Advance directives for mental health ‘Consumer participation in treatment planning’ – 17 August 2010, NWAMHS Catherine Leslie Lawyer / Policy officer Mental Health Legal Centre

Today’s presentation - summary What are ADs? How ADs differ Why are they important? De-mystifying ADs MHLC’s research – what consumers & clinicians say about benefits & challenges in implementation

Advance directives - what are they? Document driven by a person with mental illness that stipulates treatment preferences and practical necessities Drafted by person when they are well Used in the event of mental health crisis – when may be least able to state needs Optimal support, care & treatment “voice” of the person Participation in decision-making Not legally binding in MH context in Victoria but increasingly recognised and respected internationally

What do ADs look like? Mental health treatment preferences – Eg. Medication preferences, side effects, treatment history, reasons – Private psychiatrist, GP, social worker Lifestyle issues – Eg. Care of children, care of pets, accommodation – Who to contact if hospitalised & who can / can’t visit in hospital – Employment 3 types of advance directives: Instructional Proxy Hybrid

How do advance directives differ? From a treatment plan: Broader decisions – treatment AND practical measures “My life is more than just my illness” Consumer’s responsibility to complete Acknowledge power imbalance Enduring powers of attorney: EPOA (medical) doesn’t apply to psychiatric treatment

De-mystifying advance directives Overseas studies - Clinical utility ADs not used to refuse all treatment People are well-informed about treatment options Treatment preferences reasonable Reduced need for hospitalisation / coercion Reduced cost

Mental health system policy: Early intervention, ‘recovery’, consumer participation Law & human rights MHA, Treatment plan s19A – “must” take into account wishes Victorian Charter of Human Rights & Responsibilities – AMHS are public authorities & must act consistently with & give genuine consideration to human rights of client/patient (s38), – limitation on rights – reasonable, justified, proportionate & necessary (s7) UN Convention on the Rights of Persons with Disabilities – Autonomy & capacity, supported decision-making Common law advance directives Clinical practice: “Consistent with good clinical practice” In context- why are ADs important?

MHLC research Consultation with consumers Consultation with clinicians and stakeholders – Individual interviews & focus-group discussions Trial proforma: Further research possibilities – Pilot use of ADs Objectives: Consumer as ‘active voice’ in research – experiences Understand benefits, opportunities and difficulties in articulating, producing, implementing and accessing ADs Develop resources and information to improve understanding and respect – community education Identify law reform and practice necessary to enable recognition of and respect for ADs

What are consumers and clinicians saying?

Benefits of advance directives Preparation & drafting a therapeutic process – ‘what I need to stay well’; ‘what triggers my becoming unwell’ – Encourages discussion with key support people – clinicians, private providers, trusted others, advocates – what to do in crisis & who to contact

Benefits Empowerment & respect – “when I’ve been unwell, no one’s really listened to me” – Keith – “there is an amazing, sometimes hidden, expertise in the lived experience…” – Denise – “… a person is put at the centre of their own treatment rather than things be imposed on them” – John – “It's about not having to reinvent the wheel and to have the participation of your clients …” - MH nurse Valuable information - continuity of care, optimal treatment – “how do you know what I’m like when I’m well, unless I’ve told you?” – “..it becomes a repetitive task… to say what they want in their plan” - Enzo – “‘Who’s going to get my cat when I get unwell?’… [is] really huge in someone’s life” – MH nurse – “…that’s our problem… we are so medically driven” – Social worker

Benefits – cont. Taking responsibility: participation = improved mental health – “to be able to sit down and discuss things, has not only improved my situation, it’s improved my level of health” - Kerry – An AD is about “…getting it the other way round …if you give the client what he's asking for…this actually helps you [the clinician]‘ – MH nurse Promotes discussion – drafting & implementing -“…[H]aving a piece of paper that has some dot points saying what the discussion [about the future course of treatment] might… cover… can be very useful” - psychiatrist Clarifying roles – support people, family, clinicians Minimising stress, reducing uncertainty - “… their level of distress is higher because of the uncertainty of what is going to be happening at home… [If] you can give them the reassurance – yes this is being taken care of – you’re removing stressors which hopefully helps them to settle…” – inpatient MH nurse

Benefits – cont. Least restrictive alternatives, avoid coercive measures – “I was sick and tired of being in the revolving psychiatric hospital system…if I do go to hospital at least there’ll be an action plan involved…. [it is] for my own peace of mind” - Keith Developing therapeutic relationships, trust – “… I think the introduction – ‘Oh, look I see you’ve got an advance directive, … I’ve had a read through that. Now look I’ve already rung your neighbour [who says] that she will keep an eye on the house, she’ll look after the dog… - that as an introduction is a very powerful way of building a therapeutic relationship..” – MH nurse Less disruption to life Consistent with good clinical practice

Challenges Information and support to prepare document Form & language - Pro-forma or narrative? – “the more information you have… the more likely it is to be followed” - psychiatrist – “…you have to tune into the client's language, the consumers language, and doctors have a different speak and doctors are busy people…they read short snappy bits” – MH nurse – “If there's a 20 page document there … then we have to make the time and read it, it's important. I mean then we're giving people injections against their will, the least we can do is to read what they've set out and the reasons that they don't want that, before the fact I think” - psychiatrist Validity & ‘capacity’ – presumption or assessment? – “A person who doesn't have capacity cannot do a Will …an advance directive it's the same thing” – social worker – “…sometimes what people are looking for may not actually be capacity but may actually be compliance” – MH nurse

Challenges Enforceability & accountability – “reinforce the whole powerlessness in this situation” - Eva – “the ‘well’ me gets a seat at the table” – “…they would need to be able to be brought into account say in the Mental Health Review Tribunals, because I know that that makes a difference …[or] there’d be no real stick …for the system to use them” - psychiatrist Overriding Clinicians’ role in process - document most effective to implement – “... if I have an objection to something certainly I can look at it and I can advise and say 'look yes, in my professional opinion, I think this or this may not work’… [but] [t]oday I might be in the service and tomorrow I won't. So why should my preference be imposed upon [the person]?” – social worker – “I see it as a collaborative process” - psychiatrist Accessibility of document Confidentiality Cultural shift

More information Mental Health Legal Centre 9 th Floor, Queen Street Melbourne VIC 3000 Tel: Information & online proforma: Contact: Catherine Leslie – Lawyer / Project Worker (note new address as of 18 July 2011)