A Patient Partnering Perspective From the London Tower Fire

A general practitioner from the neighborhood near the tower, Ahmed Kazmi, wrote this on the British Medical Journal Blog to describe his visit to an already well-staffed community center:

As a doctor I felt slightly redundant. The centres were very well staffed as so many doctors and nurses had volunteered. I sat down on the floor and played with some children. I didn’t use my stethoscope those hours I was at the centre, but I still feel I was a doctor. I think that sometimes empathy and witnessing someone’s grief are as important a part of our role as procedures or prescribing.

He also noted:

.  .  .  A group of young black Muslim boys, who were fasting themselves, walked around with jumbo pizzas offering everyone slices. A group of ladies arrived to offer face painting for the children.  .  .  It was striking how all of the usual prejudices or divisions, which so frequently surface, were all suspended. People from all walks of life were empathetic and loving to each other. For a period at least people stopped being black, white, Muslim etc and were just “human.” If this type of unity is possible in times of tragedy, I think it is realistic to aim for it all the time.

Sometimes presence and connection is the best, or even the only, healing.  And part of partnering is developing the ability to sense the needs of the other, and find a way to help meet them.  It is also not just about the individual “patient” but of the whole community and environment.  Thank you Dr. Kazmi.




Research Tends to Confirm The Importance of Patient Engagement For Patients To Be “Superagers”

The New York Times has an interesting article reporting research on the importance of engagement in helping people be “superagers.”  While I am not sure I like the phrase, with all its competitive implications, nonetheless the research is useful for those working to keep patients engaged not only with their own health situation, but also with institution and system improvement.

Specifically, the writer, Lisa Feldman Barrett, describes her imaging research into those with highest cognitive functioning in old age.

Our lab used functional magnetic resonance imaging to scan and compare the brains of 17 superagers with those of other people of similar age. We succeeded in identifying a set of brain regions that distinguished the two groups. These regions were thinner for regular agers, a result of age-related atrophy, but in superagers they were indistinguishable from those of young adults, seemingly untouched by the ravages of time.

What are these crucial brain regions? If you asked most scientists to guess, they might nominate regions that are thought of as “cognitive” or dedicated to thinking, such as the lateral prefrontal cortex. However, that’s not what we found. Nearly all the action was in “emotional” regions, such as the midcingulate cortex and the anterior insula.

My lab was not surprised by this discovery, because we’ve seen modern neuroscience debunk the notion that there is a distinction between “cognitive” and “emotional” brain regions.

But the most interesting part of the analysis is prescriptive:

Of course, the big question is: How do you become a superager? Which activities, if any, will increase your chances of remaining mentally sharp into old age? We’re still studying this question, but our best answer at the moment is: work hard at something. Many labs have observed that these critical brain regions increase in activity when people perform difficult tasks, whether the effort is physical or mental. You can therefore help keep these regions thick and healthy through vigorous exercise and bouts of strenuous mental effort. My father-in-law, for example, swims every day and plays tournament bridge.

The road to superaging is difficult, though, because these brain regions have another intriguing property: When they increase in activity, you tend to feel pretty bad — tired, stymied, frustrated. Think about the last time you grappled with a math problem or pushed yourself to your physical limits. Hard work makes you feel bad in the moment

One way of looking a this from a patient partnering point of view is that really engaging to improve the institution or the system can make you feel “tired, stymied, frustrated.”  But it is worth it in terms of maintaining capacity.  (The article makes clear that really vigorous exercise is also helpful, a lesson I am less willing to internalize — maybe extra blog writing will compensate for lack of exercise, I certainly prefer it!)

But the author is explicit:  “This means that pleasant puzzles like Sudoku are not enough to provide the benefits of superaging. Neither are the popular diversions of various “brain game” websites.

The article also links to a paper here, which, quoting the abstract, explains that:

Reviewing converging evidence from cybernetics, animal research, cognitive neuroscience, and social and personality psychology, we suggest that cognitive control is initiated when goal conflicts evoke phasic changes to emotional primitives that both focus attention on the presence of goal conflicts and energize conflict resolution to support goal-directed behavior. Critically, we propose that emotion is not an inert byproduct of conflict but is instrumental in recruiting control.

So, the complexities of true engagement would appear to be very good for the patient — and probably also for the professional care team.  Disagreement in the patient and professionals team is not a bad thing — unless it is not resolved in a positive and helpful way that includes improvement.

The Great Research News About Impact of An Hallucinogen on Cancer Patient Depression and Anxiety Raises a Side Question About Extent of the Problem and the Diagnostic Process

I suspect that the Internet is already abuzz about the study about high impact of careful single intervention use of Psilocybin on cancer patients suffering anxiety and depression (New York Times Report).

Psilocybin has been illegal in the United States for more than 40 years. But Mr. Mihai, who had just finished treatment for Stage 3 Hodgkin’s lymphoma, was participating in a study looking at whether the drug can reduce anxiety and depression in cancer patients. Throughout that eight-hour session, a psychiatrist and a social worker from NYU Langone Medical Center stayed by his side.

Published Thursday, the results from that study, and a similar small, controlled trial, were striking. About 80 percent of cancer patients showed clinically significant reductions in both psychological disorders, a response sustained some seven months after the single dose. Side effects were minimal.

But what surprises me from the article is the statement that:

Cancer-related psychological distress, which afflicts up to 40 percent of patients, can be resistant to conventional therapy. Mr. Mihai’s anxiety began when doctors finally told him he was in remission.

I went and looked at the abstract of the study linked to, and the relevant language is:

Interview-defined depression and anxiety is less common in patients with cancer than previously thought, although some combination of mood disorders occurs in 30-40% of patients in hospital settings without a significant difference between palliative-care and non-palliative-care settings.

The meta study used DSM or ICD criteria.

Frankly, as a long term patient who spends a lot of time in oncology waiting rooms, I find this low number impossible to believe, or rather it makes me deeply skeptical of the diagnostic process and criteria, at least as applied.

DSM criteria are described in general as follows:

Depressive disorders include disruptive mood dysregulation disorder, major depressive disorder (including major depressive episode), persistent depressive disorder (dysthymia), premenstrual dysphoric disorder, substance/medication-induced depressive disorder, depressive disorder due to another medical condition, other specified depressive disorder, and unspecified depressive disorder. Unlike in DSM-IV, this chapter “Depressive Disorders” has been separated from the previous chapter “Bipolar and Related Disorders.” The common feature of all of these disorders is the presence of sad, empty, or irritable mood, accompanied by somatic and cognitive changes that significantly affect the individual’s capacity to function. What differs among them are issues of duration, timing, or presumed etiology. (Bold and underline added.)

So, I suppose the key is “significantly affect the individual’s capacity to function.”  It may be, for example that impact on “function[ing] of depression is almost impossible to tease out for cancer patients whose capacity to function is already so impaired.  (One might, I suppose, see what happens by trying to treat it, but you have to have the diagnosis first).  I know that personally having a psychiatrist expert in serious illness and end of life issues has been life changing, precisely because she can help me work out what is from the cancer, what is from my physical and emotional reaction to my cancer and what is from broader issues.

It could also be that clinicians supervising hard-to-take, and hard-to observe interventions underestimate the effect of those interventions on us, or else they could not keep going day after day.  (By the way, I Learned recently that at Hopkins the people who do bone marrow aspirations are “on” for that task maximum a day a week.  More than that is considered too much stress.  I love the attention to the needs of all.)

For anxiety DSM says:

Anxiety disorders include disorders that share features of excessive fear and anxiety and related behavioral disturbances. Fear is the emotional response to real or perceived imminent threat, whereas anxiety is anticipation of future threat. Obviously, these two states overlap, but they also differ, with fear more often associated with surges of autonomic arousal necessary for fight or flight, thoughts of immediate danger, and escape behaviors, and anxiety more often associated with muscle tension and vigilance in preparation for future danger and cautious or avoidant behaviors. (Bold and underline added.)

I suspect that it all too easy for clinicians, consciously or more likely unconsciously, to decide that the patient is suffering rational fear, rather than “irrational” anxiety.

The bottom line is that the overall circumstances of cancer are likely to make diagnosis according to these criteria difficult if not impossible.  It is just all to easy to get the number down to 30 to 40%, when really we should see anxiety disorders and depression as prevalent in our population.

In any event, I would urge careful thought to how these issues are looked at in patients, and ultimately not restrict proven treatments to those paralyzed by the emotional impact.

In the long term we might be thinking about specialized criteria and diagnostic processes for those with cancer diagnosis, and rather than dealing with issues of labeling consider thinking about whether treatment would be helpful. (Actually this may be happening anyway.  I wonder what percentage of cancer patients are already getting anxiety or depression medication.)

p.s.  Deeply personal note:  As a patient, I certainly suffer various forms of anxiety and depression (personal health status reports here).  As an advocate and blogger, I feel much less of both when I am engaged, writing, talking, and thinking about this.  I also note that the great thing about blogging is that it gets you online and researching (as hopefully shown by the above.)  I would have been talking about the hallucinogen study anyway , but now maybe I actually have something worth saying. I would certainly prescribe advocacy as part of any treatment, had I prescribing authority.