Lost in Translation #3/4


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Third in a series of presentations focused on interprofessional research related to medical communication. Looks at barriers and catalysts to successful medical communication of emotional news. Particular attention is paid to the emotional state of the physician.

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  • Obstacles and catalysis to successful communicationElements to be negotiated within the shared spaceThe complex nature of “hope”
  • Behavioral economics. MINDSPACE mnemonic: Messenger. Incentives. Norms. Defaults. Salience. Priming. Affect. Commitments. Ego.Image: http://www.scribd.com/doc/42975012/2/Executive-summary
  • Physician statements on the y and surrogate interpretation on the x. 50% chanceRange suddenly 50 to ~70%Median 50% but mean 63%Definitely notRange 0-50%Median 10%Mean 28%No difference between qualitative & quantitative formulationsUsing your scary words will only take you so far.
  • NEJM. …in the world of palliative chemotherapy.“After talking with your providers about chemotherapy, how likely did you think it was that chemotherapy would…cure your cancer.”“…disclosure alone may not lead to sustained understanding among patients.”“In other words, a focus on chemotherapy was the instrument that facilitated prognostic misunderstanding. This phenomenon may help explain our finding that patients with colorectal cancer, a more chemotherapy- responsive disease than lung cancer, were more likely to report that chemotherapy could be curative.”
  • Adapted from a white paper developed from the British Institute for Government and Cabinet OfficeAbout how we target our efforts  changing minds versus changing context of decisionsWho is speaking with usWhat other people are doingAnd what we’ve always done.How we think and the short-cuts that we take in our thinkingAbout things that seem new or important.
  • How do we feelAnd how is the environment influencing those feelings and thoughts;Seeking out things that make us look good to others and feel good about ourselves.
  • Impacted also by the style of communication between pts and families: “1) avoidance of psychological distress,2) desire for mutual protection,and 3) a belief in positive thinking.” (Waldrop et al., 2012.) and by timing, “84% wanted to discuss treatment goals and options when first diagnosed. 59%wanted to discuss survival, but only a third wanted to discuss dying and palliative care at the diagnosis.” (Parker et al., 2007.)**Questions?**
  • Norton’s “Reconciling Decisions Near the End of Life” theory: “From the providers' perspective, the big picture was a gestalt of the patient's condition constructed from information about the diagnosis,test results,prognosis,general assessment findings (including physical, emotional, and spiritual factors),treatment options,treatment efficacy,treatment burdens,and patient goals. This information, filtered through providers' knowledge,insights,and experience…” (Norton & Bower, 2001.)sense of ambivalence and level of comfort. **Questions?**
  • Meaningful communication cannot occur without leaving both avoidance and ambiguity outside of the shared space. Providers do and don’t want do pronounce a death sentence and patients to and don’t want to hear one. The outcome of this is that it becomes easy to glance off those feeling of ambiguity and never explicitly arrive at the core truths. This process of leaving the bubble of ambiguity intact is the most comfortable route for patient and provider Weeks article (Weeks et al., 2012.) (The et al., 2000.)
  • How emotionally numb do you feel about your illness?Adapted from Prolonged Grief Disorder ScaleAssociated withDisbeliefBitternessYearningPTSD related to initial diagnosisThe more emotionally numbThe more likely that EOL discussions would lead to more aggressive care(9-fold increased odds with each increase in the score)(EOL discussions would be expected to be of questionable benefit to a small subset (9.3%) of patients who were either quite a bit or overwhelmingly emotionally numb. Indeed, EOL discussions for a small minority (2.4%) of patients who were overwhelmingly numb may actually heighten rather than protect patients from the risk of receipt of aggressive, expensive, burdensome EOL care.)
  • Adapted from Joan Halifax’s work as a Distinguished Visiting Scholar in the Kluge Center of the Library of Congress on Compassion’s Edge States.EventEmpathy = affective attunement (no separation between self and other)Perspective taking = cognitive attunementMemory = personal experienceArousal levelEmpathic overloadThis is the key point, how the provider reacts at this point can determine the entire course of the patient’s illness experience.EmotionPersonal distressBehaviorSelf-centeredSelfish prosocial behavior (“doing something” to help self)Moral outrageAvoidanceNumbing/freeze responseThis response is neurologically hard-wired; let’s look at it in another way.--EmpathyAffective stateStems from the perception of another’s emotional state/conditionCongruent with that emotionSympathyAffective stateStems from the perception of another’s emotional state/conditionNot identical to that emotionColored by feelings of sorrow/concernSympathy + selfless prosocial behavior = compassion
  • “The Russian doll model of multilayered empathy.The doll's inner core consists of the perception-action mechanism (PAM) (‘mirror-neurons’)that underlies state-matching and emotional contagion (15). Hard-wired socioaffective systemThe doll's outer layers include sympathetic concern (‘empathy  sympathy’) and targeted helping. The complexity of empathy grows with increasing perspective-taking capacities…”…need the training & the tools to be able to successfully move toward effective targeted helping…
  • EventEmpathy = affective attunement (no separation between self and other)Perspective taking = cognitive attunementMemory = personal experienceArousal levelEmotional regulationEmotionSympathyBehaviorOther-centered = selfless prosocial behavior (“doing something” to help other person)EmpathyAffective stateStems from the perception of another’s emotional state/conditionCongruent with that emotionSympathyAffective stateStems from the perception of another’s emotional state/conditionNot identical to that emotionColored by feelings of sorrow/concernSympathy + selfless prosocial behavior = compassionPhysicians are more likely to constructively address patient’s emotional states if they incorporate reflective self-awareness exercises into their practice (Halpern & Arnold, 2008)
  • The provider’s partA willingness to accept the patient’s anxiety around difficult topics and the ability to sit with that discomfort. To accept that she has caused that distress and to reframe it for herself and for the patient. Image credit: http://www.securitycatalyst.com/wp-content/uploads/2011/10/curated_catalyst_540.jpg
  • Compassion isAn emergent processArising out of the interaction of multiple processesSomaticAffectiveCognitiveAttentionalEmbodiedTherefore, it cannot be trained in directly, only primed.
  • The process of building trustTakes time, often a long timeBegins with the building of rapportDoes not take a long timeIs based in mutual understanding of and respect for each other’s world-viewsImage credit: http://businessmarketingsuccess.com/wp-content/uploads/June-19th-Trust-thumb.jpg
  • Successful communication requires:An understanding of the patient’s world-viewAn understanding of the provider’s world-viewA willingness to negotiateAs well as an understanding that…The most important thing to remember is that both parties share the ability, the desire, the natural inclination to prognosticate though they come to the process with different skill sets.Coming to use the same language regarding the patient’s status is a key process.The majority of surrogates in one study (51%) relied solely on their own formulation of prognosis that included…physical appearance (64%),previous fitness (37%),surrogate’s personal optimism (36%),pt’s previous illness experience (28%),intrinsic qualities (27%),faith in God (20%),intuition (19%),family’s bedside presence (13%),rallying of community (5%),miracles (4%)and reciprocity/karma (2%).
  • Cognitive interventionstarget clearly conveying prognostic informationvisual aidschecking behaviorsteach-backs, andmultiple conversations. Emotional and psychological interventions foster rapport (or trust) between clinicians and family, andprovide emotional support to family membersDivergent viewsSeek to speak common languageSpiritual or religious basisphysicians may avoid using more strident attempts at scientific explanations to convince surrogates of the prognosis instead enlist the help of a chaplain or a representative of the surrogate’s religion to help mediate the conflict. Data interpretationSeeking the input of multiple senior clinicians to help patient triangulate. Focus patient on and defineprognostic significance of the physical data(Lee Char et al., 2010.)(Zieret al., 2009.)
  • Lost in Translation #3/4

    1. 1. Kyle P. Edmonds, MD Institute for Palliative Medicine San Diego Hospice
    2. 2. Elements to Negotiate Patient Perspective Provider Perspective
    3. 3. Zier et al., 2012.
    4. 4. Weeks et al., 2012.
    5. 5. Messenger • Who communicates Incentives • Mental shortcuts (avoiding loss) Norms • What others do Defaults • We “go with the flow” Salience • What is novel and relevant Dolan et al., 2009.
    6. 6. Priming Affect Commitments Ego • Sub-conscious cues • Emotional associations • Public promises / reciprocated acts • Act in ways that make us feel better Dolan et al., 2009.
    7. 7. Data Chosen Role Trust in Provider Cues Patient Framing Ambivalence Coping Style Beliefs History
    8. 8. Experiences Assumptions Education Population Data Provider Professional Norms Chosen Role Patient Data Ambivalence Beliefs
    9. 9. Patient Defenses Avoidance Reality Provider Discomfort Ambiguity
    10. 10. Maciejewski & Prigerson, 2013.
    11. 11. Event Arousal Emotion Behavior • Empathy • Perspective • Memory • Overload • Ambivalence • Personal distress • Selfish Prosocial • Avoidance • Freeze Adapted from: Halifax, 2011.
    12. 12. de Waal, 2012.
    13. 13. Event Arousal Emotion Behavior • Empathy • Perspective • Memory • Emotional regulation • Sympathy • Selfless Prosocial • Othercentered Adapted from: Halifax, 2011.
    14. 14. • Mutual understanding • Willingness to engage • Reframing anxiety
    15. 15. Halifax, 2012.
    16. 16. • Rapport • vs. Trust
    17. 17. Location of Hope Power of Optimism Meaning Making Control Needs
    18. 18. Actions Experiences Defining Hope Ambivalence Framing Assumptions Tailoring Outcome Affective Cues Avoidance Lack of Trust Confidence Interval
    19. 19. Kyle P. Edmonds, MD kyle.p.edmonds@gmail.com kylepedmonds.com
    20. 20. • • • • • • • • • • • • • • • • • • • • • • • • • Barnes S et al. (2012). Enhancing patient-professional communication about end-of-life issues in life-limiting conditions: A critical review of the literature. J Pain Sympt Mgmt. 44(6): 866-879. Botti S & SS Iyengar (2004). The psychological pleasure and pain of choosing: when people prefer choosing at the cost of subsequent satisfaction. J Personal Soc Psychol 87(3):312–26. Boyd EA, Lo B, Evans LR, Malvar G, Apatira L, Luce JM & DB White (2010). “It’s not just what the doctor tells me:” Factors that influence surrogate decision -makers’ perceptions of prognosis. Crit Care Med. 38: 1270-1275. Braddock CH, Edwards KA, Hasenberg NM, Laidley TL & W Levinson (1999). Informed decision making in outpatient practice: Time to get back to the basics. JAMA. 282(24): 2313-2320. Brett AS & P Jersild (2003). “Inappropriate” treatment near the end of life: Conflict between religious convictions and clinical judgement. Arch Intern Med. 163: 16451650. Brown RF, Butow PN, Butt DG, Moore AR & MHN Tattersall (2004). Developing ethical strategies to assist oncologists in seeking informed consen t to cancer clinical trials. Soc Sci & Med. 58: 379-390. Charles C, Redko C, Whelan T, Gafni A, Reyno L (1998). Doing nothing is no choice: lay constructions of treatment decision making among women with early stage breast cancer. Soc Health Illness. 20(1):71–95. Chochinov HM (2011). Death, time and the theory of relativity. J Pain Sympt Mgmt. In Press. Accessed: July 5, 2011. Chochinov HM, Hack T, Hassard T, Kristjanson LJ, McClement S & M Harlos (2005). Understanding the will to live in patients nearing death. Psychosomatics. 46: 7-10. Chochinov HM, Hassard T, McClement S, Hack T, Kristjanson LJ, Harlos M, Sinclair S & A Murray (2009). The landscape of distress in the terminally ill. J Pain Sympt Mgmt. 38(5): 641-649. Chochinov HM, Kristjanson LJ, Hack TF, Hassard T, McClement S & M Harlos (2006). Personality, neuroticism and coping towards the end of life. J Pain Sympt Mgmt. 32(4): 332-341. Christakis NA (1999). Death foretold: Prophecy and prognosis in medical care. The University of Chicago Press. Chicago, IL. Clayton JM, Butow PN & MHN Tattersall (2005). When and how to initiate discussion about prognosis and end -of-life issues with terminally ill patients. J Pain Sympt Mgmt. 30(2): 132-144. Clover A, Browne J, McErlain P & B Vandenberg (2004). Patient approaches to clinical conversations in the palliative care setting. J Adv Nursing. 48(4): 333-341. Cykert S et al. (2010). Factors associated with decision to undergo surgery among patients with newly diagnosed early -stage lung cancer. JAMA. 303(23):2368-2376. deHaes H & N Koedoot (2003). Patient centered decision making in palliative care treatment: A world of paradoxes. Pt Ed & Couns. 50: 43-49. de Waal, FBM (2012). The Antiquity of empathy. Science. 336: 874-876. Delvecchio Good MJ, Good BJ, Schaffer C & SE Lind (1990). American oncology and the discourse of hope. Culture, Med & Psych. 14: 59-79. Dolan, Paul, Michael Hallsworth, David Halpern, Dominic King, and Ivo Vlaev. "MINDSPACE: Influencing Behaviour through Public Policy." Scribd. Institute for Government & Cabinet Office, 2 Mar. 2009. Web. 16 Jan. 2013. Eliott J & I Oliver (2002). The discursive properties of “hope”: A qualitative analysis of cancer patients’s speech. Qual Health Res. 12: 173-193. Eliott JA & IN Oliver (2006). Hope and hoping in the talk of dying cancer patients. Soc Sci & Med. 64: 138-149. Gettellari M, Vought KJ, Butow PN & MNH Tattersall (2002). When the treatment goal is not cure: Patients equipped to make informed decisions. J Clin Onc. 20(2): 503-513. Gomes B & IJ Higginson (2006). Factors influencing death at home in terminally ill patients with cancer: Systematic review. BMJ. Doi: 10.1136/bmj.38740.614954.55. Gramling R et al. (2012). Direct observation of prognosis communication in palliative care: A descriptive study. J Pain Sympt Mgmt. Released online prior to publishing. Accessed 12/2012. Gries CJ, Engelberg RA, Kross EK, Zatzick D, Nielsen EL, Downey L & JR Curtis (2010). Predictors of symptoms of posttraumatic stress and depression in family members after patient death in the ICU. Chest. 137(2): 280-287.
    21. 21. • • • • • • • • • • • • • • • • • • • • • • • • • Groopman J (2007). How Doctors Think. Houghton Mifflin Company. New York, NY. Halifax J (2012). A heuristic model of enactive compassion. Curr Opin Supp & Pall Care. 6: 1-8. Hancock K et al. (2007). Discrepant perceptions about end-of-life communication: A systematic review. J Pain Sympt Mgmt. 34(2): 190-200. Harding R et al (2008). Meeting the communication and information needs of chronic heart failure patients. J Pain Symp Mgmt. 36(2): 149-156. Heyland, D. K., Chris Frank, Dianne Groll, Deb Pinchora, Peter Dodek, Graeme Rocker, and Amiram Gafni. "Understanding Cardiopulmonary Resuscitation Decision Making: Perspectives of Seriously Ill Hospitalized Patients and Family Members." Chest 130.2 (2006): 419-28. Web. 10 Jan. 2011. Inside Compassion: Edge States, Contemplative Interventions, Neuroscience . Perf. Roshi Joan Halifax and Dr. George Chrousos. Library of Congress, 2011. Slide program. Found online 1/2013. Jacobson J, deLima Thomas J & VA Jackson (2013). Misunderstandings about prognosis: An approach for palliative care consultants when the patient does not seem to understand what was said. Jour Pall Med. 16(1): 91-95. Johnson S (2007). Hope in terminal illness: an evolutionary concept analysis. Int J Palliat Nurs. 13: 451–459. Johnson SK, Bautista CA, Hong SY, Weissfeld & DB White. An empirical study of surrogates’ preferred level of control over value -laden life support decisions in intensive care units. Am J Respir Crit Care Med. 183: 915-921. Kass-Bartelmes BL, Hughes R, Rutherford MK. Advance care planning: preferences for care at the end of life. Rockville (MD): Agency for Healt hcare Research and Quality; 2003. Research in Action Issue #12. AHRQ Pub No. 03-0018. Kelley, AS, Morrison RS, Wnger NS, Ettner SL & CA Sarkasian (2010). Determinants of treatment intensity for patients with serious illness: A new conceptual framework. J Pall Med. 13(7): 807-813. Kodish E & SG post (1995). Oncology and hope. J Clin Onc. 13(7): 1817-1822. Kuehlmeyer K, Borasio GD & RJ Jox (2012). How family caregivers’ medical and moral assumptions influence decision making for patients in the vegetative state: a qualitative interview study. J Med Ethics. 38: 332-337. Lee Char SJ, Evans LR, Malvar GL & DB White (2010). A randomized trial of two methods to disclose prognosis to surrogate decision makers in intensive care units. Am J Respir Crit Care Med. 182: 905-909. Lo B et al. (2002). Discussing religious and spiritual issues at the end of life. JAMA. 287: 749-754. Maciejewski PK & HG Prigerson (2013). Emotional numbness modifies the effect of end-of-life (EOL) discussions on EOL care. Jour Pain & Sympt Mgmt. ePub ahead of print. Accessed 1/2013. McClement SE & HM Chochinov (2008). Hope in advanced cancer patients. Eur J Cancer. 44: 1169-1174. Miller WR & S Rollnick (2002). Motivational interviewing: Preparing people for change. The Guilford Press. New York, NY. Morse, JM & B Doberneck (1995). Delineating the concept of hope. Image: Journal of Nursing Scholarship. 27: 277-285. Norton SA & BJ Bowers (2001). Working toward consensus: Providers’ strategies to shift patients from curative to palliative t reatment choices. Research in Nursing & Health. 24: 258-269. Ok H, Marks R, Allegrante J (2008). Perceptions of health care provider communication activity among American cancer survivors and adults without cance r histories: an analysis of the 2003 Health Information Trends Survey (HINTS). J Health Commun. 13: 637e653. Parker SM et al. (2007). A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: Patient/caregiver preferences for the content, style and timing of information. J Pain Sympt Mgmt. 34(1): 81-93. Poses RM, Bekes MC, Copare FJ & WE Scott (1990). What difference does two days make? The inertia of physician’s sequential prognostic judgements for critically ill patients. Med Decis Making. 10: 6-14. Quill TE, Arnold R & AL Back (2009). Discussing treatment preferences with patients who want ‘everything.’ Ann Intern Med. 151: 345-349. Reyna VF (2008). Theories of medical decision making and health: An evidence -based approach. Med Decis Making. 28(6): 829-833.
    22. 22. • • • • • • • • • • • • • • • • • • • Robinson T et al. (2008). Patient-oncologist communication in advanced cancer: predictors of patient perception of prognosis. Support Care Cancer. 16:1049-1057. Slomka J (1002). The negotiation of death: Clinical decision making at the end of life. Soc Sci Med. 35(3): 251-259. Seymore JE (2000). Begotiating natural death in intensive care. Soc Sci Med. 51: 1241-1252. Shalowitz DI, Garrett-Mayer E & D Wendler (2006). The accuracy of surrogate decision makers: A systematic review. Arch Intern Med. 166: 493-497. Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L & Tulsky JA (2000). Factors considered important at the end of life by patients, family, physicians and other providers. JAMA. 284(19): 2476-2482. Suimasy DP, Astrow AB, He MK, Seils DM, Meropol NJ, Micco E & KP Weinfurt (2010). The culture of faith and hope: Patients’ justifications for their high estimations of expected therapeutic benefit when enrolling in early phase oncology trials. Cancer. 116: 3702-3711. Tariman JD, Berry DL, Cochrane B, Doorenbos A & K Schepp (2009). Preferred and actual participation roles during health care decision making in persons with cancer: a systematic review. Annals of Oncology. 21: 1145-1151. Temel JS et al. (2011). Longitudinal perceptions of prognosis and goals of therapy in patients with metastatic non -small-cell lung cancer: results of a randomized study of early palliative care. J Clin Oncol. 29: 2319-2326. The A, Hek T, Koeter G & G van der Waal (2000). Collusion in doctor-patient communication about imminent death: an ethnographic study. BMJ. 321: 1376-1381. Thompson GN, Chochinov HM, Wilson KG, McPherson CJ, Chary S, O’Shea FM, Kuhl DR, Fainsinger RL, Gagnon PR & KA Macmillan (2009). Prognostic acceptance and the well-being of patients receiving palliative care for cancer. J Clin Onc. 27(34): 5757-562. Timmermans S (1998). Resuscitation technology in the emergency department: Towards a dignified death. Soc Health & Illness. 20(2): 144-167. Wagner GJ, Riopelle D, Steckart J, Lorenz KA & KF Rosenfeld (2010). Provider communication and patient understanding of life-limiting illness and their relationship to patient communication of treatment preferences. J Pain Sympt Mgmt. 39(3): 527-534. Waldrop DP et al. (2012). The nature and timing of family-provider communication in late-stage cancer: A qualitative study of caregivers’ experiences. J Pain Symp Mgmt. 43(2): 182-194. Weeks JC et al. (1998). Relationship Between Cancer Patients' Predictions of Prognosis and Their Treatment Preferences. JAMA. 279(21): 1709-1714. Weeks et al. (2012). Patients’ expectations about effects of chemotherapy for advanced cancer. NEJM. 367: 1616-1625. White DB, Evans LR, Bautista CA, Luce JM & B Lo (2009). Are physicians’ recommendations to limit life support beneficial or burdensome? Bringing empirical data to the debate. Am J Respir Crit Care Med. 180: 320-325 White DB, Malvar G, Karr J, Lo B & JR Curtis (2010). Expanding the paradigm of the physician’s role in surrogate decision -making: An empirically derived framework. Crit Care Med. 38(3): 743-750. Zier LS et al. (2009). Surrogate decision maker’s responses to physicians’ predictions of medical futility. Chest. 136: 110-117. Zier LS, Sottile PD, Hong SY, Weissfeld LA & DB White. Surrogate decision makers’ interpretation of prognostic information: A mixed -methods study. Arch Intern Med. 156: 360-366.