You Fill Up My Senses: A Magical Monterey Tribute to John Denver

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I was devastated when Henry John Deutschendorf, Jr crashed the experimental aircraft he was piloting and died in 1997. Better known as John Denver, his life and songs were deeply meaningful to me, for a range of reasons. How my wife picked out a place for us to stay that is so close to the place he died is eerily appropriate; looking out on the bay outside our window, I can almost imagine the day as if I were there.

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Annie’s Song

I first encountered John Denver when I discovered my parents’ collection of vinyl albums next to our old (even then) stereo. I still remember looking down at the smiling face of this Country Boy, who I recognized, even then, as someone like me.

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Listening to the music, I loved the upbeat music, but I loved the stories even more. Jumping on Grandma’s Feather Bed, driving home on Country Roads that Take Me Home, and standing in a field with Sunshine on My Shoulder” really did make me happy. They were images and stories a rural kid with long blond hair could envision and imagine meeting.

Reading down the list of songs, I was especially intrigued by one called Annie’s Song. Our family member, Annie, the dog-child my parents had before me, was in many ways my best friend. I identified this as her song. Listening to this music, my heart ached to hear how John describes Annie, filling up his senses, like “a night in the forest”, “a mountain in springtime”, or “walk in the rain”. All of these were vividly tangible memories of mine, evoking just those tingling feelings of the outdoors. It was magical.

As soon as the song ended, I would jump up from my place on the shag carpeting, carefully lift the arm of the stylus off the record groves, avoiding the horrible scrrenchhhh from a slip, and try to set it down oh-so-gently on the wider groove at the beginning of the song. It was magical.

Piano Man

Following my freshman year at Hononegah High, I was horrified when my parents announced we were moving to Springfield, Illinois right after the school year ended. I couldn’t imagine living anywhere other than Roscoe, IL, now best known as the hometown of the race car driver Danica Patrick. So we moved almost as soon as school ended, and my brother and I were stuck in our new house, on a dead-end street, with no friends and nothing to do much of the time.

I decided to reteach myself how to play the piano.

One of the first songs I taught myself was, of course, Annie’s Song. It reminded me of those days out in the fields across the street from our house at 8046 Harvest Hill, chasing butterflies with Annie. I made it through that summer, in large part, because I had John to help. I still feel a debt of gratitude to him for his assistance that summer.

Muppets!

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I love the muppets, another childhood. My favorites were Beaker, the unfortunate, exploding scientist; Animal, the insane, incomprehensible drummer; and Kermit the Frog. It only further endeared John to me that he was a regular guest of their show, and including the creation of a beloved Christmas TV Movie together. How can one not enjoy, especially during the holidays, his touching rendition of Have Yourself a Merry Little Christmas with Rowlf the Dog? Among all the guests of Jim Henning’s brilliant cast, John always seemed the most at home to me. How big a leap is it, from the flora and fauna of the outdoors he sang about to the animated animals of The Muppet Show?

Tributes — Life is for Living

I’m now in my 50th year on the planet. John Denver died in the plane crash at the age of 53. On the drive up from LA, we passed another memorial, to James Dean, who died in a car crash at the age of 24. My close friend and colleague Arti Hurria just died in a car accident at the age of 48, something my friend Supriya and are still coming to grips with. I’m reminded of just how tenuous our grip is on this world, how much we all need to appreciate the opportunity we have, and to use our time wisely, as all of these remarkable individuals did. It was nice to be reminded of this seeing the memorial to John, an acknowledgement of one of those people who had a profound impact on me, and reminding me of my colleague Arti, and to remain committed to those people and projects that mean the most to me.

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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!

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Balancing Hope with Prognosis – Lessons from Shawshank Redemption

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“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.

 

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Filed under Aging, Cancer, City of Hope, Decision Making, End of Life Care, Geriatric Oncology, Palliative Care, Risk, Uncategorized

Lincoln and Children on Remembering the Dead

Evening of Remembrance, City of Hope, March 28, 2018

(Gently edited talk delivered to the loved ones whose family members have died from cancer in the last year.)

Introduction

I’m here tonight, while officially on vacation — which may seem at first glance to be an odd way to spend my time away from work. Instead, I see it as absolutely appropriate to spend it with you, members of our City of Hope family. Like you, I have lost close members of my own family to cancer, including one just this past year, so I’d like spend a few moments of my life sharing my memories with you today. Not as a doctor, but as one of you.
I am reminded of my favorite President, Abraham Lincoln. Like me, he was a man who spent most of his formative years in the state of Illinois, in the state capital of Springfield. Nevertheless, his most memorable spoken words come from his few years outside of the land that proudly refers to itself as “The Land of Lincoln”.
In particular, I’m reminded of some of his words to commemorate the lives of those who died in battle in Gettysburg, Pennsylvania. In a similar way, we’ve all lost people who succumbed to their struggle against cancer.
Asked by David Wills, a lawyer in charge of planning activities, if he would give “a few appropriate remarks”, Lincoln gave his most iconic speech – in a mere 272 words, speaking for less than 3 mins.

This is always a reminder to me that much can be said is a few well-chosen words.

Ironically, within his speech, Lincoln told his greatest lie:

“The world will little note, nor long remember what we say here, 
but it can never forget what they did here.”

While we will never forget what Lincoln said, I hope you will forget what I say here tonight, but never forget what your loved one’s did in their lives. I their impact all around us, displayed proudly along the perimeter of this room.

Today is a day for us to reflect on our loved ones, those who didn’t get to see this day, and to remember those meaningful moments they brought into our lives. I have two members of life to reflect on tonight. I discuss them not to call attention to my own circumstances, but to join with you in reflecting on those we’ve lost.

 

Sharing My Experience

It has been almost 8 years since my father passed away from lung cancer. We had a relationship that was complicated, full of respect, but also including many differences of opinion that led to arguments – arguments that continued until the very end. At the time of his passing, I wrote about this, how challenging it can be for those caring for our loved ones when they are in pain, facing their final moments, struggling to be themselves:

“It’s been a couple of months since my father died. Sometimes I see him in my patients, especially the ones who seem defiant and defensive, those who are most skeptical of my care. Other times, I recognize his struggle in my cancer later in life older patients in my clinic who are dealing with the challenges brought on by cancer.”

“These days, I am more careful to tell my cancer patients and their families about the confusion and danger that may occur…And I’m more insistent about getting a [supportive care consultation for them. I try harder to prepare patients and their families for the possibility of a [dangers in the hospital] and how to avoid them. I tell patients’ families that no matter how exhausting, they should make every effort to spend time with a dying loved one to avoid regrets afterwards. I encourage them to involve grandchildren in the conversation about death and disease. I remind myself that few families are ‘ready’ for their loved one to die, even when given ample notice.”

In general, what I noticed at the time, in when caring for a dying person, it is much more difficult to be a son (or a daughter or a spouse or a parent or a sibling or a lover) than a doctor, when someone is gravely ill and suffering. I try to never forget it, and my heart goes out to you.

This last year, my wife’s sister-in-law passed away from an aggressive colon cancer – she was in her early 40s. She and my brother-in-law have small children, overlapping in age with our own. As she was getting sicker, she felt unable to talk with them, to share in the last moments of her life. She also felt unable to talk with us, which was confusing. Yet is reminded me, again, that every experience of life, including its end, is an individual you one. We have to treat each experience as unique, not a part of a statistical distribution.

In the book, “When Breath Becomes Air”, Paul Kalanathi, a young neurosurgeon dying from lung cancer, explains: “My relationship to statistics changed the moment I became one.”

And children are often our best source of truth. I still remember by one, my older son Xander, who was 7 at the time asking uncomfortable questions.

“Is Grandpa going to die?” he asked me one day.
“Yes, I’m afraid so.”
“Because he can’t breathe?”
“Yes.”
“Like when Harrison couldn’t breathe?”

Uncomfortable silence. Harrison, one of his younger twin brothers, recently had been hospitalized for a severe asthma attack. We had had to rush him to the hospital one night.

“No . . . it’s . . . different,” I stammered. “Harrison has asthma, which we are treating with medicine. Grandpa has cancer, and we don’t know how to treat it.”

Our three young boys understood the situation at various levels. We tried to be honest without scaring them. I was constantly impressed by their adaptability, their honesty and their straightforwardness in offering questions, thoughts and feelings. We could all learn from them.

“So, Dad, Grandpa is going to die.”
“Yes, that’s right. But not for a while.”
“Will we still come visit after that to play with Grandma?”
“Yes. Are you OK with that?”
“Well, Grandpa wasn’t very nice to us anyway.”

Unfortunately, despite his best efforts, that was true. My father was a smart, hard-working, dedicated man who lived his life with serious intensity. But he wasn’t always “fun.”

 

Looking Back, Looking Forth

It is why we are so fortunate, at City of Hope’s Department of Supportive Care Medicine, to have Child Life services, experts in helping adults talk with children about cancer, about the process of having cancer. Our supportive care team is full of people who can help in so many ways. I am lucky to be the Chair of such a wonderful Department.

Returning to Lincoln, who summed up his famous address so aptly, focused on the survivors and looking ahead, a call to those among us who are left behind in the wake of a family member who has died. “It is for us the living, rather, to be dedicated here to the unfinished work which they who fought here have thus far so nobly advanced. It is rather for us to be here dedicated to the great task remaining before us — that from these honored dead we take increased devotion to that cause for which they gave the last full measure of devotion.”

It is perhaps appropriate that children are so often still asked to memorize these words for school. We can learn so much from our greatest President and our children.

And that’s how I’ve seen my role since then, to be devoted to the cause of helping bring meaning to people’s lives when they have cancer, to help their families, friends, loved ones and colleagues to cope with the losses, and to carry on the commitment to make everyone’s lives a little better.

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Filed under Aging, Books, Chicago, City of Hope, Civil War, End of Life Care, Lincoln, Palliative Care

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

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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 CenterSM – 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.

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Filed under City of Hope, Decision Making, Geriatric Oncology, Geriatrics, Health Policy, Palliative Care

Paying It Forward

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Earlier this week, I lost my University ID card (actually, two of them, for the University and the Hospital, clipped together) , which basically contains all my access on-campus. Pondering the pain of replacing them, I received a message via FB Messenger from someone I’d never met who’d found it in a parking lot. We arranged, via FB, for my wife to meet this angelic person at her work, and I got my ID back in less than 24 hours. And oh, by the way, Tamra Dale walked a mile through freezing temperatures to retrieve the ID for me.

So, feeling extra lucky, I go to my eye appointment. And I find someone’s open billfold at  the local establishment, clearly unintentionally left behind. I pick it up and give it to the ladies working at the optometry office, they identify the owner and call her, she comes to the office to get it.  As I happily sit anonymously enjoying her delight, the ladies say, “Don’t thank us — thank the doctor here who found it.” And she delightedly turns to me and says, “Thank you, doctor.”

Just a shout out to a momentarily orderly world, with kind and thoughtful people, using technology invented by other smart people, and working voluntarily together to make life a little better for each other, for no other reason than a shared sense of humanity.

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