Lost in Translation #1/4


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First in a series of presentations focused on interprofessional research related to medical communication. Unsuccessful medical communication of emotional information such as prognosis impacts patient outcomes. This presentation reviews the research to that end.

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  • “Cognitive interventions should target clearly conveying prognostic information (e.g., visual aids, checking behaviors, teach-backs, and multiple conversations). Emotional and psychological interventions should foster trust between clinicians and family, and provide emotional support to family members for coming to terms with the news of a poor prognosis.” (Lee Char et al., 2010.)“…by understanding that a religious objection is at the heart of a conflict, physicians may avoid using more strident attempts at scientific explanations to convince surrogates of the prognosis and instead enlist the help of a chaplain or a representative of the surrogate’s religion to help mediate the conflict. Seeking the input of multiple senior clinicians may help to mitigate conflict with surrogates who have nonreligious concerns about the accuracy of prognostic estimates. A careful explanation of the prognostic significance (or lack thereof) of the physical appearance of the patient may help…” (Zieret al., 2009.)“Hope to enjoy the richness and color of daily experience, hope to control pain, hope to be secure in the physician-patient relationship are the minimum the physician can offer. Hope to affect the quality of life, perhaps to influence the magnitude of side effects, to give treatment options their best chance are the most that might be offered.” (Del Vecchio Good et al., 1990.)
  • Image: http://www.scribd.com/doc/42975012/2/Executive-summary
  • Rosow’s triad at the bottom.PatientFamilyProviderThroughout this series, I will purposely conflate the worldviews of patients, surrogates & loved onesThey are similarTo do otherwise would complicate the picture
  • At the point of greatest patient-physician departure,there is the highest proportion of patients choosing life-extending Rx (61%, 8.5x greater odds). Alternatively stated: the more pessimistic MD estimates of survival, the more predictive a patient’s >90% estimation became of life-extending Rx. “Patients who preferred life-prolonging therapy were 1.6 times more likely to experience unfavorable outcomesreadmission to the hospital,and attempted resuscitation or death while receiving ventilatory assistance.” in a logistic regression model that controlled for age, race, sex, education, income, insurance status, site and stage of disease, functional status, overall quality of life, and physician-prognostic estimates,no statistically significant difference in 6-month survival between those who favored life-extending therapy and those who did not
  • Multiple factors work to determine location of patient deathNote that, as we know, patient’s in general prefer to die at homeThis requires solid prognostic knowledgeLead time for practical planning
  • Obviously most easily applied to the oncologic patient…Remission represents the point of highest optimism.Knowledge of prognosis naturally accrue over time? (Physical changes, Contact with other patients.)“In the cascade effect, one clinical decision inevitably and necessarily leads to a series of other decisions, which in turn leads to others based on the preceding decisions.” (Slomka 1992.)The illness journey becomes parceled into smaller segments with defined, positive end-points.
  • Predictive of higher information needs:YoungerMore educationBelief that time is limited (however those who feel they are near death have lower information requirement)Strong faith“’Knowledge about the expected course of the illness’ was preferred more frequently for cancer patients than for noncancer patients (45.1% vs 35.8%...” (Heyland et al. 2006)However, as we will see later, the number of facts provided by the physician to the patientDoes not correlate with later recall of facts by the patient.
  • Often decisions will not be made alone but rather in concert with the family. It is not imperative that the family agree with the patient’s decision, we must ensure that the patient’s decision will be honored and this is easier done if the family is on board before deterioration. Helen Prigerson (Socialization to Dying): the geriatric patient demonstrates an overall preference for the goals of palliative care; the care that is provided, however, is predicted by the preferences of the family and the provider.
  • Predictive of higher surrogate needs for control.YoungerMaleNon-Catholic ReligiousLower Trust of Provider(s)Lower Perceived Quality of CommunicationStudies indicate that it is extremely rare for providers to explicitly ask patients how they would like to make decisionsImage credit: http://assets.lifehack.org/wp-content/files/2008/03/decision.jpg?ecd364
  • When asked what their preference would be should the patient be incapacitated and a decision be made…It is not this simple, however,…(slide)
  • Amount of control afforded to providers differs based upon how moral the decision seems to patientsDemonstrates that therapeutic paternalism has a limit with regard to what are considered highly moral choices.Also indicates a need for providers to frame options in a proper light (medical vs. moral) limit choices proactively to those that are medically reasonable. “Life-sustaining/supporting” vs. “death-prolonging”I.E. when the long-term family caregivers of patients are asked about…“The term ‘life-sustaining treatment measures’ was often interpreted differently than how it would be defined medically. ANH or administration of antibiotics was not seen as a medical but ‘normal’ or ‘basic’ treatment by the family caregivers in this study.” (Kuehlmeyeret al., 2012.)
  • The inverse of many things we will refer to, below. Highlight hopelessness as a medical construct.
  • Poor communicationCaregivers don’t have the time to make emotional/practical preparations for death, can’t make fully-informed HC decisions and lose the chance to interact supportively with the pt increased grief and risk of mood d/o during bereavement.Also: inadequate pain mgmt, heightened anxiety, depression,reduced quality of life, hopelessness. (McClement & Chochinov 2008.)Image credit: http://us.123rf.com/400wm/400/400/yuliufu/yuliufu1204/yuliufu120400006/13182835-revolving-door-in-shanghai-of-china.jpg
  • Overall, there is agreement between physicians and surrogates once past the point of mutual ambivalence. However…32% elected to continue curative therapy with Px estimate <1% and 18% elected to continue to curative therapy with Px estimate 0%.
  • ProviderWith a willingness to initiate conversationsComes off as an expertConveys that she will not abandon the patientAssure them that pain will be controlledAnswers all questionsUses humorSupports dignityCompassionateResponsiveDedicated90% of patients/surrogates want to hear the provider’s opinion(Waldrop et ai., 2012.) (Johnson et al. 2011.)
  • Would you want CPR?Meaning and relevance.
  • Differing opinionsbtwn HC providers and patients…
  • …in the world of palliative chemotherapy.NEJM. “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.”
  • Physician statements on the y and surrogate interpretation on the x. “The fact that surrogates were able to accurately interpret numerical statements expressing a high probability of a good outcome, but not those expressing a high risk for death, suggests that simple misunderstandings of numerical risk information are unlikely to explain the discordance.”Using your scary words will only take you so far.
  • 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.)
  • 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.
  • JAMA: Cross-sectional, stratified, random national survey done March-Aug 1999 of seriously ill pts, recently bereaved family, physicians and other HC providers. Likert scale of 44 attributes.Attributes ranked by more than 70% of patients but not physicians.“When forced to choose between attributes (Table 5), patients ranked pain control higher than mental awareness; however, the mean rank difference was only 1.51. In contrast, the average difference between the same items among physicians was 3.76, suggesting physicians may be more willing than patients to sacrifice lucidity for analgesia.”Image credit: http://www.islandcrisis.net/wp-content/uploads/2011/05/difference.jpg
  • 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 #1/4

    1. 1. Kyle P. Edmonds, MD Institute for Palliative Medicine San Diego Hospice
    2. 2. Actions Experiences Outcome Confidence Interval
    3. 3. Kelley et al., 2010.
    4. 4. Weeks et al., 1998.
    5. 5. Gomes & Higginson, 2006.
    6. 6. CRISIS Dx Focus on Curative Therapy Remission Peace of Mind Reoccurrence CRISIS Further Curative Therapy CRISIS No Further Curative Options
    7. 7. High Level of Requested Prognostic Info United States 93% United Kingdom 85% Japan 80% Greece 50% Italy 32% Spain 12% Parker et al., 2007.
    8. 8. Patient Provider Family
    9. 9. • Differs patient-to-patient • Provider assumptions Johnson et al., 2011.
    10. 10. Heyland et al, 2006
    11. 11. Johnson et al., 2011.
    12. 12. Sparse Conflicted Contradictory Avoidant Too rushed Hopeless Brink of Death Waldrop et al., 2012.
    13. 13. • Poor treatment adherence • Unplanned admissions • Low pt/provider congruity • Less decision-making involvement • Depression Harding et al., 2008.
    14. 14. Zier et al., 2009.
    15. 15. Parker et al., 2007.
    16. 16. • Would you want CPR? As you are now? In a less healthy state? Kass-Bartelmes et al, 2003
    17. 17. • Permanent coma “worse than death”: Kass-Bartelmes et al., 2010.
    18. 18. • Dementia “worse than death”: Kass-Bartelmes et al., 2010.
    19. 19. Weeks et al., 2012.
    20. 20. Zier et al., 2012.
    21. 21. • Express optimism • Patient possesses special fortitude • Disbelief in physician’s ability to prognosticate • Prognosis as a “gist” “[…] And we are talking “I don’t give a lot of weight to about my father in this “Ultimately, I don’t think the guess I understand that “I individual number, I tend case, not just any patient. I [doctors] can really know not to trust the eventually [the patient] mayindividual know that my chancecould the percent father of number as I just as the die…I guess muchhave to do better than someone survival unless what the overall feeling that [the hope more.” doctorcomes in dead.”I think is saying…and physician] is conveying.” he will.” Adapted from: Zier et al., 2012.
    22. 22. Data Chosen Role Trust in Provider Cues Patient Framing Ambivalence Coping Style Beliefs History
    23. 23. Experiences Assumptions Education Population Data Provider Professional Norms Chosen Role Patient Data Ambivalence Beliefs
    24. 24. Attributes on which patients and physicians differ: 1. 2. 3. 4. 5. 6. Be mentally aware Be at peace with God Not a burden to family Be able to help others Pray Have funeral arrangements planned 7. Not be a burden to society 8. Feel one’s life is complete Steinhauser et al., 2000.
    25. 25. Actions Experiences Defining Hope Ambivalence Framing Assumptions Tailoring Outcome Affective Cues Avoidance Lack of Trust Confidence Interval
    26. 26. Kyle P. Edmonds, MD kyle.p.edmonds@gmail.com kylepedmonds.com
    27. 27. • • • • • • • • • • • • • • • • • • • • • • • • • 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 consent 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. Delvecchio Good MJ, Good BJ, Schaffer C & SE Lind (1990). American oncology and the discourse of hope. Culture, Med & Psych. 14: 59-79. Dolan P, Hallsworth M, Halpern D, King D, & I Vlaev. Executive Summary: MINDSPACE: Influencing behavior through public policy. Institute for Government. UK. 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. Groopman J (2007). How Doctors Think. Houghton Mifflin Company. New York, NY.
    28. 28. • • • • • • • • • • • • • • • • • • • • • • • • • 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. 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. 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 treatment 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 cancer 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. Reyna VF (2008). Theories of medical decision making and health: An evidence-based approach. Med Decis Making. 28(6): 829-833. 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.
    29. 29. • • • • • • • • • • • • • 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.