A couple participates in The Final Acts Project.
A couple participates in The Final Acts Project. Credit: Courtesy / The Final Acts Project

When most of us think of an epidemic, we think of the rapid spread of disease involving a vast number of people. But there are other types of epidemics, those that are not driven by microbes or poverty, but by human emotions. They are referred to as epidemics of fear and anxiety.

Our nation has been under the cloud of a slowly growing epidemic of fear of death for several decades, with earliest seeds planted in the ’60s and ’70s as medical innovations began turning important corners in the treatment and cure of disease. As a consequence, we are now far too often crippled by the very thought of our lives ending.

A joke about dying in the United States sarcastically addresses how Americans feel about the close of our lives: In India, death is seen as a necessary step to help one move toward Nirvana. In Europe, death is viewed as an inevitable tragedy that all living things must face. In the U.S., death is seen as optional. 

Fear of death often translates into a reluctance to develop a plan of action for the end of life, which ultimately places us at a much greater risk of forfeiting our ability to live well until the very end.

Our country is not alone in facing the fear and challenge of advance care planning, an umbrella term that includes a living will and healthcare proxies. Many other nations struggle with the same challenge. The truth is that most of us have become skilled at avoidance and delay when it comes to end of life conversations, and we do this to the detriment of ourselves and those we love. We too often believe this is a conversation for the elderly, but it is not.

Anyone who is 18 or older should have an advance directive. Eighteen-year-olds are likely driving a car and participating in the voting process; some may be members of the armed forces or have young children. These individuals need an advance directive stating their values and wishes as much as the person who is 65. Equally problematic is the fact that far too many patients believe their physician should initiate that conversation. But unless their patients are over 65, doctors are unlikely to ask if they have an advance directive in their medical chart.

In many ways, our great strides in science and medicine have helped us reframe the way we define what a quality life looks like. Unlike our grandparents, and the generations that came before them, we now have a host of possible treatments that allow us to delay just about anything, including the need for dentures. With the steady expansion of the medical complex, end of life conversations, by default, moved behind the walls of the medical community and remained there in a semi-dormant state, surfacing in emergencies or when the death of a patient is imminent.

We believe that medicine’s primary mandate has always been to walk with patients, advocate for their wishes, offer a path of hope no matter what, and focus on optimizing their quality of life.

Modern medicine, however, has deviated from this path and now seems driven to maximize the length of life at all costs. In many circumstances, innovations and inventions designed to improve life’s quality – cardiac bypass surgery, for example – often lead to a longer and healthier life.

Fortunately, there is a growing awareness in the medical community that seeks to address this fear-based epidemic. Physicians, nurses, and bioethicists understand – perhaps better than most – the implications for the future of medicine and society if this trend of fear continues to go unaddressed. While most physicians recognize the need to have these difficult conversations with their patients, many are challenged by a lack of time and training in palliative care. It may also be unrealistic to place the bulk of responsibility for this deeply personal conversation on the shoulders of our physicians when it makes more sense for patients to initiate the advance care planning conversation with their loved ones first – hopefully long before the end is near.

Patient-centered care requires patients to be involved in the decision-making process for it to be a team effort. “There is a balance everyone strives for and as long as the patient is at the center of everyone’s efforts, then the likelihood of a positive outcome is greatly increased,” said Dr. Brian Fowler, a physician in Boerne.

Too often, Fowler added, “patients will go through exhaustive work-ups and treatments to satisfy family’s desires.” Avoiding unnecessary life-prolonging treatments that do not add value to the patient’s quality of life requires patients to share their wishes and values with family members and physicians before treatments commence. Patients must have access to and knowledge of important opportunities for end of life conversations.

When patients miss out on the opportunity to state their values and wishes for a good ending, we rob them of the chance to write their final script – a script no one should author but the patient. This was best stated in a hugely important but oft-forgotten quote by President Abraham Lincoln:

“Live a good life. And in the end, it’s not the years in a life that count. It’s the life in the years.”

Dr. Craig Hurwitz is a pediatrician who specializes in pediatric pain and palliative medicine. He completed his pediatrics training in 1982 followed by a fellowship subspecialty training in pediatric hematology...

Deborah Kaercher’s professional background is in public health and grassroots technology-based start-ups. She is the founding CEO of The Final Acts Project, which is dedicated to humanizing the end of...