Last December, new Medicare regulations were released implementing the new health-care reform legislation. The regulations included a provision allowing “voluntary advance care planning” as part of a Medicare recipient’s annual physical examination.
The inclusion of advance care planning in the regulations set off another political firestorm with familiar false charges of “death panels” and “pulling the plug on grandma.” With the repeal of health-care reform a top priority for Republicans in Congress, we will, unfortunately, be subjected to more political demagoguery for partisan purposes. Rep. John Boehner, the new Speaker of the House, upped the rhetorical ante by claiming that end-of-life counseling would “start us down a treacherous path toward government-encouraged euthanasia.”
No, it won’t. These charges are cynical, political theatrics designed to hijack an honest, intelligent discussion of a matter of grave importance to both personal choice and public policy. End-of-life counseling increases an individual’s control and places decision-making in patients’ hands, or that of their legally-designated health-care proxy, rather than leaving it up to hospitals and physicians, who may have their own personal interests and biases for making decisions.
The health-care reform debate didn’t create the need for advance care planning. It’s been promoted by medical caregivers for decades. When I worked for an acute care hospital in Sacramento in the l980s, information on advanced directives was distributed to each patient during pre-admission screening. That so few patients completed the voluntary forms is an indication of how misunderstood and uncomfortable the subject is for many people.
A segment on a recent “60 Minutes” told the story of a woman in New Jersey with terminal heart and liver disease who had signed a living will requesting a “no resuscitation” code, declining extraordinary measures to prolong her life. Yet she was repeatedly transferred from a long-term care facility to a hospital, and underwent tests and procedures from no less than 22 hospital specialists.
In essence, this 85-year-old woman was treated as a virtual ATM machine for physician specialists, none of whom advanced her health and all of whom made her final days and weeks painful, being poked, prodded and subjected to unnecessary tests for no discernible reason other than allowing physicians to bill Medicare and her supplemental insurance.
Her story is not unique. In 2009, Medicare paid $55 billion for hospital care in the last two months of patients’ lives. In spite of the fact that 70 percent of Americans say they would rather die at home, peacefully, with hospice and palliative care, most don’t because they haven’t made their wishes known in advance with a living will or advanced directive.
Advance-care planning doesn’t just benefit the elderly with terminal conditions. Any of us could experience a medical event or accident at any moment that leaves us comatose, unable to speak. Under what conditions, if any, do we want a feeding tube inserted, or a ventilator intubation when we no longer breathe on our own? If we are terminally ill, do we want our heart resuscitated if it stops beating on its own? If loved ones don’t know our wishes in advance, we place a terrible burden on them at a stressful, confusing, and deeply emotional time.
Advance-care planning gives each of us a voice at a critical time when we may have no voice at all.
I’ve had experience with end-of-life decisions twice in my life. One was foreseen years in advance because of the nature of the debilitating illness that took my mother’s life. The second was unforeseen, a result of a cardiac arrest that left a healthy relative in the prime of his life with no brain activity on multiple electroencephalograms (EEGs) — a result of being without oxygen too long, even though his heart was resuscitated and he appeared perfectly normal. There’s nothing easy about these situations; they are indeed matters of life and death, and they determine both quality of life and quality of death.
One of the greatest gifts we can give those we love is to discuss these issues in advance with each other and our physicians. Google “advanced care directives” or visit the National Institutes of Health website for information and advance care directive forms.
Ignore the political theater and take steps to take control of life and death decisions for yourself and family.