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Live with Purpose - February 28, 2023
By Erica Sadiq
–A patient’s son on their family’s Goodwin Hospice end-of-life doula experience
For most of us, when we hear someone talk about care provided by a doula, we most likely think about pregnancy and childbirth. Search for “doula” online, and you’ll find a list of links that take you to pages about this more commonly known service that doulas provide.
Fewer people know that doulas can be there for us at the end-of-life as well.
The International End-of-Life Doula Association (INELDA) describes it like this: “An end-of-life doula guides a person who is transitioning to death and their loved ones through the dying process.”
End-of-life doulas are non-medical. They aim to help families cope with death through recognizing it as a natural and important part of life. They provide emotional, spiritual and physical support at an intensely personal and crucial time – before death and through bereavement. They assist people in finding meaning, creating a legacy project and planning for how the last days will unfold. Doulas also guide and support loved ones through the last days of life and ease the suffering of grief.
End-of-life doulas meet the unique needs of the individual and family whom they are supporting. A doula’s main goal is to be present for them based on their individual and shared wishes. Doulas offer a compassionate presence as they hold space and sometimes hold a hand and comfort a patient as they have a peaceful surrender of body and spirit.
Doulas do not arrive with an exhaustive list of what they might do. Instead, they fill in as needed at the family’s request. That might be having tea on the couch next to the dying loved one, or providing guided meditation to someone with anxiety or having a conversation with hospice staff. Doulas have made guest lists, greeted visitors, provided respite, consoled daughters, sons and grandchildren and even spent the night on the floor next to the hospital bed.
End-of-life doulas work to make the difficult transition of dying or losing a loved one less chaotic, less stressful and more focused on compassion, love and meaning of the last moments of life.
Goodwin Hospice has been providing comprehensive, compassionate end-of-life care for 25 years. While we started by offering this highly specialized care to residents on our senior living campuses, in 2016 we extended our services to people in private homes and to other senior living communities and healthcare facilities. Over time, we have grown ten-fold.
Our care is rooted in the belief that every person has the right to die pain-free and with dignity. Our holistic approach to hospice integrates medical care with spiritual and other care services to meet personal needs.
With support from generous donors to the Goodwin Living Foundation, Goodwin Hospice also offers alternative therapies that are above and beyond traditional hospice care and in addition to what is typically covered by healthcare insurance. This additional support makes it possible for us to serve each person as fully as possible with benefits such as music therapy, art therapy, even massage therapy. These alternative therapies and other unique services help our Goodwin Hospice care team to have all the tools available to them to make it possible for hospice patients and families to live life fully, even as they face end of life.
To further enhance the quality of care for patients and their families, we recently added end-of-life doula care to our additional services. We offer this care in collaboration with Present for You LLC.
Goodwin Hospice is one of the only hospice programs in Northern Virginia to offer this care as a complimentary service to our patients and their families. Our hospice team works directly with Jane Euler, Co-founder and Chief Doula of Present for You, and her team of fantastic doulas to bring this care to our patients.
Jane has been an end-of-life doula for many years. She has received certificates from two training programs through INELDA, has an End-of-Life Doula Certificate from the University of Vermont, and has a Master’s Degree in Palliative Care from the University of Maryland, Baltimore. Jane believes in equal access to appropriate care that acknowledges the human side of this challenging life journey.
Barrie Magee is a community-oriented doula with ecumenical training. She works with Present for You and recently provided end-of-life doula care for a Goodwin Hospice patient and their family. Barrie shares, “to be with patients and their families when they’re most vulnerable is an honor. The grief is profound, but the human connectivity helps make it bearable.”
Goodwin Hospice believes that having an end-of-life doula present for patients and their families enhances the quality of care received. The son of a Goodwin Hospice patient, quoted above, shared this personal experience on what it was like with Barrie present at the end of his mother’s life.
When caring for a dying parent, it’s easy to get distracted by – to get lost in – the cacophony of appointments and medications and administrations. Dying is mysterious. It is also incredibly busy. It’s one of those chapters in life which, as soon as it’s over, you invariably look back on and think, ‘I wish I’d slowed down a bit. I wish I’d been more present.’
When Barrie arrived, I didn’t know what to expect from a death doula. A friend of mine is married to a birth doula. Her job made sense to me: to prepare families to welcome someone into the world. But to escort someone out of the world? To support a family in the act of saying goodbye? I had no idea what that type of support would look like, and I certainly had no conception of how helpful it would be.
As it turns out, it was immeasurably helpful. Indescribably so.
When Barrie arrived, my mother took to her immediately. They lay next to one another atop the bed, holding hands. When someone from the family wanted a private moment with my mom, Barrie would artfully recede to the background. When the space beside my mother needed filling, Barrie would flow in like warm air. I don’t mean to sound saccharine or melodramatic. On the contrary, I share this less as a poetic recollection than as a meteorological observation: sometimes warm air just knows where it’s needed.
Barrie was a treasure and genuine source of comfort in my mother’s final days and hours, not only to my mother but also to me. I’d never had a mother die before. It isn’t something that I felt prepared for. It most assuredly wasn’t something I wanted to go through. But nature being nature, and conclusions being inevitable, I had to. I’m grateful that Barrie was here for it.
Goodwin Hospice provides this unique end-of-life care offered by gifted doulas like Barrie thanks to the generous support of donors who give to the Hospice Fund of the Goodwin Living Foundation. Our hospice fund allows us to offer other therapies as well, including massage therapy, music and art therapy.
As Hospice Gifts Officer, Erica Sadiq works with the Goodwin Living Foundation and Goodwin Hospice teams to lead and grow the fundraising efforts for our Hospice Fund. Erica draws inspiration from listening to the stories of those who are willing to share their Goodwin Hospice experience. These stories in turn inspire the generosity of others so that more people can benefit from our hospice program. Erica has over 15 years of nonprofit fundraising expertise. In July 2019, she became a Certified Fund Raising Executive (CFRE). Before joining Goodwin Living, she led the development efforts of the Foundation for Physical Therapy Research (FPTR). Erica enjoys spending time outdoors, visiting parks and taking road trips with her husband and two children.