When her agency-sponsored organization lost its funding three years ago, Amy was given a choice: shut it down or relaunch it as an independent nonprofit. With so many elderly people dependent on her volunteers, Amy did not hesitate. Through her work with The Doula Program to Accompany and Comfort, not to mention her consulting and training efforts, she has become an international advocate for end-of-life companionship.
Tell us a little about your background…
I was raised and lived most of my life in New York City. I’m married and reside in rural New Jersey now, but I still work in New York City. I’m lucky: I get the best of both worlds, the city and the country.
My childhood was filled with curiosity, fostered by school and family. My elementary school education created an environment where learning was fun and questions encouraged. We were rarely just given “the answer” but were often told to “go find out” whenever we were curious about anything. We were encouraged to discover with the other students in our class, fostering a sense of community and reinforcing the power of collaboration. We were given the sense that “anything is possible.”
My parents, lifelong learners themselves, also influenced me greatly. My father worked in advertising and my mother was a writer. Our family traveled a lot due to my father’s work; as a result, we were exposed to new environments and cultures at an early age. A small pewter metal box sat at home on the coffee table with the inscription “The world is a book and he who stays at home reads only one page.”
After graduating high school in New York City, I attended a small liberal arts college in the Midwest, where I majored in sociology. I also enjoyed many extracurricular activities, things I hadn’t been exposed to while growing up in a large city—football games and marching bands.
After college, I moved back home to New York City to look for a job, as I wasn’t ready to go to graduate school and was unsure I wanted to teach. After a brief stint in market research, and picking up some catering work and odd jobs, I reluctantly learned to type, and type fast, which allowed me a new freedom.
I worked as a receptionist at a small film production company, where I was exposed to all aspects of the business, including talent auditions, location scouting, production, and post-production. I quickly moved into a production position and became involved in story development. The “coffee break” films we produced (intended for large corporate meetings) often focused on inspiring stories—anything from the life of a comedian, a clown or a family that puts on fireworks displays. I loved to peak into a world other than my own.
After several years, I went to work for NYU’s Film School. There too, I became involved with various projects, among them curating a television show featuring student films. During this time, I continued to work on documentary film projects.
When did you think about making a change?
Increasingly, I became concerned about the film students who were struggling with the pressures of school and life, as well as the plight of the homeless in the city. I became more and more involved and joined committees and organizations to address these problems. I realized that my attention was shifting.
At this time, taking advantage of employee education discounts, I enrolled in NYU’s Certificate in Worksite Wellness Programs, which focused on work life balance and the wellbeing of employees. I set my next goal, to get my Master’s in Social Work and created a 5-year plan that took into account the financial and time constraints involved to accomplish that goal.
Six months later, after nearly 10 years with the University, I was laid off from my position at the Film School. This was also the time when I met and married my husband, Roger. Thanks to my 5-year plan, I knew what I had to do. I became the office manager for a medical practice at NYU Langone Medical Center, continuing my eligibility for tuition remission. At the age of 38, I was accepted into the NYU Silver School of Social Work. Four years later, I had completed my degree while working full time and taking advantage of tuition remission and scholarship money. I took classes at night and studied every moment I could—on buses, subways, even standing in line at the supermarket!
My first jobs as a Clinical Social Worker included working in a hospital with critically ill individuals, as a psychotherapist with older adults and, ultimately, as a social worker with a hospice service in rural New Jersey. As a Hospice Social Worker, I came to know extraordinary people who shared with me one of the most intimate times of their life. I learned that this stage of life is unique for every individual, and that for some it can be a very lonely time.
Those facing the end of their lives can become invisible; inadvertently, they may be viewed as just their illness, rather than the sum of their many life experiences. In some cases, friends and family—who are trying to cope with their own grief—withdraw due to fears that they might say or do the “wrong” thing. Others, often the elderly, have no friends and family left and are suffering from psychological, social, and spiritual isolation.
During this time, colleagues of mine were part of a pilot program, known then as The Doula to Accompany and Comfort Program (now renamed The Doula Program to Accompany and Comfort). The volunteers were called “Doulas,” a Greek word meaning “to serve” and most commonly associated with volunteer companions for women in childbirth.
The idea for the Doula Program was sparked by a woman who had been active in establishing birthing centers in New York City. In 2001, the program was initiated as a collaboration between NYU Medical Center’s Social Work Department and the Jewish Board of Family and Children’s Services intended to address the isolation of individuals facing the end of life alone. Initially, volunteers were trained to visit dying patients in the hospital and then committed to visiting them weekly once they were discharged to their homes, until the patients died. The commitment was purely to the relationship. So simple, so needed, so touching.
This was the most heartfelt, decent work and I wanted to be part of it. I enrolled in their next Doula Volunteer Training in 2003, at the age of 47. In, 2004, I became a consultant and helped train volunteers at the Doula Program while I continued to work for a hospice service, where I provided supportive counseling for patients and their families and trained hospice volunteers. In addition, I did some consulting and program development for corporations on communication and stress management. In 2006, I joined the Doula Program as a part-time Program Coordinator while continuing, part-time as well, with the hospice service.
In 2009, I left my position with the hospice service, was promoted to Assistant Director of the Doula Program, then in 2010 became the Director of the Program. In that role, I directed all aspects of the organization, including the design of the specialized curriculum, the training and supervision of the Doula volunteers, as well as national and international consultation to other hospitals and agencies interested in replicating the Doula Program.
Did you have an “aha” moment?
In 2012, a life-changing event occurred: After 12 years of operating under the auspices of a large social services agency, the Doula Program was cut from their budget as a result of the economic downturn. Because this agency funded us nearly exclusively, this meant we lost 75%+ of our funding. As the Director, I was given a choice to close the Doula Program and take a job with the agency, or to leave the agency and establish the Doula Program as an independent nonprofit organization. We had over 50 volunteers visiting dying individuals in hospitals and homes—closing the program was unfathomable. The visits with the Doula Volunteers were often the only visits these dying individuals could count on. How could we end these meaningful relationships?
It took me no time to decide; I chose to continue the work. I alerted all our volunteers and called them to a community meeting. I told them I was willing to give it a go and that our part-time program coordinator at the time was also on board. These men and women, our volunteers, all stepped forward, giving their time and professional expertise—they helped make it a reality.
What is your next act?
Three years ago, at age 56, I became the Executive Director and the Director of Education & Training for the Doula Program to Accompany and Comfort, the only nonprofit, registered 501(c)(3) organization, nationally and internationally, whose mission is to minimize the sense of isolation at the end of life and provide emotional, spiritual, and social support during the last weeks, months, or years of a person’s life.
We are the only organization in the country recruiting, screening, training, assigning, supervising, and supporting volunteers who commit to forming relationships with individuals facing the end of life alone and to visiting them until the person dies. As services and staff come and go, the Doula volunteer is often the only consistent visitor and relationship in this person’s life.
We are the only nonprofit organization not charging the individuals receiving these services or the organizations requesting these services. We do not receive government funding or insurance reimbursement for these services.
We continue to grow as the need grows. People facing life-threatening illness often experience the distress of psychological, social and spiritual isolation. We now recognize that even those individuals who have family and friends can benefit from these special relationships with Doula volunteers as family and friends struggle with grief.
I oversee every aspect of the organization. However, I am focused on our training, consultation, outreach and fundraising. I am always exploring ways we can expand and meet the growing need of individuals facing the end of life.
In our consulting work, which helps support our organization’s funding, I continue to work, as time allows, with individuals and their families who are facing the end of life. This is uncharted territory. We hesitate to share our experiences with life threatening illness, and therefore feel inadequate and unsure as to what to say and how to be; we are so afraid we will cause harm or hurt, that we will say or do the “wrong thing.” I am so happy to provide the guidance for individuals and their families facing this last stage of life. Some of the most common questions I am asked are “What do I say” and “How do I live?” and “What should we plan for?”
What I know is that, as human beings, we can do this for one another. No one should be alone; no one needs to be alone; no one should feel invisible. We are all worth knowing at all stages of our lives. After all, we are all living.
How did you establish The Doula Program as an independent nonprofit?
I had to figure out. I asked a lot of questions and enlisted the help of my friends, family, and the Doula volunteers. At the time, I didn’t even know what an EIN (employee identification number) was, let alone how to incorporate and recreate an entire infrastructure. I learned from others. We “looked it up.”
Although we lost the majority of our agency funding in 2012, several of our funders, including individual supporters, followed us out the door. Over 50 volunteers came with us. Many of these volunteers who lent their professional expertise, time, and devotion to help us get our nonprofit off the ground: They created our logo and our website, connected us to resources, provided legal expertise, and introduced us to funding opportunities. They formed committees to help guide us and to help with fundraising.
I kept inspirational messages (corny but true) in my sight: “This is a moveable feast” and “Anything is possible.” They came in handy when times were tough.
Who are the people needing your help? How do they find you?
The greatest numbers of individuals served by Doula volunteers are elderly men and women. As the community ages, the number facing life-threatening illnesses alone is startling. By 2030, there will be about 72.1 million older persons living in the United States. This is more than twice their number in 2000.
Referring organizations include social service agencies, private geriatric care manager practices, homecare, hospice, outpatient hospital services, nursing homes, and inpatient hospital palliative care services. We continually provide presentations on our services to their staff.
We are members of professional organizations serving older adults and of task forces dedicated to aging issues and critical illness. We regularly attend conferences that focus on healthcare and end of life care.
We educate both professionals and caregivers on end of life issues. I created an End of Life Conversations training workshop for professionals as well as the general community and speak on the issues of aging and dying. I provide workshops specific to the professional community as well as to the general (non-professional) community on “what to say” when speaking with individuals who have been diagnosed with a critical illness.
What kind of growth have you seen since you formed the nonprofit?
Our growth has been enormous: both the need for those facing the end of life alone, as well as the number of individuals wanting to become Doula volunteers. We have seen a 50% increase in requests for help from our volunteers in this year alone. (Some of that growth has been in the number of hospital-based Palliative Care teams requesting Doula volunteers to visit their hospitalized patients.) We also receive nearly 200 inquiries a year from individuals seeking to become Doula volunteers, compared to the 50-75 inquiries we used to get three years ago.
We have also seen an increase in requests for consulting, both nationally and internationally. I have worked on projects in the United Kingdom as well as in Canada. For example, we have provided guidance to the largest county in the UK on enriching services to their aging population. This has been a collaboration between the Medical College of the University of Central Lancashire and a charity called Age U.K. At the beginning of this project (May 2013), members of The End of Life Task Force (palliative care professionals) were involved in a week-long visit with us in New York City.
Since we are the only organization of its kind, and are based in New York City, we are receiving many inquiries to replicate our program in other locations.
What challenges do you encounter? Where do you find the strength to keep going?
The challenge is funding. We are committed to never charging any individual in need or the referring social service or healthcare organization. We do not get insurance reimbursement and we do not receive any government funding. We rely primarily on individual donations, grants, and family foundations. We hold fundraisers, and run online fundraising campaigns. Our consulting services also contribute to our income.
We want to meet the overwhelming need for Doula volunteers as the community ages. The reality is that we can only do this work with staff expansion. I so look forward to the day when we can just devote all of our time to being sure no one is alone as they face the end of their lives.
When I have thought of giving up, I imagine all those individuals who would be alone if not for a Doula Volunteer. I think about the Doula volunteers, hear their voices, know their joy and all that they give and love about being a Doula Volunteer. I see the faces of all the lives we are touching. I can’t give up. This work is about all of our lives, all of our futures. None of us should be alone; all of us are worth knowing—even at the end.
I couldn’t have continued without my friends and family. My husband has been incredibly supportive. He helped with the initial research to identify all the necessary steps to establishing an independent organization. We were under a deadline so this was crucial. He continues to help as challenges and new situations and needs arise. We are always learning.
Can you share a personal experience of working with the dying?
One person comes to mind, an older man who was diagnosed quite suddenly with an advanced life-threatening illness. His family was understandably upset and focused on bringing him home. He and his family ultimately chose hospice care. His family expressed concerns about speaking to him directly about his illness, and addressing his wishes, fearing that they might upset him. I visited him regularly over a period of several weeks beginning in the hospital and later in his home.
I remember sitting closely by his side and finding it to be such a comfortable place, a very intimate place—where he shared his fears, his joys, and his sorrows. He spoke softly as his family buzzed around him, making sure that he was comfortable; he wasn’t used to so many people in his apartment at the same time. He’d wave his hand and say, “What is all of this?” His life had changed overnight. As his illness progressed and he became breathless, we wrote notes to each other. By then, we could communicate practically in shorthand; I knew him, he knew me. One day, he looked at me, struggling for breath, and asked to plan his memorial service. I brought his family to his bedside to hear his requests.
During one of my last visits before he died, he eagerly shared a memory of when he lived in France. He described in wonderful detail a favorite meal he enjoyed on an afternoon in Paris—a fresh baguette, hard Genoa salami, strong mustard, and a bottle of wine. Even at this late stage, he was still living.
Who are your Doula volunteers? How are they trained?
Our organization engages members of the community, ordinary men and women, in forming meaningful relationships with people at the end of life. The Doula volunteers range in age from 25 to 80 and have diverse religious and cultural backgrounds. Our screening process is lengthy to determine that this is the right fit for the person interested in becoming a Doula volunteer. It is important that this opportunity meets the volunteer’s goals and availability.
Our training is unique and intimate as we only train 12-15 people at a time. The training consists of a comprehensive 8-week course, held weekly and conducted by Doula Program professional staff with expertise in end of life care. The curriculum is carefully designed and updated annually to incorporate relevant publications, research, and articles. The sessions provide information related to the dying process, tools for visiting, medical systems, and social, cultural, religious, and spiritual diversity. Learning is achieved through lecture, discussion of reading assignments, and participation in experiential exercises. Training continues year round through workshops, group meetings, and weekly supervision.
How difficult is it for these Doula volunteers to work with the dying?
Doula volunteers become very attached to their clients. These meaningful relationships enrich both their lives. The client usually does not have any family left but, even if they do, the relationship is really between the volunteer and the individual.
We are there to support the Doula volunteer throughout the relationship—some lasting months, some years. While Doula volunteers are not usually with their client at the moment the person dies, we do address loss as part of the training. We also have an annual memorial service and dinner to recognize all those who have died during the year.
After the client’s death, the Doula volunteer is asked to “rest” and not take another assignment for a while. We speak with the volunteer to talk about the experience. The majority of Doula volunteers do go on to request another assignment.
We organize several opportunities for the Doula volunteers to come together, formally and informally, during the year, always facilitated by our professional staff. The regular Doula volunteer meetings provide a chance for the Doula volunteers to share their visiting experiences.
What have you learned about yourself through your work?
I learned that I can live with uncertainty, however uncomfortable. I learned to be patient. I learned to ask for help, and about the real power of community. When you think you are alone, you are not, or don’t need to be.
I learned to take risks, taking on new roles and switching hats often. I learned further about my strengths and weaknesses. At times, I had to perform every role in the organization, which meant learning about every department.
I was reminded of childhood lessons and experiences, but buried deep inside, that “anything is possible.”
What advice do you have for women seeking reinvention in midlife?
Never say you are too old. Life is rich, and you are living. When I went for my Master’s degree in Social Work, some friends and family pointed out that I would be 40 years old when I finished. My answer was that I hoped I’d be 40 years old and at least I would also have my master’s degree!
Spend some time quietly, and close your eyes. Ask yourself, “What is it is that you really would like to be doing?” Listen and note what you discover. It seems that many women perfect their ability to tune into the needs and wants of everyone around them; they’ve practiced that. Try zoning into what you enjoy.
Talk to friends and family about what you are discovering; wonderful support may exist for your next adventure.
What about women interested in establishing a nonprofit?
Take the time to learn about the various steps it takes to establish a nonprofit. My advice is to research through your local library, such as a foundation library that can provide you with useful information. Check out resources on the Internet. Explore what fiscal sponsorship is available for your cause to get your started until your organization receives its own 501(c)(3) IRS determination for tax-deductible contributions. Speak to Directors of nonprofits for guidance. There are many resources available to nonprofits, including pro bono legal services through groups like Lawyers Alliance.
What advice do you have for those interested in end-of-life work?
I would begin as a volunteer with your local hospice service or hospital. Through this, you will learn about the various roles within interdisciplinary teams. You may find a new career or find that you love to volunteer. It’s a real opportunity to learn. There is so much being written now on end-of-life issues from so many wonderful teachers and writers.
The books that come to mind are:
Being Mortal: Medicine and What Matters in the End by Dr. Atul Gawande’s book
Kitchen Table Wisdom by Dr. Rachel Naomi Remen
Still Here: Embracing Aging, Changing, and Dying by Ram Dass
What is your vision for the future of end-of-life care and your organization, and for yourself?
It would be wonderful to see the national expansion of services like ours. I hope to increase teaching nationally and internationally and designing similar programs for healthcare and community organizations.
There are so many possibilities for replicating the Doula Program and serve people living in the community, whether in homes, nursing homes, healthcare facilities, or hospitals.
Locally, we are working to expand the Doula Volunteer program so that many more individuals can be matched with a Doula. To meet this goal, we will need to increase our own staff to provide the necessary training, as well as the necessary ongoing support and supervision. It will also be necessary to expand our development and fundraising staff to support this growth.
The country is aging. No one should face critical illness and the end of their lives alone. We all deserve to have someone want to know us throughout all stages of our life. It will also be critical that we all become more comfortable talking to our friends and loved ones who are struggling with a life threatening illness.
We need to ensure that the Doula Program prospers and will be around for all of us in the future.
I also plan to work on a book about my experiences with those who are dying.
Contact Amy Levine at firstname.lastname@example.org
Try email first, but if needed, call Amy at 212-706-0398 ext. 1