Doctor-patient sex and professional self-regulation

The topic that has attracted the largest readership on this blog is doctor-patient sex. In the past 10 years the 30 posts I've written on the topic have received 75,000 hits. An article in today's Boston Globe focuses on an aspect I've discussed only briefly thus far - professional self regulation.

The story concerns a complaint from Ms. Lisa Grover that Dr. Melvin Rabin, the psychologist she sought out when her marriage broke up, drew her into a sexual relationship. Grover's allegations dramatize the way "boundary crossings" like calling the patient at home "just to talk," calling the patient a "special person," and hugging at the end of the appointment, can lead, over time, to "boundary violations" like sex. Apparently Grover brought a malpractice action against Rabin which, the article reports, was "settled for an undisclosed sum."

In February 2016 Grover complained to the Massachusetts Board of Registration of Psychologists, but the case is still "open" and Dr. Rabin's license is still unrestricted.

A core component of the implicit contract between the health professions and society is that in exchange for the autonomy and trust society gives to the professions, the professions will regulate themselves with regard to quality and integrity. Two years is much too long for a professional board to leave a serious complaint like Ms. Grover's unsettled.

In dealing with complaints of the kind Ms. Grover brought, a board must consider three values:

First and foremost, safety for patients. If the board believes Ms. Grover's accusations, it should have suspended Dr. Rabin's license. A therapist who acted as Ms. Grover describes should not have an unrestricted license, which allows unrestricted, unmonitored access to patients. What Ms. Grover describes, if true, is very serious misconduct.

But second, a board must also recognize that complaints are not necessarily true. The board must consider fairness to the accused.

I know this first hand.When I joined the Harvard Community Health Plan practice in 1975, one of my first patients was a sensitive and vulnerable young woman with a mild autism spectrum disorder. The treatment was proceeding well until I cancelled an appointment because I was going away. My patient contacted the psychiatry board to complain that I had molested her. Psychologically my cancellation felt to her like a "molestation." By the time I heard from the board my patient and I had resumed meeting and the treatment was again on track. She explained that she had been upset by the cancellation and apologized for what she said to the board. I didn't appreciate at the time just how serious a threat a false accusation could be.

To the credit of the Boston Globe, the headline to the article refers to an "alleged betrayal." But if the Board does not believe Ms. Grover, it should have closed the case by now. Two years is too long for the case to be in limbo. A false accusation is a serious injury to the clinician.

Finally, a professional board should conduct itself in a way that fosters trust in the profession. The story reported in the Boston Globe does the opposite.

(In addition to the Boston Globe article describing Ms. Grover's allegation, readers may be interested in an interview with Dr. Rabin in which he describes himself and his approach to therapy.)

Chronic pain, Identity, and Health System Ethics

Prior to this past year my experience of pain had been with acute episodes. An especially painful and amusing episode occurred when I started a new job at the Massachusetts Mental Health Center after residency and fellowship. Between painting rooms in the house we were moving into and carrying boxes hither and yon I threw out my back. I lay on the floor, hardly able to move. A helpful neighbor called his PCP who came to the house. (It was 1970 and house calls actually happened.) I could see that he was regarding me with suspicion. Perhaps I was a newly arrived addict who was seeking an opiate fix. And when I started my new job, in some of my meetings I again lay on the floor, giving a rather odd impression of the new hospital ward supervisor.

The pain was severe - perhaps 9 or even 10 on the ubiquitous 0-10 scale. But I knew it would clear up before too long, and it didn't burrow into my psyche and sense of self. In the (slightly altered) words of the old spiritual, it "pained the body but not the soul."

Not so with the chronic pain I wrote about 3 days ago! It's not as severe as the back spasm, but the (a) chronicity and (b) uncertainty about if and when the pain will go away has (c) taught me lessons I only understood from the "outside" during my years of practice and (d) challenged my sense of identity.

Like many physicians, my default mode is to help others. Over the years, when asked "how are you?" my typical answer has been a hearty, upbeat "excellent!" So for the simplest of tasks - taking out the garbage and even putting on my pants (I have to protect the toes from contact with the pants leg - not easy to do) - to become difficult or impossible is a shocking change. My wife has taken over my "chores" cheerfully and uncomplainingly, but I feel ashamed at (my words) "not doing my part."

Before the foot/ankle/lower leg problem set in, I took an extended walk whenever the weather permitted, and played tennis with friends weekly. Sacrificing these activities isn't just a matter of losing forms of "recreation." Being an active, out-of-doors person has been part of who I am. These losses take another bite out of my sense of identity!

In a similar vein, I enjoy being at both of the two offices I use. But parking and walking to the office is difficult, and I can actually do most of my work from home, so I have been largely invisible at my work sites. My "productivity" may not be reduced, but collegiality is down, and loneliness is up.

Coping mechanisms are crucially important and put to the test. As an example, the toe/foot/ankle/lower leg pain is worst at night. When I try to sleep it wakes me up every 60-90 minutes. My initial reaction to these awakenings was anger, but that accomplished nothing useful and made it harder to get back to sleep. By an act of will I substituted humor - laughing at myself sitting in the dark massaging my foot and hobbling around to reduce the pain. Rather than saying "why the bleep is this happening to me" I say various forms of "what a ludicrous situation this is!"

This is a blog about organizational ethics. Readers may reasonably ask "what on earth does a painful foot and difficulty taking out the garbage have to do with organizational ethics?"

A lot!

Nowadays, organizations toot the horn about their commitment to "evidence based practice." Since the Hippocratic era, the practice with the strongest evidence of effectiveness is empathic listening. Organizations can encourage this stance or - all-to-often - squelch it with bureaucratic demands and processes that treat patients as targets for efficient "throughput."

Time pressure is a fact of life everywhere in health care, but there are skills we clinicians can develop to use time well, rather than having time use us. When I joined the mental health practice at the Harvard Community Health Plan HMO in 1975, the insurance limited the number of appointments we could have with our patients. Some clinicians put this limit front and center when they met new patients, by stressing what they couldn't do. Wise clinicians, however, approached new patients differently - "Let's first figure out what you need, and then see how we can best meet those needs." The HMO encouraged me and my colleagues to struggle with the challenge of remaining true to our mission while doing what was needed to make the necessary margin to keep the program going. (See here and here for examples of that work.)

Medical care ultimately comes down to the patient-clinician dyad, but more and more often the dyads occur in an organizational setting. Empathic listening is carried out by individuals, but organizations can encourage or thwart this deeply human process. That's where organizational ethics comes in!      

(A friend who knew about my left foot problem brought to my attention a superb article by the distinguished primary care physician Thomas Bodenheimer - "Lessons From My Left Foot." It's available at  http://www.annfammed.org/content/8/6/550.full.pdf)

Health System Ethics and my Left Foot

I haven't written a post for more than 6 weeks. My left foot/ankle/lower leg are a big part of the reason for the lapse. So I decided to write about my experience and connect it to the topic of this blog -  health system ethics.

Many physicians have written about their own experiences of illness. Here's my  story.

In the fall of 2015 my left big toe itched. I didn't pay much attention until it began to hurt and develop redness. My primary care physician (PCP) was on a medical leave for a serious medical problem, so I saw another physician in his practice group. By that time I had red blotches on my foot as well. The physician had two hypotheses:

   (1) It might be an early stage of "vasculitis" (inflammation of the blood vessels). She did some blood tests, all of which were normal, and referred me to a rheumatologist (a specialist in autoimmune and musculoskeletal conditions).
   (2) It might be a circulatory problem, and she referred me to a vascular surgeon.

The  rheumatologist did a thorough evaluation with many blood tests. Except for two minor abnormalities, all were normal. He concluded that I did not have a systemic illness.

The vascular surgeon also did a thorough evaluation and a CT scan to visualize blood flow to my legs and feet, which showed adequate circulation with no visible blockage.

Lesson # 1: The specialists were excellent, but when they didn't find a problem within their purview, I was left with a "what now?" question. Given the absence of my long term PCP I decided to be my own case manager. I believed more than ever in the importance of primary care as the key hub of the health care system.

The pain was better during the summer. Perhaps the warmer weather explained it. Whatever the explanation, I enjoyed the summer.

In the fall of 2016 the areas of red discoloration spread onto my left ankle and lower leg. Happily, my PCP returned to practice from his long term medical leave.

Lesson # 2: Apart from all of the valuable things PCPs do, at least for me, and I would guess for many others as well, there is a powerful placebo effect from having a solid relationship with a clinician one trusts for skill, knowledge, and a genuinely caring attitude.

On examining me and hearing my history, my PCP said - "This is really weird. I have no idea what's going on. I think we should involve a dermatologist." A couple of weeks later I saw a dermatologist who suggested a few possibilities and did a biopsy. The biopsy came back "non-specific" - i.e., it didn't tell us anything. She thought we should get a second opinion.

It took several weeks for this to be arranged. The very knowledgeable consultant I saw put forward some additional possibilities and recommended repeat biopsies. These showed (a) tiny clots in the small blood vessels and (b) no signs of an inflammatory/autoimmune process.

This told us what was happening, but not why it was happening.

Lesson # 3: Humility is a virtue. My PCP acknowledged having no idea of what was going on, but did have an idea of what to do next. The first dermatologist suggested getting a further consult within her own specialty. Their non-arrogance paid off!

On the basis of seeing blood vessel clots, the second dermatologist suggested that I  see a hematologist, who put together (a) the presence of clots and (b) the fact that in the previous month I had a mild elevation of my platelets (blood cells involved with clotting) that was (c) a bit higher on repeat measure. Before our appointment she had me do further blood tests. We'd been colleagues in the past and she sent me the following email:

"I had you do some special blood tests beforehand and, indeed, you have a JAK2 mutation which is present in people with Polycythemia Vera and Essential Thrombocythemia.  This likely explains your elevated platelet count. I will be suggesting starting Hydroxyurea pills – very easy and well tolerated, to bring down the platelets and hopefully prevent more problems in the future."

Lesson # 4: In the previous 14 months I'd seen 10 different physicians. Without good coordination, this would be a surefire recipe for chaos. When  my PCP returned he carried out the coordination function very well, but throughout the 14 months the secure email system my practice group uses was invaluable. I could write to one physician and copy the note to others. This aspect of the electronic infrastructure really paid off.

I've started the new medication (Hydroxyurea), but I'm very aware that we're still proceeding on the basis of hypotheses. Blaming the elevated platelets is a plausible explanation, but two elements don't fit. A year ago, after the problem was clearly underway, a blood test showed normal platelets. The hematologist speculated that "perhaps your platelets are more 'sticky' and clot more easily." That could be true, but it's a speculation. And if the platelets are the villains of the situation, why are the symptoms limited to my left foot/ankle/lower leg?

Lesson # 5:  In 1865, the French physiologist Claude Bernard, who, among other discoveries formulated the concept of homeostasis, wrote “physicians make therapeutic experiments daily on their patients . . . . [M]edicine by its nature is an experimental science, but it must apply the experimental method systematically.” When faced with illness and suffering, patients and physicians want certainty. But as Bernard recognized 150 years ago, certainty of the kind we can have in mathematics is not to be had in medicine. Patients, physicians, and the public, need to learn how to work with and live with the absence of bedrock certainty.

 In this post I haven't touched on the powerful psychological impact of chronic pain and disability. I'll do that in future posts. If you've read this far - thank you for your attention!

Robber Baron Capitalism victimizes Mother Theresa

Yesterday the Senate Special Committee on Aging held a feel-good hearing at which the Senators excoriated Michael Pearson, the soon-to-be ex-CEO of Valeant Pharmaceuticals, for rapacious drug pricing, and hedge fund manager William Ackman for making Valeant a darling of the Wall Street world.

It's a valuable truth about organizational life that every system is perfectly designed to achieve the results it actually produces. The two articles cited in the previous paragraph and a third about "The Complex Math Behind Spiraling Prescription Drug Prices" provide insight about how the current U.S. system inevitably produces stratospheric drug prices. Here's how it works:

1. The first step involves rewarding CEOs lavishly for short-term profits. It's important not to look too deeply into how the profits are made, as long as the method is - or appears to be - legal. My my previous post  about Michael Pearson's compensation shows how this first step towards moral corruption can best be carried out.
2. One variant of step two involves identifying a valuable old drug that is priced affordably. Make sure it has no competitors. Then, buy it and jack up the price by hundreds of percents. That's the route Michael Pearson at Valeant and Martin Shkreli at Turing Pharmaceuticals took.
3. As an alternative, identify a serious medical condition for which there is no effective treatment. Develop a new, better approach. This is the path of discovery and developing genuine new value. Up to the the point of setting a price, this step is morally admirable.
4. Recognizing that (a) we control a vital component for human health, and (b) health organizations are committed to human health, (c) set a stratospheric price, since (d) we have the health system over a barrel. 
5. If whoever is purchasing our stratospherically-priced drug protests, accuse them of (a) rationing care, (b) stifling innovation, or best (c) both.

This is how the fine-tuned medical-industrial complex facilitates runaway drug costs. Historically, providers have been governed by Mother Theresa's ethics - do what is needed for human health no matter what it costs. The Michael Pearsons and Martin Shkrelis may be acting within the law, but they're not acting within the ethics of care. Unlike Pearson and Shkreli, who simply recycle established products at new prices, pharmaceutical companies that develop treatments that create new possibilities for human healing are participating in the health care calling. But when they charge astronomical prices, they're joining with the Pearsons and Shkrelis in robber baron conduct.

Hard bargaining helps, but it isn't likely to be enough to lead to fair pricing. My guess is that some form of regulation or other change in law is likely to be required. How to do it is beyond my pay grade. But happily, we in Massachusetts elected Elizabeth Warren as Senator, and consumer protection is her specialty. I'm going to send this post to her office with a simple message: PLEASE HELP!

Insurance Coverage for Telemedicine

Last week the Harvard Pilgrim Ethics Advisory Group (EAG) devoted its quarterly meeting to the topic of "Developing a Framework of Ethics for Telemedicine." I chair the group and write a consultation report based on the discussion. Four of the group's recommendations are relevant for all health insurers and health plans, so I'm presenting them here:

1.  Nationally, telemedicine is evolving rapidly in a somewhat helter-skelter manner. The EAG recommended that insurers should focus coverage on areas in which telemedicine can minister to significant health needs. Fitbit and other health trackers are popular with consumers but do not reflect the kind of “need” that health insurance should cover. In contrast, services for patients who cannot access important care because of geography or limited mobility and services that maintain or improve quality while reducing costs provide real value.
2.  Patients and physicians both see continuity of care as a crucial health care value. But patients also value access and convenience, which have driven the uptake of telemedicine. Ideally, insurers will find ways to reconcile these potentially conflicting values, as by requiring telemedicine providers to foster communication with the patient’s primary care physician if the patient gives permission. The group imagined technological “fixes” that would encourage patients to be active participants in establishing continuity of care, as by having the telemedicine provider’s note go to the patient, to be shared with whomever the patient wishes to inform. 
3.  One of the questions the EAG had been asked was: "Should Harvard Pilgrim be a leader in providing telemedicine coverage or wait for well established quality information and support from the relevant professional organizations prior to offering access?" The group saw the question as too either/or. Telemedicine is at once (a) a promising innovation that is (b) energized by societal trends in use of technology in other sectors of life, but (c) uncertain in its impact on cost and quality of care. It encouraged Harvard Pilgrim to be active in the area of telemedicine, but do so in a try it/evaluate it/fix it/or drop it manner, in order to learn from experience and contribute to knowledge about the emerging trend.
4.   A Google search for "telemedicine providers" brings up a dizzying array of links. There is a lot of money to be made, and the marketplace is in a feeding frenzy. Given the certainty that consumers will be exposed to services ranging from high quality/high value enterprises to bottom feeders hoping to take the money and run, the EAG recommended that insurers only cover services from vendors who share and apply the same values with regard to improving quality, reducing overall costs, and supporting continuity of care. This revenue prediction table illustrates why the marketplace offers patients both promise and risk: 
5. 
   

   

   SKYROCKETING REVENUE PREDICTIONS FOR TELEMEDICINE!

To learn more about the Harvard Pilgrim Health Care ethics program, see previous blog posts here and here, and this article in Health Affairs

Retail Clinics, Health Care Costs, and Medical Ethics

The March issue of Health Affairs includes an report by Ateev Mehrotra and colleagues about the impact of retail clinics on health care utilization and cost. His team used insurance claims from Aetna to study the question of the degree to which retail clinic visits replace physician office and emergency room visits or represent additional utilization.

In-store clinics like the 1,100 CVS Minute Clinics offer prompt attention for minor ailments and preventive care. They're convenient and cost less than physician office visits and vastly less than an emergency room visit. Health policy gurus have hoped that they would improve access and reduce costs.

It looks as if the hopes are half fulfilled. The clinics do improve access for minor conditions and as such are a welcome service. According to the Convenient Care Association - the trade association for retail clinics - to date consumers have made 35 million visits to these entities. But Mehrotra and colleagues found that 58 percent of the visits appeared to represent new utilization, with the result that covering retail clinic visits cost Aetna $14 more per patient per year.

The medical group where I and my family have gotten our care for decades operates its own internal version of retail clinics. During daytime hours it's possible to be seen for same day appointments and advance practice nurses are available 24/7 by telephone. When I've used the service my primary care physician has received immediate feedback via the electronic medical record. In one instance I would have gone to an emergency room if urgent care had not been available. And my impression from what I've read from Kaiser Permanente is that in the setting of an integrated group practice, walk-in capacity is cost effective as well as popular with patients.

So what's the big lesson from the Health Affairs report?

For me the study implies that our recurrent hope for a magic bullet that will reduce cost without integrating the care system and creating a budget for it is a pipe dream. Retail clinics have a lot to offer, but they won't solve our cost problem. Telemedicine also has a lot to offer, but it won't do the cost containment job for us either.

Instead of imagining that a magic bullet will solve the cost trend without our making hard choices, we instead need to bite the bullet and create budgeted care systems like the much maligned not-for-profit HMOs from past years. 

Accountable Health Communities and Primary Care

Last month CMS announced an "Accountable Health Communities" initiative:

The Accountable Health Communities (AHC) model addresses a critical gap between clinical care and community services in the current health care delivery system by testing whether systematically identifying and addressing the health-related social needs of beneficiaries’ impacts total health care costs, improves health, and quality of care. In taking this approach, the Accountable Health Communities model supports the Center for Medicare & Medicaid Service’s (CMS) “better care, smarter spending, and healthier people” approach to improving health care delivery.

I think the initiative is a very big deal!

The US health system is badly out of whack. 95% of the trillion dollars we spend on health care each year goes for acute medical treatment, but 60% or the preventable deaths are caused by "social" factors. In the brief appointments that are too characteristic of medical practice, it's difficult for physicians to learn about a patient's social circumstances. And I know from the brilliant and idealistic primary care residents I teach that they feel their training has not prepared them to know what to do in response to the stories they hear from their patients.

I believe the disconnect between what typical medical care involves and the existential circumstances of our patients' lives is a major contributor to the high rate of "burnout" and "demoralization" among physicians. When physicians and patients feel deeply connected, medical interventions are more effective and both parties experience intrinsic satisfaction. Sadly for all, this connection often does not occur.

Dr. Heidi Behforouz, a colleague at Harvard Medical School, has written usefully about "rethinking the social history." Here's her diagnosis of the problem young physicians like those I have the privilege of working with encounter:

Physicians often see patients with complex social situations as a burden — requiring extra work that is neither reimbursable nor central to our core clinical expertise. Unfortunately, we inculcate these attitudes in trainees, implicitly and explicitly, perhaps because  of our discomfort with hearing difficult stories or our sense of powerlessness or incompetence in addressing these root problems. Whereas biologic pathology may present specific targets for intervention, social or structural pathology is difficult to treat.

 The CMS "Accountable Health Communities" initiative is designed to explore organizational models that foster a stronger connection between the "medical" and "social" aspects of our patients' lives. Strong links to community resources, new skills for understanding social contexts, and improved tools for recording social information in a useful form, will all be required.

When health organizations move from being strictly "medical" to becoming "health communities," we'll have created settings in which medical, nursing, and other health professional students can learn how to do what William Osler urged a century ago: "the good physician treats the disease; the great physician treats the patient who has the disease."

Cooperation vs Competition in Health Care

I've long admired the Cleveland Clinic, so I hope this paragraph from a New York Times article on how drug shortages force rationing decisions, turns out to be incorrect:

The Cleveland Clinic has an advanced compounding room where workers swaddled in disposable gowns, bouffant caps and blue gloves mix up remedies from raw ingredients. During a shortage of papaverine, a drug used for surgery on blood vessels, the clinic produced its own version. When other hospitals began asking about it, Dr. Snyder said he had to tell them, “It’s a franchised recipe we can’t give out.”

 If "franchised recipe" means the Clinic wants to keep its way of producing papaverine secret, it's hard to see how that policy could be ethically justifiable.When a clinician or institution has figured out how to help patients in a better way, the new approach should be shared with others. The overarching goal of the health system is improved health for the entire population. We encourage competition to stimulate local improvements, but once achieved, those improvements must be shared. Competition in health care is justified when it serves population health.

The Cleveland Clinic already has a reputation for clinical excellence. Sharing its "franchised recipe" will enhance the respect the Clinic receives. As such, sharing the recipe would be both good ethics and good strategy. Truly a win/win outcome.

A Surgeon Explains and Defends Simultaneous Surgery

In the continuing discussion sparked by the Boston Globe Spotlight Team's reporting on simultaneous surgery, Dr. Alexander Langerman, a head and neck cancer surgeon from Vanderbilt, wrote an informative piece explaining and defending how he conducts the practice. I, as a non surgeon, found his description of the clinical aspects of the practice very informative, and I encourage you to read his article here.

I was especially happy with Dr. Langerman's discussion of informed consent:

If you’re a patient, in your first visit with a surgeon, ask about the plan for your case, the surgeon’s strategies for trainees, and the way the surgeon handles his or her surgical schedule. I encourage you to get to know any residents who may be involved in your operation; they are a highly valuable second set of eyes who have already completed college, medical school, and often years of training so their ideas, questions, and participation elevate care. I would argue you do not need to require the absence of trainees or the continuous presence of the surgeon but rather a well-thought-out plan that has your best interests in mind.

If you are a surgeon or part of a surgical team, discuss your plan with your patients. You should let them know whether a trainee will be participating in or handling a portion of the procedure, and you should let them know if you are going to be out of the room.

If Dr. Langerman's surgical colleagues had all followed his wise guidance, the practice of simultaneous surgery would not have had the shocking impact it had when the story broke.

New Massachusetts Regulations on Simultaneous Surgeries

Two weeks ago I posted about the practice of simultaneous surgeries. It had been the focus of a Boston Globe Spotlight series. Two days ago, the Massachusetts Board of Registration in Medicine - the body that regulates medicine on behalf of the state - ruled that surgeons must record when they leave and reenter the operating room. Nurses currently do this. At many hospitals, surgeons don't.

Simultaneous surgery raises two central questions: What is its impact on patient safety and surgical outcomes? And, what is the impact on patient and public trust of physicians and hospitals?

Dr. James Rickert, president of the Society for Patient Centered Orthopedics, correctly identified informed consent as the central ethical issue:

“I know that surgeons don’t think this is an important issue, so they assume that it’s not important to patients. However, this thinking is wrong. Patients want to know that their surgeon is the individual who actually operated on them, and I think they have a right to this information. We are talking about situations where patients are completely vulnerable and, by definition, there is a risk of death or severe bodily injury.”

I learned from an op ed piece in today's Boston Globe that the American College of Surgery has created a committee to develop policy about simultaneous surgery. The committee includes proponents and opponents of the practice.

There's an important lesson about health system ethics in all of this. Just as it takes a village to raise a child, it takes multiple components of civil society to promote an ethical health system. With regard to the practice of simultaneous surgery, the Boston Globe Spotlight Team brought the issue to a wider public. Individuals, like the author of the op ed I cited (Nancy Brinker, founder of the Susan Komen breast cancer charity) pitched in thoughtfully. A professional association - the American College of Surgery - is working on evidence-based guidelines for how the practice should be handled. Another professional organization - the Society for Patient Centered Orthopedics - nailed the fact that meaningful informed consent must be part of the process.

We tend to think about ethics in terms of individual conscience and behavior. But just as we have come to see quality of care as a system responsibility and errors as not simply the result of individual "bad apples," we must understand health system ethics as the responsibility of organizations as well as individuals. To improve the ethics of the health system we depend on ethical health organizations as well as vigilant individuals.

Informed Consent for Simultaneous Surgeries

Two months ago (here) and again today the Boston Globe Spotlight team wrote about the practice of having one surgeon doing two operations at the same time, moving between two operating rooms and leaving fellows or residents "in charge." Dr. Dennis Burke, a prominent orthopedic surgeon at the Massachusetts General Hospital, brought his concerns about simultaneous surgery to the Spotlight team. Dr. Burke has been dismissed from the hospital for showing redacted records from his own patients to the Globe team. 

Physician leaders at the Massachusetts General Hospital and elsewhere insist that there is no evidence that simultaneous surgery has led to worse outcomes for patients. And advocates defend the practice - which is common at leading hospitals, as (a) efficient use of skilled surgical time and (b) a way to reduce waiting time for patients. 

If simultaneous surgery were recognized as having even a small effect on patient safety, for reasons of prudence (malpractice liability and terrible publicity) as well as ethics, hospitals would not allow it. But let's assume that definitive studies showed there was no increased risk. What then?

Think about it personally. If you were going under the knife, would you want to know that your surgeon would be going in and out of the operating room to do surgery on another patient at the same time? I would. 

If there's no difference in outcomes, physicians might say - "why do I need to tell patients - there's no difference in outcomes?" The answer is that we have an ethical duty to give patients information that's important to them. I've done an informal survey among friends as to whether they regard the question of whether their surgeon would be doing two operations at once as something they would want to know about as part of their decision-making process. 100% said it is.

Revealing the possibility of another surgeon taking charge in the small print of an informed consent "contract" does not do the job. Good ethics requires open discussion. This may well be uncomfortable for surgeons, just as candor about how often they have done a procedure when they are early in the learning curve is. But it's what we owe our patients, and to the reputation of our profession as trustworthy, not devious and evasive.

More About Unethical Drug Prices

As if the example of Turing Pharmaceuticals and the 5,000% price increase for Daraprim weren't enough, two days ago the New York Times described another example of blatantly unethical - but entirely legal - drug  pricing.

Horizon Pharma has combined the generic equivalents of Motrin and Pepcid into a single pill, Duexis. Taking one of each would cost no more than $40 per month. For the single pill that combines the two ingredients, Horizon asks for $1,500! To circumvent the stunned look a pharmacist would give to a patient who brings the Duexis prescription into the pharmacy, Horizon encourages physicians to send the gold-plated prescription directly to a mail order pharmacy that will send the medication to the patient and deal directly with insurers.

Several decades ago I saw a patient for whom I wanted to prescribe a low dose (25 milligrams) of the antidepressant Zoloft. At the time the two available dosages - 50 and 100 milligrams - were priced the same. The patient was a thoughtful person and I was interested in the relevant ethical issues, so I asked if he thought it was fair for me to prescribe the 100 milligram pill and ask him to divide it into four pieces. He initially said "no," and I prescribed the 50 milligram pill to be broken in half.

Some minutes later he returned to my office. "I've been thinking," he said. "I survived the Nazis during World War II because other people took risks to protect me. I want to do this little bit for the public good. Why should the people who help pay for my insurance spend more than is necessary for me to get my medication?"

Unfortunately, Horizon does not share my patient's moral vision. Although its actions are legal, if Hippocrates were reincarnated, here's the dialogue that might ensue:

Hippocrates: "Didn't I make 'first, do no harm' clear in my teaching?"
Horizon: "What harm are we doing? Duexis is a good medication. And the patient isn't paying - it's the insurance company!"
Hippocrates: "We didn't have insurance companies in my day. But even an old timer like me can understand that the insurer's money comes from all the working people who pay into the insurance pool. For every patient who uses Duexis instead of the two generic ingredients separately, you are taking $1,460 per month out of the pocket of working people. That's harm! You should be ashamed of yourself!"

When I Googled Horizon a few minutes ago I was happy to see that the revelation of its legal but unethical practice has sent its stock tumbling. The invisible hand is giving the company a well-deserved slap!

How Three Competing Ethics Frameworks Let Drug Prices Run Wild

A few weeks ago I gave a talk about the ethics of high cost pharmaceuticals at a Connecticut Health Council event. After I accepted the invitation I was initially at a loss about what to say. Simply excoriating Turing Pharmaceuticals for raising the price of Daraprim by 5,000% would be too easy. But when I asked myself what allowed Turing's actions to be grossly unethical but completely legal, I saw that three competing ethical frameworks - "good vs good" conflicts - help explain why we've been so impotent in relation to drug prices.

1. Free market theology vs ethics of care. A teaching from Milton Friedman's Capitalism and Freedom has achieved the status of unquestionable religious truth for many: "There is one and only one social responsibility of business - to use its resources and engage in activities designed to increase its profits so long as it...engages in open and free competition, without deception or fraud." But many of those who are deeply involved in health care, including many in the pharmaceutical industry, see their work as a calling, in the spirit of Hippocrates, who articulated the ethics of care 2500 years ago. Both frameworks embody ethically admirable values. But in many sectors of the US health system, with the current pharmaceutical industry as a prime example, the theological commitment to free markets is overly dominant.
2. Life is priceless vs opportunity costs matter. More than 30 years ago, in  his deservedly admired evocation of the ethics of care, Norman Levinsky invited physicians to believe that the sacredness of their calling meant that the opportunity costs of our interventions should not be considered: "physicians are required to do everything  that they believe may benefit each patient without regard to costs or other societal considerations. In caring for an individual patient, the doctor must act solely as that patient's advocate, against the apparent interests of society as a whole, if necessary...When practicing medicine, doctors cannot serve two masters...The doctor's master must be the patient."
   
   These are stirring words, and in my teaching I've found that most physicians embrace them with pride. But looked at closely, it's clear that Levinsky's passionate embrace of the ethics of care led him into the error of ignoring opportunity costs. When physicians indicated solidarity with Levinsky's position I sometimes responded as follows: "Doctor - congratulations on your altruism. If your patient needs a heart transplant and you are the only match, you're prepared to donate your own heart!"
   
   Until recently, the "life is priceless" ethic led us physicians to ignore the impact our interventions imposed on individuals and wider society. Nurses, social workers, and other health professionals have been more attuned to the way the over-costly health system harms population health by undermining income and other social determinants of health. Only now, with drug prices going through the roof, are we physicians beginning to see the limitations in Levinsky's noble and inspiring rhetoric.
3. Government is the problem vs government is [part of] the solution. My generation (I was born in 1939) was conceived in the New Deal era, came into adulthood during Lyndon Johnson's Great Society movement, and have watched the pendulum swing from inflated confidence in government action to the nihilism of the Tea Party and the Freedom Caucus.

The crucial point is that the three conflicting frameworks represent "good vs good" conflicts, not "good vs evil." As such they call for a political culture that is prepared to follow Winston Churchill's advice:

Nationally, we lack the courage to listen. This has led to a failure to balance the three competing ethical frameworks. Runaway pharmaceutical prices reflect our theological commitment to free markets, the reluctance of the medical community to consider the opportunity costs imposed by health care expenditures, and the national distrust of government action. Mature organizations speak and listen. At present, our political culture cannot do both. We see one result of the national skill deficit in our inability to rein in pharmaceutical pricing.

From Clinical Care to System Improvement

A reward I derive from working half time is the flexibility to take on labors of love, one of which is being a member of the ethics committee at the Commonwealth Care Alliance.

Commonwealth Care Alliance (CCA) is a not-for-profit, consumer governed care system for Medicare and Medicaid beneficiaries with complex medical problems. It embodies the values that have guided my whole career, so when I was invited to join the CCA ethics committee I jumped at the chance.

Here's a story (slightly edited) from the every-other-week email circulated by Bob Master, CEO of the organization:

RA is a 61-year-old man with poorly controlled diabetes and severely compromised circulation in his legs who is living alone with a very limited ability to care for his complex medical issues. RA has also been battling a long-standing heroin addiction without success until he was prescribed Suboxone, which for many like RA, is a newer, more effective and safer treatment approach than Methadone. With Suboxone treatment, RA has experienced a full recovery from his addiction with dramatic improvement in his ability to live independently. 

 During his recovery, RA fell and sustained an ankle fracture that required surgery. Because of his diabetes, very compromised leg circulation, and requirements to avoid “weight bearing” on his surgically repaired foot, post hospital skilled nursing facility care was deemed essential. 

 However, existing regulations today prohibit individuals requiring Suboxone to be admitted to Skilled Nursing Facilities. RA’s primary care physician, and CCA Medical Director, Stefan Topolski, explains it this way: “To find that something so simple, so easy and so safe to prescribe as Suboxone – somehow becomes an impediment to needed skilled nursing facility care even when physicians providing care in that facility are certified to prescribe it, makes no sense.”

 Nurse practitioner Cary Hardwick explained that RA had been very well maintained on Suboxone. “It dramatically changed his life and his ability to live independently.” RA agreed, saying “It kept me from doing a lot of bad choices.” 

So without other options but suboptimal care in a compromised home situation, a home care plan with a high likelihood of failure was instituted. Sadly, despite best efforts, significant infection occurred at the surgical site. Ultimately, RA needed to have an amputation below his knee.

[A short video featuring RA, Cathy Hardwick, and Stefan Topolski, can be seen here.]

This is a powerful and painful clinical story. The reason I'm publishing it in a blog on organizational ethics is what Bob Master said next:

RA’s story did not need to happen, and likely would not have happened if policies were in place that promoted rather than restricted the use of effective ongoing addiction medications such as Suboxone in skilled nursing facilities. Clearly, this policy and probably many others need to change. It should come as no surprise that we are the first entity to uncover this problem and the first entity engaged in promoting such needed changes.

Accordingly, I’m proud to report that our skilled nursing facility team is now actively working with the Massachusetts Department of Public Health to change this counterproductive regulation so that individuals like RA in need of SNF care can be admitted to SNFs while being prescribed these important medications. It is admittedly a small step but I am proud to say a very important one. 

It's all too easy for us clinicians to throw up our hands in despair when we encounter a problem like the one that arose in RA's care. And it's easy for the wider public to fall into cynicism about "dumb bureaucracy." The story from CCA illustrates the kind of quality improvement from the ground up that our health system needs. I know the Massachusetts Department of Public Health. It's not a nest of "uncaring bean-counting bureaucrats." But we're all capable of making mistakes. The key skill our system needs is the kind of activism the story illustrates - moving from impediments to giving the right kind of clinical care to improvement of the system.

Hats off to the Commonwealth Care Alliance, and to RA, who wanted his experience to be used to help others!

[For a 2011 post about the Commonwealth Care Alliance, see here.]

Nuka & Organizational Ethics

Yesterday morning an email with the subject heading: "Strong Patient-Provider Relationships Drive Healthier Outcomes" appeared in my in-basket.  I might have thought - "ho hum, been there/know that" and deleted the message, except that it came from the Harvard Business Review. I was curious. What made business folks interested in a topic that every seasoned primary care clinician has known about for years?

It turned out that the authors have been doing  what business schools do so well - studying exemplary primary care systems as a basis for developing teaching cases. What struck me in the Business School findings was that the outstanding organizations they were reporting on had not simply preached about the importance of strong clinician-patient relationships: they had engineered the organizations themselves to encourage and facilitate excellent relationships.

In our teaching of medical students and other health professionals we emphasize the values and behavior patterns of individuals. This is an important starting point for health care ethics. But as the discussion of the Southcentral Foundation in Alaska demonstrated, a properly designed and managed organization can point clinicians in the right direction and make it easier for us to get there.

In the 1990s, Southcentral Foundation, well-described in an excellent article by Katherine Gottlieb, president and CEO, looked into its heart and reconceptualized its mission as being about relationships:

Alaska Native leadership recognized that the core product is something bigger than just tests, diagnoses, pills and procedures. It is about human beings and relationships – messy, human, longitudinal, personal, trusting, informing, respecting and accountable relationships...If a practice or organization really believes that the core product is relationship – that is, partnering to make a difference over time – a fundamental change is required. Where money and time are spent, what work staff members do, who is hired and how staff are trained – every action is intentionally designed to optimize relationships.

Southcentral calls its approach the "Nuka System of Care." "Nuka" is a native Alaskan word meaning "big living things." Gottlieb describes four key ideas driving the "big living" Nuka system:

1. "The customer drives everything." Southcentral thinks of those it serves as "customer/owners." The SCF approach goes well-beyond the current buzzword - "patient centered care" - which often connotes an empathic attitude but not redesign of services to meet patient preferences.
2. "All customers deserve to have a health care team they know and trust." It's easy to endorse this principle. What distinguishes SCF is the actions they take to facilitate trusting relationships, not simply their words. Words are cheap. Making the sentiment a reality takes sustained work over time.
3. "Customers should face no barriers when seeking care." 75-80% of the appointments are for same-day care. That says it all!
4. "Staff members and supporting infrastructure are vital to success." Again, what counts is well planned, consistent devotion to this aim at all levels of the organization.

The crucial insight arising from the Harvard Business School project, which is being conducted in collaboration with Center for Primary Care at Harvard Medical School, is that organizations are moral actors, just as individuals are. Strong clinical relationships promote trust and health. In a health system in which organizations play an ever increasing role, we need to focus on and strengthen the moral behavior or organizations as well as individuals.

[For readers who want to delve further into the concept of organizations as moral actors, see this article by my friend David Ozar, an early leader in thinking about the ethics of organizations.]

Public Learning about ACOs

"Culture beats strategy every time" is a truism in management consultation. The Accountable Care Organization concept is excellent strategy, but it won't get anywhere if our health system culture doesn't support it.

This morning I was happy to see a front page article in the New York Times about how Advocate Health Care is developing its ACO. The article is clear and informative. But the amateur medical anthropologist in me was struck by what the language reveals about the cultural context within which ACOs will thrive or crash and burn. In what follows, snippets from the article are in italics, followed by my editorial comments. I've highlighted key phrases - all of the emphases are mine:

On a stormy evening this spring, nurses at Dr. Gary Stuck’s family practice were on the phone with patients with heart ailments, asking them not to shovel snow. The idea was to keep them out of the hospital, and that effort — combined with dozens more like it — is starting to make a difference: across the city, doctors are providing less, but not worse, health care.

In recent years I've been careful to shovel snow slowly and not to overload the shovel. If I was one of Dr. Stuck's patients I would have appreciated a call from the nurse. But note the assumption that less care is likely to be worse. As a physician who practiced for 43 years my default view is that less is better/more is worse. Many of my colleagues think the same way. ACOs won't succeed unless we can nudge the wider public into understanding that "more" does not equal "better" and "less" is often an improvement!

For most health care providers, that would be cause for alarm. But not for Advocate Health Care, based in Oak Brook, Ill., a pioneer in an approach known as “accountable care” that offers financial incentives for doctors and hospitals to cut costs rather than funnel patients through an ever-greater volume of costly medical services. Under the agreement, hospital admissions are down 6 percent. Days spent in the hospital are down nearly 9 percent. The average length of a stay has declined, and many other measures show doctors providing less care, too.

Insofar as the kind of integrated care ACOs are designed to promote is the right way to deliver care, the changed payment structure is removing a barrier to doing the right thing, not "incentivizing" us like rats in a maze. I don't think I'm alone in finding all the talk about "incentivizing physicians" to collaborate with their patients and colleagues offputting. And if I were a naive patient I'd be suspicious of care that my doctor had to be "incentivized" to provide!

“It’s hard to imagine that you could start from scratch and do this and be successful in three years," said Dr. Lee Sacks, Advocate’s chief medical officer, noting that other systems may find it far harder to flip the traditional fee-for-services system on its head. “We had a running head-start going back to 1995.”

The organizations that joined in 1995 to create Advocate have a 100 year history of faith-based health care. As a non-Christian I found the Advocate mission inspiring. I would be proud to practice with colleagues who shared the values Advocate promulgates. I wish the article had taken the following great quote from Dr. Sacks that I found on the Advocate website:

"There is just a special feeling throughout Advocate Health Care. We regularly recognize those who exemplify our values of compassion, equality, excellence, partnership and stewardship, even though many of them would say that they were just doing their job.”

A piece of cheese at the end of a maze isn't what "incentivizes" health professionals - it's the privilege of being part of a caring profession whose values go back for millennia! The admirable clinicians Dr. Sacks is talking about would be stunned to be told that their comportment reflected economic incentives, not personal mission!

In some ways, accountable care resembles earlier efforts to control medical spending, including the health maintenance organizations that proliferated in the 1980s but fell out of favor, in part because they severely limited patients’ choices. But accountable care differs by giving doctors and hospitals a direct financial stake in saving money and a reason to invest in various programs of preventive care rather than relying exclusively on the fees they would normally earn from providing services.

This snippet tip toes towards getting the culture issue right, but it still misses the crucial point. Capitated payments facilitate investment in programs (and not just for prevention) that are not paid for in our cockeyed fee-for-service/widget-rewarding payment system. But that's not what gives doctors a "reason" to invest. The reason is that it's the right thing to do in light of a mission that even many athiest clinicians regard as "sacred."

So far, Advocate has achieved a small but significant savings of about 2 percent below projected costs, Blue Cross Blue Shield said, but it is not clear whether it can continue to make progress. Already, some Advocate hospital chiefs have expressed fears over losing revenue and warned about the threat to their financial performance. Doctors fret that their incomes may suffer. “We’re doing it because it’s the right thing to do for patients,” said Dr. Stuck, the Advocate family physician. “We’re not making more money.”

Dr. Stuck's point about doing the right thing speaks for itself!

“You’re trying to overlay a payment design onto a benefit model that allows a patient to go anywhere he wants,” said Steve Hamman of Blue Cross Blue Shield, noting that patients can undermine the advantages of the new approach if they ignore the advice or insist on unnecessary tests and procedures. “We can talk all we want about provider accountability and how important that is. But there is a measure of patient accountability that is critical as well.”

For readers who aren't familiar with the ins and outs of the ACO concept, this paragraph is referring to the fact that Medicare beneficiaries who are receiving their care from an ACO aren't "locked in" to the ACO network. If Dr. Stuck's patients want to go to the Mayo Clinic they can do so. This is likely to create clinical, economic and ethical challenges for ACOs. What if the Mayo Clinic does knee replacements better than the ACO? Do we have to refer patients "out"? What are the acceptable ways for ACOs to try to keep patients "in network"? And, most important, how do we engage patients and the public in seeing stewardship of shared resources as a societal imperative they share responsibility for?

We Yanks believe in magic bullets. That's why we have so many drugs in our medicine cabinets and drones in the sky. ACOs, alas, will not magically solve our health "system's" problems of quality and cost. The ACO is a good concept, but it won't thrive without a supportive culture. The otherwise excellent article in the New York Times shows how far we have to go to develop the culture we need!

(See here, here, and here for posts that discuss related aspects of the ACO concept.)

Health Care in Singapore

I've had the good fortune to be invited by the Singapore Centre for Biomedical Ethics to do a week of teaching about health system ethics. Right now I'm at Heathrow airport in London, in between the Boston to|London and  London to Singapore legs of my trip.

Although there's been a lot of interest in Singapore among health policy cognoscenti, I'd been in the dark about the Singapore system until I started preparing for my visit. My impression thus far is that the People's Action Party, which has governed since independence in 1965, sees health care as (a) a crucial contributor to well-being but (b) largely an individual responsibility to provide for oneself and one's family, and (c) not a right the state is responsible for fulfilling.

When Singapore became independent in 1965 it was impoverished, with a life expectancy of not much more than 60. The government's initial emphasis was on the determinants of population health - housing, clean water, jobs, and education. On the basis of their vigorous action, health and mortality improved markedly. In 1984 they introduced a mandatory medical savings account program - "Medisave" - in which all working people, including the self employed, contributed 6-8% of income to their "Central Provident Fund" account, to be used for their own medical care and for family members (spouse, children, parents and grandparents). In the 1990s the government introduced an insurance scheme ("Medishield") and a means tested fund for low income folks ("Medifund"). But there's still a very strong emphasis on individual responsibility and paying a fair share of the cost, even for the poor. (For information about the Central Provident Fund and the system of "3 Ms", see here .)

I've been told the Singaporean government sees "insurance" in a negative light. "Insurance" connotes dependency on the state and abdication of personal responsibility. In the U.S. the frequent comment that our health system is so out of control because the population lacks "skin in the game" comes from the same moral and economic perspective. As a dyed in the wool liberal I'm a staunch believer in a universal system - either something like Medicare for all or guaranteed access to strictly regulated health plans. The framework of values in Singapore is jarring for me, but their outcomes appear to be terrific, in terms of health indices and a much less costly system than we have in the U.S.

Since I recurrently criticize conservatives for what I describe as their "theological" commitment to market solutions, to be consistent I have to challenge my own liberal theology on this visit to Singapore. Stay tuned

Pay for Performance vs Intrinsic Motivation

Among the many stories about health care heroes during Hurricane Sandy, this was my favorite:

Allison Chisholm, 46, who works for the Visiting Nurse Service, lives with a frail mother in Park Slope, Brooklyn. When the lights started flickering during the storm on Monday, she had images of her mother falling in the dark. But she also had patients who needed her, including one receiving hospice care in a 12th floor apartment in Chinatown, and one needing an intravenous round of antibiotics in the West Village.

“It was treacherous driving during the hurricane,” said Ms. Chisholm, fitting an intravenous line into the arm of Jill Gerson, 71, who teaches social work at Lehman College in the Bronx. “But it’s just something you have to do as a nurse. That continuity of care helps the healing. I don’t see this as being heroic. I have a conscience. I need to get to sleep at night.”

Ms. Chisholm was responding to intrinsic motivation - her values as a nurse, embodying the tradition associated with Florence Nightingale and Mother Theresa. She wasn't being "incentivized" (one of my least favorite words) by pay-for-performance, unless we regard the threat from her conscience that - like Lady Macbeth - she would "sleep no more" if she failed to put her values into action as a performance management system, as an "incentivizing" force!

Pay-for-performance has considerable face validity. Extrinsic motivation clearly works in vast swathes of the economy. But as my friend Dr. Steffie Woolhandler's recent post on the Health Affairs blog shows, it's  not at all clear that pay-for-performance is effective in domains that have historically rested on intrinsic motivators such as idealism, altruism, and care. Pay-for-performance can increase the behaviors that are being measured, but evidence that these systems enhance patient outcomes is weak or absent. And there is substantial evidence from the behavioral economics literature that monetary rewards can actually decrease motivation for tasks that are intrinsically rewarding.

My own reaction when I hear of programs to "incentivize physicians to do [XYZ desirable clinical behavior]" is decidedly negative. When I began my own fee-for-service practice in the 1970s I took pleasure in including Medicaid beneficiaries, but after a time the burdensome paperwork and inefficient reimbursement process, combined with microscopic fees, acted as a disincentive for doing what I wanted to do, and I limited the number of Medicaid beneficiaries I took on. I didn't need to be "incentivized" but I would have responded well to a reduction of disincentives.

Rats in a Skinner box are "incentivized" by food pellets. But as the interview with Ms. Chisholm reflects, the kinds of caretaking we want to encourage in medicine flows from values, not P4P pellets. Program managers will do better by recognizing, respecting, and supporting intrinsic motivation. This is best done by removing impediments, not by the condescending view of doctors and nurses as reluctant laborers.

The Ethics of Choosing Wisely and Practicing Efficiently

This month the American Board of Internal Medicine Foundation (ABIM) joined with nine medical specialty societies, each of which released a list of five tests, procedures or treatments whose use and clinical value were not supported by evidence, as determined by experts from the specialty.

This is a major step for the US health system. We've been phobic about engaging seriously with waste. In the 1990s we asked insurers to do the job, but physicians and patients pushed back against "managed care," and insurers backed off. Now we physicians ourselves are stepping forward. It's about time!

Among the 45 recommendations, the ones that are "absolute" should be relatively easy to discuss with patients, as in this example from cardiology:

Don’t obtain screening exercise electrocardiogram testing in individuals who are asymptomatic and at low risk for coronary heart disease. In asymptomatic individuals at low risk for coronary heart disease (10-year risk <10%) screening for coronary heart disease with exercise electrocardiography does not improve patient outcomes.

There's no waffling here - this form of screening "does not improve patient outcomes." If I were a cardiologist I would say that asking Medicare, Medicaid, or a private insurer to pay for the screening would be unethical. If it is known not to improve outcomes there's no justification for using shared health care funds to pay for it. And I'd feel fully comfortable looking my patient in the eye and explaining why I would not order the test.

The same is true for this "absolute" recommendation:

Don’t obtain imaging studies in patients with non-specific low back pain.
In patients with back pain that cannot be attributed to a specific disease or spinal abnormality following a history and physical examination (e.g., non-specific low back pain), imaging with plain radiography, computed tomography (CT) scan, or magnetic resonance imaging (MRI) does not improve patient outcomes.

But some of the recommendations are "relative," not "absolute," as in these two examples:

Don’t obtain preoperative chest radiography in the absence of a clinical suspicion for intrathoracic pathology.
In the absence of cardiopulmonary symptoms, preoperative chest radiography rarely provides any meaningful changes in management or improved patient outcomes.

Don’t use cancer-directed therapy for solid tumor patients with the following characteristics: (a) low performance status (3 or 4), no benefit from prior evidence-based interventions, not (b) eligible for a clinical trial, and no strong evidence supporting the clinical value of further anticancer treatment.
Studies show that cancer directed treatments are likely to be ineffective for solid tumor patients who meet the above stated criteria...

Suppose a patient with a solid tumor that meets the specified criteria protested - "I understand that further chemotherapy is unlikely to be effective, but I want to try anything with the slightest chance of helping me. Your medical society is recommending rationing! That's not fair!"

The oncologist won't have an easy time responding. The patient is right - the medical society has made a rationing recommendation. In my view, this is a long overdo step forward out of the lala land of make believe infinite resources. But in our political culture, the word "rationing" is avoided as assiduously as the "f" word. Our reflex is to deny that rationing is occurring, not to discuss the rationale for why and how it is being done.

And with regard to the recommendation against a routine chest X-ray, it's only a matter of time until the evening news features a patient whose X-ray picked up an undiagnosed cancer, leading to cancellation of the scheduled surgery and removal of the cancer. The patient will tell us "the X-ray saved my life - are we going to let a rationing decision kill people just to save money?"

I hope the ABIM and the specialty societies are brave enough not to run for cover when the inevitable backlash occurs. They've taken a courageous step on behalf of the health of patients who could be harmed by interventions that wise clinical practice should avoid. And they've pushed us towards open engagement with the question of when interventions that "rarely" produce any benefit should be paid for our of shared insurance funds. We should thank the ABIM and the specialty societies for their contribution to healthier patients and a healthier society!

(Information about the ABIM's "Choosing Wisely" program can be found here.)

Medical Ethics and Blaming the Victim

A article on female genital pain got me thinking about one of my pet peeves in medicine – blaming the victim.

The condition – vulvodynia - was often blamed on the woman, as in saying “it’s a fear of sex,” “it’s in your head,” or “it’s classical hysteria.” Now it turns out that identifiable, but subtle, anatomical factors appear to cause it. Treatment has improved. Blame is diminishing.

I first heard clinical teachers say things like “the patient failed chemotherapy so we decided to try…” when I was in medical school. The people saying this were typically devoted caretakers. The implication that the treatment didn’t work because the patient “failed” was rooted in health jargon, not their hearts.

But the “patient failed” phrase isn’t just a piece of sloppy grammar. It shows something about the culture of health care, at least in the U.S.

The good thing the phrase reflects is just how responsible caretakers feel for patients. If the treatment doesn’t work we tend to feel guilty, even when we’ve done the best that can be done.

The bad thing the phrase reflects is our collective cowardice. Instead of acknowledging the sad fact that medicine, while powerful, is limited, we blame the patient. Medicine didn’t fail. The patient did.

Looking into what has been written about blaming the victim I came upon this moving 2004 exchange in The Oncologist:

TO THE EDITOR:

As a lung cancer patient and advocate, I have been enormously heartened the past few months with the recent discovery of the epidermal growth factor receptor (EGFR) mutation and its immediate and long-term implications for improved treatment and extended survival for people with lung and other cancers.

In reading about the promise and potential of this new finding in Dr. Bruce Chabner’s editorial, "The Miracle of Iressa" [1], I was jolted from my excitement by one particular phrase. Dr. Chabner stated that "...patients will continue to receive Iressa when they fail chemotherapy." When they fail chemotherapy? Have the patients really "failed" when chemotherapy drugs do not work? Of course they haven’t. So why use a phrase that implies blame?

Dr. Chabner, whom I know to be an excellent and sensitive oncologist, is far from alone in expressing the failure of cancer treatment in a less than patient-friendly way. This unfortunate convention is used in the medical literature, at professional conferences, and not surprisingly, in the clinic. It is common for oncologists to tell patients that they "failed drug X." By telling patients they failed to respond to treatment, doctors may increase the guilt that many patients already struggle with as a result of their cancer diagnoses. For others, like me, it becomes an annoying refrain. At minimum, it puts emotional distance between doctor and patient and undermines the doctor-patient relationship. Just imagine under the same circumstances if the patient said to the doctor, "You failed to give me the right drug to treat my cancer." The question isn’t who failed, but what failed.

I ask Dr. Chabner and The Oncologist readers to be mindful of the language used when discussing the failure of therapies in cancer patients. Something as simple as, "Drug X didn’t work for you, maybe this one will," is one example. There are numerous ways to express the failure of cancer treatment without failing the patient, too.Sincerely,

Karen Parles, MLS
Editor, www.LungCancerOnline.org
Executive Director, Lung Cancer Online Foundation

FROM THE EDITOR:

Our reader, Karen Parles, points out an important, and unfortunate, mistaken use of the word "failure" in my recent editorial, describing a patient’s lack of response to Iressa therapy [1]. The failure of treatment is not the patient’s fault in any regard. The fault lies with the current state of science, and our understanding of the disease. The convenient phrase "failure," so often used in our society to describe an unhappy outcome beyond the control of the individual, has no place in the context of unsuccessful treatment of a disease such as cancer. I apologize for myself and my colleagues, who so often confuse outcome with intent, and I thank Karen Parles for raising our consciousness to the all-important use and impact of our words.

I assure her that I have expunged "that phrase" from my vernacular ... and I urge my colleagues to do likewise.

Bruce Chabner, M.D.
Editor-in-Chief, The Oncologist
Clinical Director, Massachusetts General Hospital Cancer Center.

Hats off to Dr. Chabner! I hope our colleagues follow the example he's set.