Medical Care: Fast and Slow

Victoria Sweet is the kind of doctor I wish my mother had. For that matter, she’s the sort of doctor I’d want for myself or my husband: she’s knowledgeable, she’s compassionate, she’s thoughtful, and she’s thorough. Her new book about her evolution as a physician, Slow Medicine: the Way to Healing, is a kind of prequel to her earlier, highly successful book, God’s Hotel: A Doctor, a Hospital, and a Pilgrimage to the Heart of Medicine, which tells of a remarkable, if a bit anachronistic institution, the Laguna Honda Hospital, where she worked for twenty years. Laguna Honda is a chronic disease hospital, a place where people who are too sick for a nursing home but not sick enough for an acute care hospital spend their days. But, in Dr. Sweet’s telling, it is also a place where physicians can practice medicine in a way that is seldom possible elsewhere, with the result that many patients stay at Laguna Honda even when they do become acutely ill, and some can be discharged to the community. God’s Hotel is a paean to “slow medicine,” the movement, like “slow food,” that challenges the contemporary tendency to focus on efficiency, technology, and science rather than deliberation, reflection, and art.

The new book, Slow Medicine, describes Dr. Sweet’s journey from psychology graduate student to staff physician at Laguna Honda. She explains, using many delightful case examples, how she came to understand what slow medicine is and what it has to offer. Her account serves to highlight the differences between slow and fast medicine in actual practice. While Dr. Sweet is at great pains to emphasize the importance of both fast and slow medicine, and in fact is herself able to move effortlessly from one to the other—to “think out of the box” by administering a surprising medication, the opioid-antagonist Naloxone, as part of an otherwise fast-paced resuscitative effort—the point of the book, as with its predecessor, is to glorify slow medicine. Without the deliberative, questioning, comprehensive approach to patients at which she excels, Dr. Sweet assures us, our highly regulated, protocol-driven technological medicine will disappoint.

But there is a problem with this view. It assumes that the reason so much of medicine has become fast medicine is that it has been commodified—“healthcare”  has replaced medical care and “providers” have replaced physicians. Dr. Sweet is partly right: device manufacturers and drug companies are in fact concerned with selling their wares, and economists do promote the reimbursement system for physicians and hospitals as the key to improving health outcomes. They view the interaction between a physician and a patient as a transaction rather than a relationship. But the regulations and the forms, the oversight and the accountability that she so maligns are a response to a reality that she glosses over: in times past, before medicine became so fast, quality was mediocre. It’s simply not true that in the good old days, physicians were healers and now they are technicians. In the bad old days, many physicians used remedies that didn’t work, even though scientific studies had shown they didn’t work, and failed to use treatments that did, even when there was ample evidence for the newer approaches.

What Dr. Sweet neglects to mention in the “slow medicine manifesto,” with which she concludes her engaging and provocative book, is that she can be a superb physician without the rules and the bureaucracy because she is very, very smart, and endowed with an outsize measure of both perspicacity and empathy. Victoria Sweet, as she reveals in her bio but not in the book, majored in mathematics at Stanford University (not an easy thing to do) while minoring in classics (quite likely an unprecedented combination). Then she was accepted into a PhD program in psychology at Harvard, but decided to go to medical school instead. When she became intrigued by Hildegard of Bingen, a nun in the Middle Ages who practiced a kind of holistic, herbal-remedy-based medicine, she didn’t just read what she could about Hildegard, she decided to pursue a PhD in the history of medicine (while continuing to work as a physician). 

Victoria Sweet has much to contribute to the world, and her description of her patients—how she examines them “from stem to stern” and, when she is puzzled by what she finds, spends hours in the library trying to figure out what ails them—is inspiring. But there’s a reason we have rules and regulations, and it has as much to do with the reality that most physicians aren’t like Dr. Sweet as it does with the commodification of medicine.

Right diagnosis, wrong treatment

This past week, frailty came out of the closet. The NY Times ran an op-ed about people who aren’t dying and who aren’t thriving. They’re old, they typically have multiple medical problems, and they need help with some of the basics we must deal with to get by every day. They are the people I write about all the time in this blog. Marcy Houle bravely brought this neglected population to public attention, telling a story about her orthopedic surgeon-father-with-Alzheimer’s disease who broke his hip. 

Kudos to Houle, a writer, wildlife biologist, and adult daughter, and to the Times for breaking a taboo and talking about frail elders. But while the diagnosis is correct, the treatment is not. The article asserts that what we need is more geriatricians. Houle's father saw a geriatric specialist who prescribed pain medication for him after he had a hip fracture, and suddenly he perked up, he was more alert and more himself. His daughter writes that he was able to “escape the land of the pink bibs,” her picturesque way of referring to the dining room table where he sat with others in his nursing home, staring into space. (In my father's nursing home, they have banned bibs, on the grounds that they are demeaning. Instead, the residents doze at the dining room table for hours, their shirts encrusted with the remains of their last meal, until it's time for the next meal.) In fact, Houle's father still had Alzheimer’s disease. He was still frail. His quality of life was better than it had been, which is terrific, but he was still in that zone between robust aging and dying, even if he had improved enough that he didn’t need to wear a pink bib. He benefited from the advice of a skilled physician with geriatric training, but for him to receive optimal treatment on an on-going basis, he will likely need more than a one-time geriatric consultation. And the kind of care that he, along with the millions of others like him, will need involves something other than just a good doctor.

We’re not going to transform the care of frail elders by increasing the number of geriatricians. As Houle rightly points out, there are fewer than 8000 geriatricians in the US and the number is decreasing, not increasing, even though by 2050, there will be an estimated 90 million Americans over age 65, of whom 19 million will be over 85. Geriatrics has been a specialty in the US since 1988—at least, that’s when the first certifying exam was offered, though that examination does not actually confer full specialty status. Passing the exam means receiving a Certificate of Added Qualifications in Geriatric Medicine, which doesn’t have quite the ring or the reputation of subspecialty status. It is analogous to subspecialties such as Nephrology or Cardiology (or for that matter, Palliative Care) without the cachet. 

The number of physicians taking the exam each year it is offered has been decreasing, reflecting the reality that fewer young doctors are seeking the extra year of fellowship training now required to sit for the test. Slots in geriatrics fellowship programs regularly go unfilled. It's just not a very attractive field to many doctors emerging from medical school and residency addicted to curing people and with a mountain of debt. Not only does Geriatrics pay poorly—internists who spend an extra year doing a geriatrics fellowship find their salary is, on average, lower than that of general internists who don’t do a fellowship in anything—but most of the healthcare systems in which geriatricians practice medicine are not conducive to providing high quality care. They should be interdisciplinary, they should have geriatric-friendly offices and examining tables, they should facilitate integration of care across multiple sites (office, hospital, rehab), and they should offer home visits. A few innovative programs do just that, including GRACE (Geriatric Resources for Assessment and Care of Elders), designed at the University of Indiana, and Guided Care, pioneered at Johns Hopkins; most practices do not.

We know how to remedy the situation. The Institute of Medicine got it right in 2008 when it issued its report, Retooling for an Aging America: Building the Health CareWorkforce. The IOM advocated a 3-prong strategy: enhancing the geriatric competence of the entire workforce (which includes lawyers, architects, and urban planners along with personal care attendants); recruitment and retention of geriatric specialists (which includes informal caregivers along with doctors and nurses); and improving the way care is delivered (redesigning the system to provide coordinated, multidisciplinary care). That's what we need to do. Some institutions are beginning the process:  the Faculty Program to Advance Geriatric Education, a novel curriculum in use at a number of medical schools, focuses on geriatricizing internists rather than on producing more specialists. 

Simply minting more geriatricians, even if we knew how to attract more physicians to the field, will not be sufficient. We all need to retool to face the coming demographic reality.

The Deciders

Shared decision-making has become something of a sacred cow in medicine, even though few physicians actually practice it. There is certainly evidence that patient participation in discussions about their health care and patient engagement in self-care lead to better outcomes, as well as to greater patient satisfaction. Promoting patient autonomy requires that patients play a role in shaping their fate. So some kind of patient involvement is decidedly a good thing. But shared decision-making, I argue in an article just published in the Journal of Medical Ethics, needs to be re-engineered for it to work in practice.

To be sure, not everyone means exactly the same thing by shared decision-making. But most of the definitions look like this one, offered by a leading proponent and expounder of the model: shared decision-making is an approach in which the patient receives information about available treatment options (including their risks and benefits), the clinician and the patient consider each one in light of the patient’s situation, goals, and preferences, and the two parties jointly select the best option.

The focus of all this deliberation is the selection of a treatment. Which treatment to provide is what the doctor needs to know. And the reason for involving patients in the decision-making is that, unlike in selecting which antibiotic to use in the treatment of pneumonia, which is strictly a technical decision, deciding whether to use chemotherapy or radiation for the treatment of cancer, or whether to use fourth line chemotherapy or hospice for treatment of cancer when it progresses to a very advanced stage, depends on the patient’s values. But what I suggest in my essay is that respecting patient autonomy requires eliciting those values. Once the doctor understands the patient’s goals, once he or she knows what is most important to the patient, that information constitutes data that goes into the decision about treatment along with other data involving outcomes, side effects, and probabilities. To ask the patient to draw conclusions about which treatment is best, rather than to have the doctor make a recommendation based on a whole raft of information that includes the patient’s input about goals and values, makes no more sense than providing a patient with data about antibiotics and then expecting a patient to select which antibiotic he should take for his pneumonia.

I argue that despite several decades of work seeking to overcome the barriers to shared decision-making—barriers such as cognitive biases, innumeracy, and health illiteracy—and despite evidence that sophisticated decision aids can help patients, most doctors and patients don’t like the conventional approach to shared decision-making and don’t use it. Even medical ethicists who believe strongly in honoring patient autonomy and who have traditionally advocated shared decision-making balk when they themselves or their family members develop cancer and the physician tries to implement shared decision-making. 

The approach I advocate doesn't go back to the older paternalistic model in which physicians decree and patients obey; rather, it reformulates the way shared decision-making takes place by suggesting that what needs to be shared is the process of determining the patient’s goals of care, not the process of deciding how to translate those goals, along with other highly technical information, into a treatment decision.

Goals, Goals, and then What?

Last week’s New England Journal of Medicine asked readers to weigh in on who should initiate a conversation about goals of care with the patient described in a clinical vignette, a 59 year old woman with very advanced breast cancer. Should it be the primary care physician? The oncologist?  Or should it be a palliative care specialist? Three short pieces make the case for each perspective. But the reality is that it’s not who initiates the conversation about the goals of care that’s important; it’s what’s done with the information.

The primary care doctor might be the best person to start talking to the patient about “what is most important to her” if that physician has a longstanding relationship with her. The oncologist might be the best person to “elicit... values and goals” if he or she has the requisite communication skills. The palliative care physician might be the optimal choice if there are other issues to address, such as symptoms or social supports. Ideally, any of the three candidates could discuss with the patient what matters to her, given the realities of her disease and its likely trajectory.

What the three respondents leave out is the next crucial step: going from goals to decisions about treatment. The primary care advocate says that the physician should help the patient “match future care and treatment to her goals” but is principally concerned with recommending use of the POLST form (physician order for life sustaining treatment) as a means of documenting her wishes. She doesn't explain how wishes, expressed in terms of goals, are to be translated into actual medical orders. The palliative care advocate argues that the patient needs “help understanding what to expect and how to manage it” along with symptom control and emotional support, and is chiefly concerned with touting the importance of palliative care as a specialty. She says nothing about who or how anyone will infer from goals what the treatment should involve. The oncologist argues that the physician should provide information about prognosis and elicit the patient’s values and is mainly interested in assuring that the specialist physician not abdicate this responsibility. He alludes to the physician’s “judgment and advice,” but then states that the doctor's role is to to help the patient "understand her prognosis and options, articulate her values, and match her medical decisions to those values." Evidently the patient is supposed to make the leap from goals to treatment, though with the physician's advice.

What should the process of moving from goals to a plan of action look like? Figuring out what treatment plan is most consistent with a patient’s goals of care requires technical understanding of the treatment and its alternatives. Suppose the patient decides that focusing on comfort is most important to her; it is the physician (most plausibly the oncologist, in this scenario) who is in the best position to explain whether oral opioids, an infusion pump, or radiation therapy are most conducive to achieving that goal. Suppose the patient chooses to focus on life-prolongation. It is the physician who is best able to determine which, if any of the available chemotherapeutic regiments, is likely to prolong life. Or suppose the patient concludes that remaining as mobile, independent, and clear-headed as possible is her primary concern. It is the physician who is able to say, based on knowledge of the benefits as well as the burdens of each alternative, how best to accomplish this goal.

Shared decision-making, the gold standard of care today, involves the active participation of both clinicians and patients. It is a dynamic process that requires give and take by both parties. It demands skill, rests on trust, and takes time. But it’s important to realize that the physician and the patient bring different kinds of knowledge and expertise to the dialogue. A division of labor between patients and doctors is perfectly consistent with respect for both parties. Just as patients have a unique understanding of what matters to them, physicians have a special understanding of what it is like to go through a course of treatment. Physicians can help patients articulate their goals but then it is up to physicians to conclude what those goals imply for treatment. Patients may reject the conclusions drawn by physicians—usually because they realize, when faced with the implication of their stated goals, that their description of what was important to them was not quite accurate. 

The translation of goals of care into actual therapy should be the physician’s prerogative--with the patient maintaining veto power. What matters isn’t so much who starts the ball rolling as how to shepherd it into the end zone.

A Matter of Opinion

In an op-ed in the New York Times this week, my fellow Harvard physicians Pamela Hartzband and Jerome Groopman argue that it’s pernicious to reward physicians for meeting quality standards. These measures of performance, they say, are “population-based and generic, and do not take into account the individual characteristics and preferences of the patient or differing expert opinions on optimal practice.” Really? Are there no practices that physicians should routinely follow if they are to practice good medicine?

The answer revolves around the concept of “preference sensitive care,” articulated by Jack Wennberg and Elliott Fisher of the Dartmouth Center for the Evaluative Clinical Sciences. Preference-sensitive care involves treatments that involve significant tradeoffs affecting the quality and or length of life. It is contrasted with effective care, which involves essentially uncontroversial treatments that are unambiguously optimal, or for which there are no viable alternatives. What Hartzband and Groopman are arguing is that essentially all care is preference-sensitive and there is no such thing as effective care. Therefore, they conclude, there is no way that we can legitimately grade treatment as inherently good or bad—it either reflects patients’ wishes—or physicians’ recommendations—or it doesn’t.

The view that there are no medical practices that constitute “effective care” and that all medical care is preference-sensitive strikes me as profoundly misguided. In 2003, RAND evaluated the quality of medical care in the US and found that only 55% of adult patients surveyed by telephone had received recommended medical treatment. These treatments included counseling on smoking cessation to patients who had had heart attacks and long-acting inhalers for people with chronic asthma. Did the 45% of patients who did not get standard treatment actually receive care that, while not consistent with expert recommendations, conformed well to their preferences? Could 45% of physicians have deliberately and thoughtfully chosen a course that deviated from expert recommendations because they had unique insight about what was best for their patients? Is there a plausible reason why physicians should not advise cardiac patients to stop smoking or patients with at least moderately severe asthma to use inhalers? I doubt it.

What about older people? Perhaps this is one population where most treatment is preference-sensitive. After all, as I have often argued in this blog, what makes sense for people who are frail, dying, or have dementia depends heavily on their goals of care. Even a seemingly clear-cut decision such as whether to have surgery for a broken hip might have a values component. A patient who is dying, for example, and whose only goal of care is his comfort, might choose to have bed rest and pain medication rather than the rigors of surgery. So are there quality indicators, those “metrics” that Hartzband and Groopman vilify, that apply to the geriatric population?

I looked at the most recent HEDIS (Healthcare Effectiveness Data and Information Set) measures, the set of indicators used by health insurance companies throughout the US to evaluate physician performance. These were designed by the NCQA (National Committee for Quality Assurance), a non-profit, non-governmental, independent body that relies on expert judgment and public feedback to determine quality indicators. It turns out that there are 5 HEDIS measures for older adults, addressing physical activity, pneumococcal vaccination, osteoporosis testing, medication management, and fall risk management.

The 5 domains were chosen for good reason. Physical activity plays a role in maintaining physical function as well as in staving off depression, cardiovascular disease, and other chronic illnesses common in old age.

Pneumonia is very common in the elderly and it’s a killer. When it doesn’t kill, it causes shortness of breath and confusion, often resulting in hospitalization, and may trigger other conditions such as a heart attack. Osteoporosis is responsible for tremendous suffering, mainly in the form of pain and impaired mobility, and predisposes to fractures. Falls, like osteoporosis, are the cause of an enormous amount of misery in old age. Nobody, and I mean nobody, wants to fall, just as nobody wants to have osteoporosis. Medications are commonly used by older people—on average, they take about 5 prescription drugs—and the more medications a person takes, the greater the likelihood of side effects.

If the targets are reasonable, are the specific quality indicators themselves? In general, the answer is yes. The pneumonia metric, for example, looks at the percentage of adults 65 and older who report ever having received a pneumococcal vaccination. The only people for whom getting a pneumonia shot doesn’t make much sense are those who are dying. And even patients who are dying presumably weren’t dying a year or two years ago, at which point they should have gotten immunized against pneumonia. Since the measure asks if a person has ever been vaccinated, the only older patients for whom this is inappropriate are those who develop a lethal illness at age 65 or those who regard life as worse than death (usually also people with a fatal illness) and who hope they will get pneumonia. There will always be people who refuse the shot out of a misguided belief that it will cause them harm. Some people will have religious objections—though I have yet to find an established religion that forbids vaccination (the exception is Christian Scientists but they aren’t likely to go to doctors in the first place). So physicians will rarely achieve a score of 100% on the vaccination metric. But the question is not whether vaccination can always be achieved; it’s whether vaccinating against pneumonia constitutes good medical practice.

It would be nice to have separate measures for patients  who are near the end of life, for those who meet the criteria for enrollment in hospice (whether they have chosen to enroll or not). At the very least, for patients with a limited life expectancy, the physician should be able to indicate that the quality indicators are “not applicable.” But apart from this concern, the quality measures strike me, on balance, as entirely reasonable.

According to a report just released by the NCQA, 54% of the US population (171 million people) now have health insurance from a plan that uses HEDIS measures. Over the last 3-5 years alone, 46% of the HEDIS measures have shown consistent, statistically significant performance gains. Surely this is progress. Some treatment decisions are preference-sensitive and for these cases, we should find a way to determine if physicians are eliciting their patients’ preferences and treating them accordingly. For those treatments that constitute “effective care,” the quality indicators make good sense.