The Next Step for End-of-Life Care

By Mary Mulcahy
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Cancer patient Willie Perryman talks with medical doctor Roseanne Cook. (Haraz Ghanbari/AP)

As the sole physician in my large and far-flung family, I am accustomed to receiving phone calls and emails from relatives seeking medical advice or simple confirmation that they and their doctor are making the right health care decisions. This is typical, and a reality to which I know most medical providers can relate. However, the strangest communication of this sort came in the form of an email, from my mother.

                Subject:   Not urgent

                Message:  Does a DNR cover everything?

My parents are not regular email users, so even though this message was labeled as Not urgent, my curiosity about what prompted it was certainly piqued. Despite being in the midst of a booked all-day clinic, the email clearly necessitated a telephone call. My mother had recently moved to Florida and established care with a new primary care doctor. As she was checking out of the office, the nurse—or maybe the receptionist—gave her an advance directive for healthcare and told her that the doctor likes everyone to have the form. There was no conversation between the physician and the patient: My mother.

The possibility that there may one day be value recognized in end-of-life counseling has been resurrected this summer by Senators Mark R. Warner and Johnny IsaksonTheir new bill was introduced in August, and goes beyond the previous, similar bill introduced in March by Rep Earl Blumenauer. Both bills, currently in committees, are intended to reimburse medical professionals for the time invested in these end-of-life conversations, develop a public information campaign, and develop quality metrics to measure the effectiveness in delivering the desired medical care. 

This process will encourage patients to be informed and specify their end-of-life preferences, whether they be the DNR that proved perplexing to my mother, or a do “everything medically possible” order. Republican co-sponsors are certainly a boon to the bill’s future. Rep. Blumenauer has vowed to talk to every member of Congress to build support, and it is my hope—along with that of so many of my colleagues nationwide—that he proves successful.

The need for a bill is revealed in a recent study in the Journal of the American Medical Association. As background, physician payment is currently based on a value assigned, by Medicare and Medicaid Services, to the physician-specific work. The hourly revenue generated by a physician providing a cognitive service, one that involves thinking, reasoning and judgment without a procedure, is $87. That same physician—if conducting a procedure such as a colonoscopy or a cataract extraction—will make more than $300 per hour for the physician time associated with that service. This discrepancy results in fewer physicians entering cognitive fields and less time allotted per patient, at a time when more people are living longer with chronic illness. 

The study proves that medical conversation, the intimate kind that often only occurs within an examination room in the presence of a physician, is not valued highly by the American health care system. Medicare’s reimbursement for procedural care at a rate three-to-five times higher than that of cognitive care is a daunting reality that leads many of my fellow physicians to be pessimistic that any compensation for end of life dialogue will ever be valued. Among other things, the new legislation will assign a code and value to the complex discussion of end of life planning. Some may argue that this cannot be compared to the complexity of a procedure such as a colonoscopy or a cataract extraction. However, having an advance care planning discussion that results in a documented care plan to reflect informed choices is a skill that must be taught, learned and practiced just as intensively as any medical procedure. A poorly conducted end of life discussion will leave a scar deeper than any surgeon’s knife.

My mother's experience reflects the gap that has been evident since the passage of the Patient Self-Determination Act in 1990 by the United States Congress. The Act requires that healthcare institutions provide information about advance health care directives to adult patients, with no mention of any discussion regarding the directives themselves.

Two decades later, early versions of healthcare reform legislation called for paying physicians to discuss advance care planning with their Medicare patients, like my mother. The idea was shot down multiple times for multiple reasons. The most notable was after the criticism of many people, including former Republican vice presidential candidate Sarah Palin, who alleged the reimbursement equaled an attempt to save money by expediting the death of the elderly through federally-sanctioned “death panels.” The provision came up again after the passage of the Affordable Care Act. It would have reimbursed physicians for an annual wellness visit with Medicare patients—a visit that could have included advance care planning as a reimbursable component. Despite the support of the medical community, ACA opponents argued that the Obama administration was attempting to resurrect the “death panel” and to enable well-intentioned doctors to “throw granny off a cliff.” The proposed regulation was suddenly dropped. Physicians may still discuss advance care planning with their patients, of course. But they cannot bill Medicare for this service.

These are the kinds of dialogues I have had daily in my more than a decade of practice at an academic medical center in Chicago. I offer no “procedure,” no surgery of any kind. I am a medical oncologist, and when the chemotherapy and radiation treatments I provide stop working—as they undoubtedly do in cases of advanced cancer—the services I can reasonably and compassionately offer a patient shift. Quality of life, hopes, values and desires to fulfill before a cancer runs its course are topics of discussion I raise when goals of care change. My proudest moments come as I see terminal patients take control of their lives in the form of preparing a will, planning for children, identifying a legacy and communicating advanced directives. My ability to facilitate a frank discussion to bring peace to a patient is a skill I have developed over years of practice, and one I hope to one day master. It is one shared by the best of my fellow physicians, but sadly of little monetary value through the lens of health care.

These conversations are unfortunately inevitable for so many of my patients to whom I provide cancer care. But in the realm of primary care, my colleagues face real financial disincentive to initiate similar dialogue, even when it is so often easier, and likely better received.

This article available online at:

http://www.theatlantic.com/health/archive/2013/09/the-next-step-for-end-of-life-care/279358/