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Thursday, November 8, 2007

Session 1: The Healing Professions/Medicine

Arthur Frank
University of Calgary

CHAIRMAN PELLEGRINO:  Good morning.  Welcome.   The first act of business is to recognize Dr.  Daniel Davis, the Executive Director of the Council, who is the official government representative at this meeting.  Dan, good to have you with us.  

This meeting will be dedicated to several subjects we've been dealing with over the last several meetings, and I'm hoping that each and every one of you on the Council will, as you make comments and any comments you want to add later, comment on the appropriateness of these subjects and whether we should or should not pursue them and in what way the Council can make a contribution to these subjects as well.

And without further ado, I will do as we generally do, begin without a formal introduction.  For the members of the Council, the background of our first speaker, Arthur Frank, is in the agenda book and I will identify him as from the University of Calgary.  He and I have had a meeting some years ago.  We were trying to reconstruct when it was.  His memory is better than mine, but neither of us could recall that.  But I'm sure, since I wasn't talking, he probably had a good time.

Dr.  Frank is going to take up the question of the healing professions, medicine, being a paradigm case, but certainly not the only one of the healing professions.  And we invite him to make his presentation, following which we will have a member of the Council open the discussion.

Dr.  Frank, you may use the podium if you wish, or the chair, whichever you like.

PROF.  FRANK:  No.  I was just figuring out how to turn my microphone on.  Thank you, Dr.  Pellegrino.   Thank you for inviting me.  And because our topic, my topic, this morning really is how to achieve kindness in highly administered bureaucratic settings, I want to thank Emily Jones for her help getting me down here.   She exemplified the qualities I want to describe this morning.  I'm not sure Emily is still in the room, but thanks very much to her.

My presentation this morning attempts to address the Council's concerns by adding a more practical dimension to the project expressed by the title of my most recent book, The Renewal of Generosity.  Simply put, even when healthcare offers good treatment, it too rarely offers generous care.  My concern is how care can be, not only safe and competent, but also generous.

Because I appear in a series of speakers on the professions, let me begin with a preface in which I'd like to reframe the question of professional crisis and renewal.  My perspective is formed in part by my work with practicing physicians and nurses, but it's also formed by several decades of teaching sociological theory, in which the figure of the professional has a specific and crucial role.  How I see things is also affected by my currently writing a book about how stories enable human life.

I understand social theories as narratives that seek to make livable the tensions of modernity.  One tradition of theory undertakes a defense of modernity, and certainly since Marx, modernity has required defending.  In these narratives of modernity, the professional is cast to play the role of hero.  I mean hero in the tradition of Germanic mythology, in which the trouble that animates the story is a crack in the foundation of the house of the gods.  The hero exists in order to hold that crack together, lest it expand and bring down the gods' house.  In other words, life is a constant struggle between forces of light, the gods, and darkness, which the fall of the gods would bring.

The hero is one who, in his being as much as in his deeds, sustains the forces of light that are always threatened by this crack in the foundation, and that's a core narrative.  Sociology takes up this narrative, casting the professional in the heroic role of holding together a modernity that even its defenders admit is cracked. 

At the start of the 20th century, Emile Durkheim hopes that professional associations will mediate between governments that are too big and distant, and families that are too small and local.  Max Weber emphasizes the professionalism of the administrative bureaucracy.  Thorstein Veblen, for whom modernity is definitely cracked, looks to engineers to save the world through their technical and managerial expertise.  And so it goes in this tradition, culminating at mid-century with Talcott Parsons, for whom the physician represents the historical telos of the professions and the measure of other professionals. 

For Parsons, the physician unifies the competing aspects of modernity:  the drive to personal gain and the drive to collective good.  In the physician's independent practice, he — and my pronoun reflects that I'm talking about the 1940s and '50s — is an entrepreneur, making a living from fees received.  But in the physician's professional obligations, he puts the welfare of his patients before financial gain.  Thus, the professional-as-physician is the hero who, in his being, embodies the reconciliation between the forces of capitalist self-aggrandizement through financial gain — which is the typical motive of the businessperson — and the forces of collective good, represented by religions and state welfare institutions.  The professional physician literally heals modernity, holding together the cracked sides of its internal fault.  Following Durkheim, Parsons understood this crack as the potential for forces of egoistic self-aggrandizement — unleashed by capitalism — to overwhelm obligations to collective need.

At least two questions can now be asked, and I will only pose these, not pursue them.  You have already heard speakers who have shed considerable light on both of these questions.

The first is:  to the extent that this theoretical idealization of the professions, especially of the physician, was ever actually true as a representation of people's lives and experiences, was that because particular historical circumstances came together for several decades, but this specific figuration could not be expected to persist?  Is it possible that in mid-century >America, there was a historically unique balance?  Physicians had sufficient resources of knowledge and technology to be able to offer real benefits to many patients, but these benefits were still sufficiently limited so that demand was not yet excessive, and the means of medical practice were still sufficiently low-tech and low-investment that there was not yet an excessively tempting amount of money in play?  I pose that as one kind of question, or as a hypothesis for a historical investigation.

The second question follows from the first and is the point of this preface.  If the heroic narrative has had its day; if as Max Weber once wrote, the light of the great cultural problems has moved on, what is left?  Here I get to generosity.  What is left is what I have called fundamental medicine:  two human beings in a room, one who is in need, and the other who has at least limited resources to meet that need.

There is a crack in the foundation of this room.  One side of this crack is a level of need that can overwhelm the capacity to offer medical care.  Today, the needs of patients have a potential for almost limitless expansion.  Some of this expansion is in response to the perceived benefits of medicine.  A different kind of expansion stems from medicine's job as a repair center of last resort for people whose bodies reflect the physical degradation of the condition of their lives and work, because there is no other reliable care system. 

The other side of the crack is the increasing commercialization of medicine that Dr. Relman spoke about.  I see commercialization as Dr. Relman does.  Yet, my own meetings with medical students, unsystematic as my sample is, support the recent study by the American Association of Medical Colleges finding that young physicians, as a group, are less interested in massive financial gain than in living balanced lives. 

If I find those young physicians' attitudes to be a cause for optimism, I also recognize that the directions of the profession are being set by forces well described by Drs. Sheila and David Rothman.  Whatever individual doctors may want, physicians are being cast as the point-of-sale delivery agents for a huge commercial enterprise, including but hardly limited to the pharmaceutical industry.  This enterprise wants its products to reach consumers.  Like all good capitalist enterprises, medical commerce has scarce interest in matter of equality,  specifically no interest in how the distribution of its products affects what we can call the social gradient — who has access to what resources, in order to advance their lives in what ways, including marketplace advancement.  For the medical-industrial complex, "consumer-driven" means gearing the nature and the delivery of services to those with the greatest ability to pay. 

So how can healthcare — not just physicians but all those whose work and whose presence affects patients — how can healthcare remain generous, in the middle of this crack between expanding need and demand, and expanding pressure to deliver treatments as commodities?  And, why do I keep my focus on this small room in which fundamental medicine is being practiced, when as I have emphasized, so many external factors are pressing in on that room, affecting what can happen there?  Why, when so many big issues seem to require macro-level reform, do I keep on thinking so small?

To create a narrative of generous medicine, I have needed a helper, and this has taken the form of a personification that I call the Dialogical Stoic, which is a slight philosophical joke.  Yet, the Dialogical Stoic reflects real needs of both seriously ill patients and professional caregivers.  I begin with the needs of patients, because my own direct experience is on the side of the person in need.

Being seriously ill requires two complementary but distinct capacities.  One is the capacity to be alone, both in the literal sense of being by yourself and in the expanded sense of feeling you have only internal resources to get you through what you confront.  Stoicism begins with sorting out what a person can control from what she or he cannot change or affect.  The point of this differentiation is to take the fullest responsibility for what is yours, and to be neither distracted nor distraught by what is not yours.  That is one competence required of the seriously ill.  The complementary competence is living a life that is dependent on the physical care and the moral recognition of others.  I call this competence dialogical because it involves a play of voices.  In care that is dialogical, the voice of each comes to speak the voice of the other; boundaries of self and other remain, but become permeable.  Each sees and hears him or herself in the other, not as identification, but as an effect of mutual recognition. 

Healthcare professionals also have their Stoic moments and their dialogical moments.  Here I include as professionals everyone from physicians and nurses down the institutional hierarchy through technicians to admission clerks and porters, because all these workers are pursuing a calling of offering themselves — their bodies as well as their skills — to other humans who are in need. 

For professionals, the Stoic moment is a refusal of the alibi that because my work is affected by so many rules, constraints, and codes — from billing codes to codes of conduct — any limitations in how I act reflect the limitations of my situation and supports, or lack of supports.  Again, the Stoic begins by taking account of all that she or he cannot be responsible for, but not as an alibi.  Instead, the Stoic uses this separation as a foundation for taking the fullest responsibility for what she or he can do, living a life responsive to others' needs. 

The complementary dialogical moment for the professional involves recognizing what it means to be present to those who suffer.  Dialogical presence is physical — one's body is close to the other's body  —  it is moral, and it is mutual.  The dialogical moment involves seeing beyond all the limitation and frustration to the fulfillment described in the testimony of so many caregivers.  In caring for the suffering other, they discover that their own deepest needs are being met.  Like all ideals, this dialogical ideal is easily overwhelmed.  The question is how to sustain its possibility. 

From the perspective of the Dialogical Stoic, the problem in contemporary healthcare is that everyone — patients and their families, physicians and other healthcare professionals — everyone is waiting for Godot, where Godot is the algebraic X that is filled in by whatever comes from elsewhere and sustains the fantasy that something-from-elsewhere is what we need to solve our problems and restore meaning and goodness to life.  For some person, Godot is a breakthrough drug.  For another, it's reform of the reimbursement system.  For yet another, Godot is new management that will open its eyes and actually see how its policies affect professionals' ability to care. 

The problem of care, of generous care, is that so many people feel like their work and lives are hostages to what only someone else could provide, but is not providing for some reason or another.  So people act as if they can only wait, and become more demoralized, and eventually seem to forget what they were waiting for.  People become what Robert Merton, back in the late 1930s, called ritualists:  they keep on fulfilling their job requirements, but they have given up on their work fulfilling the values and goals that they once felt invested in.  What both Stoicism and dialogism teach, as a practical ethic, is how to avoid living your life like a hostage.  My positive word for this negative injunction is generosity.

People do not feel like hostages because of some failure in their personalities.  They feel that way because the material conditions of their lives and work encourage that feeling.  Healthcare today is heavily routinized, if I can use a sociological term that seems most appropriate.  That is, caring is reduced to routines that have their specific jargon and algorithms.  In the United States, care is mediated by Length of Stay data, as a measure of hospital and physician efficiency; in Australia, there is protocol-based nursing; in Canada, we have clinical pathways that determine exactly when the patient is supposed to need what or be ready for what, culminating in discharge.  These routines reduce professionals — a term implying both competence and independence of judgment — to workers, implying those who implement directions from elsewhere. 

I want to recognize two aspects of this routinization of care.  One is that it begins with a generous impulse, and the other is that it demoralizes patients, families, and professionals.  The generous impulse is to offer the highest standard of care to the greatest number of patients.  Unfortunately, standardizing care means that particular patients will suffer because their needs do not fit the standardization.  Serving the greatest number means that some will suffer so that others can benefit.  The impulses behind routinization may be generous, but being the object of routinized care, as a patient, or having to practice routinized care as a professional, is demoralizing, because sooner or later, either one's own needs are denied or one has to act as the agent of such denial.  Routinization sucks the generosity out of people, leaving them hollow.

If there is, today, a crisis in the professions, I see it on two complementary levels.  On the level of fundamental medicine, the crisis is the disconnection between, on the one side, a patient and a family for whom how they deal, right now, with this illness is the crucial measure of their moral lives.  On the other side of this disconnection is a professional who is trying to meet an administratively imposed standard of expectations, and who has been shaped by those administrative standards into a functionary, for whom this patient and family present nothing requiring distinctive recognition.  To use a Canadian metaphor, these are the two solitudes of healthcare.  And each does feel utterly alone. 

So after all this exposition, why do I think small?  Because despite all the external pressures on the two people in this small room where fundamental medicine is practiced, there can be dialogue between them, and in that dialogue there can be recognition of suffering and there can be care.  For this dialogue to happen, each must effect a stoic separation between what each remains capable of — which is responding to the face of the other, in its singularity and need — and what each cannot be responsible for, which may include the length of time they have together or the scope of services that can be offered.

I think small because I believe that people can have the courage to stop waiting for whatever Godot is supposed to make their lives better.  People can begin to do what they can, with what they have now, to make their lives better.  An important corollary belief follows.  The most effective and efficient way to bring about changes is to act as if they had already taken place, and the benefits can be realized right now.  Utopian as this belief sounds, it reflects a realistic recognition that the 20th Century is littered with the bones of well-meaning reforms that either went nowhere or turned distinctly bad.  Maybe the lesson is that whatever macro-reform is enacted, its eventual effects will depend less on the higher-level planning of that reform and more on the spirit — the morale and the morality — of people who implement those reforms at the point of practice.  The fate of any reform seems to hinge on the character of people who implement that reform.  So, of course, I agree health care requires structural reform.  But that is not a crisis.  That is an historical constant, and it's definitional of modernity.  The crisis is the moral character of those who are practicing healthcare today and who will implement changes in healthcare tomorrow. 

How to enable people's capacity to express moral character brings me to practical generosity.  Here I offer a proposal that truly is modest, at least in its implementation.  What seems realistic is to draw upon one of the great institutional innovations of the last century, which is the recovery group.  Recovery groups are justly criticized from multiple perspectives.  Yet, the fundamentals of the recovery model appeal to a Dialogical Stoic.  At the core of the recovery model is sorting out what a person can control and cannot control, and resolving to work on the former and not be demoralized by the latter.  Moreover, recovery groups trust the power of dialogue to affect lives.  Recovery dialogue is often overly constrained by group ideologies — it's by no means perfect — but the group is committed to hearing and learning from each other's stories. 

What I offer, as a plan for practical generosity, is a one-off recovery model, a 13-step  program for someone whom I think of as a recovering caregiver.  Recovering caregivers suspect that in the battle for their hearts and minds, the best part of their moral selves has been lost.  That is, a capacity for care as response of one human to another has given way to a routinized response of workers to clients.  My prototype candidate of someone who needs to be a recovering caregiver is the physician who is quoted by Charles Bosk in his book, All God's Mistakes, about genetic counseling.  Bosk is asking this physician how he can keep on working in a hospital where things happen as they do.  The physician's response epitomizes the loss of a person's heart and mind:  "What you have to do is this, Bosk.  When you get up in the morning, pretend your car is a spaceship.  Tell yourself you are going to visit another planet.  You say, 'On that planet terrible things happen, but they don't happen on my planet.  They only happen on that planet I take my spaceship to each morning.'"  What does this spaceship physician need, to renew generosity in his life?  In offering my 13-step recovery program, I am well aware that multiple professional associations have worked hard to produce different pledges, codes, and guidelines.  Why do I, without the benefit of even being a healthcare professional, have the presumption to offer another statement of good intentions?  The answer has to be that mine are somehow different; how?  What I find in reading the pledges and codes of professional associations is that they take everyday practices up into the elevated thin air of principles.  These principles are laudable, but they often sound too much like ceremonial pronouncements made on ritual occasions; they seem disconnected from the practical realities that I hear in professionals' descriptions of their frustrations and joys in medical work.  I have tried to write not principles, but behaviorals:  my statements seek to help people to reflect on whether they are acting as they want to.  I've tried to write statements that seem simple, but then have a kind of aftertaste that leaves people wondering whether they are actually doing what the resolution recommends, and what the extent of that resolution is. 

I have also tried to include moments of permission in my one-off 13-steps.  Too many pledges are all obligation.  Stoicism balances responsibilities with letting go; letting go is prerequisite to assuming responsibility.  So several of my statements allow the recovering caregiver to let go, by encouraging reflection of what the person cannot take responsibility for.

Unlike other 12-step recovery programs, I offer these 13-steps not as a canonical statement that must be observed without variation.  These steps are an opening to peer dialogue that will lead to revision of how steps are worded, to the deletion of some steps, and to addition of others.  I would be most happy if peer groups of two or three or twelve took my 13 steps apart completely and wrote their own.  What would count for me is that I had at least instigated that degree of commitment to moral reflection on practices of care, and that much dialogue about practice.  I believe that if the Stoic from whom I have learned the most, Marcus Aurelius, were to return to earth and see people reading his injunctions for living, his comment would be that it was fine to read his writing once to get the idea of the exercise, but what counted was people undertaking the work of writing their own injunctions, reminding themselves of how to meet whatever challenges their ability to sustain their integrity of character. 

Here, then, are my 13-steps — and there's a handout that will be passed around as soon as I'm finished.  Or, my 13 provisional resolutions, offered for dialogue and revision by professionals who feel a need to reflect on what care means in their lives and their conditions of work. 

            1.  Any expertise or skill I offer is based, first and last, on offering my presence as a fellow human being. 

            2.  My words and gestures, and the attitudes I project through my actions, affect the healing of my patients, the morale of my co-workers, and the moral self I become. 

            3.  I am responsible for how I offer care, but I do not work in conditions of my own choosing. 

            4.  I forgive myself for doing what my working conditions require, but forgiveness requires working to change whatever is detrimental to care. 

            5.  If I ever feel my work is out of my control, then I have ceased to be an effective professional and need either a day off, or to lead a protest, or both.

            6.  I refuse to blame patients when their troubles reveal inadequacies of either professional institutional capacity to care or professional ability to treat. 

            7.  I will recognize who — patient, co-worker, or myself — pays what price in which currency — money, time, physical risk, dignity — to keep the institution running.

            8.  I will ask myself:  By telling or not telling a truth at this moment, whom is that serving?

            9.  I refuse the self-defense of blindness to the gap between my patients' needs and what care I can offer.

            10.  When I reach the limit of my ability to provide care, I will recognize what remains uncared for and offer appropriate expressions of regret. 

            11.  Faced with patients or co-workers whom I find difficult, I will first ask myself what difficulties they confront, and how they are struggling to hold their own.  If recognizing their struggle fails to bring resolution, I will protect myself.

            12.  I will never forget that any person's suffering is every other human's vulnerability, including my own. 

            13.  I will seek, in each person, what is most admirable, enjoyable, and soulful.  I choose to respond to these qualities with what is best in me. 

I emphasize in closing that implementing this program for the renewal of generosity requires nothing more than two people sharing an aspiration to put caring back at the center of their professional lives.  There is no need to take control of a professional association, or to plan a national strategy for equitable healthcare, or to alter the corporate development and production of health resources.  There is no need for agreement on what big goals might mean or how to achieve them.  There are just practices of care, reflected upon and refined through dialogue about how we — as some group of professionals, including the physicians and the porters — want to live our working, professional lives, and what we owe to ourselves in how we care for these fellow humans, our patients. 

As people experience themselves being the caregivers they choose to be, they will feel less like hostages and more like those whose lives fulfill a calling.  Eventually, my belief, and maybe my faith, is that when enough small groups put generosity into practice, then institutional policy changes will follow.  The changes that have the greatest chance of having an effect and of turning out for the good are those that enable what is best in what is already being done.  These changes will seem natural ways to catch up with practices that have already shown people what they can do, to be who they want to be.  Then people will say, we did it ourselves.

Thank you, Dr. Pellegrino.

CHAIRMAN PELLEGRINO:  Thank you very much, Professor Frank.  We're very much appreciative of your insight into the beginning and the end of medical care which is with the bedside of the patient, the clinic of the patient, and the confrontation person-to-person.

We have asked Dr. Rebecca Dresser, a member of the Council, to open the discussion.  Dr. Dresser?

PROF. DRESSER:  Thank you.  I'm honored to begin because I'm a big fan of Dr. Frank.  I was introduced to you and your work about 12 years ago by another Council member, Carl Schneider, and at that time, you had just published your book, The Wounded Storyteller

In there you wrote, "People who tell stories of illness are witnesses turning illness into moral responsibility."  With power and compassion, you have been such a witness and many have benefited. 

Now in that book and your earlier one, At the Will of the Body, your thoughts about fundamental medicine came primarily from the perspective of the patient.  And there's appreciation there for health professionals, but there's also a lot of anger and criticism about their behavior.  Some of your other work though and the presentation today focuses more on the professional and from the professional's perspective of healthcare, so perhaps you have come to feel more generous to healthcare professionals in the time that has elapsed.  If so, I'd like to hear about that evolution.  You elude to it in the reading, but I'd like to hear more about that and also how your experience as a seriously ill patient connect and fit into the practices of care that you've presented to us.

And then finally, in the article that we read, "Generous Medicine," you talk about a conversation that physicians can have with patients if they want to help the patient, and you describe some basic questions physicians can ask that are focused on how has the illness changed your life.  I wonder if you have some questions, thoughts, about more specific situations; for example, the situation of breaking bad news to a patient, talking to a patient who is refusing treatment that the physician thinks is beneficial.  What questions might the general physician ask patients in those contexts?


PROF. FRANK:  I assume this meeting is going late into the evening to respond to all of those.           

Thank you for that lovely summary of where I've been and excuse me if I reply fairly selectively to an extremely global question that you've put to me.

You're right.  I have changed my attitudes toward professionals.  Maybe because it's been, very happily, a long time since I've been seriously ill, although I've continued to go through serious illness with people who are very close to me, and I've seen both their frustrations but also how incredibly much they've been helped by physicians.

It's also that so many physicians over the last 15 years have been so extremely kind to me in terms of, not just in inviting me to speak various places, but really taking me into their confidence and talking to me so candidly and movingly about their joys and frustrations, as I said, and I've really gotten to know these people.

This year I have the privilege of having a group of medical students whom I meet with on a sort of regularly irregular basis and just talking to them about everything they want to hold onto as they move into professional life, and I want so much to do what I can to help them to be able to hold onto what's best in themselves.

And, of course, we have a long literature on what happens to medical students, and it's one of the most depressing literatures you can read because, ever since Boys in White studying medical students back in the late '40s, the story has been exactly the same.  You start off with these incredibly idealistic, highly motivated young people, and you produce cynics and skeptics.  And really the only thing that's changed much in that literature is where the production takes place, whether it happens toward the end of medical school or now it seems to happen more during residency periods, but we could call it the institutional production of cynicism.  It's really the lesson of that literature.

So how do we help these people stay who they are?  That's been the big question for half a century.  And people are doing an enormous amount of work about that.  I also work with people involved in medical education.  They're acutely aware of this. So I'm trying to do my small bit to contribute to this effort, and that's part of the presentation today.

In terms of my experiences, it's a matter of thinking through everything, whether it's a medical-economic question or whether it's a question of professional identity in terms of what its impact is going to be on those who are most vulnerable and most in suffering now.

The fundamental asymmetry of the medical encounter, of what I'm calling fundamental medicine, may not be differential expertise, may not be differential access to resources.  It's the fact that something is going on in one person's body which is terrifying.  They're frightened.  That's their vulnerability.  The rug is getting pulled out from under their lives.  And the other person has the grace to be enjoying another day at the office, and that's really the divide that has to be crossed.

So how do we think through every single question in terms of what it is like to be this person who is perhaps in pain, most certainly afraid, uncertain, wondering where this is going to go?   How do we always see it from that perspective and the perspective of the person who has the least resources to deal with the situation?  I take a lot of this from liberation theology which I think is extremely important as a moral foundation. 

In terms of your notion of questions, rather than pose more specific questions on this occasion, that is questions — you mentioned bad news, or patients who seem ill-advised and refusing treatment. I think that way lies at the core of these impasses, these sticking points — it's very often that one person simply doesn't know enough about how the other person is trying — and the phrase I like to use — trying to hold their own.  And a lot of the impasses can seem much more resolvable if some background questions are asked about the person's life if you maybe just step back from the immediate impasse and find out something about where this person has come from.

The greatest rounds I was ever asked to do in a hospital, the greatest in the sense of the most fun and, I think, the most productive, was a small hospital in Chicago, and they brought in someone who was their "difficult patient" for me to talk to.  And I started off talking to her, but not about the things that were of concern to the medical staff at that moment.  I noticed that she was born in the early '20s.  I said, "So you were kind of eight or nine when the Depression started.  Did you notice this?  Did it have much effect on your life?"  Wow, did it ever, and she took off, and she told us this incredible saga about a life that included all kinds of enormously difficult circumstances.  And I asked her just some kind of generals helping along the way to keep her telling the story of her life.

The two points of this:  One, when we got to the end, the attending physician whose patient she was officially, although she was cared for by everybody there, pointed out that it had only taken 20 minutes.  Now this is someone with advanced diabetes, at that point was in and out of the hospital monthly, eventually was in the hospital fulltime.  For the hours of care, the days, you know, all the institutional resources, 20 minutes was nothing.

The second point was that in the followup that he was kind enough to send to me a lot of these difficulties just seemed to fade away because she felt she was being treated by people who knew who she was, where she came from, how she was trying to hold her own, and how her present difficulty was part of that holding her own.   And they realized who they were dealing with, that this morbidly-obese, eccentric old lady had a story.  It was an incredible story. 


CHAIRMAN PELLEGRINO:  Thank you very much.  The paper is now open for discussion.  Bill?

DR. HURLBUT:  Well, I think you've clearly identified and described the disease, but I want to ask you about the diagnosis a little bit and the etiology, if you will, implicit in the diagnosis.

You began with this comment about the crack in modernity, and reflecting on that as you were speaking, I was thinking about the meaning of the word "modernity," which has an interesting kind of source in that it's rooted in the notion of a concept of a measure or a manner, particularly of or pertaining to present times.  And it comes from the same Latin root, I guess, that the word "module" does, the idea that there is a kind of interchangeability of things and things — and we all know what this is about.  It's a sense of, well, this is our way of seeing the world.  This is our era.  It's not every era. 

And what strikes me is that you're calling for very deep things here, the concept of generosity and its relationship to both suffering and gratitude.  You cite this notion of this spaceship, and I remember very well my early days of training in medical school, what it was like.  You enter into a realm that is largely sequestered into a special zone in our civilization.  It's not in a lot of past (and some present) societies.  But suddenly as a medical student you're thrown into an encounter with suffering, with death, that you don't really experience, at least not in most suburban existence and relatively affluent urban existence.  It's a dramatic and powerful encounter. 

You immediately are besieged by a reality that is not one you've adjusted your life and philosophy to for the previous decades.  And medical students typically go through a phase that's sometimes called "medical student disease" where they start finding the symptoms of the diseases they're encountering in their own bodies and actually are going through a very trying and troubling and sometimes very difficult transition to an acknowledgement of their own frailty and finitude, their own mortality actually.

Well, what I want to ask you about is basically this.  It struck me at the time of my training and it strikes me now that the crack in modernity is really a crack in creation or at least in the way that creation is operating.

It's the reality of something that is not easy to accommodate, namely, death.  And you've laid out some very good ideas here.  I certainly concur with the central themes of your 13 steps.  But I wonder if the diagnosis isn't deeper and if the cure more fundamental; namely, to say that we need a prevailing philosophy in our civilization that actually directly contends with the mystery of human life and death.

I think when I've observed people caring for others in the manner that you describe it usually comes from something very profound where they are no longer hiding from basic reality but have found a way to both reaffirm what you are calling the vulnerability of others.  But also, it isn't enough to be fellow victims of a horror.  It requires hope.  It requires some source of hope.

And so I just want to lay that out for your reflection because part of the modern world has been a very materialized — I don't know how to say it exactly — a very material vision of what creation is.  We see the crack as almost a material crack as opposed to a disorder of spirit or meaning. 

And I wonder if in moving beyond religious traditions, moving beyond even the feeling of the recognition of what literature usually has supplied in its cultures into a realm of the new and the modern, we might have actually left behind some of the solution.

PROF. FRANK:  Well, a lot of people have said exactly that.  And again, this is a huge issue that you've put on the table.  I really love your phrase, "no longer hiding from basic reality."  And rather as seductively enticing as it would be for me to trot out my favorite philosophers of modernity and the ways in which they've responded to your expanded version of this crack, actually I was trying to discipline myself today and stay away from the expanded vision to a somewhat narrower vision because I guess my own tendency is to go exactly where you're going and see the more expanded issue, and we can talk about ways in which an enterprise like sociology is really a secularization of what was previously a theological vision and trying to handle the same problems.  So I agree with you exactly.  I'm just a little reluctant to go there.

Where I would like to go from what you've said are the comments you made about your own training and the way you felt.  The University of Calgary has a good medical school.  I know a lot of the people who teach there.  Some of the people who teach there are also people who care for me as physicians, and I know they're really good.

When I asked my medical students to take a look at the draft of my 13-step program — and they were very kind in helping me refine various things — one of the things that was fascinating was how many of these points, all of which I take to be pretty obvious, they said, "Nobody has ever said that to us.  Nobody has ever raised that issue."  I mean, the need that I hear reflected in the things that you've said, very moving things about your own training, why isn't there someone there raising these issues in medical schools?

The most contested thing that I see in the medical schools that I visit is time.  They're just constantly having curriculum fights over very small units of time and who gets an extra hour lecture block and all of these things and, you know, if they want to introduce something new, it's like the priests of Nemi.  Someone has to be killed off so that someone else can get, you know, their lecture slot fitted in for their kind of thing.  And these are not handled in generous ways.  They're handled in quite Machiavellian ways very often.

Why aren't these students getting the kind of — well, I'll use the contemporary word "mentoring" — but that's a more secularized word than I really mean.  Why aren't they getting the mentoring, counseling, advice from our more senior people, what our first nation's people would call "elders," helping them adjust to this divide that you've described so well, because it is overwhelming.

One of the most interesting subgroups of medical students are those who become seriously ill either during medical school or they enter medical school having already gone through an experience of serious illness.  And if you attend to their voices, you can learn a great deal.  They generally feel quite alienated, quite marginalized.  The medical school doesn't have any particular vehicle for taking their experiences onboard and treating them as privileged witnesses again or, in an anthropological sense, privileged informants.      That really says a lot about what's missing in medical schools nowadays. 

So I think the value I would take from your reflections are what's missing and, without getting to the kind of usual curriculum wars, how do we find ways to make this available to these students, because there is advice from elders that can certainly ease this.

On one level, everyone just has to confront these things him or herself and there are ways in which that's just going to be a rough passage for some people.  There are also ways in which having someone guiding you, the proper companion, can make an enormous difference.

CHAIRMAN PELLEGRINO:  Thank you very much.  Dr. McHugh?

DR. McHUGH:  Dr. Frank, I very much enjoyed your talk and want to emphasize before I ask another question what I most appreciated about it.

First of all, I appreciated the historical setting in which you pointed out the transition from physicians in the '50s to now with the advance of technology, the intensive care units, the things of that sort that make our capacity so much greater for the care of patients, for the treatment of their diseases, and at the same time so much more expensive and, therefore, costing us in various ways in our professional aims, purposes, and often feeling abused in the process by the managers of those technologies and those institutions that provide these things.

It is said, by the way, though as usual, that the problems of today are due to the solutions of yesterday.  I can tell you that certainly in this case, it is true.  What we could do before the intensive care unit came with all of its equipment and the discoveries of medications and technologies it made possible, I remember very well, and I now see and am, in fact, the product of that kind of care that has extended my life even, as I understand, more of the demands that were put on the doctors and the nurses in that process.  So I very much appreciated that vision that you brought to us.

The second thing I very much appreciated was, in your discussions here and even very much in your 13 points that you are emphasizing, that we should be self-questioning people in the process as professionals.  The greatest and most thoughtful people in any profession, but particularly in medicine, should be people who are questioning themselves and questioning their processes as they work at what they're doing.  And in that way, by self-questioning, they can improve, not only themselves, but also the organizations that they're in.  I very much appreciated those points that you're making and would align myself with a lot of what you're saying.

But I have to say that there's a problem really for someone.  Perhaps it's because I was educated in the '50s, and there may have been at that time a posture of development that was different.  I don't really think it is radically different, but it might have been a different cast in the context of that time.

But at that time what was very clear was that one of the things expected of us as doctors that are not mentioned here would be that we were going to be taking risks, even risks at great cost to oneself, to become a successful and quality and real physician and that these risks were deep and important.

In fact, if I can tell a little story — you believe in stories.  I believe in stories up to a point.  They persuade and seduce as well as to inform, but here's a little story.

When I was graduating from medical school, the leading physicians in the departments of medicine in the three Boston hospitals came to talk to us about why we should go to the Brigham, to the BI, to the Mass General, the Boston City Hospital.  But the only one I remember was Dr. Herman Blumgard, the head of medicine at the Beth Israel Hospital, and he got up before us all bright and shining physicians-to-be and he said, "Well, if you come to the Beth Israel, I have something to offer you.  It's called poverty, chastity, and obedience.  And out of that process though, you will become an excellent physician of the kind that you wanted to be."

It was a direct challenge in this way, and I'm trying to voice it in this way, to this beginning of what you said, which was that in the contemporary era when you talk to young physicians, or young medical students anyway, that what they're looking for is balanced lives.  And I submit to you that that is a non-risk-taking position that, if you can't at the age of 25 or 26 be willing to say, "I'm going to venture out and see what happens and do what I can for the benefit of my patients, and I hope I'll get a balanced life ultimately and I hope I will have something meaningful to show," I'm not sure that you can be anything ultimately but a cynic in the long run, that ultimately you need to have the capacity to say, "I'm going to give it my all," and in that way have what I believe is the ultimate aim of this development, by the way, often developed by example and not necessarily being taught in the form of ethics by example in which the aim and purpose of the education was to develop an integrity of your desires that will justify other people to trust you.

And that does mean sometimes having an unbalanced evening or two.  And it's that that I want to ask you, Dr. Frank.  Where is the risk-taking here in the process of, as I would want for you and for me, to be generous?  But "generous" now means generous at the level of the blood and bone.

PROF. FRANK:  It's a very eloquent statement of a professional ideal, and who wouldn't want someone who expresses that, who embodies that, as you've said it?

There's a level at which what happens is not going to be decided by you or by me or by the Council.  Life will go on, and forces will shape what happens and, in my view, contingencies will enter in that we can't imagine, and these young people will become who they become in institutions that require them to become that sort of person.  And whatever either of us would like, it will happen.

The issue is — as I was reading this, I was struck again at how I was perpetually dividing things into two through my whole talk.  It's the most binary-oppositional talk I've ever put together, and I think the reason for that is when I try to think seriously about these issues it always involves a balance.  It always involves, well, there's this side, but then there's this side.  And both sides of that balance have their demands.  Both sides have some legitimacy behind them.

You've spoken very eloquently about the physician who takes risks including his or her own life.  First of all, these young people often do do that.  They go to third-world countries.  They've often got into medical school on the basis of having taken years off doing work that was dirty work in different places.  They're highly committed.

By the same token, what I hear in this notion of balanced life — and it's a researchable question.  We could all hear different things depending on who we're tuned into.  But what I hear is a recognition that the old heroic image is really no longer attainable and it always had its downside.  The downside was the physician-as-god syndrome.  The downside was medical paternalism.  It was a lot of things that instigated bioethics back in the 1960s.  You know, it's what got people like Paul Ramsey and Jay Katz and others to realize that there was a necessary counterbalance that had to be brought in because medicine was somewhat out of control, and we're here today in response to the, I think, quite correct perception that there was excesses of physicians who were not risking with their own lives.  They were sometimes risking with other people's lives and not getting the fullest consent for the risk they were taking with other people's lives.

And so there's the heroic side and there's the dark side, and if physicians today want balance, it's not just that they want to have their own evenings with their families.  It's also that I think they are looking back on certain excesses of the past, and they're seeking to avoid those.

And, unfortunately, what you said is entirely true.  Every present age is a solution to the past age and it tends to throw out often some of the finest aspects of the past age in an attempt to remedy some of the excesses of that age.  And to that extent, we're all on the wheel of history, and we try to hold on to what is best.  Sometimes we're successful.  Sometimes it gets lost for a while and has to be brought back at a future period.

What I've tried to do is the smallest way in which I can think about people recognizing the deforming influences of the institutions in which they work and holding onto the best impulses which I think were part of the challenge that was being presented to you.

It's such an ironic thing to have Beth Israel quoting the Catholic monastic tradition, but that's an example of being able to reach across and take whatever was best from the past and hold onto it, and that's what we need to do.

CHAIRMAN PELLEGRINO:  Professor Schneider, this will have to be the last comment.  We've used up our time.  Carl?

PROF. SCHNEIDER:  In the interest of having the trains run on time, I'm happy to yield back my time.

CHAIRMAN PELLEGRINO:  You don't have to.  You do have the floor if you wish it.

PROF. SCHNEIDER:  I'm going to get it pretty soon, so I'll wait.  Thanks. 

CHAIRMAN PELLEGRINO:  Thank you.  We will reassemble at 10:30.


  - The President's Council on Bioethics -  
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