Ethics in ACT Ethics in Action Ethics in Traction John Maher MA MD FRCPC

1. Ethics in ACT Ethics in Action Ethics in Traction John Maher MA MD FRCPC

2. 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

3. 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)

4. 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

5. “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)

6. 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.

7. 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)

8. What makes ACT successful? (And from whose perspective?) • Objectively the endpoints are clearly good: • better health, • better relationships, • better housing, • better food,.. • fewer hospitalizations

9. 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…

10. Our ACT World • Nice rug • Nice couch • Breathe through your mouth • Last meal • Lying, drug seeking, anger, rejection, danger • Intruder, psychiatric police • Compassionate advocate

11. 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)

12. 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

13. 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

14. Compassion Fatigue • Compassion Fatigue: the not inevitable cost of caring… • Emotional exhaustion • Physical exhaustion • Vicarious trauma

15. 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

16. 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…

17. 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?

18. 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…

19. 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…

20. 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…

21. 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 well-being, and humiliate them in public.” • It is a double bind…

22. 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)

23. 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

24. 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.

25. Compassion Fatigue & Moral Stress • Key idea: Suffering and sadness co-exist 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

26. 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

27. 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)

28. 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)

29. 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)

30. 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)

31. 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

32. 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)

33. 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?

34. 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

35. 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”

36. 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 high- order virtues or rules of conduct.”

37. 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)

38. 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…

39. 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

40. 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.“

41. 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…”

42. 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)

43. 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?

44. 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…

45. 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.”

46. 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.”

47. 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!

48. 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

49. 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.”

50. 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