My understanding of end of life was framed around my early experiences on our family farm near Springfield, Mo. Birth and death were frequently and naturally occurring events that were woven into the fabric of everyday life. The anticipation of a new life, or the loss of an old one, somehow provided an unspoken sense of equilibrium for my young mind. While wonder and magnificence surrounded every birth – animal and human alike – an unwavering grace and deep sorrow always flagged the passing of a life. At these moments our hearts beat the strongest.
Many things have changed in rural America since the 1950s, but what has remained consistent over the years is the ease and willingness with which smaller communities support their members with the day-to-day challenges of life, especially at the end of life. It’s not that illness and end of life conversations are easier in rural communities – they are always difficult – but the daily connection to cycles of life and death informs and deepens the human experience of mortality in ways most of our urban counterparts often don’t have the opportunity to participate in.
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My experience with urban life tells a different story. Our mobile and vast population, combined with complex and overburdened systems of health care and physician exhaustion, works blindly against us having any kind of meaningful end of life conversation in the very communities we live, work, and pray in. The intrinsic barriers of socially complex systems rob us of opportunities to construct a personal narrative of our values and wishes for end of life.
Sadly, urban society rarely asks us to care about anyone’s dying other than our own. We often fail to get that right because we live in a death-denying culture that permits, and even encourages, suffering and pain from medical technologies designed to squeeze out just one or a few more days of life, even if it means that life will be spent in a hospital bed, likely in an ICU surrounded by ventilators and other sterile machines.
The calming voices of love and compassion are replaced by beeps and alarms signaling the need for more intervention and discomfort. These interventions never seem to change the ultimate outcome, only the timing and location of where we die.
During my senior year of high school, a gentleman who lived down the street for 13 years suddenly died of a heart attack in the middle of the night. He had been ill for some time, but not one person on our block knew about it, or much about him, until the ambulance and his son arrived. The sense of shame the neighbors felt that night as they huddled together in the cold outside his home was palpable. Even though this kind of anonymity is part of urban culture, the sudden departure of a neighbor no one had bothered to get to know suddenly felt very wrong and it left an undeniable wound for the residents on our block to navigate.
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So who is driving the advance care planning conversations in our urban areas? Efforts to engage and educate individuals in this conversation are fragmented and inconsistent. Dr. Raymond Barfield, a pediatric oncologist and palliative care physician at Duke University, says the advance care planning conversation belongs to all of us and always has – it is merely a question of embracing it and sharing it within a space that is comfortable.
The faith community seems like a natural fit, but even faith leaders repeatedly ask me why we aren’t having these conversations. Moving advance care planning conversations into the faith communities would certainly be a step in the right direction: Spiritual health and end of life planning go hand in hand and could easily become a routine part of the work faith communities do for their congregants. My great-grandfather was a Methodist minister, and a regular part of his work was helping families have these difficult conversations.
Healthcare professionals are now working to bridge communication gaps among various sectors. They understand these bridges are critical if we are going to succeed in conserving the social capital of our families. While many physicians acknowledge that they are often ill-equipped to initiate the end of life conversation, they are now beginning to take a closer look at the value of advance care planning conversations in our adult populations. Thanks to leading palliative care physicians and advocates for advance care planning, physicians and medical students are receiving more in-depth training, including pointers on how to lead these conversations with their patients.
Our friends, colleagues, and family members also play a large role in helping us launch these important conversations. I asked my family to participate in a “bucket list party” several years back, and while they thought it odd at first, we all ended up having a lot of fun sharing our wishes and dreams with one another. Make starting the conversation easier by inviting friends, family members, and colleagues to share their bucket list wishes with you over a cup of coffee or a potluck dinner, and add an element of surprise by making all the wishes anonymous.
Most would agree the last thing a family needs when facing end of life issues with a loved one is the additional burden of unnecessary conflict and confusion. A philosophy professor I studied with as an undergraduate believed that an awareness of our end has a way of putting a sharper focus on how we value our lives, and helps us to live more fully in the “precious present.”