Far from a left-wing conspiracy to deprive you of desirable care near the end of life, advance care planning - talking with one’s physician about goals and preferences for medical care in the event of incapacity - is the best way to ensure that your wishes are respected if you lose the capacity to speak for yourself. Because it is widely recognized as the ideal way to prevent both over-treatment and under-treatment, it has become the standard of care over the past 15 years.
Survey after survey indicates that most patients want to have end-of-life discussions but most do not have them. For example, a 2005 AARP survey in Massachusetts of members over age 50 found that 89 percent of those polled rated having honest answers from their doctor about end-of-life conditions as very important but only 17 percent had discussed their preferences for such care with their physicians. Study after study also shows that American patients continue to die in pain, on ventilators, and in the intensive care unit, though many of them did not want such treatment at the end of their lives. For instance, the Robert Wood Johnson study “Means to A Better End: A Report on Dying in America Today’’ found that 42 percent of all nursing home residents were persistently in pain, and the Dartmouth Atlas of Health Care found that 18 percent of deaths nationwide take place in intensive care units and 32 percent in the hospital, although the majority of Americans say they would prefer to die at home.
When physicians are asked why they do not regularly engage in advance care planning with their patients, they report that they do not have the time for such conversations. The legislation under consideration in Congress that would allow physicians to be reimbursed for an advance care planning discussion with their patients is simply an attempt to correct the imbalance between what patients want and clinical reality.
The current proposal is far from the first attempt to facilitate advance care planning. The federal Patient Self-Determination Act of 1990 mandates that all patients admitted to a healthcare facility receiving Medicare or Medicaid funding be asked if they have an advance directive (a written document specifying their wishes in the event of incapacity) and be given information about advance directives if they do not have one. Every state as well as the District of Columbia has advance directive legislation, which provides for the use of a living will (a statement about preferences in particular clinical situations) or designation of a healthcare proxy (a person to make medical decisions in the event the patient loses the capacity to do so) or both.
The only question we should be discussing is whether a federal mandate to allow physicians to bill specifically for discussions about goals and directives for care will actually succeed in stimulating advance care planning. That is why the bill calls for monitoring the use of the planning code - if it is ineffective in promoting end-of-life discussions, then we will need to find other strategies. The issue is not whether advance care planning is desirable; it is how best to encourage patients, families, and clinicians to have such conversations.
The reason it is important to have the conversations is that death is not optional. What is optional is how we will experience life’s last stage: Will we be in pain or will we be comfortable? Will we be in the hospital or at home? Will we be in an intensive care unit or enrolled in hospice? Discussions about end-of-life care have been shown to result in patients experiencing less depression, less pain, and less anxiety in their final days. Advance care planning gives us the opportunity to avoid both over- and under-treatment by allowing us to express our preferences and by discussing them with our personal physician.
This article appeared as an op-ed in the Boston Globe on August, 12, 2009.