You Only Die Once

The palliative care community has been rallying to defend itself this past week in the aftermath of a scathing attack in the New England Journal of Medicine.  A short article written by Scott Halpern, a specialist in intensive care medicine, asserts that none of the approaches used by palliative care clinicians, and he singles out advance care planning tools such as physician orders for life-sustaining treatment (POLST) and videos depicting CPR, have been proven to work. He implies that the only way to know whether they are effective is to use the same criteria as those employed by the FDA in approving a new drug: typically, large, multi-center, randomized clinical trials. Superficially, this seems advisable—or even, to use the language that Medicare invokes in determining what it will cover—reasonable and necessary. It is, after all, a plea for evidence-based medicine, and surely all right-thinking physicians are in favor of using scientifically supported treatment. But to propose that we can learn all we need to know about how to provide excellent palliative care from randomized, double blind, placebo-controlled trials, studies in which two groups are compared that are identical in all respects except for the intervention being tested, is sadly naïve and hopelessly reductionist.

Advance directives are promoted to enable patients to shape their own destiny by choosing, with input from their doctors, how they will be treated when they are seriously ill. Advance care planning seeks to protect patients by safeguarding their autonomy in the event of incapacity; it also aspires to help all patients prepare for the future, even those who retain their cognitive capacity. It’s difficult for anyone to think clearly in the throes of serious illness; prior consideration of the goals of care can provide a useful framework for decision-making under stress. But if the point of advance care planning is to encourage patients to think about their goals and preferences and to allow them to have a say in their care, then readily measurable outcomes—things like how much pain patients experience at the end of life or how many procedures they have or how long they live or what their care costs—are the wrong endpoints.

A randomized trial doesn’t make any sense in this setting: we cannot compare patients who participate in advance care planning (cases) with those who do not (controls) and measure whether the planners are more likely than the non-planners to get the kinds of treatment they want. Such a comparison presupposes that everyone actually knows whether he or she wants attempted CPR or a ventilator or third line chemotherapy in much the same way that people know whether they prefer vanilla or chocolate ice cream.  But choosing between vanilla and chocolate requires that people have already tasted both and arrived at a conclusion about which they like more. With end of life medical treatment, patients seldom have any prior experience on which to base a decision. They need help in imagining what they will go through with the various alternatives. And they can’t sample the different possibilities and then decide (though a limited trial is sometimes possible): they will only die once. Nor is it accurate to believe that all patients have well-formed preferences, based on their religious beliefs or values, and that advance care planning simply informs the medical profession of those preferences. In many cases, patients don’t have clear preferences. The essence of good advance care planning is that it elicits preferences—it helps patients figure out what makes sense for them, given the realities of their medical condition.

I’m not suggesting that all formal study of advance care planning is meaningless. Demonstrating that patients who go through a planning process are satisfied with their experience is important. So is comparing different approaches to figure out which one is best received (or perhaps which patients like which strategy). Assessing whether patients who engage in advance care planning are more knowledgeable about their options than those who do not is also useful. So are studies of the implementation of the advance care planning process: finding out whether advance directives (written documentation of the planning process) are available to physicians at the time when decisions need to be made and measuring the concordance between those requests made in advance and what actually happens. All these sorts of studies have been done and collectively make the case that advance care planning is effective.

Although Dr. Halpern longs for a large, randomized controlled study to definitively determine whether advance care planning “works,” he seems to be aware of the inaptness of his FDA analogy. He therefore proposes analyzing electronic medical records using natural language processing as a way to draw conclusions about the efficacy of various palliative care interventions, including advance care planning. Nice idea, but I’m skeptical. It’s not that I’m hostile to natural language processing or totally ignorant of its power: my son has a doctorate in computer science with a specialty in natural language processing and does remarkable work studying how machines can determine the meaning of text. My husband is the co-founder of a tech start up that makes extensive use of natural language processing. It’s a promising technique with many as yet undetermined applications. Maybe it will even prove useful in evaluating advance care planning. But surely we don’t know that. In fact, there are strong a priori reasons for thinking that mining chart notes for words that describe a patient’s experience won’t do anything other than measure how likely a physician is to ask patients about their feelings and to record their answers.   

You might think, reading the New England Journal article, that all of medicine, apart from palliative care, has been subjected to the standards demanded by the FDA. You would be mistaken. A great many of the tests and treatments used regularly by physicians have not been tested with any kind of rigor. But even more to the point, physicians still use their judgment in deciding whether to use a given drug in a given patient, even when that drug has been shown in a carefully conducted randomized clinical trials to be superior to the alternatives. Randomized clinical trials are typically carried out in patients who have nothing wrong with them except the condition being studied. Those patients are rarely over age 65. That vaunted FDA-approved pharmaceutical is then used in 85-year-old patients with multiple chronic illnesses. Maybe it will work just as well. But maybe it won’t work at all or will even cause serious side-effects. It might hasten death. Does Dr. Halpern only use treatments in his ICU that have been demonstrated in a randomized trial to be effective—and to be effective in a patient with exactly the combination of heart failure and diabetes and dementia that the patient before him has?

Of course we need to evaluate the tests and treatments that we use in patients. But we should use whatever method is most appropriate for the situation we are studying. Sometimes it will be a randomized clinical trial. Often it will be a combination of other kinds of studies, some of which may be qualitative. Whether we conclude that the test or treatment should be used will depend on the preponderance of the evidence. Only rarely will we know, beyond a reasonable doubt, that we are doing the right thing.

The Quality of Death

Five years ago, The Economist commissioned a report on the quality of death throughout the world. Now, the magazine has issued an all new report on the same topic, expanding and improving its methodology and increasing the number of countries studied from 40 to 80. Whenever this kind of global study is released, my interest is in how the US performed and in what we can learn from other parts of the world, much as I wrote about in my recent posts on the WHO Report on Ageing. And as usual, the interesting part is not so much the bottom line—the US came in 9^th among the 80 countries surveyed—as the specific strengths and weaknesses that determined the bottom line.

The report broke down its assessment into 5 domains: palliative and health care environment; human resources; affordability; quality of care; and level of community involvement. The first 3 areas each contribute 20% of the overall score, quality contributes 30%, and community involvement 10%. If we look at each of these areas, what we find is that the US sub-rankings were 6, 14, 18, 8, and 9, which is to say we were dragged down by a relatively weak supply of palliative care professionals and by high costs. In the areas of national policy towards palliative care, quality of care, and public awareness, we were strong but not superlative. In other words, while we have made enormous strides in training a palliative care workforce, developing fellowship programs for physicians, nurse practitioners, and social workers, we have a long way to go, given the size and aging of our population.

What is particularly noteworthy is the case of Taiwan, which the report regards as a model to watch and to emulate. Taiwan ranks number one in Asia, and #6 overall. It has successfully increased the number of hospices by 50% between 2004 and 2012; and it has markedly changed its culture to encourage discussion of prognosis. In Taiwan, everyone has a health insurance card that includes key medical information, and older individuals now often include their code status on this card. In addition, the country is piloting a program to monitor end of life care in rural areas using smartphones and tablets. It has published resources for caregivers in six languages. And it allows patients and their caregivers to Skype with their doctors.

Taiwan is not the only country that out-performed the US (the other 8 are the UK, Australia, New Zealand, Ireland, Belgium, Taiwan, Germany, and the Netherlands. At least in healthcare, particularly for older people and those near the end of life, American exceptionalism is a myth. We can do better, and we should.

The How of WHO--the Time is Now

The best part of the WHO report, “World Report on Ageing and Health,” is the stories. After reading a long litany of the weaknesses of the long term care system (or non-system) all over the world, it’s inspiring to learn of a model that actually works.  And what’s particularly noteworthy is that some of the programs instituted in the developing world have something to teach us in the US. 

The WHO report speaks somewhat scornfully about the high tech approaches to caregiving that are the talk of the town in the west—robotic caretakers and remote monitors that are likely to be too expensive for widespread use. Instead, it touts an interactive, web-based support tool for caregivers of people with dementia. It can be accessed via computer, tablet or, what is most useful in the developing world, smart phone. The educational portal offers eight lessons for caregivers, complete with homework, and provides a coach to grade the homework. 

Another surprise: Turkey has developed a system of integrated health and social care (the only truly integrated forms of senior care in the US are nursing homes and PACE, a small program providing medical and social services to older individuals who have Medicare and Medicaid and are nursing home eligible). In the Turkish system, which is free to families and is funded through taxes, municipal budgets, and premiums paid by workers and employers, the Ministry of Health provides health care at home, delivered by a multidisciplinary team. The ministry of Family and Social Policies offers social support in multiple sectors. And municipalities provide services such as home health aides and home repairs.

Creating an “age-friendly” world sounds daunting since it involves revamping transportation and urban planning (traditionally government functions) as well as redesigning jobs (typically a private sector endeavor) and preventing elder abuse, physical, mental, and financial. The Intergenerational Clubs in Viet Nam are reportedly very successful and represent a step in the right direction. A City for Seniors in Geneva serves as the ultimate senior center, providing opportunities to socialize, to take training courses, to participate in seminars and debates, and to access information. Norway has adopted “universal design,” going beyond ramps and elevators for those with disabilities to maximize accessibility and usability for older people. And there are a few programs in the US that made it into the WHO report, examples of initiatives that are worth promoting such as Experience Corps, which places volunteers in elementary schools to stimulate reading.

WHO’s "next steps" form an ambitious program. The report identifies four priority areas: aligning the health system with the needs of the older population (shifting the emphasis from acute to chronic diseases and from individual doctors and nurses to interdisciplinary teams); developing a long term care system (involving both home care and institutional care); creating an age-friendly environment (re-making much of the societal infrastructure); and improving the way we measure success (to facilitate monitoring and understanding).  

A number of countries have taken the first steps in the right direction: Age Well is a community-based peer-to-peer support program in Cape Town, South Africa. Older individuals are trained to provide companionship and social support for others in their community, and to identify needs and make referrals to the relevant health care or social service agencies. The program reports 60% improvement in measures of well-being among participants. Live and Age Together (Vivre et Vieillir Ensemble) is an ambitious undertaking in Quebec that brings together local and national government, the private sector, and families to develop a comprehensive approach to support older adults.

We can do all that WHO advocates. We can do it for the right reasons—because it would improve the well-being of a large and growing segment of the population; or for the wrong reasons—because it would, on balance, be less expensive to do it than not to. But that’s the beauty of the WHO proposal: it should appeal to the left and the right, the rich and the poor, the young and the old, in all countries, whatever their politics.

I stumbled on it purely by accident. I was looking for a picture to illustrate "diversity" for a talk I am preparing, and I seemed to remember that the World Health Organization had some beautiful photos in its earlier reports. Maybe what I liked best about those photos is that they capture the beauty and the humanity of their subjects without insisting that everyone smile for the camera. As it turns out, I didn't find what I was looking for but I discovered that on the very day I was searching, the WHO released a brand new report. It doesn’t have a very snazzy title—it’s called World Report on Ageing and Health—but it’s a remarkable and inspiring document. 

Not surprisingly, none of the major US newspapers breathed a word about its release. Maybe the reporters just haven’t had time to go over it: it is, after all, 260 pages. Or maybe they figure that what’s happening in the rest of the world isn’t terribly germane to the US. Perhaps--and I suspect this is the real reason--the media don't want to think about aging. In fact, the report is brimming with fascinating observations and interesting insights, many of which are relevant to the United States both in terms of our own aging population and in terms of national security. There is so much in here worth commenting on, that I think I will devote more than one blog post to the report. Let me begin by sharing some of the most astonishing things I learned in the first half of the report.

The report begins by suggesting that rather than thinking about expenditures on older people as pure costs, they should be seen as investments. It points to a study done in the UK a few years ago which calculated that if you put everything that the government spends on old people in one column (pensions, health care, other social welfare programs) and you put the contributions of older people in another column (taxes, consumer spending, work), you come up with a positive balance. At least in England, the net contribution of older people amounts to 40 billion pounds per year.

One of the most startling differences between this new report and its predecessor is that today's version defines healthy aging as the process of developing and maintaining the functional ability that enables well-being in older age. iI like that. All health care systems in all countries, the authors argue, should have as their single goal fostering the functional ability of older people by supporting and maintaining their intrinsic capacities and by enabling those with diminished functional capacity to do the things most important to them. This is a marked improvement, in my view, from the last major WHO report, Active Ageing, which came out in 2002, that talked about "optimizing opportunities for health." Then, health was the ultimate objective; now, health and healthcare are means to an end and that end has to do with the ability to function in society.

The description of what health in older age looks like in different countries is both intriguing and sobering. My attention was drawn to a single chart showing the percent of the population age 65-74 and the percent age 75 and older with limitations in one or more activities of daily living, by country. Only a handful of countries were listed. But the gap between the worst off and the best off was shocking—as was the revelation of who occupied the extremes. In first place is Switzerland, with fewer than 10% of the 65-74 year olds suffering a limitation in function and fewer than 20% of those over 75. In last place is Russia, with 60% of the younger old and 80% (that’s not a typo) of the older old reporting at least one ADL deficit. I haven’t quite figured out how this relates to Putin’s policy in Ukraine and Syria, but I suspect there’s a connection. There's something very rotten in the state of Russia.

On a more optimistic note, the chapter on “Health Systems” gives some uplifting examples of countries that have introduced novel approaches to improving the well-being of their older populations. Ghana is making an effort to harness its well-established system of community health workers to meet the needs of older people. And Brazil has begun integrating aging into its national family health strategy: it is using multidisciplinary teams comprised of physicians, nurses, and physical therapists, psychologists, nutritionists, occupational therapists, and others to work in community centers and to go into patients’ homes to deliver care.

More to follow…

The best is yet to come

For my discussion of the just-released world report on aging (or as the British spell it, ageing) and health, see upcoming blog post