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!

Using the Web to Improve Care for Depression

I've imagined that if I were starting my career in psychiatry now I'd work at the intersection of clinical care and the web. A recent article on "Web-Delivered Care Management and Patient Self-Management Program for Recurrent Depression: A Randomized Trial" convinces me to stick with my fantasy about what I'd do if reincarnated.

The project was conducted at The Permanente Medical Group in Northern California. Patients with chronic or recurrent depression were invited to participate in a randomized trial of usual care compared to usual care plus a web-based care management and patient self-management program that was available for 12 months. The web program included self-monitoring tools, secure messaging with a nurse care manager, depression education stressing cognitive behavioral methods, a monitored discussion group, a personal database, task lists, and an appointment calendar. Interviewers blind to the treatment condition interviewed the patients at 6,12, 18 and 24 months. Participants could enlist a "care partner" for whom web-based materials were also available.

The outcomes were impressive. The "experimental" group had significantly greater reduction in depression that lasted through the year after the web-based intervention ended. They had more confidence in their ability to cope with the mood disorder and more satisfaction with their care. The intervention itself cost $345 per participant. The nurse care manager logs indicated that a nurse could manage 200 patients in ten hours a week. There was no difference in total medical costs between the two groups.

So why do I write about this on an ethics blog?

In 1994 I was asked to edit a quarterly column about managed care for the American Psychiatric Association journal Psychiatric Services. (I edited and wrote the column for ten years.) Readers probably wanted to read about the evils of managed care, but I felt there was more than enough managed care bashing available, and chose to develop columns on how to manage care in ways that were clinically informed and ethically admirable. My underlying belief was, and is, that managed care, "appropriately" conducted, is the most ethical way to structure a health care system.

The e-care program at Kaiser Permanente took evidence-based components of effective treatment for depression and "re-engineered" them into an efficient web-based format. The medical group carried out the intervention and studied it in a rigorous manner. Their work combined clinical innovation with development of valuable new knowledge. The intervention appears to deliver more benefit at no increase in cost. "Benefit" is a bland word, but anyone who has experienced depression or is close to someone who has knows how much suffering the condition can entail.

There's an ethical imperative for us clinicians to evaluate what we do in order to make treatment more effective and efficient over time. That's what the team at Kaiser Permanente and their colleagues did. It would have been clinically and ethically acceptable for them to have implemented the program without studying its results, but they conducted research along with implementing the program. As a result, we're smarter and have new tools for making treatment better. That's why I write about their work in an ethics blog!

Why Patients Should Have Easy Access to their full Medical Records

Two articles in today's issue of the Annals of Internal Medicine present research on patient attitudes towards access to their doctor's notes: do they want to read the notes? do they think reading notes could be harmful? and, would they share the material with others? The articles and the accompanying editorial put some flesh onto the often vacuous buzzword "patient-centered care."

One article discusses OpenNotes, a year-long test of giving patients ready access to their primary care physicians' notes at sites in Boston, rural Pennsylvania and Seattle. The other describes a VA survey of patients who use My HealtheVet, the VA personal health record system.

Virtually all respondents believe that having access to their doctors' notes would help them. A minority (fewer than 1 in 6) was concerned that the notes would confuse them or cause worry. In the VA survey, 4 of 5 would want to share aspects of their record with family caregivers and other physicians.

The editorial described of how the M.D. Anderson Cancer Center has given patients and their referring physicians access to the Anderson electronic medical record. Since May 2009 more than 40,000 patients have viewed their records over 605,000 times, and 1,300 referring physicians have accessed the records of their patients over 28,000 times. 84% of Anderson's active patients have obtained access to their records. The editorial concludes:

Any health care organization with an electronic medical record and a secure Internet portal can provide patients and referring physicians with real-time access to medical records from anywhere in the world, opening the door to levels of patient engagement and care coordination not previously possible.

I believe that ready access to our own medical records is an important piece of what patient-centered care will mean in the future. The group I practiced with for thirty five years was using an electronic record when I joined. By the good fortune of having been forced to learn touch typing in middle school, I kept the keyboard on my lap and could look at my patient while making notes. I often consulted them about what we should put into the record. In the future I hope that in addition to having real time access to their records there will be ways for patients to make entries of their own. That's collaborative care!

The OpenNotes team compares the innovation they are testing to a new drug. OpenNotes is approaching a potential policy change in an admirably empirical manner. There's lots of reason to be optimistic about the benefits the intervention will offer, but my optimism is a hypothesis, not an established truth.

Self-Tracking, Psychiatric Ethics, and the Changing Patient-Doctor Relationship

A recent New York Times article - "A Dashboard for Your Body" - led me to nose around the web to learn more about developments in what is often called "self-tracking."

It's a fascinating area that is likely to change medical practice, the patient-physician relationship, and even the ways in which we think about ourselves.

Home monitoring devices are already letting clinicians - and perhaps more importantly, family members - keep a virtual eye on the frail elderly and homebound people with chronic illnesses. When our dispersed lives keep family members and close friends from keeping a literal eye on a person in need, devices with internet connectivity allow tracking of vital signs, blood sugar, movement in the living space, eating, and more.

These capacities would have been useful to me, an only child, and my father, in his 80s and legally blind from macular degeneration, during the years he lived in Florida, a thousand miles away. The telephone, and the front desk in the building he lived in, were the tools we had to rely on. Applied wisely, the emerging technologies will make it easier and safer for folks with reduced capacity for self-care to live at home, which is what most prefer.

My search led me to a fascinating article - "The Data-Driven Life" - that describes how some obsessive young technophiles monitor and chart their moods, alertness, uses of time, and much much more. While some of the self-monitoring verges on lunacy, some is potentially transformative.

In medical practice, we do a lot of data collection with our patients (think of the "blood pressure check" or monitoring drug levels). We also spend a lot of time encouraging patients to monitor themselves. The new devices shift the locus of control, power, and knowledge from physicians to patients. In place of coming to the office for a blood pressure check or a blood draw, the new technologies let patients do these themselves. In place of the physician's office notes the patient has his own medical record.

Some years ago a patient of mine with depression (working with her on that was my job) and brittle diabetes, consulted me about problems with her medical team. She had created spread sheets correlating glucose levels, insulin dosage, and other factors. These led her to hypotheses about her regimen. Her team didn't explicitly call her "uppity," but they didn't respond well to her wish to share the driver seat with them. Here my job was to coach her on how to shape a new form of collaboration with her team. Happily, it worked.

Self-tracking may turn out to be especially useful for psychiatry and behavior change. In mental health treatment, patients often relate to clinicians the way our forebears related to oracles. They pose questions like "why did I feel that way?" and "what put that idea into my head?" These are important questions, but seeing the clinician as the all-knowing source of insight is disempowering.

The article on "The Data-Driven Life" identifies implications for future psychiatric practice:

"...a 26-year-old filmmaker named Toli Galanis, [reported] 'I know that immediately after watching a bad movie I am more apt to be negative about my career prospects as a filmmaker'...tracking has made him better able to detect the influence of seemingly trivial circumstances on his mood and decisions.

The idea that our mental life is affected by hidden causes is a mainstay of psychology. Facility in managing the flow of thought and emotion is a sign of happiness and good adjustment. But how is it done? Nearly every therapeutic prescription involves an invitation to notice, to pay attention. Once we have a notion in our sights, we can attack it with an arsenal of tools: cognitive, psychoanalytic, even spiritual. But none of these will tell us if we’ve missed something. You may simply have failed to notice a debilitating habit, a negative correlation, a bad influence."

This next vignette shows how self-tracking can be combined with social support:

"Jon Cousins is a 54-year-old software entrepreneur and former advertising executive who was given a diagnosis in 2007 of bipolar affective disorder. Cousins built a self-tracking system to help manage his feelings, which he called Moodscope; now used by about 1,000 others, Moodscope automatically sends e-mail with mood-tracking scores to a few select friends. 'My life was changed radically,' Cousins told me recently in an e-mail message. 'If I got the odd dip, my friends wanted to know why.' Sometimes, after he records a low score, a friend might simply e-mail: '?' Cousins replies, and that act alone makes him feel better. Moodscope is a blended system in which measurement is supplemented by human sympathy. Self-tracking can sometimes appear narcissistic, but it also allows people to connect with one another in new ways. We leave traces of ourselves with our numbers, like insects putting down a trail of pheromones, and in times of crisis, these signals can lead us to others who share our concerns and care enough to help."

Toli Galanis shows how to use self-tracking as a source of insight to guide self-management. Jon Cousins shows how to use self-tracking to strengthen social support. Developing insight, improving self-management, and strengthening constructive relationships, are central components of virtually every form of psychotherapy. Tools that provide these functions will allow some potential "patients" to be their own therapists, and will enable others to come to therapy having done valuable "pre-work."

When I did my training, our patients' families and friends were often seen as intruders on the therapeutic process. In subsequent decades psychiatry and psychology wised up and learned to work with patients in the context of their social environment - using it when it was constructive and trying to change it when it was not. I foresee a time in the not-too-distant future when we'll be working with their iPads as well!

Grandma and her Robot

I'd never heard of Paro, a six pound robot modeled on a baby harp seal, until I read about him (for me, Paro is a "he") in the New York Times on Monday. Paro was developed in Japan for use with the elderly, especially those with dementia. If you go to the company website you can see videos of nursing home residents holding and petting Paro. A man, who is said to have been non-communicative, is shown singing to Paro.

Paro has internal sensors, responds to his name, and apparently can adapt to the preferences of the person interacting with it. The robot was developed in Japan, which has a rapidly expanding "old/old" population, as a source of therapeutic contact.

So - is Paro a humane creation or another sign of our loss of humanity? Is he an ethically acceptable invention or a monstrosity? The Times discussed the ethics of Paro with Sherry Turkle, Professor of Psychology at MIT:

As the technology improves, argues Sherry Turkle...it will only grow more tempting to substitute Paro and its ilk for a family member, friend — or actual pet — in an ever-widening number of situations.

“Paro is the beginning,” she said. “It’s allowing us to say, ‘A robot makes sense in this situation.’ But does it really? And then what? What about a robot that reads to your kid? A robot you tell your troubles to? Who among us will eventually be deserving enough to deserve people?”

Last year I wrote about these questions in a post about CosmoBot, a 16 inch tall robot used in treating children with severe autism:

Experimenting with robot caretakers could seem like an ultimate form of dehumanization. In my view, the robots themselves are ethically admirable. The ethical uncertainty is how we humans use the robots. Ventilators are a kind of primitive robot carrying out a single repetitive function. When we use them well we help sick people recover and save lives. When we use them mindlessly (robotically) we flog patients and prolong the dying process.

Perhaps I have a bit of the robot in me - I'd say exactly the same thing again!

As I kid I loved Ray Bradbury's story "Marionette's, Inc.," in which a husband who wants to leave his wife but doesn't want to hurt her purchases a robot of himself. On the last night before departure he feels a tender anticipatory sadness and puts his head against her chest. He hears a robotic "tick, tick," not a human heart.

There's no doubt that technologies like Paro or the robots in Bradbury's story could undermine deeply held human values. If we give grandma a Paro and stop visiting her we're committing a moral wrong, even if grandma takes just as much pleasure in Paro as in our visit. We owe grandma our best human effort, and we owe ourselves a commitment to learn all we can from her.

Sherry Turkle is right to imagine the possibility of a slippery slope of progressive detachment from those we should be closest to. That could happen, and probably has already happened, since Paro has been marketed since 2004, and more than 1,000 are in use in Japan. But Eileen Oldaker, the focus of the New York Times story, used it to supplement the loving visits she made to her mother. Paro was an add-on, an extension of her caretaking attention, not a replacement.

I'm comfortable with the argument I'm making here, but I'm aware of an apparent inconsistency with my views on gun control. The NRA argues that guns aren't bad, bad people misuse them. They're right. But for me the magnitude of harm bad people create with handguns and automatic weapons justifies restricting access to them. My impression is that thus far the Paros and CosmoBots of the world have done much more good than harm. If we see an epidemic of Paro-induced neglect of the elderly like the epidemic of gang shootings we've recently seen in Boston, I'll be on the side of Paro-control.

The Ethics of Virtual Medical Visits

OptumHealth, a division of UnitedHealthGroup, will soon be offering a web-based platform for connecting patients and doctors by video. When the largest health insurer enters the E-visit space we know a change is coming. The Optum program will roll out in Texas in 2010.

I think virtual visits are a great step forward. But I'm chastened by this critique in the article about Optum:

"This is a pale imitation of a doctor visit. It’s basically saying, ‘We’re going to give up any pretense of examining the patient and most of the nonverbal clues that doctors use.'"

If the quote were anonymous I might have dismissed it as fuddy-duddyism. But it's from Dr. David Himmelstein, a friend, a superb primary care physician, a brilliant policy researcher, and co-founder of Physicians for a National Health Program (PNHP - the single payer advocacy group) - the opposite of a fuddy-duddy!

Experience with E-care is just beginning to emerge. In January, the Hawaii Medical Service Association (HMSA - Hawaii's Blue Cross Blue Shield) began offering 24/7 access via telephone and the web to physicians in its network who sign up to provide the service. Hawaii is a natural place to start, since for a number of patients, seeing a doctor in person would require flying to another island. If I were a primary care physician in Hawaii, I'd sign up to do it!

The infrastructure is provided by American Well, a Boston-based company that provides secure infrastructure for web visits, automated billing, and care coordination. The technologies involved aren't new, but packaging them to create tools easy for patients and clinicians to use is a valuable step forward.

I write about Optum and American Well on an ethics site becuse the fundamental step of trying to meet "constructive," "health promoting" patient preferences evinces an ethical focus on patient and public values. Even in my dark ages psychiatry practice I had patients who were VERY grateful for the opportunity to use email to monitor and manage the medications we were using, or to use email to discuss issues we had initially opened up in the office. And when email served my patients' needs it was a win/win tool, since I could access it from home at times that were convenient for me as well.

David Himmelstein is absolutely correct in noting the ways in which E-visits fall short of what an expert physician can transact in the office. But there is a segment of the public that places more value on convenience and timeliness than on a high quality in-person relationship. I have less of a sense of the pros and cons of E-visits for this segment, but it's an experiment worth conducting, on the hypothesis that E-access is better than no access!

(More information on the HMSA program is available from a Fortune article here and a Business Week article here.

Health Care Robots

The title of this post isn't a metaphor. It's really about robots.

The most recent issue of "Proto," a web-based magazine on innovation published by the Massachusetts General Hospital, describes the development of "socially assistive" robots in fascinating detail. Early trials show that robots can help children with autism. CosmoBot, a 16-inch-tall robot taught Libby, a six year old with severe autism, to imitate movements in a Simple Simon way. Libby hadn't responded to human teaching efforts, but CosmoBot's patient repetition did the job.

In India I've observed remarkable examples of "socially assistive" human care in which poor people carried out repetitive care tasks with the elderly with skill and sensitivity. The U.S. and Europe have fewer people available to do this kind of work and willing to do it. The MGH article quotes Martha Pollack, dean of the University of Michigan School of Information - “The number of younger adults for every older adult is decreasing dramatically, and we’ve never before seen these percentages of people over 85. Robots will never replace human interaction, but they can augment it.”

When I worked at the Massachusetts Mental Health Center during the summer after my first year at medical school I heard about an experiment that would never get by an IRB today. Subjects from a population seeking psychotherapy were given the option of speaking to a tape recorder and were told that a therapist, who they would never meet, would listen to what they said. That was it. No therapist listened to the tapes. No one did. But when the subjects were asked about their "treatment" a remarkable number reported benefit, and felt cared for by their non-existent "therapist."

Our human nature prepares us to be helped by inanimate objects or non-existent therapists.

Experimenting with robot caretakers could seem like an ultimate form of dehumanization. In my view, the robots themselves are ethically admirable. The ethical uncertainty is how we humans use the robots. Ventilators are a kind of primitive robot carrying out a single repetitive function. When we use them well we help sick people recover and save lives. When we use them mindlessly (robotically) we flog patients and prolong the dying process.

Here's what Carole Samango-Sprouse, director of the Neurodevelopmental Diagnostic Center for Young Children at George Washington University said about Libby, the six year old with autism: “Her mother and the professionals who saw [Libby's new learning] were in tears. It was incredibly encouraging that the robot, through repetition and predictable behavior, was successful in getting her to perform the motions she had seen adults doing for years.”

As Albert Einstein said about atomic energy - "The release of atom power has changed everything except our way of thinking...the solution to this problem lies in the heart of mankind."

Virtual Reality and the Ethics of Cyberspace

A recent Washington Post article “Real Hope in aVirtual World" tells how “rehabilitation” in cyberspace has helped Susan Brown , a 57 year old woman, recover from a severe stroke, Roberto Salvatierra a 32 year old man in Costa Rica, in his struggle with agoraphobia , and John Dawley III, who has Asperger syndrome, improve his reading of social cues.

Harnessing virtual reality for therapy isn't new. Three years ago Scientific American described systematic studies how a virtual SnowWorld reduced pain in burn patients. The Navy put $4 million into virtual therapy experiments as treatment for PTSD.

The Internet is the wild west of today's health care. Caveat emptor -- let the buyer beware -- is the guiding ethical principle for those who surf for therapy in the virtual world. Health professionals can't control what happens on the web, but since many people turn to doctors and nurses for guidance clinicians should educate themselves enough to give advice about how to assess the ethical quality of cyber-offers.

Not many of us can do this yet but we need to learn. We give advice about what medications can be trusted and when a heavily advertised nostrum is quackery. Patients will soon start to expect real guidance about the virtual world.