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Discussion Paper: Living Wills

From: Brad []

Sent: Wednesday, January 27, 1999 11:27 AM


Subject: Discussion Paper: Living Wills


This is a submission from Brad Wronski, senior member of the Individual Advocacy (mental health) Program, at Disability Action Inc., South Australia. This program has been in existence for 4 1/2 years, in which time we have provided advocacy to over 370 individuals with various forms and degrees of mental illness. Issues surrounding involuntary treatment currently account for over 10% of our work - hence our special interest in the topic of "Living Wills".



I would like to focus on the connection you quite rightly draw between living wills and individual service (a term I prefer to 'treatment', as it indicates the breadth of what may be required) plans. The fact that mental health services quite casually operate without individual service plans should be a cause of grave concern, not only to those with a special interest in mental health, but to every citizen. In crass material terms, it means that services cannot account for the money they spend. They can point to numbers of clients served but are unable to say, for a single given client, what concrete needs were being addressed, what goals pursued, what changes promoted, and whether any progress is being made.



I hold individual service planning (of which hospital discharge planning is an even more harmfully neglected component) to be a minimal requirement for an accountable service. If it became common practice among consumers to create "living will" type documents and SEE THAT THEY ARE KEPT PROMINENTLY ON FILE by service providers, it might help to nudge the service toward greater accountability.



The power and value of a living will depends on the type of advance commitments the consumer can obtain from other parties. These may be commitments to doing certain things under certain circumstances, or to refraining from doing things.



As the discussion paper points out, services simply will not make such advance commitments. They retain the prerogative to deliver only such of their services as they deem fit, only when they deem fit to do so. A powerful, perhaps dominant, component of the service ethos is the tacit conviction that nothing the consumer says or does is to be taken at face value. Every expression must be inspected, interpreted, assigned its proper weight. So even if service providers had the practical capacity to make and honour commitments to consumers, they would have to first persuade themselves that consumers are capable of bona fide negotiations and commitments.



(I hasten to add that I am aware of many, many individual consumer-provider relationships where this barrier is overcome to a greater or lesser degree. To what extent these relationships influence the outlook of "the system" is far from clear.)



In the case of refraining from certain actions, service providers' ability to make an advance commitment is limited for different reasons. Our clients' experience suggests that continuity of care is one of the first values to be jettisoned (if it was there in the first place!) when a person is detained in hospital. Judgments of the person's decision-making capacity. of the need for involuntary treatment, and of the specific treatment needed, are most likely to be made by a doctor who has no prior knowledge of the individual. Often, it appears that the doctor has made these deliberations without having, seeking, or making use of, input from those who have known the patient over the long term. In some instances at least, it appears that undue reliance is placed on a quick and selective reading of notes of prior hospital admissions - an extremely skewed representation of the person.



It should not be the consumer's responsibility to document such things as treatments that do and do not work for them, medications that have adverse effects for them, or the typical pattern and course of their acute episodes. But as things are currently, such documentation - as in a living will - may be a practical way to get this information to people who will need it. It may help those doctors who will admit that they could make a mistake, to avoid making one. As stated before, PLACEMENT of the document would be crucial. If the document could be endorsed by the individual's normal doctor and/or other service provider, its influence would perhaps be increased.



Recent experience suggests that, at least here in South Australia, neither the filing of a living will nor the appointment of a substitute decision maker would enable a consumer to absolutely prohibit his or her being given any specific form of treatment allowed by law. The Guardianship Board would retain the power, acting in the consumer's "best interest," to override her or his wishes, however explicitly and formally expressed.



South Australia does in fact currently provide for individuals to appoint a Medical Agent under a Medical Power of Attorney, enabling the agent to make "medical" treatment decisions for them should they become unable. None of our clients to date has had such an agent, so the potential value remains unknown to us.



(It is perhaps worth noting that the word "medical" is one that services can hide behind to justify a non-holistic approach, sometimes limited to monitoring positive symptoms and adjusting medication accordingly.)



Legally recognised "Anticipatory Directions" may be made, but only to cover "the terminal phase of a terminal illness." Enduring Powers of Attorney and of Guardianship may also be assigned. My impression is that these are seen to apply primarily to permanent incapacity, and thus are of no greater interest to people with mental illness than to the general public.



In summary, the concept of a living will has limited but significant potential value . Living wills could encourage services to improve themselves, demonstrating that consumers are prepared to be not just equal, but leading partners. They could help prevent avoidable mistakes on the part of hospital doctors and other staff, who are perhaps working under high pressure and without adequate information. Finally, they could place a significant - though not insuperable - hurdle in the way of doctors wishing to prescribe forms of treatment the consumer finds unacceptable.