Illinois Compassionate Quarterly Newsletter - Fall/Winter 2022
Nov 21, 2022
In the a blink of an eye, it is the start of the holiday season. Below are highlights of our recent activities and an interesting spotlight on our volunteer Susie Ruth, Illinois death doula.
Legislative Outreach: Staff and supporters have been meeting with Illinois state legislators in uncontested election races to educate them about medical aid in dying and gauge legislative support for authorizing this compassionate option in Illinois.
Action Team Spotlight: Our action teams have been hard at work throughout the summer and fall, connecting with local community colleges, places of worship, libraries, association meetings, and festivals to educate the community about end of life options and planning. Of particular note are the following activities:
Hospice Outreach: The North Suburban Action Team conducted an inventory of local hospices’ policies and practices about advance directives and voluntarily stopping eating and drinking.
Elmhurst Presbyterian Church by the Northwest Suburban Action Team
National Association of Social Workers - Three Rivers Chapter by Northwest Suburban Action Team
The Osher Lifelong Learning Institute by the Champaign-Urbana Action Team
Sinai Temple of Champaign-Urbana by the Champaign Action Team
Rock Valley College by the Northern Illinois Action Team
2022 Uniting Pride of Champaign County PrideFest by the Champaign-Urbana Action Team
Films and Books
Showing of Living and Dying: A Love Story at the Geneva Library by the Twin Rivers Action Team
Showing of Grant McGuire’s Story (statewide)
Showing of Living and Dying: A Love Story at Urbana Library by the Champaign-Urbana Action Team
The Campaign-Urbana Action Team Book Club (new), featuring Barbara Coomb Lee’s book, Finish Strong: Putting Your Priorities First at Life’s End
The Oak Park Action Team Book Club, featuring Atul Gawande’s book, Being Mortal
Bloomington-Normal NAACP Freedom Fund & Gala by the Springfield Action Team
Gene Siskel Film Center showing of Last Flight Home, tabling by the Chicago Action Team
Funeral Consumers Alliance Meeting by Champaign-Urbana Action Team
Finally, we hosted our last Train the Advocate for 2022 in September; the next opportunity to participate in this training will be in January 2023 (RSVP here).
Second Edition of Finish Strong: Putting YOUR Priorities First at Life's End Out Now
The acclaimed book by Compassion & Choices President Emerita and Senior Advisor Barbara Coombs Lee now includes a chapter on race and culture, a comprehensive index and an afterword by Kim Callinan.
Legal Advocacy Updates
Our legal team has filed a federal lawsuit in the U.S. District Court of Vermont challenging the constitutionality of the residency requirement in the current Vermont medical aid-in-dying law, and a New Jersey court has affirmed the dismissal of a suit seeking to overturn the Garden State's medical aid-in-dying law.
Spotlight: Susie Ruth, Death Doula
What brought you to the end-of-life options movement?
Growing up on a small farm, I became aware that all life is temporary, even my own. In 1985 my brother was diagnosed with HIV. Feeling helpless and scared motivated me to help others, and while volunteering for the AIDS Project, I found myself at the bedside of the dying. Since then, I have been drawn to helping people in pain and at the end of life. Today my passion is for helping people do death differently.
What is the role of a death doula?
Death doulas are non-medical professionals who guide and support the dying and their loved ones. Most doulas tend to focus on specific areas of end of life. Some, like myself, focus on advance directives and planning, legacy projects, end-of-life education, home funeral guidance, green burials, and grief recovery. Other doulas are hands-on. They enjoy working with clients directly, sitting bedside, creating space, helping people transition and being present to support the family after death.
Doulas can also create a peaceful atmosphere for the dying, handle the necessary phone calls to friends and family, make arrangements with funeral home directors, write obituaries and eulogies, etc. Hiring a doula ensures that when someone dies, their death doesn’t become an emergency but a life event for which the client and/or family can be prepared and present.
Do you often work jointly with the patient's other providers?
Since my practice focuses on planning, education, home funerals, and grief, I don’t work jointly with the medical team. Doulas who sit bedside and physically support the patient and family are an excellent resource for overworked hospice nurses. Since doulas are trained and know what to expect when someone is dying, they are excellent liaisons between the patient, family, and the medical or hospice team.
How does one find and select a doula?
People can visit NEDA, the National End of Life Doula Association, or INELDA, the International End of Life Doula Association’s website. Clients have also found me on the National Home Funeral Alliance’s website. Once you have found a doula that resonates with you, be sure to interview them. This is the time to ensure you get precisely what you want, and your doula should be able to accommodate all of your wishes.
How much do death doulas charge, and is there insurance coverage?
Since death doulas are non-medical professionals, insurance does not cover their services. They can charge anywhere from $50 to $150 per hour. Many have a sliding scale making sure that everyone can receive care. If I help a family with a home funeral, I ask for a donation letting the family decide what they can afford to pay. If I complete a detailed advance directive with a video will or a legacy project, I will charge between $200 - $1500, about $75 per hour.
The Importance of Stories
One of the most effective ways we reach lawmakers and decision makers is by sharing our stories. Read more about the personal struggles and triumphs of navigating end-of-life options from our national storytellers, and consider sharing your own personal experience.
We hope you will mark your calendars and join us for the following events (Some events require pre-registration).
End-of-Life Doulas: Demystifying the Dying Process
December 1, 5:30 p.m. - 6:30 PM CT
Midwest Train the Advocate Workshop
January 26 & 27, 9 a.m. - 1 p.m. CT
(Must attend both days)