James Hallenbeck, M.D.

Improving the quality of palliative care

Joanne Lynn and colleagues have just come out with a great new book, The Common Sense Guide to Improving Palliative Care. (OxfordUniversity Press, 2007).  Like their prior work in this area (Improving Care for the End of Life, now in a revised version, 2007), this pocket-sized book discusses quality improvement strategies.  Using explicit examples from teams working in various venues in which palliative care is practiced (palliative care consult teams, ICU, nursing homes, hospices, etc.) the authors demonstrate how measurable improvement can be accomplished by following some straightforward quality improvement steps.

In reading the book one is struck over and over by the thought, “Yup, that really is common sense.  The rationale for the described projects (improving pain management, transitions in care, advance directives etc.) and the steps taken seem clear.  ‘We could do that where I work!’  And yet, I suspect in many if not most places we work, this is not what happens.  Why?  Here, I will consider three possibilities: 1) Quality as someone else’s job syndrome 2) Lil’ ole me syndrome and 3) the Saints and Angels Syndrome.

Quality as someone else’s job    

All organizations struggle with variants of “it’s not my job syndrome.”  However, in recent years a relatively new problem has arisen – especially in large healthcare organizations.  A whole industry has arisen dedicated to improving quality.  The ease of collecting and organizing data in healthcare has made it possible to track, trend, and compare much of what we do.  Often, this is a very good thing.  Large data-base driven quality improvement can result in tangible good by mandating, for example, flu vaccines for the vulnerable and then measuring the percentage that get vaccines.  However, there is a down side.  Too often there is a wild proliferation of “quality measures.” Huge teams of “quality managers” must be hired just to keep track of it all.  The clinician, if he or she is paying any attention, must spend a lot of time “coming into compliance” with somebody else’s idea of what is important.  And that’s the problem.  “Quality” can become a dirty word – something to be avoided and a threat to the individual and the organization.  I fear clinicians are becoming adverse to the concept of quality improvement as an intrinsic aspect of their job.  Lynn and colleagues make a compelling case that we must not let this happen.  Some problems cannot be improved by fiat from managers on high.  Some problems are best identified and solved by people living with those problems. 

Lil’ ole me syndrome

Look around.  It’s so clear that we have some huge problems in healthcare that will require large-scale, national fixes.  When we get busy and overwhelmed, it is so tempting to say, “Well, who am I?  I’m just one person.  What is really needed is…”  That may be true, but it is easy for this to become an excuse for not tidying up our own backyard.  The “Starfish Story,” so popular in the hospice and palliative care world addresses this problem.  You probably know it, but for those who don’t:  After a bad storm (like Katrina) thousands of starfish are washed up on a beach.  A boy walks along throwing back one starfish after another.  A man comes by and says, “Look at all those starfish!  You’ll never make a difference doing that.”  Flopping another starfish back into the surf the boy replies, “Made a difference to that starfish.”  Good point!

Now if you think about it, the man also had a point.  While tossing individual starfish back did help those individuals, perhaps it would have been more effective for the boy to rally his friends, or his school to help out.  So, we may be more effective in what we do if we work in teams, as admirably described in Lynn’s book.

The Saints and Angels Syndrome

There is no need for quality improvement in heaven.  Hospice and palliative care rightly pride themselves on the wonderful people who work in the field.  While we sometimes draw scorn from people who, I think, misunderstand us, more often we bask in the praise of patients and families who receive our care.  There really are some saints and angels in our field.  But that too becomes a problem IF we come to believe that things are so wonderful, so close to heaven that there is really nothing to improve upon.  So here’s a dirty little secret.  Too many in our field are allergic to the types of quality improvement efforts described by Lynn and colleagues in their book – where data (numerators and denominators) must be tracked.  I’m not exactly sure why this is so.  Perhaps it is because some think that numbers dehumanize what we do.  Hospice as a movement arose in part in reaction to an overemphasis on scans, numbers, and data to the neglect of the human heart. 

I think we need to take a cold, hard look at the problem.  While too much of an emphasis on data and numbers really is a risk, if we are really going to be of help to the patients and families we serve, we must be willing to use all tools available.  And sometimes that means numbers.  Lynn’s book suggests a happy medium for this conundrum.  While encouraging systematic planning and data collection, the authors never loose sight of the ultimate goal – to improve quality of life. 

The book is highly recommended.

Got Palliative Care?

I was at a meeting of champions for palliative care the other day, which included a brainstorming session of priorities for the future.  The usual culprits were rounded up - changing reimbursement structures, addressing concerns about quality of care, working on improving continuity of care, and education, among others.  One suggestion caught my attention – the need to deliver one message in one voice.  My first thought was that the timing for this was premature.  Significant differences of opinion exist on a host of issues and these differences need to be respected.  “One voice, one message,” runs the risk of shutting out needed debate and suppressing dissent; it is not always a good thing to ‘stay on message.’  But it also occurred to me that perhaps what was needed here was not so much the final product, “one message” but a process in which needed dialogue would occur.

Still, as an exercise, I thought it would be interesting to consider what that message might be.  A commercial I saw on TV (over and over) came to mind, “Got Milk?”

Got Palliative Care? 

If you haven’t seen this string of ads, they go something like this. Wikipedia on Got Milk A guy is eating some cookies, when he realizes he needs something to wash them done.  He opens the refrigerator, grabs a carton of milk, only to find the carton is empty and he is stuck with a mouth full of cookies he can’t swallow. At the end of the ad, the words, “Got Milk” appear.  I know, my telling of it isn’t funny, but just for fun let us consider this as a metaphor for palliative care.  Perhaps there is something we can learn from this award-winning ad that apparently revived milk sales. 

The ads seem to invoke some key notions about the product, milk, which would apply equally well to palliative care:

• The product is a staple and should be widely available.
• The product should be there, when you need it.  All you have to should have to do is ask for it or open the door.
• This is important, because you cannot always predict exactly when you will need it.
• The product is basically good for you – in addition to helping meet your needs.
• The product is highly affordable.
• You already knew all this, but perhaps you just needed a little reminder. 

It is not hard to see how far we are from this ideal state in terms of palliative care:

• Most people (lay public and clinicians) do not know what palliative care is or at least have serious misunderstandings about it.  Concerns still exist that: provision of palliative care may be harmful to your health, that life-saving technologies will be denied, that people will give up hope, that what we are really trying to do is to hustle people along to hospice, where they will just end up getting hooked on morphine.  These and other stereotypes are all too common.  We need to dispel these myths.  We are all for hope!  We are about honoring people’s preferences, not hustling them anywhere. We value life; people live better and often longer if they are properly palliated.  Bottom line: We need to demonstrate that palliative care is good for you!
• Most healthcare managers do not view palliative care as a “must have” service. While you can reasonably expect to go to any hospital or clinic and find something like Cardiology (a staple), it would be a pleasant surprise to find Palliative Care.  So, as of 2006 palliative care is not likely to be available, when you need it. 
• Even where attitudes toward palliative care are improving, many healthcare organizations seem to have the perverse idea that most anything that is good must be a luxury they cannot afford to provide.  Thus, palliative care, where available, is dolled out in small spoonfuls like some expensive caviar.  In promoting palliative care we are not talking about caviar or putting a Jacuzzi in every hospital room, we are talking about something for which there is substantial evidence that the care provided both saves money and results in superior clinical outcomes.  But right now, most healthcare managers just don’t believe it.  We need to challenge this disbelief. 
• While people may be fuzzy on what palliative care is, they have a very clear sense of what they expect from the healthcare system.  It is rather old-fashioned.  They expect a competent and caring response.  They expect reasonable and timely access to care.  Most everybody would like to live longer and have curable things cured, but they are also are of the limits of mortality.  They are acutely aware that illness is unpleasant at best and can be torture at the worst.  They fear this and expect us to attend to their suffering and promote their quality of life at any stage of illness. While people may expect this, they are rightly concerned that such care is too often not available.   They don’t know it, but what I think a lot of people want is palliative care. 

So, milk producers wanted to see more people buying milk.  Apparently they did.  What would I like to see?

• I would love to walk into a patient’s room, identify that I am with the palliative care service and be greet with, “I’ve been waiting for you,” rather than what I usually get – “what is palliative care?”
• I would love to see patients, families, and clinicians ask for palliative care by name, because they did not want to loose hope…
• I would love for patients to comparative shop on health plans and healthcare regarding the availability of palliative care.  If competent, respected palliative care services were not available, they would take their business elsewhere. 
• In turn, hospitals, clinics, and nursing homes would actively promote the availability and quality of palliative care of course because it’s the right thing to do, but also because it gives them a competitive edge and is accepted as a good business practice. 
• I would love for palliative care to be just like milk – nurturing, but nothing special - something you would expect as a matter of course when you open the door.

We’re a long way from this ideal.  But perhaps we can think about some steps we might take along the way.

The Birth of a New Medical Specialty

Yesterday, September 19, 2006 the American Board of Medical Specialties (ABMS) voted unanimously to establish a new medical subspecialty of Hospice and Palliative Medicine.  This action follows similar approval on June 26 of this year by the American College of Graduate Medical Education (ACGME).What does this mean?  At the simplest level, this new medical subspecialty now has the same formal status as, say, Cardiology or Oncology.  In my opinion, this is to be celebrated.  Subspecialty status has both symbolic and practical importance.  Symbolically, such status represents legitimacy within the world of traditional medicine.  This buys us a “seat at the table.”  Practically speaking, subspecialty status will open up new funding streams for training and research that were previously unavailable.  For example, Medicare dollars may be used to support fellowship training in palliative medicine.  Hopefully, we will see rapid growth in the number and quality of palliative care programs in our country.

Good news though this may be, the potential ramifications for the broader social movement of hospice and palliative care in the United States are complex and worthy of consideration.  Is this just a big deal for physicians or might it have deeper implications for other disciplines and for the broader hospice and palliative care movement? 

In considering the possibility of subspecialty status, physician leaders in palliative care have recognized the obvious advantages such status brings.  However, many have also worried about potential downsides.  Does legitimization mean “co-opting the revolution,” to borrow a now antiquated phrase, - denying the history of hospice? Put bluntly, is subspecialty status a “sell-out” to the system?  Personally, while I think there is a risk that we will forget our roots, I also think the risk is worth it.  I may be wrong, but in this case I think we have a better chance of changing the system if we are part of the system.  (Foolish optimism on my part, perhaps.)  A second question that has arisen is, ‘In creating a subspecialty, does this mean we are saying that only those physicians certified by board examinations can practice palliative care.’ Put another way, does this mean we are creating a “monopoly on suffering?”  Hopefully, the answer to this is, no.  As I argued in a recent editorial, (Hallenbeck, J. Palliative Care Training for the Generalist – A luxury or a necessity. J. Gen. Int. Med. 2006; 21(9):1005-6.) I think most palliative care can and should be done by non-specialists.  Palliative care must be woven into the overall fabric of Medicine.  However, I also believe there is a role for the specialist in particularly difficult cases.  Equally or more important, specialists can and must serve as educators, researchers, and leaders, who can ‘work the system’ for broader, lasting change. 

So, if I am cautiously optimistic, as I am, what is there to worry about?  I am worried that what has been to date a relatively united movement directed toward improving care for the sick and the dying will become fractured.  With subspecialty status new associations of largely hospital-based palliative programs are inevitable.  The question is – will the movement continue as the “hospice and palliative care movement” or will this development force a schism between hospice and palliative care?  There are grounds for concern.  State and national hospice organizations have generally added “and palliative care” to their titles, but are they really taking palliative care seriously?  Are they recruiting and supporting palliative care programs into their organizations or are these really hospice organizations with the addition of “and palliative care” as a politically correct, pro-forma act?   On the flip side, some in palliative care look to be at risk of forgetting that science without art, without soul, is just technique and ultimately sterile. In my opinion while some differentiation between hospice and palliative care is inevitable, even desirable, hospice and palliative care still need each other.  The world of hospice needs the improved knowledge, skills, and access that palliative care will bring.  The world of palliative care needs hospice as a system of care for the dying, but also as a keeper of a treasured legacy – that whatever this work we do is all about it must not be narrowly and solely defined in terms of medical practice.   Our work must be conducted in clear awareness that is this is just one service among many in which people strive to help other people.

So, while I have some concern, this is a time for celebration and, when in doubt, we should be optimistic!  I’m optimistic that subspecialty status will mean that:

·        we will learn better ways to alleviate suffering

·        that we will have more and better-trained clinicians  able to alleviate suffering

·        new programs and organizations will evolve that will enable us to provide this better care

·       we will have improved access to the tens of thousand of Americans, who currently suffer unnecessarily because palliative care (and in turn) hospice are not available or even considered as options

·        the overall quality of care we deliver will improve

And that strikes me as a very good thing

Happy Birthday!

Famous Last Words

A time for last words will come for us all.  Some, will be treasured by families as precious legacies.  Some, will be lost, muttered in dreams or spoken to an empty room.  A very few will become Famous Last Words.   Why is it we seek out these words?  Perhaps we are looking for the perfect ending, a coda, summing up life in a neat little bundle.  We imagine last words to be a person’s most honest statement of self, a solution to any residual puzzle, stripped of any artifice.  Whether witty, noble, or tragically reflective of stubborn ego, these most personal haikus stand as testimony to our collective humanity.

Why is our attention drawn to certain Last Words and not others?  Of course, we have a vested interest in the Last Words of those we have loved.  There is, I suppose, a gossipy curiosity about how the Rich and Famous die and perhaps we quietly revel in the fact that They, like us, are mortal.  In reading Last Words, I also realize that some Words resonate more deeply within myself.  It is not so much who spoke the Words, although that too is entertaining and instructive, but my own connection with that aspect of my self that might have spoken those Words.  In Noel Coward’s words, “Goodnight my darlings, I’ll see you tomorrow,” I recognize my own hope that in fact there will be a tomorrow and we will be together again (and a fear that this might not be so).  Winston Churchill said, “I’m so bored with it all.”  Indeed, boredom is a great curse of aging, illness, and dying.  While a sad note from such a dynamic man, one also hears openness to death as a release from suffering.  I can relate to that.  “I’ve spent a lot of time searching through the bible, looking for loopholes.” – W.C. Fields. Amen! I chuckle in fond memory of Fields - hope he found some for me… . .  Queen Elizabeth, so regal, expressed a most common sentiment, “All my possessions for a moment of time.”   The father in me sympathizes with King George V, who asked, “How is the empire,” even on his deathbed.  Will I ever be able to let go of all my responsibilities?  When Goethe said, “More light,” was he trying to see better this world, or was he seeking a light beyond?  We are all condemned by our mortality and none of us are completely innocent.  Am I forgiven for empathizing with Neville Heath, whose last words prior to execution, when offered a drink, were, “Make mine a double?”  Hegel said, “Only one man understood me and he didn’t understand me.”  I could have said that!  But would you have understood this statement of arrogant ego and loneliness?  I admire Hokusai, the great Japanese painter and print-artist for stating, “If heaven had granted me five more years, I could have become a real painter” and am reminded that I too face inevitable limitations in my progress along the way.  Florence Nightingale inspires with her words, “Too kind, too kind.”  I hope I can find such kindness in myself.  I’m afraid I’m more likely to say, as Lytton Strachey did, “If this is dying, I don’t think much of it,” or “Either that wallpaper goes or I do,” as did Oscar Wilde. 

Perhaps my favorite Last Words are those of Charlie Chaplin (not really, but close enough), in the final scene of his final movie, Limelight.  Just before he goes on stage for his last comic performance, he tells his companion, played by Buster Keaton, “We are all amateurs.”  Isn’t that so!  The words of a Master.

I don’t know what my last words will be.  I hope they are not, “oh s**t” before some terrible accident.  At some level I’d like them to be profound or at least not horribly embarrassing. (Residual pride in me, I suppose.)  Perhaps something like, “Tag, you’re it...”  What do you imagine you might say?

At the KARA conference referenced on the prior blog I shared the famous last words above and offered a poem I wrote, which follows below:

Famous Last Words

One last chance.

To speak a word of wisdom,

To crack a final joke. 

Knock-knock

Who's there?

Rosebud.

Whose Rosebud?

A child’s sleigh lies covered in drifts of memory.

Snow falls cold and silent. 

Now ancient metaphor, lost on the ears of youth.

Who still listen…

Grasping…

For some hidden meaning, some secret

Something

Which might make sense of this unbecoming business of unbecoming.

Disappearing into Pictures

Again, this year I was honored to MC KARA's annual meeting, held on June 9th. (KARA website) Below, are my introductory remarks.

Disappearing into pictures

A modern Zen master once spoke of dying as “disappearing into pictures.” Those words resonated with me and I think of them often. People have different ideas about where we go when we die. Wherever it is, those of us still living continue our relationship with those who have gone before us. I think the master was prompting us to think not only about death, but these relationships with the departed.

When I first walked into the VA nursing home in Menlo Park many years ago to work as a physician, I was greeted by rows of pictures on either side of the entrance corridor - pictures of young men and women in uniform, mostly in black and white. They looked like photos from some old John Wayne movie – handsome, young pilots standing next their planes, swabbies, WACs, and Waves. I didn’t know any of them. Over time, I did come to know and care for many of them. Most all are gone now, their passings marked by gold stars on their photos. Back then, it was hard for me to see the optimistic youths of those pictures in the eyes of the patients for whom I cared. Just as I am sure it was hard, if not impossible, for those young men and women to imagine growing so old. Pushing further back, I try to imagine them as young children and infants. In my mind, I know that they once were, as were you and I, but it is so hard to see. I imagine photos, taken in childhood, adulthood, and old age. Now that they’re gone, which photos reflected the true person?

In his book, Slaughter House Five, the author, Kurt Vonnegut, invented an interesting race of beings, called Tralfamadorans from the planet, Tralfamadore. These beings somehow existed outside of time and were thereby able to view everything and everybody across past, present and future. To Tralfamodorans, outside of time people look something like caterpillars – segmented creatures, small and tapered at both ends. To them, what we imagine to be an ever changing present self is nothing more than flashes of awareness of individual segments along the caterpillar’s body, each imagining that only they exist. To this image we might add a peculiar attribute of our species. In most cases the caterpillar is diapered at both ends. This diapering is calmly accepted at one end and yet is a source of great distress at the other, something quite mysterious and otherwise unknown in the great cosmos.

I don’t know if you find such a notion reassuring or disturbing. Personally, I find it useful to try to adopt a Tralfamadoran perspective. In the young boy I try to imagine the old man. In the old woman, the young girl.

From a more human perspective it is our nature to make and hold onto images of people we have lost. Images formed on paper, stone, in letters, and in memory. We might wish that we could perfectly sort the images, keeping only the happy ones. Some unpleasant, some ugly images cannot be so easily thrown away. They ache, like old battle scars.

When loved-ones die, we create memorials. Bu we are uneasily aware that these images will eventually fade just as photos fade in albums handed down across generations. Monuments turn to sand.
We can imagine new paths to immortality. Photos can be digitalized! In Google we trust that we will live-on in some cyber-version of eternity. And yet we know this too is not true. Some day, Google and the great Net will also tear and fall to cyber-dust.

Still, we persist in our remembrances and build monuments in spite of this truth. There’s something heroically human about that.

The Zen master spoke of disappearing into pictures. I think that’s important. It is tempting to dwell on the loss, the disappearance and miss this key point. Wherever the departed go, they remain with us in images. They remain with us and walk with us on our own caterpillar’s journey. There’s solace in that.

This annual meeting provides for us not only an opportunity to learn, but to reflect and remember. I encourage you to think back over this past year to gains and losses, joys and sorrows. What pictures come to your mind? Who walks with you on your caterpillar journey?

Volunteers and Hospice

One of the more enlightened aspects of the Medicare Hospice Benefit is the requirement for certified hospices to have volunteer programs.  Because of this, volunteers have become an integral part of Hospice culture.  Let’s consider the role of the volunteer in end-of-life care.

Dying is both an intensely personal and yet public experience.  Most dying people are dependent on others for medical care and basic support.  In the past, the responsibility for such care fell first and foremost on the family, which was in turn supported by the larger community.  The provision of medical care by professionals was at most an ancillary service.  Today, much care is provided by professionals.  Families and the community too often have little, if any, role - except in hospice, where families play a central role and “community” manifests in the work of dedicated hospice volunteers. 

It is too easy, I think, for those of us who work in hospice and palliative care professionally to take hospice volunteers lightly. I know I’ve been guilty of that far too often.  After all, we are busy about the work of demonstrating the value of hospice and palliative care to our medical colleagues.  Yet, considered through the lens of volunteerism, we can glimpse a more ancient truth – that care for the dying is at its roots a communal activity and responsibility. 

It is not hard to imagine the value a volunteer can bring to the care of the dying.  They can help with all the nitty-gritty work that needs attention, whether it be feeding, cleaning, or envelope stuffing.  Beyond these very important details, the volunteer is able to do some things that neither the family nor the professionals can do.  Sometimes, for the dying person, the family is too close and the professionals too distant.  The volunteer can provide perspective to patients, families, and clinicians precisely because they are betwixt and between – not dying, not family, not professional, but still important members of the tribe with a vested interest in the unfolding drama. 

One hundred years ago, wisdom in the care of the dying was gained at the family bedside and shared through communal service.  Today, much of this wisdom has been lost through the medicalization of dying.  One of the great benefits of the hospice movement has been a reclamation of this tradition of service.  Families and volunteers are critical not only to the care of individuals, but also to the rebuilding of this communal wisdom, through shared stories and experiences.

Of course, the best way to participate in this process is to volunteer and learn through experience.  Volunteers (and families) may also be aided by some books that address hospice volunteering.  Here, I’ll recommend two: When Autumn Comes – creating compassionate care for the dying, by Mary Jo Bennett, and At Home With Dying – A Zen Hospice Approach, by Merrill Collett. 

The second edition of When Autumn Comes has just been published.  This book revolves around individual stories of volunteering by the author.  Bennett shares her own inner struggles and practical advice for caregivers.  For example, volunteers are inevitably drawn into the dramas of their patients and families.  A challenge for all caregivers is how to participate authentically and yet still be aware of certain role boundaries. Like so many volunteers, her journey began with a personal loss, as recounted in the book’s first chapter.  At Home with Dying takes a different approach. The author, a student of Zen Buddhism, volunteered at the now famous Zen Hospice Project.  The book moves freely from discourses on spiritual aspects of caregiving to very practical advice, as epitomized in the chapter title, The Tao of eating and elimination.  While grounded in the spiritual practice of Zen, the nature of the commentary and advice would be valued, I think, by folks of other spiritual persuasions.

In summary, I’d like to say thank you to all the great people who have taken the time to volunteer (in hospice and elsewhere).  Your actions really make a difference and give me hope for the future.

Tube feeding -'The times they are a changin'...

Last month, a task-force of gastroenterologists published an excellent review article on tube-feeding in a major GI journal, Gastrointestinal Endoscopy.  (DeLegge MH, McClave SA, DiSario JA, Baskin WN, Brown RD, Fang JC, Ginsberg GG . Ethical and medicolegal aspects of PEG-tube placement and provision of artificial nutritional therapy.  Gastrointest. Endo.  2005; 62(6): 952-959) I was honored to be asked to write an accompanying editorial, which is available free at: http://journals.elsevierhealth.com/periodicals/ymge  (Unfortunately, the far more important review article is not free, but may be ordered or available through your medical library.)  In recent years, a number of studies, well referenced in the review, have demonstrated little or no benefit for tube feeding for many patient groups with advanced illness.  Most specifically, studies have generally failed to demonstrate a benefit for tube feeding in patients with advanced dementia by almost any measurable criteria – length of life, quality of life, or prevention of aspiration pneumonia.  Those of us working and writing about tube feeding in the field of palliative care have taken a fair bit of flack on this issue for understandable reasons.  Feeding and nurturing are at the core of our basic human values.  Legitimate ethical controversies exist regarding when to start and stop artificial feeding.  However, I believe these debates will best be served if they are informed by a thoughtful review of available evidence, as provided in the task-force's article.  While many of the findings in this review will not surprise professionals working in hospice or palliative care, the importance of the review is that it was performed by gastroenterologists and reflects, I think, some serious soul-searching on their part.  If, as available (but admittedly far from perfect) evidence suggests, there is limited utility for tube feeding for patients with many chronic illnesses such as advanced dementia, what implications does this have for gastroenterologists, who are often asked to insert these tubes?  Are gastroenterologists just technicians, whose job is to insert tubes?  Do they have any professional or moral responsibility to comment on whether tube feeding will likely help patients, families and clinicians meet certain goals of care?  I suggest in my editorial that the answer to this latter question must be, yes.  Probably a Freudian slip, but in the text of my editorial I mistakenly wrote, “Periprocedure morbidity and morality of PEG-tube placement appears to be a minor factor in most cases, as the investigators suggest.”  Of course, I meant periprocedure mortality, which is indeed usually a minor concern.  Periprocedure morality should never be a minor factor. 

I view the publication of this article optimistically.  The task-force is really to be commended for taking the issue on.  I also see as a good sign the journal’s kind invitation to ask a palliative medicine physician to write an accompanying editorial.  This is a sign our growing acceptance as a medical specialty.  Yessir, the times they are a changin’ and in this case for the better.

Cultural Blind Spots

The Hasting Center, the leading bioethics organization in the United States just released a special report entitled, Improving End of Life Care – Why has it been so difficult. Link to Hastings Center Special Report   Contributors to this report include Daniel Callahan, co-founder of the Hastings Center, and Joanne Lynn, among other luminaries.  It’s a worthwhile read.  The consensus reflected in the articles seems to be that leaders in the field have relied too much on untested assumptions.  In particular,  the focus of much early advocacy (1960’s-mid 1990’s) for better care focused excessively on the role of medical ethics in general and more specifically the primacy of the ethical principle of autonomy.  Later studies, in particular the now famous SUPPORT study, appeared to show the impact of such a narrow focus on ethics was far less than had been hoped for or anticipated. In their article, "The quest to reform end of life care: rethinking assumptions and setting new directions," Murray and Jennings provide a nice summary of conclusions:

·        Our approach to end of life decision-making has been excessively rationalistic

·        Our approach to end of life decision-making has been excessively individualistic

·        Our approach to end of life decision-making has been based on what may be a misdiagnosis: we have assumed that inappropriately aggressive and unwanted treatment at the end of life is fundamentally a problem of prognostic uncertainty and poor communication

·        We should approach end of life care from more of a policy- and population-based perspective, not simply from a clinical one

·        We should reevaluate advance directives and surrogate decision-making

·        When conflicts and disagreements arise within families, independent mediation and conflict resolution services, including pastoral counseling, should be readily available in health care institutions

That the prestigious HastingsCenter on behalf of the field of bioethics has come forth with a mea culpa in this regards is a big deal in my opinion.  I would have preferred to see a bit deeper reflection on why it took in excess of 25 years to figure out that the narrow focus of medical ethics needed to be shifted.  To my read, they do hint at what I believe were cultural blind-spots that prevented folks, including me, from seeing what might otherwise have been obvious.  One blind spot seems to be that the excessively rational and individualistic approach to problem solving noted in the articles reflects our Western, predominantly Northern European traditions, which place a higher value on abstract thoughts and concepts than on human relationships. 

Following the SUPPORT study, the emphasis in the palliative and end of life care movement has shifted to attention to systemic aspects of care.  The question has become less about individual decision-making than how can we  might change the system to improve the chances that people will get better end-of-life care.  The early returns suggest that this approach has been more effective in improving overall care.  Personally, I have very much been part of this recent wave of activity, working largely with the Department of Veterans Affairs to improve care by advocating for things like more palliative care consult teams and dedicated palliative care units.  However, I suspect we too have a cultural blind spot.   My worry is that we risk overly bureaucratizing palliative care, as we have bureaucratized so much of the rest of our lives.  Not that we don’t need more effective organizational structures for the provision of good care, but I think we Americans are congenitally prone to excess.   We have made great strides in recent years in the palliative care movement, but we may be approaching a time where we would be better served by pausing and reflecting on what has worked and what has not, rather than dashing ahead with bold new ideas.    As the old adage goes, sometimes its best not to do something, but to just sit there. 

Fallen Leaves

I thought readers might be interested in the following reflection, which I offered at this year's annual KARA convention in the Spring.  KARA is a wonderful grief support group in the Bay Area, with roots going back to 1976 (within one year of the first hospices in America).  Our VA hospice program has worked closely and collaboratively with KARA for many years. They have been of special help in offering support to bereaved children.  Link to KARA website

I think back to a KARA conference some years ago. The presentations were moving, leading me to a deeper contemplation. When a break came, I took a stroll in the hotel garden. The sky was bright blue and the flowers so fresh. A small stream ran through the perfectly manicured grounds. I thought back to a talk I had read by the Thai Buddhist teacher, Ajaan Chah. In it he commented that in nature life and death exist in balance. In the forest our eyes may be drawn to the bud or the flower, but if we pay attention we also see the withered leaf on the stem. The forest floor is littered with last year’s glory and it is here that new life finds its soil. The process of birth is not separate from dying. Joy, not separate from sorrow. 

The hotel garden, through which I walked that day was beautiful, but it was also incomplete. Swept away were the dead leaves and the dirt.  The soil lay hidden under a finely cropped lawn.

It is, I suppose, our nature to be drawn to the beautiful, to the young. Our gardens reflect this selective vision. But somewhere, we are ill at ease. Like an itch we cannot quite scratch, we sense imbalance. 

How like our human world. We rejoice, rightly, at birth. We celebrate when people come together in love and cheer their common dream. And yet somewhere, we know. We know that however wonderful, this flowering too cannot exist separate from inevitable decline. In speaking of the cycles of the moon, Carl Jung said, “Waxing and waning make one curve.” One curve, not two.

Ajaan Chah wrote, “Sometimes, when a fruit tree is in bloom, a breeze stirs and scatters blossoms to the ground. Some buds remain and grow into a small green fruit. A wind blows and some of them, too, fall! Still others may become fruit or nearly ripe, or some even fully ripe, before they fall. And so it is with people. Like flowers and fruit in the wind they, too, fall in different stages of life. Some people die while still in the womb, others within only a few days after birth. Some people live for a few years then die, never having reached maturity. Men and women die in their youth. Still others reach a ripe old age before they die.”

Whether we like it or not, we too are part of this natural world, however much we tend our tidy gardens.

But we must beware the limits of metaphor. When flowers fade and leaves fall, I do not think the emerging blossoms grieve the loss. It is our human nature that the joy of birth and coming together is balanced by sadness when we part. The fallen leaf in the garden takes no offense, when raked out of sight. The old, the sick and the disabled, while certainly part of natural order of things are not fallen leaves. They should not swept up and hidden behind some garden shed. They suffer and we suffer and it is also part of our human nature that we reach out and care for them.

I think you get where I’m going with this. I do not know about you, but I am concerned. I’m concerned that in our building of a modern world preoccupied with youth, beauty, and power, we are neglecting an ancient wisdom of the forest. And we do so at our peril.

So it is good that we come together periodically in this way to reflect on our common humanity. This is in accordance with our nature. We celebrate and we laugh. We grieve and we cry. Hard though it may be at times, in a fuller circle, we find ourselves, more complete. In this we find some solace and some space for blossoms to bloom.

Palliative Care Journal Club

Physicians-in-training have a peculiar ritual called, "Journal Club."  The idea is a good one - a group of physicians get together periodically to discuss some article of common interest.  Often, a junior trainee, medical student or intern, attempts to critique the article, while senior faculty critique their critiques.  In practice, the ritual is often a deadly bore.  Its not really a club (the term implies voluntary membership and participation is usually anything but voluntary).  The "clubs" often meet at inconvenient times, like dinner time, and the focus is excessively on journal articles.  So if I'm not exactly a fan of "journal club," why am I writing about it?  Because the idea is still basically a good one - if it is expanded somewhat and if the process is stripped of some of its more staid (boring and educationally problemmatic) aspects.

RELEVANCE TO PALLIATIVE CARE:  There is all sorts of great stuff out there of relevance to palliative care.  For scientific studies, of course peer-review journal articles are very important. However, journal articles are like sound-bites - they tend to focus on very specific issues, but not the bigger picture.  If you read only journal articles, you will never see the forest for the trees.  I'll go out on a limb and state that the most important reading I've done in palliative care is NOT in journal articles, but in books, where more complex ideas can be explored in some depth.  Sadly, many busy young clinicians, especially doctors, are getting the message that ONLY journal articles are important.  Go ahead - check it out.  Ask a physician when was the last time he or she actually read a book related to their field.  You may be surprised at their answer.  For many critical topics in palliative care, particularly as relate to cultural or social aspects of illness, and death and dying, even books may not be the best place to go.  For example, if seeking information about a particular ethnic group and how they deal with dying, a GOOGLE search or Growth House/IICN Mega Search Web Page for Accessing the IICN Mega Search of the Internet is far more likely to yield results than a search of MEDLINE or PUBMED.  For some topics relating to culture, you have to explore the culture directly.  Other media such as film and song are rich sources for such material.

Our VA fellowship in palliative care, for which I am the hub-site director is unusual in that it is interdisicplinary. VA Interprofessional Palliative Care Fellowship Web Page  That is, we train not just physicians, but nurses, psychologists, social, pharmacists and chaplains at our six training sites.  (Not all sites have all disciplines.)  In support of this fellowship I created 49 journal club "modules" on topics I thought ought to be of interest to our fellows. (The modules can be accessed at: VA Nationwide Palliative Care Network) The challenge in doing so was to find topics (and related material - articles, books etc.) of trans-disciplinary interest.  In the modules, I make some comments on the topic/material and at the end offer some "food for thought," in hopes of stimulating further interest on the part of the trainee.  I also tried to expand the scope of "journal club" to include material other than journal articles, such as books or film.  (For copyright reasons actual copies of referenced articles could not be provided.)  Below, is module/article # 40 on "Death and Dying at the Movies" an example of trying to get beyond the standard journal club format.  This particular topic implies an additional educational method that could be used:  a DVD of any of the referenced movies could be passed among trainees for viewing at home with "study-guide" questions.  The "journal club could then be a forum within which trainees discuss the movie, using the study guide questions.  We have done this, for example, with Field of Dreams.   

FROM: PALLIATIVE CARE JOURNAL CLUB, JAMES HALLENBECK AVAILABLE AT: VA Nationwide Palliative Care Network

ARTICLE 40  Death and Dying at the Movies

We live in a culture that is increasingly visually oriented. Most Americans spend considerably more time watching TV or movies than reading. Whether this is good or bad, I cannot say. However, in our palliative care teaching we can and should use this to our advantage. Incorporation of video or film into our curricula can significantly enhance learning. The viewing of films is a superb (and often painless) mechanism for self-study. This week I will discuss the use of video and film in palliative care education.

A while ago I had the honor of presenting at an End-of-Life Nursing Consortium (ELNEC) training conference, sponsored by our facility. ( ELNEC Web page) Video presentations from the TNEEL curriculum (available at: TNEEL) were included. Video clips like those available through TNEEL are particularly useful for teaching communication skills. The EPEC course has some wonderful videos available. In the Plenary 1 video, The Stories We Share, EPEC leaders “confess their sins,” - talking about mistakes they made in the past because, simply, they did not know any better. (This form of self-disclosure is an important educational technique in palliative care. In pointing out the many problems that exist, PC educators can appear “holier than thou,” alienating learners. Self-disclosure of our own mistakes helps us establish a bond with learners and makes the point that the issue is not “good” or “bad” clinicians, but common educational deficiencies.) The Plenary 3 video of EPEC stars Dame Cicely Saunders herself, in an amazing interview. Both plenary tapes are “must-sees” for PC folk. Shorter vignettes accompany specific modules - some better than others. My personal favorite is the clip of “Maggie,” being interviewed by Dr. von Gunten for the non-pain symptom module. This is a real, non-scripted interview. While Dr. von Gunten uses the interview to highlight particular non-pain symptoms, he also displays masterful communication skills in this clip. I frequently use it to highlight certain communication techniques such as mirroring.

Commercially available movies also have much untapped educational potential. Movies can be shared among learners and then discussed, as in the traditional “journal club.” Short clips from certain scenes may be very effective in highlighting educational points. I have kept copies of certain movies at our unit, which can be checked out by learners for home viewing. Included with the movie are “food for thought” questions to stimulate self-directed learning. Below, I will briefly discuss some of my favorite movies. By no means is this an all-inclusive list – I am just trying to wet your appetite for the use of this approach (and hopefully turn you on to some great films).

Films about the Afterlife:

What Dreams may come, 1998. Director: Vincent Ward, starring Robin Williams. This movie is representative of a particular genre of film that explores the big question - what happens after we die? Without giving too much of the film away, after his death Robin Williams finds an afterlife that blends impressionistic imagery from Monet with Dante’s inferno. This film is particularly useful in addressing questions of complicated bereavement and suicide. For me the value of films dealing with the afterlife lies in what they reveal about our changing society. The issue is less “what happens after death,” than what the great mirror of death reflects about our society and its values. This film highlights some common themes I have often observed in other recent films:

· The disappearance of hell as a state separate from the individual’s state of mind. This film does include a hell, but hell is interpreted more as a projection of the suffering of individual souls than an externally imposed punishment. This concept of hell, to the extent it still exists, reflects Eastern religious influences.

· God, if present, is not actively involved. God rarely makes an appearance. Indeed, in many such movies, virtually no reference is made to God. God, if referenced, is a distant figure, creating rules that must be interpreted by others - angels, who increasingly take on modern, bureaucratic responsibilities. (The movie, Michael, starring John Travolta, portrays Archangel Michael, who historically was understood to be the angel who weighed people’s souls to determine who goes to heaven and who to hell. Travolta’s Michael is a pot-bellied drunken slob, suggesting this angel experienced a serious fall from grace.

· Heaven, in contrast, is still very popular. Heaven too is increasingly seen as a projection of mind, rather than a place separate from the individual. (See also the recent, popular book, The Lovely Bones, by Alice Sebold, for a similar approach. This is also a great book for considering the complexity of bereavement following traumatic, violent death.)

· Eastern philosophy is subtly being incorporated into concepts of the afterlife, particularly ideas of karma and reincarnation. Heaven and hell as projections of mind are examples of “karmic” Eastern influence. Reincarnation (present in this film) is also explored symbolically in variations of the movie, Heaven Can Wait. (Heaven Can Wait is also an early example of the portrayal of angels as corporate bureaucrats, who can make mistakes.) The Christmas favorite, It’s a Wonderful Life, 1946 starring Jimmy Stewart, similarly explores the karmic implications of a life well-lived. In “Clarence,” the angel in the film we see an interesting example of a “transition angel” - still some angelic qualities, but also early “bureaucratic tendencies - angels must earn their wings.

Defending your Life. 1991. Director: Albert Brooks, starring Albert Brooks and Meryll Streep.

This comic-drama parodies the image of “heaven” as a projection of modern society and angels as bureaucrats, whose job is to administer rules. To the extent the rules of this afterlife are explained they include:

• People are reincarnated until they learn to “face their fears,” whereupon they are allowed to “move-on” in terms of cosmic evolution. (The notion of death as an evolutionary phase is an interesting and historically rather novel one.)

• No references are made to God or why the rules are what they are.

• An overt statement is made to the effect that “there is no hell.”

• Difficult problems like childhood deaths are explained away, saying that children “automatically move on.”

I really like this movie, but also find it disturbing. Why, for example, is the key issue in the evolution of human consciousness facing one’s fear? (Did this movie presage the horrible TV show, Fear Factor?) As modeled by Meryll Streep, the film implies that something deeper is involved - transition of self through selflessness. However, the film stops short of being explicit about this, perhaps because challenging the importance of self-control (a major bug-a-boo for many people) would be too scary and would be, frankly, not funny.

The Afterlife. 1999 Director Hirokazu Kore-eda. This Japanese film with subtitles may be hard to find. It is a beautiful film, demonstrating remarkable cross cultural similarities in struggles with fundamental issues, while subtly suggesting some special concerns with which Japanese struggle. For example, in this film the recently departed actively question the seemingly arbitrary rules imposed by bureaucratic angels.

Films about Dying: The other major genre to highlight here are films overtly about dying. In Gorer’s Pornography of Death, he lamented the disappearance of death-bed scenes. It appears to me, however, that films relating to dying are becoming increasingly popular.

The Doctor. 1991 Director Ronda Haines. Starring William Hurt. In this film the archetypical surgeon develops cancer and comes to understand how different the experience of illness is from the perspective of the patient. While somewhat maudlin for my tastes, this film is great for promoting self-reflection in clinicians. The film can also be used to extract vignettes of how not to relate to patients that can be used in skill practice sessions. (For example, the surgeon almost comically rushes into a patient room, late, makes no eye contact with the patient, but only stares at the chart and rushes out again.) When the surgeon receives similar treatment we again see hints of karma (what goes around, comes around, as ye sow, so shall ye reap). (For a great book on the role of doctors in film, see Peter E Dans’ book, Doctors in the Movies; boil the water and just say ah. Dr. Dans is the father of one of our palliative care fellows, Maria Dans.)

Ikiru (To Live) 1954. Director Akira Kurosawa. This famous movie by the great Japanese director Kurosawa explores the experience of an older Japanese man, almost a Japanese Scrooge of shorts, who learns he has cancer. Through his terminal diagnosis, he is liberated and finds, for the first time that he can live (ikiru). As is typical for many films in this genre, protagonists learn that growth can happen through the process of dying.

The Pride of the Yankees. 1942 Starring Gary Cooper (and the real Babe Ruth). I recently saw this 1942 movie (nominated for 11 academy awards) about the baseball hero, Lou Gehrig. Most of the story is about a rather typical American hero, who never quits (Lou Gehrig was famous for playing more than 2000 consecutive games). The scene that is most memorable for me is when Lou Gehrig learns he has Lou Gehrig disease (ALS). By today standards, the doctor does a rather terrible job of sharing bad news, stares at x-rays etc.. Gehrig (Cooper) then launches into a wonderful example of metaphorical communication, paraphrased below:

Gehrig: Give it to me straight doc, is it three strikes?

Doctor: Yes, its three strikes.

Gehrig: Well, I learned never to argue with the umpire….

In a manner that now seems antiquated, Gehrig then asks the doctor and his father-in-law not to tell his wife the terminal diagnosis. This is accepted as a matter of course. Gehrig’s wife then walks in and all join in a poorly disguised deception. Gehrig and the doctor then leave. Gehrig’s wife, then cries on her father’s shoulder, asking “How much time does he have.” “How did you know?” the father asks. “I could see it on your faces,” she replies. Then, she gets into the act. “Of course, I won’t let Lou know that I know.” This form of “knowing without saying” was termed closed awareness by Glasser and Straus in their famous book (Glaser, B.G. and A.L. Strauss, Awareness of dying. 1965, Chicago,: Aldine Pub. Co. xi, 305. Glaser, B.G. and A.L. Strauss, Awareness of dying. 1965, Chicago,: Aldine Pub.Co.). This scene is fascinating in that I think this was an accurate representation of standard practice at that time. Such closed awareness seems now more the exception than the rule.

Star Wars. My all time favorite work related to death and dying is Star Wars (the original trilogy, not the recent add-ons). I suggest you re-watch the trilogy through a special lens. Imagine that the entire film is a metaphor for the training of a palliative care physician or other PC clinician. Luke Skywalker is the initially reluctant learner, who (finally) understands his true calling. Three deaths serve to instruct him. The first, is the death of his early teacher, Obi Wan. This is a classic warrior hero death. The second death, of master Yoda, is a peaceful “home hospice” death. The third, of his father, Darth Vadar, symbolically represents the death of the patient, now dependent on medical technology, in which the patient, as Vadar point out in his death scene becomes “more machine than man.” (For a classic discussion of heroic archetypes, see The Hero with a Thousand Faces, by Joseph Campbell.)

Food for thought:

· What movies might you add to the list I have started above?

· Consider picking one or two movies you find interesting. How could you use these in education? Why not give it a try?

· Above, I have suggested the evolution of a number of themes - the disappearance of hell, for example - which occurred in particular historical contexts. These contexts did not begin with advent of motion pictures. How do these themes relate to the broader histories of both illness and religion in society? For example, as a more focused question, what were the historical origins of the de-emphasis on hell in Western civilization?

· How does visual imagery and sound in film change messages as relate to death and dying as compared to writing in novels or poetry? What is gained and what is lost?

Disclaimer: The views expressed above are those of the author and do not necessarily reflect the opinion of the Department of Veterans Affairs