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.
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.
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.
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.