Last week the Institute of Medicine (IOM), the health arm of the National Academy of Sciences, issued a report on dying in America. Our system for managing end-of-life care received a failing grade.
If death is in your future, you may want to read this.
The IOM's mandate is to ask and answer the nation's most pressing questions about health and health care. So what makes the way our country manages the last chapter of life such a pressing issue?
Dying is not what it used to be.
It happens later and lasts longer. The average life expectancy at birth in 1900 was 47. That figure has now been extended to 79, a remarkable increase of 32 years. Antibiotics and vaccines provided the life-saving interventions that prevented the premature death of children as well as knocking out most fatal adult infectious disease. These short-term conditions were cured. The patients returned to the normal trajectory of their lives. By 1960 the average life expectancy at birth had reached 69.7.
This success redefined the predominant cause of death. In the later half of the 20th century long-lasting diseases (cancer, cardiovascular disease, diabetes) became the number one killers, rather than infectious disease. These diseases cause a progressive deterioration in health.
It is debatable whether the increase in life span since the 1960s has prolonged healthy years or extended a period of progressive disability.
Where we die has also changed. We no longer die at home surrounded by family and friends with the organizing presence of a familiar religious figure. We die in large institutions surrounded by professional strangers and the cacophony of modern medical technology.
One of the most important drivers for the IOM report was the discrepancy between personal preference and the clinical practice of end-of-life care. Taking something as seemingly simple as the issue of where we die illustrates the problems and some steps you can take to protect yourself.
Seven out of 10 Americans say they would prefer to die at home. The reality, nearly 70 percent of us die in a hospital, nursing home or long-term facility.
Site of death is considered a quality measure for end-of-life care. It is thought to have a significant effect on the grief and posttraumatic stress disorders experienced by family members. Studies have reported better quality of care at home. A recent study documented a trend of increased ICU stays and "transitions" (moves from one health care facility to another) in the last month of life.
How could the desire to die at home not be honored?
In the vast majority of cases doctors don't know where their patients want to die. This essential conversation usually does not occur. Less than one in three Americans report having an advanced directive such as a living will. In other words, 70 to 80 percent of us have not taken the necessary steps to dictate where we die.
When I say Americans don't plan on dying, I mean it both literally and figuratively. We spend more time, energy and forethought planning a vacation than addressing the end of our life, an event every medical study agrees will occur. Yet we act as if death is something that happens to other people.
This denial also manifests on a policy level. Medicare, the federal program established to provide health care to those 65 and older, does not pay for a doctor's appointment to discuss a patient's end-of-life care preferences.
In the absence of living wills, patients receive aggressive care. Their ability to communicate their preferences is often compromised in these settings. The default mode is aggressive curative care. A recent study indicated that in one year, Medicare pays about $50 billion for doctor and hospital bills during the last two months of patients' lives. This exceeds the budget of Homeland Security or the Department of Education.
Many people who do not want to die in an intensive care unit, intubated, on a respirator, pierced by a web of intravenous lines are dying this way. For these individuals, this is worse than death. We cannot prevent death, but we can dictate how we want to be cared for at the end of our lives.
What You Can Do:
Speak with family and health care professionals about your preferences for end-of-life care. Create (and update should your feelings change) a living will to define your preferences and protect yourself from unwanted interventions.
Support efforts to fund palliative and hospice care designed to make patients as comfortable as possible and to offer support to their caregivers.