Tuesday, December 10, 2013
Accommodations for people with disabilities in professions remains controversial. In medicine as in law, courts defer to the judgments of professional organizations regarding appropriate qualifications. An illustration is a recent district court ruling in Pennsylvania that it is not a reasonable accommodation to alter the multiple choice format for the examination for Board certification in pediatrics. Rawdin v. American Bd. of Pediatrics, 2013 WL 5948074 (E.D.Pa). This decision is troubling both for its understanding of disability and for its deference to the board certification process.
According to the district court, Rawdin was "by all accounts, an excellent pediatrician." Yet Rawdin had a cognitive disability resulting from earlier surgeries for a brain tumor--a disability that affected his ability to process remembered information out of context in a manner that would enable him to succeed on tests in the multiple choice format. Despite several tries, Rawdin could not pass the board certification exam given by the American Board of Pediatrics (ABP). Because of his failure to obtain Board certification, Rawdin was dismissed from his positions in the Neonatology Department of the Children's Hospital of Philadelphia (CHOP), where he had served for 5 years and become the Assistant Director of CHOP's nursery, held a faculty post, and was part of the Academic Clinician Track at the University of Pennsylvania School of Medicine. Rawdin brought suit against the ABP under Title III of the ADA seeking alternative testing as an accommodation. The district court held that Rawdin was not a person with a disability under the ADA (as amended by the ADAAA) and that, even if he qualified for statutory protection, the accommodation he sought was not reasonable because it would be a fundamental alteration of the ABP testing procedure.
The court's ruling against Rawdin rested primarily on the determination that his disability did not bring him within the statutory protection of the ADA. As the case arose after the effective date of the ADAAA, the court applied the amendments' more expansive standard for determining disability. The court agreed that Rawdin's memory processing difficulties are a mental impairment and that test taking is a major life activity. However, the court still concluded that Rawdin was insufficiently affected to meet the statutory standard, reasoning that his cognitive processing abilities were at least average for the general population and so his limitation was not substantial. This comparison--between Rawdin's abilities and the general population, not between Rawdin's abilities had he not had the brain tumor and Rawdin's abilities as affected by the tumor and its treatment--was not changed by the EEOC in light of the ADAAA. Interpretations such as this illustrate the irony of the ADA, even as amended by the ADAAA: there are many who could work successfully or meaningfully access accommodations but who remain unprotected by the ADA even in its amended form.
Although the Rawdin court's determination that Rawdin did not warrant statutory protection was sufficient for its decision, the court also reached out to state that Rawdin's request to that the Board certification exam in essay form was not a reasonable accommodation. In thus concluding, the court judged that the ABP was an academic institution and thus deferred to the ABP's claim that a multiple choice examination was the best way to assess competence in the field. The court also concluded that developing a different exam would impose an undue hardship on the ABP.
The Rawdin court also chose to reach the issue of whether altering the format of the exam was a reasonable accommodation, even though it was unnecessary to its resolution of the case. Deferential to the ABP as to an academic institution, the court concluded that its determination that changes in the exam format would lower standards should be respected. The court also judged that the requested accommodation would be a fundamental alteration of the Board certification process.
The decision's deference to professional determinations is not surprising. However, if the court's description of Rawdin's excellence as a neonatologist is accurate, it illustrates the problematic costs of the ABP's approach.
Thursday, May 30, 2013
Ever since HIPAA was implemented in 2002, it has been used by health care providers to make life more difficult for patients by preventing their family members from being with them in care areas and by refusing to share information with those the patient wants to be kept informed. This has caught the interest of the U.S. House Energy and Commerce Sub-Committee has been holding hearings into various consumer issues regarding HIPAA. I think this review is long overdue--and that HHS is well aware of how providers are misusing HIPAA. The problems are so prevalent that the HHS website actually has a myth-buster section.
So what can a family do? A good step is to be skeptical when told that something is being done "because of the law." As I have explained again and again to health care providers and lawyers, “If you think something that a) the patient or his family wants or b) is in the best interests of his care is prohibited by HIPAA, you don’t understand HIPAA.” Ask for clarification from the hospital's lawyer--will you get that person on first call? Maybe not, but be persistent.
Inform yourself on the HHS website. There is also a very useful FAQ section that addresses questions like, “is it illegal for a family member to pick up a prescription for a patient” (no) and It starts with an over-all statement of principle: “The Privacy Rule provides federal protections for personal health information held by covered entities, and gives patients an array of rights with respect to that information. At the same time, the Privacy Rule is balanced so that it permits the disclosure of personal health information needed for patient care and other important purposes.”
Moreover, there is no provision in HIPAA that requires or allows a health provider to step in as “guardian of privacy” for a patient who is not conscious or competent. When there is an identifiable surrogate decision maker, that person can make any decision about disclosure that the patient could have made himself. And, no, there need not be any written document expressly allowing sharing of information with the surrogate. Moreover, if a person has legal authority to make medical decisions, then he is entitled to review the medical records so that the decision can be an informed one.
At this point, more than ten years later, it’s reasonable to wonder if some of these “misunderstandings” are fostered by the fact that they make things easier for the providers in that it limits time consuming questions—like, “why isn’t my mother receiving pain medication?” or “what are our options for Mom’s care?” Certainly the posts in this nursing blog suggests that’s the case. Here’s my favorite from Ortho-RN, “We usually don't allow family in the recovery room... I don't feel it's a place where family belongs.. No privacy, totally in HIPPA violations. Families like to be nosey and watch other things, and things do not always go smoothley...” (sic) Here’s another insight into how providers see their obligations
A brief foray into common sense should demonstrate the absurdity of these restrictive interpretations. The premise should be that outside a few narrow health & safety exceptions, no one other than the patient is in a better position to decide who can and cannot have information about the medical care being provided. And keeping family members away because of the risk they will see "other patients" is an absurdity. None of us have the right to receive health care in complete seclusion. Maybe high profile patients can pay for private wings—but all of us are stuck with the reality that in going to receive health care we may well be seen by other people, including those who know us. Finally, health care providers themselves are not entitled to protection from the observations and questions of family and friends about the care of their loved ones. Could there be times during an emergency when the team can't stop and talk. Sure. But if these would be reasonable requests for information from the patient, then they are reasonable from the people the patient trusts most to protect his interests.
Saturday, May 25, 2013
It's no secret that the night staff of a hospital are both over-worked and over-tired. Nor is it any secret that many medical errors occur at night. But until we look at the totality of the human factors making up medical error, we are unlikely to make significant headway in addressing it. A review of the literature suggests that the reason isn't a lack of understanding about the factors which cause human errors, it's concern about the cost of addressing them.
The authors of a recent study in the Journal of the American Medical Association titled, Relationship Between Occurrence of Surgical Complications and Hospital Finances conclude that not only aren’t hospitals doing all they can to reduce medical errors, they actually have no financial incentives to do so.
I'd suggest that financial incentives are behind ineffective efforts to address the issues of staff over-work and the inherent dangers of intermittent shift work.
It's no surprise that another widely reported recent study has found that reductions in the hours medical residents work has not resulted in increased patient safety. The study authors conclude that this is because although residents worked less hours, they did not have a reduced work load. So, like Lucille Ball in the chocolate factory, the trying to cram more work in the same amount of time increased resident error.
The findings of that study need to be seen in combination with the vast amount of scientific research on the increase in errors caused during night shifts. A recent study of nurses working night shifts showed that “on average, the error rate increase 6% after the second night shift in a row, 17% after the third successive night shift and an astounding 35% higher on the fourth night shift.” See also this and this article by the Joint Commission. Although no one disputes the reality that human beings perform best in the day time, every hospital must be fully staffed 24 hours a day. The information is both anecdotal and research based. But no one seems to be listening.
An article in Nursing World does an excellent job of using available research to describe the scope of the problem, but implies that it can be effectively addressed by nurses proactively paying more attention to their sleep patterns. It advises nurses working the night shift to “take control of sleep.” In fact the NSF “recommends that nurses wear wrap around sunglasses when driving home so the body is less aware that it is daylight.” This advice ignores the scientific reality that humans are not as effective or alert at night as they are in the day time. Nor does it consider the human reality that medical shift workers do not have the luxury of using their days to sleep. Like everyone else living in a diurnal world, they must cope with the tasks of family and daily living.
Techniques like wearing dark glasses may work in making a shift to a new rhythm--like travelling to another time zone. But given the unlikeliness of medical staff to convert to a permanent change in their circadian rhthyms, as if they were working in a submarine (and that doesn’t work very well either) the answer is to address the reality that humans are less effective at recognizing problems and completing complex tasks at night. But that’s not where the problem solving is going.
May 25, 2013 in Cost, Effectiveness, Health Care, Health Care Costs, Health Care Reform, Health Economics, Health Law, Hospital Finances, Hospitals, Insurance, Medical Malpractice, Nurses, Patient Safety, Payment, Physicians, Policy, Public Health, Quality, Quality Improvement, Reform, Research, Science and Health, Substance Abuse | Permalink | Comments (0) | TrackBack (0)
Friday, May 17, 2013
Two widely reported studies this week about bed rest for women at risk of preterm delivery and reduction of salt consumption in order to promote heart health highlight two things we don’t think about enough—that a lot of standard medical practices are without any foundation in science and a lot of legal ones probably are too. However, medicine has more and more taken the public health approach of examining the practices of individual doctors to see how effective they actually are in the general population. For example, it is old news that prescribing bed rest to pregnant women at risk of preterm delivery is not effective. But what this Obstetrics & Gynecology study found that “activity restriction”, such as quitting work, is still prescribed to one at three women at risk for preterm delivery. The accompanying “Bed Rest in Pregnancy: Time to Put the Issue to Rest” makes an ethical argument that continuing to prescribe bed rest in the absence of evidence of its effectiveness violates the principles of autonomy and beneficence.
The Institute of Medicine just issued this report Sodium Intake in Populations: Assessment of Evidence “found no consistent evidence to support an association between sodium intake and either a beneficial or adverse effect on most direct health outcomes other than some CVD outcomes (including stroke and CVD mortality) and all-cause mortality.”
We have similar research in law- a lot of it coming from the Empirical Legal Studies movement, including work done at the Center for Empirical Legal Research at Washington University Berkeley Emperical Legal Research , the Centre for Emprical Legal Studies at UCL (formerly known as University College London) among many others, but it is not as well funded or coming from as well established sources as the studies which attempt to find an evidence basis for medical practices. The salt reduction report was commissioned by the Institute of Medicine In contrast, the ACLU supports its empirical argument that the death penalty does not deter crime on an opinion survey of police chiefs. Translating information from research scientists to practicing physicians is still a slow process,—but no one questions the underlying principle that medical practice should be based on scientific evidence.
Part of the issue is funding. Medicine as a whole is in a constant quest to contain costs and stopping ineffective practices is an important component of that effort. But beyond a small number of progressive funders like the Robert Wood Johnson Foundation, there isn’t a lot of demonstrable interest, the kind supported by funding studies, in law making bodies in finding out what legal practices work and what do not.
This isn’t a new observation. Bryant Garth outlined the problem in 1997 when he explained the importance of more social science research into the foundational principles of practices civil procedure. But the steady flow of studies questioning conventional wisdom coming from the medical field has, as yet, no real counterpart in the world of law making.
Of course there will always be the problem of knowing the unknowable. But it would be interesting for law makers to consider taking a lesson from public health in challenging assumptions about the human body and mind or even more generally the physical world that underlie both common law and statutes.
May 17, 2013 in Bioethics, Comparative Effectiveness, Cost, Effectiveness, Health Care Costs, Health Law, Innovation, Policy, Public Health, Quality Improvement, Reform, Research | Permalink | Comments (0) | TrackBack (0)
Saturday, May 11, 2013
Remembering the Bad Old Days of HIV/AIDS Exceptionalism--and How News from Kansas, an HBO Documentary, and Dancing with the Stars Can Teach Students To See it When it Happens Again
The controversy in Kansas over Sub HB 2183, which was passed into law on April 17th, 2013, puts me in mind of how difficult it is to explain the period of time when "aids specific" laws emerged. My purpose in highlighting this situation is not to get deeply involved in Kansas law or politics. It is pull together some material that may be helpful for teaching public health law to students unaware of the lessons we have learned from the laws proposed, and passed, specifically in response to the emergence of HIV/AIDS during the 1980’s. Without an understanding of the fear and panic that accompanied a disease for which there was no test, no treatment, no vaccine and which quickly killed young, healthy people within months of starting symptoms, it is easy to minimize the risk of such a thing happening today.
What Happened in Kansas
As I understand it, Sub HB 2183 was presented as a statute similar to those in almost every state intended to protect first responders and others who face occupational exposure to infectious
diseases and pathogens. It gives the State’s Department of Health the authority to develop a mechanism for mandatory testing or even isolation of the person who is the possible source of infection
if he is unable to give consent or if no surrogate decision maker can be found. Time is of the essence in these situations and the goal is to provide prophylactic treatment as soon as possible—not to stigmatize the source of infection.
One of the effects of Sub HB 2183 was to eliminate a bill passed in 1986 which specifically prohibited the State from quarantining individuals based on a diagnosis of HIV/AIDS. This led to concerns that people living with HIV/AIDS in Kansas would no longer be protected. Ann Gotlib explains these concerns, and their historical context, clearly in IJFAB-the International Journal of Feminist Approaches to Bioethics.
In an open letter to concerned citizens, the Secretary of Kansas’ Department of Health & Environment explained that “This bill was never about isolation or quarantine related to persons with HIV infection.” Instead, the bill “provides the authority for the secretary…to adopt administrative regulations for prevention and control of HIV in addition to the other specified infectious diseases under current law.” He continues to explain that the Bill reflects an attempt to modernize an old statute from that era, KS 65001, that specifically prohibits the state from quarantining or isolating individuals diagnosed with HIV/AIDS.
Without getting in to Kansas politics and law any deeper, KS 65001 is indeed is a good example of an “AIDS specific” law of that era in that it prohibits the State from quarantining individuals based on a diagnosis of HIV/AIDS. Indeed, according to the Kansas Equality Coalition, the Bill passed based on a compromise that involved creating “a list of diseases ‘not’ subject to quarantine, and to include HIV/AIDS in that list.”
What Kansas Can Teach
Public Health Students Today
Whatever the motivation for the legislation or its effect on
the citizens of Kansas, the controversy deserves attention and study just as would thediscovery of a “living fossil.” It gives us direct access to studying the past.
For anyone else looking for ways to bring that time alive, here are a few words about my experience