Negotiating Uncertainty

1. Negotiating Uncertainty Hope, Truth-telling, & Ethics in Professional Caring Catherine Simpson, PhD(c), IDPHD Program Dalhousie University, Halifax, NS, Canada

2. 8/23/2012 2 Overview I. Introduction Starting with stories� II. Theory Themes: hope, bioethics, truth-telling, an �ethic of care� III. Application Expanding the relevance - hope & chronic illness IV. Integration Exploring our own experiences - small group discussion Learning from each other - group experience & reflections V. Conclusion Summary Food for thought�

3. 8/23/2012 3 Goals & Objectives A richer understanding of, and appreciation for, the nature & role of hope as an ethical focus for teams committed to providing truly patient-centred care. With this goal in mind we will: Begin with a definition of hope relevant to HC Examine theory related to hope & ethics in HC Apply this theory in different case contexts Begin to integrate it through small group discussion of personally relevant cases/experiences Share emerging insights in the larger group

4. 8/23/2012 4 I: Introduction 3 cases referred to CEC: Case 1 - PC context, pt is a 53 yo mother of 2, divorced, Dx 2 yrs, end stage sarcoma DNR, but wants everything else done: blood, Ab�s Case 2 - Rehab context, 24 yo male, Hx of traumatic spinal cord injury (mos), parapleg. D/C plan in place - pt refusing to leave hospital Case 3 - Rehab context, 48 yo mother of 1, post-Sx spinal cord compl�s - quadraplegia pt refusing: a) to eat or drink

5. 8/23/2012 5 What is at issue� for whom? Case 1: Pt: I want everything done� Subtext: My hope is to live another hour, day, week,� HCPs: Convincing her to change her goals of care� Subtext: we want her to have a peaceful death� Case 2: Pt: I am not ready to go home� Subtext: Unless I get better I can never go home� HCPs: Getting him to accept reality that this is as good as it gets� subtext: we want to get rid of these �false� hopes so he will go home� Case 3: Pt: I am not going to eat or drink� Subtext: Unless something changes I have nothing to live for� HCPs: We think she should not be allowed to do this� Subtext: we don�t want her to die� Real issues for all: uncertainty & hope(s)� HCPs� questions suggest underlying hopes: case 1 - a more realistic EOL plan - less prolonged dying & anguish; more chance for supportive care to her and other pts; one final bleed rather than multiple, ongoing, horrendous,� (hope is she doesn�t bleed on my shift) Case 2: wanted more for pt, sad he has plateaued here, prefer pts to be happy and at peace with whatever successes they have, measure of independence, some potential for adjustment to circumstances and pursuit of quality in life. Case 3: they are fond of her, want to see her happily living at home, finding new ways to express her art, want her spouse to take an active interest and be supportive, want to be able to bring her son into the loop, uncomfortable with pts choosing to end their lives, wondering about their own abilities as care providers. Patients� views are different: pt 1 - I want everything done until I am no longer breathing or my heart stopsHCPs� questions suggest underlying hopes: case 1 - a more realistic EOL plan - less prolonged dying & anguish; more chance for supportive care to her and other pts; one final bleed rather than multiple, ongoing, horrendous,� (hope is she doesn�t bleed on my shift) Case 2: wanted more for pt, sad he has plateaued here, prefer pts to be happy and at peace with whatever successes they have, measure of independence, some potential for adjustment to circumstances and pursuit of quality in life. Case 3: they are fond of her, want to see her happily living at home, finding new ways to express her art, want her spouse to take an active interest and be supportive, want to be able to bring her son into the loop, uncomfortable with pts choosing to end their lives, wondering about their own abilities as care providers. Patients� views are different: pt 1 - I want everything done until I am no longer breathing or my heart stops

6. 8/23/2012 6 Perspectives� For the team members? difficulty negotiating a care plan they can feel good about seeing pt�s hope(s) as the main problem uncertainty - how to change pt�s hope & on what basis Another way to label this�? ethical dilemma - for HCP team; values, prof�l practice, Why is it important to find a way to address these concerns? motivation, communication, behaviour therapeutic relationship decision-making & care-planning

7. 8/23/2012 7 II: Theory Issues: hope/�false� hope & �truth-telling� doing the �right� thing - professional ethics; for this patient v. for all patients care-planning & decision-making - communication Taking into account that perspectives vary: By agent: patient& family; HCPs; hospital; society By context: acute care v. PC v. community-based variation by service - eg., ICU, geriatrics, etc variation inter- & intra-community - rural, urban, SES, etc Assuming if they tell the pt he has plateaued with therapy [truth-telling] he will lose his hope, become demoralized, give up his will to live, turn up his toes and die. Article concerning hope in men with spinal cord injuries** They are equating their evaluation of his achievement in therapy with the �Truth� as if there is only one truth here and they have cornered the market on it. Which leads into their concern to do the �right� thing--what is the right thing, for whom, and is there only one right thing to be done? Why is truth-telling considered to be the right thing, or the thing to be sought after in these cases? Notion of �fiduciary relationship� - trust �A fiduciary is one who owes another the duties of good faith, trust, confidence, and candor.� p85 , Ben Rich, from Ward Ethics: Dilemmas for medical students and doctors in training; Kushner & Thomasma, 2001: Cambridge University Press, Cambridge, UK Truth-telling (candor) only part of medicine since late 20th century. Doing the right thing for the pt (from the pt�s point of view) may be the wrong thing for others, e.g., society, hospital administrators, etc.--calls for a balancing of needs and perspectives; Ethics�is based on the assumption that while there may not be one particular right answer�some answers will be more right than others (Jiwani, 2001)Assuming if they tell the pt he has plateaued with therapy [truth-telling] he will lose his hope, become demoralized, give up his will to live, turn up his toes and die. Article concerning hope in men with spinal cord injuries** They are equating their evaluation of his achievement in therapy with the �Truth� as if there is only one truth here and they have cornered the market on it. Which leads into their concern to do the �right� thing--what is the right thing, for whom, and is there only one right thing to be done? Why is truth-telling considered to be the right thing, or the thing to be sought after in these cases? Notion of �fiduciary relationship� - trust �A fiduciary is one who owes another the duties of good faith, trust, confidence, and candor.� p85 , Ben Rich, from Ward Ethics: Dilemmas for medical students and doctors in training; Kushner & Thomasma, 2001: Cambridge University Press, Cambridge, UK Truth-telling (candor) only part of medicine since late 20th century. Doing the right thing for the pt (from the pt�s point of view) may be the wrong thing for others, e.g., society, hospital administrators, etc.--calls for a balancing of needs and perspectives; Ethics�is based on the assumption that while there may not be one particular right answer�some answers will be more right than others (Jiwani, 2001)

8. 8/23/2012 8 Hope pervasive, illusive concept Definition: Hope is an emotional attitude related to: desires/wants re: particular outcome(s) personal values/goals actively imagined, realizable possibilities a dynamic of personal agency (Christy Simpson, 2000, The Intersections of Hope, Health & Illness: moral responsibilities of health care providers; PhD thesis) What does this mean in the HC context? individualistic imaginative potential agentic relational Hope: Put another way, the problem seems to be one of knowing how to incorporate the hope-related concerns into best practice on the basis of both relevant care and ethics guidelines. Perakyla�s (1991) study of interactions between healthcare providers and seriously ill patients in a Finnish hospital revealed a dynamic he referred to as �hope work� which he defines as �recurrent conversational activity whereby the individual identities of the patient and the staff are explicated in terms of the hopefulness of the situation� . Perakyla viewed �hope work� as an effort (largely unconscious) on the part of healthcare providers to sustain the legitimacy and relevance of medical practice in the face of hard-to-integrate realities of death and dying, a drive that intensified when practitioners found themselves implementing interventions of questionable value. Such a dynamic reveals something of the nature of hope as a factor for practitioners as much as for patients, and attests to the continuing significance of hope for those on both side of the healthcare encounter. Context & person relative: who you are makes a difference in what you hope for or whether you have hope (are hope-full); most acutely felt at times of greater uncertainty and transition (vulnerability), e.g., illness and therefpre the HC context. Imagination & possibility both are a part; thus it is partly the unpredictability, uncertainty of illness that enables and encourages hope to exist. Agency: hope entails action, it is not passive, e.g., arrange to see MD, take Rx, explore symptoms on internet Community/relationships matter: peer scaffolding by significant others, e.g., partner, family, friends, HCP�s, (McGeer) Biomedicine: seduction of scientific probability as an illusion of certainty; population stats v. n=1; art of interpretation - hope (using possibility) adds particular lens to this interpretation; Naylor paraphrasing Osler:�let us agree that good clinical medicine will always blend the art of uncertainty with the science of probability� - leaving room for hope� Article by Thorne on how cancer pts use numerical Px figures - to support hope; to give up hope Hope: Put another way, the problem seems to be one of knowing how to incorporate the hope-related concerns into best practice on the basis of both relevant care and ethics guidelines. Perakyla�s (1991) study of interactions between healthcare providers and seriously ill patients in a Finnish hospital revealed a dynamic he referred to as �hope work� which he defines as �recurrent conversational activity whereby the individual identities of the patient and the staff are explicated in terms of the hopefulness of the situation� . Perakyla viewed �hope work� as an effort (largely unconscious) on the part of healthcare providers to sustain the legitimacy and relevance of medical practice in the face of hard-to-integrate realities of death and dying, a drive that intensified when practitioners found themselves implementing interventions of questionable value. Such a dynamic reveals something of the nature of hope as a factor for practitioners as much as for patients, and attests to the continuing significance of hope for those on both side of the healthcare encounter. Context & person relative: who you are makes a difference in what you hope for or whether you have hope (are hope-full); most acutely felt at times of greater uncertainty and transition (vulnerability), e.g., illness and therefpre the HC context. Imagination & possibility both are a part; thus it is partly the unpredictability, uncertainty of illness that enables and encourages hope to exist. Agency: hope entails action, it is not passive, e.g., arrange to see MD, take Rx, explore symptoms on internet Community/relationships matter: peer scaffolding by significant others, e.g., partner, family, friends, HCP�s, (McGeer) Biomedicine: seduction of scientific probability as an illusion of certainty; population stats v. n=1; art of interpretation - hope (using possibility) adds particular lens to this interpretation; Naylor paraphrasing Osler:�let us agree that good clinical medicine will always blend the art of uncertainty with the science of probability� - leaving room for hope� Article by Thorne on how cancer pts use numerical Px figures - to support hope; to give up hope

9. 8/23/2012 9 Hope (cont�d) �In the heart of each of us, there is a voice of hope, a small voice that yearns to say �yes� to life. If nurtured and strengthened, it invites, encourages, pulls, pushes, cajoles, and seduces us to go forward. The experience of hope is not tidy. It is not something apart from love and courage and all the dynamics of the human spirit and human relationships. It is ever-present in our lives. Whether viewed as a human need, a biological life force, a mental perspective, or an external pull to transcend self, hope is capable of changing individual lives. It enables individuals to envision a future in which they are willing to participate.� Jevne (The Voice of Hope: Heard Across the Heart of Life, 1994)

10. 8/23/2012 10 Hope in Situ� Thinking back to the cases, � and keeping definitional implications in mind: hope is context & person relative the presence/absence of hope is most acutely felt in times of uncertainty & change hope can be influenced by significant others (though it has more resilience than we might think) What about the hope dynamics in the three cases? desires/values/goals, identity - emotion: anger, fear, uncertainty motivation (conscious and unconscious, pt�s & HCPs�) - words &/or behaviour - communication integrity of the therapeutic relationship - trust, decision-making potential to support or erode pt�s sense of agency patient�s/family�s experience of care How to proceed�applying the �ethics� lens to hope� Pt - improved fcn; return to pre-injury level; independence HCP - these have changes, I.e., hoped pt would engage with program; now want him to be independent, confident, adapted, okay CDHA - pt goes home satisfied with care; bed is freed up; no litigation; reputation intact or better Society - services available to those who need them (most); equitable, timely access; appropriate care; efficient, effective, responsible use of resources Second order construct - not directly observable; indirectly via actions, behaviour, speechPt - improved fcn; return to pre-injury level; independence HCP - these have changes, I.e., hoped pt would engage with program; now want him to be independent, confident, adapted, okay CDHA - pt goes home satisfied with care; bed is freed up; no litigation; reputation intact or better Society - services available to those who need them (most); equitable, timely access; appropriate care; efficient, effective, responsible use of resources Second order construct - not directly observable; indirectly via actions, behaviour, speech

11. 8/23/2012 11 Ethics Ethics is basically about the ways we do, & should, treat each other. Ethics involves a systematic investigation of our values & actions. Context - health/care - care interactions re: health medicine - physiology/�disease�/cure focus dominates recent more holistic focus - expanded psychosocial-spiritual/ �illness�/care focus, �respect for persons� perspective, more pt/fam-centred �hope� messages - implicit, part of it - obligation to promote (encourage, nurture) hope in pts �Hope is the physician of every misery� (Irish Proverb) rooted in benevolence, non-maleficence as well �Ethical theory, as opposed to morality, is the systematic, critical study of the basic underlying principles, values, and concepts utilized in thinking about the moral life.� (p.4; Thomas & Waluchow; Well and Good: a case study approach to biomedical ethics. 1998, Broadview Press:Peterborough, ON) Psychosocial/spiritual aspects - currently de rigeur; psrt of whole person care and patient-centred care; major focus in PC; points to an assumption about the moral importance of attending to emotions (pt�s for sure; what about HCP�s?) Goals of medicine: rooted in principle of benevolence; nowadays autonomy has become dominant in NA; culture of individualism The profession of medicine articulates four goals: prevention of disease and injury, and promotion and maintenance of health relief of pain and suffering caused by maladies care and cure of those with a malady, and the care of those who cannot be cured avoidance of premature death, and the pursuit of a peaceful death Obligation to promote hope, like obligations to protect confidentiality, and respect informed choice Lots of literature out there suggesting HCPs obligation to give, support, increase, find, promote pt�s hope; manage, eliminate, reframe false hopes�Ethical theory, as opposed to morality, is the systematic, critical study of the basic underlying principles, values, and concepts utilized in thinking about the moral life.� (p.4; Thomas & Waluchow; Well and Good: a case study approach to biomedical ethics. 1998, Broadview Press:Peterborough, ON) Psychosocial/spiritual aspects - currently de rigeur; psrt of whole person care and patient-centred care; major focus in PC; points to an assumption about the moral importance of attending to emotions (pt�s for sure; what about HCP�s?) Goals of medicine: rooted in principle of benevolence; nowadays autonomy has become dominant in NA; culture of individualism The profession of medicine articulates four goals: prevention of disease and injury, and promotion and maintenance of health relief of pain and suffering caused by maladies care and cure of those with a malady, and the care of those who cannot be cured avoidance of premature death, and the pursuit of a peaceful death Obligation to promote hope, like obligations to protect confidentiality, and respect informed choice Lots of literature out there suggesting HCPs obligation to give, support, increase, find, promote pt�s hope; manage, eliminate, reframe false hopes

12. 8/23/2012 12 Ethics & Bioethics Values beliefs that cannot be demonstrated to be correct or incorrect by reference to evidence or set of facts and which provide essential guidance for actions Values Conflicts Given the nature of values, it is inevitable that they will come into conflict Ethics Goal of ethics is good decision-making - our commitment to struggle with values conflict and values uncertainty in an effort to make good decisions (how do we understand �good� in this context�?) Decision-making: what should we tell the pt & why; should family be included; how to accomplish the D/C plan; what if he refuses to leave? Plan of care: �reasonable� D/C plan, desire to maximize positive gains for the pt, satisfaction, minimize liability Values: affect perspective for decision-making and care; issues like truth-telling,reasonableness, truth, hope, communication Communication: how should we tell the pt; what needs to be included; who should be present; who should lead? Four principles and related values: respect for autonomy [value = self-determination, respect; pt�s best interests] benevolence [value = service; cure & care] - goals of medicine non-maleficence [value = do no harm] justice [value = fairness; equity of service]Decision-making: what should we tell the pt & why; should family be included; how to accomplish the D/C plan; what if he refuses to leave? Plan of care: �reasonable� D/C plan, desire to maximize positive gains for the pt, satisfaction, minimize liability Values: affect perspective for decision-making and care; issues like truth-telling,reasonableness, truth, hope, communication Communication: how should we tell the pt; what needs to be included; who should be present; who should lead? Four principles and related values: respect for autonomy [value = self-determination, respect; pt�s best interests] benevolence [value = service; cure & care] - goals of medicine non-maleficence [value = do no harm] justice [value = fairness; equity of service]

13. 8/23/2012 13 Ethics & Bioethics Decision-making - many different ethics frameworks to guide deliberations Decision-making in HC - 4-principle bioethics framework: respect for autonomy value = self-determination, respect; pt�s best interests benevolence value = service; cure & care - goals of medicine non-maleficence value = do no harm justice value = fairness; equity of service

14. 8/23/2012 14 Bioethics & Hope Respect for autonomy - informed choice attention to 5 elements: Capacity Disclosure - Dx, Px, Rx options, risks v. benefits, rec�s Understanding Voluntariness Authorization Hope: a factor in disclosure aka �truth-telling� pt�s choice - offering truth (Freedman, 1993) what is heard, how it is interpreted HCP�s choice - what, when, how, to whom Concerned with: decision-making, including EOL, weighing risks & benefits in personal context Right to be free of manipulation, coercion, or deception -honest, candid, non-dissembling, respectful - TRUTH-TELLING; process of sharing info as much as content impacts what the patient takes away from the encounter often slant into in particular ways to influence decision outcome; omit particular details [cancer as remote possibility in a differential Dx so pt not unduly alarmed] soft-peddle or misrepresent details to decrease weight put on them [label it an allergic reaction to a drug rather than a mistake in dosing order] understanding as a separate element of informed choice - use language patient can understand; phrasing can impact understanding, I.e., use cancer word, can cause shock and nothing else heard HCP�s choices: concern re: effect on pt�s hope; own hopes for pt (Rx plans, likelihood of cure, etc.) may influence what info is included, how it is shared, time allowed,venue, individuals present, & nature of the process Hope (their own + pt�s) impacts content and process chosen by HCP� for delivery of info to pts Hope (desires, values, imagination, fear, uncertainty, vulnerability) impacts what and how pts hear, understand, & remember info HCP�s deliver Hope - if worried about cancer [hoping it isn�t], nothing else is heard or else it is interpreted within the cancer framework until this is broached directly by the HCP False hope - hoping for cure, told only 10% chance of 5-yr survival will tend to put self in the 10% category Characterization of hope by HCPs: true v. false; lack awareness re: own hopes; arrogance re: effects on pts hope; ignorance re: nature of pt�s hopesConcerned with: decision-making, including EOL, weighing risks & benefits in personal context Right to be free of manipulation, coercion, or deception -honest, candid, non-dissembling, respectful - TRUTH-TELLING; process of sharing info as much as content impacts what the patient takes away from the encounter often slant into in particular ways to influence decision outcome; omit particular details [cancer as remote possibility in a differential Dx so pt not unduly alarmed] soft-peddle or misrepresent details to decrease weight put on them [label it an allergic reaction to a drug rather than a mistake in dosing order] understanding as a separate element of informed choice - use language patient can understand; phrasing can impact understanding, I.e., use cancer word, can cause shock and nothing else heard HCP�s choices: concern re: effect on pt�s hope; own hopes for pt (Rx plans, likelihood of cure, etc.) may influence what info is included, how it is shared, time allowed,venue, individuals present, & nature of the process Hope (their own + pt�s) impacts content and process chosen by HCP� for delivery of info to pts Hope (desires, values, imagination, fear, uncertainty, vulnerability) impacts what and how pts hear, understand, & remember info HCP�s deliver Hope - if worried about cancer [hoping it isn�t], nothing else is heard or else it is interpreted within the cancer framework until this is broached directly by the HCP False hope - hoping for cure, told only 10% chance of 5-yr survival will tend to put self in the 10% category Characterization of hope by HCPs: true v. false; lack awareness re: own hopes; arrogance re: effects on pts hope; ignorance re: nature of pt�s hopes

15. 8/23/2012 15 Disclosure & Hope �We ridicule those with too much hope and hospitalize those with too little.� (Rona Jevne) HCPs tend to see pts� hope(s) as real or �false� ie., good or bad power differential - �expertise� & certainty pressure for �truth-telling� & more info - lessen uncertainty �The contention that hope is a product of the perception of the individual indicates that the use of the same set of facts to calculate probabilities will result in varying degrees of hopefulness or hopelessness among different persons encountering similar circumstances.� (McGee, 1984) Case 1: pt hoping for more recovery; sees staying on hospital rehab service as most likely way to accomplish this; family also hoping for this, not ready to have pt home in current state; sees hospital as appropriate place for pt to be cared for HCPs: view this attitude as unrealistic at this point, clinging to rehab has become a kind of �false� hope; how realistic are HCP�s hopes at this point (that pt will accept his situation and go home happily, peacefully, quietly buying into the need to work at it on his own) What is/are the source(s) of this/these false hope(s)? Pt�s own desires to be better; also �hope� work of rehab (implicit [and explicit] meta-narrative); discomfort with emotions at the heart of pt�s losses and our inability to �fix� them; system and societal pressures to free up beds �Hope� work - underlying story on rehab (Mattingly) is one of recovery of fcn and independence - route to encouraging pts to engage with their programs (pain, difficult, frustrating) - now suddenly want pts to switch and believe this is no longer so, that home is equally valuable spot to continue this progress. Is calling his view �false� hope a way to protect us from having to deal with the inherently emotional content of all of this? HCPs� first response: tell him the truth regarding his hopes, I.e., correct his false hopes for further progression either in rehab or out of it; batter him with �truth�Case 1: pt hoping for more recovery; sees staying on hospital rehab service as most likely way to accomplish this; family also hoping for this, not ready to have pt home in current state; sees hospital as appropriate place for pt to be cared for HCPs: view this attitude as unrealistic at this point, clinging to rehab has become a kind of �false� hope; how realistic are HCP�s hopes at this point (that pt will accept his situation and go home happily, peacefully, quietly buying into the need to work at it on his own) What is/are the source(s) of this/these false hope(s)? Pt�s own desires to be better; also �hope� work of rehab (implicit [and explicit] meta-narrative); discomfort with emotions at the heart of pt�s losses and our inability to �fix� them; system and societal pressures to free up beds �Hope� work - underlying story on rehab (Mattingly) is one of recovery of fcn and independence - route to encouraging pts to engage with their programs (pain, difficult, frustrating) - now suddenly want pts to switch and believe this is no longer so, that home is equally valuable spot to continue this progress. Is calling his view �false� hope a way to protect us from having to deal with the inherently emotional content of all of this? HCPs� first response: tell him the truth regarding his hopes, I.e., correct his false hopes for further progression either in rehab or out of it; batter him with �truth�

16. 8/23/2012 16 �False� Hope 4 common assumptions: �false� hopes exist �false� hopes can be reliably identified �false� hopes are, or create, a problem �false� hopes should be changed, eliminated, or avoided - role for �truth-telling� vulnerability �I have spread my dreams under your feet, Tread softly because you tread on my dreams� (WB Yeats) fluctuation self-reflection alternative terms: contested/uncontested; shared/not shared 1 & 2 together: who decides whether a hope is false and on what grounds? - usually connected to status & power, I.e., team/HCP perspective; pt rarely comments on HCP�s hope(s)!! - says as much about judger�s perspective and hopes as about those of the one whose hope is being judged consider context and person relativity of hope - subjectiveness; what is the evidence for legitimacy or reasonableness, I.e., 10% survival rate implies that 10 out of 100 pts with this Dx and Rx will survive that long--why shouldn�t this pt be one of the 10? Consider it in terms of hope falling along spectrum from 0 - 1: where along that line does the chance have to fall for it to be considered nil (and therefore an allied hope to be unreasonable)? Difference between probability and possibility�same set of facts interpreted differently by different individuals (like an eye-witness account) - HCP�s use probability perspective; pts use possibility Other options for labelling these hopes: contested v. uncontested (more than one way to see it); shared v. unshared (not often talked about, many never come up); remember there are many other hopes going on at the same time within each indiv, not all will be contested and may form the basis of relationship and hope obligation Assumption 3: problems for whom? (HCPs) why? (feel badly when hope is disappointed) so usually due to concern for pt & fam; don�t assume �false� hope - assume need to make opportunities to talk and explore nature/meaning of these hopes; obviously need to protext pt whose hopes leave them vulnerable to manipulation (by charlatans, etc.) ��we may also need to recognize that we may be protecting ourselves. We don�t know what to say or do if the hope is not fulfilled. If we allow ourselves to think there is a window of possibility, when it is closed, we too are hurt.� (Jevne, 1996) Assumption 4: is this the best approach? Usually done via more info, stressing �truth� or �reality� from HCPs� perspective; pt feels beaten with facts; hope helps pt keep living, I.e., future oriented and present anchored1 & 2 together: who decides whether a hope is false and on what grounds? - usually connected to status & power, I.e., team/HCP perspective; pt rarely comments on HCP�s hope(s)!! - says as much about judger�s perspective and hopes as about those of the one whose hope is being judged consider context and person relativity of hope - subjectiveness; what is the evidence for legitimacy or reasonableness, I.e., 10% survival rate implies that 10 out of 100 pts with this Dx and Rx will survive that long--why shouldn�t this pt be one of the 10? Consider it in terms of hope falling along spectrum from 0 - 1: where along that line does the chance have to fall for it to be considered nil (and therefore an allied hope to be unreasonable)? Difference between probability and possibility�same set of facts interpreted differently by different individuals (like an eye-witness account) - HCP�s use probability perspective; pts use possibility Other options for labelling these hopes: contested v. uncontested (more than one way to see it); shared v. unshared (not often talked about, many never come up); remember there are many other hopes going on at the same time within each indiv, not all will be contested and may form the basis of relationship and hope obligation Assumption 3: problems for whom? (HCPs) why? (feel badly when hope is disappointed) so usually due to concern for pt & fam; don�t assume �false� hope - assume need to make opportunities to talk and explore nature/meaning of these hopes; obviously need to protext pt whose hopes leave them vulnerable to manipulation (by charlatans, etc.) ��we may also need to recognize that we may be protecting ourselves. We don�t know what to say or do if the hope is not fulfilled. If we allow ourselves to think there is a window of possibility, when it is closed, we too are hurt.� (Jevne, 1996) Assumption 4: is this the best approach? Usually done via more info, stressing �truth� or �reality� from HCPs� perspective; pt feels beaten with facts; hope helps pt keep living, I.e., future oriented and present anchored

17. 8/23/2012 17 Further considerations What about my hope(s)? Do we have to share same hope to give good care? Do we make space for differing hopes? If I don�t challenge, am I endorsing the pt�s hope? Opportunities for discussion & exploration Meaning contexts - religious, spiritual, cultural Finding common ground What about disclosure & my commitment to honesty? Content & process �while the truth may be brutal, telling it does not have to be� Vulnerability: part of hope, imagination, uncertainty; hopes imply reciprocal fears; tread softly Fluctuation: allow time for natural readjustment of hope (resilience); attend to questions and other opportunities that present themselves as a chance to explore pt�s hopes and meaning of them to that individual Self-reflection: why do I want/need to intervene? What do I want to achieve? Vulnerability: part of hope, imagination, uncertainty; hopes imply reciprocal fears; tread softly Fluctuation: allow time for natural readjustment of hope (resilience); attend to questions and other opportunities that present themselves as a chance to explore pt�s hopes and meaning of them to that individual Self-reflection: why do I want/need to intervene? What do I want to achieve?

18. 8/23/2012 18 Hope & Care How might we go about addressing hope(s)? �Hope for the best, prepare for the worst� (Back & Quill, 2003) Be curious, ask about it, listen Seek the meaning for the pt/family Be conscious of cultural nuances Goal: respectful pt-centred �caring� Decision-making according to pt-defined needs An �ethic of care� lens (Tronto, 1993) - 4 phases, 4 moral elements Phase 1: caring about - moral element: attentiveness Phase 2: taking care of - moral element: responsibility Phase 3: care-giving - moral element: competence Phase 4: care-receiving - moral element: responsiveness Hope for the best (Back & Quill, 2004) - doesn�t work for everyone; be sensitive, there is no one size fits all; loss of individualism is significant source of suffering (A. Frank, Can we reserch suffering?) Curisoity & listening: actively listen for clues and cues - opportunities to explore further Meaning: something to hang onto; belief system, assumptive world, disrupted by catastrophe (illness, uncertainty, relation to faith); existential or spiritual crisis indicates a need for referral Ethic of care: complex, requires certain moral qualities (character/attitude); involves both particular acts of caring as well as a general �habit of mind� to care that should inform all aspects of a practitioner�s [moral] life [are there any aspects of life that are lie outside a consideration of morality?] 4 phases or elements of �care� - caring about, taking care of, care-giving, care-receiving; 4 ethical elements of �care� - attentiveness, responsibility, competence, responsiveness �The kind of metaethical theory that we find convincing reveals a great deal about who we are, what moral problems we think are significant, and how we view the world� (Tronto, p149) ��the hegemony of Neo-Kantian ethics has been challenged by moral theories that rely upon compassion, care, the emotions, and to some extent, communication� (ibid)Hope for the best (Back & Quill, 2004) - doesn�t work for everyone; be sensitive, there is no one size fits all; loss of individualism is significant source of suffering (A. Frank, Can we reserch suffering?) Curisoity & listening: actively listen for clues and cues - opportunities to explore further Meaning: something to hang onto; belief system, assumptive world, disrupted by catastrophe (illness, uncertainty, relation to faith); existential or spiritual crisis indicates a need for referral Ethic of care: complex, requires certain moral qualities (character/attitude); involves both particular acts of caring as well as a general �habit of mind� to care that should inform all aspects of a practitioner�s [moral] life [are there any aspects of life that are lie outside a consideration of morality?] 4 phases or elements of �care� - caring about, taking care of, care-giving, care-receiving; 4 ethical elements of �care� - attentiveness, responsibility, competence, responsiveness �The kind of metaethical theory that we find convincing reveals a great deal about who we are, what moral problems we think are significant, and how we view the world� (Tronto, p149) ��the hegemony of Neo-Kantian ethics has been challenged by moral theories that rely upon compassion, care, the emotions, and to some extent, communication� (ibid)

19. 8/23/2012 19 III: Application What about hope in other contexts, e.g., chronic illness? 3 trajectories (Lynn, 2005) Trajectory 2: advanced COPD woman late 50�s, angry, labeled �non-compliant� elderly male needing �everything done� woman mid-60�s, dies - daughter�s shock Hope(s) issues�?

20. 8/23/2012 20 Advanced COPD COPD (chronic obstructive pulmonary disease) prevalent, chronic, progressive, terminal illness uncertainty due to unpredictable trajectory significant physical, psychosocial, and spiritual care needs hope & info important factors in coping According to pts/families, COPD care lacks: continuity comprehensiveness relevance

21. 8/23/2012 21 Hope in COPD� Reality: living in shadow of death (Bailey, 2001) - Isolation Dependency Stigma Co-morbidity Symptom burden > end-stage lung Ca - no PC Fear: abandonment, being a burden, not having enough info, what death may be like Looking at the COPD cases: HCPs� hope v. pt�s hope�?

22. 8/23/2012 22 Hope & COPD cont�d Ethic of care � care begins with pt; personal, subjective, contextual, responsive Gaps in COPD: care begins & ends with HCP & institution Relational - nature of hope Isolation the norm in COPD Agency - aspect of hope Loss of independence natural course in COPD Imagination - part of hope Uncertainty in COPD � illness-related, personal & contextual, decline is only certainty, source of + difficulty/hope/coping Problematic Integration Theory (Babrow, 2001) uncertainty may be helpful in some ways, not in others

23. 8/23/2012 23 IV: Integration Thinking about your related experiences: What hope(s) was/were part of the situation? What was your role in this situation - as a HCP? As a person? Whose interests/needs were central? Should this change? What was important about what was going on? For whom? What was at issue? Whose issue was it? How did you handle it & would you do it differently now? How and why? Are there other resources that might be helpful? Any other considerations you can think of?

24. 8/23/2012 24 V: Conclusions Summarizing: Hope is a component of the moral core at the heart of all HC encounters Awareness of & appropriate attention to participants� hope(s) is an important part of ethical decision-making & effective Rx relationships Hope-sensitive communication builds trust & effective Rx relationships, facilitating the planning & delivery of patient-centred care consistent with respect for persons Respect for persons is at the heart of ethically sound professional practice in HC

25. 8/23/2012 25 Food for thought� What assumptions do I make about patients� hope(s)? �Difficult� pts? Non-compliant pts? What hopes do I bring to my encounters with patients & families? With colleagues? What about the team dynamic�are we aware of one another�s hope(s)? Does this matter? What effect does hope have on stress levels?

26. 8/23/2012 26 Pulling us over the horizon� Hope is where the heart is� �The best and most beautiful things in the world cannot be seen, nor touched, but are felt in the heart.� (Helen Keller)

27. 8/23/2012 27 My appreciation to� The patients and their families who have taught me so much�also, Dr. Christy Simpson, Assistant Professor, Dept. Bioethics, Dalhousie University, Halifax, NS, Canada, & NSHEN Rev. Dr. Jody Clarke, Professor of Pastoral Theology, Atlantic School of Theology, Halifax, NS, Canada Dr. Deborah McLeod, Psychosocial Oncology Clinician, Cancer Care NS & Dalhousie University School of Nursing, Halifax, NS, Canada Dr. Graeme Rocker, Chair, Division of Respirology, QEII Health Sciences Centre, CDHA, Halifax, NS, Canada