Walking The Dog: Incorporating Poetry To Help Learners Connect With Relationship-Centered Care

April 30, 2009 at 10:06 am

Satirical scene with doctor diagnosing well to-do man with Diabetes
Commentary by Johanna Shapiro, Ph.D., Professor, Department of Family Medicine and Director, Program in Medical Humanities & Arts, University of California Irvine School of Medicine

Theories of relationship-centered care

The concept of relationship-centered care (RCC) (1) and the related theory of human interaction designated Complex Responsive Processes of Relating (2) remain exceptionally fruitful ways of thinking about doctors and patients. Relationship-centered care includes attention to the personhood of both doctor and patient, as well as their respective roles; awareness of the importance of emotions in both the patient and the doctor; and recognition of the reciprocity of influences from both doctor and patient (and from the wider healthcare system and society itself) on the relationship itself (1,3,4). RCC challenges the notion of compassionate detachment and instead explores connection and engagement with patients as the most appropriate and moral foundation for relationship.

The theory of Complex Responsive Processes of Relating (2) highlights the nonlinear, reciprocal, and self-organizing nature of human interaction. It specifies that patterns of meaning and relating are co-created continuously throughout the communicative encounter; and that such patterns may repeat themselves, or due to the introduction of "novelty," may develop spontaneously in new directions. As Suchman writes, "the development of new patterns depends upon the diversity and the responsiveness in the interaction." (p. S42). In other words, encounters between doctors and patients that allow, even invite, variety and divergence from unprofitable patterns are most likely to evolve into more meaningful and more authentic ways of being in relationship, which ultimately serves patient well-being. This view acknowledges that patients as well as physicians exercise continually shifting power in the encounter; and therefore physicians have limited control in terms of outcomes.

Implications of RCC/CRPR for "noncompliance"

Although RCC and CRPR have implications for all aspects of the patient-doctor encounter, they are especially relevant in situations of perceived patient "noncompliance." Advances in social science research have helped challenge simplistic conceptualizations of adherence and compliance, in which doctor-patient communication consists of the doctor prescribing medication and the patient taking it. More recently scholars have introduced the term "concordance" to indicate the complex processes that must occur between physicians and patients in order to result in patient cooperation with the prescribed treatment regimen (5). For example, concordance implies an open exchange of ideas, rather than top-down orders, and focuses on both physician and patient values and priorities, rather than on those of the patient alone.

Nevertheless, walking the corridors of a contemporary hospital of clinic, one rarely hears reference to "lack of concordance." Chart notes still read, "Patient noncompliant with medication," with all the frustration and patient blame this term has come to imply (6). Neither do we often hear clinicians contemplating the implications of their diabetic patients' - or their own - emotional responses to their disease for the meaningfulness of future patient encounters; nor the applications of complexity theory to patient compliance. On these significant dimensions of interaction around diabetes care, as in so many other aspects of medical education, the gap between the formal and the hidden curriculum remains pronounced (7). In my comments below I will focus specifically on current attitudes of physicians and students toward the management of diabetic patients; and how the use of a poem can help learners clarify principles of RCC and CRPR that are pertinent to adherence/compliance dilemmas.

The frustrating case of diabetes

In the diabetic patient population, noncompliance is a widespread (and ill-defined) problem, with estimated rates ranging from 30-80%. The inability to "control" the patient, and therefore "control" the patient's blood sugar, is a source of substantial exasperation, even despair, among physicians. Yet one study (6) found that, despite physicians' awareness of the complex constellation of psychological and social factors that constitute obstacles to treatment, they routinely failed to address these issues in clinical encounters, relying on directive, one-way communications about numerical monitoring and outcomes. In other words, these physicians persisted in a linear, cause-and-effect, power-down communication model that ignored the complexity, emotionality (in themselves or their patients), spontaneity, and power fluctuations that occur continuously between doctor and patient. In another study of physician attitudes toward poor compliance in patients with diabetes, it appeared that doctors relied primarily on shock, pressure, and the threat of hospitalization to influence patients toward improved compliance, as defined by the physician (8).

Medical students as well can cling to the straightforward, linear models of communication that are often mistaken for patient education in the management of diabetes. Their focus (understandably, from their perspective as learners), is on diagnosis of the physical ailment. Once this is achieved, the rest seems easy to them: the doctor tells the patient what to do; and the patient, who naturally wants to recover, does it (9). One study noted that, in actual encounters with patients with diabetes, the most frequently reported challenge to student worldviews was how to achieve patient compliance (10). It does not require a great leap to expect that these students will likely become patronizing, directive, yet also despondent and frustrated physicians.

Poetry to the rescue?

While it is obviously crucial to help students rethink their assumptions about and gain insight into the relational foundation of medicine and the complex nature of communication, especially around the issue of compliance, the methods for doing so remain unsettled. By definition, RCC and CRPR are intricate, multifaceted constructs at variance with more simplistic mechanistic models of doctor-patient interaction, and this suggests that the ways of developing conversations addressing them must be versatile as well. Under these conditions, literature and poetry may well have a role to play in helping students develop more critical, self-aware thinking about relationship in general, and in particular about the process through which patients and physicians achieve concordance regarding drug and lifestyle regimens. To illustrate this point, I would like to consider John Wright's wonderful poem "Walking the Dog," (11) and how it clarifies and concretizes aspects of both RCC and CRPR, as well as complexifies students' thinking about patient compliance.

Walking the dog

In "Walking the Dog," a doctor looks at an old problem - an overweight patient with diabetes - in a new way. The doctor is frustrated - obesity and high blood sugars are killing his patient. He turns the problem over and over in his mind. What can he do? At last he has an epiphany - he will give his patient a little dog that she can walk, thereby providing her with much-needed exercise, that will in turn lower her weight and her sugars, and prolong her life. And, like the conscientious physician he is, he prescribes the puppy in a precise dosage: the animal must be walked twice a day!

At this point in the poem, the author (himself a physician) has already caught our attention. Prescribing a pet! This unusual approach helps students think outside the box in terms of innovative therapies. It also is an excellent illustration of the CRPR principle that patterns of meaning and relating are continuously created, and that while they may exhibit stability, sometimes new patterns arise spontaneously (novelty). At this point the students think they "get the message": treatment can involve something more than medication. Be bold, be daring! They can "tell" their patients to take a walk! They admire the physician for being so creative. But the author provides an additional twist (yet more novelty). To their chagrin, the students discover that the treatment doesn't work, at least not in the way the doctor thought it would. As it turns out, while the patient is delighted with her little puppy and cuddles it affectionately, it is her "lean" husband who "faithfully" complies with the prescription of twice-a-day dog walking. Twelve years later, happy but presumably still obese and still diabetic, the patient dies.

The narrative arc of the poem is so unexpected that it inevitably provokes a chuckle. Nonetheless, it is troubling to students on several counts. First it turns the concept of compliance on its head by showing that, in the poem, the compliance achieved is perfect but meaningless because the wrong person is doing it. This nonsensical take suggests that compliance is only one aspect of the encounter between patient and doctor and should not always be regarded as the only measure of success. Both the narrator (and we, the readers) have to grapple with the fact that patients don't always do what doctors tell them to do. In CRPR terms, students learn that doctors do not have omnipotent control over their patients. In discussing why the patient may have been unable to or uninterested in walking her puppy, students realize that following "what the doctor says" is influenced by many factors; and that while the physician's power may be rooted in expertise, in this case the patient has her own power, and exercises it by choosing a relationship with the puppy that is very different than the one the doctor envisioned, but one that nevertheless brings her joy.

In one final twist, the poem's artistry offers an additional puzzle. Somehow, despite the physician's initial frustration, despite the failed prescription, despite the ultimate demise of the patient, this is a gentle, bemused, and humble poem that effectively conveys the value of the doctor's caring and concern for his patient. From an RCC perspective, the poem shows us a doctor, patient, (and spouse) who are not simply roles, but people with emotions, idiosyncracies, frustrations, and affections. The narrator, for example, is well aware of both his own emotions, and those of his patient, and he is not afraid to introduce novelty to attempt to create new patterns in the situation.

Perhaps one of the most important lines occurs early in the poem, when the doctor realizes that his patient's health is deteriorating and that, so far, he hasn't been able to save her. At this point the narrator says, "So/I thought." This line illustrates the self and situational awareness that CRPR and RCC both advocate. By reflecting on his own and his patient's limitations, and the exasperation he feels at these constraints, the physician is able to develop empathy. Unwilling to give up or emotionally abandon his patient, he also resists giving in to his own annoyance and helplessness. Instead he keeps trying. In CRPR terms, the physician approaches his patient's "noncompliance" with curiosity, compassion, and more than a modicum of humor, rather than fear and defensiveness. Rather than burden himself with self-blame and guilt (the consequences of unrealistic control aspirations), he simply remains open to the possibility of change. And apparently he remains open for twelve years. Did he achieve better A1C numbers in his patient? Did he extend the patient's life? The poem is silent on these questions. But most students feel that doctor and patient shared a precious partnership, and that the physician's position in relation to the patient was fundamentally a moral one.

Conclusion

Prose and poetry have an important contribution to make in helping medical students engage with the abstractions of conceptual theories such as RCC and CRPR even as they wrestle with the challenges of issues such as adherence/compliance. Of course, the relational and communicative questions raised by RCC and CRPR play out daily between doctors, medical students, and patients, and obviously such encounters provide fertile soil for examination. Physician educators (12) have crucially advocated, and rightly so, for real-time, moment-by-moment awareness of actual clinical process. But just as Dr. Wright found value in retrospective reflection about himself and his patient, so too can students benefit from teaching experiences in which the priority is stimulating critical awareness, as well as the multi-tasking reflection that is required at the bedside. Through humanities teaching such as I have described above, the ways of perceiving and being that RCC and CRPR encourage become increasingly accessible and meaningful to students, and help create and sustain "attitudes of readiness" that, in turn, will seamlessly interface with and support their "real" lives as burgeoning physicians.

References
1. Beach MC, Inui T, and the Relationship-Centered Care Research Network. Relationship-centered care: a constructive reframing. Journal of General Internal Medicine, 2006;21:S3-8.

2. Suchman AL. A new theoretical foundation for relationship-centered care: complex responsive processes of relating. Journal of General Internal Medicine, 2006;21:S40-45.

3. Frankel RM, Inui TS. Re-forming relationships in health care. Journal of General Internal Medicine, 2006;21:S1-2.

4. Duffy FD. Complexity and healing relationships. Journal of General Internal Medicine, 2006;21:S45-46.

5. Chatterjee JS. From compliance to concordance in diabetes. Journal of Medical Ethics, 2006;32:507-510.

6. Wens J, Vermeire E, Van Royen P, Sabbe B, Denekens J. GP's perspectives of type 2 diabetes patients' adherence to treatment: a qualitative analysis of barriers and solutions. BMC Family Practice, 2005;6:20

7. Hafferty F, Franks R. The hidden curriculum, ethics teaching, and the structure of medical education. Academic Medicine, 1994;69:861-71.

8. Freeman J, Loewe M. Barriers to communication about diabetes mellitus. Patients' and physicians different views of the disease. Journal of Family Practice, 2000;49:507-12.

9. Anderson RM, Robins LS: How do we know? Reflections on qualitative research in diabetes. Diabetes Care, 1998;21:1387-1388.

10. Mitchell A, Paul TJ, LaGrenade J, McCaw-Binns A, Williams-Green P. Assumptions about disease treatment challenged in a family health clerkship: views of first clinical year medical students. Education Health, 2005;18:14-21.

11. Wright JC. Walking the dog. In Belli A, Coulehan J (eds). Blood & Bone: Poems by Physicians. (Iowa City: University of Iowa Press) 1998, p. 55.

12. Weissmann PF, Branch WT, Gracey CF, Haidet P, Frankel RM. Role modeling humanistic behavior: learning bedside manner from the experts. Acadamic Medicine, 2006;81:661-7..

English As The Language Of Medical Humanities Learning In Nepal: Our Experiences

April 22, 2009 at 9:17 am


Commentary by P. Ravi Shankar, M.D. and Rano Mal Piryani, M.D., Department of Medical Education, KIST Medical College, Lalitpur, Nepal

A previous blog (Shankar R., Medical Humanities: Sowing the Seeds in the Himalayan Country of Nepal). and journal articles (1, 2) described medical humanities modules at two Nepalese medical schools. Here we discuss some aspects of language choice when teaching medical humanities to participants.

Language is a touchy issue among students. Many Nepalese medical schools admit students from Nepal, India, Sri Lanka and few students from other countries. Most Nepalese students have Nepali or Nepal Bhasa (Newari) as their mother tongue. The Indian students speak a variety of languages; however, Hindi is the national language of India. Neither group is favorably disposed towards the other's language. English is the medium of instruction and is accepted by all (students and teachers).

Multiplicity of languages

The multiplicity of languages spoken in South Asia creates its own set of problems. Often the language of the dominant ethnic or religious group or of the majority of people is selected as the national language. However, the minority groups are often decidedly lukewarm towards this 'national language' and feel they may be at a disadvantage compared to 'native speakers' with regard to the national language. English often steps in as a compromise language. Due to the British legacy English is a familiar tongue and is also not the 'mother tongue' of South Asia's various ethnic groups. Only a very small minority have English as their native language. So all groups have an equal status as regards English and the issue of language can be resolved amicably at least for a certain period.

Language of higher education

English is the language of higher education in Nepal. Classes are conducted in English in universities and colleges. The language of interaction in the classroom may be Nepali or other languages. Also often the slides and other audiovisual materials are written in English while the subject matter is explained and discussed in a mixture of English and Nepali. Certain posh English medium schools in South Asia insist that students use only English within the campus to ensure that they become more familiar with English, especially the spoken language.

Language of teaching the Medical Humanities

A voluntary Medical Humanities module was conducted at the Manipal College of Medical Sciences, Pokhara, Nepal (1, 2). The majority of student participants were from two countries, Nepal and India. Literature and art, case scenarios, group work, debates and role plays were used to explore various aspects of the humanities. The debates and role-plays were conducted in English and language did not seem to act as a barrier to communication. The only problem noted was with literature excerpts. The English was felt to be tough on occasions by the participants and they had difficulty identifying with the situation depicted in certain excerpts.

The authors had conducted a module for faculty members and medical/dental officers at KIST Medical College, Imadol, Lalitpur, Nepal which also used English as the language of learning. The difference from MCOMS was that most of the participants were Nepalese. The authors used 'different' literature excerpts keeping in mind feedback from the participants of the Pokhara module. The excerpts were simplified. However, again the participants had problems with certain of the literature excerpts. Language difficulty and inability to identify with the situation depicted were again cited. The role-plays were conducted in Nepali and the group work was presented using a mixture of Nepali and English. As is common, the writing was in English but the presentation often in Nepali!

Art as a substitute for literature

At present, the authors are conducting a module for medical students at KIST Medical College. Six of the faculty participants of the previous module have joined as facilitators for the student module. The module again uses English as the language of learning. Keeping in mind previous experiences, the authors are not using literature excerpts in the module. It has been our consistent observation that painting and art has the ability to overcome linguistic, cultural, social and other barriers. We are using paintings for various sessions and the feedback has been positive. The role-plays are usually conducted in Nepali and the group work presentations are carried out in English and Nepali.

Jekyll & Hyde

We feel that being exposed to English right from childhood, students in South Asia accept it as a working language. Most however, speak a different language at home and this causes a dichotomy. May be we develop a split personality, a kind of Jekyll and Hyde phenomenon. English describing common place events and household and social activities may be especially difficult as these events are often described using local languages in our setting. Fruits, vegetables, flowers, common implements and religious and other customs and ceremonies common in the west are often difficult for South Asians to understand and comprehend.

Disadvantages and Advantages of English

Using English has the disadvantage of excluding patients from deliberations and decisions about their condition in many cases and may preserve and perpetuate an elite, snobbish image of the medical profession. Does thinking in the western language westernize our thoughts and our outlook? Do we loose the ability to think and understand the native perspective? Do we become 'brown sahibs'? Could this be one of the reasons behind the massive brain drain and migration to the English speaking west? Are we becoming strangers in our own countries?

English also has many advantages. South Asians have easy access to the vast amount of medical and non-medical literature written in English. In the case of the Medical Humanities we were and are fortunate to be able to access and use material in English. Also we can more easily communicate our findings and observations to other workers in the field. Western teachers also find it easier to help and contribute to a course using English as the language of learning.

Language and literature

We wonder, sometimes whether language is the only factor behind this lack of identification with and difficulty in understanding literature. In South Asia, after completing ten years of schooling students diverge into three streams, arts (humanities), commerce, and science. The top ranking students usually go for science. For getting admission to medical school it is mandatory that the student takes the science stream and studies Physics, Chemistry and Biology during the last two years of schooling. A study conducted at MCOMS had shown that preclinical students read widely beyond their course and were interested in literature. (3) However, information on reading habits of doctors is lacking. Could it be possible that doctors have not developed the ability and the aptitude to understand and appreciate literature? A demanding professional career may have prevented them from developing interests beyond medicine. Could the teaching of arts in schools, or the lack of it, have been partly responsible for this lack of interest? Certain aspects of arts and crafts teaching in South Asian schools and the language of instruction at school have been covered in a recent blog article (Shankar R.A Arts and humanities: a neglected aspect of education in South Asia, British Medical Journal: Medical Humanities blog).

Our experience with using English for humanities modules has been largely positive. But as English is the medium of instruction in medical school we are conditioned to the language and the viewpoint and thinking framework it imposes. Most of us are comfortable with English and will have difficulty dealing with technical medical terms in native languages. I think we will continue to use English as the language for Medical Humanities modules as long as it remains the medium of instruction. We have accepted its advantages and disadvantages and at present are unable to look beyond English. Eventually English may become more localized and accepted as a South Asian language or the region will develop another link language and medium of instruction. Which one of these two scenarios will come to pass only time will tell but considering past and present experience we think the former may be more likely!

References:
1. Shankar PR. A Voluntary Medical Humanities Module in a Medical College in Western Nepal: Participant feedback. Teaching and Learning in Medicine (in press)
2. Shankar PR. A Voluntary Medical Humanities Module at the Manipal College of Medical Sciences, Pokhara, Nepal. Family Medicine 2008; 40:468-470.
3. Shankar PR; Dubey AK; Mishra P; Upadhyay DK. Reading Habits and Attitude Toward Medical Humanities of Basic Science Students in a Medical College in Western Nepal. Teaching and Learning in Medicine 2008; 20:308-13.

Announcement: Center for the Humanities and Health

April 20, 2009 at 4:33 pm

King’s College London has established a Center for the Humanities and Health, with the help of a Wellcome Trust award. They are offering a research fellowship. The deadline for submission is May 5.

Let The Living Teach Physicians About Healing

April 12, 2009 at 8:59 pm

A physician watching over a sick child.
Commentary by Felice Aull, Ph.D., M.A.; Adjunct Associate Curator, New York University School of Medicine; Editor in Chief, Literature, Arts, and Medicine Database

In a recent op-ed piece in the New York Times ("Dead Body of Knowledge") Christine Montross made a plea to continue the long tradition of cadaver dissection in medical education.A Montross, a physician and author of the thoughtful book, Body of Work: Meditations on Mortality from the Human Anatomy Lab, argues that anatomy courses based on human dissection offer "a safe and . . . gradual initiation into the emotional strain that doctoring demands." She is concerned that recent trends to incorporate advanced imaging techniques into the anatomy lab may even replace dissection completely and believes that medical students will miss out on the emotional conditioning that human dissection provides. A few days later the New York Times published six letters to the editor responding to Montross’s essay — all of them written by medical professionals or medical students. Five of the six letter writers supported Montross’s position, but a Stanford University professor disagreed, stating that "teaching anatomy cannot be couched in an either or framework; instead, technology and cadavers should enhance each other." I agree with the Stanford professor and here argue that dissection of a preserved cadaver, while it has much to offer for medical education, is not a teaching tool to help physicians and other health professionals "cope" with the emotional demands of working with sick and dying human beings. It has, to the contrary, been noted that the inevitable objectification of the body that takes place as the cadaver is dissected during months of anatomy teaching, marks the beginning of the developing physician’s professional detachment — a detachment that needs to be unlearned and guarded against so that it does not interfere with appropriate care for patients.

Writes one student during her anatomy course, "I can see how easy it is for health professionals to focus on the body and not on the person" (p. 38, Anatomy of Anatomy in Images and Words, by Meryl Levin). And another writes, "I suppose I have become comfortable, or at least reconciled to the reality of the next 10 weeks. I don’t like that. I don’t like that I have stopped truly thinking about the experience, because there is still a lot to think about. These cadavers did once live, breathe, eat, and sleep before they so graciously donated their bodies to medicine" (p. 58, Anatomy of Anatomy). These thoughtful comments were written by anatomy students who volunteered to participate in a project that photojournalist Meryl Levin initiated several years ago, culminating in her book, Anatomy of Anatomy in Images and Words. The students wrote journal entries during their anatomy course, which forced them to reflect on their experience. Most medical students do not participate in such ongoing reflective exercises while they take gross anatomy, or even after they complete the course. Even the memorial services that are often held at the end of anatomy classes do not address the problem of professional detachment and certainly do not address questions of how to interact with dying patients and their families. Following such a memorial service, one student noted that "I found it hard to become very emotional about these prosections, these bodies, these individuals, these first patients of mine. Maybe I am on my way to acquiring some of the tools I will need to become a physician — a scary thought though, because that is not the kind of physician that I would like to become. . . . must we have a memorial service each time we encounter death in some form or another? It worries me a little that we (or I) needed the service to step back for this all-important reflection, something so many of us could not or would not have done on our own, individually. Hopefully dealing with death will be different — not easier, just different — the next time around" (p. 124, Anatomy of Anatomy).

There are, it is true, some medical schools that nowadays recognize the problem of professional detachment and its early beginnings in the experience of intensive cadaver dissection in the gross anatomy lab. Most notable among them is the University of Massachusetts Medical School, which, under the guidance of anatomy instructors and thanatologist, Sandra Bertman, work with students to help them recognize and articulate (verbally and in drawings) their own fear of sickness and death and other implications of working on the dead-see annotations of Facing Death: Images, Insights and Interventions, and One Breath Apart: Facing Dissection, Bertman’s books detailing this approach.

But what will dealing with death be like when it happens to a person the physician has been treating? The artificially preserved cadaver of the anatomy lab cannot be equated with the complex physiologic and emotional processes of becoming sick and of dying, and its dissection cannot be equated to working with suffering or dying patients and those who love them. The cadaver is a static entity, a representation of what once was, not a process that the student has witnessed as it was unfolding. Newer imaging techniques at least allow observation of some body processes, even if they do not provide the emotional substrate for that body and its interactions with others. Although students may project their fears onto the cadaver, the cadaver cannot help them to negotiate the needs of unpredictable and changeable human beings-human beings who, as physicians, they will come to know, however fleetingly. That negotiation can only be learned about and confronted by working with the living and continually reflecting on that work. Generations of medical students have, after all, learned anatomy from cadaver dissection, but physicians have been criticized for failing to engage with dying patients and their families. It is the incorporation of a medical humanities perspective into all phases of medical education, not cadaver dissection per se, that attempts to address such problems.

References
Bertman, Sandra L. One Breath Apart: Facing Dissection (Newton, Mass: Ward Street Studio) 2007

Bertman, Sandra L. Facing Death: Images, Insights, and Interventions (Washington, Philadelphia, London: Hemisphere) 1991

Levin, Meryl. Anatomy of Anatomy in Images and Words (Third Rail Press

Here I Am and Nowhere Else: Portraits of Care by Mark Gilbert at the Intersection of Art and Medicine

March 27, 2009 at 9:47 am

Oil on Canvas painting of man with disability in wheelchair with variety of  technologies to assist him

Commentary by Virginia Aita, PhD, William Lydiatt, MD, Mark Gilbert, BA (artist), Hesse McGraw, MA and Mark Masuoka, MFA

Introduction

AThe exhibition "Here I Am and Nowhere Else: Portraits of Care" explored 45 individual’s experiences with health, illness and caregiving. Three-thousand people attended the inaugural ten-week exhibition of the works that concluded on February 21, 2009 at the Bemis Center for Contemporary Arts in Omaha, Nebraska.A The exhibition arose from a qualitative research study that two of the authors, V.A. and W. L., designed with Scottish artist Mark Gilbert for his two-year residency at the University of Nebraska Medical Center (UNMC). The study, approved by the UNMC Institutional Review Board, included a number of stagesA from the design phase to the recruitment of patient and caregiver subjects, to Gilbert’s active drawing and painting phase, and finally to several stages of analysis and most recently to the exhibition of works.A The findings of the study will be published elsewhere, but we thought blog readers would be interested in knowing about the exhibition and how, as contemporary art, it played a role in helping exhibition viewers engage in an ongoing conversation about the nature of health, illness, care and the challenges, both professional and familial, of caregiving in our society. The exhibition included portraits of 25 patients from across the lifespan representing many varied situations on the spectrum of health and illness and 20 caregivers, both professional and familial.A The portraits served as a focus of conversation during the exhibition and a series of organized lecture-discussions about issues raised by the paintings. We describe below what transpired as we considered Gilbert’s large drawings and paintings that revealed obvious and subtle truths about health, illness, care and caregiving.

The Idea of Care and the Role of Contemporary Art

AOne of the important ideas that arose from the earliest analysis of the drawings and paintings of patients and caregivers was the idea that care is a non-instrumental, holistic process of personal engagement.A We also discovered that the boundaries of this engagement were not as defined as we had originally assumed-all human beings share in the experience of care and caregiving-sometimes as a patient, sometimes as a caregiver, and sometimes as both at the same time. This realization was further strengthened by patients’ willingness to participate in the study in order to "give back" so that others might learn from it.

As the exhibition drew closer, we knew that we wanted to explore the engagement that happens in the transfer of care between patients and caregivers.A To do this, we realized that framing the ideas we wanted to explore would be important.A At the same time, we wanted to encourage the public to join in the discussion.

To frame the important ideas, we invited the public to a pre-exhibition reception and evening of short background lectures the night before the actual gala opening of the exhibition at the Bemis Center for Contemporary Arts. The first brief remarks were made by project investigators about the origin of the project.A Following this, the Director of the Bemis Center for Contemporary Arts, Mark Masuoka, spoke on the role of contemporary art in society and in particular about the role of this exhibition in the on-going national discussion about health care.A He was followed by artist Mark Gilbert who spoke about his experience working as an artist-in-residence within a medical center with patients and caregivers. Finally, Emeritus, US Poet Laureate, Ted Kooser spoke about his experience as a patient featured in the exhibition.A Kooser then read a selection of poetry about his encounter with illness helping to focus the events that would follow during the exhibition.

The opening lectures set the stage for a series of three gallery discussions that took place every other week during the exhibition itself when we invited a speaker or panel of speakers to share with the audience their insights and experience about care relative to the drawings and paintings.A After each had spoken, the speaker(s) opened the discussion to the audience so that a give-and-take conversation about the topic could take place.A We held the lecture-discussions in the gallery itself, with the portrait works all around us.A Attendance varied between 80 and 150 participants.

The Lecture/Discussions

Patients and caregivers

For the first lecture-discussion on January 15, 2009, we invited a panel of patients and caregivers to talk about their experiences with the portrait project and we asked how it had influenced them in thinking about their roles, whether as a patient, a caregiver or both.A Two patient subjects spoke. One had undergone bariatric surgery for the purpose of health promotion while the other had been under treatment for brain cancer over a period of 10 years. Of the two caregiver subjects who spoke, one was a familial caregiver, the other a physician.A Panel members spoke about five minutes each about their experiences of being drawn or painted and then reflected on the meaning of it in their lives. The patients both stressed how the artist had succeeded in seeing them as whole people, not just physically but psychologically intact and the importance of that for effective care to take place.

Jove, a nearly blind African American, spoke about the importance of the project in helping to break down all kinds of barriers that prevent us from seeing, appreciating, and caring for another. The caregivers spoke about the impact of the project in helping them see and be responsive to the whole person (the patient). Dolores, Roger’s wife told of his belief in the importance of the project to help others overcome their fears of the ill.A He wanted to help care for others, even in his own debility caused by ALS so that they might learn more about the importance of personal engagement in care.A She said only as she understood the meaning of the project for her husband did sheA comprehend its importance and relationship to what she was doing in caring for him. The physician caregiver commented that the project had highlighted the importance of the bond that exists between patients and caregivers and had affirmed for him the importance of loyalty to the patients he serves.

Following these comments, we passed the microphone among members of the audience and many reiterated the importance of the relationship that exists between the ill and those who care for them-emphasizing that it is the relationship that is the heart of care as it unfolds in the doing of care.A Several people also raised the issue of how difficult it is both to be the recipient of care as well as the giver of care.A They spoke of our human condition that must yield to being both giver and a receiver of care, at different times or sometimes, at the same time.A Both roles are difficult and demand changes in who each is as a person, in personal identity, the topic of the second lecture -discussion.

Introspection

On January 29, 2009 Dr. Carl Greiner, a psychiatrist, spoke about the introspective nature of the portraits and what they imply about the nature of care and its relationship to personal identity. Walking from painting to painting in the softly lit gallery he engaged audience members in observing and explaining what they saw in the drawings and paintings. For example when he focused on one large almost 6’X6′ painting of the head of a bald young man nearing the end of his life despite chemotherapy for cancer, Greiner discussed what the audience’s observations implied about the patient’s psychological state and probable hopes, fears, and transformation due to illness.A This portrait is so compelling that it brought out psychological responses of audience members who articulated their own fears of cancer and death as they sat face-to-face with the raw truth of this young man’s life and imminent death.A In the communal and safe space of the gallery viewers engaged with others in the audience to articulate the most basic of human fears that were roiling within them. Greiner emphasized that the psychological and emotional states observable in the portraits and within us as viewers represent the common threads of our shared humanity.A When patients and caregivers interact in the transfer of care at such a level of shared, common experience, the identity of both is transformed.

Artist, curator, director perspectives

The final program on February 12, 2009 featured a panel with the artist, the curator of the exhibition, Hesse McGraw, and the Director of the Bemis Center for Contemporary Arts.A In this presentation, Gilbert spoke from the artist’s point of view, emphasizing the effect that the project had upon him.A Reflecting some of the discussion at Greiner’s presentation, Gilbert spoke of the difficulty he sometimes had in continuing with the work day-to-day, so powerful had its effects been for him as he worked with patients at critical times during their lives. The caregivers also had a profound effect upon Gilbert as he felt in some manner the gravity of the work they do. As the project proceeded he found that these challenges, far from being a hindrance, were to prove the driving force in the creation of the images. Gilbert spoke of the variety of powerful emotions and states of being that he was "privileged" to witness and tried to harness.

McGraw followed Gilbert and spoke from the curator’s point of view about presenting the work to the public. He pointed out that the portraits show the basic things that are needed to build a relationship in care such as trust and respect, but added that these portraits go far beyond that to tell intimate stories in a context of care. Using this idea, he then went on to ask those in attendance how the portraits might change our notions of what medical care in the contemporary world could be. AThen Masuoka spoke from the Director’s point of view about the role of contemporary art in highlighting and informing pressing societal issues, particularly health care. He said that art has the capacity to "kill" false assumptions that lead society down false paths.A He argued that this project, as contemporary art, has the capacity to inform viewers about what care is at a human level, and to inform viewers about what care should entail.

As we enter into a national conversation about healthcare reform, an exhibition such as this is important, he said, in helping the public to address what is critical to the enterprise.AA If the views of McGraw and Masuoka are valid, and we believe they are, contemporary art carries a heavy responsibility. Yet as the microphone was passed about the audience of more than 180 people, it was clear that audience members had engaged with these heavier questions about the role of health care in our society.A It was equally clear that for those in attendance, the most critical element of care is the human element.A This of course does not eliminate the need for the more technical medical and surgical aspects of care, but emphasizes that humane judgment in the doing of care is essential.

Conclusion

We have found our collaboration bringing contemporary art and medicine together to be extremely rich as both a research model and as an educational approach to explore the meaning of health, illness, care and caregiving. The exhibition of portraits of patients and caregivers and the related lectures and discussions about issues germane to the portraits have helped all who participated in these events learn a great deal. Our future plans are to tour the exhibition, along with an accompanying curriculum that can highlight important ideas that arise from it.A An exhibition catalogue is also available that includes reproductions of the artworks and essays written by the project originators, the artist, the curator and Bemis Director and others as well as by a select number of patients and caregivers all of whom provide varied perspectives. We are in the process of assembling a package that will allow the exhibition art works, curriculum, and catalogue to travel to other venues to be shared. For more information, please contact either Virginia Aita (vaita at unmc dot edu) AAAor the curator Hesse McGraw atA hesse at bemiscenter dot org.

Virginia Aita, RN, MSN, PhD is Associate Professor in the College of Public Health, Department of Health Promotion, Social and Behavioral Health, University of Nebraska Medical Center (UNMC), Omaha, Nebraska

William Lydiatt, MD is a Professor of Head and Neck Surgical Oncology at the Nebraska Medical Center, UNMC, and Nebraska Methodist Hospital, Omaha, Nebraska

Mark Gilbert, BA completed a 2-year Artist’s Residency at the University of Nebraska Medical Center, Omaha, Nebraska and currently practices art in Glasgow, Scotland

Hesse McGraw, MA is Curator at the Bemis Center for Contemporary Arts, Omaha Nebraska

Mark Masuoka, MFA is the Director at the Bemis Center for Contemporary Arts, Omaha, Nebraska

Acknowledgements:A We wish to thank the following for their support of the exhibition, associated program and catalogue:

The Nebraska Medical Center
The Division of Head and Neck Surgical Oncology in the Department of Otolaryngology-Head and Neck Surgery
The College of Public Health
Omaha Steaks
The Nebraska Arts Council
The National Endowment for the Arts

Embodied/Disembodied

March 10, 2009 at 9:10 am

The Slow Death of Rose

Commentary by Joyce Cutler-Shaw, artist; Artist in Residence, School of Medicine of the University of California San Diego

History is story telling with images embedded in memory. The history of anatomy is a history of human representation: how we are seen and how we see ourselves. Visual images are continually shaped and re-shaped by the enthusiasms and preconceptions of the present. The visual representations of the history of anatomy are an extraordinary record of our evolving self-images, public and private, cultural and social. As historian Martin Kemp has written, in observing the connections of medical science and art, "No field is richer in metaphor than the body." (1)

Body representation has been a significant feature of human visual culture from stick figures and handprints of pre-historic cave paintings to medieval illustrations; from Renaissance drawings of human dissection by artist/anatomists from Leonardo da Vinci to George Stubbs; from Rembrandt to Thomas Eakins; from the early 20th century European disease study waxes to the newest, digitally developed, life-like models with touchable, veristic, simulated wounds for training battlefield first responders - and from the virtual body of the Visible Man to the artist Virgil Wong‘s eponymous "Pregnant Man." Arthur Danto has written in The Body/Body Problem, that representation "brings something to the world it would otherwise lack - a point of view, with reference to which objects are transformed into instruments and obstacles and hence, systems of meanings." (2) Exploring across the disciplines of art and medicine I have discovered the medical field to be an arena for the newest forms of body representation. It is at the intersection of art and medical science that new insights in interpreting the physical self can emerge. Moreover, no field confronts issues more contentious than the medical such as when life begins and when it ends, and the limits of normalcy and the aberrant.

The Anatomy Lesson

My project titled, The Anatomy Lesson, is inspired and informed by my role as Artist-In-Residence at the School of Medicine of the University of California San Diego.A UCSD has been a leader in medical humanities and the first medical school nationally to appoint a visual artist for an independent fine art residency. I am honored to have been selected. The Anatomy Lesson is an exploration of the physical self and the human life cycle from birth through the process of aging and death- an odyssey of individual transformation common to all living things. It is also an investigation since 1994, of aspects of the history of anatomy by visiting great medical collections in our country, in Europe, China and Japan.

Medical models have depicted and re-shaped our body image through the centuries. The medieval cosmological metaphor of Zodiac Man was astronomically determined when we were creatures of humours and bile. The 16th century anatomist, Vesalius, and others of that time, made an argument for anatomy as a holy and divine art. Interpreting anatomy within a theological context was to "seek to 'know thyself’ by recognizing that God is present within the human body."(3) We were worthy of study and the body was open to investigation in order to understand the secrets of life. With the Renaissance and the emergence of the practice of dissection - of the "open body" - artists began to depict the anatomical figure, in human scale, as dynamic and dimensional. Leonardo da Vinci, pivotal artist and anatomist of the 16th century, opened the body labyrinth, even to initiating the anatomical positions and the cross section -which are still standards today. He drew the open torso as a body fragment with the fetus in utero, umbilically connected and close to term. Studying the body in specialized sections is current medical school practice, just as medical specialization is standard practice in contrast to holistic medicine.

Fragmented Body

Fragmentation is typical of the postmodern period as historian Linda Nochlin argues in her book, The Body in Pieces. (4) I have seen recent medical texts without a single whole body image.

In the 18th century gifted Italian craftsmen and a noted woman, Anna Morandi Manzolini, a professor of anatomy, an unusual role for a woman at that time, created life-size and life-like figures of painted wax with the texture of skin. They are still on display in medical collections at the University of Bologna, La Specola in Florence and the Josephinum in Vienna, Many were presented in the typical seductive poses of their time, as a reclining male odalisque, a "vein man," and as a reclining female nude, her arm gracefully bent beneath her head, with long blond hair, earrings and necklace of pearls, with open eyes and open abdomen.

Historically, the anatomical model has been male. Anatomical depictions of women have featured the uterus, often with fetus in utero, as childbearing remains a primary interest in women’s bodies, even depicted without the woman. Before the 14th century, when life and death formed a unity, medieval woodcuts depicted the fetus as a miniature person - a little adult - fully formed and seemingly, free standing. As the practice of dissection emerged the anatomical figure was presented in human scale, as dynamic and dimensional, with a search for physiological precision. The nineteenth and early twentieth centuries, brought the X-ray and metaphors of transparency. The surprise discovery of 1896, the X-ray, the "new light" as it was called, revealed for the first time, the hidden recesses of the living body. I traveled to Dresden to the Hygiene Museum to see the first transparent "Visible Woman" which revealed internal body parts. She is molded in the yellowing hard plastic of the early 20th century and placed on a pedestal with arms upraised. She is life-size. Contemporary models in the art and medical worlds raise new issues of human scale, as it escalates in the postmodern period to the gargantuan.

Today we can walk the 50 foot length, head- to- toe, of a contemporary anatomical model at the California Science Center in Los Angeles. Called "Tess," a glowing red light illuminates the interior architecture of the enormous bald head. The whole "body" is a cage of plastic and metal and blue-green retractable panels of hard "skin." See-through windows with flashing lights reveal the huge internal moving parts. She is ten times human size. We are the equivalent of a fetus or tumor in this labyrinthine figure. One hundred and twenty people can surround and view this supermodel at one time. To what degree can we identify and illuminate our own bodies with models of this scale and glitz? And what does it mean to lose our sense of human scale when exaggeration is as much a keystone of public attractions as it is of the grotesque? In Philadelphia at the Mutter Museum, the extremes of human skeletal form are displayed side-by-side in a circular case as curiosities with a circus sideshow feel.

Today we have sonograms and C-T scans, MRI’s and PET scans to view the internal body in real time, and which require informed visual reading, as, in fact, do figurative images in any context. Analysis is interpretation, as when a subject, a woman in labor, for example, becomes an object. In a contemporary delivery room, a woman in bed is typically wired to monitors, which continuously display her vital signs. Seated next to her, a nurse gently moves a mouse across her abdomen while diligently watching the screen to monitor the performance of the fetus. That is, if she has not been replaced by a virtual nurse as in some hospitals in Japan. What does it mean if a woman’s body processes are well attended, when she herself is ignored?

Disembodied

Our western historical tradition has focused on a physiological creature of flesh and blood, of skin, viscera and body fluids on an armature of bone, our embedded skeleton as primary structure. However with the arrival of the x-ray we could skip the knife and see through skin to bone to see a mysterious realm of tonal gradation. The rigorous training of radiologists in the strategies of visual reading often surpasses that of contemporary visual artists. In our era with advancing technologies of medical visualization, (computed tomography, magnetic resonance imaging and positron emission tomography) of photonics and bio-photonics, we are losing our physical selves. We are being reinterpreted through medical imaging at the forefront of body representation, dramatically demonstrated at annual conferences, such as "Medicine Meets Virtual Reality." (5) With the advances of remote, robotic surgery the eye-hand co-ordination of 8 to 12 year olds from playing video games is training them in the requisite skills of today’s and tomorrow’s new surgeons. Advanced medical schools are even considering robotic surgery as a specialty training program - for the Da Vinci Surgical System, for example- that would be separate from the standard four year medical school curriculum for medical doctors. Such specialist surgeons, operating from remote locations, even different countries, would not even have to meet the patient.

The contemporary Visible Human project is the result of a very costly, highly complex process, whereby a self-donated criminal cadaver has been micro-sliced and digitized and made available from the National Library of Medicine as a distribution base for an extensive range of independent programs for medical study. Medical schools and research labs have developed 3-D Virtual Reality Anatomy programs of the Visible Man and Visible Woman. Now we can exchange a physical self for a 3-D virtual reality display on a 2-D.screen, at a time, when for economic, rather than practical reasons, some medical schools are abandoning their established anatomical dissection programs for computer and real-time laboratory demonstration dissection. However, what is lost is the powerful hands-on sensory experience of the unpredictable, individual physical self. After all, no two bodies are alike, many with remarkable differences, which cause huddles in the anatomy lab.

We can now study the heart with goggles and magnetic finger tipped gloves. We can enter the rib cage, zip into the inferior vena cava, orbit the chambers and valves, and ride the looping Perkinge fibers, conveniently colored yellow. We can enlarge the image until it seems to emerge from the screen. It was illuminating to discover that, to develop this display at UCSD, advanced drawing skills were invaluable in visualizing and programming the quarter turns of body parts, as the available 3-D imaging programs were inadequate. The scale is variable and we can enlarge to room size in a total surround. That is, if we can afford the equipment to do it.

We now have the option of a cosmetically reconfigured self within our evolving social/cultural/medical and genetic age of cyborgs and avatars. With photonic and bio-photonic imaging we are represented as scans and graphs, as neon colored printouts of body hot spots, and as linear genetic arrays, in effect more virtual than physical. Even in death we have more options than burial or cremation. We can be cryogenically frozen or plasticized as the plasticized cadavers of Gunter von Hagens’s "Bodyworlds" and its offspring exhibits of "The Body."

Our challenge is to understand and respond to the implications and consequences of these advancing phenomena that culturally define us. It is because we are still here, in our skin, embodied and temporal, transforming physically over a lifetime, even as a reluctant public takes the adversarial position of refusing to accept that we are of nature,A that we age and die. I argue for the immediate and the visceral because I believe that the life we have is an evolutionary gift, and that, at whatever our stage of life, we, in ourselves, are a unique demonstration of that vital process. We are the perfection of ourselves.

Note: This commentary has been abbreviated from a paper presented at a 2009 College Art Association Conference Panel titled "Clothing, Flesh, Bone: Visual Culture Above and Below the Skin," Co-Chairs, Sarah Adams and Victoria Rovine.

References

1. Martin Kemp, "Medicine in View: Art and Visual Representation", Western Medicine: An Illustrated History, ed. Irvine Loudon (New York: Oxford University Press, 1997) p. 11.

2. Arthur C. Danto, The Body / Body Problem (Los Angeles: University of California Press, 2001) p. 14.

3. Walter Schubpach, The Paradox of Rembrandt’s 'Anatomy ofA Dr. Tulp’ (London: Wellcome Institute for the History of Medicine, 1982) p. 31.

4. Linda Nochlin, The Body in Pieces: The Fragment as a Metaphor of Modernity (New York: Thames and Hudson, 1995).

5. Medicine Meets Virtual Reality 17, NextMed: Design for/the Well Being. Medicine Meets Virtual Reality is an annual conference on emerging data-centered technologies for medical care and education. It includes The Well, which merges formal exhibits with casual demonstrations and The Salon, which mingles the visual arts, science, and medicine.A January 19 - 22, 2009. The Hyatt Regency Long Beach, Long Beach, California

Nurturing Reflection and Humanistic Practice: Growing Humanities Programs at a Suburban Community Hospital

February 22, 2009 at 12:40 pm

Commentary by Nancy Gross, MMH, MA, Palliative Care Community Liaison andAFacilitator/Scholar of Humanities Programs,A Overlook Hospital/Atlantic Health, Summit, New Jersey

"The humanities are the hormones…to infect with the spirit of the Humanities is the greatest single gift in education."A

Williams Osler, The Old Humanities and the New Science (1)

AAAAAAAAA Humanities Programs at Overlook Hospital

Since 2005, Overlook Hospital has promoted programs in the humanities. This was not part of an institutional plan, but rather at the initiation of several humanities proponents and some willing administrators.A These programs are stealthily flourishing in the midst of explicit campus, clinical and technological development.

1/2005-ongoing

A monthly two-hour seminar series running from January to June with twenty hospital employees as participants. Overlook is one of seven New Jersey hospitals participating in the program which is supported in over twenty-five states. Participants include both clinical and non clinical health care professionals. Literary works evoking medical themes are read and discussed; books and a meal are provided. The goals of this national program are to increase caregiver empathy for patients, to improve patient-physician communication skills, to stimulate cross cultural awareness, to enhance job satisfaction, and to create community among professionals. Evaluative data are available for the national, state and Overlook cohorts. As of the 2008-09 academic year, the hospital’s division of Academic Affairs has assumed support of this program.

  • Literature and Medicine: A Community Dialogue

9/2007-ongoing

A community based program modeled after the national hospital Literature and Medicine program. The program reaches 15-20+ participants per six month session, totaling four sessions during the grant period. The focus of this program is on educating participants around issues of aging, care giving, palliative care, medical decision-making, and end-of-life. Community response has been positive. The program has proven to be a powerful way to reach out to the community members in order to educate and empower them about the present day reality of medical institutions and end-of-life scenarios. This program has been generously supported by the Blanche and Irving Laurie Foundation.

  • Narrative Medicine/Medical Humanities Conferences

10/2007-ongoing

A ninety-minute monthly conference for Internal Medicine residents in which a short literary work is presented. Residents and faculty read and discuss the work in light of their own daily practice as physicians.A A short reflective writing session follows the discussion. Physicians share their work orally, and subsequently all edited writing is shared electronically. Physicians are encouraged to continue working on their pieces and to deposit their writing into their professional portfolios. Resident writing has appeared in hospital publications and research events.

  • Conversations

9/2008-ongoing

A ninety-minute monthly conference with 3rd and 4th year medical students during their hospital clerkships. Students are introduced to the concept of narrative medicine and medical humanities philosophy and practice. They are presented with a short published piece written by other medical students. They discuss the piece, and relate it to their own experience as emerging physicians. Students write reflectively and share their writing, which is subsequently distributed to the group electronically.

  • Film Night

9/2008-ongoing

A monthly film screening and discussion for residents and other hospital professionals that provides a relaxed and collegial atmosphere to de-stress. Classic and contemporary films that portray physicians and medical themes are shown. A discussion follows the screening.

  • Literary Readings and Special Events

5/2008-ongoing

  • Danielle Ofri, MD, PhD, physician/author read from her work Incidental Findings. Clinicians and community members attended
  • Paul Gross, MD, physician/author /founding editor of PulseMagazine.com presented a rationale for physician writing and elicited short pieces from family practice and internal medicine residents
  • Penny Harter, poet, read from Night Marsh to a mixed audience of health care professionals and community members
  • Stephen Kiernan, journalist/author conducted a conference call to discuss his work Last Rites with Literature and Medicine: A Community Dialogue participants
  • Rosemary McGee, poet, will read and discuss her work Spilling My Guts to Literature and Medicine at the Heart of Healthcare® participants

Proposed programs:

  • A Night at the Movies at Overlook

A pending grant proposal to have a monthly film screening at Overlook for the neighboring community. The focus of the films and discussions will be around aging, caregiving, medical-decision-making, palliative care and end-of-life.

  • Art Show and Lecture

Visit by Ana Blohm, MD to show her photographic work and talk to clinical staff and community members.

  • Patient /Family Story Project
  • In development

  • Partnering with Long Term Care Facilities to bring Literature and Medicine: A Community Dialogue to residents and families

A 'Infecting’ Hospital Culture with the 'Spirit of the Humanities’

Growing a culture of reflective practice that focuses on humanistic medicine has been a transformation that has taken place slowly, steadily and intentionally.A After just several years, I am happily seeing indications of change taking place.A It is hard to walk through the hallways of our 500 bed teaching hospital in northern New Jersey without someone stopping me to chat about a book we are reading, suggest a title, comment on a poet that has recently visited or offer an insight that surfaced at a reflective writing session. This is how doctors, clinical managers, nurses and other healthcare professionals often relate to me during their day of clinical work.A I consider this a clear measure of success. It indicates a hopeful shift in how the business of medicine is being done and how we are thinking of ourselves and the patients we care for. Taking even a moment in a day to connect with colleagues about the art, not the science, we see in our practice indicates an openness to explore what we are doing through the lens of the humanities. At a recent weekly clinical team meeting, the chief of medicine stopped mid sentence, ran out of the room, returning withAThe White Life by Michael Stein in hand. He went on to read a poignant passage about how physicians rarely experience the intimacy of caring for patients as nurses do. It was the perfect passage to get the meeting participants to recognize the essence of where our conversation was heading.

How Did This Growing Momentum of Humanities Mindfulness Begin at Our Hospital?

In 2005, I had the opportunity to participate in the first cohort of a literature and medicine seminar at the hospital. Overlook Hospital/Atlantic Health was among the first three New Jersey clinical sites invited to participate in the national Literature and Medicine: Humanities at the Heart of Health Care program supported by the Maine Humanities Council. AI was still a long time tenured faculty member in an NYC community college teaching in a department completely unrelated to the medical humanities and was concurrently enrolled in the graduate program in the medical humanities at Drew University. AI had extensive experience as a volunteer being with people at the end of their lives. When I was not teaching at the college I was interning with the hospital’s palliative care team.A AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA My goal was to explore palliative practices in an acute clinical care setting and transition from a long career in higher education into healthcare.

Participating in the monthly literary group especially resonated for me since I was already immersed in narrative expressions of illness through the graduate curriculum. Coming together with an interdisciplinary group of health care professionals to discuss text was a rich opportunity for me to understand the multiple voices heard within the healthcare environment. ASubsequently, I more fully appreciate how this gathering of clinical and non-clinical staff successfully debunked the customary hospital hierarchy and allowed space for individuals to think and express themselves outside of their perceived professional roles.

I had also begun to write stories of patients I had been with and had the occasion to read them at professional meetings within the medical humanities community. I was asked to write a series of stories voicing the experiences of healthcare professionals at the hospital. The collection was used for the centennial celebration of the hospital’s founding. The enthusiasm for the stories by the people whose voices they echoed, and hospital community at large, was an inspiration to me.A I was motivated to continue my discovery of the power of narratives and how they could be used to inform, provoke and empower people, especially as they navigated life-limiting illness and the end-of-life. This ultimately became the topic of my thesis research.

I retired from my faculty position at the college and was spending more time at the hospital. I was identifying mentors and wondering if I would ultimately find my own voice within this community of medical practitioners. By the third year of the hospital’s participation in the national literature and medicine program, I was invited to become the facilitator/scholar of the seminar. This challenged me to apply my skills as an educator in a new discipline.A The seminar series has been very successful, with a waiting list of applicants, and participants who protest when we break at the completion of the six month series.A We are currently contemplating to extend our current half year literature seminar throughout the academic year.

I thought it was crucial to find an effective vehicle to bring the message of palliative care to the lay community. If we were going to be effective in educating and empowering people to be advocates for the care they wanted for themselves and their loved ones at the end of life, we would have to do better than simply offering advance care planning workshops. The power, and beauty of stories and their ability to provoke change seemed clearly the way to begin opening the collective conversation about the end-of-life.A With the help of a grant, this became the community seminar series, Literature and Medicine: a Community Dialogue. The series has attracted a diverse community of participants and has motivated people to take action.

With the arrival of a new chief of medicine who understands the value of humanities education and practice, new opportunities have arisen. I was asked to develop programs for resident physicians, which have been successful and extended to medical students as well. Monthly film screenings and special events have also been successful, attracting sizable numbers in attendance. With the full integration and participation of the clinical faculty, young physicians witness behaviors and attitudes modeled by their seniors that instill respect and value for the power of story. A culture that recognizes, shares and values narrative is emerging.

Moving Forward

As we move forward with our humanities education, we see opportunity for refining programs that we already offer as well as developing new programs. We are looking closely at developing a program that will be directed at eliciting patient and family stories, using those stories both as mechanisms for healing and educating. AWe have begun to collect some elementary data to quantify the impact and efficacy of our humanities programs upon clinical practice. Thus far, the development and implementation of these programs, has utilized very little funding. It has essentially been a grassroots initiative based on the passions of a very few individuals.A However, hospital administrators have been noticing (and participating in) these activities, and there is a positive response to the work.A We are now preparing to make a formal proposal to the Division of Graduate Medical Education to garner financial and institutional support to grow our programs and to partner with our affiliated hospital to expand our humanities activities.

As the vision of our programs mature, so too do we as practitioners of medical humanities. I am proud to know that I have been an agent of change in the community hospital that I work. But I am humble as well, to know that I am just learning on the shoulders of the luminaries of the medical humanities. And I am grateful.

Reference

1. William Osler.AThe Old Humanities and the New Science.A Presidential address to the Classical Association, May 16, 1919. Online by Johns Hopkins Health System and University at http://www.medicalarchives.jhmi.edu/osler/oldhum.htm, p. 26 and p. 33.

Ethics and Aesthetics: Photographing Patients

February 5, 2009 at 1:12 pm

Arthur, 2007

Commentary by Ana Blohm, M.D., Assistant Professor of Medicine, Mount Sinai School of Medicine; physician in Mount Sinai’s Visiting Doctors Program; co-director, Humanities and Medicine Program in the Division of General Internal Medicine

"Is it OK if I take your picture?"
"Of course Doc, you can do anything you want."

For almost five years I have been taking care of homebound persons in upper Manhattan. The majority of my patients are elderly and frail, the rest are disabled by the advanced stages of chronic or terminal medical illness. A small minority suffers from psychiatric illness that prevents them from leaving the home. At any one time, I care for approximately ninety patients and I see them at regular intervals in their homes. If it weren't for our Visiting Doctors Program, these people would mainly be getting medical care through the ER, often when it is too late to affect the outcome of the acute event that brought them there.

Also for five years, I have been photographing many of these patients. It is impossible for me to clearly articulate why I started to document my visits, except to say that for me it seems more inexplicable not to photograph the world my patients live in.

From Chart to Art

At first, I started taking Polaroids to help inform the medical history. We are a group practice and often care for each other's patients over the phone, and in such a setting a photograph can be an invaluable aide in medical decision-making. The photos also helped me recall my patients when I was new on the job. I didn't think twice about the propriety of taking these pictures, they were an invaluable part of the medical record and were only used as such. The consent form was signed as a bureaucratic formality.

Almost immediately, I started to appreciate the Polaroids aesthetically. There was something touching in my patient's expression, something timeless in the corners of the room that were visible in the background. I found myself composing the images deliberately; I tried to include a colorful quilt, a glowing Christmas tree, a stuffed animal collection.

On my end, this still implied no conflict. Despite the fact that I was taking some artistic liberties, the photos of my patients remained destined for the chart as a useful part of the medical record; I was just having more fun at it. And again, the consent form was completed and never thought about again.

The Polaroid project ended when our practice adopted an electronic medical record, and at around the same time I upgraded to a digital camera. It would not be entirely truthful to say that this was just to continue to get images into the medical chart; by this time I had been overcome with a compulsion to photograph my patients and their home environment.

I took my camera along with my doctor bag, and after completing the medical visit I would sometimes ask for permission to photograph. Often, the patient caught unaware would say "next time" and I would return to find them dressed up with a wig and make-up, the bed perfectly made, and the apartment cleaned and dusted. This often altered what I had liked about the scene initially, but at least it validated for me that my patient had understood the far-reaching implications of my request. So I photographed sometimes for them, and sometimes for myself. But clearly, a line was drawn, and these pictures were no longer for the chart.

Some of the portraits became teaching slides for students and residents, figures in journal articles, illustrations for our program's brochure, and images that helped in raising funds needed to help maintain our program. One photograph was reproduced and used by the family of a patient as the picture for her funeral service; another one became a Christmas card. On my end, I hesitantly began to show the images of my homebound patients in my photography classes, and started to wonder if I would ever find it acceptable to myself to publish them in entirely non-medical and non-academic arenas.

My Patient/My Muse

Over the years I have cared for hundreds of patients and photographed less than thirty of them. I limit my portraits only to those patients that I judge can give informed consent in the truest possible sense, and I only ask patients that appear to be extroverts and empowered enough to say "no" to me. I make it clear that I am taking a picture because I like what I see: the person, their room, or their belongings, and that it might be shown to others outside Mount Sinai. I do not ask surrogate decision makers for permission; if my patient is incapacitated I can't allow myself to make their portrait, period.

I discard photos that are unflattering, and all that seem to be ironic, sensationalistic, or morbid. I am vigilant about avoiding "illness pornography." Occasionally I will open the blinds or move something out of the camera's way, but I do not compose scenes, direct my patient to pose, or place anything in the photo that is not there. After I photograph, I bring a copy of the photo as a gift and again ask for permission to share it with others. Finally, I embrace my institutional subjugation by asking my obliging patient to sign (originally two, now three) HIPAA forms.

My consent standards are higher than those of the average photojournalist or fine art photographer, and yet, I get butterflies every time I think about what I am doing. Why is that?

I suppose the answer lies in the fact that I feel that it is easy to be "ethical" in the trivial sense: ensuring informed consent, respecting confidentiality, signing forms, etc, etc. But ethically speaking this is low-hanging fruit, and being satisfied with this level of compliance is a sign that one is missing the actual moral issues inherent in patient photography.

My patients are often surprised about the way in which I ask to take their picture. The majority seems to feel that all my explanations are unnecessary… after all: "it's just a picture not a blood draw." And often enough, for most of them, that is all it is: "just a picture." The reality is that most of them have more important things going on in their lives than to care about pleasing their doctor, about whether an image of them will be floating around the world, or about the subtleties of whether their consent is truly informed. But there are a few patients that deeply desire to be "good" for me and they probably feel that this includes being agreeable to my eccentricities. Despite the power differential, although plausible, I don't think this is an issue of them feeling that if they were to object they would loose me as their doctor or that it would affect the quality of the care I will provide. It is simply that they value our relationship and genuinely wish to help me. But by placing them in this situation I may be overstepping my boundaries as their doctor.

Ethics and Aesthetics: What Now?

How should I approach this dual role as a physician and a photographer? Are the ethical standards higher for me than they are for a healthcare provider taking a teaching photo (say, documenting the medical care in an underdeveloped country)? Are they higher for me than for a photojournalist illustrating a story on healthcare? (1) And interestingly, is there something inherent in photography that makes it a more "objectionable" artistic pursuit for a physician than writing about a patient, or even sketching, painting, and sculpting the likeness of a patient? The answers are yes, yes, and yes.

A physician that photographs a patient for illustrating a journal article is first and foremost a healthcare provider; a journalist reporting in healthcare is first and foremost a journalist. The roles in these cases are clear, and there are no expectations beyond the obvious ones associated with the interaction. Doctors involved in the arts do grapple, consciously or unconsciously, with competing and sometimes opposing drives: a situation that is approached medically is often experienced aesthetically and vice versa.

More has been written about ethical and moral principles to guide physician-writers than to guide any other physician-artist. Rita Charon argues that patients own their story and we must seek their approval before we publish any literature in which they might be recognizable, even if only to themselves or to close relatives. (2) This may not be applicable to all types of medical stories (for example medical errors) or to all patients (the "difficult" patient, the psychiatrically ill, or those for whom disclosure may be distressing), but it is a good general rule. Dr. Charon states there can be a therapeutic value in sharing a story with the patient that inspired it, and I find a similar value for patients and their caregivers when I bring photographs into the home.

The ethical question in writing fiction, non-fiction, and creative non-fiction, is not necessarily about the propriety of using your patients as inspiration for artistic work-it has more to do with the subsequent dissemination of your aesthetic output. The issue becomes one of privacy and of authorship. If privacy is protected by changing recognizable facts, then at what point are the particulars altered so much that the distinction between fiction and non-fiction becomes absurd? If the fiction is tinted with the hue of a real interaction, then is the physician-writer guilty of thieving (3) from her patients for the benefit of her characters?

Photography by its very nature multiplies the issues privacy, confidentiality, and authorship. More than a sketch or a painting, a photographic image implicitly tends to be equated with reality. What can be more real than what we see with our own eyes? Some practitioners of the art even gave photography the power of being more "authentic" than reality itself. Photographer Edward Weston spoke of achieving "the stark beauty that a lens can so exactly render… without interference of artistic effect." (4) But the whole reason photographs are powerful and bewitching is precisely due to this "artistic effect" coupled with the cultural and social contexts in which the picture is made and subsequently viewed.

In photographing my patients and their home environment, I am harnessing their aesthetic to fuel my own. They arranged their clothes, their bed, their couch, and their paintings a certain way, and all I do is respond to the scene visually by composing a photograph in a way that was interesting to me.A Again, I am facing an issue of authorship akin to that of the thieving physician-writer.A And even worse, in terms of confidentiality, what can be more sacred than a patient-physician interaction in the privacy of the patient's own home?

Embracing the Gray Areas: Incorporating Ethical Conflict into the Work

All these issues are troubling to me, and yet I continue to photograph. My thinking is precisely that if I ever cease to be troubled by what I do, then I will have reached the point at which it would be morally wrong from me to continue the project.A I try to navigate this ethically grey area by choosing my subjects carefully, by seeing my patient as my collaborator, and by being candid about my motives.A Transparency is key for achieving what I would call "artistic" informed consent (there is no form to sign for this one.)

I enjoy showing my patients and their caregivers the images we make. Overwhelmingly, the response is one of amusement, and the snapshots tend to get a lot more attention than the "serious" work. But occasionally there is a deep appreciation of being shown their own environments in a different way: "I didn't know it looked like that!" "Who would have thought my room looks so nice?" They may never enjoy the print for the same reasons I do, but at least we will have reached an understanding that there is some meaningful value in it for both of us.

Ultimately, the validation comes from seeing the growing Ana Blohm collection of photographs on the walls of my patients' homes.

References
(1)See for example the work of Eugene Richards and Nicholas Nixon
(2)Charon, Rita. Narrative Medicine: form, function, and ethics. Annals of Internal Medicine. 134:83-7 (2001).
(3)Baruch, Jay. The Story Always Comes First. Commentary in Literature, Arts, and Medicine Blog. October 17, 2008.
(4)Weston, Edward, In Newhall, Nancy, ed. The Daybooks of Edward Weston, Volume II, p. 147. (New York:Aperture) 1973.

Editor’s note: For a video of the work of The Visiting Doctors Program, featuring Dr. Blohm, see: www.aarp.org/family/caregiving/articles/doctor_in_the_house.html

The Mirror and Self-Knowledge

January 22, 2009 at 10:22 am

Using the internet for self-knolwedge

Commentary by David Biro, MD, PhD, Assistant Clinical Professor of Dermatology at SUNY Downstate Medical Center and author of One Hundred Days: My Unexpected Journey from Doctor to Patient. His new book, The Language of Pain, will be published by Norton in 2009.

Illness like any experience that deviates from the norm (in this case, the norm of health) triggers a search for meaning: something is wrong with me, I must find out what is happening. Since the source of illness lies within us, we instinctively turn to introspection: let's try to see what's happening. But immediately we encounter obstacles. There is the opaque surface of the body that literally prevents us from seeing inside. And more significantly an entire nervous system designed specifically to limit (thankfully) our engagement with the body and continually point us in the opposite direction. Even consciousness - that quintessentially inner and private realm - constantly reaches outwards towards the objects in the external world that we think about, desire, and fear.

While not explicitly offering illness as a case-in-point, many contemporary thinkers including Sartre, Foucault and Lacan have consistently undermined the traditional approach to self-knowledge by introspection. Instead, they emphasize the importance of the Other in understanding the self. We rely, for example, on other people like doctors, who, in turn, have studied other bodies (both dead and alive). We rely on things like books and the Internet which provide information about ourselves. And of course we rely on that ancient means of self-reflection, the mirror, which allows us see ourselves from perspectives otherwise unobtainable.

The Case of Frigyes Karinthy

Frigyes Karinthy was a well known Hungarian writer of the early 20th century who developed a brain tumor. The tumor, however, would not be diagnosed by one of the many specialists he consulted with but rather quite remarkably by himself, a layman who never went to medical school. Himself, that is, with the help of a metaphorical mirror.

The first sign of trouble came with the trains roaring in his head. Next the sense that pictures and tables were moving when they weren't. Then there were headaches and fainting fits. One doctor attributed the symptoms to an ear infection. Another to nicotine poisoning and a third to humiliations suffered in early childhood. In each case none of the prescribed interventions helped, and for a while Karinthy was determined to live with the trains and hallucinations, belittling their importance as his doctors did. But when they persisted and new symptoms developed, he could deny them no longer. They were interfering with every aspect of his life. Regardless of what the doctors thought, something was wrong. Very wrong.

Proof of his conviction would come unexpectedly. Karinthy was visiting the clinic where his wife, a doctor, worked at the time. Accompanying her on rounds, Karinthy stopped at the bed of a young man, transfixed by the expression on his face. It looked familiar, he thought. The man has a brain tumor, his wife grimly informed him, and is terminal. Ah, remembered Karinthy, he had seen that face before, in a friend who died many years ago of the same condition. But Karinthy wasn't entirely satisfied. He continued to be haunted by the sight. It reminded him of someone else too, he was sure.

Later on it hit him with the full force of the roaring trains in his head:

I had suddenly stopped dead in the gateway, like the ox I had seen unwilling to enterA the slaughter-house. At that moment, it had flashed into my mind. I remembered. The pale, vacant face of the dying man reminded me of my own expression as I had seen it lately in my mirror while shaving. I took two steps, then stopped again. With a foolish grimace, like a man who pretends to belittle some achievement he is boasting about, I said to my wife: "Aranka, I've got a tumor on the brain."(1)

Aranka dismissed her husband's epiphany as crazy. But she was soon proven wrong. Fortunately, things would turn out well for Karinthy. He was successfully operated on by the famous Swedish neurosurgeon Olivecrona. Afterwards, he returned to his writing career and publish his best work yet, a memoir of his fascinating encounter with illness, A Journey Round My Skull.

Doppelgangers in Pain

Karinthy is not unique in deriving insight about his illness from another person. Many patients instinctively gravitate toward other patients with similar diagnoses. How is illness playing out in them and what in turn might it mean for me? Indeed, this is a recurring theme in the increasingly popular genre of illness narrative or pathography. Whether they find fellow sufferers in the clinic or in support groups or on the Internet, patients are constantly on the lookout for what Alphonse Daudet, another writer-patient, once called his "doppelgangers in pain."

On the one hand, these significant others are an instant source of support and sympathy in a world that tends to alienate and isolate the sick. "My doppelganger," writes Daudet during his stay at a French sanatorium, "the fellow whose illness most closely resembles your own. How you love him, and how you make him tell you everything!" At the same time, they offer a vital means to self-knowledge. Towards the end of his life, Daudet could no longer walk steadily. The ataxia caused by syphilitic damage to his cerebellum resulted in a clumsy, halting gait. But the only way for him to see what he looked like was to observe himself in a mirror. Or better yet in another patient with the same problem:

I see him in my mind's eye, putting one foot down carefully before the other, but still tottery: as if walking on ice. Sad. (2)

No doubt Daudet feels sad for his doppelganger. But equally sad, perhaps more so, for himself and what has become of him.

Nor do sufferers restrict "finding" themselves in human beings that literally look like them. Grieving the loss of his lover who died of AIDS, Mark Doty finds solace and insight from a seal he spies in Cape Cod Bay during a walk. Apart from the group and alone, distressed and exhausted, the seal "conveys a kind of helplessness and desolation" that cuts Doty to the core. Not only because he feels sympathy for another sufferer but because he sees himself in the seal, the inside of his grief-stricken mind suddenly visible (3). Others find themselves in the fictional characters of books they read, in the cadences of songs they listen to, and in the sky that seems to mirror their emotions. All of which should be understood not as a passive "stumbling" upon the self but as an activity that requires a degree of imaginative or metaphorical work on our parts. We project ourselves onto things in the world - other people, seals, or songs -so we that could see and understand ourselves.

Mirror Neurons

As it turns out, the human brain may be hardwired to engage in projections of this sort. One of the most exciting, recent discoveries in science has been the mirror neuron. First isolated in monkeys and later found to exist in human beings, these neurons (and groups of neurons) are active not simply when we are moving and emoting but when we observe others moving and emoting. Our brains, as it were, re-enact or mirror the movements and emotions of other people as we watch them. Although scientists are still working out the implications of this extraordinary finding, it is almost certain that the brain's mirroring system contributes to the profoundly social nature of human beings and may well be responsible for many of our greatest collective achievements: language, social institutions, and culture (4).

Many scientists also believe that neuronal mirroring can reflect in two directions, illuminating both the external world (of others) and the internal world (of self). By constantly observing and imitating others, we not only learn about them but about ourselves: How we see and think of ourselves; the meanings we ultimately give to our most intimate and "unsharable" experiences like pain; indeed the ongoing project of human creation in general as it works to fill the world with things that possess the capacity to reflect our humanity (5).

Thinkers like Sartre, Foucault and Lacan may have been exquisitely prescient. Mimesis may well turn out to be a prerequisite or stepping stone to self-knowledge. We observe, reproduce, impose patterns, and thereby understand. We can do this with objects that happen to cross our field of vision like the patient encountered by Friges Karinthy or the seal by Mark Doty. But we could also do this on a more sophisticated level. If a potential doppelganger doesn't exist we can invent one. As Alphonse Daudet does in his dream of the boat with the damaged keel (mirroring his diseased keel-spine). And as many artists do in their poems and paintings. After finishing his masterwork, Flaubert is famously reported to have said of his creation: Emma Bovary, ces't moi. The re-production leads to recognition. The same thing that painters do perhaps more self-consciously in their self-portraits and in the case of Frida Kahlo, her double self-portraits. Here the dictum of philosopher Nelson Goodman is most transparently realized: Comprehension and creation go on together (6).

References

(1)Friges Karinthy, A Journey Round My Skull (London: Faber and Faber, 1938), p.59
(2)Alphonse Daudet, In the Land of Pain (New York: Knopf, 2002), p.56-7.
(3)Mark Doty, Heaven's Coast (New York, HarperCollins, 1996)
(4)Marco Iacobini, Mirroring People: The New Science of How We Connect with Others (New York: Farrar, Strauss and Giroux, 2008)
(5)Elaine Scarry, The Body in Pain (New York: Oxford, 1985)
(6)Nelson Goodman, Ways of Worldmaking (Indianapolis: Hackett Publishing, 1978)

 

A Time For Celebration And Contemplation: Inauguration Day, 2009

January 18, 2009 at 3:49 pm

Fireworks exploding in the night sky over Newcastle

Commentary by Felice Aull, Ph.D., M.A., Founding editor, Literature, Arts, and Medicine Database and editor, this blog.

It seems these next few days require a blog entry that digresses from our usual sequence of invited essays. The moment is of course historic. The moment is exhilarating. The moment is sobering.

In an earlier commentary, written just before Barack Obama was nominated to be the Democratic candidate for president of the United States, I invoked his candidacy and family background to draw attention to the fallacy of race as a biologic concept, and to problematize ongoing efforts toward race-based medicine. Now I invoke the onset of Obama’s presidency not only to celebrate his achievement and the barriers that have been broken, but also because he is an author, an educator, a thinker who does not see the world in Manichaean terms, and who counts among his friends a poet’s poet —Elizabeth Alexander, the scholar he asked to write an inauguration poem. I think I can even relate this moment to medical humanities!

I am now reading Obama’s autobiography, Dreams from My Father, published in 1995. I’m only up to chapter 5, but it is clear that this man, long before he sought the presidency, was self-reflective and could articulate the complexity of his personal feelings as well the complexity of the social dilemmas he was forced to confront. Aren’t these insights and skills what we in medical humanities are trying to encourage? How refreshing to have such a person heading our government.

How refreshing, also, that the President-elect chose a contemporary who is an award-winning poet, a scholar in African American and American studies (who will chair the department of African-American studies at Yale University later this year), and who has been honored by Yale for her teaching abilities. Here are the last few lines of one of her poems:

Poetry (and now my voice is rising)

is not all love, love, love,
and I’m sorry the dog died.

Poetry (here I hear myself loudest)
is the human voice,

and are we not of interest to each other?

from Ars Poetica #100: I Believe
In American Sublime

Are we not of interest to each other? Such also is the work of medical humanities-to be interested in, listen to, and hear the other.