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Illness and Reconciliation

In a previous blog post, I discussed the crucial role that relationships and community play in human flourishing. Indeed, our need to connect with each is so profound that conflict in our most important relationships can be a source of great distress. This is particularly true when we endure illness. As Daniel Sulmasy writes,

“As their bodies bend and break, dying patients are somehow reminded of the brokenness in their relationships with others and of their deep need for the healing of reconciliation.”[1]

In David Schenek’s book Healers, a physician tells the story of

“a mid-80s lady admitted to our inpatient unit with advanced GI cancer. There was no treatment, and she didn’t want it anyway. She progressed as expected, and she had stopped taking food or liquids. And then she lapsed into an actively dying phase.”

 

The physician explained that

“I had a very frank talk with the son and grandson, and they wanted to be at the bedside when she takes her last breath. So two, three days passed—four days come, five days passed. . . This went on a week, a week and a half, then two weeks. Defying physiology. We were at a month of not having so much as a drop of water, and yet her heart was beating, barely. No palpable blood pressure. But if watched, every fifteen seconds her chest rose. She was still breathing. . . . Then a friend of the family came in. She nudged me and said, ‘What’s going on?’ I said ‘I don’t know. She won’t die. Maybe you can help.’ She said, ‘You know she has a daughter. They parted 25 years ago. They’d had some disagreements, and then parted, and it wasn’t at all favorable.’ I wondered whether they could resolve it, even though they have not spoken to each other in 25 years, and I said. ‘Do you have any way of getting ahold of her?’ She replied, ‘I haven’t had any contact with her in maybe 10 years, but here is the number I have.’ So I walked in the room, and I called from the bedside phone. A lady answered the phone. I said, ‘This is the doctor from hospice. Is this so-and-so?’ ‘Yes.” ‘I am so glad to be able to get you. I just want you to know that I have been taking care of you mom. He developed cancer some months ago, and she has been declining every since. She is very close to the end of her life now. I just found out that you two had parted some years ago, perhaps not on the best of terms. I know in those circumstances some things can get left unsaid. Some things you might want to tell her and talk to her about.’ She said, ‘Well, yeah.’ I said, ‘You need to understand that she is very close to the end of life. She is not responsive at all. But I am going to put the phone up to her ear to give you a chance just to say whatever you think you might want to say to her. I don’t know if she can physically hear you. But I think she will know you are here.’ So I put the phone down by the patient’s ear. I can hear chattering—kind of wanted a speaker phone. What do you say to somebody after twenty-five years? . . After about five minutes, I see tears rolling down this lady’s face. It was a very powerful moment—because logically, where is the substrate for this? She has no water in her body. . . . So the tears were streaming down her face. I heard the chattering stop, and I took the phone back and described to her daughter what I just saw. ‘I want you to know that she heard what you said, and that her tears flowed. This is a very healing process for her. I thank you very much.’ I hung up the phone—and five minutes later she was dead.”[2]

The physician concluded that “clearly there something she needed to complete in her journey toward health. She was not going to die until that was done.”

 

[1] Sulmasy, D. Spiritual Issues in the Care of Dying Patients, JAMA, Sept. 20, 2006—Vol 296, No 11

[2] Schenek, David and Larry Churchill. (2012) Healers, Oxford University Press

 
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Posted by on June 20, 2014 in Uncategorized

 

How Should Physicians Address Spiritual Issues?

In my previous blog post, I argued that physicians and other practitioners have an ethical imperative to address patients’ spirituality. This raises the question of how they are to do so. It is to this topic that I will now turn.

 

An initial question is the nature of the practitioner’s role in addressing patients’ spiritual needs. Dr. Harold Koenig, a leading authority of the subject of spirituality and health care, states the practitioner’s role is to take a spiritual history and orchestrate resources to meet those needs.[1]

 

In a spiritual history, practitioners ask patients about their spirituality and their spiritual needs. Koenig writes that “taking a brief spiritual history if necessary in order to 1) understand the role that spiritual beliefs play in the patient’s coping with illness, 2) understand how spiritual beliefs may be a source of stress or distress for patients, 3) become familiar with the patient’s religious beliefs as they relate to decisions about medical care, 4) become aware of how much those medical decisions are likely to receive from the patient’s social network (which is often their faith community), and 5) identify spiritual needs that could affect the patient’s health outcomes or use of health services.” He also writes that taking a spiritual history “sends a message that this aspect of the patient’s identity is recognized and respected by the health practitioner and that the patient is valued as a whole person.” [2]

 

Koenig suggest the best times to take a spiritual history are “1) when taking the medical history during a new patient evaluation, 2) when taking the medical history while admitting a patient to the hospital, nursing home, hospice, or palliative care setting, 3) when doing a health maintenance visit as part of a well-person evaluation, and 4) whenever the medical situation calls for it.”[3]

 

In clinical situations that are rushed, Koenig suggest the following question: “Do you have any spiritual needs or concerns related to your health?” This acknowledges to the patient that this is an area that the heath practitioner is concerned about and opens the door to future conversations.[4] Christina Puchalski has developed an instrument called FICA to facilitate taking a more in-depth spiritual history.[5] F stand for faith and belief.This includes questions such as, “Do you consider yourself spiritual? What gives your life meaning? Do you have spiritual beliefs that help you cope with stress?” I stands for importance of the person’s spirituality. This can be assessed this by asking questions such as”What importance does your spirituality or your beliefs have in our life? Have your beliefs influenced how you take care of yourself in this illness? C stands for the patient’s community support. To assess this, practitioners can ask: “Are you part of a spiritual or religious community? Is this of support to you and how? Is there a group of people you really love or who are important to you?” A stands for how practitioners can address the patient’s spirituality.Puchalski recommends a question such as “How would you like me, your healthcare provider, to address these spirituality issues in your healthcare?”

 

After taking a spiritual history, a clinician’s second role can be to orchestrate spiritual resources for the patient.   This includes, most importantly, referring patients to spiritual care professionals such as chaplains and clergy. In addition, based on the patient’s wishes, practitioners can work with spiritual professionals to provide helpful spiritual support such as inspiring music and reading, meditation, and support groups

 

When taking a spiritual history, it is important that practitioners know their limits and be clear about certain boundaries. First, they must respect patients’ privacy. If they don’t want to talk about their spirituality, practitioners need to honor that. Secondly, practitioners must be vigilant about not imposing their beliefs on patients since doing so would be abusing their authority in an especially vulnerable time in patients’ lives. Finally, a spiritual history is not the same as an in-depth spiritual assessment. For intensive spiritual counseling and spiritual crisis, practitioners should refer patients to chaplains who have skills and training in this realm.

 

[1] Koenig, Harold. (2013) Spirituality in Patient Care: Why, How, When, and What. Templeton Press

[2] Koenig, Harold. (2013) Spirituality in Patient Care: Why, How, When, and What. , Templeton Press

[3] Koenig, Harold. (2013) Spirituality in Patient Care: Why, How, When, and What. , Templeton Press

[4] Koenig, Harold. (2013) Spirituality in Patient Care: Why, How, When, and What. , Templeton Press

[5] Puchalski, C. Taking a Spiritual History Allows Clinicians to Understand Patients More Fully. Journal of Palliative Medicine 3 (2000): 129-37

 
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Posted by on June 11, 2014 in Uncategorized

 

Should Physicians Address Patients’ Spirituality?

There is a growing recognition in medical education and practice that the spiritual component of human existence must be recognized and addressed. The American College of Physicians has concluded that physicians are obligated to attend to all dimensions of suffering—the physical, psychosocial, spiritual, and existential.[1] Similarly, the Joint Commission on Accreditation of Healthcare Organizations (JAHCO), which accredits hospitals, recognizes that spiritual concerns are often important for patients and that hospitals should provide spiritual care. [2] At the same time, some writers have expressed reservations about this movement to incorporate spirituality into health care. There is, for instance, concern that this could be a subtle effort to push religious ideas and values on to patients and providers.   Others question why medicine should be concerned about the spiritual aspect of human experience.[3] After all, what special expertise do physicians and other health professionals have in the area of spirituality? Even if it is granted that health care providers should recognize patients’ spiritual needs, how are they supposed to practically respond to them? This would seem to be a particularly complicated question to answer in our increasingly pluralistic society.

In this blog post, I will offer three reasons why physicians and other health practitioners should recognize and address the spiritual component of their patients’ lives.

The first reason is that understanding a patient’s spirituality is an important part of helping clarify and fulfill his or her goals of care. This is because a patient’s spirituality may significantly affect medical decision-making. For instance, a 2003 study asked patients with lung cancer to rank the importance of seven factors in their medical decision-making. The seven factors were the oncologist’s treatment recommendation, ability of treatment to cure disease, side effects, family doctor’s recommendation, the spouse’s recommendation, children’s recommendation, and faith in God. The study revealed faith in God ranked second importance only after their oncologist’s recommendation.[4]

A number of studies show that higher religiosity is associated with wanting more aggressive care at the end of life.   For instance, a study published in the Journal of the American Medical Association showed that “positive religious coping” (as defined by a validated tool called RCOPE) in patients with advanced cancer is associated with receipt of intensive life-prolonging medical care near death.[5] Although the study does not address the reason for this association, it suggests that spirituality may play an important role in patients’ medical decisions.

A second reason health practitioners must pay attention to spirituality is that doing so improves patients’ quality of life. A study of 1610 patients with cancer or HIV found that spiritual well-being (as measured by Functional Assessment of Chronic Illness Therapy Spirituality Scale) was associated with quality of life to the same degree as physical well-being and emotional well-being. The study also found that patients with high levels of spiritual well-being were better able tolerate symptoms such as pain.[6]

If spiritual well-being is associated with a higher quality of life, it stands to reason that supporting patients’ spiritual well-being would improve their quality of life. This was shown to be the case in a study of patients with advanced cancer published in the Journal of Clinical Oncology. It revealed that higher overall spiritual support was positively associated with patient quality of life.[7]

A third reason health practitioners must attend to spirituality is that doing so is part of providing holistic care. Dame Cicely Saunders, who is often considered the founder of the modern hospice and palliative care movement, taught that suffering encompasses the physical, social, psychological, and spiritual parts of a person’s life.[8] Betty Ferrel poignantly speaks to this point when she writes, “The (doctor) who dares to ask about spirituality imparts a vital message to the patient that they are being care for by someone who has not forgotten that a broken patient remains a whole person and that healing transcends survival.”[9]

 

 

 

[1] Lo. B & Tulsky, J. (1999) Discussing Palliative Care with Patients. ACP-ASIM End of Life End-of-Life Care Consensus Panel. Annals of Internal Medicine, 130, 744-749.

[2] Joint Commission on Accreditation of Healthcare Organizations (JAHCO). (1999). Comprehensive accreditation manual for hospitals (CAMH): The official handbook, patient rights, and organization ethics. Update 3

[3] Sloan, R. (2008) Blind Faith: The Unholy Alliance of Religion and Medicine. St. Martin’s Griffin

[4] Silvestri GA, Importance of faith on medical decisions regarding cancer care. J Clin Oncol. 2003 Apr 1;21(7):1379-82.

[5] Phelps, et al. Religious Coping and Use of Intensive Life-Prolonging Care Near Death in Patients with Advanced Cancer, JAMA; 301 (11): 1140-1147

 

[6] Brady, et al. A Case for Including Spirituality in Quality of Life Measurement in Oncology. Psycho-Oncology. 8: 417-428

 

[7] Balboni, et al. Religiousness and Spiritual Support Among Advanced Cancer Patients and Associations with End-of-Life Treatment Preferences and Quality of Life. J Clin Oncol. 25 (5): 555-560.

 

[8] Chi-Keong Ong, Embracing Cicely Saunders’s concept of total pain, BMJ. Sep 10, 2005; 331(7516): 576–577

[9] Ferrell, B. Meeting Spiritual Needs: What Is an Oncologist to Do, J Clin Oncol. 25 (5): 467-468

 

 
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Posted by on May 23, 2014 in Uncategorized

 

Health and Human Connection

In his book The Art of Loving, Eric Fromm wrote that “the deepest need of man is to overcome his separateness, to leave the prison of his aloneness.” In the Bible, after forming Adam from the dust of the ground and breathing into his nostrils the breath of life, God declares that something is missing: “It is not good for the man to be alone.”

 

A number of scientific studies verify that a sense of connection and belonging are crucial for humans to develop, function, and flourish. For instance, The Bucharest Early Intervention Project (BEIP) followed 136 of the tens of thousands of Romanian babies who were abandoned and orphaned as a result of the birth control ban during the regime of Communist dictator Nicolae Ceauşescu. The children were randomized to foster care or the institutional care of an orphanage. Researchers at Harvard University, the University of Maryland and Tulane University have published over 50 papers that show the orphans who remained in institutions have significantly more behavioral and neurological deficits than those who went to families.[1] A recent study used magnetic resonance (MRI) to scan the brains of 74 of the Bucharest children, now ages 8 to 11, and found that brains of children who had remained in institutions had less white matter than orphans who were placed in foster care or children living with their own families.[2]

Family, workplaces, and spiritual communities are some of the places where we form the relationships that give coherence and meaning to our lives. With illness, the infirmities of age, and hospitalizations, people are often removed from these sources of community. For instance, an analysis of the Coping with Cancer Study found a significant decrease in attendance of religious services after individuals received their cancer diagnosis. [3] This suggests patients’ ties to their spiritual communities decreased when support was most needed.

 

In my own practice, I sometimes see older people suffering in loneliness. Their family members seem too busy with their own lives to visit. Many of their friends have died or are incapacitated. To get out into the world requires driving and getting on the road with younger, faster drivers is an anxiety-provoking ordeal.

 

We often conceive of health care as consisting of doctors and nurses, medicines and surgeries, hospitals and clinics. But, health or well-being is a holistic concept. It involves, among other things, the state of a person’s mind, body, relationships, finances, and spirituality.  

 

Accordingly, one of the most important ways a society can nourish the health of its citizens is fostering the creation of relationships and authentic communities. It is especially important to help people at risk for becoming isolated—those with sickness, infirmity, and disabilities—find the human connection we all need.

 

[1] Bos, Karen J., Fox, N., Zeanah, C.H., & Nelson, C.A. (2009). Effects of early psychosocial deprivation on the development of memory and executive function. Frontiers in Behavioral Neuroscience, 3, 1-7. Nelson, C.A., Furtado, E.A., Fox, N.A., & Zeanah, C.H. (2009). The deprived human brain. American Scientist, 97, 222-229

[2] Sheridan, M. Variation in neural development as a result of exposure to institutionalization early in childhoodProc Natl Acad Sci U S A. Aug 7, 2012; 109(32): 12927–12932.

[3] Balboni, T. Religiousness and Spiritual Support Among Advanced Cancer Patients and Associations With End-of-Life Treatment Preferences and Quality of Life,J Clin Oncol. Feb 10, 2007; 25(5): 555–560.

 
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Posted by on May 22, 2014 in Uncategorized

 

Encouraging Empathy

Here is a policy brief I wrote on how medical training tends to erode empathy and what can be done about it.

WHAT’S THE ISSUE?

Sir William Osler described medicine’s aims as “to cure sometimes, to relieve often, to comfort always.” To fulfill this profound calling, physicians must embody empathy. They must seek to understand what their patients are experiencing and imagine what it’s like to “walk in their shoes.”

 

Why is empathy such an important component of care? First, to diagnose a patient’s ailment, the physician must understand what the patient is experiencing and the context in which the problem is occurring.  Secondly, the very act of the physician listening to a patient’s story with genuine concern can itself be tremendously healing.  Third, only by seeking to understand a patient’s perspective is a physician able to provide care that fits the patient’s goals, values, and overall situation.

 

While an empathic impulse often leads people to enter medical school, studies show that students’ empathy tends to decrease as they progress through their education. [1]

As physician and essayist Danielle Ofri writes, “something in our medical training system serves to stamp out whatever empathy students bring with them on day one.”[2]

 

WHAT’S THE BACKGROUND?

 

Multiple theories have been proposed to explain the consistently observed decrease of empathy in medical students as they progress through their training.   One overarching cause is that students and their supervising physicians are often too overwhelmed with demands on their time, energy, and attention to focus on patients. A second cause is the lack of role models who instill the value of empathy in their students.  During their clinical rotations, medical students spend most of their time with interns and residents whose empathy is strained by the large volume of work they are expected to perform.  In this way, an ethic of efficiency over empathy is modeled for medical students. A third factor undermining students’ empathy is the emphasis on technology present at tertiary care centers where medical students train.  In these settings, the results of high-tech testing often receive more of the physicians’ and students’ attention than the actual patients in hospital beds.[3]

 

 

WHAT’S BEING TRIED?

 

Several solutions have been proposed and tried to ameliorate the erosion of empathy during medical education.  An increasingly popular approach is changing how the clinical year of medical school is arranged. Traditionally, students rotate through 2-8 week rotations of different fields of medicine such as pediatrics, internal medicine, obstetrics, and general surgery.  During these rotations, students’ capacity to become quickly competent in requisite knowledge and skills is assessed by supervising physicians. Just as a student develops familiarity and confidence in one rotation, he or she is switched to another one. This system often leaves students feeling too harried, inadequate, and overwhelmed to focus on patients and their needs. Thus, a growing number of medical educators are eliminating block rotations and instead utilizing an approach based on longitudinal relationships between medical students and patients.  In this approach, each medical student is assigned a panel of patients who they accompany to clinical encounters throughout the clinical year. As students follow their patients they learn about different fields of medicine, while getting to know the patients as persons who are more than their health conditions. In a study at Harvard Medical School, students who participated in a longitudinal program were found to have had more rewarding and humanizing learning experiences than their peers on traditional block rotations. [4] Nonetheless, enthusiasm for the longitudinal approach has been tempered by the concern, expressed by some residency directors, that it does not prepare students as well for residency as the traditional block method does.  In addition, it is much more difficult and complicated for schools to organize a longitudinal clinical curriculum than one using block rotations.

 

WHAT I PROPOSE

 

Strategies for helping medical students retain their empathy can be categorized into two types.  The first approach is changing the features of the medical training system that erode students’ empathy.  The second is to equip students to maintain their empathy even when myriad factors work to undermine it.  You might call this latter approach fostering empathic resilience.

 

Changing the System

As previously stated, an increasingly popular approach for reforming the medical training system to make it less erosive of empathy is changing the clinical year from a block method to a longitudinal one. But since many medical schools do not feel comfortable making this complicated change, it is worth considering alternative or complementary strategies.  One idea is to eliminate or at least deemphasize grading and evaluations in medical education.  Right now many medical students are so focused on achieving high marks in their courses that they neglect to give full attention to their patients. If grades and evaluations must remain, a greater emphasis should be placed on the empathy medical students demonstrate in their interactions with patients and staff.  In addition, the evaluation process should focus on helping students develop into outstanding physicians, rather than being a means of punishing or shaming students who are not living up to expected standards.

 

Another approach is decreasing the volume of work residents and medical students are expected to perform on clinical rotations.  If this change were made, the expectation would be that residents and students would spend the leftover time getting to know their patients in greater depth.  Less harried and overwhelmed residents would serve as better empathic models for the students they are supervising.

 

Since empathy is a characteristic often best learned by modeling, clinical faculty who will serve as inspiring examples of empathy should be valued.  As part of their faculty development, attending physicians should receive training in how to increase their own empathy and to model it for trainees.  When selecting and promoting clinical faculty, greater weight should be placed on the empathy that attending physicians demonstrate in their interactions with patients, students, and staff. Does the physician show genuine concern for and interest in the patients in his or her care? Or is the focus merely on test results, treatments, and getting the patient discharged?

 

Bolstering Empathic Resilience

In the culture of many hospitals and clinics, the supreme, overarching value is getting the day’s work done. The implicit idea is that once doctors plough through the workday’s demands, they can then start really living their lives.  Little effort is made to pay attention to and be mindful of the meaning of the work at hand. To combat this culture of efficiency students should be offered training in mindfulness.[5] Just as mindful eating means savoring the food you eat, so students could be trained to be attentive to the meaning of the work they are doing.

 

Mindfulness should also be encouraged through students writing about their clinical experiences in ordinary language. In this way, a coherent narrative can be formed out of the blur of the day’s clinical activity. In the Humanism and Professionalism Program at the Robert Wood Johnson Center Medical School, students meet regularly in small groups with mentors to discuss journal entries they write about their clinical experiences. In this way, they explore topics such as tribulations of patient care, positive and negative role models they are exposed to, and the specific challenges of maintaining humanism and professionalism in situations that often seem expressly designed to chip away at these values.  Students are also assigned readings that promoted reflection on the meaning and purpose of the practice of medicine.  To determine if this program was effective in helping students retain their empathy, two consecutive classes of medical students took a validated test of empathy before they started this program in their clinical year and then again at the end of the year. On average, researchers found no decline in empathy scores for both classes. The students in other studies using the same measure of empathy showed a decline after they finished their clinical rotations.[6]

 

Another means of enhancing students’ empathy is improving their communications skills.  One model for doing so emphasized the development of three basic communication skills namely, “recognition” of patient’s negative emotions, concerns, and inner experiences; “exploration” of these emotions, concerns, and experiences; and “acknowledging” them to generate a feeling in the patient of being understood.[7] Along these lines, students should be taught how to respond when patients try their ability to empathize. To accomplish this, facilitators and students could watch and discuss videos of physicians responding in a professional, healing manner to patients who are angry, worried, loquacious, not adherent to recommendations, and challenging historians. Students could also be videotaped responding to standardized patients presenting with similar scenarios. They could then receive feedback from the patients and faculty-members about how they might communicate more empathically.

 

WHAT’S NEXT?

 

Medical schools should consider taking the following steps to make their training system less erosive of students’ empathy.

 

1)   Change the methods of student assessment.  Place less emphasis on students’ grades and evaluations. The purpose of assessing students’ performance should be enabling them to be the best physicians possible. Student evaluations should not be a means of sorting out who will qualify for the most sought-after residency programs. This creates a competitive, cut-throat culture that is not conducive to empathy.

2)   Decrease the volume of work residents and medical students are expected to perform on clinical rotations.  Expect and ensure that trainees use the leftover time to get to know patients in greater depth.

3)   Promote empathy is clinical faculty.  Provide faculty development that teaches supervising physicians how to increase their own empathy and model it for trainees.  Select and promote clinical faculty who exemplify empathy in their interactions with patients, students, and staff.

4)   Provide training in mindfulness for students and their supervising physicians.

5)   Encourage students to write about their clinical experiences, creating narratives that reveal the meaning of their work.

6)   Equip students with communication skills that will enable them to better empathize with patients.

 

 

[1] B.W. Newton et al.  “Is There a Hardening of the Heart During Medical School?” Academic Medicine 83 (2008): 244-49; M. Hojat et al., “The Devil is in the Third Year: A Longitudinal Study of Erosion of Empathy in Medical School,” Academic Medicine 84 (2009): 1182-91; M. Neumann et al., “Empathy Decline and Its Reasons: A Systematic Review of Studies with Medical Students and Residents,” Academic Medicine 86 (2011): 996-1009

[2] Ofri, Danielle. What Doctors Feel: How Emotions Affect the Practice of Medicine. p. 30 Beacon Press, 2013.

[3] Verghese, Abraham. Culture Shock—Patient as Icon, Icon as Patient. New England Journal of Medicine. December 25, 2008. 359;26

[4] Chen, Paulene.  Reinventing the Third-Year Medical Student, New York Times, April 19, 2012.  http://mobile.nytimes.com/blogs/well/2012/04/19/reinventing-the-third-year-medical-student/

[5] Dobkin, Patricia & Tom A Hutchinson.Teaching mindfulness in medical school: where are we now and where are we going? Medical Education, 2013; 47: 768–779

[6] Rosenthal, S. Humanism at heart: preserving empathy in third-year medical students. Acad Med. 2011 Mar;86(3):350-8.

[7] Suchman, A.L. Markakis, K., Beckman, H.C. & Frankel, R. (1997). A model of empathic communication in the medical interview. JAMA, 277, 678-682.

 

 
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Posted by on March 28, 2014 in Uncategorized

 

The Power of Stories

I cannot shake the conviction that fiction, whether in literature, movies, or theater is of lesser value than learning “real” information about the world.  Thus, my reading tends to consist mostly of non-fiction books such memoirs or works of history, biography, philosophy, and theology.  And unless I find a movie to be truly extraordinary, I often leave the theater with the sense that my time could have been better spent doing something else. 

 

At that same time, I see great errors in this way of thinking.  Fictional stories also provide information about the world.  The works of writers such as Shakespeare, Homer, and Tolkien render greater insight into reality than today’s news, much of which will be forgotten tomorrow. 

 

All of this comes to mind as I just finished reading journalist Ron Suskind’s piece Reaching My Autistic Son Through Disney in the New York Times.  Suskind begins by sharing his son Owen’s story.  He writes

“In our first year in Washington, our son disappeared.  Just shy of his 3rd birthday, an engaged, chatty child, full of typical speech — “I love you,” “Where are my Ninja Turtles?” “Let’s get ice cream!” — fell silent. He cried, inconsolably. Didn’t sleep. Wouldn’t make eye contact. His only word was “juice.”

 

My wife, Cornelia, a former journalist, was home with him — a new story every day, a new horror. He could barely use a sippy cup, though he’d long ago graduated to a big-boy cup. He wove about like someone walking with his eyes shut. “It doesn’t make sense,” I’d say at night. “You don’t grow backward.” Had he been injured somehow when he was out of our sight, banged his head, swallowed something poisonous? It was like searching for clues to a kidnapping.

 

After visits to several doctors, we first heard the word “autism.” Later, it would be fine-tuned to “regressive autism,” now affecting roughly a third of children with the disorder. Unlike the kids born with it, this group seems typical until somewhere between 18 and 36 months — then they vanish. Some never get their speech back. Families stop watching those early videos, their child waving to the camera. Too painful. That child’s gone.”

Owen became obsessed with Disney movies.  When he regained his ability to speak, it was in the form of repeating lines from these films.  Then at age 6 1/2, a breakthrough came.  Owen’s older brother Walt was celebrating his 9th birthday.  Suskind writes that

After roughhousing with buddies in the backyard at the end of his party, Walt gets a little weepy. He’s already a tough, independent kid, often the case with siblings of disabled kids. But he can get a little sad on his birthdays.

 

As Cornelia and I return to the kitchen, Owen walks in right behind us.

He looks intently at us, one, then the other. “Walter doesn’t want to grow up,” he says evenly, “like Mowgli or Peter Pan.”  We nod, dumbly, looking down at him. He nods back and then vanishes into some private reverie.

 

It’s as if a thunderbolt just passed through the kitchen. A full sentence, and not just an “I want this” or “Give me that.” No, a complex sentence, the likes of which he’d not uttered in four years. Actually, ever.

We don’t say anything at first and then don’t stop talking for the next four hours, peeling apart, layer by layer, what just happened. Beyond the language, it’s interpretive thinking that he’s not supposed to be able to do: that someone crying on his birthday may not want to grow up. Not only would such an insight be improbable for a typical 6-year-old; it was an elegant connection that Cornelia and I overlooked.

 

It’s as if Owen had let us in, just for an instant, to glimpse a mysterious grid growing inside him, a matrix on which he affixed items he saw each day that we might not even notice. And then he carefully aligned it to another one, standing parallel: The world of Disney.

 

After dinner is over and the boys retreat upstairs to their attic lair, Cornelia starts to think about what to do now. It’s like he peeked out from some vast underground and then vanished. He’s done this before, but never quite like this. “How on earth,” she says almost to herself, “do you get back in there?”

 

I feel she’s asking me. She has been the one lifting the burden each day, driving him to therapists and schools, rocking him to sleep as he thrashes at 3 a.m. I’m the one who tells stories, does voices, wears a propeller hat. Her look says, “Find a way.”

 

Soon I’m tiptoeing up the carpeted stairs. Owen’s sitting on his bed, flipping through a Disney book; he can’t read, of course, but he likes to look at the pictures. The mission is to reach around the banister into his closet and grab his puppet of Iago, the parrot from “Aladdin” and one of his favorite characters. He has been doing lots of Iago echolalia, easy to identify because the character is voiced by Gilbert Gottfried, who talks like a busted Cuisinart. Once Iago’s in hand, I gently pull the bedspread from the foot of Owen’s bed onto the floor. He doesn’t look up. It takes four minutes for Iago and me to make it safely under the bedspread.

 

Now crawl, snail-slow, along the side of the bed to its midpoint. Fine.

I freeze here for a minute, trying to figure out my opening line; four or five sentences dance about, auditioning.  Then, a thought: Be Iago. What would Iago say? I push the puppet up from the covers. “So, Owen, how ya doin’?” I say, doing my best Gilbert Gottfried. “I mean, how does it feel to be you?!” I can see him turn toward Iago. It’s as if he is bumping into an old friend. “I’m not happy. I don’t have friends. I can’t understand what people say.” I have not heard this voice, natural and easy, with the traditional rhythm of common speech, since he was 2. I’m talking to my son for the first time in five years. Or Iago is. Stay in character. “So, Owen, when did yoooou and I become such good friends?”

 

“When I started watching ‘Aladdin’ all the time. You made me laugh so much. You’re so funny.”

 

My mind is racing — find a snatch of dialogue, anything. One scene I’ve seen him watch and rewind is when Iago tells the villainous vizier Jafar how he should become sultan.

 

Back as Iago: “Funny? O.K., Owen, like when I say . . . um. . . . So, so, you marry the princess and you become the chump husband.” Owen makes a gravelly sound, like someone trying to clear his throat or find a lower tone: “I loooove the way your fowl little mind works.” It’s a Jafar line, in Jafar’s voice — a bit higher-pitched, of course, but all there, the faintly British accent, the sinister tone.

 

I’m an evil parrot talking to a Disney villain, and he’s talking back. Then, I hear a laugh, a joyful little laugh that I have not heard in many years.”

Through the medium of Disney movies, Suskind was finally able to communicate with his son.   The boy he lost came back to life.  How had these children’s stories penetrated Owen’s small, closed world? 

More generally, why do stories teach and change us in ways that didactic teaching cannot?  Why did Jesus teach and form his disciples through parables?

 
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Posted by on March 9, 2014 in Uncategorized

 

Bolstering Moral Resilience

People enter the profession of medicine for a variety of reasons.  Certainly self-interest often plays an important role in somebody choosing to be a doctor.  Prospective physicians are well aware that at the end of a long road of education and training, there is the virtual guarantee of a reliable, respectable, and sometimes lucrative job.  But it is also the case that many doctors-to-be are motivated by the desire to help their fellow human beings.  Entering medicine holds out the promise of becoming a healer, of engaging in work that really betters the lives of others.

It is a sad fact that medical students seem to lose a significant amount of this altruistic impulse as they progress through their medical training. Physician and essayist Danielle Ofri writes that

something in our medical training system serves to stamp out whatever empathy students bring with them on day one.  The research appears to conclude that it is the third year of traditional medical curriculum that does the most damage.  This is a dispiriting finding, as the third year of medical school is the one in which medical students take their first steps into actual patient care.  For most students, the third year of medical school is eagerly awaited.  After two long years sitting in classrooms, you get to actually do what it is that doctors do—be in hospitals, take care of patients.  One would think that these first steps into real patient care would bring forth all the idealism that drove students to medical school in the first place—idealism that is sorely tested in the first two years of memorizing reams of arcane facts.

But the reverse seems to occur.  After their seminal clinical experiences involving real contact with real patients, medical students emerge with their empathy battered.  Their ideals of medicine as a profession are pummeled by their initiation into the real world of clinical medicine.  And it is in this demoralized state that we send them into residency to accrue what are arguably the most influential and formative experiences of becoming practicing physicians.

Ofri goes on to consider why the clinical years of medical school tend to undermine students’ compassion and empathy.   The most frequently identified culprit is what is often termed the hidden curriculum.  Ofri writes that

the formal curriculum—what is taught in the lecture halls, what is embodied in the school’s mission statement, what is intoned by the deans and senior faculty who usher the students into the sacred world of medicine—can be trounced by the hidden or informal curriculum that the students are submerged in once they enter the clinical fray.

During the clinical years of medical school, students spend most of their time with interns and residents.  These are physicians who just finished medical school and are now receiving intensive training in whatever specialty they selected.  These interns and residents from whom students receive most of their training are usually expected to perform a large volume of clinical work in a brief period of time.  Thus, as Ofri writes,

these physicians-in-training typically develop a whatever-it-takes-to-get-it-done attitude” that “breeds an efficiency that often dispenses with niceties. . . The primacy of pragmatism laced with gallows humor and ever-present physical exhaustion submerge the idealistic medical students in a decidedly unromantic view of medicine.  The philosophical musings of Osler, Hippocrates, the deans, and the old-school attendings have little traction here.

The medical student observes that even the most thoughtful and humanistic intern operates under the brutal calculus that every minute spend on nonessentials simply prolongs the work.  Sure, it’s wonderful to have an in-depth conversation with a patient, to do a more thorough physical exam, to patiently explain the disease process to a family member, to read up on a rare disorder, to attend that lecture on communication skills, to visit a patient a third time in the day, to make those extra phone calls to unravel a patient’s medical history, to let a patient ramble on without interruption—but none of these will get the work done. . . Whatever the medical student has been taught, and even genuinely believes, about the ideals of medicine, the primacy of empathy, the value of the doctor-patient relationship—all of this is swamped once he or she steps into the wards.  Even the most idealistic student can start to view every new admission as an additional burden, every patient’s request as another obstacle to getting the work done, every moment of casual conversation as a moment less of sleep.  It’s no wonder that empathy gets trounced in the actual world of clinical medicine; everything that empathy requires seems to detract from daily survival.

As part of the task force designing the bioethics and humanities curriculum for the new Dell Medical School in Austin, one of my goals is to bolster medical students’ moral resilience.  I want to help physicians-in-training maintain a moral vision for their work even when a variety of forces threaten to undermine it.  In future blog posts, I will consider how medical educators can encourage students to operate with a moral vision in which caring for patients and their well-being is the ultimate, guiding value.

 
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Posted by on March 2, 2014 in Uncategorized

 
 
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