Can We Talk?

This week revealed the long-awaited results of a trial of the “Serious Illness Program,” the meticulously designed and carefully studied project of researchers in palliative care at Dana Farber Cancer Institute and at the Boston think tank, Ariadne Labs. Initially conceived of as a “checklist” by checklist enthusiast and founding director of Ariadne, Atul Gawande, the program has evolved into an educational program for clinicians. Specifically, it involves teaching physicians to use the “Serious Illness Conversation Guide” to structure discussions with patients about end of life preferences and values. In this study, carried out at 41 “clusters” comprised of 91 physicians, nurse practitioners, and physician assistants working within the Dana Farber orbit, palliative care physicians did the teaching and provided follow up coaching. Ultimately, only 35 clusters providing care to 209 eligible patients had evaluable data. What the results showed is that despite all the effort spread over a four-year period, the Serious Illness Conversation Guide failed to achieve any of its primary outcomes.

The researchers hypothesized that if physicians were trained to use the researchers’ communications tool, patients would be more likely to have “goal-concordant care;” that is, the treatment they received would be aligned with their wishes. In addition, it was hoped, they would be more likely to experience a peaceful end of life. Neither effect was observed. There was less anxiety and depression among patients whose physicians had been trained to use the Serious Illness Conversation Guide, though perhaps a less-labor intensive or qualitatively different approach would have achieved the same effect.

What should we conclude from the failure of this communications guide to achieve its goals? The authors blame it on the small sample size and low patient accrual rate. They point out that their conclusions are of limited generalizability, given that the patient population was predominantly white, affluent, and college-educated. The more fundamental question, however, is whether the intervention itself is valuable. Despite its being well-received by physicians, perhaps the tool is just not an effective approach to educating physicians in communication skills. 

An even deeper assumption of this study is that the major problem with end of life care is poor communication by physicians. A very different perspective formed the basis of the Robert Wood Johnson’s program, Promoting Excellence at the End of Life, which focused principally on educating and empowering patients. This program, despite an enormous financial commitment and extensive evaluation, also failed, as evidenced by the 1995 SUPPORT study, “The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments.” The reality, I suspect, is that we need to simultaneously affect both physicians and patients if end of life care is to change. 

One more possibility to consider is that despite what patients say when given theoretical options such as "would you rather die at home or in the hospital?" or "when you are at the end of life, would you prefer comfort care?" in fact, when faced with the reality of a life-limiting illness, patients want all possible efforts at life-prolongation, whatever the personal cost, and they expect their physicians to provide them. Maybe they don't want to discuss options with their physicians. The language of obituaries, "he passed away after a long battle" or after a "heroic struggle" very likely reflects contemporary culture. We need to study what patients want when they are faced with an actual illness, not with an abstract possibility.

Us or Them?

Nearly 30 years have passed since Congress passed the Patient Self-Determination Act, enthroning advance care planning as an important part of care in the last phase of life. While the frequency with which patients designate someone to serve as their proxy in the event of incapacity has increased dramatically and the use of various planning instruments such as living wills and instructional directives has also risen, in most settings no more than one-third of patients with serious illness actually have conversations with their physicians about their preferences. 

Assuming that it’s a good idea for patients with serious illnesses to speak with their physicians about their goals of care, whose responsibility is it to raise the question? Does it make more sense to concentrate on educating physicians to communicate well about goals or to focus on empowering patients? 

Over the years, different initiatives have targeted one population or the other. The Robert Wood Johnson’s “Project on Death in America,” a multi-hundred-million-dollar project launched in 1994, focused to a large extent on prospective patients. The AMA’s program, “Education on Palliative and End-of-Life Care” (EPEC), also introduced in the 1990s, is targeted entirely to physicians (in fact, the “P” in the title used to refer to physicians: when first launched, the program was called “Educating Physicians on End-of-Life Care”.) More recently, a series of videos by Angelo Volandes of ACP Decisions aims to show patients and their families what various medical treatments entail, while the “Serious Illness Conversation Guide” from Susan Block, Atul Gawande and others at Ariadne Labs offers a checklist of questions to help physicians structure their discussions.

So, who needs more attention, the doctors or the patients? A new study in Health Affairs may offer some clues. I should point out at the outset that the Health Affairs article does not seek to weigh in on the question of whether to concentrate on physicians or on patients when designing interventions to promote advance care planning. The aim of the study, as indicated by its ponderous title, “Factors Contributing to Geographic Variation in End-of-Life Expenditures for Cancer Patients,” is to understand why some regions of the US spend so much more on care near the end of life than other reasons, with no discernible difference in outcomes. 

There are methodological problems with this study, as with all studies that start with death and work backwards—it is possible that although the people who died had similar outcomes (perhaps not surprising, as they all died), other people who weren’t considered in the study because they didn’t die were more likely to do well if more money was spent on them. Nonetheless, we have two groups of people with advanced lung or colorectal cancer on whom very different amounts of money were spent—in the lowest quintile, the average outlay was $10,131 and in the highest quintile, the average expenditure was $19,318). Was the decision to spend more coming from patient pressure or was it something that physicians were pushing for?

What the authors found was that in the high spending areas, physicians were less knowledgeable about treating dying patients (by their self-report), less comfortable providing care to patients near the end of life, and had less favorable attitudes toward hospice than their counterparts in the low spending areas. The high spending areas also tended to have more specialty physicians but fewer primary care physicians, as well as fewer hospices (per capita) than elsewhere. But—and here’s the key—patients’ beliefs about what they wanted were no different in high and low-spending areas.

All the statistically significant findings were in the domain of physicians, not patients:

Now, this finding does not directly translate into the question of who drives decision-making near the end of life in general and advance care planning discussions in particular. But it strongly suggests that physicians play an outsized role in shaping what happens to patients. Many patients don’t have pre-determined preferences; their values do not unambiguously determine what kind of medical treatment they should get. Or, if they do have some idea of what would be best for them, they are nonetheless strongly influenced by the views of their physicians. If “shared decision-making” is to work, both partners need to be informed and on board—and the physicians are particularly in need of some attention.

It's the Social Stuff, Stupid

Health care policy mavens are finally recognizing that we need to do a better job taking care of the sickest and costliest patients in American society. These are people on whom we spend a large percentage of our health care dollars without much to show for it, either in terms of standard health care outcomes or quality of life. Many of them have advanced illness. Many have multiple chronic diseases plus functional impairment plus extensive social needs. They’ve gotten the attention of people like David Blumenthal, who published an article called “Caring for High-Need, High-Cost Patients—An Urgent Priority” in the New England Journal in September and another article in JAMA sounding a similar call to action a few weeks later. They are the focus of the Coalition to Transform Advanced Illness, which produced a white paper mapping out a strategy for care and which just held a National Summit on Advanced Illness Care. Everyone defines the relevant population slightly differently and everyone makes somewhat different proposals for moving forward. One of the most creative is an idea that has been tried in England with good results.

This model gives high need patients a personal health care budget. The budget is determined by negotiation between the patient and the health care team. It “relies on a goal-setting and care-planning process in which patients and health care teams consider medical and social needs.” The budget allows payment for home supports and for technology that facilitates their remaining at home. It includes coverage for unusual and somewhat controversial non-medical needs such as a garden shed for someone with dementia so he could stay home because he had something to keep him occupied—the alternative was for him to become agitated and restless and quite likely require sedation and/or institutionalization. Interestingly, the budgets exclude access to primary care and hospital care, which are uncapped. Studies to date have found the system cost effective and associated with enhanced quality of life for the participants.

The result is not entirely surprising in light of the pioneering work done by Elizabeth Bradley and Lauren Taylor, popularized in a NY Times article in 2011 (and recently the subject of a book, The American Health Care Paradox.) What these researchers found was that though the US spends as much as 50% more than other developed countries on acute hospital care, imaging studies, lab tests, and other standard medical care, it spends much less than most other OECD countries on social services including old age pensions, disability, family support, and housing. If you combine the expenditures on both health and social services to give the true per capita spending in each country (with the amounts adjusted for GDP), it becomes clear why American health outcomes are so often inferior to those achieved in other countries: our total per capita spending is actually less than that of similar countries. The US over-invests in medical care and under-invests in social services.

A personal health budget that allows individuals to buy social services and other not strictly medical items that have the potential to enhance the coordination of care—a smart phone or a laptop, for example—is a way to compensate for America’s weakness. It fits into the prevailing ethos of individual control and of having “skin in the game.” 

If dressed up in sufficiently capitalistic sounding language, the proposal might even pass muster in a Republican-controlled federal government. It could finally transform care for the sickest, most vulnerable patients in the US health care system--and save money, too.

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