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Hope: Not as fragile as we think

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An in-depth look at hope in medicine drawn from linguistic research with patients & families. Concluding with the concept that hope is much more than medical hope for cure, it is a feature of being …

An in-depth look at hope in medicine drawn from linguistic research with patients & families. Concluding with the concept that hope is much more than medical hope for cure, it is a feature of being human that serves as a powerful coping mechanism.

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  • I encourage you to never think that you are powerful enough to “take away” a person’s hope.
  • Obviously most easily applied to the oncologic patient…Remission represents the point of highest optimism.The illness journey becomes parceled into smaller segments with defined, positive end-points.We (medicine) teach patients that hope only equals cure!“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.)
  • 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?**
  • 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?**
  • 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%).
  • Particularly in US culture, there is a pervasive belief in a positive self-fulfilling prophecy, that “if I say it, it will happen.” This magical belief in the power of positive thinking is so prevalent that fully 73% of physicians will agree with it in relation to prognosis, albeit with a great deal of rationalization.Many surrogates, when confronted with the discordance between theirs and the physician’s prognoses will indicate that they feel the need to be optimistic so as not to negatively impact the course of their loved one. While part of this seems to be avoidance at work, both parties seem to believe that acknowledging poor prognosis publically would undermine any potential for future recovery.That optimism protects them from feeling “at fault” when/if death occurs.[[60% of the public and 20% of trauma health professionals endorse the possibility of a miracle saving a patient in PVS (Wideraet al., 2011.).]](Lee Char et al., 2010.) (Christakis, 1999.) (The et al., 2000.)Image credit: http://4.bp.blogspot.com/_inzAvqxAgEI/TM1qi7nvDqI/AAAAAAAAACM/QFpRcMlZOIA/s1600/pandora.jpg
  • Hope is “short-hand.”It is variably employed as a noun (“I have to have hope”),as a verb (“I just keep hoping”), as vulnerable (“You don’t want to take away hope”) and as lasting (“At least I will always be able to hope”). Looking at hope linguistically, that is in the way that we employ hope in language, can give us insight into its complexity.(Eliott & Olver, 2002.) (Eliott & Olver, 2006.)
  • Noun hope (“Is there no hope”?) is employed in medicine asinvariably inflated with “cure” so that “I have to hope” means “I have to know there is a chance for cure.” In the same way, saying that there is “no hope” means that medicine has nothing more to provide and that death is imminent and unstoppable. Patients are subject to thisVulnerable andAbsolute version of hopeIt is the last thing standing between patients are certain death.Image credit: http://24.media.tumblr.com/tumblr_map5yzBD5y1r9lx2yo1_500.jpg
  • When we think of patientsNoun version (“hope” = curative therapeutics)VulnerabilityLack of curative options means that the patient is “imminently” dying and results in the “killing” of hopeWe teach this concept to patients either actively or tacitly allowing patients to come to understandMedical hope = CureDoing somethingInversely, if the team is treating, if they’re “doing something,” there must be hopeAs you can see, it is important that we as providers keep in mind the many-faceted nature of hope…
  • This meta-analysis looked at concepts of hope across multiple disciplines. Of three categories (realistic, functional, narrative) mentioned by physicians the most (realistic=all docs; functional=palliative docs).Notice the judgmental natureContrast with the concept of “false” hope
  • Hope as a verb (“I have to keep hoping…”) envisions a position of stability and controlThe future isPositiveUnder the patient’s control, even if just because she’s allowed to imagine itWhere the patient is in control relationally and medicallyUncertain and subject to chanceenable the speaker to disavow responsibility for whether or not the preferred outcome is realizedexpress positive desires for themselves or anotherreinforces the interpersonal ties between both partiesmay construe moral obligations upon othersto work to achieve it (allowing the patient to be active in life, even if it’s another’s)Allows the hoper to develop and stipulate a legacy of influencing lives beyond their own.(Eliott & Olver, 2002 & 2006.)Image credit: http://www.nicksartproject.com/hope_sign.jpg
  • As a normal coping mechanism…Even patients who understand may oscillate between more and less realistic hopeAllowing time to process andTriangulate across multiple providersEffort to defend against anxiety & fearCatching them in a moment of less realistic hope does not mean thatThey are in denialThey misunderstandThey haven’t been told the truthThis allows some patients to….(hold)
  • Patients maintain hope throughReligion & prayerLiving in the present & imagining a positive future (“hoping”)Relationships with othersSeeking to control symptoms & situations (parceling medical course)Despite this complexity, medicine has a tendency to view patient’s hope……(in the noun form solely)(McClement & Chochinov, 2008.)“Its emphasis on "will" - if one has enough hope, one may will a change in the course of disease in the body - articulates fundamental American notions about personhood, individual autonomy, and the power of thought (good and bad) to shape life course and bodily functioning.” (Del Vecchio Good et al., 1990.)
  • Hope is a process extending beyond the patientinterpersonal and relational,a social activity that enables patient articulation and affirmation by others of what the patient values,enacts and establishes connections. “…if when asked, “Is there any hope?”, they respond, “For what are you hoping?””(Eliott & Olver, 2002/2006.) (Del Vecchio Good et al., 1990.)Image credit: http://media.photobucket.com/image/recent/mmichael_asfr/HOPE.jpg
  • Represents an initial reluctance to face painful emotionsPreferring to keep hope alive by avoiding discussionMasking painful existential questions (“how can a caring God let this happen”?)AffectiveAbandonment (Don’t give up on me)Fear (Keep trying for me)Anxiety (I don’t want to leave my family)Depression (I’m scared of dying)CognitiveIncomplete understandingWanting reassurance That the best medical care has been providedThat all possible life support is being providedSpiritualVitalism (I value every moment of life)Faith in God’s will (Only He can decide)FamilyDiffering perceptions (I can’t bear the thought of leaving my family)Family conflict (My husband will never let me go)Children or dependents (I don’t want to bother my children)Image credit: http://images.flatworldknowledge.com/portolesediashumrel/portolesediashumrel-fig01_x002.jpg
  • Use “hope” as a way to explore the person’s goals.Humanize yourself by sharing in their hope.If they remain resistant, share your fear: “I’m afraid that you might get sicker and we won’t know how best to take care of you” or “I’m afraid that you won’t have the resources you need to help you stay out of the hospital.”
  • Doctor encouragement of participation significantly predicted the patient’s level of recall of presented facts (number of facts was not) increased anxiety level (stable across two weeks). This may be an indicator of “decisional conflict” a byproduct of piercing the ambiguity and avoidance that was protecting the patient from decision-making. initial anxiety incurred by a difficult decision will dissipate over time,after which an increased sense of control may confer psychological benefits in the long-term.
  • Yerkes-Dodson Curve.Classic medical memory literature demonstrates a u-shaped curve for recallVery high and very low anxiety associated with less recall of medical informationOptimal anxiety was associated with the best recall. (Kessell, 2003.)Sustained ambivalence, staying inside that bubble, itHelps patients endure treatment phase of their illness, butIs later seen as illusory and having impeded their planning Thereby makingit more difficult to to make practical arrangementsaccept impeding death, andto say goodbye. With the bubble of ambivalence intact, avoidance of fear drives decision-making.(The et al., 2000.)Image credit: http://www.helpingyouharmonise.com/sites/default/files/images/YerkesDodson.JPG
  • Sense of Coherence Theory.Antonovsky.“Comprehensibility. Manageability. Meaningfulness.”Image credit: http://fusioninnovation.net/image/coherence.jpg
  • Palliative consultsResult in more accurate prognostic understanding by patientsAre tailored to individual patientsAvoid dwelling in population dataAffectively more pessimisticFraming of data is more pessimistic Linguistic scoring indicates more pessimism“Optimistic cue: Examples: The good news is I expect you will live for a few more months. (I believe your chances of surviving up to six months are quite good.)“Pessimistic cue: Examples: Unfortunately, I expect you will only live for a few months. (I believe your chances of surviving more than six months are very poor.)”indicates a decreased level of ambivalence. “…the presence of pessimistic cues (similar to those measured in this present study) resulted in greater concordance in prognosis perceptions between patients and their doctors.” (Robinson et al., 2008.)Image credit: http://www.benreed.net/wp-content/uploads/2010/10/unique.jpg
  • Transcript

    • 1. KYLE P. EDMONDS, MD A S S I S TA N T C L I N I C A L P R O F E S S O R D O R I S A . H O W E L L PA L L I AT I V E C A R E S E R V I C E U C S D H E A LT H S C I E N C E S
    • 2. Summary
    • 3. Illness Journey CRISIS Dx Focus on Curative Therapy Remission Peace of Mind Reoccurrence CRISIS Further Curative Therapy CRISIS No Further Curative Options
    • 4. The Provider’s World Experiences Assumptions Education Population Data Provider Professional Norms Patient Data Ambivalence Chosen Role Beliefs
    • 5. The Patient’s World Data Chosen Role Trust in Provider Cues Patient Framing Ambivalence Coping Style Beliefs History
    • 6. Acknowledging the Overlap Elements to Negotiate Patient Perspective Provider Perspective
    • 7. Elements to Negotiate Hope Optimism Meaning Control
    • 8. The Power of Optimism Thoughts influence outcomes ◦ Optimism ◦ Avoidance ◦ Prognostication ◦ Miracles
    • 9. “Hope”: The Word •A “short-hand” term •Objective v. Subjective •Noun v. Verb •Cultural Pressures
    • 10. “Hope”: The Noun • Limited to medicine • “No hope” • Negative future • Absolutes • Person • Subject to • Biological • Focus on Death Adapted from Table 1: Eliott & Olver, 2006.
    • 11. “Hope” in Medicine Eliott & Olver, 2002.
    • 12. “Hope” in Medicine •“Realistic” • Balanced / adjusted to “truth” • Measuring words • Fragile Olsman et al., 2014.
    • 13. “Hope”: The Verb • More than medicine • “I hope” • Positive future • Possibilities • Patient • The subject of • Relatedness • Focus on Life Adapted from Table 1: Eliott & Olver, 2006.
    • 14. Patient’s “Hope” Jacobson et al., 2013.
    • 15. Patients’ “Hope” Eliott & Olver, 2002.
    • 16. “Hope”: Resilient •Beyond medical definition •Words have power •Window to patient goals
    • 17. Acknowledging the Overlap Elements to Negotiate Patient Perspective Provider Perspective
    • 18. Small Groups: “Sarah” • 58yo mother of three with metastatic colorectal CA • Admitted with recurrent SBO (being medically managed) and pain out of control • You broach the concept of hospice with her •“Oh no, doctor I still have HOPE to get stronger and have more chemo… •“I want to do EVERYTHING possible!”
    • 19. Meaning Making: “Do Everything” •Affective •Cognitive •Spiritual •Family Quill et al., 2009.
    • 20. In Words •“Hoping for the best and planning for the worst” •Align with patient •Explore & reframe “everything”
    • 21. Communication In Action: Participation Brown et al., 2004.
    • 22. Communication In Action: Anxiety
    • 23. Communication in Action: Outcomes Influences to Coping ◦ Challenge is Understood ◦ Resources to Cope ◦ Demands are Worthy of Investment
    • 24. Communication In Action: Palliative Consultation More accurate prognostic understanding1 ◦ Addressed QOL2 ◦ Focus on unique patient2 ◦ Contained more pessimistic cues2 1. 2. Temel et al., 2011. Gramling et al., 2012.
    • 25. Summary Hope is much more than medical hope for cure, it is a feature of being human that serves as a powerful coping mechanism. Kyle P. Edmonds, MD kpedmonds@ucsd.edu O: 619.471.9424
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