Making the Best of What Is Often the Very Worst Time of Our Lives

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Though death is the most inevitable fact of life, our social systems are broken when it comes to caring for people with advanced illnesses.

Credit: Dennis Sabo/Shutterstock

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.

Nearly everyone who is asked where they would want to spend their final days says at home, surrounded by people they know and love and who love them. That's the consistent finding of public opinion surveys and, in my experience as a doctor, remains true when people become patients. Unfortunately, it is not the way things turn out. At present, just over one-fifth of Americans are at home when they die. Instead, over 30 percent die in nursing homes, where, according to opinion polls, virtually no one says they want to be. Hospitals remain the site of over 50 percent of deaths in most parts of the country, and nearly 40 percent of people who die in a hospital spend their last days in an ICU (intensive care unit), where they will likely be sedated or have their arms tied down so they will not pull out breathing tubes, intravenous lines, or catheters.

Dying is hard, but it does not have to be this hard.

As the process of dying has changed, so, too, caregiving has become much harder than it used to be. Modern civilization's historic successes against disease have multiplied both the complexity and duration of family caregiving. Today, more than 60 million Americans are tending a frail elder or sick child or adult at home. Even otherwise excellent medical treatments and hospital care may leave a family not knowing how to care well at home for a dying loved one. By the end of a long illness, family caregivers are commonly physically and emotionally exhausted. Up to a third of close family members of people treated in an ICU experience anxiety or depression consistent with post-traumatic stress disorder. In a health surveillance study, family caregivers who reported the highest levels of emotional or physical strain from caregiving had nearly two-thirds higher risk of dying in a four-year period than age-matched controls.

best care possible new quote.JPG Caregiving is hard, but it does not have to be this hard.

Clearly, a transformation is needed in the way our society and culture -- not merely our health care system -- cares for seriously ill people and supports family caregivers. Right now, effective advocacy by patients and families is needed to avoid common mistakes, avert suffering, and prevent regrets. Knowing what to expect, what to demand, and what limitations to accept can lessen the burdens of illness and caregiving.

The collective impact of longer lives and common periods of physical dependency affect the economic well-being of individuals, families, and society as a whole. Families commonly miss the lost income that results from sickness and caregiving, absorb out-of-pocket expenses, and worry that costs might exceed the lifetime limits of insurance coverage. Tens of thousands of home foreclosures are attributable to lost wages and medical costs of long-term illnesses. Even before the recent deep, prolonged recession, well over a million American families annually filed for bankruptcy due to health care costs. Aggregate health care expenses are felt by employers, large and small, and by all of us who pay taxes that underwrite Medicare and Medicaid. These medical costs erode our national capacity to engage in other pressing priorities: education, social services, and our country's infrastructure of bridges, roads, railways, and information highways.

As difficult as things are now, these may turn out to be the good old days. How we die is already a public health crisis, and care for people through the end of life is poised to become a generation-long social catastrophe. Within the next few years, a demographic tidal wave of aging and chronically ill Americans will overwhelm our already stressed systems. As a nation, time is fleeting to avert a full-blown disaster.

Very soon, for the first time in human history, older people will outnumber younger people on our planet. In the United States, one in five adults is 65 or older. The 75 million baby boomers have begun paying senior prices at the box office and every day thousands more qualify for Medicare and Social Security. Consider that in 1940, when Social Security benefits were first paid, there were an estimated 41 workers paying into the fund for every recipient of benefits. This ratio has progressively diminished and is on track to be 2.1 workers for every beneficiary by 2030. Those of us who are concerned about long-term care have good reasons to worry. The nursing homes of the future -- our future! -- may make today's nursing homes look like luxury hotels.

It doesn't have to turn out that way.

TEMPLATEReadMoreBookExcerpts.jpgExcerpted from Ira Byock's The Best Care Possible: A Physician's Quest to Transform Care Through the End of Life (Avery)

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Ira Byock

Ira Byock is director of palliative care at Dartmouth-Hitchcock Medical Center in Lebanon, N.H., and author of The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life.

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