Steven M. Asch, Karl Lorenz, and Diane Meier
What can you choose when life restricts you to the narrow width of a hospital bed and your view is one of life’s final horizon? None of us can choose to live forever. But we can, usually, choose how to make the most of our remaining weeks, months, or years.
Helping patients choose how to live well at the end of life lies at the heart of advance-care planning. This is when patients, doctors, and loved ones talk things over and draw up a plan to match health care services to the patient’s goals. Such honest information, discussion, and choice were at the heart of the now-defunct provision in the proposed healthcare reform legislation that would have reimbursed doctors for counseling patients and their families at this crucial time. And yet, something so seemingly straightforward has still ended up at the center of a volley of political charges and countercharges, including a prominent mention in President Obama’s address to Congress on Wednesday night.
One of the provision’s critics, Sarah Palin, says she, not government bureaucrats, should choose what sort of medical care her developmentally delayed son might get. What parent would dispute her? Just this week Palin reiterated her opposition to advance-care planning provisions in health care reform in a Wall Street Journal commentary. But when a child is facing difficult medical treatment, Ms. Palin and virtually every other parent would need honest information about the medical alternatives and likely effects.
Ironically, the advance-care-planning provision would have helped ensure true freedom of choice for Americans facing different but equally momentous decisions. The provision called for paying doctors, once every five years for each Medicare patient, for providing information about living wills, healthcare proxies, pain medication, and hospice. It involved no coercion of patients or physicians involved, no “death panel” review - just honest talks in the privacy of the bedside or office that produce more, not fewer, choices. Such conversations can happen today, and sometimes do, but Medicare does not pay for them unless they are blended with other services. Medicare also does not count them as part of “quality care.”
Data show that the choices many people make about the end of their lives are not heard. Most patients say they would not want to have machines breathing for them at the end of their lives, yet many do. Most Americans say they would choose to die at home, yet most don’t. Half of patients dying with cancer don’t avail themselves of Medicare’s home hospice benefit.
One likely reason for these missed connections is that fewer than half of those over 65 have ever had an advance-care discussion with their doctor. If reimbursement for such discussions were even a reasonable fraction of what we pay for the myriad of procedures dying patients endure, the discussions would no doubt happen more often.
Critics also claimed that the advance-care provision constituted a cloaked cost-saving tactic. True, research shows that about a third of Medicare spending occurs at the end of life. Since many of us would choose to live more fully in the time we have left, rather than to chase every possible medical treatment, we may well turn down enough treatments to create some cost-savings. But there is nothing in advance-care planning that prevents us from choosing expensive care if it helps us live the life we want. And there is nothing about advance-care planning that prevents us from changing our minds, and choosing more aggressive care.
Life is a series of choices and becomes ever more precious when the end nears. We will all need honest information and supportive counseling when we find ourselves in this unfamiliar situation. The latest rumor-mongering about end-of-life care has forced politicians to pull back from a simple amendment to Medicare that would have enabled better choices about how to live with serious illnesses.
Most of us will live with such conditions at some point. Because Medicare covers more than three-quarters of us at the time we die, we should demand to track the quality of care during that period. One of the key measures would be the degree to which the plan of care reflects the patient’s priorities.
It has been said that “man is condemned to be free … we are our choices.” None of us – not the rich, not the politicians – can evade the kinds of choices we are talking about forever. Nor can we evade the consequences of not having thought about them. No matter what our views on healthcare reform, we should all lament that funding advance-care planning ended up as collateral damage in the attacks on the healthcare legislation. We’re all in this one together.
Editor's Note: Steven M. Asch and Karl Lorenz are researchers and physicians at the RAND Corporation. Diane Meier, recipient of a MacArthur Fellowship in 2008, is a geriatrician at the Mount Sinai School of Medicine in New York City.
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