Ethics in ACT Ethics in Action Ethics in Traction John Maher MA MD FRCPC Today’s topics: Our ACT world Compassion fatigue & moral stress Ethics in psychiatry Weaving a value tapestry A penny for your thoughts Take one for the team How are ACT teams different from other community treatment teams? community based in-vivo interventions the ability to provide rapid and intensive responses long-term and full clinical responsibility for individuals with serious and persistent mental illness. multidisciplinary teams working as teams low staff: client ratios (often 1: 8) providing flexible, all inclusive care often a program of last resort—the alternative is frequent or permanent hospitalization “doers not brokers” better outcomes (Szmukler G, 2003) Why are ACT teams a hot bed for the generation of ethical issues? “Familiarity begets certain liberties” small staff-client ratios (intimate knowledge of client’s life story) intensity of involvement infiltration into all aspects of client’s life engagement in activities usually limited to friends or family severity of client’s illness (impaired insight and capacity is common) ACT teams intervene directly, repeatedly “Staff are busy trying to prevent mayhem…the constraints of confidentiality, voluntariness, and other moral requirements whose application to the community treatment context is unclear often seem to be issues of bureaucratic nicety.” (Diamond & Wikler 1985) When confronted by the chaos of a tense clinical situation some staff respond with greater control and paternalism that then perdures in order to prevent things getting out of control again. All of the above leads to more ethical confrontation and conflicts with and between personal and team philosophies. Clients often welcome help with their social needs (e.g. housing, finances) but ACT engagement and treatment plans inexorably foist medical and safety interventions upon them too. Even with verbal abuse of ACT staff we still don’t stop seeing our clients. And we keep showing up even when repeatedly fired. (Non-psychotic physical violence, or genuine threats of violence are, however, appropriate grounds for discontinuing care.) “Is treatment that won’t go away ethical?” (Stovall, 2001) What makes ACT successful? (And from whose perspective?) Objectively the endpoints are clearly good: – better health, – better relationships, – better housing, – better food,.. – fewer hospitalizations Subjectively, for some, the means are clearly bad: – forced medication adherence, – threats of hospitalization, – loss of freedom, – living in a world where strangers keep telling you that you have an illness… Our ACT World Nice rug Nice couch Breathe through your mouth Last meal Lying, drug seeking, anger, rejection, danger Intruder, psychiatric police Compassionate advocate Compassion What is compassion? Pity coupled with an urgent desire to aid or spare someone their suffering What are the elements of compassion? 1) Pity: tender or contemptuous sorrow for one in misery or distress (note the moral element) Compassion 2) Empathy: the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another of either the past or present without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner Compassion 3) Sympathy: the act or capacity for sharing the painful feelings of another 4) Commiseration: pity expressed outwardly in exclamations, tears, or words of comfort Biology of affect: mirror neurons Cognition: this could happen to me Unconscious association: this has happened or will happen to me Compassion Fatigue Compassion Fatigue: the not inevitable cost of caring… Emotional exhaustion Physical exhaustion Vicarious trauma Compassion Fatigue Compassion Fatigue: May be more likely to occur in caregivers who have had difficult childhoods, and/or have ongoing difficult emotional challenges in their personal lives Compassion Fatigue & Moral Stress It has been suggested that a significant contributing factor to compassion fatigue is moral stress Moral stress: caused by repeated exposure to moral challenges or conflicts in which the path is not clear, or… Compassion Fatigue & Moral Stress …repeatedly finding oneself in circumstances in which you are thwarted in your efforts to do what you believe is right…”no-win situations” Uncertainty and frustration engendered by barriers to good care… Sound familiar? Compassion Fatigue & Moral Stress ACT staff show compassion for marginalized, stigmatized, impoverished, suffering individuals We constantly fight systems: lack of money, lack of housing, ignorance, medical neglect, unemployment, overt abuse Others don’t do what we know to be right and fair for our clients… Compassion Fatigue & Moral Stress And our clients often don’t do what we know to be good for them… As intensive case workers in the community we enter into the lives of our clients in ways few other caregivers do… When people we really care about are hurt we may feel it deeply… And the usual recurrent injustices of the world may be harder to shake off… Compassion Fatigue & Moral Stress ACT was founded on the premise of ensuring patients’ autonomy without abandoning them in the community… But this is an unsupportable contradiction for front-line staff who are busy “massively controlling their clients, supposedly to guarantee that clients control their own lives.” (Brodwin 2008) This is an ever present moral tension… Compassion Fatigue & Moral Stress “Front-line staff find that the same clinical gestures required, per ACT guidelines, to prevent hospitalization (the prime clinical and ethical ideal) can also decrease clients’ independence, threaten their wellbeing, and humiliate them in public.” It is a double bind… Compassion Fatigue & Moral Stress So what do we do with moral stress in order to stave off compassion fatigue? 1) Emotional awareness skills 2) Recognize early warning signs (anger, impatience, heightened sense of injustice, not being able to let go when you are at home) Compassion Fatigue & Moral Stress 3) Stress management techniques and self-care strategies that promote optimism, happiness, and positive attitudes 4) Discuss issues with colleagues (team meetings that allow this are really important) 5) Debrief with a supervisor Compassion Fatigue & Moral Stress 6) Systems mastery (using connections) 7) Foster effective functional detachment through recognition that moral conflicts in life are inevitable, and they leave us with residual anxiety, guilt, and distress (“moral residue”) 8) Use moral discourse to mollify or mediate intense affective distress. Compassion Fatigue & Moral Stress Key idea: Suffering and sadness coexist with joy, discovery, and hope. Fight the good fight without resignation, and do not despair, for what meaning there is in life cannot be smothered solely by its passing injustices Morality vs Ethics Morality and ethics are tools in the fight… Morality: right vs wrong (conscience, intuition, personal values, emotion) Ethics: reflection that is based on the human capacity for reasoning and gets expressed through formal systematic theory Ethics Theories Used in Psychiatry 1) professional ethics (e.g. duty to society vs duty to patient) 2) virtue ethics (ethics of care): desirable qualities in an ethical agent 3) Principle-based ethics (autonomy, beneficence, nonmaleficence, distributive justice, etc) Ethics Theories Used in Psychiatry 4) Casuistry: paradigm cases as precedents (e.g. Tarasoff) 5) Utilitarianism (greatest good for…) 6) Deontological (universally true for all time) Ethics Theories Used in Psychiatry 7) Discourse ethics (post-modernist, feminist): ethical norms are generated through discourse within a context in which all members can express their views (I believe such discourse inevitably involves appeal to, or non-explicit use of, the previous 6 theories) My Inner Moral World… What guides your thinking? What drives your heart? Playground rules: “That’s not fair!” Do unto others… The Rawlsian Veil of Ignorance… (a technique for weighing distributive justice) Ethics in Psychiatry It is argued that no one theory is adequate for the complexities of psychiatric practice Why? Unique vulnerability of mental health clients, unique power relationships, unique relationship of psychiatry to the law and social institutions Ethics in Psychiatry Psychiatry is a socially constructed enterprise, continually evolving… Nazi psychiatrists to REBs… Codes of ethics (e.g. ati diki) Disease classification (DSM V) Treatments (analysis, DBS) Neuroscience (do we have free will?) What counts as normal? (neurodiversity movement) Ethics in Psychiatry The Goal: “To achieve a balance between universal human values and the particularism of different psychiatrists working in different societies at different points in history…” (Brodwin 2008) How do we do this? Moral Discourse “The Coproduction of Moral Discourse in U.S. Community Psychiatry” A two year ethnographic study of ACT (ethnography: the study and systematic recording of human cultures) Paul Brodwin, anthropologist, University of Wisconsin Medical Anthropology Quarterly V.22, Issue 2, 2008 Bioethics – A Critique For 20 years, social scientists have critiqued formal bioethics. In the real world, we don’t have rational and systematic deliberation in response to moral uncertainty. Reality is messy… They say ethical issues in medical care are not addressed by “invoking abstract principles and values (autonomy, utility, care,etc.) but rather through local idioms and reflections on their immediate, practical activities” Bioethics – A Critique “ According to this critique, people’s moral perspective on medical treatment emerges from the concrete details of inequality and local notions of suffering, not highorder virtues or rules of conduct.” Bioethics – A Critique “Emotional experience and local institutional arrangements drive many of the social conflicts that later get formally labeled as bioethics disputes.” (italics and underlining are mine) Bioethics – A Critique “Ethical discussions by both staff and patients are thus inseparable from their immediate life circumstances, social roles, political interests, and cultural beliefs.” This critique has intuitive appeal. Bioethics is an abstract bunch of theoretical stuff that doesn’t really have primacy in the real clinical world… Bioethics – A Critique This critique lead to the following categorical distinction and lingo: “Moral discourse” is the framework used by ordinary front-line practitioners as they handle particular illness episodes “Ethics” is the codified, reflective language of elite experts, situated far from the scene of clinical action Bioethics – A Critique If moral discourse and ethics are really two separate worlds of thought, then what does that mean for clinical bioethicists who provide moral advice and adjudicate disputes in hospitals? “Clinical bioethicists depend on their specialized theoretical knowledge to legitimize their professional identity.” “They promise clarity, rigor, and coherence, even if (indeed, precisely because) they obscure the local texture and richness of moral life.“ Bioethics – A Critique “The social power of clinical bioethicists – the likelihood that others will follow their advice – depends on their cultural authority, their ability to establish convincing definitions of fact and value. This is a tight power/knowledge link…” Bioethics – A Critique But “ethical decision making in health care is a culturally embedded process, attuned to people’s life experiences and shifting over time. It thus cannot possibly conform to the dictates of prescriptive theory.” (theory that shows what one ought to do) The Conundrum So bioethicists are useless? So ethics is remote and irrelevant to front line workers? So moral discourse at the front-line always has analytic primacy and is useful simply because bioethics is not? A Middle Road: Coproduction of Moral discourse Brodwin argues that “moral discourse is coproduced by formal bioethics, on the one hand, and the circumstances of everyday clinical practice, on the other hand.” What does this mean? It is like a pentimento… Coproduction of Moral Discourse Pentimento: a reappearance in a painting of a design which has been painted over The tools at hand to solve clinical dilemmas were “created in part by prior ethical decisions made by other actors, responding to different circumstances and demands at an earlier historical period.” The “outcome of prior ethical debates is woven into the terms and tools used by today’s clinicians.” Coproduction of Moral Discourse “Over time, bioethics decisions (systematic, explicit, and made by experts) become sedimented into the very conditions of work for front-line practitioners. They help create the roles that clinicians play, the guidelines and goals for intervention with patients, and their moral perspective on every day work.” Coproduction of Moral Discourse In short, ethics matters and moral discourse matters, and neither can flourish without the other. Teeth need something to chew on… Mental health reform is driven by front-line conflict and vice versa! Moral Discourse on ACT Teams Brodwin’s observations about ACT: High-order ethics debates (autonomy & human dignity vs abandonment & the failure of deinstitutionalization) spurred the invention of ACT 35 years ago These debates have been “braided” into our moral discourse as it continues through many mediations Moral Discourse on ACT Teams “High-order ethical discussions about right and wrong hover above the site of clinical action, leaking into the words people use, constraining people’s actions without their knowing it, and sometimes entering their most personal anxiety about the obligatory and the forbidden.” Moral Discourse in ACT Culture When you started your ACT job you entered an established culture with: rules (e.g. confidentiality, consent) policies (college, hospital, legal) duties (e.g. ORB monitoring) particular interpersonal norms (e.g. assertiveness, coercion, respect) expectations of mutual support (teamwork, safety) black humour mandates (TAP, provincial standards) values (e.g. recovery, rehab) consumer rights and movement as a backdrop mental health reform in the wings Moral Discourse on ACT Teams We navigate culturally complex waters… Brodwin highlights that there are “ethical black boxes” behind the scenes that establish limits of allowable conduct, and these are used by front-line staff who neither know the history nor internal complexity of the box, but simply use it everyday for routine tasks and decisions. The boxes serve their essential purpose, but can also “precondition certain tensions, blockages, and frustrations in everyday work” Moral Discourse on ACT Teams The iterative process of moral discourse and its emergent trail of black boxes has shaped: Regulatory paperwork and forms The mandates and micro-politics of staff-client interactions The idealized self-image of front-line ACT staff Moral Discourse on ACT Teams Mostly, the black boxes are under the discussion table sending out their ethics beacon signals. However, when a substantial moral conflict arises, a black box is sometimes set right on the discussion table. When this happens, I suggest the more fitting image may be of Russian nesting dolls… The craftsmanship, history, and layers of ethics can be appreciated if explored…And you can stop at the level needed to restore balance to the clinical culture and get on with the job A caveat about how teams work… Teams are a disparate mélange of acculturated professionals with differing world views, different clinical paradigms, and conflicting values, duties, or operating principles. Obvious competing forces: personal morality, laws, culture, professional college guidelines, hospital rules, team views, limits/goals of the service mandate, role of client wishes, beliefs about efficacy and success. Given this, there are many ways that team structure and function can hinder treatment goals and outcomes, and more to the point, smother effective moral discourse. Potential Flaws in Team Functioning and Operations 1. Increased risk taking: greater willingness to accept risk as a team member as compared to individual decision making. 2. Diffusion of responsibility: unclear accountability to a team that is supposed to serve as as a support / resource / supervisory system. Abrogation of duty amidst a busy flow. (1-7 are based on Szeczeskiewicz 2005) 3. Mutual confirmation bias: shared view on manufacturing desired outcomes. 4. Belief in the inherent morality of group members: presumptions of goodness and craft knowledge may abound. 5. Mutual protection from criticism: trauma bonding, alliances, and sub-groupings leading to “us against them” mentalities or justifications. 6. Conformity: the pressure to conform to group norms or get out of the way; being punished for questioning; scapegoating as an inevitable group phenomenon; reenactment of family of origin dynamics; repetition compulsions; “Go along to get along”. 7. Restricted response repertoire: this is a closed shop that always does it this way… 8. Illusion of invulnerability: group strength phenomenon… 9. Role diffusion: “Staff members serve multiple roles – job coach, money manager, and medication assistant, as well as counselor. This necessary flexibility produces a role diffusion that can lead to a risky boundary diffusion” (Stovall 2001) 10. Allowing less skilled clinicians to get by with splinter skills: some team members function without a rich or encompassing paradigm and don’t know what they don’t know (e.g. ignorance of basic interviewing skills, limited understanding of boundaries. Intolerance of affect: silencing clients with cheeriness, encouragement, or a practical task focus in ways that are both distancing and emotionally alienating). 11. Sheltering and compensation for colleagues who are under skilled: this is an extension of the ACT protective posture to its own structures. Moral discourse in ACTion Let’s have some moral discourse… Three topics: 1) Weaving a value tapestry 2) A penny for your thoughts 3) Take one for the team 1) Weaving a Value Tapestry A shared piece of work… Would you do any of the following jobs at this stage of your life: Sell pop and popcorn in the stands at BC Lions football games? Work as a cook at Kentucky Fried Chicken? Weaving a Value Tapestry Be a security guard at a movie theatre? Clean hot tubs at an after-ski facility? Be a car jockey at a rental agency? Be a camp counselor? Be a high school supply teacher? Teach courses at a university? Weaving a Value Tapestry If you said “no” to any of the job possibilities, would you change your mind if you had to do it to feed your family? Would you do it if you thought it was a socially responsible and good thing to take part in our collective creation of a civil society? Weaving a Value Tapestry Are some jobs only suitable for slaves, lower classes, immigrants, high school drop-outs, trailer park boys, teenagers, women, or mentally ill people? What social biases and prejudice have permeated our collective unconscious? Let’s make covert barriers overt… Weaving a Value Tapestry Is every ACT client capable of working? Too sick all the time? No energy? No motivation? Is my bias an unconsciously insinuated impediment that supports a client’s sense of entitlement or helplessness? Weaving a Value Tapestry Yes, every single ACT client can work, under the right conditions Assisted, supported, modified, adapted, part-time, seasonal, volunteer… Weaving a Value Tapestry My value: We must not forget that our society is like a mobile whose fragile equilibrium and success depends on a shared commitment to all vocational roles. No work is below me or above me if it needs doing for our shared good. All work is noble and enobling. 1) A Penny for your Thoughts: Paying patients cash to take meds Fostering medication compliance in patients with serious and persistent mental illness who lack insight and who are repeatedly non-compliant A Penny for your Thoughts: Our Social Backdrop Financial incentive programs have helped with tuberculosis treatment compliance; encouraged dental care, weight loss, cocaine abstinence, births, stopping pregnant moms from smoking and drinking, getting parents to take kids to the doctor… In short, many social goods are prompted and accomplished through the use of direct financial incentives… A Penny for your Thoughts 70 % of psychiatric patients do not take their meds as prescribed By introducing payment into the equation, will voluntary adherence falter or disappear? Does paying for adherence undermine the basis for informed consent? A Penny for your Thoughts In a survey, 50 of 75 Managers of ACT Teams in Britain said paying cash for compliance is unethical We already use strong incentives and coercion (reward or punishment) with ACT clients (coffee, outings, housing, admissions). Why is cash different? A Penny for your Thoughts British ACT managers feared money was too coercive with poor clients and would affect the therapeutic relationship (make clients suspicious) In 2003 a British ACT team offered to pay 5 clients $10-$30 for each injection of medication 4 accepted… A Penny for your Thoughts Outcome: better compliance more likely to stay in independent accommodation fewer problems with neighbours and the police no admissions Just coincidence? Attributable to other supportive ACT elements? A Penny for your Thoughts So spending a bit may save a lot of money for the system… How to select… Just those who lack insight? High risk for non-compliance? History of violence? Heaviest users of services? All other interventions, persuasions, and coercive techniques have failed? A Penny for your Thoughts Behavioural therapies are based on explicit and consistent rewards… Is paying cash really immoral exploitation of the poor and vulnerable, or just a more positive variation on what we do already? A Penny for your Thoughts Bonus question: Should we pay patients with drug induced metabolic syndrome to exercise? 3) Take One for the Team The scenario: 25 years old with schizophrenia Followed by ACT Team History of noncompliance Decompensates slowly No history of violence or self-harm Lacks insight; otherwise well on IM Not capable for treatment SDM authorizes IM Client repeatedly refuses IM Repeated ACT-client confrontation every two weeks over taking the IM Take One for the Team The Health Care Consent Act (Ontario) authorizes valid substitute consent for treatment for an incapable client Does it also authorize the means necessary to deliver the treatment? Can we override the client’s refusal of the IM in the community when there is no threat to life or limb, and no likelihood of self-harm or harm to others? Take One for the Team Yes! A 2008 case settled before the Ontario Superior Court has spelled this out clearly for the first time and it has not been appealed… How do you do this in reality? Can you maintain the relationship?