Standing under the canopy, hiding from the scorching sun, I listened to stories of my grandfather. Meanwhile, my grandmother stared aimlessly ahead, her dementia shielding her from her husband’s body — neatly tucked inside a wooden box. I had met my family in San Diego to mourn my grandfather’s death, but confronted with my grandmother’s foggy-eyed gaze, I found myself wondering what the end of her life would look like.
As a family medicine doctor, I knew what conversation was needed. I also knew the challenges of initiating such conversations. The week before, I had seen a 95-year-old gentleman have his ribs crushed and crumpled like papier-mâché during CPR because there was no documentation indicating he wanted anything differently. I remember sitting anxiously the month prior with a family trying to decide whether to “pull the plug” on their comatose father/husband, uncertain of his wishes, having never had that conversation.
These conversations are hard, but they are immensely important. Regardless of how healthfully we live or how much medical care we receive, we will all die. Yet, understanding this intellectually is vastly different from truly feeling it; raw confrontation with our own mortality is frightening. Many of us live in denial about death — shying away from discussing it — and many medical professionals act as if death is a problem to be solved, rather than a process to be lived. Consequently, while 92% of people believe talking with their loved ones about end-of-life care is important, only 32% of people do so. Similarly, while 97% of people say it’s important to put their wishes in writing, only 37% of people have such written documentation.
We mustn’t succumb to this cultural fear of death. When we confront our end-of-life processes through humble inquiry and acknowledge our own mortality, we are able to articulate what we want to avoid. In doing so, we are not harbingers of misfortune, but rather active participants in care that helps ensure we live and die in a manner consistent with our values and priorities. While engaging in this emotional discomfort can be daunting, the avoidance of such conversation is far worse.
Too often, I find critically ill, hospitalized patients who have not yet considered how they want to live when their health is severely compromised. This not only contributes to excessive health-care expenditures (25% of all Medicare costs are from the last year of life), but it creates enormous familial stress when life-threatening decisions — such as withdrawing life-support — are unexpectedly thrust upon family members. Furthermore, ignoring our inevitable futures prevents us from receiving care we want — 70% of patients report wanting to die at home but less than half do so.
We must find the courage to discuss these issues with our doctors, our parents and our children. Fortunately, there are examples throughout the country paving a way forward.
“Death Cafes” are now spread throughout the country, where folks come together to talk about end-of-life care. Card games, such as “Hello,” offer creative opportunities for friends and family to discuss hopes and fears surrounding death. To some, this may sound outlandish, but when such tactics have been embraced, marked change has occurred, such as in La Crosse, Wisconsin, where similar efforts have led to 96% of people holding advance health care directives.
Bringing such conversations to the forefront of our collective consciousness, as was done for my grandfather, is possible … if we so choose. Ask your primary care provider at your next appointment to offer insight on advance care planning. Explore resources like Stanford’s Letter Project and The Conversation Project, which aim to help us articulate our health-care priorities and personal legacy.
What greater gift can we give our parents than to humbly inquire about what is most important to them as they age, so we can help facilitate their health-care goals? In so doing, not only might we reduce familial stress, we may liberate our families and ourselves to fully live.