Category Archives: Patients

Medical child abuse: Making sense of the Boston Globe stories on Children’s Hospital

The Boston Globe caused quite a stir with its two-part story on Justina Pelletier, a 14 year-old girl taken from her parents and kept at Children’s Hospital in Boston for months after doctors there suspected her parents of “medical child abuse” and got the state child protection office to take emergency custody. The stories ( part I and part II) are well documented and disturbing, but I’ve been around the media and health care long enough to know that you can never be 100 percent sure of the real situation just by reading about it.

There are a couple points that stand out for me, however:

  • It is concerning that Dr. Mark Korson, the referring physician from Tufts –who is a knowledgeable and level headed guy– was not allowed to take part in the process after Justina was confined and that the patient did not get to see the gastroenterologist Korson referred her to. Children’s really needs to explain that part of the story
  • There are definitely cases where child abuse is wrongly asserted by physicians and the consequences for kids and parents can be absolutely devastating. When a child is seriously ill, some parents may lose it and act somewhat crazy, adding to the suspicion that they are causing the problem in the first place. I can empathize with the families while at the same time understanding where the doctors are coming from

Child abuse is real, but there are also physical illnesses that look like child abuse. And there’s no guarantee that physicians will sort out the true diagnosis. There is a helpful article (The Differential Diagnosis of Child Abuse) by Michael Segal, an MD PhD pediatric neurologist. It should be required reading for anyone in a position to make allegations of abuse. The article covers findings including lethargy/coma, bleeding and bruising, failure to thrive, immunodeficiency, high muscle enzymes, broken bones and recurring odd complaints. For each finding there is an explanation of potential underlying reasons other than child abuse.

However the Pelletier story comes out, I’m glad that we still have an independent, local newspaper that puts real resources into these investigations.

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By David E. Williams of the Health Business Group.

Bone marrow donation and compensation: My moral dilemma

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It’s a criminal offense to pay a person to donate an organ. That policy fits well with societal norms that restrict commerce in certain areas. For example we don’t allow people to sell themselves into slavery. We certainly don’t want people to be coerced for financial reasons to sell their organs and endanger their lives.

And yet, arguments for paying for organ donation exist. People die all the time for lack of a suitable organ available for transplant. Is it right to interfere with their pursuit of life, health and happiness by restricting how people use their wealth? And of course doctors and hospitals charge for their services in performing transplants, so it’s not as though there isn’t money changing hands.

The issue has come to the fore again recently, with the federal government’s proposal to ban compensation for bone marrow collected in a less invasive manner. This one touches a nerve for me, because a couple years ago I made a decision not to follow through as a bone marrow donor even after I had been told that I had matched with a patient. More on that in a moment.

Compensation for bone marrow donors has long been banned as part of the National Organ Transplant Act (NOTA), which defines bone marrow as an organ. That made sense in a way because extraction of bone marrow is fairly invasive and somewhat risky. But, according to MedPage Today:

Under a method called peripheral blood cell apheresis, donors receive injections to stimulate HSC production. HSCs are collected via an apheresis machine from donors’ central veins before the remaining blood is returned.

Some places, including a California nonprofit called MoreMarrowDonors.org, wanted to award up to $3,000 in scholarships, housing allowances, or gifts to charity for mixed-race and minority bone marrow donors who donated using the apheresis method. Various advocates of such compensation, including parents of children with leukemia and aplastic anemia, filed a preemptive lawsuit, saying that NOTA’s ban on compensation was unconstitutional if it were to be applied to apheresis.

The feds have responded by proposing to change the definition of bone marrow so that the method of collection is irrelevant.

There are good arguments on both sides of this, and I suggest you check out the MedPage story to learn more.

Meanwhile, here’s my story.  A few years ago I joined a bone marrow registry and had a cheek swab taken. I did it as part of a community event where a registry was signing people up. The staffers were mainly people whose relatives had benefited from bone marrow transplants.

A couple years later I got a call. I had matched up with a patient who needed a bone marrow transplant. I was told to come in for more testing and then possibly undergo a traditional extraction process or apheresis. My initial inclination was to follow through, but after talking to some physician friends who understood the process better, I ultimately decided not to do it and took myself off the registry. As a human being and a father I felt somewhat guilty about my decision, but also quite certain I was doing the right thing for me.

Here are the questions I pondered: If I didn’t follow through, how likely was the patient to find another match? (There’s no way to know –the registry won’t provide any information about that.) How likely was the patient to benefit from a bone marrow transplant and to what extent? (It’s not a miracle cure –and doesn’t always help at all.) I balanced those issues against the small but real safety risk of being a donor –which could ultimately be costly to my well-being and affect my ability to support my family — and the inconvenience of going through the procedure. Call me selfish if you want –I’d certainly be angry if I were the patient needing a transplant as opposed to the donor– but that’s how I decided.

As I reflected on it, I decided I would be willing to donate for a family member or a friend, but not for a stranger. I should have figured that out before signing up but didn’t.

This still leaves the question of compensation open. In my case it would not have made a difference. But I’m sure it would be decisive for others who are hesitant. Whether they should be allowed to be compensated or not I’m still unsure.

A letter to the editor of the Wall Street Journal suggests that this whole debate is beside the point, and that stem cell transplants from other sources such as umbilical cords are solving the problem for us. Maybe the real focus should be to provide better funding to the NIH to advance approaches that make these moral dilemmas go away.

photo credit: umjanedoan via photopin cc
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By David E. Williams of the Health Business Group.

Will work for dental care. Not a bad idea

There’s a big gap in coverage for dental care. It’s not considered part of core health care benefits and so many people –even those with commercial health insurance or Medicaid– lack coverage. The Affordable Care Act addresses only a small part of the gap. That’s a problem because dental health is a key component of overall health care and not something that should be optional.

That’s why I like the looks of an innovative program in Calhoun County, Michigan where uninsured patients can earn credit for dental visits by doing volunteer work such as working in a food bank. Dentists generally volunteer their time and I can understand why:

Kip Etheridge, a dentist who sees patients from the program in his office a few hours a month, said the volunteer work makes [patients] more vested in their care and reduces the number of people who don’t show up for the program’s dental appointments.

“It’s not free care, they work for it and that aspect is what has encouraged dentists to participate,” Etheridge said.

The program rewards volunteers with $100 in dental care per four hours of work. Patients must also go to an oral health class and see a hygienist (paid for by local fundraising) first. Visits to the local emergency room for dental problems have dropped dramatically since the program went into effect.

This is a very nice example of what can be achieved at the local level when people of goodwill collaborate in a pragmatic, creative and non-ideological way. Already the program is being expanded to include chiropractic care and orthodontics.

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By David E. Williams of the Health Business Group.

Harnessing patient activation to reduce readmissions: Interview with Insignia


Hospitals are getting serious about reducing avoidable readmissions now that there are financial incentives to do so. Patients who score high on “patient activation” based on their knowledge, skill, and confidence are much less likely to be readmitted according to research by Judy Hibbard, a professor of health policy at the University of Oregon.

In this podcast interview, Chris Delaney, CEO of Insignia Health explains how his company has commercialized the Patient Activation Measure (PAM) to address the readmission issue.

By David E. Williams of the Health Business Group.

One night stands in health care: I’m quoted

One night stand

Fox Business (Sites Offer Name-Your-Price Health Care Deals) quotes me in an article on health care deal sites. Here’s what I have to say:

“They have the potential to provide increased price transparency by publishing retail prices for health care services,” says David E. Williams, president of the Health Business Group, a consulting firm in Boston. “But sites … which post a price but then encourage patients to offer less actually harm transparency by turning prices into a game.”

Should you use a health care deals site? Williams’ advice is to consider what you need versus what’s being offered, because the deals can come bundled with multiple services that you may not need and shouldn’t pay for. He also cautions that you shouldn’t shortchange your health in a quest for savings.

“Continuity of care is important in health care,” he says. “If you get your teeth cleaned at a different dentist every six months, based on the deal, how will anyone be able to notice if something has changed from the last visit?

“The deal sites encourage the health care equivalent of the one-night stand,” he continues. “Each party tries to get whatever they can out of the initial interaction and writes off the future.”

By David E. Williams of the Health Business Group.
photo credit: {Guerrilla Futures | Jason Tester} via photopin cc

Handwashing: It’s not just for caregivers anymore

Readers know I don’t think patients should be responsible for telling doctors and nurses to wash their hands. That should be the job of the health professionals themselves and the institutions for which they work.  I acknowledge, however, that patients may improve their safety by asking.

But hand hygiene concerns go beyond health care professionals. Patients can also get infections from family and friends who visit, and from not following good hand hygiene practices themselves. And here patients do have a role: I’m totally supportive of having patients ask (demand) that visitors wash hands. Patients should also make sure they’re doing all they can with their own hygiene. Hospitals have a role, too, in educating patients and visitors and providing reminders.

It’s notoriously hard to improve health care provider compliance with best hand hygiene practices and it’s awkward for patients to have to be the hall monitors. But maybe the road to better compliance by doctors and nurses is for patients to be more conscious about their own hygiene and that of their visitors.

You can read more about this topic at FierceHealthCare.

By David E. Williams of the Health Business Group.

Cost containment in health care: Patient attitudes toward overdiagnosis give me hope

False positives from cancer screening tests cause unwarranted stress to patients, drive up health care costs, and can result in physical harm from invasive follow-up or needless treatment. A new study in JAMA Internal Medicine, as described on Auntminnie (Doctors are not informing patients of overdiagnosis risk), gives me hope that attempts to reduce overdiagnosis have a chance of success if framed well.

Conventional wisdom is that more screening is better –that it’s good to have a test just to be on the safe side. People have stories about friends and relatives who didn’t get screened, got cancer and died. That –plus a fear of “rationing”– explains why there is such strong pushback against recommendations to reduce routine screening for breast cancer and prostate cancer. But rarely do we hear about people who were diagnosed with and treated for cancers they didn’t have or that would never progress even though it is incredibly common.

The JAMA article reports on a survey of people aged 50 to 69, which asked about whether their doctors had informed them about overdiagnosis and overtreatment and about how much they would be willing to tolerate such overdiagnosis and overtreatment. I wasn’t at all surprised to read that almost no one (<10% of the sample) was informed by their doctors. I was more surprised that people were so intolerant of screening’s limitations.

Fifty-one percent of the participants said they would not start a screening protocol that resulted in more than one overtreated person per one life saved from cancer death, they wrote. But 58.9% said they would continue to be screened once they had started, even if they learned that the protocol resulted in 10 overtreated people per one life saved.

One of the most startling findings was that 69% of the participants indicated they would not start screening if overdiagnosis rates were more than 10 cases per one life saved, according to [the authors].

“The results of the present study indicate that physicians’ counseling on screening does not meet patients’ standards,” they wrote. “Most individuals desired information about screening harms, which was not given, and attested that this knowledge would matter to them.”

There’s a long and winding path from these findings to a more rational screening and treatment regime, and the results of the survey are far from definitive. But this is one of the most encouraging pieces I’ve read in a long time because it suggests patients are ready to play a more active role in their health care, and that such engagement will tend to lead to lower costs and better outcomes rather than an increased demand for services.

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By David E. Williams of the Health Business Group.

Businessweek: I’m quoted on hospital collection practices

Bloomberg Businessweek has a story on how hospitals are asking for payment from patients upfront. I’m quoted:

“It used to be taboo to look like you were looking for money at a time when you were supposed to be focused on patient care,” David Williams, president of Boston-based consulting firm Health Business Group, said. “It’s not taboo anymore.”

I can’t really fault hospitals for trying to get paid (see Hospitals asking for payment upfront: generally ok with me). Their policy actually reveals some problems with the system:

  • Complexity and delays in the payment system mean a hospital often doesn’t really know how much a patient owes toward their out-of-pocket maximum
  • The growth of high-deductible health plans is good in theory because it gives patients an incentive to avoid unneeded services and seek care at cost-effective facilities. In practice it can act more like a poll tax by erecting high barriers to care for people with low incomes –even if they have insurance– while being inconsequential to those with higher incomes

The poll tax analogy isn’t entirely fair: many lower income people qualify for Medicaid, employers often fund HRAs and HSAs, and the plans’ intent is not to exclude certain classes of people. Nevertheless the impact is analogous in some cases.

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By David E. Williams of the Health Business Group,

Patients should not be responsible for telling doctors to wash their hands

Hospitals struggle to get doctors and nurses to wash their hands. That’s a serious problem, since hand washing is one of the keys to reducing healthcare acquired infections that afflict more than a million patients a year and kill over 100,000. And it’s one of the reasons you should try your best to stay out of the hospital.

For the past few years I’ve heard suggestions that patients should take a more active role, and in fact have the responsibility to speak up. Today’s Wall Street Journal (Why Hospitals Want Patients to Ask Doctors, ‘Have You Washed Your Hands?’covers the topic again, with a pretty strong message that patients need to take charge.

I strongly disagree.

Here’s one excerpt from the article:

The CDC has provided 16,000 copies of a video, titled “Hand Hygiene Saves Lives,” to be shown to patients at admission. In one scenario, a doctor comes into a room and the patient’s wife says, “Doctor, I’m embarrassed to even ask you this, but would you mind cleansing your hands before you begin?” The doctor replies, “Oh, I washed them right before I came in the room.” The wife says, “If you wouldn’t mind, I’d like you to do it again, in front of me.”

And here’s another:

“We’ve been focusing on intensive interventions to improve hand hygiene among health-care workers for decades, yet we’ve really shown very little progress,” says Carol McLay, a Lexington, Ky., infection prevention consultant and chair of the committee that designed the campaign [to get patients to speak up]. “We are trying to empower patients and families to speak up and understand their role.”

Am I the only one that thinks the situations described above are absurd?

Here’s how I see it:

  • If infection control specialists have been failing to make progress with health care workers for decades then they need to figure out what’s wrong and fix it, not throw the problem onto patients. Here are some ideas: education to get more buy-in from clinicians on the idea of frequent hand washing, technology to track whether hand washing is occurring, harsh penalties for lack of compliance –like closing down a hospital floor, or firing or suspending staff, or making lack of hand washing subject to malpractice claims. If you believe the conventional wisdom (which I don’t –but that’s another story) then physicians will be so focused on avoiding lawsuits through defensive medicine that they’ll instantly get to 100% compliance on hand washing
  • The scenario in the video of first asking a doc if he washed his hands –and then not accepting his answer that he just did it but instead wanting to see him “cleanse” his hands again– is ridiculous. That’s not my vision of patient engagement
  • Lack of hand washing is reasonably visible to the patient, but what about all the other things that occur? Is it practical to verify that my doctor performed all the correct diagnostic tests, interpreted the results correctly, made the right differential diagnosis, prescribed the most appropriate antibiotic and dosing level,  that the hospital stored the medications properly and disinfected their equipment, that the nurses didn’t fake their credentials and that their immunizations are up to date, that I was referred to the right specialists, etc.? All of these things –and many, many others– are important, but I count on the hospital to deal with it and the regulators to oversee that it’s done. I want quality ratings that take into account these issues and I don’t mind payment incentives that reward certain behaviors and penalize others

Don’t get me wrong. I hate the idea of doctors and nurses not washing their hands. If I’m in the hospital and I see something I’m unsure of I do speak up. I bring an advocate when I’m a patient and act as one for others. I would even bring up hand washing in certain circumstances.

But I really resent the idea that I’m supposed to be the handwashing police. Hire someone else to do the job.

Even invincibles want health insurance

Young adults are often uninsured. Although some may take their good health for granted and consider themselves “invincible” that doesn’t mean they aren’t interested in health insurance. A new study by the Center for Studying Health System Change found that only 22 percent consider themselves “healthy enough” that they don’t need health insurance. The real issue is the cost of insurance, something that the Affordable Care Act is designed to address through rules and subsidies.

From the press release:

“Even among uninsured young people who call themselves risk-takers, most say that going without health insurance is one risk they don’t want to take,” said Kathy Hempstead, senior program officer at RWJF. “These results show that demand for coverage is strong, even in this challenging demographic. The challenge for the marketplaces will be to meet this demand by providing these “young invincibles” with products they can afford. If they do, that will benefit everyone.”