Searching for Common Ground in Advance Care Planning

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Flowers adorn a tombstone at Fort Sam National Cemetery.

Scott Ball / Rivard Report

Flowers adorn a tombstone at Fort Sam National Cemetery.

The life cycle of humans and its notorious unpredictability has been of great interest to me from my earliest years of childhood, which is perhaps why I feel such a connection to the work I do now around end-of-life education with The Final Acts Project (TFAP).

The Final Acts Project was created to fill and support gaps in difficult conversations around mortality, and to inspire others to consider what it means to share their life wishes with those they care about most. Utilizing the arts and humanities has allowed us to approach these challenging topics at the community level in a non-threatening way. Our goal is to redirect the authorship of the life script back to the individual. In this arena of public health, the feather will always outperform the hammer.

Collaborative learning is the new mantra in all sectors, and it adds incalculable value to the work we all do in our respective professions. This approach allows TFAP to co-create a more meaningful and inclusive path forward with the potential for higher rates of success. Through our collaborations we have discovered that programming that works well at the university level may not always translate into success in a retirement community – audiences’ needs and sensibilities are embedded within a different stage of life. The human ear is a great filter, and it is always tuned in to what is most relevant at every stage of life.

In our search for common ground, TFAP has been fortunate to work with many diverse sectors and organizations that have helped us advance our mission at more effective and interactive levels. I rarely pass up an opportunity to migrate the work I do into other spheres of activity and professions because end-of-life issues and advance care planning – and the lack thereof – have serious implications for all sectors, whether we realize it or not. This is why our partnership and participation in this year’s fall conference – a community-wide collaboration with faith, corporate, City, community, and educational leaders – is so timely, focusing on bridging the gaps in health care. Silos are the new dinosaurs.

The conference, titled “Healing our Fractured Healthcare,” will take place Oct. 11-12 at the Oblate School of Theology and will include lectures, workshops, and a keynote address by Dr. Jessica Nutik-Zitter, a national advocate for advance care planning.

For tickets, click here. 

Over the years I’ve had a number of people ask, “Why end-of-life? Don’t you find it a little depressing?” The short answer is, “No, I don’t.” I don’t take dismayed looks personally because I realize our attitudes toward end-of-life are a reflection of our society’s great fear of death. Let’s face it: Very few of us want to die.

But in today’s world, our fears are continuously stoked by access to new levels of consumerism. Industries promoting a youth-based culture range from couture to cosmetics, from pharmaceuticals to health care, and from fitness to fit-bits. It is big business and there are talking heads speaking to us from every direction, 24/7. At the very least, it is a convincing display of options we all must reckon with sooner or later.

On the other hand, the plethora of options isn’t all bad, even if it is a bit overwhelming. Millions of people have had their lives improved and extended by many years – with quality of life intact – thanks to technologies we didn’t have a mere decade ago. But we must be informed and wise about our choices and decisions. We also must work to protect our families from unnecessary burdens and resist the temptation to procrastinate or renounce our responsibility to participate in the decision-making process.

Long before our time comes, we must all do our best to understand what palliative care and hospice mean, and the respective roles they play in supporting us while we are on the stage of life for our last and final act. Quality of life is a core value we must insist on and protect, but to do it well it must be written into the script and shared widely with those closest to us.

For those who find my choice of life work a great mystery, I can only suggest that the seeds are planted in our day-to-day world and in the most unexpected experiences, which ultimately shapes the direction of our lives. There is little doubt how my years spent on the family farm and my 3-year-old mind’s experience of my great-grandfather’s death were instrumental in shaping my sense of life endings – though obviously my understanding was superficial.

My appreciation of great-grandfather’s aging process was purely sensory. He had snow-white hair, and his cloudy blue eyes were always focused on some distant horizon beyond the living room. His indecipherable sounds were like prophetic utterances within his restless fog. The combined fragrance of mothballs and talcum powder was his signature scent. He was surrounded by a throng of family, friends, and congregants from his years of ministering – his social and familial networks seemed to blossom out of thin air. Before his sudden and mysterious departure, this was the sum of what I understood about the cycle of life.

On the day of great-grandfather’s funeral, there were heavy winds and snow and, because I was prone to bouts of pneumonia, I was left at home with a flatulent aunt from Kansas whom I had never met. Furious that my older brother was allowed to attend and that I had been left behind to suffer in silence with an unspeakable aroma, I cornered him as soon as he returned home. Simmering with anger, I demanded to know what he had done with great-grandfather. My poor brother, a mere 13 months my senior, found himself saddled with the ominous task of telling me great-grandfather would not be returning home because he was dead. Dead? What is dead? This was a complication I had not anticipated.

Great-grandfather’s closing doors – an ordinary event in the life cycle of humans – opened a world of great mysteries I continued to explore throughout my academic and professional life. My work around end-of-life issues and advance care planning education has provided me with the unique opportunity to witness multiple sectors and professions stepping onto the stage of life in order to slip into the very roles they were trained to play.

It is an extraordinary and beautiful process when everyone understands that the patient’s life script is the priority, and that working from that point moving forward is the ultimate goal. This is the common ground we should all work to find, and it requires each of us to respect and protect the autonomy of the patient as the central lead in the cast. The fall conference, which The Final Acts Project will be a part of in October, will reinforce the need for stronger orchestration between our healthcare systems and our partnering systems of care in highly diverse sectors – corporate, faith, mental health, and public health, among countless others. We can no longer afford to lose sight of the importance of a collaborative care approach between all sectors to ensure the patient’s script is honored.

Death is anything but a solitary event. Just ask my brother.

One thought on “Searching for Common Ground in Advance Care Planning

  1. Thank you Deborah! And we were just customers at Morningside Ministries (and not otherwise affiliated with them, just a disclaimer of sorts…), but I love to tout mmLearn.org, for the self-teaching caregiver in one’s family. Just a boatload of useful information, including end-of-life topics, for free.

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