Though death is the most inevitable fact of life, our social systems are broken when it comes to caring for people with advanced illnesses.
Americans are scared to death of dying. And with good reason. While rarely easy under any circumstances, we make dying a lot harder than it has to be.
A large majority of Americans still die in hospitals or nursing homes. Many suffer poorly controlled pain or other physical miseries and endure their final days feeling undignified and a burden to others.
Few of us can even imagine how things might be different. Therein lies the crux of the problem. Our society and mainstream American culture have never grappled with the fundamental fact of mortality; therefore, we do not know what to expect or what is possible. When someone we love is diagnosed with a life-threatening condition, the worst thing we can imagine is that he or she might die. The sobering fact is that there are worse things than having someone you love die. Most basic, there is having the person you love die badly, suffering as he or she dies. Worse still is realizing later on that much of his or her suffering was unnecessary.
This book is about understanding the dangers that confront seriously ill and dying people and their families, and avoiding the pitfalls that ensnare so many. It is about how things could be better -- much better -- for ourselves, the people we love, and, eventually, for our national community and culture. Most immediately, The Best Care Possible is about how to make the best of what is often the very worst times of life.
Clearly, a transformation is needed in the way our society and culture cares for seriously ill people and supports family caregivers.
When it comes to caring for people with advanced illnesses, our social systems are so broken and our health care system is so dysfunctional and, frankly, neglectful that it would be easy to become furious. In truth, however, this predicament is no one's fault. It is a consequence of living in remarkable, unprecedented times.
Death is the most inevitable fact of life. But the experience of dying has changed over the course of history, especially within the past 50 years. In many ways dying has become a lot harder. We are the benefactors and victims of scientific success. Serious, chronic illness is an invention of the late 20th century, the fruit of our species' intellectual prowess, the culmination (at least so far) of millennia of scientific progress. Throughout history, Homo sapiens have mostly died quickly. Primitives commonly died in childbirth or as infants. Children and adults died due to trauma and infections that today would be considered almost trivial, things like appendicitis or a fall that results in an open arm bone fracture that then gets infected. But our ancestors also died in short order from cancer, kidney failure, and heart failure, which people in the 21st century are either cured of or live with for many months or years.
These advances exemplify the good fortune we have to be living in the present day. But our species' epochal success in staving off death impacts contemporary individual and communal life in ways we have yet to understand. Prolonged serious illness, physical dependence, senescence, and senility are now common facts of late life. Our society and culture -- all of our respective cultures -- must factor this new normal "waning stage of life" into our expectations and plans.
It is not easy to die well in modern times. Because so many treatments now work, many people survive longer with one, or several, previously lethal conditions. Clinicians now talk about a patient's "illness burden," a term for the accumulated aches, pains, and disabilities that come with diseases and the side effects of treatment. As odd as it may sound, people are sicker before they die today than ever before.
In general, our health care system doesn't do a good job of helping people deal with the burden of illness. Striking medical advances in prolonging or replacing organ functions have not been matched by proficiency in preserving comfort and quality of life for people who are ill or their families. Even in otherwise excellent medical centers, conscientious professionals lack key skills that are essential for comprehensive caring. Busy clinicians tend to give short shrift to communicating fully with patients, treating pain or nausea or difficulty sleeping, or coordinating appointments for blood and imaging tests, office visits, medications, and transmitting critical information among various specialists. The unwavering focus on treatments for sustaining life can leave someone who is living with an advanced disease physically uncomfortable, feeling lost and confused, not knowing how to get through each day or how to plan for the future.