Guidelines for a Palliative Approach in Residential Aged Care

Vignette 2: Robert’s story
Robert continually stated he wanted to die, refusing to eat and being reluctant to
cooperate with any care offered. Eventually he was transferred to hospital for full
investigation and advice regarding his ongoing care. No physical cause could be found for
his wish to hasten death, although it was clear his weight loss and reluctance to accept
care would lead to life-threatening complications. He was returned to the facility ‘for a
palliative approach’. A sensitive and discerning RN invited Robert to the care planning
meeting she’d arranged with Robert’s doctor and his family. On careful questioning it
became clear that Robert was grieving for his wife, who had recently died. He was also
angry that he had not been permitted to attend his wife’s funeral, family and staff having
decided he was too ill. When asked what his wishes were for the remainder of his life,
he was quite clear. He wished to visit his wife’s grave, he wanted the “damn catheter
out” and did not want to be forced to eat. When these wishes were met, together with
appropriate pain relief for symptoms recently developed, Robert stopped his saying “I want
to die” and became less distressed.
3.4 PRIVACY AND CONFIDENTIALITY
It is important to ensure that the aged care team maintains the privacy and confidentiality
of the resident as much as possible. This can be difficult when family members demand to
know private information pertaining to the resident. Therefore, the aged care team need to
have an understanding of the relevant State and Commonwealth legislation, regulations and
instruments concerning privacy so they can be informed as to their legal responsibility to
ensure that the resident’s information remains private and confidential. Examples of legislation,
regulations and instruments include the Privacy Amendment Act (Private Sector) 2000, the
Freedom of Information Act 1986, professional codes of conduct and Registration Acts.
In Australia, no medical services can be provided without the consent of the person concerned.
This consent is considered informed consent when the person assents to a treatment without
duress, voluntarily gives their consent after a reasonable time, and has been provided with adequate
information. The only exception to this is when the person’s capacity to consent is impaired by a
serious mental illness, in which case the relevant State Mental Health Act can be invoked.
If a family member has been granted a legal right to make decisions for the resident, then
the form stating this must be sighted by a member of the aged care team and its powers and
limitations noted on the resident’s record. The aged care team can then be directed by this
document as to how much information they are able to share regarding the resident. As the
legislation may vary regarding the responsibilities of people who are authorised ‘in advance’
by the resident as ‘Enduring Power of Attorney’ (financial or medical) or ‘Enduring Power of
Guardianship’, it is incumbent upon each RACF to check legal requirements (see Appendix I
‘Resource List’ for contact details).
Although residents with the capacity for informed decision-making must have the right to privacy
and confidentiality regarding their health care information and the right to exclude their family
members, it is rarely appropriate to exclude appropriate members of the family from acting as
the commonsense advocate for vulnerable older persons. The Guidelines on Privacy in the Private
Health Sector (available at www.privacy.gov.au/publications) allow disclosure of health information
52 Guidelines for a Palliative Approach in Residential Aged Care