James Hallenbeck, M.D.

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

Status of Nursing Home Care in California

A new "snapshot" report on the state of California nursing homes has been published by the California Healthcare Foundation. This report suggests at least in this state there is cause for concern. Link to the California Healthcare Foundation  See attached PDF of the report:

Download FragileNursingHomeIndustrySnapshot2005.pdf

WHY SHOULD THIS BE OF CONCERN TO THOSE OF US IN PALLIATIVE CARE?

It is increasingly likely that Americans will spend some time in a nursing home prior to death and that more of us will likely die in nursing homes.  If this is news, it probably is not welcome news.  The reasons for this are complex, but relate to an aging population (baby boomers coming 'on-line' as elders), gender roles (women less likely to accept caregiving roles at home because of dual incomes etc.), and geographic dispersion (children moving far from parents etc.)  Nursing home deaths will likely rise to greater than 40% of all deaths from the current 25% over the next decade or so. 

Despite what has been called the "demographic imperative" driving a need to build nursing home capacity, in many regions (definitely in California) there has been virtually no growth in nursing home capacity in our state.  As outlined in the report, currently 45% of all California nursing homes are running in the red - not exactly a great recipe for growth.  If, as I would predict, demand soon exceeds capacity, a number of bad things will likely happen (and likely are already happening sporadically):

1.    Nursing homes will "cherry-pick" for high paying, medically straightforward patients.

2.    Other, less desirable patients (poor, medically complex, the dying) will "stack up" in other venues, unable to admit their patients.  Families (and hospices) struggling with a a family member at home may have little option but to to struggle a little harder and longer or.... Have their loved one admitted to an acute care hospital, where they will similarly "stack up" waiting for a nursing home bed.  The result will likely be systemic "impaction," which will, in the long run, cost all of us a lot of money and a great deal of anguish.

3.    Dying patients in nursing homes are somewhat more complex and need special attention.  If the system is stressed, as the current report strongly suggests, it seem probable that the quality of care dying patients who do manage to get into nursing homes will receive will likely fall.

Personally, I would peg my odds of dying in a nursing home (currently being 52) at roughly 50-50 in my lifetime.  Already, my odds of receiving some care in a nursing home prior to death are greater than that (about 65%).  Given this and similar reports, I'm worried about the type of care I might receive.  It is probably safe to guess that most of us hope we will avoid nursing homes in our old age - I certainly do.  But would our attitudes toward nursing homes change if we viewed the possibility of nursing home care for what it may in fact be, a probability?  Perhaps then as a culture we would get serious about building a nursing home culture which is true to the mission implied in the term - a home where we could be kindly and respectfully nursed.

So for readers - don't know how things are going in your neck of the woods, but here's the progress report from sunny California:

Key findings 2003 data (copied from summary of Snapshot report):

• Only a small percentage of the state’s freestanding nursing homes meet the standards recommended for staffing levels to provide good nursing care.

• Continuing high staff turnover threatens quality of care. More than two-thirds of the nursing staff in

  California’s nursing homes left their jobs in 2003.

• Many residents show clinical signs of poor care as a result of being left in bed all or most of the time, or being placed in physical restraints.

• Most nursing homes do not meet government compliance standards for care and safety. Fifteen percent of homes were cited for very serious quality of care problems or substandard care, which causes harm or jeopardy to the health of residents. Some 77 percent had serious noncompliance with federal care and safety regulations during their most recent mandatory inspection.

• Half of the state’s nursing homes reported negative or zero profit margins.

COMMENTARY ON REPORT:

The findings of poor quality of care are obviously concerning (especially for all of us who live in California. 

I would highlight a few specific findings:

· Only 5% of nursing homes meet CMS (Medicare and Medicaid) staffing guidelines of 4.1 hours per patient day. 24% of nursing homes had less than 3.2 hours per patient day.

· Use of physical restraints (15%) is more than twice the national average (7%)

· 88% of facilities were found to be in either serious or very serious non-compliance with federal care and safety regulations on their last inspection. (Only 8% of facilities found to be in compliance or substantial compliance.)

The document also demonstrates that over 2 years (2001-2003) the number of facilities with either zero profit or a negative profit increased by 30%. Currently, 6% of nursing homes showed no profit and 45% were in the red. While not included in this report, prior projections (predicting exactly what happened – an increasing number of nursing homes running in deficit) are for decreases in the number of nursing home beds (capacity), as nursing home companies pull out of the state (or the business) at the same time demand for beds will increase with the baby-boomer generation coming on-line. This bodes poorly for future nursing home capacity in California.

National Consensus Project - Guidelines for Quality Palliative Care

Recently, the first national guidelines for the provision of palliative care in the United States  were published by a group called the National Consensus Project for Palliative Care. http://www.nationalconsensusproject.org/ The guidelines reflect a consensus among palliative and hospice care organizations and champions as to what palliative care is.  The guidelines build upon pre-existing guidelines for hospice care.  A major challenge in the guidelines is to delineate palliative care from both hospice and traditional medical care.  If, as the guidelines state, "The goal of palliative care is to prevent and relieve suffering and to support the best possible quality of life for patients and their families, regardless of the stage of the disease or the need for other therapies," then palliative care is or should be a component of care for all who are sick, whether in hospice or the hospital.  Personally, I do not view these guidelines as a definitive answer to the question, "What is palliative care," but I do think the guidelines represent an important step in a process of evolution.  Historically, the term, palliative care, was "created" by Dr. Balfour Mount in Montreal, when, upon returning from work with Ciceley Saunders, he sought to establish a hospice-like program in Canada.  However, as an accident of history, it is said that he felt he could not use the term, hospice, as this word, then an archaic term in English, still apparently meant something like, 'alms house for the poor' in French.  Thus, extrapolating from palliative chemotherapy (or radiation), he came up with, palliative care.  I think this story is important because it suggests that, originally, palliative care was really a synomym for hospice.  However, since then the term has undergone rapid evolution - or at least change.  A number of definitions have linked palliative care with care for patients with "serious, potentially life-limiting illness."  The clear, and reasonable implication is that it is not just the imminently dying who wished to be relieved of suffering in their illness.  Thus, palliative care was promulgated as care which built on hospice philosophy (relief of suffering, patient and family centered), but moved the focus of care "upstream."  The Consensus Project definition, which I rather like, takes the definition one step further in their wording to include virtually all patients.  Philosphically, this makes sense to me; I want to be "palliated" even when I have a cold.  However, there is some risk of the definition becoming so diffuse as to be almost meaningless.  Already, we frequently encounter clinicians and healthcare organizations who state that they do not need palliative care, because they already have palliative care- by which they mean they pay some attention to suffering in their patients.  It is precisely in such situations that the Guidelines may be useful.  For the Guideline definition goes on to state, "Palliative care is both a philosophy of care and an organized, highly structured system for delivering care (Italics mine).  While it is, mercifully, true that virtually all clinicians incorporation some degree of palliation into their care, it is also sadly true that many healthcare organizations do not currently have a structured palliative care program in keeping with the Guidelines.

I recommend that clinicians and healthcare organizations download and review the guidelines and use them as a benchmark against which to evaluate their own systems of care.  The guidelines may also be of help to consumers of healthcare (i.e. all of us), who may have heard the term, palliative care, but are fuzzy as to what it means and what benefits their might be to having palliative care involved.  It would be absolutely wonderful if patients and families, armed with the Guidelines, asked their providers and the healthcare organizations in which they are receiving care if formal palliative care services, as outlined in the Guidelines, are available.  And if not, why not? 

A copy of the Guidelines is available here for download.

Download national_consensus_project_guidelines.pdf

TEN SIMPLE THINGS YOU CAN DO TO ACCESS HOSPICE AND PALLIATIVE CARE RESOURCES

See attached htm file, which contains a list of resources/links, which can help individuals or programs access resources related to palliative care. The file is adapted from handouts I distribute through the Hospital Based Palliative Care Consortium (HBPCC) http://www.hbpcc.org/, of which our program is a member.  Hospitals seeking to develop or expand their palliative care programs can visit an HBPCC site and receive tailored assistance.  See the above website for more information about HBPCC, if interested.  Download ten_things_resource_list_8.5.pdf

PROFILE AND PURPOSE

I am an Assistant Professor of Medicine at Stanford University in the Division of General Internal Medicine. Currently, I am the Associate Chief of Staff for Extended Care, director of palliative care services at the VA Palo Alto Health Care System and hub-site director for the VA Interprofessional Palliative Care Fellowship program. I am board certified in internal medicine and hospice and palliative medicine. My major interests in the area of palliative care include education, cultural and social aspects of end-of-life care and non-pain symptom management. My current research focuses on system issues within the Department of Veterans Affairs related to the provision of hospice and palliative care. I am the author of the book, Palliative Care Perspectives, published in 2003 by Oxford University Press, available online in its entirety through Growthhouse at. http://www.growthhouse.org/navigate/fs1.html.

I am new to the blogging world. Thus, this is very much a work in progress. Through this site I hope to reflect on topics that might be of interest to readers with similar interests. I look forward to sharing, in a less formal way than is possible through published works, writings, presentations, and musings about palliative care. I also hope to draw attention to notable events, website, articles, and books - especially those at risk of being overlooked. 

DISCLAIMER: I am an employee of the Department of Veterans Affairs (VA). The opinions expressed by me on this site are mine alone and do not necessarily reflect the policies or opinions of the Department. Given that much of my work has been dedicated to improving care for veterans at the end-of-life, I will comment on issues related to the VA. My intent in doing so is to broaden awareness of issues related to the care of veterans. 

I count myself extremely lucky to have found my way as a physician to palliative care, when I did. I am amazed and encouraged by the growth of the field over the past decade. And yet, I know we have a lot of work ahead of us. Far too many people with advanced and terminal illnesses are suffering unnecessarily. This and similar efforts across the Internet are interesting experiments in communication, which hopefully will broaden and deepen the dialogue about how we might be of some help in improving the collective quality of our lives. This blog is one small effort toward this greater goal.

Jim Hallenbeck