“What do you think?”
“I don’t know. What do you think?”
So the conversation went after my elderly parents moved from Pennsylvania to Virginia, 250 miles away. The question they were debating: When you die, do you want to be buried in Pennsylvania or Virginia? They had prepaid cemetery plots at a veterans’ cemetery in Pennsylvania.
As children of the Great Depression, they usually let their frugality and common sense guide their decisions. But this one wasn’t so easy. The dilemma didn’t concern the additional cost, but logistics—having a spouse age 90+ attend a funeral many miles away—as well as the significance of a final resting place. To try to help solve my parents’ dilemma, I posed the question to my sister and brother. Neither had a definitive opinion. Finally my brother said, “Well, for some people, it’s important where they’re buried.” So I chose the easy answer—do nothing until the time comes.
But doing nothing about end-of-life decisions can deny us and our loved ones important choices. Fortunately, years earlier I’d had conversations with my parents about end-of-life care and the importance of completing living wills and healthcare power-of-attorney declarations. Ironically, many people urge others to fill out these documents but don’t let family members know their own end-of-life wishes.
When you ask patients if they have an advance directive, do you do it as a “check the box” activity, or do you use it as an opportunity to educate them about how important these documents can be if they become unable to express their wishes? Many adults through middle age don’t complete advance directives because they believe they’re too young to plan for death. Our society is conflicted about death and dying. We say we want to die at home, yet more people die in hospitals. We want caregivers to be honest with us if we’re dying, but most people don’t discuss end-of-life concerns with their own doctors. We want to be free of pain, but take pain medications sparingly, fearing addiction.
Recently, I facilitated a discussion for my local hospice after a screening of the film, “Consider the Conversation: A Documentary on a Taboo Subject” (www.considertheconversation.org). The film stimulated contemplation and emotions by showing stories of courage in older adults and incurably ill persons who were slowly being robbed of health and hope. A common thread was the gift of time to plan for death, both for the one who must give up control of a once-robust life and those grieving the inevitable loss of their loved one.
Difficult decisions surrounding death can tear families apart and create unwarranted grief for those left behind. In the absence of written information, a family’s wishes may overrule a dying person’s spoken words. Families may choose body-ravaging treatments that amplify suffering despite medical advice that such interventions are futile. They are buying time, holding out for a miracle, while their loved one’s quality of life withers.
We live with the false notion that we control much of our lives, but we can’t predict the rapid or tortuous routes to death. If we could choose how we experience death, it wouldn’t include long weeks of suffering, being in a place where we couldn’t hug our pets, or waking up to unfamiliar surroundings. Being able to discuss what we want and, perhaps more importantly, what we don’t want, can bring comfort. It also may be the last time to seize the opportunity for control.
Making your wishes known through such legal documents as advance directives won’t ensure that every decision is clear. But these documents provide our voice to help those who must make tough decisions once we’re no longer able to do so for ourselves. Recently, many states have established free online registries with resources for advance directives that allow friends and family members to view your declarations. A national fee-based registry also provides electronic storage for living wills (http://uslivingwillregistry.com/).
We prepare for important events throughout our lifetime—births, graduations, weddings, moves, reunions. So why should we eschew planning for death? Whether the barriers are cultural, emotional, spiritual, or intellectual, we can help start the conversation in our own families, social groups, and communities.
Pamela F. Cipriano, PhD, RN, NEA-BC, FAAN