Kyle P. Edmonds, MD Institute for Palliative MedicineSan Diego Hospice

Lost in Translation:Prognosis and the worldview of patients and providers

Patients and providers each have their own way of understanding the

world that impact their communication.

Summary

Seeing the World

Seeing the World

Seeing the World

Understanding Impacts Treatment

Weeks et al., 1998.

Understanding Prognosis

Zier et al., 2012.

• Express optimism

• Patient possesses special fortitude

• Disbelief in physician’s ability to prognosticate

• Prognosis as a “gist”

Understanding Prognosis

Adapted from: Zier et al., 2012.

“I guess I understand that

[the patient] may eventually die…I

guess I just have to hope more.”

“[…] And we are talking about my

father in this case, not just any patient.

I know that my father could do

better than what the doctor is

saying…and I think he will.”

“Ultimately, I don’t think [doctors] can

really know the percent chance of

survival unless someone comes in

dead.”

“I don’t give a lot of weight to the

individual number, I tend not to trust the individual number

as much as the overall feeling that [the physician] is

conveying.”

Meanwhile…

Weeks et al., 2012.

Outcome Spectrum

Outcome

Confidence Interval

Actions Experiences

Consistency

Empathy

Sensitivity

Understanding

Honesty

The Patient’s World

Parker et al., 2007.

Patient

DataCues

Framing

Ambival-ence

HistoryBeliefs

Coping Style

Trust in Provide

r

Chosen Role

Emotion

The Patient’s World

• Confirmation bias

• Therapeutic mis-estimation

• Therapeutic optimism

The Patient’s World: Data

• Prior illness

• Prior prognostication

• The “fighter”

The Patient’s World: History

• Subjective data from treating team

• Priming effects

The Patient’s World: Cues

•Discounting opinions•Greater prognostic disparity

The Patient’s World: Trust in Provider

• “We can do nothing or we can give you chemotherapy.”

• “Responding.”

• Number of choices

The Patient’s World: Framing

The Patient’s World: Coping Style

• Defense mechanisms

• Psychiatric risk factors

• Socioeconomic risk factors

• Personality characteristics

• Sick Role Norms

• Assertive Patient Role

• Learned Helplessness

• Social Obligations

The Patient’s World: Chosen Role

• Fear of death

• Cultural requirements

• Generates ambiguity & avoidance

The Patient’s World: Ambivalence

• Affective Narrowing

• State-dependent Learning

The Patient’s World: Emotion

• Spirituality

• Magical Thinking

• Lake Wobegone Effect

• Meaning & hope

The Patient’s World: Beliefs

Patient

Data

Cues

Framing

Ambival-ence

HistoryBeliefs

Coping Style

Trust in Provide

r

Chosen Role

The Patient’s World

The Provider’s World

Provider

Experiences

Population Data

Patient Data

Ambivale-nce

BeliefsChosen Role

Professional Norms

Education

Assump-tions

• Hidden curriculum

• Formulating prognosis

• Recognizing dying

• Different language

The Provider’s World: Education

• Formative

• Proximate

The Provider’s World: Experience

• Patients will ask

• Fact clubbing

• Decisional preferences

The Provider’s World: Assumptions

• Chronic disease optimism

• Acute disease pessimism

• Controlling the “big picture”

• Protecting “hope”

The Provider’s World: Professional Norms

• Population•Disease-specific•Patient location

• Patient•Objective•Subjective

The Provider’s World: Data

• Magical thinking

• Spirituality•Patient (“trump card”)•Provider

•Role of the patient

The Provider’s World: Beliefs

• The soothsayer

• “Sociological ambivalence”

• Generates ambiguity & avoidance

The Provider’s World: Ambivalence

• Exerting control

• Decisional style

• Accepting discomfort

The Provider’s World: Chosen Role

Chosen Role: Physicians & Morbidity

Adapted from Figure: Ubel et al., 2011.

Chosen Role: Nurses & CPR

Adapted from Figure 1: Coffey et al., 2013.

The Provider’s World

Provider

Experiences

Population Data

Patient Data

Ambivale-nce

BeliefsChosen Role

Professional Norms

Education

Assump-tions

Acknowledging the Overlap

Elements to

Negotiate

Provider Perspecti

ve

Patient Perspecti

ve

Outcome Spectrum

OutcomeFraming

Tailoring

Defining Hope

Affective Cues

AmbivalenceAssumptionsAvoidance

Confidence Interval

Lack of Trust

Actions Experiences

Patients and providers each have their own way of understanding the

world that impact their communication.

Summary

Kyle P. Edmonds, MD kyle.p.edmonds@gmail.comkylepedmonds.com

• 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: 1645-1650.

• 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. • Halpern J & RM Arnold (2008). Affective forecasting: An unrecognized challenge in making serious health decisions. JGIM. 23(10: 1708-

1712.

References

• 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

Healthcare 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.• Kessels RPC (2003). Patients’ memory for medical information. J Royal Soc Med. 96: 219-222.• 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.

References

• 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.

• Ubel PA, Angott AM & BJ Zikmund-Fisher (2011). Physicians recommend different treatments for patients than they would for themselves. Arch Int Med. 171(7): 630-634.

• 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.

References