Advance Directive (Schedule 2) Community Study – Final Report

EXECUTIVE SUMMARY

The aim of this study was to assist with the development of an appropriate advance directive (Anticipatory Direction) in health care and to explore ways of disseminating information about it. Focus groups were used to consult with members of the South Australian community about the suitability of the current advance directive instrument, ie Schedule 2 of the Consent to Medical Treatment and Palliative Care Act 1995 (SA). Schedule 2 was explored in depth as well as more structured alternative pro forma.

MAIN FINDINGS:

Prior knowledge:
Few Participants in this study were aware of the terms, ‘advance directive’, ‘living will’, the The Natural Death Act 1983 or The Consent to Medical Treatment and Palliative Care Act 1995. There was uncertainty over the function of a “living will”, the nature of palliative care and the distinction between palliative care and euthanasia.

Current Schedule 2
Many participant failed to realise that the patient not only had to be incapable of making decisions, but also gravely ill as described in Schedule 2 of the Act. The term “final phase” of a terminal illness and the medical condition “persistent vegetative state” were not well understood. The majority of participants stated that it was not possible to express one’s wishes about treatment without knowing what treatment might be necessary. It became apparent that, for some people, guidance is necessary. Some participants would approach their doctor for help; others thought that a doctor’s advice was not necessary. Some thought it appropriate to see a lawyer, while others stated that there should be more information provided so that individuals could complete the form themselves. Although the concept of an advance directive was favourably received, few indicated that they would complete one.
 
‘Instructional’ Advance Directive (the alternative Schedule 2)
There was some enthusiasm for listed “wishes” as set out on the alternative schedule. However, it was not considered satisfactory to have a form which had no alternative or choice.

Pamphlet
The pamphlet “It’s your life – all of it. An explanation of the Consent to Medical Treatment and Palliative Care Act 1995” was considered informative about the Act but not specifically helpful for those people wishing to complete the Anticipatory Direction (Schedule 2).


RECOMMENDATIONS:

Recommendation 1:        Enhance the current Schedule 2 instrument
It is important to remove perceived areas of confusion or misunderstanding in the current Schedule 2. (See appendix E for the suggested revised schedule.)

Recommendation 2:         Provide relevant information to assist people to complete Schedules 1 and 2
An advanced directive is essentially a communication between a lay person and a medical practitioner anticipating a future medical condition. It must be made in terms comprehensible to both. The option of appointing a medical agent should also be explained. It is recommended that a pamphlet of explanatory information be developed to provide guidance for people when completing Schedules 1 and 2.
 
(See appendix F for a proposed pamphlet.)


Recommendation 3:        Further inform and educate the public
Suggestions made in the body of this report focus on the use of multiple channels of communication and repeated consistent messages over an extended period of time which are necessary to inform and educate the public. These would require further funding. The best opportunity may be strategies which involve interaction with a general practitioner as the primary health carer.


Recommendation 4:        Follow up study with General Practitioners
A follow up study to examine the inter-relation between general practitioners and their patients in the completion of an advance directive (Anticipatory Direction) is recommended. This will provide a basis for determining training and support for general practitioners so that advance directives can be integrated ino mainstream health care. A proposal for a study with General Practitioners is included.

(See appendix G).