When Jimmy Carter entered hospice care, it made the national news. And it made people across the nation and here at home start thinking about what to do when it’s their time to go, too. Just talking about such decisions is hard.
Forest Park has some help.
The End of Life Options Coalition is the local action team of Compassion & Choices Action Network Illinois, which on its website describes itself this way: “The Network improves care, expands options and empowers everyone to chart their end-of-life journey. We envision a society that affirms life and accepts the inevitability of death, embraces expanded options for compassionate dying, and empowers everyone to choose end-of-life care that reflects their values, priorities, and beliefs.”
They help with healthcare equity and dementia care at the end of life, as well as in medical aid in dying.
One goal, said Roz Byrne, the Co-Chair of the Oak Park/Western Suburbs Action Team, “is to persuade the Illinois legislature to introduce and pass medical aid-in-dying legislation. It would allow mentally capable, terminally ill adults with six months or less to live to have the option to request prescription medication they can decide to take to peacefully end unbearable suffering.”
Byrne emphasized that her group does not try to dictate to anyone what they should choose regarding how they write the last chapter of their lives.
“Planning and talking about the end of life is a gift to each other,” she said. “Do you want every possible thing done medically to keep you alive as long as possible? Or, would you prefer to discontinue life-extending treatments at some point? Either answer is OK, but if we don’t talk about it and document it—the end of life can often be confusing, frustrating, and even agonizing for patients and their families.
The group began, she said, “when we showed the movie How To Die In Oregon at the main Oak Park library during Celebrating Seniors Week in May of 2019. Since then, the group has grown in the community, educating people about end-of-life care options and mobilizing support for medical aid in dying.”
Forest Park resident Maureen Rafa has been a nurse for 46 years and has had both personal and professional experience with people at the end of their lives.
“I have always supported the hospice concept,” she said.
“My parents were in hospice and died at home. I learned about hospice as a nursing student, and we had an in-service at Dr. Elizabeth Kubler Ross’ home. I have worked in different capacities in my career including home health and hospice.”
That said, she has been involved with the Oak Park/Western Suburbs Action Team IL End of Life Options Coalition for about three years, because over that nearly half-century of experience with death and dying, she has become aware that there are many people who have not had a peaceful death and have suffered.
Byrne noted that hospice and palliative care are available nationwide, but medical aid in dying is only available in 10 states and the District of Columbia.
“We should not allow your zip code to determine if you have the option to die peacefully or with needless intolerable suffering,” she said.
“There is no right or wrong answer to what medical care options someone may want, she added. “It is up to each individual.”
Renee Dushman said she got involved because of the way her husband, Stanley Dushman, died from pancreatic cancer in November 2009 at 79. The last months of his life were very difficult, she said, because of his pain and her anguish.
“I wish I could have done more to help relieve him of his suffering,” she wrote on the Compassion & Choices website.
Advocates said that it’s important to make end-of-life decisions early because, as an old adage says, “if you do not make decisions in advance about how you want your life to end, someone else will make those decisions for you.” And those decisions may not be what an individual wants.
“Ultimately,” Rafa said, “patients [should] make their health care decisions. Many do not know that they have the ability to make their own healthcare decisions. They may receive information about their care options from their medical team, but often times they don’t know how to decide what are the best care options for them because they don’t know what questions to ask. Ultimately, it is up to them to decide what care they want and when they no longer want treatment but choose comfort care and quality of life.”
The group also has screened Living and Dying: A Love Story and Bob’s Choice at the Oak Park Library during Celebrating Seniors Weeks. Trained volunteers also have done educational seminars for many groups including River Forest Library Seniors Group, Brookfield Library Seniors Group, Third Unitarian Church, Unity Temple Women’s Group, Scoville Park/Oak Park Club Residents, First United Church of Oak Park, Brookdale Oak Park, Oak Park/River Forest Rotary, Arbor West Neighbors, Senior Citizens Services Coordinating Council and Suburban Thursday Afternoon Retirees.
A spin-off book club called The Living & Dying Well Book Club meets bimonthly and discusses books with end-of-life themes.
The next Oak Park/Western Suburbs End-of-Life Options Coalition meeting is Thursday, Sept. 28th at the main Oak Park Library on Lake Street from 3:45-5 p.m. and on Zoom with this link: https://tinyurl.com/OPEoLO928.