Life is but a dream, and we can live it
Oh, we can make a love, none to compare with
Oh, will you take part in my life, my love?
That is my dream, life is but a dream
-- The Harptones BRATTLEBORO -- There is no moment that is all flat fact, as there is no moment that is all gauzy dream. Once we are no longer babies, we live in the strange, delicious friction of our imaginations, our hopes and fears, meeting and molding and scraping up against the realities of this world: Rock and water, heat and cold, birth and breathing and death.
Of life's inevitable truths, we seem to have the hardest time talking about, even thinking about, the end. We all
Not to ask, though, runs the risk of coming to the final years unprepared, shocked by the costly, hard decisions of medical care, in discord with family, buffeted by helpless suffering.
Joanna Rueter of Brattleboro and Hilary Cooke of Athens were moved to think about end-of-life preparation and care in 2010, when each, independent of the other, read "Letting Go," an article by Atul Gawande published in The New Yorker.
The article examined several end-of-life stories, from a young family facing catastrophic sudden illness to an elderly woman accepting
Joanna, a social worker and former home and business organization consultant, and Hilary, a health insurance and administration professional, were inspired by Gawande's writing, and they turned their significant attention, intelligence and experience to the topic.
Unknown to each other, despite many years of both living in Windham County, they simultaneously found particular interest in advance directives -- legal documents that convey decisions about end-of-life care ahead of time.
Circumstance led to their acquaintanceship; mutual dedication led to the co-creation of Sustainable Aging (sustainableaging.org), an organization that seeks to help people and conscientiously, even joyfully, dream about, talk about and prepare for both their later years and the end of life.
The two recently took some time from their busy days to respond to a few questions about their joint venture, their passion for informed end-of-life conversation, and their hopes for the future of advance care planning. Below is an excerpt from that much longer, deeply informed conversation.
Q: Joanna and Hilary, how did you meet and begin work on Sustainable Aging?
Joanna: We didn't know the other existed until February 2011, when we both attended a meeting on advance directives.
Everyone has their own rich experience in this work; mine began as my mother died right after I'd finished a hospice class at Smith College, and I was so grateful to know about hospice. Then, more recently, a friend who was 101 died and I sat with her during that last little bit of time. When I read the Gawande article, I really just started studying the subject, basically creating an independent college course in it!
Hilary: That meeting was part of a program sponsored by the Vermont Health and Wellness Cooperative. I was leading a discussion about advance care planning and advance directives, and their relevance not just in medicine but in the quality of people's lives.
We've all been witness to successful aging, admired people who have done their aging thing beautifully. And we have also taken note of people who have done the aging thing not so gracefully. Everybody, as Joanna said, has rich experience around aging and death and dying, and I know that all of us benefit when we take the time to talk about it.
I'm an insurance guy, a business person with a lot of experience in things like actuarial value and insurance risk, but I also understand how disruptive the absence of advance care planning is to out health care system. And how seamlessly it can work, how much richer the experience is, when people are prepared for how they want to live in the aging process, and ultimately at the end of life -- when they are informed and understand what their options are.
Q: What service do you hope to provide people with Sustainable Aging? What is your mission?
Hilary: At the core, we want to give people an opportunity for conversation.
Joanna: Yes. It's really not easy to talk about death! It's not like, ‘Oh yes, I'm going to do that this weekend.'
We put together a pilot series at the Centre Congregational Church in Brattleboro last fall, where we used the World Café model to create a safe setting where people could explore their own beliefs and experiences about end-of-life issues with others in small groups. We weren't telling people what to think. Instead, we asked vital questions, like, ‘What experience have you had with the death of a loved one?' It was amazing.
Hilary: We use very open-ended questions, in part because we don't have an agenda for what people choose for their advance care planning. We think that using the World Café model, we actually and affirmatively avoid agendas. Each decision, each end-of-life choice, ought to be unique to that individual. No two ought to look exactly the same. Each should reflect a person's own wishes based on their inner wisdom.
Joanna: One of our goals is to help people talk about it on the early side, before there is a crisis, when people can really take the time with it.
Hilary: Coming to it early can help the entire family's experience, and help make it one where there is complete accord and understanding. Sometimes I think that advance directives ought to be on that game show, ‘I've Got a Secret'! Even when it's completed and filed, nobody is aware of its existence, and when the time comes, it's difficult for everyone.
Joanna: And we have an extensive resource section on our website.
Hilary: Yes, one of the values we bring to people is being able to point them toward the really good work in this field.
Joanna: And our long range goal is to create a network of trained social workers, connected to the medical world but aren't under it, who can help people with these conversations.
Q: What are some of your short-term goals for Sustainable Aging?
Hilary: Next month, I'll start interviewing mostly medical professionals about advance care planning in the context of continuum of care. We'll put those up as podcasts on our website, and I think that use of media can only serve to help get this information and conversation out there.
Joanna: For me, I'm bound and determined as much as I can to get a blog post everyday on website! Also, I want to make sure that we share that our perspective is not only about the question, ‘How do I want to die?'
It's really about a rich last 25 years. The question is, ‘Given the reality that life is finite, what do I want to make sure I do on a daily basis? What dreams do I want to fulfill? What are my dreams?' And then, what is my dream for my death? Maybe it's to be surrounded by my family and friends and be at home. Or maybe it's something else entirely.
It's about seeing the dream right through. It's about seeing the dream to the end.
Becky Karush is a regular contributor to the Reformer. To suggest people for this column, write to her at email@example.com.