Commercial Threats to Social Networking Among Patients

Fourteen months ago I wrote a post about PatientsLikeMe.com, a startup social networking site, that enabled patients with disorders like ALS, MS and Parkinson's Disease, to share experience and contribute to rapid pooling of clinical data in ways that might provide practical guidance. It's an exciting idea, but apart from the omnipresent risk of offering faulty guidance, present in medical appointments as well, it risks cooptation by industry. Here's the most prescient part of the post:

The aim - "providing a better, more effective way to capture valuable results and share them with patients, healthcare professionals, and industry organizations that are trying to treat the disease" - is important. Patients gather information from other patients anyway, and a networking site potentially that lets them extend their opportunity for learning, as from the 1801 ALS patients who are part of the "community," offers a lot.

But it doesn't require Karl Marx to see the risk in a business model that invites partnering with industry. Word of mouth is potent advertising. It will be nothing short of miraculous if drug and device companies do not seek to influence the statistics, just as they influence CME activities...

Many physicians fear "disintermediation" - the process by which patients circumvent the "middleman" role, gather their own information, and develop their own plans for treatment. This is wrong. The emerging web ventures are like medications, with varying constellations of potential benefits, harms, true claims, and baloney. Physicians can provide a distinctive service as knowledgeable, honest brokers - encouraging patients to use PatientsLikeMe and other new ventures, but educating them about risks, side effects, and false claims.

But an article in today's New York Times by Natasha Singer suggests that the concerns I voiced may be coming true.

If you're interested in the Jekyll and Hyde potential of social networking sites like PatientsLikeMe, I suggest that you start by looking at a YouTube video of co-founder Jamie Haywood. It shows the site's exciting potential to produce rapid summaries and analyses of pooled reports from large groups of patients who voluntarily participate. Then go to the PatientsLikeMe website, and click on "information for industry partners."

I'm not a startup expert, but to me it looks like a brilliant business model. I'm comfortable with the use of real time patient reports as a source of information for responsible medical groups and health plans. But the use of the same material by drug companies to hone direct-to-consumer advertising and other commercial goals is creepy. And with regard to privacy, I wasn't reassured by this statement: "Other members, and sometimes Partners (pursuant to written agreements designed to limit the use and disclosure of your personally identifiable information), will be able to view your Profile Data."

PatientsLikeMe and other entrepreneurial ventures that harness web technologies and social networking can transform health care. But there's a substantial risk of cooptation by industry and corruption by the money that can be made.

This isn't a reason for trying to slow down the entrepreneurial energies, but only naive fools would give blanket trust to the ethical integrity of the new ventures.

Case Closed on the Conservative Attack on the Health Insurance Mandate

I've written several posts on the right wing attack on the requirement that individuals obtain health insurance or pay a modest penalty, most recently here and here.

Although the challenge to the mandate being brought by twenty Attorneys General (all but one Republican, and many seeking credentials for forthcoming election campaigns) has not yet come to court, in my view the case is now closed. What convinced me is an article by Charles Fried, the brilliant constitutional lawyer who served as Solicitor General under President Reagan from 1985 - 1989.

Fried cites a recent 7 - 2 Supreme Court ruling in the recent United States v Comstock case. The question in Comstock was whether the federal government has power to detain persons deemed sexually dangerous when their prison sentence has been served. All justices except Thomas and Scalia agreed that the Constitution allows the federal government to regulate interstate commerce and protect the public from harm, such as the danger posed by the appellant.

Here's what President Reagan's Solicitor General had to say about the suit against the mandate:

For the health regulation to work, though, it is “necessary and proper’’ — the clause explicitly in play in Comstock — to nudge (with the $700 penalty) the young and healthy to enter the insurance pool, and not to wait until they are old and infirm. Insurance just won’t work if you could wait until your house is on fire to buy it. But, say the objectors, this is not penalizing someone for doing something harmful; it’s penalizing him for not doing something, and that’s somehow different.

It is not. Congress has the power to enact the regulatory scheme and to design it in a way that is “necessary and proper’’ to its good functioning, and that means sweeping in the unwilling...

A more telling precedent is the Supreme Court’s 1905 decision in Jacobson v. Commonwealth, which rejected a complaint against Massachusetts’s compulsory vaccination law that it said infringed the “inherent right of every freeman to care for his own body and health in such way as seems to him best.’’

Whatever Jacobson’s right to care for himself, he had none to impose risks on his fellow citizens. A healthy, young person who persists in staying out of the insurance pools imposes a burden on his fellow citizens also.

The Supreme Court will ultimately have to rule on the constitutionality of the insurance mandate. But when the leading conservative constitutional lawyer sees the law as Charles Fried does, it's a stake in the heart of the Attorney General's suit. And if the Supreme Court recognizes the same communitarian values that Fried emphasizes, it will provide an important piece of moral education for the country.

Suicide and the Internet

On April 23, G. Paul Beaumaster, Prosecuting Attorney in Rice County Minnesota, filed a complaint against William Francis Melchert-Dinkel, for violation of a Minnesota law that states "Whoever intentionally advises, encourages, or assists another in taking the other's own life may be sentenced to imprisonment for not more than 15 years or to payment of a fine of not more than $30,000, or both."

The complaint details a horrifying story. Melchert-Dinkel, a 47 year old husband, father, and licensed practical nurse, was obsessed with death and suicide. He trolled websites about depression and suicide, and contacted people who were considering suicide, using pseudonyms like "Cami" and Li Dao." He offered information on the best way to kill oneself, and encouraged people to do the act. In the guise of a sympathetic female nurse, "Cami" suggested that the potential suicide would be happier in heaven.

In 2008 "Cami" entered a suicide pact with Nadia Kajouji, an 18 year old student in Canada. Nadia would kill herself by jumping off a bridge. "Cami" would hang herself the next day. Nadia jumped, and died. "Cami" didn't. When the police confronted Melchert-Dinkel he confessed to having encouraged Nadia and scores of others to kill themselves.

I support the Oregon Death with Dignity Act, under which people with terminal illness can obtain prescriptions for lethal overdose, under carefully controlled circumstances. But Melchert-Dinkel's actions have nothing in common with the thoughtful, though still controversial, program in Oregon. Melchert-Dinkel, by his own testimony, was motivated by a perverse fascination with death. He exploited suicidal people the way rapists exploit their victims.

If Melchert-Dinkel wrote essays praising suicide, he would be misguided but within his right to free speech. But encouraging suicidal people to kill themselves is like shouting "fire" in a theater. It's an incitement to action, not a free expression of opinion. I'll be surprised if he does not spend time in prison. He deserves punishment.

I tried to visit suicide chat rooms to see what kinds of interactions occur. But my access via my employment site is blocked for sites labelled "violent." The web has been a godsend for many people with serious ailments, who "meet" others with the same conditions and swap advice and support. Unfortunately, sites like those Melchert-Dinkel preyed on bring together vulnerable people, many of whom suffer from psychiatric illnesses. In U.S. society adults have a "right" to consort with whomever they choose. But the Melchert-Dinkels of the world don't have a right to exploit their penchant for death.

(The complaint against Melchert-Dinkel makes fascinating (though grisly) reading. It's available here.)

Purpose in Life, Alzheimer Disease, and Medical Ethics

This week I came upon a fascinating article in the March issue of the Archives of General Psychiatry: "Effect of a Purpose in Life on Risk of Incident Alzheimer Disease and Mild Cognitive Impairment in Community-Dwelling Older Persons." The researchers found that "greater purpose in life is associated with a reduced risk of Alzheimer Disease and Mild Cognitive Impairment."

The study is part of the Rush University Memory and Aging Project. More than 1200 elderly people in the Chicago area have agreed to detailed annual assessments and to organ donation at the time of death! 951 had baseline evaluations of purpose in life and were followed for up to 7 years. Those in the top 10% for purpose were 2.4 times as likely to remain free of Alzheimer Disease than those in the bottom 10%. This correlation held after correcting for a number of potentially confounding demographic, psychological and medical factors. Purpose in life was also associated with slower cognitive decline for those who developed cognitive impairment during the followup.

This is a major study in terms of the large number of subjects, careful assessment at baseline, and long term followup of cognitive function. The major limitation is that a correlation does not establish causality. It's possible that a common factor causes both stronger purpose and cognitive health.

"Purpose" was assessed with a simple 10 item measure asking subjects to respond to statements like "I feel good when I think of what I have done in the past and what I hope to do in the future," "I have a sense of direction and purpose in life," and "I used to set goals for myself, but now that seems like a waste of time." There was no assessment of the content of the purpose. "High purpose" subjects could be motivated to "get even with my enemies" or to "contribute to the next generation."

Although finding a correlation does not prove a causal connection, and we don't have rigorous evidence for the preventative potential in purpose, those who deal with elderly populations should take an interest in the degree of purpose elderly folks - including home bound frail elderly - experience in their lives. Showing interest can sometimes heighten the sense of purpose itself. If you ask me about what's meaningful in my life, probe to understand the details, and seem interested and enthusiastic about what you hear, that can put more wind in the sails of my purposes! The risks of building in this practice seems quite low, and taking this kind of interest in a population that is often seen as over the hill shows respect.

But we should anticipate ethical dilemmas as well. We have to be on guard against proselytizing for purposes we endorse but which may not be endorsed by the person we're dealing with. You may be very committed to religious belief, but I may believe that God is dead. Or you may be a committed atheist, confused about how to respond to my goal of converting the people in my nursing home to my fundamentalist faith.

Finding purpose, meaning and value in life is a basic challenge for adolescents and young adults. But the Rush study shows that this creative human function is alive and well in old age, and may even have health promoting potential!

Health Care as a Right - the Showdown Approaches

All developed countries except the U.S. recognize a right to health care. Now twenty states, led by Florida's Attorney General, have brought suit against the Patient Protection and Affordable Care Act (the official name of the health reform bill) to establish a new right - the right not to have health insurance!

Florida has been chosen to lead the charge because the case can be filed in the Pensacola court (part of the conservative 11th Circuit of the U.S. Court of Appeals), where it will be heard by a Republican appointee.

From the perspective of ethics and common sense, the suit comes straight out of Alice's Wonderland!

Reduced to its essence, the states are saying - "get off the backs of individuals and state governments!"

With regard to individuals, the states argue that requiring individuals to obtain health insurance or pay a health tax encroaches on basic liberties. We'll soon be seeing the pithy language on Tea Party placards:

"In effect, the Act compels said persons to have healthcare coverage, whether or not they wish to do so, or be subject to sanction. The Act thus compels persons to perform an affirmative act or incur a penalty, simply on the basis that they exist and reside in the United States."

With regard to the states themselves, the argument is essentially that the Act will require substantial state effort and expenditure. This is true.

The key question is - what is the alternative to imposing requirements on individuals and state governments?

There are two essential choices. If we continued to declare that it's OK for 15 - 20% of the population to be uninsured, we wouldn't have to mandate new responsibilities for individuals and state governments. But if we elect to join the civilized world and recognize reliable access to decent health care as a societal responsibility, the only viable alternative to the Patient Protection and Affordable Care Act is a system supported by direct federal taxation. This could be a single payer Medicare for all program or a tax supported multiple insurer system.

Only wacko libertarian extremists will be ready to assert that individuals who want health care should be responsible for creating their own access, without any outside support. It's one thing to recognize the right we all have to refuse unwanted care. It's another to say "tough luck" to all those who want decent care but can't afford it.

The brief filed by the states makes no mention whatsoever of the moral requirement for a civilized society to ensure access to care for its citizens. The spirit of the argument is entirely "leave us alone." I'm sure the individuals who filed the brief are caring people in their personal lives, but the argument they make is callous and cruel.

(The 23 page suit is intelligible to the non-lawyer - if you have time I encourage you to read it. Also see Kevin Sack's informative New York Times article.)

Primary Care and "Small e" Ethics

In teaching ethics I like to distinguish between "large E" and "small e" ethics. "Large E" situations involve relatively rare but highly dramatic clinical questions like whether to turn off the respirator for someone without a family or an advance directive. "Small e" situations involve everyday matters like returning telephone calls that often go under the radar and don't get considered in ethics discussions.

Dr. Richard Baron's important article "What's Keeping Us So Busy in Primary Care? A Snapshot from One Practice" shows just how important small e ethics can be. Baron's five physician "Greenhouse Internists" primary care practice used its electronic medical record to track their activities in 2008. Physicians averaged 18.1 visits per day, but also dealt with 23.7 telephone calls (80% handled directly), 16.8 email messages, 19.5 laboratory reports, 11.1 imagining reports, and 13.9 consultation reports. In addition to prescriptions written during appointments they averaged 12.1 further prescriptions as well.

A fee for service system pays only for direct patient contact. Greenhouse Internists derives 35% of its revenue through capitation, more than a typical small practice would. This has helped the practice invest in efficiency-heightening infrastructure, like its electronic record system and its website.

The U.S. health policy community has been wringing its hands for decades over the precipitous decline of primary care and the concomitant rise in (a) costs and (b) public dissatisfaction with the health system. There's nothing mysterious about what we're seeing. As is so often true, the enemy is ourselves. We structure medical education so that it creates huge debt for many students. We pay primary care physicians poorly, so indebted students don't go into it. And between the relatively low income, which can only be offset by higher volume, and reduced numbers, which pressures primary care physicians to take on new patients, we run them ragged. It's no surprise that patients feel rushed as well.

Baron's article documents the magnitude of uncompensated activity that goes into primary care. As a clinician and as a patient, I've experienced how important these non face-to-face activities can be for the ethical quality of health care. I practiced primarily in a capitated system and was paid by salary (a system I favor), so I wasn't financially penalized for providing indirect services. In the patient satisfaction surveys we regularly did I got feedback on just how much my patients valued my relative promptness and reliability in returning phone calls. And, patients who liked to use email were very grateful for my readiness to incorporate it into their care. And as a patient I've similarly appreciated being able to exchange email with my primary care physician.

I have the privilege of co-facilitating a longitudinal seminar for some of the best primary care residents in the U.S. I've learned a lot from them about the clinical and human richness primary care can offer. Baron's practice has set itself the task of engineering its logistics to allow caring physicians to live the same values:

The core of primary care remains the longitudinal, trusted relationship with the patient, in which diagnostic skill, therapeutic understanding, and compassion come together for the benefit of the patient who seeks our help. Achieving that mission for patients with varying communication and computer skills is a daily challenge, even as our office faces a fragmented payment system and rapidly evolving technology. The work we describe arises from the needs of patients in a society that assigns many roles to physicians — from making diagnoses and providing treatment to ordering tests and filling out forms — and the practice must be organized to respond reliably. How and by whom the work is done is a continuing project of primary care redesign, dependent on both the skills of available nonphysician staff and the extent of information-technology support.

Greenhouse Internists are doing their part to live the ethical vision of primary care in their daily work, and Baron's article helps the rest of us understand more about the impediments our health "system" forces them to deal with. For health care reform to work, we'll have to make life easier for all the Greenhouse-like practices that want to walk the talk of primary care ethics.

Cadaver Memorial Ceremonies

It's a long time since I studied anatomy in medical school. And my own areas of teaching - ethics, psychiatry and primary care - are a long way from the dissecting table. As a result, a recent article about the ceremony conducted at the end of the anatomy course at Northwestern University brought the custom of cadaver memorial ceremonies to my attention. Given that I purport to be interested in ethics education, I should have looked into these ceremonies long ago!

When I studied anatomy in the early 1960s, we were asked to treat the cadaver with respect. But exploring the emotional and spiritual meanings of the human encounter with the person we dissected was too touchy-feely for the era.

This year, at Northwestern's end-of-course ceremony, four families of the people who were dissected attended. One woman, along with her husband, agreed to meet with the students who had dissected her mother's body:

...Watching all of it were Ellen Griffin-Stolbach and her husband, Brad, of Chicago, the only family members who met with students. The six team members huddled around the couple, solicitous and humbled.

Their donor was Barbara Halloran, 72, Mrs. Griffin-Stolbach’s mother, who died from lung cancer last year. Ms. Halloran had read an account of a similar ceremony and decided to donate her body to the association.

Mrs. Griffin-Stolbach told the students that her mother was tough on doctors and often just wanted them to listen. Isn’t that so often the case? There’s a lot more going on with patients than the physical, she told them. Be sensitive to the emotions and psychology, she urged.

Later, she described the gathering’s importance to her.

“My mother’s body was such an important part of who she was,” she said. “The medical interventions in her life, good or bad, were important. Meeting the students, eye to eye, brought closure.”

Many years ago I had occasion to talk with a patient of mine about her decision to donate her body for dissection. She didn't have children of her own, and the idea of contributing to the education of the next generation meant a lot to her. She'd tried to be useful to others during her lifetime, and wanted to continue that process after death. I wish I could have met with the students who met her at the dissecting table to talk with them about her, as Mrs. Griffin-Stolbach did about her mother.

I did a Google search for "cadaver memorial service" and found stories from many medical schools. I especially appreciated, and recommend, this blog post by a medical student at UCSF and this video from UNC.

Contemporary medical education has something in common with a medieval morality play in which good and evil struggle for the sould of Everyman. Sadly, it's been well documented that the years spent on hospital wards pull students towards cynicism and callousness. Happily, formats like the cadaver memorial services draw students' souls towards compassion and tenderness!

Recission Wasn't Always a Moral Crime

An editorial in today's New York Times celebrated the end of the insurance practice of "recission" - voiding of the insurance contract on the basis of fraud.

Health insurers received well-justified disgrace when they terminated coverage for seriously ill persons for what Timothy Noah in a Slate column called "chickenshit errors":

Rescission (also known as "post-claims underwriting") is the process whereby health insurers avoid paying out benefits to treat cancer and other serious illnesses by seeking and often finding chickenshit errors in the policyholder's paperwork that can justify canceling the policy. In one job evaluation, the health insurer WellPoint actually scored a director of group underwriting on a scale of 1 to 5 based on the dollar amount she had managed to deny through rescission. (The director had saved the company nearly $10 million, earning a score of 3...

Robin Beaton, a retired nurse in Texas, was rescinded last year by Blue Cross and Blue Shield after she was diagnosed with an aggressive form of breast cancer. Blue Cross said this was because she had neglected to state on her forms that she had been treated previously...for acne. Beaton eventually persuaded her congressman, Rep. Joe Barton, to twist Blue Cross' arm, but the delay meant it was five months before she could receive her operation. Otto Raddatz, a restaurant owner in Illinois, was rescinded in 2004 by Fortis Insurance Co. after he was diagnosed with non-Hodgkins lymphoma. Fortis said this was because Raddatz had failed to disclose that a CT scan four years earlier had revealed that he had an aneurism and gall stones. Raddatz replied — and his doctor confirmed — that he had never been told about these conditions (the doctor said they were "very minor" and didn't require treatment), but Fortis nonetheless refused a payout until the state attorney general intervened.

There's no way that cancelling coverage for a patient with breast cancer because she had not listed treatment of acne on her application for insurance can be justified. But see what you think about a situation that first brought the issue of insurance fraud, recission, and fairness to my attention.

More than two decades ago X became my patient after discharge from a hospital for a heroin overdose. X had a longstanding pattern of heroin use. The overdose was not a suicide attempt. X and I defined a set of treatment objectives.

I was surprised to receive a question from the administration of the not-for-profit HMO I was part of. X had enrolled as an individual, which required filling out a health statement. Several questions were about drug use. X repeatedly reported using no illegal drugs. An algorithm had flagged the hospital discharge diagnosis of "heroin overdose." The administrator asked if the diagnosis reflected a "pre-existing condition."

My immediate reaction focused on responsibility to my patient. What possible reason could justify breaking Hippocrates' 2500 year old precept: "All that may come to my knowledge in the exercise of my profession or in daily commerce with men, which ought not to be spread abroad, I will keep secret and will never reveal"? From the perspective of the doctor-patient relationship the answer was a no-brainer - I'd have to keep silent.

In addition to the hallowed medical commitment to respecting confidentiality, I thought about my patient's dilemma. I believe that a civilized society should ensure that all citizens have access to decent health care. My patient was self-employed and could only get insurance as an individual. Standard insurance practice required individuals to fill out a health statement, as part of an effort to prevent people from taking out insurance only when they knew they had a problem requiring care. After all, we don't let people wait to see the smoke before they take out fire insurance! In the U.S. system X couldn't (a) tell the truth and (b) get health insurance.

But then I thought about the other members of the HMO. The HMO budget for care was created by the premiums its enrollees paid. The enrollees were not responsible for the unjust U.S. health system. They were playing by the rules of that system. Should they be responsible for paying for X's care? From the perspective of the HMO membership, recission seemed unfortunate, but fair.

If we believe the media stories, some of the large, for-profit health plans have abused the practice of recission in order to extrude high cost patients. But apart from that abuse, insurance is only there for us when we're sick if we pay into the insurance pool when we're healthy. If we try to be "free riders" - not contributing when we're healthy and enrolling only when we're sick, recission is our just desert.

If we had the universal health system that all developed countries but us have put in place, there would be no such thing as recission. But in the unjust system we have tolerated right up to the present, recission has been an inevitable component.