Vulnerable Populations Drawing Back Drawing Closer Johanna Shapiro

Vulnerable Populations: Drawing Back, Drawing Closer Johanna Shapiro, Ph. D. Professor, Department of Family Medicine Director, Program in Medical Humanities UC Irvine School of Medicine

Vulnerable Patients n n Different definitions of vulnerable patients Patients may be vulnerable medically (e. g. , immuno-compromised pts) They may be vulnerable in terms of decision-making competence (e. g. , children, elderly demented, mentally ill/disabled pts) They may also be vulnerable because of various social and cultural factors

Overview of thesis All people, including healthcare professionals, have different ways of responding to the suffering of others: n n n n n Drawing closer Drawing away: Turning the patient into an “other” Rejected object or scapegoat Within medicine, certain groups of patients are viewed as more permissible to pull back from or “other” These groups become vulnerable in the sense that: Viewed less empathetically Viewed as less than fully human

Equal and Opposite Impulses in Response to Suffering n n n The altruistic impulse n Drawing closer to the suffering other n Putting interests of other above self n Feeling empathy toward the other The impulse to detach and separate from the “contamination” of suffering n Literal contamination n Metaphoric contamination (vulnerability, loss of control) Without much difficulty, separation becomes frustration n n becomes anger Becomes pulling away from

What Triggers the Drawing Back Response? n n Evolutionary – self-preservation Cultural/philosophical components n Emphasis on control and mastery – n n Vanquish and overcome disease/disability – n n Don’t like situations where not in control Don’t like situations where not being effective Idealized self n n n Pure, clean, boundaried Immune to fragmentation and corruption I/Other split

I/Other Split n n n Human tendency to mark difference as more significant than similarity Infer something dangerous and threatening from difference Define ourselves not just in terms of self, but in terms of other Positive identity cannot exist without negative identity To recognize ourselves as pure, healthy, and good we need someone whom we can identify as defiled, sick, and bad

I/Other Split n n n The more the other can be confused with the self, the more urgent is the need for boundary delineation Once we locate fears of our own vulnerability and dissolution externally, onto the other, our anxiety is domesticated All identities that are threatening, and therefore loathsome, to the clean and pure self, become “other”

Scapegoating n n Individuals and groups pursue wholeness by rejecting frightening and impure elements of themselves and projecting them onto others Patient-victim is defined as the outsider – insiders are thus bound together Scapegoat must be symbolically banished, differentiated from the self Blaming patients for their illness

“Vulnerable” Populations Most Likely to be Othered n Patients with stigmatizing diseases n n n n n HIV/AIDS Cancer Lifestyle disease The elderly, especially demented Persons with disabilities Patients with addictions Patients with mental illness/mental disability/homeless Victims of intimate partner violence Patients from different cultural backgrounds Patients of different ses n n Poor Less educated

Counteracting the Impulse to Draw Back n n Identification and acknowledgment of own fear and vulnerability Seeking common ground with patient Imperfection n Vulnerability n Suffering Empathy: skills/attitudes for drawing closer n Climbing into the boat n Understanding the patient’s perspective n n n Respecting difference n Accepting understanding of another is always imperfect

“Othered” Patients At the Doctor’s - Robert Watson Everyone could tell they had given up, Abandoned amenities of attire, diet, soap; She lean, face mean with fear or pain; He obese, socks unmated, belches at the magazine In which he looks and does not turn a page. She would cry off and on. They are themselves, nothing else, too far gone To soothe our minds with any likeness To familiar bird, beast, or fish. An outrage: They strung a spell over the doctor’s office. These wretches made us invisible and well, Pick pocketed our each groomed ill. They were so cruelly themselves, foreign and other. Untended, their children bang and rain Up and down the corridor like a hurricane. They ruled the waiting room, this crude, poor pair And they had renounced all that to us is dear.

Poor Obese Patient The Promise – Veneta Masson, R. N. If you could just lose weight your blood pressure would go down your diabetes would clear up you could get off all those pills you take your joints wouldn’t ache you could climb the stairs run after the bus carry the groceries pick up the baby The swelling in your legs would go down you could reach all the way to your aching feet you could breathe again you could find clothes to fit get out of your slippers and into real shoes Who knows but what your old man would come back you’d get more respect from your children a decent job your son would kick drugs your daughter wouldn’t get pregnant again you’d live to see your last one grown Your neighbors wouldn’t talk about you the toilet would flush the roof wouldn’t leak there’s be food enough at the end of the month they wouldn’t cut off your check jack up the rent you’d hit the number go off for two weeks in Aruba Jesus would save the world from sin those who mourn would be comforted the poor would enter the Kingdom of God your hunger would be filled.

Noncompliant Diabetic Patient Walking the Dog – John Wright, M. D. She weighed Walking the dog Three hundred pounds. twice a day Fat and high sugars I thought were killing her might persuade, I thought. might motivate. So, I thought. So, I gave her a puppy with dark curly hair, nothing else had worked She was pleased with my prescription she laughed, she rocked from side to side. She lived for twelve years hugging that little black dog While her lean husband walked it faithfully, twice a day.

Patient with Disability Spastics – Vassar Miller They are not beautiful, young, and strong when it strikes, But wizened in wombs like everyone else, Like monkeys, Like fish, Like worms, Creepy-crawlies from yesterday’s rocks Tomorrow will step on. Hence presidents, and most parents, don’t have to worry. No one in Congress will die of it. No one else. Don’t worry, They just Hang on, Drooling, stupid from watching too much TV, Born-that-way senile, Rarely marry, expected to make it with Jesus, Never really make it at all, Don’t know how, Some can’t Feed themselves Fool with, well – Even some sappy saint said they Look young because pure.

Patient with Disability Protect Yourself from This – Karen Fizer Protect yourself from this, the sight of the lumpish woman in plate glass laboring to push herself along in her coat, in the sun. She looks to be a woman of a certain age, a nice woman, but forlorn, with too much pain in her face to be outdoors. You look away, then swiftly back, to see her struggle with the chair outside the heavy bank door, holding her packages upright in her lap with her teeth. She starts to mutter, how difficult things are. For an instant you allow yourself to feel her dread, her effort not to become another crazy crying on a Berkeley street. She is not what you feel yourself to be, but what you see you are, reflected in the world’s unyielding surfaces. You know that you can never leave her, now.

Drug-Addicted Patient Junkie on the Phone – Kirsten Emmott, M. D. You don’t have a headache. The GP you named doesn’t know you. The pharmacist recognizes your name. You even called me before. I won’t prescribe the drugs. Play the game elsewhere. Call up some other doctor. Set out your lies: “Doctor, here is my lie. I want you to join in my lying. Pretend I am sick. Give me what will make me sicker. Give me a stick with which to beat myself. Help me to die. ”

Drug-Addicted Patient Jamal – Rafael Campo, M. D. The patient is a three-year old black male, The full term product of a pregnancy That was, according to his grandmother, Unplanned and maybe complicated by Prenatal alcohol exposure. Did OK, developmentally delayed But normal weights and heights, until last week When he ingested what’s turned out to be Cocaine, according to the lab results; His grandmother had said she’d seen him with Some baby powder on his face and hands Before he started seizing and they brought Him in. The vital signs have stabilized. The nurse is getting D. S. S. involved. The mom? She left it on the kitchen table. That’s her – the one who sings to him all night.

Cross-Cultural Patient Maria – Rafael Campo, M. D. This G 2, P 1 gives us a confusing History. It sounds like she’s been pregnant Approximately thirty weeks, although She can’t recall her last LMP> No pain, But bleeding for about two days. Of course She hasn’t had prenatal care, and God Only knows where the father is. She works Two jobs that keep her on her feet all day. She’s been in the United States six months, And doesn’t speak a word of English. Bet You she’s illegal. Cervical exam Is unremarkable, the os is closed. I think we need an ultrasound to tell Us more. Besides a look at the placenta, We need some confirmation of her dates. Her uterus can tell us more than she can.

Cross-Cultural Patient What is Lost – Peter Pereira M. D. When she came across the border She had no shoes only one black Cambodian skirt, a thin blouse, the long Scarf they used for everything, sleeping, Bathing, carrying food, wrapping The bodies of the dead. She no longer wants to say What happened to her husband brothers, Afraid if words bring them back, Along will come the soldiers. What do I have, she asks, To keep the nightmares away? Next to her guttural vowels And clipped consonants, my English Strikes a tin note. The interpreter Translates my advice, and I wonder Which sound was nerve, which Was heart, which grief. I give her another pill to try. Perhaps with this one She will sleep well Tonight. A sleep untroubled By dreams, by memory. She listens politely, smiles A thank you: her only English. Yet as I watch her leave I know her cure comes Tuesday afternoons When she joins the circle Of other Khmer women to sew. Punctuating the fabric With yellow thread, binding her remnants Into a piece that will hold.

Intimate Partner Violence S. W. - Rafael Campo, M. D. Extending from her left ear down her jaw, The lac was seven centimeters long. She told me that she slipped and struck her face Against the kitchen floor. The floor was wet Because she had been mopping it. I guessed She’d had to wait for many hours since The clock read nearly midnight; who mops floors So late? Her little girl kept screaming in Her husband’s thick, impatient arms: he knocked Three times, each time to ask when we’d be done. I infiltrated first with lidocaine. She barely winced, and didn’t start to cry Until the sixteenth stitch went in and we Were almost through. I thought my handiwork Was admirable. I yawned, then offered her Instructions on the care of wounds. She left.

Intimate Partner Violence You Think You Know Me -Johanna Shapiro You but think you know me you don’t think you know how to help me you don’t. Does he hit you? You wonder I don’t want to sound like our former president but I have to ask What do you mean by ‘hit’? Because it’s true he can be rough but it’s not like he’s beaten me to a pulp. You have to leave, you insist as if I’m the problem, a trespasser in my own house. Where am I supposed to go? To a shelter, like some homeless person? Plan an escape route, you urge which is ridiculous Whoever heard of anybody trying to escape from the place she’s lived her entire adult life the place her children were born? It’s not like I’m a prisoner, you know. It’s not your fault, you say But how do you know? Have you ever seen me when I’m mean-mad, when I provoke him beyond reason, beyond control? You’ve never seen me like that and you better hope you never will.

Intimate Partner Violence He has no right, you argue and that’s true It’s not like it’s in the Constitution or anything But then he says abortion isn’t really in the Constitution either and women still do it whenever they want for their own selfish reasons So who’s to say really what’s a right and what’s not? And when I try to explain how that man comes on his bended knees to me and is sincerely repentant and you say It’s just part of the pattern Then I know you’ll never understand me because when he holds me and kisses me and tells me he is sorry truly sorry Does he hurt the children? you worry and I have to laugh As a matter of fact, he adores those kids He’d do just about anything for them as long as they behave themselves And he’s a very good provider he really is. Then at that moment I am the most cherished woman in the world and I am loved as I never have been before and never will be again in all my miserable, pathetic life.

Summary n n n Sometimes you will feel the impulse to pull away from your patient Sometimes you will see your colleagues/other health professionals withdrawing, detaching, blaming, or mocking patients Think about your reflexive response Think about getting on the same side as your patient Think about drawing closer

Personal Writing as a Tool for Professional Development Johanna Shapiro, Ph. D.

Personal Writing as a Tool for Professional Development n Research with patient populations shows writing is associated with: n n n Reduced physical symptoms Improved psychological health Research with normal populations shows writing is associated with: n n n Better immune function Decreased physician visits Improved wellbeing

Personal Writing as a Tool for Professional Development n n Counteracts helplessness, promotes active reflection Reduces feelings of frustration and passivity Creates understanding and coherence Helps us discover alternative or complementary meanings and points of view n n n Stimulates curiosity about and greater appreciation for ourselves and others Increases empathy Encourages playful, imaginative, creative thinking about our lives Can develop innovative strategies for coping with difficult situations Can result in resolution and moving on

When I’m having trouble with a patient, when I feel I’m not doing the right thing, I write a story from the patient’s point of view - Rita Charon, M. D. , Ph. D.

Point of View Writing: Definition n n Adopts the patient’s (family member’s) point of view Describes key life events and/or provider-patient encounters.

Point of View Writing: Technique n n Select a patient on basis of perceived difficulty or highly charged affect Commit to 10 minutes of writing time Write in the first person voice (“I”), relating the patient’s perspective, thoughts, feelings about a recent provider-patient encounter, illness episode, or other major life event Use information actually known about the patient from past encounters, but also try to imagine aspects of the patient’s life that are unknown

Mindful Writing: Definition n Combines a centered, calm attitude with the intention of compassion and loving-kindness toward patient or other

Mindful Writing: Technique n n n Centering through relaxation, breathing, prayer, or meditation Select patient who has “stayed with” you Commit to 10 minutes of writing time Write from perspective of “wise counselor” Use second person (“you”) to yourself

Reflective Writing: Write It Thrice n n Definition: Writing three ever-deepening narratives of the same event

Reflective Writing: Technique n 1 st Writing n n 2 nd Writing n n n Describe events in as much detail as possible Stand back and begin to reflect What was going on? What were feelings of self and others What might be a meaning of the event described? 3 rd Writing n n Try to deepen possible meaning and significance of event Self-questioning Views and perspectives of others Relationship of event to past events and patterns

Poetry! n n Reflect on patient, family member, colleague, memorable encounter Use rhyme scheme, meter, or free verse

Additional Techniques n Letter-writing n n Write a first-person email to a patient, addressing him or her as “you” (second person voice) Critical incident writing Write a descriptive essay in the first person about a difficult or memorable patient encounter n

QUESTIONS? ? ?