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

Lost in Translation:Acknowledging & negotiating

The are certain psychosocial features that must be acknowledged & negotiated for each patient-provider communication.

Summary

Outcome Spectrum

OutcomeFraming

Tailoring

Defining Hope

Affective Cues

AmbivalenceAssumptionsAvoidance

Confidence Interval

Lack of Trust

Actions Experiences

Illness Journey

CRISIS

CRISIS

CRISIS

Peace of Mind

Patient

Data

Cues

Framing

Ambival-ence

HistoryBeliefs

Coping Style

Trust in Provider

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

Provider Catalysts: Emotional regulation

Event• Empathy• Perspectiv

e• Memory

Arousal• Emotional

regulation

Emotion• Sympathy

Behavior• Selfless

Pro-social• Other-

centered

Adapted from: Halifax, 2011.

Acknowledging the Overlap

Elements to

Negotiate

Provider Perspecti

ve

Patient Perspecti

ve

Elements to Negotiate

Control Needs

Meaning

Making

Location of

Hope

Power of

Optimism

• Overall Situation

• Individual Technologies

• Peak Effect

Elements: Meaning Making

Meaning Making: Decisional Categories

Johnson et al., 2011.

Meaning Making: Peak Effect

Ubel et al., 2011.

Peak Experien

ceEnd

Experience

Average Experien

ce

• Affective

• Cognitive

• Spiritual

• Family

Meaning Making: “Do Everything”

Quill et al., 2009.

• Prognosis

• Roles

• Interventions

Elements: Control Needs

• Thoughts influence outcomes•Optimism•Avoidance•Prognostication•Miracles

Elements: The Power of Optimism

• A “short-hand” term

• Objective v. Subjective

• Noun v. Verb

• Cultural Pressures

Elements: Location of Hope

Location of Hope: “Hope” the Noun

• Limited to medicine

• “No hope”

• Negative future

• Absolutes

• Patient •Subject to•Biological

•Focus on Death

Adapted from Table 1: Eliott & Olver, 2006.

Location of Hope: “Hope” the Verb

• More than medicine

• “I hope”

• Positive future

• Possibilities

• Patient•The subject•Related

•Focus on Life

Adapted from Table 1: Eliott & Olver, 2006.

Location of Hope: Patient’s “Hope”

Jacobson et al., 2013.

Location of Hope: Patients’ “Hope”

“…some patients may hold that ‘there is no hope’ yet conclude that

‘one can always hope.’”

Eliott & Olver, 2002.

Location of Hope: “Hope” in Medicine

Eliott & Olver, 2002.

• Beyond medical definition

• Words have power

• Window to patient goals

Location of Hope: “Hope” is Resilient

Acknowledging the Overlap

Elements to

Negotiate

Provider Perspecti

ve

Patient Perspecti

ve

Communication In Action: Participation

Brown et al., 2004.

Communication In Action: Anxiety

• Influences to Coping•Challenge is Understood•Resources to Cope•Demands are Worthy of Investment

Communication in Action: Outcomes

• More accurate prognostic understanding1

•Addressed QOL2

•Focus on unique patient2 •Contained more pessimistic cues2

Communication In Action: Palliative Consultation

1. Temel et al., 2011.2. Gramling et al.,

2012.

The are certain psychosocial features that must be acknowledged & negotiated for each patient-provider 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.• 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.

References

• Groopman J (2007). How Doctors Think. Houghton Mifflin Company. New York, NY. • 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

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.• 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 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.• 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.

References

• 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.

References