Journal of Ethics in Mental Health

1. Journal of Ethics in Mental Health • Free online journal • World-wide access • Peer reviewed • 3 issues per year • Short articles, case studies • Intended for frontline staff www.jemh.ca

2. Community Psychiatry: Assertive, Coercive, or Disabling Sarah Garside Ph.D., M.D. FRCPC Haldimand-Norfolk ACT Team, Ontario, Canada John Maher M.A., M.D. FRCPC Peterborough/Cobourg ACT Teams, Ontario, Canada

3. The Tale: • A group of Canadians was playing golf in Scotland when a black sheep wandered in front of the tee-off area. • The biologist in the group commented: • “Ah, sheep in Scotland are black…” • The laboratory researcher dryly observed: • “Well, this sheep is black…” • The physicist suggested:“It seems that what we are observing appears to be an instance of a possible black sheep…”

4. The philosopher added: • “Well, at least the side we can see is black…” • The psychiatrist, while reaching for his putter, idly remarked: • “I wonder what colour the side we can’t see really is…” • The ethicist, busy keeping the score, commented to no one in particular: “It seems unfair that people are labeled as black sheep when the creature before us seems but a benign and gentle exemplar…” • A Scottish farmer who trailed the group and wished to play through yelled out:“Just tee off! A good ball to the chops will move that hunk of mutton out of yer way! “

5. Moral of the Story • If you are a frontline worker there are times when you have to play through even when everyone around you is still checking out the hole and may soon be teed off.

6. Our Presentation Foci • 1. The Ethical Milieu of Assertive Community Treatment • a) The Ethical Issues • b) How are ACT teams different? • c) Why are ACT teams a hot bed for the generation of ethical issues? • 2. A Different Kind of Ethical Defense of ACT Interventions • 3. Day to Day ACT Care: A Collection of Real Cases

7. The Ethical Milieu of Assertive Community Treatment Teams The Ethical Issues The “ethical issues associated with assertive community care reflect traditional rehabilitation dilemmas”: • 1. Issues of autonomy • empowerment versus neglect • care versus control • respect for autonomy versus intervention • 2. Issues of privacy and confidentiality • 3. Conflicts of duty (Holloway & Carson 2001; Szmukler G 2003)

8. 4.Assertiveness versus coercion is an issue with particular relevance to ACT. • Which is better? • living on my own with continuing psychosis and social impairment, or • living in a hospital with no psychosis, or • living in the community with no psychosis and a highly structured treatment framework encompassing me? • The answer is of course subjective

9. But what is least intrusive and most helps the client live the way he or she wishes? This is the intended ACT compromise. • What is the impact of severe and persistent mental illness on an appreciation of one’s own best interests, and the ability to make choices that further those interests?

10. A challenge for clinicians is assessing the effect of deficits (cognitive, behavioural, affective, developmental, physical) on judgment and capacity. Capacity both as a point-in-time, decision specific, ability, and, more nebulously, capacity seen as a pattern of abilities or a developmental orientation over time.

11. The greatest challenge is how, or if, to intervene, with clients with limited, or no insight, and variable decisional capacity. The necessary determinations of the impact these states have on the exercise of autonomy is both art and phenomenological projection. • Possible stances: Client centered Client centric “Client eccentric”

12. Some deficits are subtle • i) John is a 26 year old male who developed symptoms of schizophrenia when he was 14. Although now free of psychotic symptoms he has significant deficits in social functioning – often speaking impulsively and rudely to others he meets in the community. He has no friends but his family thinks he is doing OK. • ii) Janet is a 26 year old female who suffers from severe bipolar disorder. Although currently not psychotic she remains impulsive and scattered in her thinking. Her residual symptoms (frontal lobe) result in her inability to organize her day and to perseverate excessively on issues. Others simply see her as quiet and minding her own business.

13. Some deficits are obvious • Joe is a 24 yr old suffering from schizophrenia and has no insight into his illness. He has had 7 hospitalizations over the last 2 years, 3 of which have involved assault on police or other staff involved in his care. He always discontinues his medication after discharge and quickly decompensates. His parents have stated that he cannot continue to live at home unless he agrees to ACTT team involvement and takes his medication.

14. 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)

15. Key Point • Almost all of the clients on ACT Teams developed their illness in their late teens and early twenties, most had social difficulties in an extended prodrome, and all have impaired relational abilities. • Development happens in and through relationships, which means ACT clients have impaired adaptive functioning. You cannot be ill for a long time without necessarily becoming developmentally stuck in some operational domains. • How do you help someone get unstuck when they have never had the health- based opportunity to learn how to do it themselves?

16. 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

17. 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)

18. 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.

19. 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)

20. Bioethics “is largely predicated upon the notion that someone experiencing distress from illness, whether physical or mental, will seek help unless they lack capacity…However, if the person is displaying [signs of illness but] is not reporting any pain or distress, is actively denying these experiences or is refusing ’assistance’ with them, and if there is no legal grounds to justify an intervention, then what is the ethical mandate for health services to continue to try to intervene?” (Williamson 2002)

21. Consider: • Ben has a long history of schizophrenia and 18 years of prior continuous institutionalization. He murdered someone while psychotic a long time ago. Now deemed capable and in the community, compliance is a challenge for the ACT team, and he decompensates quickly. He fires the team every time he sees a clinician. And he just arranged for a family doctor (who is unaware of the client’s history) to prescribe his psychiatric medications. Yet the team continues to care for him, focus on his identified goals and to visit regularly.

22. Team members proceed as though a newconsent is implied with each successive encounter following a firing. When living it, it seems self evident that there is a flexibility inherent in a long term community relationship that is not paralleled in sporadic office based contact or occasional inpatient admissions. • The paradox is that outreach efforts actually increase when a client tries to stop care (Stovall 2001). There seems to be clear staff understanding and a shared commitment to the notion that we don’t ever go away…even when someone is well enough to decline care.

23. Assertive Community Treatment: what’s in a name? • Is it possible to be assertive without also being coercive at the same time given client vulnerability, dependence on care, stigma, poverty, and power differentials? Some argue that it is not. • If assertiveness always entails a tincture of coercion, do the improved outcomes (particularly in clients who lack insight or consistent capacity) justify staying the current social and policy course?

24. Can I coerce someone (threats or rewards) in a way that is not disabling? Can I push towards health or provoke an empowered response? • Letting clients make mistakes is different than letting them make life damaging mistakes (squandering rent money, illegal activity, etc.). • There is something persuasive about the rationale that the graver the consequence the greater the duty to intervene and override

25. This, in fact, often seems an adequate justification; but ACT teams step in over a lot of things that don’t seem at all grave. And they do it with “capable” individuals. • Take for example: anACT staff member who is upset over pornographic pictures on the wall of a client’s house and demands their removal. Or a client who must clean his house as a condition of getting ACT help with other needs.

26. As an adult I have earned the right to make my own mistakes, but how big can the mistakes be before duty calls another to step in? (A capable person is free to refuse even easily administered, painless, lifesaving care in Canada.)

27. “Don’t call the cops, we…” • refusals of care, and treatment compliance problems, are the daily fare for ACT service providers. Adherence is encouraged across an entire (but necessarily flexible) treatment plan, BUT • there are bottom lines. For example, at the outset (and as a condition of assuming care) we may say that “there are some things you have to accept or else…” (e.g. bloodwork, vitals, mental status assessments, medication monitoring)

28. ACT staff are in the risk assessment and management business which does make us agents of social security and social control. The perception of being ‘psychiatric police’ is not helped by the reality that many clients are regularly seen by staff with police officers in tow. • The challenge: balancing the needs and safety of the community with the needs and safety of the individual. ACT staff must juggle these split allegiances all the while maintaining a therapeutic alliance.

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

30. 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…

31. Adherence to standards is a functional cornerstone; there is no question that fidelity to an effective treatment model produces better outcomes (right clients, right illnesses, best responses). It is also clear that outcomes depend on good team function. (Burns T, Firn M 2002) • The “hardest” clients provoke and require a team response that makes acting under conditions of uncertainty somewhat more tolerable. In this can also be found a collective and shared evolution of understanding (of meanings, concepts, and the person).

32. However, there are also potential downsides to team function from an ethical vantage point: The model theoretically aims at reducing the pathological dependence that keeps clients stuck by spreading care over many team members. The reality, though, is that 1-3 staff persons become the stable contact points (prime, key worker, mini-team) with others used intermittently as needed.

33. The average time a client is served by an ACT team in Ontario is 5-7 years. Over that time, team members evaluate all aspects of a client’s life. In the shared process of doing so, at team meetings staff inevitably reveal their own values, biases, and prejudices over time. Staff get to know each other extremely well in this particular clinical setting. • Teams are a disparate mélange of acculturated professionals with differing world views, different clinical paradigms, and conflicting values, duties, or operating principles.

34. 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 conflict can also hinder treatment goals and outcomes.

35. Potential Flaws with this Team Structure (points 1-9 below are based on Szeczeskiewicz 2005) • 1. “Greater willingness to accept risk as a team member as compared to individual decision making.” • 2. “Diffusion of responsibility”: A “shared care model does not imply that all have equal responsibility for everything. The model requires that team members volunteer or are delegated to address problem areas and are accountable to the team that acts as a support / resource / supervisory system.”

36. 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.

37. 6. “Biased information seeking practices”. • 7. “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”. • 8. “Restricted response repertoire”: this is a closed shop that always does it this way…

38. 9. “Illusion of invulnerability”: group strength phenomenon… • 10. Weakening of accountability: abrogation of duty amidst a busy flow. • 11: 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)

39. 12. 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). • 13. Sheltering and compensation for colleagues who are under skilled: this is an extension of the ACT protective posture to its own structures.

40. 14. Discipline specific blind spots going unobserved: unwarranted reliance on discipline specific skill sets and mindsets [e.g. an individual clinician who unknowingly and innocently commits the same gaffe over and over, or undertakes some intervention without adequate training or supervision (e.g. psychotherapy)].

41. A Different Kind of Ethical Defense of ACT Interventions • Not respecting autonomy often tops the list of what is bad in ACT clinical practice. The easy defense is that ACT clinicians only override the wishes of those who are incompetent or incapable. However, our daily actions put the lie to this claim. • In creating this presentation we became aware that we have a hard time explaining why we do what we do in cases where the client is clearly capable at some level.

42. We both believe we are quite protective of autonomy and choice, yet we may very well be comfortable with some interventions that would give many outside of ACT teams pause. • An indefensible arrogance or an insider’s understanding?

43. Some proferred justifications for our intrusive behaviours: • ACT is less intrusive than the alternative - the four walls of an institution. • Fidelity is hoisted to the top of the guiding principle pyramid because: “Fidelity serves to remind us that clients have a claim on us that endures even when they refuse the treatment we offer” (Christensen 1995) • Clients will come to appreciate all that we have done for them in time.

44. It is acceptable that I intervene in the name of ‘caring’. • ‘Best interests’ must sometimes override ‘autonomy’. • If I were this sick I would want someone to ‘take over’ for me. • Paternalism is justifiable on the grounds of avoiding greater evils befalling the person, and when exercised from a beneficent posture in accord with the maxim, “Do as little harm as possible”.

45. While important, these lines of argument do not seem to fully capture what we think is really happening in the relationship…

46. What does it feel like for the two of us as psychiatrists? • We know our clients… We have a different kind of relationship with our ACT clients than on in-patient or outpatient services, or in long-term psychotherapy…not more or less caring, not more or less respectful, but clearly different. • How do we describe it? How do we defend it? Why does it seem like an important part of the justification for what we do?

47. We override autonomy because we believe, as a parent might, that clients sometimes cannot make a good decision that is truly in keeping with a broader and implicit duty or desire to live life well, to be whole, fulfilled; to find purpose and meaning in their suffering and travails; and to grow within loving relationships. We do this not because someone isincapable in a legal sense, but rather in a broader developmental or existential sense.

48. Doing it right morally takes humility and requires openness to learning the way together, which in turn requires empathy, phenomenological sensitivity, and attunement to a rich and turbulent inner life flow.A skilled clinician’sintimate awareness of the individual’s strengths and weaknesses leads to the privileged knowledge that opens the door to privileged action.

49. We have struggled for the metaphors or analogies that capture the spirit of what we believe is happening…… • And yet fear that in doing so we stand before you easily characterized as know-it-all, patriarchic psychiatrists. But we will try anyway…

50. The relationship between clients and ACT staff is more like: • Spouses than dates • Older couples than young couples • Twins than siblings • Veterans than civilians