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New "Death Doulas" support families at the end of life

  • An interview with Jeri Glatter, Vice-President of the International End of Life Doula Association


    With the advent of modern medicine, 80% of Americans are dying in hospitals or in nursing homes rather than in homes. It’s no wonder we don’t know how to prepare for or cope with death -- it takes place entirely out of our field of vision. So it is only natural that we don’t know how death affects the dying, what we as the surviving friends and family are expected to do, and what our minds and bodies will experience both as they die and in the aftermath.


    GatheringUs spoke with Jeri Glatter of INELDA, the International End of Life Doula Association, to learn about death doulas, a special niche of volunteers and private practitioners that accompany the dying and their close ones as they transition at the end-of-life. Death doulas can relieve some of our fears about dying -- explaining the body’s physical transformations as someone begins to die or answering questions like ‘why doesn’t Grandpa seem to care anymore?’ They also help us take advantage of the moments we have left with our loved ones.


    As people feel increasingly disconnected from death, doulas help provide a feeling of personalization, humanization, and completion in the dying process. Glatter says, “people oftentimes don’t know what they can and can’t do with someone who's dying - whether they can touch their loved one, cuddle or climb in bed with them or how to plan a personalized memorial, oftentimes breaking with tradition.” Doulas dissolve the medical conception of death and dying that we may imagine, creating reassurance, meaning and depth for both the dying patient and the family.


    Doulas and the 3-part model


    1. Similar to midwives’ work, end-of-life doulas do their best work the sooner they get involved. A doula’s first task is to educate. They work both with the dying person to understand what they consider to be a good death, to design a vigil, explore rituals they would like to incorporate and to unearth any unfinished business they may have with loved ones so as to lighten their spirit as they face the end of life. Doulas also help educate loved ones to set expectations for the sound, smell and manifestation of active dying. With so much to do, the more time doulas have with a family, the deeper the experience and the greater the benefit.
    2. When the person begins to actively die, doulas deliver on their second task: enacting a previously discussed vigil plan, one that respects the wishes of the dying. While hospice staff provides immeasurable support to families through the end of life transition, a doula is specifically dedicated to the person who is dying and their family. Whether that means sitting vigil so that friends and family can get a few hours of sleep or some fresh air, playing soothing music or simply helping close ones process the experience.
    3. When we are face-to-face with the death of a loved one, certain moments escape us, last words or gestures are misunderstood or are simply forgotten. We can focus on a scowl we thought we saw, a slight gasp at the end that might haunt us or the emotions of missing the last words. As an outside party, doulas deliver on their third task, to gather the family to process the death, reframing anything on their conscience, checking on how they’re doing and providing referrals.


    Although they don’t generally participate in making funeral arrangements or memorials, doulas can advise on trends, processes or simply give recommendations, from their experience in accompanying other families. And with the rising interest in home funerals, green burials and home viewings, doulas sometimes function as celebrants.


    Finding your (inner) doula and expanding the conversation


    While some families learn about doula work and connect with a doula through the hospices or hospitals where their loved ones are being cared for, others find private practitioners using INELDA’s public directory. The directory lists 250 doulas in 39 states and 3 countries. The association has trained over 1,400 end-of-life doulas, many through collaborations with hospices, hospitals and other organizations. With the increasing prevalence of volunteers and these training programs, people are finding and becoming doulas at growing rates, spreading the benefits of a more human dying process from family to family. This, in turn, helps change the face of dying for generations to come. Death doulas are an important part of the good death movement taking place across the country, in their mission to educate, normalize and humanize death and dying. They help to encourage open conversation about death, relieving many fears and uncertainties, and invite discussion as part of the natural human experience.


    Find more articles on working through grief here.

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