by Susan Bauer-Wu, PhD, RN, FAAN
Tussi and John Kluge Professor in Contemplative End-of-Life Care
Director, UVA Compassionate Care Initiative
University of Virginia School of Nursing
Adjunct Faculty, University of Virginia, Department of Religious Studies
Author, Leaves Falling Gently: Living Fully With Serious & Life-Limiting Illness Through Mindfulness, Compassion, & Connectedness (New Harbinger, 2011)
The Thanksgiving holiday brings us together with family and friends. It’s a time of pausing to count our blessings, sharing a delicious meal, and reaching out to the lonely and disadvantaged. And yes, there’s also watching professional football, which, according to a National Football League commentary, “has become as essential as turkey and mashed potatoes.” Now I will go out on a limb and offer a suggestion for another, different kind of Thanksgiving ritual: having difficult conversations and talking with those you love about your end-of-life wishes.
In our society that is obsessed with youthful looks and staying alive at all costs, Americans avoid such conversations. It’s as if not talking about death will prevent it from happening to you. Clearly, on an intellectual level, we know that’s not the case. Nonetheless, the messages we get from the media plus our own discomfort with death delude us and leave us ill-prepared for the inevitable last breath.
As a professional nurse who has witnessed literally hundreds of deaths, some expected as is the case with terminal illnesses and some unexpected from fluke accidents, I can confidently say that having had such conversations about end-of-life wishes makes a difference, not only to the person who is dying but also to those trying to navigate and make decisions on the patient’s behalf—spouses, children, and grandchildren as well as doctors, nurses, and others on the health care team.
More than three-quarters of Americans would like to die at home, but fewer than 25 percent of us do. Of those who die in hospitals, many are in intensive and critical care units, who are delirious, connected to tubes and sometimes in pain, with distressed family members by their side — uncertain and sometimes unable to make decisions about their care. The primary reason why many people die this way is because they didn’t convey their wishes.
Even when illness is present, we hold back from having such conversations. The vast majority of “do not resuscitate” orders (DNRs) are written within two days of the end of life, often times when all heroic measures have been tried, family members are completely depleted, and the opportunity to die a peaceful death at home is lost. In a study that I led of advanced-stage cancer patients, more than half had not discussed their end-of-life wishes with their doctors or families, despite being given months to live. I am reminded of a young woman I knew well. Living with extensive metastatic cancer she was couldn’t bear to tell her family she was ready to die (for fear they weren’t ready to hear it). She confided in me of her readiness to pass. But between her husband’s hope for a miracle cure and her mother’s determination to nurse her daughter back to health, she died in the ICU. No one felt good about the way her life ended.
I also recall countless other instances when families had the conversations and the end of life was visibly more pleasant and peaceful. One example, a middle-aged husband and father was aware of his decline and worsening illness. He honestly explored his medical options, had a heart-to-heart talk with his family, and thoughtfully made a decision to stop intensive treatment. With wonderful hospice care and support from his family, he enjoyed sitting on his deck and feeling the fresh air and sunshine on his face, taking walks and naps with his dog, eating his favorite homemade meals, and sharing stories and laughing with his wife and children. He died quite comfortably a few months later, his beloved family and dog at his side.
Take a few moments to reflect on what is most important to you. And over the Thanksgiving holiday, take advantage of the time together and try a different kind of ritual. Have those difficult conversations. By taking the time to really listen to one another’s end-of-life wishes, you will not only be prepared for that unavoidable moment, whenever it may be, you will also be reminded of the preciousness of life and your relationships. May you pause in gratitude and not take anything for granted, including one another.