Informed Consent Disclosure Moral Residue, Moral Distress and the Hope of Moral Dialogue: I ask a lot of hard, unusual questions that can’t be answered easily. Then time is up Navigating Competing Demands in and I leave. Public Health Some questions may challenge your q y g y beliefs or expectations. Laura Shanner, Ph.D. Doing ethics work can give you a School of Public Health and headache. (Sorry!) John Dossetor Health Ethics Centre University of Alberta I find it challenging, too -- but the view March 18, 2011 gets more spectacular the further you go. Think of me as your Sherpa on this journey… 2 Moral Moral Residue v. Distress Goals for Today Possible remedy: Impossible choice: Moral Residue: Dilemmas and things we can’t Systemic or individual Ethical Dilemma blockers change – Health needs, vulnerabilities, economics Can’t do it all Can’t do core job Moral Distress: What we should change Moral Distress: What we should change Heaviness: Jangled: anger, – Bureaucracy, incompetence, politics, personalities, frustration > grief, sorrow > poor planning depression exhaustion Moral Dialogue: Aiming higher Doubt: Did I make Feel like failure: – Open moral space, deliberative dialogue the right choice? Why am I here? – Challenging unrealistic assumptions Affects all levels Worse @ lower – Getting PH higher on the agenda levels 3 4 Do as I say, not as I do… Moral Residue Lord, Grant me the serenity to accept the things I cannot change, The courage to change the things I Things we can’t change can, And the wisdom to know the difference. The Prayer of St. Francis 5 1
Values in Health Care, Dilemmas vs. Disagreements Research & Policy Ethical Dilemma Outcomes (harms and benefits) • – Important moral reasons in favor of Respect for Persons incompatible options • Justice – Every option sacrifices important moral y p p • consideration Relationships • – “Damned if you do, damned if you don’t” Community • Disagreement Honesty • Trust – More info might resolve • Profound meanings of birth, death, – Definitions or assumptions differ • embodiment, hope, loss, etc. – Preferences 7 8 Source of Dilemma: 3 Health Program Models HC demands are INFINITE Equal access We are mortal – Appeals to innate sense of fairness – Every time we are saved, something else will threaten us – May waste resources where not needed If not terminal, we seek improved QOL Greatest need Greatest need – Pain, impairment, life preferences P i i i lif f – Appeals to compassion If not struggling, seek improvement – May waste resources in cases “too far – Cosmetic, performance enhancement gone” Prevention of “not-yet-problems” Utility: greatest good The laws of supply and demand do not apply to – Least waste of resources – May abandon some in need health services - supply can never meet demand 9 10 The Vicious Triangle Renovation Dilemmas: A bigger budget won’t help! You can have 1 or 2, but not all 3 Cost Equal Access Quality Time Utility Need 11 12 2
“Harsh Reality of Humanitarian MSF Justification: Utility Aid” – Dispatches MSF Canada Newsletter 9(2) 2007 “In the mid-1990’s in Sudan, there was yet “The security of our project locations another outbreak of the deadly disease and our capacity to deliver quality kala azar…. care guided our thinking. We g g Our MSF team struggled to respond, Our MSF team struggled to respond decided to treat patients in locations hampered by the war and a worldwide shortage of the drug needed…. where we were most assured of We had to decide which populations would successfully finishing the treatment receive life saving drugs and which would and saving the lives of the sick.” not. We had to decide who would live and who would die.” 13 14 MSF: Moral residue MSF 2: Moving on “How could we think of leaving when “As logical as this seemed, it meant people like Nyanut needed care?… The cutting off a group of people in one of question weighed heavily on us… the most devastated areas…People p [In this village] there is a 2 nd hospital 20 d already on treatment were given the km away, a Sudanese doctor on location, possibility of completing it. But we and at least 3 other NGOs providing were forced to abandon others…” health services in the area…But only about 25% of people in southern Sudan have access to even the most basic level of health care… 15 16 How to live with Moral Residue MSF Justification: Need “ We believe it is our responsibility to plan Mutual support for decision-making and an exit strategy and reallocate our aftermath limited resources to situations where Accept that life is complicated other organisations can’t or won’t g – perfect answers (or people) are rare perfect answers (or people) are rare work… – “ethics as tragedy” The impossible choices we make Thoughtful justification led to choice ultimately take us beyond the small – What have we learned? How can we improve? pockets where some level of health care Core values promoted is available, to places where other young – compassion, health, fairness, respect, etc. You can’t do more than your best girls like Nyanut have no access to care at all.” 17 18 3
Moral Distress Moral Distress We all know what needs to be done, but barriers prevent doing it – No fundamental dilemma No fundamental dilemma – Core duties neglected, values sacrificed Things have GOT to change! Decisions at higher levels of authority typically involved – Helplessness, pressure to perform anyway None of “vicious triangle” maximized 20 Causes of Moral Distress Poor planning Moral Dialogue – “Penny wise, pound foolish” – Constant change – Lack of vision, imagination L k f i i i i i Working toward change Incompetence: Peter Principle Imagine the possibilities! Bureaucracy Politics v. Governance, leadership Unethical behavior by other(s) 21 An Open Moral Space (M.U. Walker) Deliberative Dialogue Reflective atmosphere – Time needed Identify, reflect on one’s own assumptions – Narratives, negotiation, exploration Ask, explore whether assumptions are shared Non-judgmental, exploring Really listen, engage others – Process more than content Consider pros of other views, limitations of own Social situating: context, problems, participants Work toward shared understandings ‘Systematic’ = rational, justified, not spurious Not a debate: no attempt to ‘win’ – Not engineering, rule-book Ethicist as facilitator, mediator, architect – Not moral virtuoso, dictator, expert 23 24 4
Handling Bullies: Navigating Fear 1st Order Thinking Recognize, validate and demonstrate compassion for the fear under the Assumptions Conclusions Problems ideology, behavior Ideal: Create safe environment to Id l C f i confront realities, vulnerabilities, assumptions Explore what they need, seek options Same Same Same old When all else fails: Speak their Assumptions conclusions Problems language, sidestep the fear 25 26 2nd Order Thinking Assumptions to Challenge More $ will fix it Challenge Better Immortality possible New Options Assumptions Outcomes Bad things don’t happen to good people people 4 Fate determines what happens – “No such thing as an ‘accident’” 1 2 3 Technology = Progress – ‘Progress’ = We know where we want to go and this development brings us closer – Change: Might be better, worse, or just 27 28 different What do we really WANT & NEED? Logical Hurdles for PH Primary v. Secondary Goods (Rawls) – Primary: needed to do all else Prevention isn’t visible • Nutrition, health, education, shelter - Rescue of victim is dramatic – Secondary: life plans • Work, family, activities, experiences Can t prove a counter-factual Can’t prove a counter-factual Quality of Life Compassion needs a subject – What kind of life do you want to live? – What kind of community do you want to live in? - “public” isn’t a face like individual – What do you want to leave for future generations? Crisis – I do want rescue, but prefer no crisis at all – Support to get through hard situations 29 30 5
Thanks for your great work, and A different vision… Enjoy your day! We are Temporarily Able-Bodied – Vulnerable physically, cognitively, emotionally, socially, etc. We are mortal We hate these facts – Most people fear one more than other: either being dead or what they would suffer along the way How can we help each other navigate our shared fears and vulnerabilities? 31 Charlie, the Bioethics Mascot 32 6
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