The phrase might define an interesting group. Using it would certainly lead to policy decisions that go beyond "legislation by body parts." For those who are concerned about end-of-life care, and who have had such trouble with the phrase "terminal illness," the new category offers room for reform and study.
The Health Care Financing Administration (HCFA) contracted with the Institute of Medicine (IOM) to write a report about what the phrase could mean. In my testimony, I suggested that "serious" should refer to the range of illnesses that eventually cause death, causing along the way substantial disability and suffering. "Complex" should encompass the comprehensive care required to treat the problems serious illness creates, from basic health problems to personal and family suffering. Administratively feasible and clinically relevant thresholds could be established to define "serious and complex illness" – and those who qualified would receive special attention.
We know, to some extent, what these patients will need: ongoing symptom management, family and caregiver support, advance planning, continuity of care, and a focus on living well despite worsening disease. Specifically, in managed care plans, these patients need (and would need) protection from summary dismissal of their providers from managed care networks, and access to clinicians with expertise in treating serious and complex conditions.
The phrase "serious and complex illness" could mean people who are already sick with the disease likely to cause their death—in a few weeks or in a few years. This population is likely to mirror those we find when asking doctors the "surprise" question: "Which patients are sick enough that it would not be a surprise if they died within a few months?" Repeatedly, this "surprise" question yields a larger and more diverse group than that identified by asking, "Who is dying?" This larger population, however, includes almost entirely patients who need comprehensive end-of-life care.
In terms of public policy, this category offers intriguing possibilities. For example, Medicare hospice and similar financing structures could be made available to these patients. Could we learn to provide life-extending and rehabilitation services while also focusing on advance planning, symptom control, and family support? Could we require organizations and providers to demonstrate good outcomes before laying claim to having special skills in caring for these patients? Is expertise in managing serious and complex illnesses one of the right "specialties" to recognize in the health profession and in reimbursement for consultation?
This discussion goes beyond semantics. The Agency for Health Care Policy and Research (AHCPR) is seeking nominations for topics to focus upon for evidence reports about health care organization and financing. This endeavor seems custom-made for nominating "care of serious and complex illness at the end of life." Just think how much we could move end-of-life issues along if studied in this way!
Our letter of nomination is posted on the ABCD website. Others can support this nomination by writing to Douglas B. Kamerow, M.D., M.P.H., Director, Center for Practice and Technology Assessment, AHCPR, 6010 Executive Boulevard, Suite 300, Rockville, Maryland 20852. To be sure your letter is filed correctly, reference the "nomination of serious and complex illness at the end of life as a topic for an evidence-based review" and refer to ABCD as the initial nominator. Send us a copy, too! It is especially important that other organizations weigh in—even provider organizations such as hospices and hospitals can voice their thoughts on this issue. Please expand on what you might like to see and how you or your organization might use this work—and remember that even the most general statements of support are worthwhile.
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