In America we often portray illness as an enemy to be conquered, using militaristic phrases such as “heroic battles,” “never quitting the fight, and “a warrior beating the enemy.” Unfortunately, in the end, death doesn’t care about our courage or how hard we fight. As our lives come to a close, heroism could instead be about clear understanding and gallant retreat. Heroes can accept the fate we share with all living creatures and exit this life in peace and grace. The recent deaths of three prominent Americans teach important lessons.
Studies show that about 80 percent of Americans would prefer to die at home, yet only 20 percent actually do. Another 20 percent die in nursing homes, and 60 percent die in acute care hospitals, where they are more likely to have suffered needlessly from aggressive and painful interventions. But there are other ways to go. In Finish Strong’s Chapter 5, “Hope and Heroism,” I cite the story of the U.S. senator and war hero John McCain. Over McCain’s long life of extraordinary service, he gave us many lessons in courage and character. He forged his reputation as a hero in the crucible of imprisonment and torture in North Vietnam and he carried the blessings and burdens of the label “hero” the remainder of his life. Ideological debates and political battles, won or lost, never hid the basic decency and bravery of this man. And so it was with his death last August. For months McCain battled an aggressive brain cancer called glioblastoma that he understood would likely kill him. Glioblastoma is rarely cured. If surgically removed, it almost always grows back. Median survival is 12 to 18 months. For a time, McCain gave his best effort to beat it back and extend his life. In fact, mere weeks before he died at his Arizona ranch, media stories included warrior language like, “As he battles brain cancer . . .” and, “Mr. McCain, 81, is still in the fight, struggling with the grim diagnosis.” Those stories were incorrect. The reality was that McCain spent his last months in the quiet of his Arizona home, with those people and things dearest to him. He drew in the beauty of his natural surroundings and welcomed friends and family to his side, sharing memories and affection. Like any wise and sober champion, he stood tall in defeat and refused to squander his dignity to battle a lost cause. Instead, at the proper time, he had chosen to retreat from the cancer battlefield with a noble grace and integrity. McCain shunned a frantic pursuit of immortality that might have set him on a course of invasive, burdensome and ultimately futile travel, treatments and procedures. Some public voices continued with vapid assurances that he would “beat” his cancer, but other colleagues understood that his priority was the heroic closing of a life and lauded him for it.
In Chapter 6, “Hospice: The Healing Option,” I remind readers of Barbara Bush’s last days in April 2018—and how she “hopped off the overtreatment conveyor belt.” For many months, Barbara Bush had suffered shortness of breath, caused by congestive heart failure and chronic obstructive pulmonary disease (COPD). She repeatedly received intensive hospital treatment, with diminishing returns. Finally, the 92-year-old made a conscious decision to leave the hospital and return home for good, with a new focus on “comfort care.” Her decision was pointedly made public on April 16, National Healthcare Decisions Day. The press blew up the former first lady’s decision to face her terminal illness with new goals for care and created a media storm. Once again, warrior language came to the fore in reports that Bush’s decision had sparked a national debate on what it means to “stop fighting” a terminal illness, implying that she’d stopped all treatment. In actuality, she had just changed her treatment goals and location. Her doctors and specialists remained very much engaged in keeping her comfortable with morphine to ease shortness of breath and diuretics to remove excess fluid from her lungs. Did Barbara Bush make the right decision for herself? Readers who continued to follow her story learned that the Bush matriarch’s last days at home were probably exactly as she had hoped. Just prior to her death, the Bushes’ longtime friend Ambassador C. Boyden Gray said Barbara was in good spirits, answering phone calls and writing emails. Another source close to the Bush family told CBS News reporter Jenna Gibson that Barbara “was alert and was having conversations last night. She was also having a bourbon.” Comfort care indeed!
Finally, I recently wrote an essay for the newspapers about the death of Oprah’s mother, Vernita Lee, last Thanksgiving. In a People magazine interview, Oprah had shared with readers her emotional final days with her mother. As I saw it, a crucial decision enabled Oprah and her mother to achieve the sweet closure Oprah longed for at the end. Three years ago, when Vernita’s kidneys began to fail, she had put her comfort and quality of life first, and declined dialysis. Later, as other organs began to shut down, the family chose hospice care in the home. Her mother—“completely coherent and perfectly understanding everything” per Oprah—knew the end was near. Invitations went out to friends and family to stop by. Without Vernita’s decision to choose comfort and quality of life, Oprah might have told quite a different story about her mother’s last days. This could have been a story of desperate medical interventions, physical suffering and emotional trauma. Researchers have found these are a recipe for complicated and prolonged grief, leaving loved ones haunted by unfinished business, lingering regrets or unresolved conflict. Instead, with the some patience and persistence on Oprah’s part, Vernita and Oprah were able to have healing last conversations, “saying the things that you need to say while the people are still alive,” as Oprah puts it. It wasn’t easy for Oprah and her mom to create the setting for a loving truth to emerge. It rarely is. Our culture sends constant messages that we must act like a warrior up to the end. We must treat death as an enemy to be conquered, deploying every medical technology in the battle, and rejecting the possibility of “defeat.” Calm and peace can be hard to come by in that scenario. But as we see in the stories of John McCain, Barbara Bush, and Vernita Lee, it is indeed possible, with forethought and determination, to have an ending that is heroic in a different way. Courageous acceptance comes with a gradual, eventual recognition that bravery can no longer carry the day and the time has finally come for graceful retreat. A single heroic act is the turning point. That act is the conscious recognition that a life has been completed and the time has come to die. Compassion & Choices collects stories and personal experiences from people across the nation and puts them to work to change minds and heart and inform public policy. Do you have a story to tell? Contact the Compassion & Choices Storytelling Program at CompassionandChoices.org/stories.
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