Malignant: Medical Ethicists Confront Cancer

I've just read Malignant: Medical Ethicists Confront Cancer, edited by Rebecca Dresser. Seven ethicists who have either had cancer themselves (5) or cared for a spouse with cancer (2), or both (1), write about their experience and discuss what that experience might mean for ethics and clinical care. It's a very approachable book. I think most readers of this blog would find it powerful.

Here are some of the main lessons I gleaned from the book:

1. Not surprisingly, direct experience deepens our understanding of the issues we teach about in the classroom and write about on blogs and in print. The deepening isn't conceptual knowledge. It's more that the experience acts as a filter, indicating what's truly important in what we've thought and where we've been naive or callous. In my ethics seminar section at Harvard Medical School we regularly work with cases. I've taken to "becoming" the patient in the case, and interacting with the class in that role. I've found that taking on the persona of the patient - even when that persona is very different, as when I play a teen age female - the role comes alive for me in feelings and perceptions. I become a better teacher for it. If the students learn half as much as I do from those exchanges, the class is a success.
2. Norman Fost describes a remarkable experience. Being worked up for what seemed clearly to be a recurrent kidney stone the resident evaluating him ordered a CT scan. Fost explained to the resident why he thought the scan was (a) medically not called for and therefore (b) an wasteful expenditure. But he didn't refuse it. The scan confirmed what he knew - he had yet another kidney stone. But it also showed a mass, which on further exploration turned out to be an early, and apparently curable, kidney cancer. Kidney cancers are often found too late for cure. Fost believes the CT scan may have saved his life. But he holds to the view that it was wrong to order it and that it reflects an overly interventionist, inadequately cost attentive, US medical culture.
3. Rebecca Dresser and Dan Brock write about decisions they made that in retrospect (a) went against their values and (b) about which they wish their physicians had discussed/argued with them. Dresser's example is especially telling. She refused a feeding tube and was close to death when a nurse talked her into changing her mind. Dresser and Brock speculate that physicians may have learned the lesson of respecting patients' decisions too well! Rather than challenging bad decisions - decisions that go against the patient's values, they too readily acquiesced. In terms of "Four Models of the Physician-Patient Relationship," a valuable paper  by Linda and Zeke Emanuel from twenty years ago, their physicians applied the "informative" model - provided information and then, in effect, followed the patient's "orders," when the reflective give-and-take of the "deliberative" model would have been more useful.
4. Arthur Frank sees cancer support groups as potentially hugely valuable for patients, but he warns that these groups and what he calls the "survivorship industry" can thrust identities that don't fit onto patients. His comments helped me understand something I observed several times in my clinical practice. Patients who had experienced a loss, and who by all appearances were going through painful, but "healthy" grief, were frightened by the fact that they weren't crying more. They had imbibed the view that "proper" grief involved lots of tears and feared that they were full of unshed tears that would act like a poison. Explaining that there wasn't a single "correct" way to experience grief reassured them.
5. Finally, and with most personal impact for me, John Robertson and Leon Kass write in painfully raw terms about accompanying their wives on their journeys with ovarian cancer. Robertson's wife Carlota Smith died. Kass's wife has experienced recurrences, but is still in treatment. I hope that if my wife encounters a similar experience I will respond with the commitment, care, and courage that Robertson and Kass displayed.

There's lots more than I've written about to glean from this moving book!

Allowing import of needed drugs from Canada

Last year I wrote about a well-intended FDA policy about colchicine, a drug used since ancient times for gout, and now for other serious conditions, such as Familial Mediterranean Fever. As an ancient treatment widely used prior to formation of the FDA, colchicine did not require FDA approval as a new drug. Then in 2009, the FDA granted approval to URL Pharma for Colcrys, its version of colchicine, based on randomized controlled trials the company conducted. Because colchicine had never been subjected to the FDA approval process, Colcrys was, in a technical sense, a "new" drug approved for a "new" indication - treatment of gout and FMF - despite the centuries of prior use, and by regulation was entitled to market exclusivity. In 2010 the FDA ordered all other manufacturers to cease production and marketing of their versions of colchicine.

Unfortunately, Colcrys is not effective for some patients with Familial Mediterranean Fever. To maintain their health these patients need the generic form, which must be imported from abroad. A friend recently told me about the new roadblock a family member is encountering. Here's the letter that went to the patient's senators:

I am writing with regards to the recently passed Food and Drug Administration Safety and Innovation Act (S. 3187). The bill includes a provision (Section 708) that may prevent me from being able to import my prescription from Canada, which I depend on for my health and quality of life.

This legislation authorizes the seizure and destruction of safe prescription drug imports valued under $2500. I have a prescription for generic colchicine for a rare genetic disease which I have, Familial Mediterranean Fever. When I tried the US brand of colchicine, Colcrys, I experienced extreme side effects and a relapse of symptoms, resulting in a month of illness, including an overnight stay in the hospital with high fevers and dehydration. Through this experience, my doctor and I discovered that it is essential that I be able to access an alternative brand of colchicine. Due to an FDA ruling, all brands of colchicine except Colcrys were taken off the US market several years ago. I now depend on my prescription from Canada for my health and well being.

When I am able to take colchicine imported from Canada, I have no symptoms and live a normal, healthy life. Without access to this medication, I will experience fever episodes lasting from several days to a month, pain, and inability to eat. It will compromise my ability to finish graduate school, where I am currently working on a challenging program. It will put me at risk of future complications from my genetic disorder.

I am extremely concerned that when Section 708 of Act 3187 is implemented, I will lose access to my direly needed medication. Please let me know what you plan to do to change Act 3187 to allow me to continue my life. Thank you for your time and consideration.

I don't fault the FDA's intentions. But in a country of 300 million people, it will be the rare policy that applies to all in a fair manner. Justice requires a robust exception process in situations like the dilemma of FMF patients who require the generic drug.

The patient did her part in putting the issue onto the public table. Now it's up to the FDA to respond.

Check out this new blog

I've been working for a few months with Dan Callahan, Shep Nuland, and Mary Crowley of the Hastings Center to develop a new blog. It's called Over65. Our aim is to foster a voice for progressive-minded folks over 65 who will comment thoughtfully on health care, social security, and other aging-related issues. We felt that there's a lot talk about  the Medicare generation, but not enough talk from that group. We think of the blog as the first step in what we hope will become a series of linked projects, aiming to build a foundation for more thoughtful policy discussion of issues involving aging and intergenerational equity than has happened to date.

I'll be travelling for two weeks, and will look forward to returning to both blogs when I'm back

Old against young in Japan

If you read about a country with economic problems where "already indecisive leaders [are] loath to upset retirees from the baby boom who make up more than a quarter of the population and tend to vote in high numbers," you might guess that the article was about the U.S. and Medicare. It's not.

It's about Japan and the value of the yen.

In 2007 the Japanese yen was trading at 123 to the dollar. In the post-2008 economic crisis the yen was seen as a safe haven currency. Its value went up. It now trades for about 78 to the dollar.

So what does the exchange value of the yen have to do with intergenerational conflict? An article in today's New York Times explains why the old and the young are fighting about currency.

The strong yen makes imports cheaper. Cheaper imports drive down domestic prices as well. Older people on fixed incomes can buy more. What cost them 123 yen in 2007 costs them only 78 yen now. But a strong yen makes exports more expensive, and Japanese industry - very export dependent - is suffering. This hurts the young.

Japanese political scientists say the government has tolerated the strong yen out of fear of the elderly. Shigeru Ono, a 62 year old retired oil company manager who lives on a monthly pension of 130,000 yen (approximtely $1,660), understands the intergenerational conflict:

The strong yen and deflation have been a boon for us baby boomers. But I also know that they cannot be good for my son’s generation.

The U.S. is struggling to contain the cost of Medicare. Japan is struggling with the impact of a strong yen. In families, grandparents cherish children and grandchildren. But in wider society the relationship between generations is playing out differently.

The future well being of both countries depends in large measure on the balance of competition and cooperation between old and young.

Massachusetts nibbles at the cost bullet

On the last day of the legislative session, the Massachusetts Senate unanimously approved a 350 page health reform bill. The House approved it by 132-20. Governor Patrick has said that he will sign it. (The bill itself is not yet available on line - I've read about it but not yet seen it.)

Like the Affordable Care Act, the Massachsetts bill includes a wide range of policy steps - creating an oversight agency, promoting transparency about costs, supporting wellness programs, encouraging global budgets and an end to fee-for-service, and more. But the key component is the line in the sand about overall health care costs: between 2013 - 2017 cost increases should not exceed the growth of the state economy. For 2018 - 2022 cost increases should be at least 0.5% below the state economy growth.

So what happens if costs exceed the target?

Since total health care cost is the sum of thousands of independent charges (by hospitals, medical offices, equipment vendors, and more) and payments (by insurers, patients, government, and more), there's no one to hold accountable and no real enforcement mechanism.

Representative Steven Levy's twitter comment on the cost containment commitment was (1) "lol" and (2) "only concrete thing in it is more bureaucracy and fees." He's not right, but he's not completely wrong.

Even without a true accountability structure or enforcement mechanism, the cost commitment matters. The situation reminds me of all the times my wife and I said to our sons some form of - "we expect you to do XYZ." By the time they were teen agers they were smart enough to ask - "what happens if I don't do XYZ?" We tried to avoid too much sabre rattling and generally said something like "we expect XYZ to happen - if it doesn't we'll deal with it then..."

Of course XYZ didn't always happen. Sometimes there were consequences. Sometimes there were apologies and resolutions to do better. Occasionally our sons would persuade us that XYZ was the wrong expecation - it should have been ABC. But we always took it seriously if XYZ didn't happen.

Managing a state with 6.5 million residents and $80 billion in health expenditures is rather more complex than managing a four person family, but I expect the same process I experienced as a parent to happen in Massachusetts.

Until now we've not had explicit expectations for health costs. Now we do. Measuring how we're doing in relation to a commitment is different than wringing hands over "unsupportable cost increases." Our legislators and Governor have made a promise. It's not clear how they, and we the citizens, will accomplish it. But we can't avoid paying attention to it, working on it, learning from what happens, and taking next steps.

The law sets a process in motion. It's not a silver bullet. It's more like tying a string around  a finger to ensure vigilant attention. But that's more than our state, or any state in the U.S. has done before.

Jekyll and Hyde in Medical Practice

 I've written many times about how doctors who exploit patients sexually can provide excellent care to and be idolized by their other patients. I just learned from my friend Dr. Brian Hurwitz that the same can be true for doctors who murder their patients!

I first met Brian when I spent three months at the King's College London Centre for Medical Law and Ethics in 1992. He was doing an MA at the Centre, and allowed me to spend a fascinating day with him in his general practice surgery. For the past ten years he's been D'Oyly Carte Professor of Medicine and the Arts and Director of the Centre for the Humanities and Health at King's College.

Brian sent me a not-yet-published chapter he's written about Dr. Harold Shipman, the GP who was ultimately found to have been a serial killer who murdered more than 250 of his patients. The chapter included this remarkable quote from the son of one of the patients Dr. Shipman was found to have murdered:

I remember the time Shipman gave to my Dad. He would come around at the drop of a hat. He was a marvellous GP apart from the fact that he killed my father.

Shipman never admitted his guilt and refused to talk with psychiatrists, as did his surviving family. He committed suicide in prison in 2004. Although many colleagues and members of the community where he practiced noted strange occurrences in Dr. Shipman's practice, no one was prepared to draw the retrospectively obvious conclusion - a trusted, beloved physician was killing his  patients!

I think the best comment about people like Shipman comes from "The Shadow," an old time radio detective whose adventures I followed as a child. (The Shadow had the gift of invisibility.)

Who knows what evil lurks in the hearts of men? The Shadow knows!

Who's taking care of Mom?

The July Journal of the American Geriatric Society has a disturbing article - "Hiring and Screening Practices of Agencies Supplying Paid Caregivers to Older Adults."

Researchers at Northwestern School of Medicine posing as prospective clients seeking a caregiver for an elderly adult relative, contacted 180 agencies and asked about hiring, screening, and supervisory practices. Their findings aren't pretty!

67% of the agencies required experience, but this was often assessed by self-report. 62% checked references. 92% checked criminal background within the state, but no agencies checked other states, meaning that someone who had been convicted elsewhere would appear to have a clean record. English language proficiency was assessed via the interview, and no agencies assessed health literacy (ability to understand physician recommendations, dosage schedules, and so forth). 31% conducted drug screening. 7% verified citizenship or visa status. Training and supervision were very limited. The researchers conclude:

The screening and training practices in use by caregiver agencies are highly variable and often of poor quality. Using an agency to hire paid caregivers may give older adults and their families a false sense of security regarding the background and skill set of the caregivers.

Home care for the elderly has the makings of a perfect storm. It brings together vulnerable elderly with a marginalized population of poor, often immigrant, workers. This is a setup for exploitation - sometimes of the elderly by the "caretaker," and sometimes of the caretaker by the agencies that hire them.

When my father, who lived 1,000 miles from where I was, lost his vision and entered the early stage of cognitive decline, my cousin needed a place to live and moved in with him. He provided eyesight, companionship, and driving. My father provided lodging and paid for food. It was a true win/win situation.

But this kind of good luck is the exception, not the rule.  Agencies, like the 180 surveyed in the study, are filling a vacuum in our fragmented society. Unfortunately, as the study reveals, being hired by an agency is not a reliable stamp of approval.