End-of-life care discussions are in patients' best interests

It's incumbent upon physicians to help patients understand end-of-life care options, even though the coding and payment system for these discussions is lagging behind. Discussions about options have been shown to lessen depression, pain and anxiety for patients in their final days. A formal payment code would help in tracking such vital data.

Reply: Recently proposed federal legislation on health reform would have allowed physicians to code and get paid for discussing end-of-life care options with patients. This idea was not welcomed; instead, it was met with alarm and bizarre misunderstanding -- the "death panel" inference and cries of "health care rationing." The provision has been removed from current reform bills.

The rationale behind the proposal was the assumption that allowing doctors to bill specifically for discussions about goals and advance directives for health care planning would motivate them to have those discussions. If this assumption is correct, then how do we convince the public that we are not trying to "pull the plug" on old people who get sick and are viewed by some as a drain on society's resources, but that advance planning discussions are in their best interest?

Paradoxically, the very idea that created the most furor about governmental coercion would have increased patient autonomy by guaranteeing everyone the right to discuss and set goals with their doctors about the kind of medical care they want as the end of life approaches. It would have placed informed decision-making about care directly in the hands of patients, where it belongs.

If we don't discuss with elderly patients their entitlement to the Medicare hospice benefit, for example, their decisions are not fully informed.

There is considerable evidence that physicians and patients need to improve their communication about end-of-life care options. So often we wait until the patient is too ill to participate fully in the decision-making. Survey after survey indicates that the majority of patients would like to have advance planning discussions but don't ever accomplish the goal.

What are some barriers? I think the foremost barrier is that many health care professionals believe that patients should initiate the conversation, while patients expect their practitioners to do so. Some patients think that physicians are not comfortable discussing end-of-life issues, and some physicians think that broaching the topic will frighten patients. It becomes a stand-off: Neither party initiates the conversation, and each waits for the other to do so.

Beyond this, practitioners report that they do not have the time for such conversations. This claim is the basis for the assumption that coding and payment for advance care planning would help physicians view it as a legitimate medical service and one worthy of the time spent.

But payment systems traditionally have rewarded technical skills more than communication skills. Medicare will pay for almost any medical procedure but it will not pay physicians or midlevel practitioners for having an emotionally demanding, personal and thoughtful discussion to prepare patients and families for the complex and delicate decisions surrounding the end of life.

And yet sitting down and having a frank discussion about end-of-life issues can be as life-changing for a patient as any billable medical intervention. Lance Armstrong has stated that, on the day he and his physician had the discussion about his metastatic testicular cancer, he "left home as one person and returned as another."

Partly as a result of current payment policy, those difficult, emotional conversations are not happening nearly as often, or as early, as they ought to. The average hospice stay is less than a month, yet it can take at least 60 to 90 days, sometimes longer, to develop rapport and help a patient and family through the process.

There are other recently reported facts that patients should know: The literature indicates that patients who stop all aggressive therapies actually may live longer -- an average of 29 days longer by one study -- than do those who continue aggressive care at the end of life. Moreover, a patient's being on hospice is associated with a significant reduction in the risk of death for that patient's care-giving spouse.

Death is not optional -- it is the largest geriatric syndrome. What is optional is how we experience life's last stages. Will we be at home, in the hospital or in a nursing home? Will we be in pain or have our pain well-controlled? Will we be in an ICU or enrolled in hospice?

Most caring physicians will not avoid discussing these matters with patients who are facing serious illnesses simply because they cannot code for them. These discussions still take place all the time in physicians' offices, hospitals, nursing homes and hospice settings. That is part of being a compassionate and caring doctor.

In a time when hospice and palliative medicine has become the 21st official medical specialty, and the use of hospice has grown so that approximately 40% of all deaths in this country take place in hospice care, it seems that the coding and payment system is lagging behind what practitioners are actually doing.

That system may even be moving backward, as the Centers for Medicare & Medicaid Services has recently eliminated payment for the inpatient and outpatient consultation codes previously used by the palliative care consultant.

Most busy physicians are less likely to take adequate time to discuss advance directives with a younger healthy patient -- the very patient who might benefit the most from such discussions. It seems reasonable that creating a diagnosis code that would allow health care professionals to charge for these discussions certainly would encourage them to have the conversation with this healthy population. The public deserves to be informed and educated with truthful facts about end-of-life choices. How else can "informed consent" be considered to be truly "informed?"

We do not know for sure whether payment for advance care planning would reduce the cost for terminal care. But discussing care options with their physicians gives patients the opportunity to avoid overtreatment as well as undertreatment.

Another helpful spin-off of a formal code is the ability to track how often these discussions are happening. At this point, we have no useful data as to what discussions are occurring. If coding and payment are ineffective in promoting end-of-life discussions, we will need to find other strategies.

Why and how did the recent legislative proposal to reimburse advance care planning go so terribly wrong? We can speculate that being associated with a massive, controversial health care reform bill made the provision immediately suspect. The provision that Medicare would pay for advance care planning discussions every five years was easily "misinterpreted" as something that must be done every five years, hence the "death panels."

Perhaps the time for acceptance of end-of-life discussions has just not come in our society; more likely, this provision became the pawn in a political game. Whatever the cause, we must now be alert to the distortions that lie ahead as health care legislation moves forward.

How do we best educate both health care professionals and the public about end-of-life care? How do we effectively communicate that this is more about ensuring patients' rights than about limiting care, hastening death or making more money? Most important, health care professionals must speak out on behalf of our patients and convince our legislators that advance care planning is in the public's best interest.

The good news is that the discussion has started. With our aging demographics and increasing demands on the health care system, it is bound to persist. Perhaps each time it arises, it will seem a little less threatening, and eventually a payment code for end-of-life discussions will become standard of care.

Jerry Old, MD, associate professor and geriatrics clerkship director, Kansas University School of Medicine, Wichita; community leader in the hospice movement