Submission: Living Wills: Lacey
LIVING WILLS
Submission to: Disability Rights Policy Unit,
Human Rights and Equal Opportunity Commission
from: Mark Lacey,
Consumer Consultant,
Grampians Psychiatric Services,
Ballarat, Victoria.
General questions:
1. Do living wills have the potential to further ensure the rights of people with a mental illness?
Yes, I think these documents allow consumers to have a say at a time when we are well to safeguard our rights and treatment when we are not well.
2. Is there a need for living wills in the area of mental health?
Yes. The difference in judgment and perception of life and events from when one is well to when one is psychotic is quite extreme, so anything that can be done to make this passage, and the return to wellness, a little easier is to be recommended.
3. What might be the uses, benefits and limitations of living wills?
Uses: to be a part of discharge planning in order to give the consumer a sense of control over his or her life, and illness.
to assist mental health services in the treatment of someone in relapse.
Benefits: help a consumer come to terms with his or her illness and to plan for possible relapse.
reduce the effects of relapse, and possibly the risk of relapse, due to awareness and planning.
Limitations: often psychosis is different to what is expected, and can't be effectively planned for.
mental health services may override decisions made when a person is well, in reaction to difficult behaviours when unwell.
4. Who should living wills be made available to?
All consumers of public mental health services on discharge from the service.
5. What are the resource implications for the introduction of living wills in the area of mental health?
Case managers and acute unit staff would need to be trained in the development and use of living wills.
Part of discharge planning would need to be development of a living will, if desired by the consumer. This may require extra funding by government as it would add to the hours spent with the consumer.
I would favour the creation of a new, independent body to oversee living wills, with some consumer and carer representation. Both the Guardianship Board and the Mental Health Review Board are associated with negative restriction of consumers' freedoms, and I would prefer to see a board which was more responsive to consumers' needs and rights and less authoritarian.
6. If living wills are of sufficient interest to those involved in mental health to merit further research, which body (or bodies) would be best placed to be responsible for developing legislative and administrative frameworks for the implementation of living wills?
Human Rights and Equal Opportunity Commission along with Mental Health Legal Centres, consumer and carer peak bodies.
Terminology
1. Consultations with consumers suggest problems with the term "living wills". What alternative term could be used?
Something simple and clear like "Plans for possible relapse".
Decision making
1. What kinds of decisions could be made in advance?
Person, people or team to treat the illness.
Medications which are/ are not useful.
What to see as signs of illness: what has been part of psychosis in the past and what is real and should be accepted.
Therapy and non-medical and alternative treatments that are helpful.
Substitute decision makers and their powers and responsibilities.
2. Are there limits to what consumers can ask for in advance?
Yes. Each episode is different and it is not possible to plan for everything, only give some rough guidelines.
3. What resources would be required to assist consumers to make advance decisions?
Help from case managers, and other consumers who have made living wills and found them to be helpful.
Substitute decision makers
1. How could a substitute decision maker be of benefit to consumers?
More insight than unwell consumers.
May have more influencing power for rights than someone who is unwell.
2. What obligations and responsibilities would substitute decision makers have?
To always act in the best interests of the consumer.
To discuss every decision with the consumer, however unwell.
3. Would it be desirable to have different substitute decision makers for different matters?
Perhaps- leave it to individual consumers to decide.
4. How might the potential be avoided for a substitute decision maker to deny access to appropriate care or approve access to inappropriate care?
Establishment of a review board for living wills for consumers to bring complaints against their substitute decision makers. This board should include representation both from consumers and those who have acted successfully as substitute decision makers.
Participation and consultation
1. What are the benefits of consumers participating in decision making?
Greater awareness of illness and chance of recovery for consumer.
Greater equality in service between consumers and staff.
Greater say in treatment on relapse and chance to learn from past experience.
2. Could living wills facilitate greater participation and consultation in care?
Yes. Consumers become involved in planning for potential relapse and in treatment decisions when unwell.
3. How might living wills ensure that interactions between consumers and providers is beneficial?
By writing in the wills good and bad treatment in the past and lessons to be learnt from these.
4. How might living wills ensure that adequate information exchange occurs?
Decisions made which go against a consumer's wishes, at time of unwellness, but agree with the living will, could be explained more easily.
Individual treatment plans
1. Is an individual treatment plan necessary to make a living will effective?
Yes. The living will should be part of this plan.
2. Consultations suggest that individual treatment plans are not being developed. Given this evidence what would have to happen to ensure that treatment plans are developed?
Tighten legislation and independent reviews (e.g. chief psychiatrist's review) to ensure that these are done.
3. Could living wills enable better before and after care strategies for consumers?
Yes, by allowing these to be developed in a genuinely equal partnership.
4. Could living wills enable better discharge planning and ensure the benefits of discharge planning?
Yes- currently re-entry to services on relapse is often difficult. With the introduction of living wills, this could be improved as services would be prepared (as would consumers) for relapse.
5. Could living wills ensure that different needs such as maintaining employment or housing are accounted for?
Yes, by giving directions as to what action to take in the event of a relapse. Also. consumers could make an agreement with employers and landlords about relapse and its implications.
Advocacy
1. How might advocacy services benefit from the availability of a living will?
Documentation of what is real or unreal; useful or harmful; agreed to or not agreed to by consumers in treatment, by which services would be bound by legislation to follow.
2. Could a living will enable a consumer to advocate on his or her own behalf?
Yes, by pointing out that his or her request is consistent with what was said when well.
Administration
1. What might a living will look like?
Personal details.
History of illness.
A section for each area: medication
symptoms of unwellness
other therapies
substitute decision making people
their powers and boundaries to power
what is usually a sign of wellness and what is not
agreements with employers, housing workers and others
Signed by: consumer
substitute decision maker
employer
housing agent
case manager
psychiatrist
nominated workers
2. What circumstances would invoke or revoke a living will?
Invoke: consumer becoming unwell and needing to be taken into care
symptoms outlined in living will occur, or similarly difficult.
loss of insight.
Revoke: consumer asking when demonstrably well, as shown by Model Legislation, and able to give a good reason why revoking is occurring (to safeguard against change on cusp of relapse)
3. What kind of process would need to take effect once a living will was invoked?
Consumer informed of invocation of living will, and all decisions made in accordance with this will explained.
All relevant and stipulated people to be informed, subject to confidentiality (e.g. worker, substitute decision maker...).
Mental health workers to be aware of and adhere to living will.
4. What safeguards would be required to ensure that living wills were available and validated?
Necessary part of discharge planning and treatment on relapse.
Legislation to ensure staff's co-operation with requests in living will.
5. What kind of process could ensure that living wills were treated as a process rather than as an event?
Review of mental health services to check that living will was in place or had been offered to each consumer who is discharged.
Documentation to record compliance with living will on relapse.
6. Is the determination of capacity as outlined in the Model Mental Health Legislation adequate? If not, how should capacity be determined?
Perhaps also add, "Consumer should be able to give a clear reason that is understandable as to why the living will is being revoked". This may ensure that the living will is not revoked when the person is becoming unwell.
Resources
1. What resources would be required to implement and administer living wills?
A board to review living wills and their implementation and any cases of misuse made up of members including consumers and carers.
Funding to allow service providers training and support in developing living wills on discharge.
Legislative and service considerations
1. Would living wills have the same benefits across all jurisdictions?
Yes. I believe anyone, from child and adolescent consumers to elderly people to forensic consumers would gain from taking stock of his or her illness and planning for relapse.
2. Should provision be made to take account of local and regional differences?
Some provision should be made to allow for transfer of residence to another region, should the consumer move.
3. What legislative frameworks could accommodate living wills?
Legislation needs to include guidelines for co-operation by mental health workers with a living will.
A board to review cases of abuse of living wills.
Legislation on circumstances in which living wills could be revoked.
Other interests and obligations
1. What obligations would living wills place on health professionals, courts and tribunals?
These would be required to follow the directives of a living will, except where it could be demonstrated that decisions made in conflict with the living will were in the best interests of the consumer and/ or the community.
2. How would living wills affect the decisions of professionals and decision making bodies?
These decisions would have to be in accordance with consumers' wishes when well, except as specified above.
3. What are the benefits and limitations of living wills being legally binding?
Benefits: Ensures greater accountability to consumers and greater partnership in service.
Limitations: Not aware of any.
Workability:
1. What current difficulties would have to be overcome to enable consumers to benefit from living wills?
Some consumers may not have enough insight into their illnesses to make a living will.
Some workers may not be prepared to co-operate with requests of a living will.