You may be familiar with birth doulas who help guide births and bring babies into the world. Recently there’s been a movement focusing at the other end of the lifespan: death doulas. Also called End-of-Life doulas, these professionals provide non-medical holistic care for the dying person and their family and can help guide clients with things like funeral planning, spiritual support, natural burials, documenting, reflecting, and education. Today we’re very excited to speak with Merilynne Rush, founder of The Dying Year, a local nonprofit agency that trains End-of-Life doulas in Washtenaw County.
Senior Resource Connect: If you had to give an “elevator speech” about what your organization does, how would you describe it?
Merilynne Rush: The Dying Year provides mentoring and referrals for End-of-life Doulas who provide non-medical care and support for those with serious and life-limiting illness and their family. We also provide information and consultations about Advance Care Planning for the type of healthcare one desires at end-of-life, and consultations for natural after death care, including home funeral and green burial.
SRC: Walk me through the step-by-step process. What happens when you get a phone call/referral?
MR: People reach out to me with all sorts of questions about how to be prepared for end-of-life, death, and funeral care. Often, they don’t know exactly what they are asking, but they are sick, and they are aware they should “plan ahead.” Together we figure out just what their biggest concerns are and how to get those concerns met, either through referral to another community resource or care provider, or through an educational consultation with me. I usually give them some “homework,” like making a list of questions for their healthcare provider, talking with family or friends to discuss wishes and values, or contacting a local cemetery that might offer green burial. I’ve been independently consulting about death care for a long time and know a lot about many different types of services and options, and I’m not tied to any one healthcare provider, funeral home or other agency. I’m not trying to push a particular way of doing things – I’m an information and referral source.
SRC: What organizations do you work closely with?
MR: I don’t work with any other organizations, but I have interfaced with many different types of healthcare providers, home care, palliative care and hospice care organizations, non-profits, funeral homes, cemeteries, etc. In general, end-of-life doulas work with people before they get into hospice, and they work alongside whatever care provider they have, including once they do get into hospice. We are very collaborative.
SRC: What are some things you wish the public knew about your role?
MR: It is very difficult the first time you experience death and dying. It can be so helpful to talk to others who have been through it before and who have time to sit with you and provide guidance and companionship. That is what is missing from so many types of care. We think it’s going to be our doctor who holds our hand, but in the end, that is not what they are usually comfortable doing, or even able to do for one reason or another. End-of-life doulas have time and training to provide much needed companionship, education, support and advocacy at such a challenging time.
SRC: What tips do you have for someone with a loved one that’s nearing end-of-life or might be interested in working with a death doula?
MR: Do not wait to reach out for help. It’s so much more difficult to make decisions and get what you need when you are overwhelmed. There are others who want to connect with you and are able and willing to talk honestly and knowledgably about what is happening. Most people wait for their doctor to bring up death doulas, any other type of care, or that their loved one might be dying soon, and that is sadly not what usually happens. I can’t tell you how many people I’ve talked to that told me their healthcare provider never mentioned the elephant in the room.
SRC: Can you describe how End-of-Life doulas differ from hospice care?
MR: End of Life Doulas have more time to spend with people and get involved sooner. To have a hospice volunteer, one must be in hospice, but the average hospice stay nationally is 1-2 weeks. Doulas can begin working with someone as early as initial diagnosis. They have more time each week to spend with people, and may be contacted directly, rather than having to go through the hospice organization. They provide more services and may be on-call at the end. Some services that EOLD provide may also be provided by hospice volunteers or other care providers.
Services that EOLD provide can include, but are not limited to, the following:
- Advance Care Planning
- Companionship/Emotional support
- Information about community resources
- Education about the dying process
- Helping coordinate family caregiving
- Life Review and Legacy projects
- Praying or meditating, talking about spirituality
- Vigil-ing
- Hands-on comfort measures, including comfort touch
- Breathing and relaxation, guided visualization
- Self-care assistance
- Meals
- Light housekeeping
- Organizing, sorting
- Pet/child care
- Errands
- Rides
- Respite care
- Ceremony/ritual
- Music/art
- Bereavement support
SRC: Is there anything you would like to add?
MR: You can learn more about end-of-life (death) doulas at the National End-of-life Doula Alliance and NHPCO End-of-life Doula Council. To contact me and learn about consultation or classes, please visit TheDyingYear.org. Thank you.
Thank you so much to Merilynne for shedding light on this unique resource. You can learn more about The Dying Year by visiting their website or calling them at (734) 395-9660.
