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.
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.