Lost in Translation #2/4


Published on

Second in a series of presentations focused on interprofessional research related to medical communication. Reviews the perspectives of the patient & the provider with clarification aided by a discussion of sharing prognosis.

Published in: Health & Medicine
  • Be the first to comment

  • Be the first to like this

No Downloads
Total views
On SlideShare
From Embeds
Number of Embeds
Embeds 0
No embeds

No notes for slide
  • This presentation will be, to a degree, fairly conceptual but the take-home point is that providers and patient’s each have their own ways of seeing the world. Being cognizant of that and working with that information will allow you to ensure that you are best able to convey the point you want to convey in a way that will have an impact on the patient in a meaningful way without causing undue trauma.
  • “The Mercator projection was created to help European sailors navigate the world in straight lines. It provides a true reflection of the shape of the land masses, so that's ok...except for the fact that it distorts the size of land masses.”Mercator: http://citizenbay.typepad.com/.a/6a00d83454b5d369e20147e1f4653f970b-800wi
  • “On the Gall-Peters map, the areas of equal size on the map reflect areas of equal size on the globe.”Peters Projection: http://citizenbay.typepad.com/.a/6a00d83454b5d369e20148c8043f5e970c-800wi
  • Image credit: http://4.bp.blogspot.com/-A_upY5uFwWk/TcAjeUZIpoI/AAAAAAAAAKA/U8CRA-4oB1I/s1600/Mapa.+Comparaci%25C3%25B3n+Mercator+y+Peters.JPG
  • Behavioral economics. MINDSPACE mnemonic: Messenger. Incentives. Norms. Defaults. Salience. Priming. Affect. Commitments. Ego.Image: http://www.scribd.com/doc/42975012/2/Executive-summary
  • 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
  • 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.
  • …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.”
  • 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.)
  • ColorsLight red: Received entirely from the teamPatient perceptionsProviders may not mean to share these elementsPurpleReceived from the teamAnd generated by the patientImpacted 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.)
  • Understanding of prognosis does not differ between those hearing numbers and those hearing qualitative statements.Surrogates: use physical signs and temporal changes to help them prognosticate. If they don’t know the patient’s wishes, they are more likely to interpret non-verbal behavior as expressions of a will to live.Patients seek to triangulate data from multiple sources over multipledays, from multiple physicians when prognosticating. Confirmation biasIgnoring information that challenges a hypothesisIn favor of that which supports it. Could be objective or subjective data.Therapeutic misestimation, for instance perceiving worse 1-year QOL outcomes after pulmonary lobectomy than are true, colors this data.Therapeutic optimism: a high estimate despite a correct understanding that the probability is low(Kuehlmeyeret al., 2012.) (Lee Char et al., 2010.) (Zieret al., 2009.) (Boyd et al., 2010.) (Cykertet al., 2010.) (Sulmasyet al., 2010.)Image credit: http://www.isgtw.org/sites/default/files/img_2012/DNA3.JPG
  • Image credit: http://cdn2.americancivilwar.com/americancivilwar-cdn/civil_war_map/battle_of_gettysburg.jpg
  • …from treating teamLanguage choices / prosidyBody languageInvolvement or avoidanceHow many of you have ever hesitate prior to entering a patient’s room out of a sense of avoidance or dread?May not be actual responses by the team but just perceived as such by the patientDecisions can be primed byWordsSightsSmellsImage credit: http://www.kgkl.net/wp-content/uploads/2012/10/4757913318_a9dd65ace3_z.jpg
  • Without trust, the difference between patient and provider estimates of survival is even larger(Lee Char et al., 2010.)Image credit: http://www.microsoft.eu/Portals/0/img/event/Tech_policy/human%20trust%20image.jpg
  • Lens through which everything passes.The ambiguous words used by physicians can be colored by the patient. Examples include “treatment,” which patients see as an inherently optimistic term“tumor shrinkage” “responding to treatment.”“clean scans”Social psychology teaches us that people are happiest when they choose between two options…and they make the best choices! Omission-Commission BiasHarm that results from taking an actionIs worse than harm that results from not taking an action (If chemo is framed as the standard, this makes the decision to forego it an “act” subject to this bias?)People anticipate commission harmWill result in more regretIs morally worse.(Reyna, 2008.) (The et al., 2000.)Image credit: http://thinkingcap1.files.wordpress.com/2010/04/ambiguous_illusion.jpg?w=450
  • Risk factorsbeing more educated, having a partner, and being an inpatient each had an independent and significant predictive influence on poorer coping…” (Chochinovet al., 2009.)Neuroticism: Anxiety, hostility, depression, self-consciousness, impulsiveness, vulnerability to stress  person coming from a position of vulnerability to maladaptive coping. (Chochinovet al., 2006.)Affective forecastingBeliefs about ability to emotionally adaptPitfallsFocalism (focus more on what will change than what will stay the same); this is worsened by feeling fearfulImmune neglect (fail to envision that their own coping skills will work to decrease unhappiness)Failure to predict adaptation (fail to envision changes in their values)Bottom line: we’re not good at this! (Halpern & Arnold, 2008).Image credit: http://1.bp.blogspot.com/-btpfApAvZCw/Toxin_WeiyI/AAAAAAAAAS4/eROCWfTZXKY/s1600/coping+adapting.jpg
  • For other patients, they come to believe that medicine will manipulate them into doing what it wants whether or not they resist.Assertive vs. passive roleBy allowing their provider more control, patients can avoid fear-inducing information, protect themselves from complex decision-making and avoid responsibility for bad outcomes. The sick roleculturally defined, requires a desire to get well, cooperation with the provider and actively attempting to get well. Patients are also culturally pressured to exude optimism; to do “battle.” (Sulmasy, 2010.) (Christakis, 1999) (Hancock et al., 2007.) (Clover et al., 2004.) (de Haes & Koedoot, 2003.)Image credit: http://therumpus.wpengine.netdna-cdn.com/wp-content/uploads/2012/07/C0097196-Main_in_pain_artwork-SPL-e1342125470896.jpg
  • Culturally entrained fear of deathManaging complexityAvoiding blame(The et al., 2000.)Image credit: http://jeremykun.files.wordpress.com/2011/07/low-complexity-circles.png
  • Attentional narrowing: “you have x disease and it will impact you for the rest of your life”In that moment, all the pt can focus on is the impact of diseaseExtraneous data becomes less salient. (Kessels, 2003)This may explain timing preferences for data…“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.)State-dependent learningMemory becomes keyed to emotional state at time of learningData provided when the pt is in a stress state will not be successfully recalled once in a more relaxed state. (Kessels, 2003)Image credit: http://blog.kensington.com/security/files/2011/09/Anxiety.jpg
  • When patients overestimate their prognosis, they explain themselves by invoking “hope & optimism; battle; and faith.”Common modern beliefs includePersonal will can effect a change in disease courseHope and optimism are the same thingHope is defined by the medical systemCommon spiritual concerns include “(1) hope for a miracle, (2) refusal to give up on the God of faith, (3) a conviction that every moment of life is a gift from God and is worth preserving at any cost and (4) a belief that suffering can have redemptive value.” those who doubt providers based on religious concern are four times more likely to demand ongoing disease directed therapy.In 2007 by the Pew Forum on Religion & Public Life79% of those surveyedBelieved that “miracles still occur today as in ancient times.”Garrison Keillor’s Lake Wobegon“where all the women are strong, all the men are good looking, and all the children are above average” describes the belief that an individual is somehow able to outperform expectations. It may be true or it may represent a cognitive bias known as illusory superiority.Hope and meaning are things that we will talk about in more detail later.(Brett & Jersild, 2003.) (Sulmasyet al., 2010.) (Zieret al., 2009.) (Heylandet al., 2006.) (Eliott & Olver, 2002.)Image credit: http://blogs.citypages.com/blotter/lake-wobegon.jpg
  • 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.
  • Concept of “truth dumping.”An behavior that representsFreeze responseAvoidanceVocabulary of medicineLearning and then un-learningExpediencyImage credit: http://www.octhebeach.com/museum/images/Museums-157b.jpg
  • Providers rely on their knowledge of index cases, those personally experienced and those in the literature. Powerful recent experiences risk inducing availability bias. Peer group that is highly capable of abstract thinking.(White et al., 2010.)Image credit: http://liveyourtruelife.org/wp-content/uploads/2012/09/life-path-meanings1.jpg
  • This is the ladder of inference from the organizational psychologist, Chris Argyris. Providers assume many things about their patients a patient will ask about prognosis if they want to know (patients assume that providers will share important information with them without being asked). The only time we are known to initiate conversations about care preferences spontaneously is when patients are heavily functionally impaired. That repeating facts will help patients to better understand.That we know how the patient and her family want to make this decision, this is related to cultural norms (presently, we assume that patients want all the facts, all the choices and that they want to make the decision themselves, without our input). (Hancock et al., 2007.) (White et al., 2010.) (Wagner et al., 2010.) (Clayton et al., 2005.) (Eliott & Olver, 2002.) (The et al., 2000.)Image credit: http://2.bp.blogspot.com/_fQVXqQDD2TQ/SlIWpIAd_sI/AAAAAAAAAC0/yin3iQGr3Gs/s320/Ladder+of+Inference.jpg
  • In our culture, the “big picture” the “reality” of the situation is assumed to be the provider’s to formulate and control. Patients & families, therefore, must ultimately adopt this big picture as their own. It is the job of the team to “bring” the patient’s to this “big picture.”The “sequential fail-safe mechanism” (Christakis, 1999) exists in professional norms regarding prognosis: “(1) do not make predictions, (2) keep what predictions you do make to yourself, (3) do not communicate predictions to patients unless asked, (4) do not be specific, (5) do not be extreme and (6) be optimistic.”(Norton & Bowers, 2001.)Image credit: http://www.boiseweekly.com/imager/poll-pessimism-over-taxes-crime-international-tensions/b/big/2792770/1806/half_full_glass.jpeg
  • PopulationNormative curves forSpecific diseasesLocation (i.e. ambulatory vs. ICU)Patient dataNumbers, exam findingsPatient experience, history perception of diseaseProviders tend to see patients as representative of the standard patient with this disease. Although this may be true, patients see themselves as having unique attributes relevant to their prognosis and course.Note risks of premature closure and search satisfaction biases. (White et al., 2010.)Image credit: http://medstudentbooks.com/wp-content/uploads/2012/03/normal-curve.png
  • Providers share several beliefs with patients that I will discuss shortly. SpiritualityThere is some literature with regard to the impact of the personal spirituality of providers, but it is not conclusive. Providers are known to generally discount the spiritual beliefs and meaning making of patients, however, as a distraction to the work at hand. (Lo et al., 2002.)Image credit: http://timewellness.files.wordpress.com/2012/06/superstition-luck-four-leaf-clover.jpg?w=360&h=240&crop=1
  • Providers are known to refer to the art of prognostication as hubristic and out of their scope of practice. Sociological ambivalenceThe impossible task of balancing optimism, honesty, accuracy, realism, hopefulness, humility and foresight, which leads to a state of sociological ambivalence and results in active efforts to avoid the topic or to approach it with as much ambiguity as possible. This ambivalence often leads us to short-circuit our effort at sharing prognosisGive the bad newsThen immediately pivot and distract both yourself and the patient with talk of disease-directed therapy.(The et al., 2000.) (Christakis 1999.)
  • Should they choose to take control of the care (or should patients relinquish control), providers can exert their authority as medical experts; they can frame information in a way that controls meaning; and they can control access to medical treatment.Decision controlPaternalistic model of deliberation Facilitative models see the provider walking the patient & family through the decision. With the deliberative model, the provider shares her opinion. Provider’s ability to accept and sublimate the anxiety generated during these discussionsWill discuss more in #3Now let’s look at a couple of studies that examine providers making treatment decisions for patients vs. for themselves.(Slomka, 1992.) (Heylandet al., 2006.)Image credit: http://media.economist.com/sites/default/files/cf_images/20060408/D1406SB4.jpg
  • Pause! This histogram is not intuitive!Study in JAMA-IMPhysicians provided with vignettes with two treatment options for either themselves as the patient or for a patient they were treatingOne: Same cure rate, lower mortality, higher morbidityTwo: Same cure rate, higher mortality, no morbidity****Treatment decision = option two “higher mortality, no chance of morbidity with same cure rate”Physicians make different choices For patients, we lean toward recommending higher survival options despite higher side effect riskFor ourselves, we tend to choose lower side effect options even if higher chance of death. Betrayal aversion: harm caused by something designed to prevent harm worseOmission-Commission Bias: worse if harm comes from choosing something (Ubelet al., 2011.)
  • Study in International Nursing Review****International study of acute inpatient nurses preferences in scenarios, this graph represents CPR preferencesFactors in nurses’ decisionsduty of care as a nurse,uncertainty of acute outcome, lack of knowledge of patient’s wishes, personal experience with a family member, experiences of similar clinical situations, the patient’s age and family being out of contact. (Coffey et al., 2013.)
  • 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 #2/4

    1. 1. Kyle P. Edmonds, MD Institute for Palliative Medicine San Diego Hospice
    2. 2. Weeks et al., 1998.
    3. 3. Zier et al., 2012.
    4. 4. • Express optimism • Patient possesses special fortitude • Disbelief in physician’s ability to prognosticate • Prognosis as a “gist” “I“[…] And we lot of weight don’t give a are talking toabout my father in thinkI the individual number, “Ultimately, I don’t this “I guess I understand that case, not just any patient. I tend not to trust know [doctors] can reallythe [the patient] may individual number as could know that my father much the percent chance of eventually die…I guess I as the overall feeling that do better than someone survival unless what the just have to hope more.” doctor is saying…and I [the physician] is comes in dead.” think he will.” conveying.” Adapted from: Zier et al., 2012.
    5. 5. Weeks et al., 2012.
    6. 6. Actions Experiences Outcome Confidence Interval
    7. 7. Parker et al., 2007.
    8. 8. Data Emotion Cues Chosen Role Trust in Provider Framing Patient Coping Style Ambivalence History Beliefs
    9. 9. • Confirmation bias • Therapeutic mis-estimation • Therapeutic optimism
    10. 10. • Prior illness • Prior prognostication • The “fighter”
    11. 11. • Subjective data from treating team • Priming effects
    12. 12. • Discounting opinions • Greater prognostic disparity
    13. 13. • “We can do nothing or we can give you chemotherapy.” • “Responding.” • Number of choices
    14. 14. • Defense mechanisms • Psychiatric risk factors • Socioeconomic risk factors • Personality characteristics
    15. 15. • Sick Role Norms • Assertive Patient Role • Learned Helplessness • Social Obligations
    16. 16. • Fear of death • Cultural requirements • Generates ambiguity & avoidance
    17. 17. • Affective Narrowing • State-dependent Learning
    18. 18. • Spirituality • Magical Thinking • Lake Wobegone Effect • Meaning & hope
    19. 19. Data Chosen Role Trust in Provider Cues Patient Framing Ambivalence Coping Style Beliefs History
    20. 20. Experiences Assumptions Education Population Data Provider Professional Norms Chosen Role Patient Data Ambivalence Beliefs
    21. 21. • Hidden curriculum • Formulating prognosis • Recognizing dying • Different language
    22. 22. • Formative • Proximate
    23. 23. • Patients will ask • Fact clubbing • Decisional preferences
    24. 24. • Chronic disease optimism • Acute disease pessimism • Controlling the “big picture” • Protecting “hope”
    25. 25. • Population • Disease-specific • Patient location • Patient • Objective • Subjective
    26. 26. • Magical thinking • Spirituality • Patient (“trump card”) • Provider • Role of the patient
    27. 27. • The soothsayer • “Sociological ambivalence” • Generates ambiguity & avoidance
    28. 28. • Exerting control • Decisional style • Accepting discomfort
    29. 29. Adapted from Figure: Ubel et al., 2011.
    30. 30. Adapted from Figure 1: Coffey et al., 2013.
    31. 31. Experiences Assumptions Education Population Data Provider Professional Norms Chosen Role Patient Data Ambivalence Beliefs
    32. 32. Elements to Negotiate Patient Perspective Provider Perspective
    33. 33. Actions Experiences Defining Hope Ambivalence Framing Assumptions Tailoring Outcome Affective Cues Avoidance Lack of Trust Confidence Interval
    34. 34. Kyle P. Edmonds, MD kyle.p.edmonds@gmail.com kylepedmonds.com
    35. 35. • • • • • • • • • • • • • • • • • • • • • • • • • • 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. 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.
    36. 36. • • • • • • • • • • • • • • • • • • • • • • • • • 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. 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 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. 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.
    37. 37. • • • • • • • • • • • • • • • 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): 630634. 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 b urdensome? 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.