Knockin' on Heaven's Door

How to Prepare for Dying

by Mo Ellis

Liza McClure, Jennifer Hamilton, and Lili Bartes are founders of Sacred Journey in Fairfield, Iowa.

When someone  suggested I write an article encouraging Iowans to address end-of-life issues (writing a living will, assigning a health proxy, etc.), I nodded, “Yes,” but was seriously thinking, “No.”

Death (yours or mine) is not something I approach bravely.

But it does strike me as odd that we put tremendous energy and resources into completely voluntary events like a wedding or childbirth, while choosing to remain silent on the one absolutely involuntary event in our lives.

Statistically, most of us have not discussed the type of medical care and personal support we want at the end of life, a talk that’s as important for our family and friends as it is for us. Current U.S. demographics show ever-decreasing links to  family members as long-term care providers. For singles with no children who rely on friends, it may be even more important to have a discussion with someone close about becoming a health care proxy and completing advanced directives.

So why do we avoid end-of-life planning? Is it our illusion of immortality, so completely understandable in our 20s but wearing thin at 50? Or is it simply that “we project our greatest fears onto death and then do everything we can to ignore it,” as the great Leonard Cohen narrates in the film The Tibetan Book of the Dead? Both Eastern and Western traditions acknowledge our natural fear of death. Exploring end-of-life issues with people who love us can easily bring us back to our traditional or religious roots.

No matter what your belief, one thing is certain. Our care choices reduce dramatically without active participation before life places us at heaven’s door.

I recently spent time with Jefferson County palliative caretakers Jennifer Hamilton, Liza McClure, and Lili Bartes. These professionals have pooled their extensive nursing backgrounds into Sacred Journey Palliative Services (sacred-journey.org). Together, they are working to transform the end-of-life experience by providing a “supportive, dignified, comfortable, and sacred environment” in their community.

Jennifer explains, “The actual needs of a person are much more complex and time consuming than just hospice care, as people work towards their transition. When people lock dying into a realm of tragedy, there’s an aversion to it, and people needing care are filed away in hospitals and nursing homes.”

But Jennifer maintains that it doesn’t have to be that way. “Our experience repeatedly is that end of life has the potential to be an elevated and at times blissful period for elders, the terminally ill, and those around them,” she says. “That’s the sacred part of this journey.”

Liza and Lili introduce me to the Five Wishes, an advance directive that has been adopted by the Veterans Administration and meets legal requirements in 42 states, including Iowa. They explain that the Five Wishes cover “who you want to make care decision for you when you can’t, the kind of medical treatment you want or don’t want, how comfortable you want to be, how you want people to treat you, and what you want your loved ones to know.”

Jennifer adds that completion of the Five Wishes is cathartic. “If people are prepared, then they can let it go. If things are not clear, then doctors become responsible and caregivers are guessing. Once medical action begins, it’s difficult to stop.  Unfinished business can make the transition harder.” In this process, Jennifer has witnessed “hearts open . . . for example, a person might choose to say goodbye to a son they haven’t spoken to in years. I’ll say, let’s just call them up, and then these big issues relax by facilitating these connections.”

With 10,000 boomers turning 65 each day starting in 2011 and continuing every single day for the next 19 years, health professionals agree that it’s never too early to complete a living will.

With 30 years’ experience as an ICU doctor, Peter Saul, on the YouTube TED talk “Let’s talk about dying,” makes us laugh when he advises us that “dying in an intensive care unit is not your top option.” Then he sobers us up with a reminder that the memory of “our passing will stay with those closest to us long after we leave.” In other words, you might want to add your voice to the conversation before the medical community takes over.

“Increasing longevity,” Dr. Saul adds, “means increasing old age, not increasing youth.” Most of us will not die suddenly but pass from the infirmities of old age or terminal illness. And 99.99 percent of doctors will use every advanced technology in their arsenal to keep us alive, unless we say, “No, thank you.” Alive is one thing, but the quality of life is another, especially when there is a serious decline in health.

Today, more of us are choosing to leave the hospital and spend our last days in a familiar, comfortable, and loving environment, complete with hospice.

There are so many resources available to inspire us, like Anita Moorjani’s book Dying To Be Me, which recounts her near-death experience that included a remission from stage 4 cancer, and The Grace in Dying, by palliative caregiver Kathleen D. Singh, a sensitive exploration of what is most helpful to know about the sacred nature and practical end-stages of life.

Top 5 Regrets of the Dying, by palliative care nurse Bronnie Ware (recently reviewed in The Guardian), discusses “common themes that surface again and again” when people at the end of life are asked about what they would do differently. A gentle prod to examine our priorities now and downsize our own potential “do over” list.

The shared insights and experience of these authors and caregivers reveal love as the deepest and last connection we have with this world. Making that connection now with family and friends to improve the quality of the end of life and ease the burden on those left behind definitely feels like the loving thing to do.

As Sogyal Rinpoches says, “The world can seem marvelously convincing until death comes along and evicts us from our hiding place.”                                       

If you have a personal story or comment you’d like to share, Jennifer, Liza, and Lili at Sacred Journey would like to hear from you. Just click on “information” at their website and add your comments under “contact us.”

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