Granting the Last Wish: How we die
When my father was 90, still mentally sharp but physically failing, we went to see a doctor for a swallowing problem. He often coughed during his meals. The physician explained that food was getting into his airway and would sooner or later cause an aspiration pneumonia. The bad news, he continued, was that this would surely kill him. The good news, he reassured us, was that he could place a feeding tube through the abdomen and prevent such a death.
For my father, the combination of sharing a good meal and digging into ideas was one of life’s essential pleasures. He thanked the doctor for his time and gave me the “let’s go” signal. When the doctor protested, my father asked what was wrong with dying this way?
My father died peacefully at home in his sleep a year later after many pleasurable gatherings at his table. But his question stuck with me.
Dying is not what it used to be.
As interventions to postpone death multiplied, the medical mission transformed from care to treatment. Good care had been addressing comfort and pain but also assessing the appropriateness of an intervention by what meaningful life meant to an individual. Treatment, on the other hand, has increasingly removed the individual from the equation. Life and death define success and defeat, with little weight given to the quality of the life that has been “saved”.
Now death 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.
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.
The Institute of Medicine (IOM), the health arm of the National Academy of Sciences, recently issued a report on dying in America. Our system for managing end-of-life care received a failing grade.
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 post traumatic 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 manifested on a policy level. Medicare, the federal program established to provide health care to those 65 and older, did not pay for a doctor’s appointment to discuss a patient’s end-of-life care preferences until recently.
The default position of American medicine is diagnose and treat.
In order to make an informed decision about end of life care a third category requires exploration. Prognosis addresses the possible outcomes of treatment or no treatment. It includes the potential side effects and complications of treatment as well as an estimation of how much time may be gained.
Prognosis is an inexact calculus. While it may define how many will be alive in a given time frame, it does not identify who will survive that long. As importantly, it does not describe the quality of life for the survivors.
In the absence of living wills, patients receive life-saving care.
This may begin in an ambulance, an ER or an ICU. Their ability to communicate their preferences is often compromised in these settings. We do not want the medical system to decide who gets treated. It is our responsibility to define what interventions make sense for us.
Many people who do not want to die in a hospital, intubated, on a respirator, pierced by a web of intravenous lines, are dying this way. All definitions of a good death include some degree of control. 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.
· Your physician will be the most important source for understanding your condition. But doctors often feel uncomfortable discussing prognosis. Online data from reputable treatment centers provide diagnosis specific prognosis algorithms. This is not a substitute for your doctor but can enhance your understanding and ability to ask specific questions. For elderly patients UCSF medical school created ePrognosis.ucsf.edu.org.
· Qualification for financial benefits for hospice care can be obtained from state government guidelines called Local Coverage Determinants (LCDs).
Granting the Last Wish: How we die
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