Looking back, Looking Ahead – how’d I do this year?

Feedback

One aspect of changing one’s habits is getting honest feedback.  This includes self-assessment.  Yet honest self-assessment is maddeningly difficult to achieve – most people never achieve it and remain trapped in an endlessly repeating cycle of unbreakable habits.  Watching so-called pundits online or on TV, one is left with the impression that volume of predictions, most of which are clearly erroneous, rather than accuracy of them, is the metric of merit.  Without feedback that matters, the cycle continues unabated.  Yet, the research suggests one of the principles of behavior change is receiving feedback, with two characteristics: that it be immediate and that the consequences of the behavior be clear and direct.  This feedback helps tip the “equilibrium” for change that Nobelist Kahneman recommends.

Positives and Negatives

Last year, I committed to two improvements, one “positive” and one “negative”. The broad goal was to increase of influence in the world, to make a more positive impression on people.  It is now time to decide how I’ve done with my goals – how did I do?

The positive goal was to “write more creatively”.   This has been a partial success, I would say.  One of the primary sources of my writing is this blog.  With the publication of this entry, I will have written more blogs than I did last year.  Even better, I’ve been a little more influential, at least by the number of views the blog has received – I crossed the 1,000 view threshold this year after 6 years of blogging!  Perhaps even more significantly, I’ve been co-authoring a book with my colleague Linda Waite from the University of Chicago.  It remains unpublished, but I’ve been working intermittently with an editor for a couple of years now.

The “negative” one was to be less passive – or more active – in my interactions with others.  My tendency is to react to others, to be a verbal or narrative counter-puncher or volley-er, rather than an instigator.  I’ve done better in this, too, reaching out and pursuing my own agenda rather than reacting to others.  The most concrete example of this is the initiation of a number of new endeavors at work – our Integrated Care Service, our new community-based primary supportive care training program, and our new NIH grant on creating infrastructure for geriatric oncology.  My wife Tamra and I invested in a movie, The Elephant in the Room, and we’re now listed in IMDB as “executive producers”, another example of pro-active activity.

What’s next?            

 So what’s on the list for this year?  What should my goals be?  In an effort to crowd-source this one, I want to pick one from each of the lists below.  I would appreciate anyone who is willing to help me select, especially those of you who know me best.

Positive –

1. Be positive with others – encourage rather than critique.
2. Assume that motivations from others are good/positive rather than bad/negative.

Negative –

1. Stop reacting immediately to perceived slights or annoyances.
2. Procrastinate less, even when I don’t feel like doing something right away.

Let me know what you think of these options!

Balancing Hope with Prognosis – Lessons from Shawshank Redemption

“Hope is a dangerous thing, Andy.”

“Red, hope is a good thing. Maybe even the best of things, and good things never die.”

These quotes from the Shawshank Redemption, spoken by the characters of Ellis Boyd Redding (“Red”) and Andy Dufresne capture the two-sided, Janus-like face of hope.  Is it a “dangerous thing”, as Red suggests?  Something that raises expectations, only to dash them aside.  Or is it a good thing, as Andy counters, something that helps lift the spirit in the face of adversity?

I’m a geriatrician and a palliative medicine physician who cares for cancer patients – most of my patients have a limited prognosis, for one reason or another.  I’m fundamentally interested as a scholar in medical decision making – assisting patients in making the best possible decisions in face of the uncertainties of their situation.  Uncertainty is a key element in life and medicine, particularly life with a cancer diagnosis, and by giving a more definite prognosis, we actually seem to give our patients less uncertainty, to put a finite limit to their lives, and in doing so, we take away their sense of hope.

All of which bring to up for me the fundamental question – hope for what?   A longer life?  Or a better life?  And, how do we, as physicians, communicate both an accurate sense of prognosis with an appropriate sense of hope about the future?

I recently cared for two separate patients, both men in their mid-90s.  Both were fully functional prior to their cancer diagnosis.  Both relied on their children to help make their primary decisions.  And both were very clear about their hopes:  one wanted to pursue every possible option to stay alive; the other wanted to pursue quality of life and didn’t want to live a moment longer once that was compromised.  I did my best to help both pursue their hopes.  Both lived and died by their own lights.

Prognosis

One of my favorite lines to use with patients when discussing prognosis is, “Let’s hope for the best, but plan for the worst.” This sets the tone for the conversation we need to have, and it is balances hope with prognosis in a way that established a therapeutic alliance.  First, it shows I’m on the side of the patient, wanting the very best for them – I’m hoping for them to have a great outcome.  Second, it sets a proactive approach to planning for contingencies, for the possibility of bad things happening.  In fact, this is an approach to decision-making for managing uncertainty promoted by Gretchen Swarze calls, “Best Case/Worst Care”.  It injects some narrative into the numbers behind high-stakes decisions for patients by helping patients imagine what might be “best” and what might be “worst” for them when choosing options for further management.

 

New Year, New Decisions

Studying Choices and Making Choices

I love studying decision making.  But it tends to inhibit my own ability to choose — as if making my own decisions should be perfect, knowing what I do about all the ways to make mistakes.  This year, has tested my willingness to trust my own decision-making processes.  It was high time for me to put my own “skin in the game” and live according to some consequential choices.  Unlike the “experts” on TV, who rarely review their prior predictions, yet blithely offer more  for the coming year, I prefer to start each new year by rethinking the prior one.

Since I am a decision scientist at heart, I don’t make resolutions at the start of a New Year.  Instead, I choose 1 or 2 goals to embrace and 1 or 2 bad habits to drop.  Last year, I had two positive goals — to be better about priority setting and to smile more.  Similarly, I had two negatives to eliminate —  to avoid having frustration with people boil over into anger and to waste less time watching  sports, especially the NFL.  Both major commitments, to set priorities and avoid anger — contributed to the major decision to uproot my family and take a new job across the country. My increasing frustration with work led to less anger and more reflection on why I was angry. This led to a recognition that I needed to change my work situation. Not necessarily to leave my position at the University of Chicago, but to make clearer my priorities to people — honestly and not angrily.

Choices from 2017

This has been an amazing and surprising year, and this last day of 2017 is no exception, as I have another hour to wait for midnight to arrive. Despite a nearly lifelong desire to live in Southern California — ever since being a 16 yo lifeguard listening to the Beach Boys in rural Illinois — I had assumed I would never leave the Midwest. Yet, here I am, still waiting almost two more hours to ring in the new year, after a spending the day in 70 degree weather Pasadena, California!

This led to exploration of my options, including the one here at City of Hope. With the support of my wife Tamra, and the willingness of my boys Xander, Harrison and Austin, I decided it was time for a major change. They’ve all been fantastically supportive, even when we lived apart for the first 3 months of the transition.

It was a great decision for me — no regrets. Yes, I do still miss many of my Chicago colleagues, but not the weather. My new home office, a stand-alone structure on our new property, with a beautiful view out to the San Gabriel Mountains, is something I thought I’d get when I retired. The commute is easier, and I’ve learned so much new about a lovely part of our country. The boys have adjusted heroically to their new school situation, especially Xander, who has embraced high school and the challenges of adolescence with a maturity I didn’t know he had.  Seeing him do this reminded me of the difficulties I had moving a much shorter distance as a similar time in my life.  It is delightful seeing him handle it much better than I did.

Choices for 2018 

It’s time for setting some goals for this year, a positive one, for a new capacity to realize, and a negative one, to drop (or at least minimize), to create room for growth.  My positive one is to wright creatively more often, to express myself through words more freely, honestly, and boldly.  The people I admire most, with the possible exception of my patients suffering with advanced cancer nearing the end of their lives, are writers.  It is why I treasure my library and buy old books — to remind me of the treasures of the past. But it intimidates me to try to do this myself. But as I close in on 50, it is high time for me to embrace my own muse.  My negative goal is to reach out more to others, to be less passive about my relationships.  Rather than wait for others to connect, to seek connections myself.  Both of these are rooted in my commitment to make better choices, to live that which I so often study.

William Dale

Dec 31, 2017

Becoming The Standard of Supportive Care

August 2, 2017

 Meet William Dale, M.D., Ph.D., the New Arthur M. Coppola Family Chair in Supportive Care Medicine

William Dale, M.D., Ph.D., recently joined City of Hope from the University of Chicago, where he was an associate professor of medicine and section chief of Geriatrics and Palliative Medicine. He completed his medical and graduate school education at the University of Chicago, and his residency in internal medicine and geriatrics fellowship at the University of Pittsburgh. He is a board-certified geriatrician and palliative medicine physician with a doctorate in health policy.

Q: What brought you to City of Hope?

I knew of City of Hope primarily through my association with long-time colleague (Vice Provost) Dr. Arti Hurria. We both have keen interests in geriatric oncology. I also knew of the well-respected Department of Supportive Care Medicine here, which is a rather unique model that doesn’t exist elsewhere. Here, the department brings together so many aspects of comprehensive cancer care under one umbrella: palliative care, social work, psychology, psychiatry, patient education, patient navigation, volunteer services, and the Positive Image Center^SM – 13 divisions in all. It is very rare to have so many disciplines working closely together under one roof. Most places have to pull together multiple providers from several different places, but it makes perfect sense to keep the patient at the center of your care and to know they have a team around them. We do that.

Q: Many think that “supportive care” and “palliative care” are interchangeable terms. Are they?

Palliative care is a holistic specialty that focuses on maintaining a patient’s quality of life and managing their symptoms. Its focus is on maintaining a high quality of life throughout the cancer care journey, including when therapies aren’t available to control the cancer and the patient is nearing the end of life. Hospice care – caring for patients in the last six months of life – is often confused with palliative care. While hospice care is part of excellent palliative care, they are not the same. Supportive care is a broad-based patient care approach, while palliative care is a medical specialty that focuses on preserving quality of life.  Our department is inclusive.

Q: Tell me about your role as chair. What would you like to accomplish?

I envision supportive care at City of Hope being the top program in the world. We already have a unique world-class clinical program. What we haven’t had enough of is scholarship in supportive care, which we are building. I want to bring researchers here, which we’ve already started by recruiting a senior-level director of research we’ll be announcing soon. Also, we’ll have a new concentration on geriatric medicine – the care of older adults. Finally, I have a great interest in models of cancer care. Creating programs for optimally caring for vulnerable patients on a financial foundation of personalized care, integrating oncology and supportive care that is sustainable.

I want City of Hope to be THE place, the standard for supportive care programs.

I want City of Hope to be THE place, the standard for supportive care programs.

Q: How did you come to choose a specialty in geriatric palliative medicine?

I’ve always liked older people! I remember caring for them when I was in an intern in internal medicine – when my colleagues avoided the complex older patients with multiple problems, I liked the challenge these patients presented. In my VA clinic in Pittsburgh, I loved hearing fascinating stories from the old World War II vets. Older people can have quite a few health problems already: They may have several diseases – hypertension, cardiovascular issues, diabetes – and then you add cancer on top of that – it’s a lot to deal with. There are unique challenges and considerations when taking care of this age group.

Q: How do you expect to be involved in research in your new role?

I have always been interested in medical decision making and health services research, which we will build at here. Much of the data we currently have from cancer treatment trials comes from a younger, healthier set of patients. While there are a few older patients enrolled, they are largely healthier patients who don’t represent the majority with cancer. So we often don’t know how a less fit older patient will respond to most therapies – we just have to guess, often causing lots of side effects. We need research that will allow us to make more informed decisions for our older patients, based on better data, and to using interventions and a system of care tailored for them. If we can target interventions that get results that truly improve their functioning and quality of life, then they aren’t in the hospital as often. The older, sicker patients are the ones who currently use the most resources, and tend to be the most expensive – for them, us and society. How can we better care for them? Often, supportive care interventions are the answer.

Q: Is there research you are leading now related to this?

Arti (Hurria) and I are continuing to collaborate on several studies, including a recently submitted National Institutes of Health grant that would build a nationwide research infrastructure for older patients, which also includes my City of Hope colleagues in supportive care (Executive Director Matthew Loscalzo, L.C.S.W., the Lilliane Elkins Endowed Professor in Supportive Care Programs), nursing (Nursing Research Director Betty Ferrell, Ph.D., R.N.), and aging science (Population Sciences Professor Mark LaBarge, Ph.D.). We want to get better, more representative data for these patients who have the highest burden of cancer and other diseases, as well as mentor young researchers to enter the field. Along with the new Center for Cancer and Aging here, which Arti, Mark and I lead, we want City of Hope to be the national leader in this type of research. They can come to City of Hope, and we would have some national level resources we can give them access to.

Q: Did you always want to be a doctor?

As a kid growing up in rural Illinois, with animals always around both inside and outside the house, I wanted to be a veterinarian. But, I’m ultimately a people person, and I wanted to make a difference in people’s lives, so I became a doctor. I’m also a bit of a policy wonk about health care, so I earned a Ph.D. in health policy. Melding my clinical love of older adults with my research love for medical decision making and health services, I look forward to building a department that brings this together.

Q: How are you liking LA so far?

Although I’ve spent my entire adult life in the Midwest, almost entirely in Illinois, I am loving Southern California! My very first job as a 16-year-old in Illinois was as a lifeguard. I loved being at the pool all summer, and spent seven years doing that. During that time, my favorite bands were The Beach Boys and The Eagles, and I fantasized about living in LA!  When this job came open at City of Hope, it was a dream come true from my youth.

Guest Blog: The Importance of Voting

By Xander Dale (13)

Every year, many students like you turn 18 and cast their vote, fulfilling the most basic act in our American society.  After casting your vote, your ballot will then be sent through a long and thorough process, but here is the real question – does your vote really count?

Only 45% of Americans vote, in the final tally.  What can we do to fix that?

I think a big reason the voting turnout isn’t as great as it could be is because many citizens feel that their vote is just a grain of sand on a gigantic beach, and their vote will not sway the election at all.  However, those grains of said will add up in the end.  For example, in the recent election, each candidate had a very similar number of votes, and if we had just had another couple of hundred people vote, the election could have ended differently.  A few times, a single vote or a few votes could have changed America – for example, Texas might not have become a state if one U.S. Senator had voted differently.  If only a few people had voted differently in 1960, Richard Nixon would have become president rather than John F. Kennedy.

Another likely reason American citizens decide not to vote is because registering to vote is relatively difficult here compared to other countries.  For example, a few other countries have their citizens automatically registered to vote, and I think that would be much more effective, even though it would be more work for the government.

To try to effectively increase the American voting turnout, I think there are few changes that could/should be made.  I think that some sort of “Universal Voting registration” would change the number of people voting by a large amount – a sort of “out-out” rather than an “out-in” system.  I think that the problem of voters feeling that their vote won’t matter can’t change with only 1 action, but changing other things can help.  For example, maybe the electoral colleges should be filled more proportionately, instead of all the Electoral College votes going toward the winning candidate, we could create a ratio of Electoral College votes to popular votes, in order to make the popular votes more appealing.

In conclusion, our voting process is flawed in a few ways, and there are a few ways to fix our voting issues.  These include making voting “opt-out” rather than “opt-in” system or changing the proportionality of the Electoral College.

 

A Doctor’s “Creed” – A Medical Review

“I’ll fight, if you fight.”  Adonis Creed, to Rocky Balboa.

“First, do no harm.”  Hippocrates.

————————-

History of the Present Movie

The newest addition to the “Rocky” franchise, Creed, has gathered critical commendation as the best entry in years.  Like many of my generation, I was a convert to the original Rocky (1977), rooting for the workingman’s underdog from Philly against the Hollywood champ, Apollo Creed.  I delighted in the moral victory earned for completing the fight, despite the official loss on the judge’s score cards.  I absorbed all the iconic scenes: running up the courthouse stairs, chasing a chicken around the yard, and punching the slabs of beef.    Like many, I followed Rocky Balboa’s transformation over the years, holding my nose at his transformation into a cultural icon and buffoon-like superhero.  Even as future medical student, the horrific violence that was at the center of the storyline never troubled me.

It was with some trepidation, then, that I let my 12-year old son talk me into seeing this newest entry.  It was his preference over that other movie-saga of my youth, Star Wars.  But I had heard good reviews, including from a social worker colleague and an overheard locker-room comment that Stallone was a candidate for an Oscar for his role, a nomination which would be his first since Rocky.  The nuanced updating of Rocky as a mentor to Apollo’s kid promised a breath of fresh air into the storyline.  “Fine,” I thought, I’ll give it a try.”

 Review of Symptoms (No Spoilers)

The critics are right – it is the best Rocky movie since the original.  It is an inspiring story on two related fronts: the importance of pursuing your own vision while owning one’s past.  These themes play out in both main characters, Adonis and Rocky.  Over the course of the movie, each avoids owning their past, leading to difficulties in dealing with the present.  Conflicts arise, especially between the two, as the past threatens the future. As the climactic fight sequence arrives, both slowly own their past, and that emotional catharsis clears the field for moving into the future.  While predictable, the understated dialogue and tough-love demeanor make it work.  And then the overstated punches get thrown.

The director faces a similar challenge, trying to advance the new themes, while echoing the past,without descending into a cheesy reproduction.   The allusions to the private Rocky vs Apollo “third fight” that freeze-frames to end the second film is a nice touch – didn’t you really want to know who won the deciding match?   An appearance of the actual Rocky Balboa statue, with photographing tourists, is a perfect touch.  The re-ascent of the Courthouse stairs is imagined with a deft nostalgic touch.   Overall, the call-backs work, fitting smoothly into the narrative flow.

One bit of nostalgia doesn’t quite fit: I’m not sure Stallone’s performance is Oscar-worthy.  His genuine skill as an actor shakes off decades of shlock, a surprising butterfly, perhaps with crippled wings, emerging from its shell.  His understated charm works as an older man passing on the torch of fame.  One roots for the character and the actor to pull it off, and it really happens.  The buzz for awards is a consequence from the low expectations he’s set over the years.  But ultimately, this is Stallone as Rocky, a near-enough match to credit too much to acting brilliance.  It’s a ultimately a bit sad to see Stallone, the genuine actor, whose been lost over the years to the action-hero automaton.

 Medical Decision Making (Spoiler Alert)

My biggest problem with the movie was from a medical perspective.  A number of issues distracted me from the storyline, and they stemmed from the lousy doctoring, bad medicine, and questionable morality.

1. First, Do No Harm — Cancer is featured as a significant part of the storyline. After a sparring session in which Rocky ends by vomiting and passing out, he is hospitalized. Following a hospitalization, he returns to the doctor’s office to find out he has non-Hodgkin’s lymphoma, a type of cancer of lymph nodes.  He is told by the doctor that he needs surgery and chemotherapy.  He refuses to consider treatment, saying that he saw his wife Adrian go through that, and “it didn’t go so well.”  He asks the flabbergasted doctor to keep this private.  She apparently agrees to do so, but gives him some pamphlets to read.  He sticks them in his pocket and heads out.  Most of the scene plays out with both parties standing up, rather than sitting for a heart-to-heart conversation.

• So many things bothered me about this scene: the doctor’s paternalistic approach to the care, the blunt delivering of a life-threatening diagnosis, and the heavy-handed insistence on treatment without further discussion.  What about shared decision making?  What about asking about the patient’s experience?   When the patient says he had a prior “bad experience” with his wife, aren’t you going to explore this?  I was applauding internally when Rocky walked out the door, until I realized HE was supposed to the one acting inappropriately.
• Ok, I admit that it’s a movie, that nobody wants to observe a 15 minute shared-decision-making conversation, and the plot needs to move along.  I also understand that doctor’s sometimes, perhaps often, act in this heavy-handed way, as Amy Berman has so eloquently taught us.  But I was appalled to see this portrayed so clumsily in a movie for mass consumption.  It feeds into the perception that cancer is a death-sentence, that heavy-doses of chemotherapy is the only way to cure the disease, and anyone thinking otherwise is misguided as best and foolish at worst.  This is a dangerous perception, with each element of the above containing falsehoods.

2. The “War against Cancer” – A primary storyline for the movie is that Rocky’s legendary hardheadedness is at fault for his decision-making about cancer – that he is “giving up” by refusing to undergo chemotherapy. Adonis threatens not to fight in the championship bout unless Rocky “fights” against his cancer – i.e. he chooses to get accept chemo. Stemming back to the “War on Cancer”, we have continued to propagate the imagery of “fighting” or “battling” against an enemy, with the image of “giving up” or “quitting” on the other side of the ledger.  Given an opportunity to use Rocky’s cancer diagnosis as a metaphor for wisdom, understanding, and communication, the film falls into the same cultural trap of a war.

2. Head trauma – Who can forget Rocky, in the midst of being pummeled by Apollo, his eyes swollen shut, telling his trainer to “cut me, Micky” – to cut his eyelids so he can see? The dramatic scene is a consequence of all the head trauma from the fight. One of the themes of Creed is that Apollo DIED from being punched in the head, which is why Adonis’s step-mother won’t let him fight.  One of the least believable parts of the movie, frankly, is that Rocky has lived long enough to get cancer, rather than suffering from Traumatic Brain Injury from repeated concussions.

• The film doesn’t shy away from illustrating the damage occurring.  In the final dramatic scene, Adonis is knocked cold, blood flying, (with significant screaming from a woman in our theater) – only to literally spring up from the mat to finish the fight.  With his formerly anti-violence step-mother at home cheering him on, he finishes the fight, eyes swollen shut and massive bruising on his face (and presumably to his brain).  It was difficult to walk out of the theater, directly past the marquee for the movie Concussion, and not reflect on the glorification of head trauma we had just witnessed.

Thankfully, after the movie, I asked my son what he thought about boxing, and he said, “I’ll stick with gymnastics.”

Everest: A Movie Micro-Review

To my wife’s chagrin, I love the book Into Thin Air by Jon Krakauer, the first-person account of the 1996 disaster on Mt. Everest. It’s gripping, terrifying, and heartbreaking, highlighting the difficulty of decision-making in lifeboats — even when those lifeboats of one’s own creation.

The movie is a faithful rendering of the tragedy, plucking away madly at the heartstrings as people freeze to death while talking to loved ones on the phone. It succeeds in telling the two most compelling stories, about Rob Hall and Beck Wethers. It modestly fails in showing the reasons for the tragedy — primarily people’s desire’s to achieve a goal overcoming their rational capacity to recognize when that goal is no longer achievable.

It is a near-great movie, better for those who have read the excellent book than for those seeing it without that benefit. Recommend for those who have read the book, wait for home rental or streaming on a nice screen for those who have not.

Side note: My 12-year old found it “boring”, except for the parts where people fell off the mountainside, which were not “dramatic enough” for him.

Side-side note: Krakauer, the author of Into Thin Air, didn’t like the movie, in which he’s a character. He has a small role in the movie, and some of the worse criticisms are reserved by the director his character.

Robin Williams, Jimmy Wales, and Holes in the Universe

Many years ago, during my first stint living in the Windy City, Jimmy Wales of Wikipedia fame lived with us.  During that time, he told us a funny story.  He was in a park in a major city, I believe it was Central Park, but I can’t be certain.  He saw an aggressive mime bothering someone in the way mimes do, although this one seemed even more active and annoying than usual.  Suddenly, the man serving as the “audience” for the mime just slugged the mime, knocking him down.  I laughed – haven’t we all wanted to do this at some point in our lives?

This would have just been a cute story, except that Jimmy related seeing Williams on a talk show many years later – TELLING THE SAME STORY!  Only in that version, Williams was the mime being slugged.  I was laughing hysterically now, imaging my favorite comedian, being punched by some stranger who never knew his brush with fame.

All these many years later, I’m as stunned as everyone else at Mr. Williams’ death from suicide. Even as a physician who cares for many patients with depression, knowing the dangers it brings, I feel as sucker-punched as Williams-as-mime must have.

I vividly remember the first time I saw Williams on TV – in his role as Mork from Ork on my favorite childhood show, Happy Days.  His appearance on that family sit-com, in justice, should have been the “jump-the-shark” moment for the original “jump-the-shark” moment.  We would be calling such derailments of successful shows that have over-run their course the “alien-from-Ork” moments, I believe – except that Williams was just so damn funny.

I heard that, during the try-outs for the part of Mork, each applicant was asked to sit like an alien.  Williams spontaneously chose his now-famous head-down/ass-up posture, which nearly won him the role by itself.

There is nobody I can think of who filled my life with laughter as much as Robin Williams.  I watched Mork and Mindy religiously.  Even as a kid, I would stay up late, after begging my parents, to see him on the Tonight Show with Johnny Carson.  I watched every one of the charity specials that he co-hosted with Billy Crystal and Whoopie Goldberg.  I have seen virtually all of his movies, especially the comedies. I love to laugh, and nobody made me laugh more than he did.  The manic craziness, combined with the abstract flight-of-ideas, and the obvious delight in response of an audience – any audience – was infectious beyond belief.  There is just nothing like it.

I have read that one of the “reasons”, if such can be adduced after someone suffering from depression kills themselves, that he committed suicide was a recent diagnosis of Parkinson’s Disease. Since I treat many people with this disease, I wanted to comment that I hope that’s not true.  Many people with PD have a wonderful quality-of-life with the diagnosis, receiving treatments for it.  But I can’t help but wonder if, after playing the role of neurologist Oliver Sacks in the movie Awakenings, Robin was reminded of the unfortunate outcomes from that initial episode of using carbidopa/levodopa to treat a variant of PD.  But it is haunting to watch that film and not wonder a bit.

Now that Mr. Williams has written the final chapter of his life, he has left a hole in the universe, it seems.  His life, as much as anyone’s, was a singularity – and like the outer space version of such, it has left a black hole behind.  I wonder at this feeling of loss, this presence-of-an-absence, that some people leave behind.  It’s the converse of the bright flare of joy such people bring to our lives, and I’m going to try and le that shine on in my memory, as much as possible.  He really was the funniest person I’ve ever seen, and I see in my mind’s eye, him being punched for being TOO good a mime, with an astonished Jimmy Wales looking on, heading out to change the world in another way.  And you can read all about one due to the vision of the other.

Trust and Behavior – Personal, Professional, and Political

Personal

My wife and I are placing significant trust in two young people we’ve never met before tonight.  We’re going to dinner together and leaving our boys — ages 11, 8, and 8 — with two strangers we’ve only met on the phone.  We’re even doing so in a place we’ve never been before.  Hopefully, we won’t be arrested for parental negligence, like a Florida mom was for allowing her 7 year old to walk to the park.

In addition to the trust we’re placing in these two young women strangers, we’re placing a significant amount of trust in our young boys, especially our eldest son.  He’s a smart 11 year old kid, with reasonable judgment, generally cautious, but with bouts of immaturity. We’ve gone through contingencies, he has a phone to contact us, and he wants to be more “grown up”.  He’s done well given appropriate leeway in the past.  Unfortunately, as Nicholas Nassim Taleb and others point out, successful past performance isn’t always a reliable guide to future success – a problem when large consequences are at stake. Our 8 year-old twins are rambunctious boys, one is very risk-averse and the other is risk-seeking; both are argumentative.  All of this was relayed to the babysitters.  They seemed perplexed that we were telling them all of this – apparently recognizing the extreme risk-aversion in the parents as more important than that of the kids.

The paradox of trust is that it involves a judgment of people in the face of insufficient evidence and lots of uncertainty.  Human beings make choices, and past action in similar circumstances is no guarantee of similar future action.  Even more difficult is predicting how people will behave in brand new circumstances. Trust when applied to human beings requires a judgement about character – that their virtues/values will guide their actions in a consistent, life-affirming way.  But there is no guarantee.  And mistakes are brutal in their consequences.  And yet, the greatest rewards flow to those who take the biggest risks.  As someone who studies decision making in a medical context, I’m hyper-aware of all of these issues.

Professional

I spend much of my professional life as a physician counseling people on risk.  As a physician caring for older patients with cancer, I’m constantly trying to provide my best advice for patient to balance the risks of having cancer with the risks of being treated for cancer.  One of my personal practice patterns is not only to tell patients and families what I think they should do, but to explain at some length WHY I suggest this.  Most appreciate knowing this additional information, although some find it overwhelming and confusing.

Over time, many of my patients have come to trust my judgment, even to the point of insisting that other doctors contact me before they allow a procedure or a treatment to take place.  I believe this trust comes from three sources: my willingness to explain the uncertain trade-offs they face, my constant reassurance that their quality of life is my highest goal, and my willingness to support whatever decision they ultimately make.  Also, my track-record is pretty good, in telling people what to expect, which tends to inspire trust.  The investment of extra time in clinic is worth the improved outcomes down the road.

Political  

I often marvel at the willingness of politicians to make definitive statements about uncertain events involving many people.  Having to act on issues that affect millions, or even billions, of people in the face of such uncertainty would be virtually impossible for most people, and certainly for me.  Yet we ask our presidents to do this on a nearly daily basis.  Today, I read in the news that we’ve decided to use military force, in the face of rising violence by terrorists, in the form of bombs, in Iraq.  Having supported our on-going troop withdrawl from that country, I’m unsure this is a good idea or not.  Hopefully, it will help the beleaguered people in the north of the country being brutally killed by the terrorists.  On the other hand, it might lead to escalation of violence in the country, increasing the overall violence in the area, to little effect.  Even worse, it appears to be a concession that our current policies in Iraq specifically, and the Middle East general, are failing.  I’m not sure whether this is a good thing to do, and I do not trust our government to choose wisely.  In the face of all this uncertainty, I truly don’t understand how to feel any trust.  As Ronald Reagan reminded us, when it comes to the politics of foreign policy, “Trust, but verify.”

Follow-up

Throughout the night, several people asked us, “What did you do with the kids? You didn’t leave them alone, did you?”  We received several text messages from the kids, including pictures of them having fun at the amusement park.  We had a fun, relaxing time, even seeing a celebrity from a favorite TV show, proving that Black Swan events aren’t always negative events.  We returned home from our event to find that the kids had a great time — and to our surprise, so did the sitters!   The kids spent many hours playing on the beach and riding rides, playing games, and eating ice cream.  The sitters had many delighted stories to tell. A win all around – we were right to trust the young ladies.  Professionally, my clinic continues to grow, enough that I need more time and space to see everyone we need to see.  Referrals continue to pour in.   Politically, unfortunately, I see no end to the problems, which continue to grow as we  drop some more bombs on Iraq.