From Dust to Dust (or Dustbin?)

The new IOM report, “Dying in America,” is a masterpiece. Written in the matter-of-fact language typical of non-partisan reports by committees of experts, it makes recommendations with which no rational person could possibly disagree. Of course a few extremists have already gone on record as disagreeing: a spokesman for the National Right-to-Life movement was quoted in the NY Times as claiming that the report’s alleged focus on “cost slashing” would reinforce “well-founded fears” that advance care planning is intended to “push patients to accept premature deaths.” The truth is that the report says relatively little about cost and what it does say is simply that a side effect of following its recommendations, suggestions made in the spirit of improving the quality of care and assuring that patients’ wishes are followed, will likely be a fall rather than a rise in the cost of health care.

The report includes “clinician-patient communication and advance care planning” as the topic of one of its 5 recommendations, and it is presumably this section that is the core of the right wing critique. But the explicit goal of advance care planning is to enable patients to participate in decisions about their health care and to make those decisions in accordance with their values, goals, and (informed) preferences. The report rightly recognizes that this isn’t going to happen unless clinicians take the initiative and that all the planning in the world will be inconsequential unless it is implemented when you become ill. The idea that discussing what kind of medical care you want near the end of life is tantamount to suicide is patently absurd. It would be more accurate to say that failing to discuss your wishes is tantamount to assuring you will spend your final days in the hospital, tethered to machines, and in pain.

While the recommendations of “Dying in America” are straight-forward and unobjectionable, they are also cleverly designed to be “actionable,” to lead to concrete steps to promote change. Its recommendation regarding the delivery of care states that “government health insurers and care delivery programs, as well as private health insurers, should cover the provision of comprehensive care for individuals with advanced serious illness who are nearing the end of life.” This is in marked contrast to the language of the IOM’s 1998 report, “Approaching Death: Improving Care at the End of Life,” which addressed the same theme by urging that “people with advanced, potentially fatal illnesses and those close to them should be able to expect and receive reliable, skillful, and supportive care.” The only way that patients can “expect” to receive this kind of care is if the delivery system provides it.

In a similar spirit, “Dying in America” tackles professional education and development by urging that certification, licensure, and accreditation of clinicians require evidence of competency in palliative care. By contrast,  the earlier report exhorted educators and other health professionals to “initiate changes in undergraduate, graduate, and continuing education to ensure that practitioners have relevant attitudes, knowledge, and skills to care well for dying patients.” Without specifying what those changes are or requiring that they be reflected in licensing exams or accreditation processes, not very much will—or did—happen.

Finally, the new report singles out payment systems as critical to promoting change, suggesting that health care delivery systems—the networks of hospitals, doctors, and clinics that actually provide medical care—must provide the services that comprise comprehensive palliative care and health insurers must pay for them. The preceding report acknowledged the role of financing, but embedded its recommendation amongst a series of quality improvement measures and spoke in very general terms of the need to “revise mechanisms for financing care so that they encourage rather than impede good end-of-life care.”

The weakest recommendations of both old and new reports on dying are for ongoing public education and engagement. Other than the specific suggestion that professional societies should publish brochures and that government agencies should support relevant research, there is little beyond a vague exhortation that faith-based organizations, consumer groups and others talk about the end of life. Previous public engagement campaigns, of which the Robert Wood Johnson’s multi-million dollar “Last Acts” program was the most spectacular and the “Conversation Project” the most recent, proved disappointing. Perhaps the forthcoming campaign, to be supported by the same anonymous donor who subsidized (but had no control over the contents of) the current report, will elaborate further.

My main concern is that this spectacular report will be filed away, as happens with so many comprehensive, thoughtful reports on all sorts of topics Certainly the IOM has had some notable successes. “To Err is Human: Building a Safer Health System,” issued in 1999, did shine a bright light on medical errors and catalyzed efforts to make American hospitals safer. But the IOM has produced 898 reports, according to its website. How many of those have had an impact and how much impact have they had?

I could just as well ask: What makes a book a best seller? Why do certain fashions catch on and not others? Publicists have their own ideas about how to sell books (which, speaking from experience, tend to be pretty unimaginative and outdated); Madison Avenue has its model for advertising campaigns and marketing strategies. Malcolm Gladwell, in his book “The Tipping Point,”itself a bestseller, argued that to create a “social epidemic,” you need 3 crucial kinds of people (connectors, mavens, and salesmen), you need to make sure the content is “sticky enough” to be retained by those who are affected, and you need to be sure the context is right. 

“Dying in America” lays out the facts and the arguments. It offers "actionable" recommendations, but the question is whether anyone will act on them.  The implementation campaign must begin now, otherwise this magnificent report on “dust to dust” will go into the dustbin.