of the training includes training of the staff as well, so that the IDT understands how the doula program can enhance their work.
What do you consider to be a “good” case for a doula to be involved?
Ideally, the patient and family will be open and comfortable addressing issues around death and dying. If a family has limited caregiving support, a doula can be a great addition to the experience. I have found that doulas are often requested when there is conflict among family members, and I have met patients who chose a specific hospice program because of the doula program.
Here’s a great “real life” example of how an EOL doula supported a family. As one patient was actively dying, there were at least 15—20 people in the room with her. But the doula could see that her husband needed some time alone with his wife, and was able to advocate for him and help provide that important, intimate time. Some doulas do experience some resistance from families; they feel that having a “stranger” there at such an intimate time will be disconcerting. But even if they choose not to have the doula present at the actual death, the doula can still provide the family with education about the dying process, and help think about legacy and ritual work that might precede the death. Of course the fullness of the approach can have the most impact, but even in “pieces” can provide great support to families.
What does the typical doula training entail?
The training is 22 hours in total, with Lead Doulas receiving an additional ten hours; traditional hospice volunteer training is generally around 12 hours. The difference is not just in the “intensity” or length of the training, however. In doula training, each volunteer is encouraged to explore his/her own understanding of death and dying, and also to do experiential training around ritual and legacy work. Currently I provide all of the training myself but am hoping to develop a Train the Trainer format.
How can the doula program benefit hospices?
Having trained doulas adds to the core staff that works with patients and families, especially during the active dying process. Sometimes hospice staff can be stretched thin with big caseloads and may not always be as available to families as they would like. A trained doula can provide another set of “eyes and ears,” and the staff knows they will be given important information about the patient’s situation.
In any survey we have done, we have noted that patient satisfaction has gone up when a doula has been involved. Understandably, the dying process can be filled with fear and anxiety; the family is often unprepared for the death, and sometimes not even present, even if they had wanted to be. Including an EOL doula can help avoid some of those situations. Another direct benefit is that there is not a great deal of additional cost to the organization, because doulas are all volunteers.
What are some of the other benefits that you have seen?
Ideally, the work that the doulas do will become an integral part of all patient care. For instance, legacy work is a vital component of what a doula can do with the person who is dying; incorporating that type of work into every patient’s experience can make a huge difference for them and their family.
Another organizational benefit is that the program adds to the “menu” of what a hospice can offer; as the field becomes more competitive, it can lead to referrals and even length of stay. When physicians begin to understand the experience, they may encourage their patients to participate, or to choose a hospice program that offers this additional layer of care.
Being an EOL doula is potentially very challenging work, especially for a volunteer. What sort of support do the doulas get?
When I was staffing the program (at Continuum and then at Valley Hospice), I was the primary support person. Any hospice wanting to include a doula program would need to be sure that there were understanding staff members who were there to offer psycho-emotional support. After every vigil, when a doula has stayed with a patient while he or she died, there is a “processing meeting” to both help the doula learn from the experience and process what has happened. Being part of that experience is understandably very meaningful and very intense; it’s important to be able to ensure that the volunteer doula can find a way to understand the experience but then let it go. Often times I will encourage a break between volunteering for vigils, to ensure that return to normalcy for awhile.
How do you match up the doulas to those who are dying, since obviously that is not something that can be pre-scheduled?
In one program, doulas sign up to be “on call” for specific five or six-hour shifts. At another program, one or two of the volunteers were designated as “schedulers.” As it became clear that a patient was beginning the active dying process and requesting a Vigil, these schedulers reach out to other volunteers to cover specific shifts. Often members of the IDT will also participate in part of the vigil as well. I could see this type of program being used in other settings, such as long-term care settings; it does not need to be embedded in a hospice program.
What to you are some of the critical components of a good EOL doula program?
I always emphasize planning as an integral part of the overall program. The focus is on how to make a person’s last days meaningful; that can include important elements such as the atmosphere and the environment of the space. The event is always sacred, but it must also be accessible to others who may want to participate. For instance, the doula may help the person designate a particular place that he or she will want people to sit in during the vigil; that helps set the tone that this is not an “ordinary” space or time, even if it is just an ordinary chair. With all of the stress that families are going through as someone nears the end of life, attention is not always given to what that actual dying process will be like. Having an EOL doula can help the dying person contemplate what might bring meaning at that time. Just opening up these conversations can create a new and transformative experience for the dying person and those who love him or her.
For more information, please contact Mr. Fersko-Weiss directly at hfw4589@optimum.net, or 845-988-6767.
Henry Fersko-Weiss
Executive Director
Henry Fersko-Weiss is a Licensed Clinical Social Worker, who in 2003, created the first end of life doula program in the United States at a hospice in New York City. That program, which adapted approaches and techniques from the work of birth doulas, focused on helping a dying person and family prepare for the end of life, working alongside them in the last days, and supporting and guiding them through the early period of grief.
Following the publication of an extensive front-page article on Henry’s work in the New York Times in 2006, he began teaching the end of life doula approach publicly in New York City and then Toronto, Canada. In 2015 Henry cofounded the International End Of Life Doula Association (INELDA) to bring his model of end-of-life doula care to organizations, communities, and private practitioners that serve the dying. Since starting the first end-of-life doula program Henry has directly guided and supported hundreds of people through the dying process and taught thousands of people how to do doula work.
Henry has been interviewed for many print and online publications, including the San Francisco Chronicle, the Washington Post, the Hospice Foundation of America e-magazine, Natural Awakenings, the American Funeral Director magazine, and New Jersey Caucus, a PBS television program. His book, Caring for the Dying, The Doula Approach to a Meaningful Death, was published in early 2017. Henry can be reached at henry@inelda.org.
Quote from Henry Fersko-Weiss.
We do not know, what we do not know, till we know! Knowledge is power. We have taken Henry’s end-of-life Doula class which has given us the knowledge and confidence to be present at the bedside. In addition, we promote an additional hospice training, to gain the hours and experience required.
We have also listed other programs that might be of interest.
There are many programs and we encourage you to find the one that resonates. We feel some education , whether for personal or professional use, opens the doors to being confident and present.
End-of-life Doulas, like birth Doulas, are available on a volunteer and sliding scale. Many have adjunct therapies like reiki, aromatherapy, legacy and vigil planning, counseling, etc, that they offer.
An End-of-life Doula can sit vigil during the last days and hours or come when needed.
It offers support and comfort not only to the individual but to the care-givers. This is a time, like in birth, where many emotions surface. An objective, caring, professional can make the world of difference.
Please contact us for any questions you may have.
More from Henry Fersko-Weiss
I began working with dying people as a hospice volunteer in my early forties. Over four years of volunteering I saw people approach the end of their life with clinging, fear, and sometimes grace. I was continually amazed at how open people were, often sharing with me the innermost parts of themselves. I knew I was being called to this work, to walk alongside the dying as they went through the last days of life, to help them deepen the experience and have the kind of death they wanted and deserved. So I went back to school, became a licensed clinical social worker at the age of fifty, and have devoted my life to working with the dying ever since.
Several years into my work as a hospice social worker, after watching too many unfortunate deaths of missed last breaths, words unspoken, rushed trips to the hospital for a death amidst beeping machines, I created the first end of life doula program in the U.S. From the early days of that first program to now it has been my privilege to guide and support hundreds of dying people and their families using the doula approach. I have witnessed beautiful, touching, even transformative moments in the process. I have also learned from the dying that there really isn’t any death, just transition. My hope is that I can help as many people as possible to see this same truth and to discover deep meaning as they prepare to let go of their body.
International End Of Life Doula Association
The End Of Life Doula Association (INELDA) is a 501c3 not-for-profit organization that currently has three main focuses: helping to build end of life care doula programs, training individuals to become end of life doulas, and providing a path for doulas to a professional level certification through our organization.
The INELDA Story
INELDA was co-founded in February of 2015 by Henry Fersko-Weiss and Janie Rakow. Henry, who is a social worker by training, developed the very first end-of-life doula program at a large hospice in New York City in 2003. The initial program was based on the techniques and philosophy of birth doulas. Henry adapted and translated that work into the end of life.
Since 2003 the program has continued to evolve under Henry’s leadership into the three-phase model used today. Henry left the last hospice he worked at to help as many organizations as possible to create doula programs and to teach and certify end-of-life doulas.
Henry has also been teaching the doula approach publicly at the Open Center in New York City, at the Institute for Traditional Medicine in Toronto Canada, and at the Liphe Balance Center in Weston, CT. He has acted as a doula for hundreds of people and taught thousands to do this work. In March 2017 Conari Press will publish his book: Caring for the Dying, The Doula Approach to a Meaningful Death.
Janie Rakow was one of the doulas Henry taught at a program he created in 2009 at Valley Hospice in New Jersey. Janie, who brings an extensive background in finance and business, is also a very experienced and passionate doula. Both of them hold the vision for INELDA to transform the dying process into one that holds deeper meaning and brings greater comfort to the dying and their families.
The Doula Program
INELDA works with hospices, hospitals, end-of-life care facilities, and communities to assist them in developing an end of life doula program. Each program is based on INELDA’s three-phase model that was developed over thirteen years ago and has evolved since into a very comprehensive and well-structured approach to working through the end stage of a terminal illness. That model can also be modified to fit the requirements of the organization or community in which the program will function.
The program begins with a structured life review process that helps a dying person explore the meaning of their life and identify the life lessons, values, ideas, and memories they want family and friends to hold on to after he or she is gone. In this phase of the program the dying person and family also create a plan for how the last days of life should look, sound, smell, feel, and unfold. That plan also deals with choices the dying person has around medical interventions and spells out the kind of interactions the person wants with family and caregivers.
In the second phase of the model, when the person is actively dying, the doulas hold the space for the plan the dying person and family worked out in the first phase. During this vigil time, the doulas also provide basic physical care, provide respite for caregivers, explain signs and symptoms, and use guided visualization, touch, music, reading, and ritual to offer emotional and spiritual support to the dying person and family. One of the goals of this phase of the program is to insure that the dying person isn’t alone at the end, unless he or she specifically requests that.
The last phase of the program occurs in the weeks to months after a person dies as the doulas help family reprocess the dying experience, recapture some of the more beautiful and meaningful moments they shared together, and begin their journey through grief to healing. Some of the techniques used during the vigil, such as visualization and ritual, are likely to be used in this phase as well.
Training Doulas
INELDA offers a very robust training program that teaches people the tools and techniques they need to serve the dying as doulas. Our initial training delves deeply into the doula model we use in our programs, conveys the spirit of care we promote, gives people practice with the tools and techniques we use, and allows them to explore their own experiences and beliefs around death and dying. We cover deep active listening, structured life review, legacy work, planning a vigil, guided imagery, ritual, touch, signs and symptoms, reprocessing, and grief. The training has an on-line component followed by a 22-hour live class. In 2017 we will offer at least 12 of these classes around the country. You can see where we will train and the dates by going to our website: inelda.org.
In 2017 we will also start offering an advanced training in end of life doula work. This two-day live class will go much more deeply into some of the crucial tools and techniques doulas use. It will follow the process of working with a dying person and family from the initial contact and work on meaning through the last days of life and then into the reprocessing and grief work with family afterwards. It will be mainly experiential and give doulas the chance to get direct feedback from an expert doula on how they can improve in their use of the doula tools and deepen their understanding of the doula spirit.
Certification
INELDA has established a certification program that we believe will set the standard for the emerging field of end-of-life doulas. Currently there is no outside agency or governmental organization that certifies or licenses end-of-life doulas. But INELDA believes that it is absolutely essential for the development of the field that there is a professional-level certification. So INELDA has created that program.
The INELDA certification involves taking our initial training class and then getting involved in doing the work. To become certified a doula will have to work with a number of cases and put in a certain number of hours directly serving the dying and their family. The certification also involves submitting evaluations, letters of reference, writing that reflects actual interaction with a dying person and family, evaluations from other INELDA certified doulas or professionals, journal entries, signing off on a code of ethics and a scope of practice, and finally an essay exam.
INELDA will send a certification packet to anyone who has attended one of our initial classes or was trained by an INELDA instructor at a hospice, hospital or other setting. It is open to those who are volunteer doulas as well as private practitioners. In 2017 INELDA will also start an advanced certification process for doulas that take the advanced training class.
Connecting to INELDA
INELDA offers a membership that allows people to stay in touch with the work the organization does, receive a monthly newsletter, participate in a member-only bi-monthly webinar, and receive an annual discount on one training class, and more. To join INELDA go to the website at: inelda.org. There you can also read other information about the organization and see the calendar of up-coming trainings. Please join us in the incredibly important work of transforming the dying process for people in this country and internationally.
End of Life Doula Program for Prisons
The International End of Life Doula Association (INELDA), a nonprofit 501(c)(3) corporation, has adopted as part of its mission to bring end of life doula work into prisons in the U.S. Inmates dying of a terminal illness are one of the most underserved populations in our country. According to the latest statistics on death in prison from 2014, 3,000 inmates die in state prisons from a terminal illness each year. An additional 1,000 inmates die in local jails annually. Most of these prisoners die alone. Neither their family nor the prisoners they have become close to have a chance to visit or sit at their bedside in the last days of life.
While there are 7,000 hospices in the U.S. serving the dying in every community across the country, there are only 75 hospice programs in the thousands of American prisons and jails, and only 20 are staffed with prisoner volunteers who can visit their dying fellow inmates. INELDA is dedicated to changing this tragic state of affairs in prisons. Having inmates face death alone only compounds the deprivation they experience as part of their incarceration.
End of life doulas provide emotional and spiritual support to the dying. They will attend to the dying around the clock as much as possible in the last days of life. They use guided visualization and reassuring talk to comfort the dying and help them to let go of their bodies more peacefully when the time comes. Doulas also assist the people grieving a death after it occurs.
INELDA has created end of life doula programs in hospices, hospitals, and in communities across the country—and soon internationally as well. In February of this year INELDA brought the doula approach to the California Men’s Colony, a medium security prison in San Luis Obsipo, CA. For two days two members of INELDA worked with 24 long-term inmates, helping them to learn the spirit and tools of the doula approach, so they could support and guide fellow inmates who are dying and those grieving a death. These men, who had been specially selected for the program, want to serve their fellow inmates because they care about them and because they hope that in some small way these acts of service will make amends for the pain their crimes have caused to their family and the family of victims. This is such important work and could make a tremendous difference in the lives of the men involved and those they end up serving.
INELDA was founded in 2015 to teach individuals how to do end of life doula work and to help hospices, hospitals, facilities and communities to develop programs that can ease the suffering of the dying process. In 2003 Henry Fersko-Weiss, a co-founder of INELDA, developed the first end of life doula program in the U.S. at a large hospice in New York City. His work has been written up in the New York Times, The San Francisco Chronicle, and the Washington Post, among other print and on-line media.
In March of this year Conari Press published his book: Caring for the Dying, The Doula Approach to a Meaningful Death, which has received wonderful reviews from many leaders in the healthcare field. The book describes the doula approach and tells many inspiring stories from Mr. Fersko-Weiss’s experiences utilizing the doula model of care at the end of life. Mr. Fersko-Weiss has taught thousands of people to do this work and personally worked with hundreds of dying patients. He is a licensed clinical social worker (LCSW) and has worked at a number of hospices as a social worker and manager of social services.
Fersko-Weiss, Henry. Caring for the Dying: The
Doula Approach to a Meaningful Death
Janet Crum
Library Journal.
142.1 (Jan. 1, 2017): p118.
COPYRIGHT 2017 Library Journals, LLC. A wholly owned subsidiary of Media Source, Inc. No redistribution
permitted.
http://www.libraryjournal.com/
Full Text:
* Fersko-Weiss, Henry. Caring for the Dying: The Doula Approach to a Meaningful Death. Conari. Mar. 2017. 240p.
ISBN 9781573246965. $24.95. MED
[ILLUSTRATION OMITTED]
Doulas have assisted women in childbirth for decades; now the model is being applied to the dying and their families.
Fersko-Weiss, a licensed clinical social worker and cofounder and executive director of the International End of Life
Doula Association, explains how doulas can alleviate suffering and deepen meaning during a person's final weeks of
life. He describes the tools and techniques they use--deep listening, life review, legacy projects, planning for death,
guided imagery, ritual, the death vigil, and reprocessing with the family after death'--to ensure that the dying and their
families can work through lingering issues and find peace and meaning. Experiences from the author's many years as
an end-of-life doula illustrate the concepts presented and provide examples that readers can apply and adapt to their
own situations. This book appears to be the first and only title available on end-of-life doulas. VERDICT Written for
families and caregivers, this book provides a clear overview of end-of-life doulas and a compelling case for their wider
use in terminal care. It also supplies some wonderful ideas and techniques for all readers who want to have a more
peaceful, meaningful death for themselves or their loved ones.--Janet Crum, Northern Arizona Univ. Lib., Flagstaff
Crum, Janet
Source Citation (MLA 8th
Edition)
Crum, Janet. "Fersko-Weiss, Henry. Caring for the Dying: The Doula Approach to a Meaningful Death." Library
Journal, 1 Jan. 2017, p. 118. General OneFile, go.galegroup.com/ps/i.do?
p=ITOF&sw=w&u=schlager&v=2.1&id=GALE%7CA476562430&it=r&asid=aa48223173733937e0c5a1697256f4e2.
Accessed 7 Oct. 2017.
Gale Document Number: GALE|A476562430
10/7/2017 General OneFile - Saved Articles
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Caring for the Dying: The Doula Approach to a
Meaningful Death
Publishers Weekly.
264.4 (Jan. 23, 2017): p73.
COPYRIGHT 2017 PWxyz, LLC
http://www.publishersweekly.com/
Full Text:
* Caring for the Dying: The Doula Approach to a Meaningful Death
Henry Fersko-Weiss. Conari, $24.95 (256p) ISBN 978-1-57324-696-5
[ILLUSTRATION OMITTED]
Fersko-Weiss, founder of the first End-of-Life Doula program in the U.S., defines the core features of this powerful
framework for supporting the dying and their families, modeled on the compassionate care services that birth doulas
provide. Moreover, he offers guidance for anyone hoping to engage the approaching death of a loved one with grace
and intention. With Buddhist calm and a sense of thoughtful presence, Fersko-Weiss shares the core tools doulas use to
help the dying approach "ego integrity" by reflecting, exploring meaning, and addressing unresolved conflict, while
also helping them choose the surroundings that make them feel comforted and appreciated. Approaches such as
creating a legacy project and planning the vigil can help family members process fear and allow closeness to continue
until the end. Although not structured as a guidebook, enough detail is included that families without access to a doula
could successfully use many of the ideas on their own. Warm stories of client experiences give permission to imagine a
death experienced with as much humanity as the rest of life, with profound results for everyone affected by the event.
Fersko-Weiss's perspective is a desperately needed reminder of the value of facing life's most difficult transitions with
open eyes and hearts. (Mar.)
Source Citation (MLA 8th
Edition)
"Caring for the Dying: The Doula Approach to a Meaningful Death." Publishers Weekly, 23 Jan. 2017, p. 73. General
OneFile, go.galegroup.com/ps/i.do?
p=ITOF&sw=w&u=schlager&v=2.1&id=GALE%7CA479714223&it=r&asid=9db0e3eda311530aea287181120ecc9d.
Accessed 7 Oct. 2017.
Gale Document Number: GALE|A479714223
CARING FOR THE DYING
THE DOULA APPROACH TO A MEANINGFUL DEATH
Henry Fersko-Weiss
Conari Press (Mar 1, 2017)
Hardcover $24.95 (256pp)
978-1-57324-696-5
This brave, reassuring book succeeds at eliminating the negativity surrounding death.
Henry Fersko-Weiss shares stories and strategies in his Caring for the Dying that show how doula programs remove pain and fear from the dying process and instead help the dying and their families to infuse death with ritual significance.
In 2003, social worker Fersko-Weiss created America’s first hospice-based end-of-life doula program in New York City. Just as doulas aid in childbirth, he believes they can assist the dying by fostering a nonclinical environment and encouraging people to face feelings of regret, engage in guided imagery, and leave a legacy project, like a quilt or scroll, behind. In the last days, doulas keep vigil alongside loved ones and lead rituals to inaugurate grieving.
Although Zen Buddhism inspires some of the author’s ideas, particularly around how mindfulness allows doulas to be active listeners, the book espouses no particular religious perspective and suggests secular prayers and rites. At the same time, its case studies, diverse and compassionately told, explore the place belief has in planning for life’s end: a family decides whether their grandfather should be buried in the Orthodox Jewish fashion, and through guided imagery a dying ex-priest discusses his doubts with his hometown minister.
The book holds broad appeal. It is not primarily a guide for prospective doulas—though it does give a sense of the unique challenges and rewards of the role, one still largely filled by hospice volunteers; it’s more of a companion for the dying and their families, and will also interest psychologists and anthropologists studying how we narrate the past and visualize the future.
Death can be unpredictable, yet Fersko-Weiss emphasizes being prepared. He recalls feeling guilty for not being by his father’s side as he took his last breaths. Now he teaches people to recognize physical signs that death is imminent. The dying, too, are involved in preparations: by crafting their legacy and expressing end-of-life wishes, they “regain a sense of purpose.”
This brave, reassuring book succeeds at eliminating the negativity surrounding death, reframing what seems like a passive, painful experience as an active journey that “captures the concentrated fragrance of a person’s life, its sweetest flavor.”
Beyond birthing, doulas now offer comfort to the dying
By Bruce Horovitz, Kaiser Health News
Updated 4:40 AM ET, Thu April 20, 2017
As Ellen Gutenstein lay in her bed at home, dying from lung cancer that had metastasized in her brain, a heart-wrenching Mother's Day card arrived from her granddaughter. Neither Ellen's daughter -- nor her husband -- felt they could read it to her without breaking down.
Fortunately, a volunteer from the local hospice's doula program was on hand to help the then-77-year-old resident of Ridgewood, N.J., comfortably die at home. She picked up the letter and read it with compassion.
"I'm not sure I could have done that," said Lisa Silvershein, the daughter who helped arrange a more comfortable end-of-life experience for her mom in 2014. "The doula not only made my mom's life easier -- she made our lives easier, too."
Doulas, an ancient Greek term that loosely means a woman helping another woman, have long comforted women during birthing. But the definition has broadened, and doula programs -- a combination of male and female volunteers and paid certified staff -- are increasingly helping elderly patients fulfill wishes to die at home rather than in hospitals or nursing homes.
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End-of-life doula specialists are now in at least a half-dozen states, including New York, Colorado and Texas, said Henry Fersko-Weiss, executive director of the International End of Life Doula Association, which he co-founded in 2015. A social worker with hospice experience, he first came across the idea 15 years ago, when a birth doula told him that she was also offering comfort to the dying.
"I thought to myself: Oh my God, this is exactly what we should be doing at end of life," said Fersko-Weiss, who has since authored a book, "Caring for the Dying: The Doula Approach to a Meaningful Death."
In 2003, he set up what he says was the nation's first end-of-life doula company to train people to care for the dying. Fersko-Weiss helped create the doula program at Valley Home Care in Paramus, N.J., which assisted the Gutenstein family.
The doula association trains and certifies professional end-of-life doulas. Certification requires 22 hours of classes that cost about $600 for those who hope to make a career of it. Volunteer doulas complete 18 hours of training, with costs typically paid by a sponsoring hospital or hospice.
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"Nobody should die alone," said Ellen Rand, a longtime hospice volunteer, blogger and health journalist. Finding a doula is a proactive step for families facing terminal illnesses. "I've never come across anyone who has done too much end-of-life planning -- it's usually just the opposite," she said.
The end-of-life doula movement is supported by the National Hospice and Palliative Care Organization. "As long as they go through a training process, I think they can complement the work of the hospice team really well," said John Mastrojohn III, the organization's executive vice president. "The more people there to help a patient and family the better."
While most hospice workers focus on the physical needs of the dying, doulas offer emotional and spiritual support. They often help the dying reflect on life's meaning. They conduct comforting rituals, including light touch and holding hands. They will read to patients or play favorite music. Doulas also explain signs and symptoms of dying to the family and help them know what's coming next.
"We work as a team with doulas," says Bonnie Schneider, manager of social services at Valley Home Care, part of the Valley Health System, which oversaw Gutenstein's care. Its volunteer doulas must be trained, go through criminal background checks and health screenings and offer three written references.
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Shortly after Gutenstein, a Valley Hospice volunteer, was diagnosed with incurable cancer, the hospice connected her with Fersko-Weiss.
"To be honest, we weren't sure if an end-of-life doula would work for us," said Silvershein. "But we finally decided, what the heck, let's give it a shot."
It turned out to be just what the family needed. In her final days, approximately eight different doula volunteers assisted Gutenstein and her family, with one always by her side.
"They ended up making our lives easier -- and hers," said Gutenstein's husband, Bob. "All along, the doulas helped us to know what to expect next -- which is something most of us didn't know."
This included planning for Gutenstein's final days, which the doula association refers to as "the vigil." The doulas helped create a "vigil plan," which detailed who should be in the room at her death and the sounds and smells she wanted around her.
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Early on, Gutenstein's volunteer doulas recommended that the family assemble a memory book. "My mom loved the idea," recalled Silvershein. The book featured photos, letters, writings and illustrations.
The doulas frequently read the memory book to Ellen because they saw how happy it made her.
When family needed time away from Ellen's bedside, the doulas frequently talked, read or sang to her. One doula sang Ellen's favorite song: "Over the Rainbow."
There are things end-of-life doulas can't do -- at least in most hospital or hospice settings. Because they aren't nurses, they aren't typically permitted to physically care for patients -- whether it's changing bandages or giving them medications. But in private homes, doulas and families agree on acceptable tasks, said Fersko-Weiss.
They can do light massage, or they might brush teeth and help a primary caregiver change a patient's clothes and bedding, said Fersko-Weiss. Doulas also can help caregivers reposition someone in bed or apply cold compresses if fever spikes.
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Unlike home health aides, end-of-life doulas are trained in emotional and spiritual care -- not just physical care, said Fersko-Weiss.
Perhaps the most important thing doulas did for the Gutensteins was to constantly make everyone in the room -- particularly Ellen -- more comfortable. "It was the doula who kept her positive," said Bob Gutenstein.
Doulas give family members time to sleep, which can improve their decision-making. "The last few days, the doulas were there around the clock, which was really helpful for me," said Silvershein.
The best way to find a volunteer end-of-life doula is via a patient's local hospital or hospice, said Fersko-Weiss. But volunteers typically have limited availability.
To find paid doulas, his association intends to post a list on its website with contact information for member doulas across the country. Until then, Fersko-Weiss suggested directly contacting his group's website at inelda.org.
Trained and certified non-volunteer doulas cost $40 to $100 per hour, Fersko-Weiss said. Some charge flat rates for initial visits and during a dying patient's final days, when round-the-clock vigilance is often needed. Costs for that end-stage service typically range from $1,200 to $4,000, he said.
At the moment, medical insurance does not cover paid doula services, said Fersko-Weiss. But just as some insurance companies are starting to offer partial reimbursements for birth doulas, he predicts that families may eventually receive some reimbursements for end-of-life doulas.
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Gutenstein's doulas were volunteers, and the family later showed its thanks by giving a substantial donation to the hospital's doula unit.
Knowing what they know now, said Bob Gutenstein, they would have happily paid for the services if volunteers were not available. It was, after all, the doulas who recognized and alerted both Lisa and Bob that Ellen's death was imminent.
"We wouldn't have had this confirmation without them," Silvershein said.
It gave Bob -- who had been dozing at his wife's bedside -- his final moments with his wife, which he might have otherwise missed. After the doula alerted him to Ellen's last breaths, "I reached over, and she gave me a squeeze," said Bob, "and then, she was gone."
KHN's coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation and coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation.
Dying is hard. Death doulas want to help make it easier.
By Ellen McCarthy July 22, 2016
Before he enters the room, Craig Phillips pauses for a deep exhale. “Just to let everything go,” he says. “And to remember that I’m here for them.”
Until he walks in, he won’t know whom, exactly, he’s about to see. Today it’s an elderly woman in a blue hospital gown. Eyes closed. Jaw dropped open. Breathing loud and labored, but regular.
There is a little green circle by her name on the white board in the nurses’ station. Hospice center code for “actively dying.”
“She doesn’t have anyone with her,” a nurse says. So Phillips goes, pulls a chair up to her bed and introduces himself.
“I’m not here to poke or prod you,” he says softly. “I’m just here to be with you. I’m just here to sit with you.”
The work of a death doula — Phillips’s work, now — is primarily about presence. He is there to ease the passage from this world to the next. And he knows that the most valuable thing he can offer anyone taking that most solitary of journeys is his company. So he sits, silently wishing them peace and comfort.
Especially with patients who can no longer speak, Phillips has learned to slip his hand beneath theirs, palm to palm, rather than rest it on top. This way, he says, “you get an understanding of how well wanted you are.” When his grip is returned, he knows that he is welcome.
Phillips operates alone, but he is part of a growing army of volunteers and professionals who call themselves death doulas. (Some, opposed to that term, prefer end-of-life doulas, soul midwives or transition coaches.) And like the childbirth doulas from whom they draw their name, their mandate is to assist and accompany. Their patients’ experience may be quieter, more sorrowful, but it is no less sacred. Or scary.
As the baby boomers move into retirement, fresh consideration is being given to what it means to grow old, which measures to take to treat illness and, ultimately, how we die. There’s a growing recognition among hospice workers and palliative-caregivers that pain management is not enough. That the spirit must be attended to as much as the body. And that the soon-to-be-bereaved need help along with the dying.
It’s out of this recognition that death doulas are emerging. Most say they feel almost inexplicably called to the role. And profoundly touched by it.
On a sunny spring day in Alexandria, Va., 30 women and one man sit in a windowless hotel conference room, having traveled from all over the East Coast and paid $600 to learn to serve as death doulas.
“Our role is to walk alongside [the dying] in their journey,” says Henry Fersko-Weiss, president of the International End of Life Doula Association (INELDA), one of several organizations offering certification in the field.
The weekend-long training will cover the best ways to touch a dying person, when to use aromatherapy and guided visualizations, strategies to relieve overburdened family members, how to organize a “legacy project” to help capture the patient’s life, assisting at the moment of death and helping loved ones process their grief in the weeks that follow.
On the first morning, Fersko-Weiss, a social worker who worked with hospice facilities for decades before creating an end-of-life doula program in 2003, asks each of the students to recall a death that affected them. How it smelled and looked and felt. How it shaped their concept of what constitutes a “good death.”
One woman talked about her daughter’s stillborn baby. “That was the hardest hurt I ever felt,” she said. “I didn’t understand how you could take a baby who was full-term.”
Fersko-Weiss nodded and observed that she may be able to transform her pain into something that could aid dying patients and their families. “If we can touch that place of angst and anguish and despair,” he said, “it may help us to be more present to other people experiencing it now.”
Later, the prospective doulas talk about their reasons for coming. Several had had negative experiences with the death of a close relative. A few were birth doulas who wanted to assist with the exit from, as well as the entrance into, life. One woman had suffered a brain injury and a near-death experience. All said that they wanted to be of service in a way that would make this final transition somehow better for others.
They will be called upon to fill all kinds of roles, Fersko-Weiss told them. Sometimes patients may need help with physical care; other times, families will need assistance with errands or household chores. In all cases it will be a doula’s job to listen, without judgment, to honor the experience of both the dying person and their loved ones, and to facilitate meaningful interactions between them. “As a doula, it’s important to encourage people to say everything they need to say,” Fersko-Weiss explains, “so that they don’t look back and really regret it.”
Craig Phillips’s path to end-of-life doula work wasn’t straight, but he thinks he was always inching toward it. He grew up in Wilkes-Barre, Pa., next-door to a cemetery that served as his playground. In college, he had a chance meeting with Elizabeth Kubler-Ross, the famed psychiatrist whose groundbreaking work shaped our modern understanding of death. And all through his life, Phillips has had an intense awareness of his own mortality.
At 61, he has the look and presence of a yogi, but he spent most of his adult life in the corporate world. Several years ago, his sister called, saying that her ex-husband was suffering from advanced ALS and living in a facility very close to Phillips’s Baltimore home. So Phillips went to see him. And kept going, two or three times a week, for the last 2½ years of the man’s life.
“I’d bring him flowers,” he recalls. “I'd tell him stories. I’d take oil over and rub his feet, stuff like that. Just devoted myself to him. And it was a beautiful thing.”
A man in Phillips’s running club mentioned volunteering as a death doula, so when he retired last fall, he linked up with Gilchrist Hospice Care, which serves more than 750 patients daily in the Baltimore area and established its own end-of-life doula program in December 2009. It has since grown to more than 150 volunteers.
After 20 hours of training in January, Phillips spent a morning shadowing a mentor doula at Gilchrist’s facility in Towson. “We walked into a patient’s room, and she said, ‘Isn’t this person beautiful?’ I could see that they were. And she said, ‘Yes, all my patients are beautiful,’ ” he recalls. “You walk into a room and there’s someone there with their mouth open, looking very near death. Perhaps no teeth in their mouth and a three-day beard or whatever. And I look at these souls and they’re beautiful. It’s the oddest thing. Their guard is down. They’re just who they are in their most real, beautiful state.”
Several days a week, Phillips spends time volunteering either at the Towson hospice center or at patients’ homes. He has helped long-term-care patients communicate with a letter board and even washed a dog for a family that needed assistance with the chore. On his weekly visits to an elderly man who was still alert, Phillips brought videos of the patient’s favorite big-band performances.
But with many patients, Phillips just sits, quietly meditating and sending good wishes. He tells them that they are safe. And that they are not alone. One woman was unable to speak, but when he said goodbye after three hours, “she mouthed the words ‘Thank you’ and held out her hands like I was dear to her,” he says.
The work has also produced an unintended side effect. It has pushed Phillips’s awareness of mortality even further to the forefront of his mind.
And happily so.
“The more immediacy, for me, that I have of this,” he says, “the more appreciation I have for every day, every minute.”