Catryna Bilyk (Tasmania, Australian Labor Party) Share this | Link to this | Hansard source

I look back at how people with disability used to be treated and I can't help thinking we've made enormous progress in some aspects of care and treatment yet in others we've got such a long way to go. One of the first jobs I ever had was as a research assistant to psychiatrist Dr Eric Cunningham Dax. Dr Dax, for those who don't know, was a mental health pioneer, instrumental in some major reforms like moving people with mental illness out of institutional care to be treated in the community. He promoted approaches to care which were somewhat radical at the time but which are now regarded as absolutely basic.

In tonight's adjournment debate, I want to talk about one aspect of disability care in which we as a society are failing, I think, particularly badly—that is, involving people with disability in decisions about their palliative care. Palliative care is for people with life-limiting illness. It's not just about the last couple of weeks of life and it goes beyond just medical care. It's a holistic form of care which deals with a person's physical, emotional, social, cultural and spiritual needs. In this sense, palliative care goes to questions of where a patient wishes to spend the end of their life, who they want to be with, whether there are any cultural or religious practices they wish to observe, how they want their pain managed or under what circumstances they wish to have emergency medical intervention, or not at all, to sustain their life.

Palliative care is in a poor state in Australia, not just because of the lack of services but also because of Australians' general reluctance to have conversations about death and dying. This results in few Australians writing advance care plans or discussing their care wishes with close friends or family and, as a result, many Australians don't have a good death. They don't have a death in the place of their choosing or in accordance with their care wishes. This picture is even more grim for people with disability.

For many Australians with disability, particularly those with intellectual disability, the idea of involving them in decisions about palliative care is virtually non-existent. This is not because service providers, families and carers of people with disability are indifferent or uncaring; it's a case of caring and well-meaning people just not knowing what to do, how to handle it. Family members, carers and staff of service providers are generally afraid of having frank and honest conversations about death and dying with people with intellectual disability because they're worried about upsetting them.

This problem was highlighted in a March 2016 report written by Anna Holliday, who works for the disability service organisation Liviende Veranto—Li-Ve Tasmania, for short. Ms Holliday was initially tasked with investigating what constitutes best practice in delivering palliative care to people with disability. This was particularly important for Li-Ve Tasmania because a number of their clients in residential care and in independent living arrangements were obviously getting older. In some cases, the disabilities of the residents also resulted in them having shorter life expectancies and so the need to provide palliative care was becoming an increasingly frequent occurrence. After extensive investigations, Ms Holliday found there was no clear guidance on what constituted best practice in palliative care for people with disability, so her next task was obviously to develop it.

Ms Holliday undertook a project which involved conversations with 110 people about their perspectives, ideas and experiences when it came to palliative care, death, dying, grief and bereavement. These included 36 people with disability, seven friends and family members of people with disability, and 67 service providers. The findings of the studies were insightful, but they were also quite shocking. Service providers appeared to have very little awareness of end-of-life planning and services, and there was limited access to palliative care services. As a result, people with disability in the end stages of their lives were often transferred to hospital or aged-care facilities. These transfers obviously caused immense distress because people were taken out of a familiar environment, away from the routines they were used to and the people they were surrounded by on a general daily basis. Some people, because of their disabilities, had trouble expressing their wishes to aged-care workers or hospital staff who were not familiar with their means of communication. This diminished the quality of their care even further.

There seems to be an attitude in the community that people with intellectual disability are incapable of understanding the concept of death or of making decisions about their own care or living arrangements, and we find that people with intellectual disability often go along with the decisions that are made for them. We need to change society's attitude and stop underestimating the capacity of people with intellectual disability to make decisions for themselves and their capacity to understand death and dying. Unfortunately, for fear of upsetting people with disability, carers and family members will often avoid conversations about death and dying. The following quotes from Ms Holliday's report illustrate how this approach affects people with disability:

"Everybody else talked around me but no-one talked to me"

"When I ask questions or want to talk about him, people say 'don't worry about that anymore' or 'we're not talking about that anymore"

"Not one person has talked to me about Mum since she died. No-one says her name. I can't talk to anyone about her anymore"

There are also people who will engage in conversations but speak in euphemisms, like saying that the person who has died has 'gone'. 'Gone where?' is the obvious question to that. I often wonder why we as a society are so afraid to use the words 'death', 'died' or 'dying'. The irony of the way people with intellectual disability or cognitive impairment are treated when well-meaning people try to avoid upsetting them is that they get even more upset. As the report observed:

For a person whose cognitive functions are compromised … it is common that carers will try to minimise the effects of grief by presenting modified information. … However, listening to the experiences and perspectives of Tasmanians with disability, avoidance of the topic of death and dying significantly adds to feelings of confusion, isolation and fear when they are faced with the situation of a life limiting illness or death. Thus, resulting in people feeling fearful, disconnected and alone.

We need to appreciate that the failure to engage people with disability in conversations about death is also affecting our ability to involve them in decisions about their own care at the end stages of life. It is as true for people with disability as it is for everyone else that being involved in decision-making is the key to quality palliative care. Quality palliative care is a human right, and, where this right is denied to people with disability, they are having experiences of dying that are confusing and distressing, with some not even knowing that they're unwell.

Disability service providers and their staff also need to understand this. People working in acute care or aged care know that they will have to deal with death and dying, but often disability workers don't think of this as something they will have to confront. But working in disability services will mean having to provide palliative care and having conversations with your clients about death. Education and training is needed to help service providers and their staff understand that there is a lot more to palliative care than just a medical response to life-limiting illness. Certificate courses in the disability industry should include compulsory learning about death and dying, which are currently elective options.

Disability service organisations need clear policies and procedures on how they care for someone with life-limiting illness—policies which involve people with disability in decision-making about their care. This also means having clear policies on care coordination and what everyone's roles are. These changes will help develop a culture of normalising language which describes dying and death in concrete terms, but, like any cultural change, obviously this will take time. Li-Ve Tasmania have used their research to develop best practice guidance on how to care for people with disability and life-limiting illnesses and they are sharing this guidance with service providers not just in Tasmania but around the world. Ms Holliday is continuing her research with support from the University of Tasmania but is not receiving any state or federal government funding. She is also promoting partnerships and collaboration between the disability and palliative care sectors. (Time expired)