Knowledge lacking on end-of-life rights

The end-of-life wishes of people with dementia are not being met and this is partly due to a lack of knowledge among care professionals about a person’s right to refuse treatments, according to a report launched today by Alzheimer’s Australia and Palliative Care Australia.

End-of-Life Care for People with Dementia, which was commissioned by Alzheimer’s Australia with support from the Bupa Health Foundation, is based on a survey of 236 family carers and 783 care professionals, including registered nurses, general practitioners, specialists, enrolled nurses, and direct care workers.

The survey found that one in five family carers (20 per cent) and almost one in three CALD family carers (30 per cent) were dissatisfied or very dissatisfied with the wishes of the person with dementia being followed. And almost a third of care professionals (31 per cent) reported being unable to follow the end-of-life wishes of a person with dementia.

The report said this could partly be due to care professionals not knowing a person’s legal rights. The survey found a number of care professionals did not know or were unsure that people have the right to refuse food or fluids (29 per cent), refuse antibiotics at end of life (22 per cent) or refuse medical treatment or have existing interventions withdrawn (14 per cent).

Alzheimer’s Australia CEO Glenn Rees said the results showed that care professionals needed to better understand that people with dementia had legal rights at end of life.

“[People with dementia] have a right to an advance care plan. They can refuse medical treatment including antibiotics, food and fluids. They can have a not-for-resuscitation order and if they want adequate pain control even at the risk of death, they should be able to have it.”

Inadequate pain relief and training

According to the results almost a quarter of former carers (22 per cent) reported that pain was not managed well at end of life for the person with dementia.

While only a minority of care professionals (7 per cent) said they were uncomfortable with their ability to assess and manage pain for people with dementia, 13 per cent did not think, and 14 per cent were unsure, that adequate pain control which might also hasten death was a legal choice for people in Australia.

Mr Rees said the issues were difficult but clinicians had to understand that they needed a good reason not to follow a person’s wishes. “While the judgment of medical professionals is something that we all rely on and value, they do have to learn to balance their judgement and their skills with the wishes of the individual and that’s what makes this issue so difficult.”

The survey also found there was a gap in training. Many care professionals had not received any training on palliative care (26 per cent), communicating with non-verbal patients (28 per cent), the legal rights of a person with dementia at end of life (38 per cent) or assessment of pain in people with dementia (41 per cent).

However, a large majority of care professionals (90 per cent) said they would find training on end-of-life care for people with dementia beneficial. Mr Rees said this acknowledgement by health professionals was welcomed.

Other barriers identified

• 75 per cent of care professionals said people have access to palliative care services within their healthcare setting
• Family carers said at end of life their loved one did not have access to palliative care specialists (58 per cent), hospices (68 per cent) or support to keep the person with dementia at home (49 per cent)
• 60 per cent  of care professionals believed their organisation could provide appropriate end-of-life care for people from CALD backgrounds
• 39 per cent of family carers who had cared for a person with dementia at end of life reported that person had an advance care plan.

For people with dementia and their families Mr Rees said the obvious message from the survey was that end-of-life issues were difficult.

“But if you don’t talk about them, experiencing end of life with dignity and respect is going to be that much harder,” Mr Rees said.

To help people plan for their own or a loved one’s future financial, lifestyle and health care decisions, Alzheimer’s Australia, in partnership with health and aged care organisations including Palliative Care Australia, Consumers Health Forum, Carers Australia, and COTA, have created the website Start2Talk.

This site includes worksheets for consumers to complete or use to structure a conversation, information and links to local resources related to planning ahead in all states and territories, separate sections for self-planning and planning with or for someone else, and a section for health and community care workers.

The report and website are being launched today at a joint Alzheimer’s Australia and Palliative Care Australia Parliamentary Friends event.