James Hallenbeck, M.D.

Palliative Care and the Cult of Cure

In 2003 the American National Consensus Guideline project defined palliative care as that aspect of Medicine that works to relieve suffering and promote quality of life.  That’s fine, as far as it goes, although the definition includes a lot of territory – everything from a nasal spray for a stuffy nose to morphine and spiritual support.  So it might be worth asking, what is not palliative care?  Often care focusing on cure or life-prolongation is invoked as representing “traditional” (non-palliative) medicine.  Discussions about the relationship between palliative and non-palliative care rightly note that these two aspects of care can and often should operate synergistically.  Begging the obvious – it is not just the dying who wish not to suffer in illness.  However, there is still something about this palliative/non-palliative dichotomy that bugs me. 

 

In my more extreme moments, I have ranted about what I have labeled the cult of cure.  This “cult” takes a truly radical position.  The apparent goal of this group is to cure – everything.    All disease would disappear.  Presumably, even old age and death would be vanquished.  Like the fairy tale, the goal apparently is to live “happily ever after.”  While this makes a nice fairy tale, it is hard for me to imagine how such a world would work. One could argue that this belief system represents the driving ethos of Modern Medicine.  It is cult-like not in its size, but in its stubborn refusal to hold up for reexamination its doctrine to the clear light of reality.  It is also cult-like in its lack of balance.  By focusing excessively on cure, other aspects of medicine and healing have been sorely neglected.  Disciples of the cult of cure are not completely insensitive to the problem of suffering in illness.  However, they are blinded by a magical belief that IF we can just cure everything, then suffering will disappear.  The evidence is overwhelming that so far we have not succeeded in doing so.

I go on like this, because I am struggling to understand why the balance in our medical system has been tipped so far to the extreme of cure and away from alleviation of suffering as a primary charge of healing.  I do not believe it is because physicians and other clinicians are bad people.  Quite the contrary.  They care deeply.  However, I believe that something bordering on a mass psychosis is at work.  Despite the great advances of medical science, the mortality rate remains what it has always been, 100%.  At best, we can prevent certain ways of dying, so-called pre-mature deaths, but always at the cost of creating new illnesses and different ways of dying.  That is not a terrible thing.  It is very good that we have radically reduced infant mortality due to gastroenteritis, for example.  But even good things have their consequences.  Even very good things like seatbelts are “carcinogenic.” Decreasing the chance of dying one way (auto accidents) must to some degree increase all other causes of death.  The problem is that as a society we are largely ignoring the inevitable “side-effects” of our medical advances.

 

Another tragic consequence of a cult-of-cure mentality is that we will inevitably be defined by failure, because success (immortality) is always beyond our reach.  The obituary may honor the departed for a “valiant battle with cancer.”  Left unsaid is that the battle was lost.  In our hospice, I sometimes overhear staffing say things like, “Mr. Smith?  Oh, he is not doing well.”  What they mean by this is usually that Mr. Smith is progressing in his dying.  Mr. Smith may otherwise be doing quite well, thank you.  But his health is…failing.  But does it have to be this way?

 

Arthur Kleinman, psychiatrist and anthropologist in his book, Writing at the Margin, compares our Western biomedical system to that of other world systems of healing.  He notes that virtually all other medical systems take relief of suffering as a priority in healing.  World systems (including antiquated Galenic medicine  in the West) also understood health and illness as issues of balance, not of cure (success) or non-cure (failure).  The Chinese Yin-Yang system serves as an example.  He also noted that most medical systems do not narrowly construct illness as occurring only in individual bodies, but as events with social, cultural, and environmental components and contexts.  Reading this helped me understand the great challenge we who work in palliative care have before us.  We take the family as the unit of care.  Suffering is a primary, not secondary concern for us and, while rarely stated this way, much of what we do in helping relieve suffering and promote quality of life relates to helping people find an optimal balance - given their circumstances. 

 

So, finally, let us return to the initial question of palliative and non-palliative care.  What I think (or hope) palliative care is doing as a social movement is to question the win-lose tenets of a cult-of-cure philosophy.  I think we need to redefine health, not as the absence of disease, but as an optimal balance, given the circumstances.  In some cases, finding this balance will mean effecting a cure.  If a wayward pneumococcus finds its way to the lungs of an otherwise healthy person, finding an optimal balance will probably involve treating the resulting pneumonia with antibiotics.  On the other hand such a redefinition would also allow us to consider the possibility that people can die “healthy.”  That is, given their circumstances (advanced disease) they can be optimally balanced in terms of symptom management and in terms of the psychological, social, cultural, and spiritual dimensions of their lives.  For me, this is not some fairy tale, because I have witnessed such healthy deaths.  I hope when my time comes I am half as healthy. 

 

Were we to have such a redefinition of health and illness, the current dichotomy of palliative and non-palliative care would seem, well, rather ridiculous.  What might the slogan be for such a redefinition of health?  Borrowing from the United States Army, I might suggest that to be healthy is to “Be.  All that you can be.”

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: https://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.