Discussion Paper: Living Wills — a response

I am a member of the Victorian Mental Illness Awareness Council, a member of the Melbourne Consumer Consultants' Group, and co-organiser of the OZMAD email discussion list. I am, however, writing this response as an individual, as one person with a psychiatric disability.

Psychiatric Advance Directives have been of particular interest to me for some time.

I first learned about Advance Directives four years ago, talking with US consumers/survivors on the international MADNESS email discussion list. I then approached the Mental Health Legal Centre, to find out the legal status of these documents in Australia —and discovered, to my amazement, that staff there were quite unfamiliar with them. They were, however, interested by what I told them, and wanted to know more. Needless to say, I passed on all the information I could track down.

I've since talked with many people here about Advance Directives —at conferences, at psychosocial rehabilitation programs, in consumer group meetings, over coffee, and on the internet. In almost all cases, people were unfamiliar with these documents —they'd never heard of them. In almost all cases, too, they were interested, and wanted to know more.

Psychiatric Advance Directives can fulfil a real need —almost everyone I talk with about them immediately recognises that. During periods of severe emotional distress or other psychiatric symptoms, it can be difficult to think clearly. It can be difficult to communicate your wants and needs effectively —and (unfortunately) even more difficult to get others to listen when you do. Too often, people's expressed wishes are ignored —because they're deemed "too sick" to make rational decisions. At these times, other people make decisions for us —according to their world-view, their value system and their idea of what's in our best interest.

Advance Directives can give us back a voice of our own.

I'd like to see psychiatric Advance Directives legally enforceable throughout Australia, as they are in Queensland and in several US states —Oregon, Minnesota and Texas amongst them. At the very least, I'd like to see changes to mental health legislation, removing any impediments to the use of Advance Directives in mental health settings. That said —I think Advance Directives can be used effectively, even in states where they have no formal legal status.

Advance Directives can and do influence treatment decisions, wherever and whenever mental health professionals are willing to recognise them. This professional recognition of Advance Directives is crucial —in my opinion, considerably more important than legal recognition of the documents. (If mental health professionals followed the treatment preferences expressed in Advance Directives as a matter of course —with input from nominated substitute decision makers as necessary — questions of legal enforceability would become, in the main, a non-issue.)

Even now, here in Victoria —where psychiatric Advance Directives are both non-enforceable and little known —treatment decisions can often be swayed by they documents. Advance Directives are clear expressions of people's treatment preferences, documented by them at times when they're clearly competent. As such, they circumvent the usual "they're too sick to know, or to decide" issues —a major reason why people's expressed wants and needs are ignored during times of psychiatric crisis.

The very process of developing Advance Directives can also be useful —encouraging people to explore and critically evaluate possible treatment options. Periods of emotional distress or acute psychiatric symptoms aren't conducive to this investigation of options —to say the least! —but it's during these very periods that important treatment decisions are often made.

I've often seen people deciding whether to have ECT —at a time when they were deeply depressed. Often, these people had been given little information about the risks of the procedure, and misleading information about its effectiveness. Even if all the appropriate information had been made available to them, tho —they just wouldn't have been able to take it in. Not then. Not while they were so unwell.

I've made my decision about ECT — during a time of few symptoms, after careful reading of the literature and discussion with both professionals and other consumers/survivors. If I experience a deep, medication-resistant depression some time in the future —and ECT is offered to me —I know how I should respond. And I hope my clear-minded decision —soon to be documented in an Advance Directive —will be respected.

When people are forced to make difficult decisions during times of psychiatric crisis —coerced consent is a real possibility. During times of distress, people may agree to treatments that they would otherwise refuse. (Obviously, the reverse is also the case.) How much better to investigate treatment options —including ECT —when symptoms aren't interfering with concentration and/or judgement? Advance Directives allow us to make some critical treatment decisions after careful consideration when we're at our best —rather than our worst.

When people refuse a psychiatric treatment —be it ECT, medication, or hospitalisation —it's often assumed that we're "unable" — or "too sick" —to consent. Sometimes, that may well be the case; often, though, it's not. Either way, though —well-meaning professionals often step in, and consent for us, on our behalf. This can be very problematic, especially when the professionals concerned don't know us well.

I know countless people who've had adverse reactions to one or more psychotropic medications —reactions ranging from unpleasant side-effects to exacerbations of psychiatric symptoms to potentially dangerous allergies. Many of those people were later offered the same medication(s) again, during a subsequent episode. And some were forced to take them —even after they described their previous adverse reactions. They were "sick" —and so they just weren't listened to, or believed.

A year ago, I had my first psychotic episode —a truly horrendous experience —in reaction to a commonly prescribed antidepressant. Other antidepressants have sent me hypomanic —so far, I've only found one anti-depressant that I don't react adversely to. I also have a severe seizure disorder —contraindicating a number of psychotropic medications. And I had to stop taking Epilim —a drug often prescribed as a mood stabiliser —because of increasing liver dysfunction. If I experience another psychiatric crisis in the future, I hope I can relay that information to the professionals I encounter. An Advance Directive, documenting my past medication reactions, could help.

Many consumers/survivors don't trust the mental health system —and with good reason. Too many of us have been hurt too badly —by bad, inappropriate or abusive treatment within services, by lack of access to good/appropriate treatment, or both. During times of psychiatric crisis, though —when our own judgement is considered unreliable —people within this system take on a role as our substitute decision-makers. Often, these system-nominated decision-makers know us poorly, if at all —yet they have enormous power over us and the treatment we receive.

Given the choice, many of us would prefer to nominate our own substitute decision-makers —people who know us well, and who we trust. In theory, Victoria's legislation already allows for this —people can nominate an Enduring Power of Attorney (Medical Treatment). Unfortunately, the Mental Health Act doesn't recognise a role for substitute decision-makers thus nominated —and may specifically exclude them. (The law is, so far, untested.)

Addressing some questions raised in the discussion paper more directly ...

Decision Making:

The psychiatric Advance Directive laws enacted in various US states allow people to make advance decisions about:

• admission to a psychiatric hospital (in Oregon —"admission ...for a period not to exceed 17 days")
• psychotropic medications
• ECT

"Other instructions" are always a possibility. The Bazelon model psychiatric Advance Directive, for example, allows people to indicate their preferred emergency interventions (medication in pill form, liquid medication, medication by injection, seclusion, restraint); it also includes a section on experimental studies. Some people may want to include quite individual instructions, about issues of importance to them specifically. Of course —these additional instructions may not be legally enforceable.

Some commentators have raised specific concerns about anti-psychiatry Advance Directives —about people who say "no psychiatric treatment, of any kind, ever." In practice, I don't think these Advance Directives would be upheld —at least not in sufficiently critical situations. That said, the question remains —should they be? Should people be able to refuse psychiatric treatment entirely —even if their life is seemingly at stake? (The usual anti-psychiatry argument: "If people hurt others —they've committed a crime, and belong in jail. If people hurt or kill themselves —their life, their decision." It sounds harsh —but there it is.)

The obvious comparison is with people with life-threatening physical illnesses. People with physical illnesses —say, cancer or AIDS —can refuse treatment —even if they'll die without it. They can refuse treatment in advance, too —end-of-life Advance Directives are far more widely recognised than psychiatric ones. If people with life-threatening physical illnesses can refuse treatment —even in advance —why can't people with (potentially) life-threatening psychiatric conditions? Should there be a difference between the two? The question remains ...

(It should be said —most people won't make anti-psychiatry Advance Directives. Many will rule out some treatments —but other treatment options will usually remain. Ideally, Advance Directives indicate treatments which people have found helpful, as well as those they find unacceptable.)

What resources would be needed to assist people to make advance decisions? Firstly, and most importantly —personal experience. Many of us have experience of many different medications, for example —and we know which ones work for us and which ones don't. Beyond that, though, the obvious answer is "as much information as possible". Of course —different people will have different information needs. For some, simple information in plain English is essential. Others will prefer to look at the professional literature. And still others will want something in between. Some people will prefer information in a language other than English. Some will prefer it in other-than-written formats —on video or audiotape, for example. Some will be comfortable with the Internet —and some won't be. Discussion —with either professionals or consumers/survivors or both —is also important.

I think a basic info pack could be developed, as a starter. No info pack, however, will ever be complete in and of itself.

Substitute decision-makers:

No Advance Directive, however comprehensive, can possibly cover every eventuality. A substitute decision maker —nominated through an Enduring Power of Attorney (Medical Treatment) or otherwise —can "fill the gaps", speaking for you in situations where you haven't left written instructions, or where your written instructions aren't legally enforceable.

Such a person would have to be someone who knew you well, and who you trusted. Your choice of person may vary from time to time —and, indeed, you might choose to have different substitute decision makers for different issues (this would lead to more complex documents —but it should be possible).

Obviously, a substitute decision maker could have enormous power over you and your treatment —especially if their decisions have more legal status than do your written advance decisions (probably the case here in Victoria, at present). How to avoid the potential abuse of that power? An obvious solution —to nominate multiple substitute decision-makers, and ask for agreement (or majority agreement) before decisions are acted on. In practice, of course, this could create difficulties —it may not be possible to contact all/most of the nominated substitute decision-makers quickly. (The same, however, could occur even with a single substitute decision-maker.)

Some people have raised the need for consumers to regularly update Advance Directives —ensuring, in particular, that they still wanted the nominated substitute decision-maker to represent them. Problematic scenarios involving out-of-date Advance Directives are easy to imagine —abusive ex-partners still legally representing people, for example. One suggested solution —time-limited Advance Directives, to be renewed, with any necessary amendments, every 6 months or so.

Administration:

Advance Directives need not be standardised —in theory, everyone could design their own, and to meet their needs. That said, a number of model Advance Directives have already been developed, in the US; they're readily available on the Internet.

The Bazelon Centre for Mental Health Law has developed a fairly comprehensive document:

http://www.bezelon.org/advdir.htm

The Oregon Office of Mental Health Services has another one, based on their state Advance Directives law:

http://omhs.mhd.hr.state.or.us/decform.htm

One individual's anti-psychiatry Advance Directive is also available online:

http://members.tripod.com/~Norsehorse/MWB_DPOA.html

Finally, Mary Ellen Copeland has put up a detailed Personal Crisis Plan:

http://www.mentalhealthrecovery.com/

(This is much more detailed than a typical Advance Directive, but could potentially be used as one. A much more typical Advance Directive is printed on page 20-21 of Mary Ellen Copeland's book Living Without Depression and Manic Depression)

What circumstances should invoke or revoke an Advance Directive? Obviously, an Advance Directive must be invoked if somebody is deemed "incompetent" or "unable to consent". For many of us, though —these documents could usefully be used before such a determination occurs. (It's not uncommon for people to be thought able to consent to treatment —until they refuse to consent to treatment. Then, they are suddenly deemed "unable to consent". Advance Directives could minimise that practice.)

Beyond determinations of incompetence, what circumstances should invoke an Advance Directive? These could probably be individual. In time, people learn which symptoms to watch out for, which symptoms signal trouble for them. For some people, these symptoms could probably serve as individualised invoking circumstances, to be written into their Advance Directive —Mary Ellen Copeland's Personal Crisis Plan uses this approach, as does her earlier model Advance Directive.

Revoking circumstances could be similarly individualised —or left to the good judgement of all concerned. Perhaps, though, a periodic review of the situation would be desirable —though the Mental Health Review Board or the Guardianship and Administration Board, for example.

I've already mentioned time-limited Advance Directives —as a way to avoid difficulties involving once-nominated-but-no-longer-trusted substitute decision-makers. Time-limiting Advance Directives, forcing people to regularly revisit them, could also help "ensure that [Advance Directives] were treated as a process rather than an event".

I've thought a lot about Advance Directives and, obviously, there's much I haven't been able to cover in this response. If you'd like to discuss the issues further, please give me a call on (03) 9386-0224, or e-mail me at strong@madnation.org

I'd really like to see psychiatric Advance Directives better known, and more widely used. Obviously, there are some legal difficulties —and probably always will be. That said —I'm a believer. Advance Directives are, first and foremost, documents for consumers/survivors. A way for us to tell professionals what we want and need —and what we find unacceptable. A way for us to be heard. Legal enforceability of Advance Directives —that's a bonus. In practice, just getting them out there —to the professionals in our lives, and the ones we might encounter in the future —that's what makes the biggest difference.

Yours sincerely

Ria Strong