ACT Government should include consumer groups on key voluntary assisted dying implementation group.
‘The ACT government has, by accident or by design, excluded consumers from involvement in determining who will or will not be able to access VAD when the scheme starts operation in November this year’ says the President of Dying with Dignity ACT, Sam Delaney..
‘There are no consumer representatives on a ‘clinical guidelines’ group established by the ACT Health Directorate. This group will develop guidelines for health practitioners which will, effectively, determine whether or not people with early-stage Dementia can get access to VAD, or when people conditions such as Parkinson’s Disease, can access VAD’.
‘The ACT Health Directorate has chosen to call it a ‘clinical’ guidelines group, but this ignores the explicit criteria related to judgements by individuals requesting VAD: are there treatments acceptable to the individual; is the individual suffering intolerably. One of the criteria in the Act requires a clinician to determine if a person is ‘approaching the end of their life’. But is this solely a clinical judgement?. The fact is that people, with conditions that may be ‘well managed’ clinically, choose to end their own lives because they consider life is no longer worth living because of intolerable suffering and loss of function and quality of life. Consumers should be included in developing guidelines on how to interpret this criterion’.
‘In 1995 the National Health and Medical Research Council issued Guidelines for the development and implementation of clinical practice guidelines’ which emphasised the importance of consumer involvement in guideline development processes.‘
‘The NHMRC recognised that while clinicians may be the experts on treatment options and clinical outcomes, the consumers are the best judges of whether the results of these treatments are of value to them. Medical history is full of examples of treatments that were regarded by doctors as best practice, but from the consumers’ experiences did more harm than good.’
‘The ACT Health Directorate established a Community and Consumer Consultation Group (CCCG) on VAD to provide it with advice on many aspects of the VAD implementation process – but the CCCG will not have an opportunity even to review the ‘clinical’ guidelines. The CCCG should review the guidelines, but this is not a substitute for consumer involvement in the development process.’
Dying with Dignity ACT ‘calls on the Minister for Health to ensure that consumer groups are included in the clinical guidelines process – for the very reasons recognised by the NHMRC 30 years ago. It would not be adequate just to allow the CCCG to comment on them. Consumer input is required from the start of the process.’