With the increasing life expectancy of people with intellectual disability, terminal health conditions – like cancer and heart disease – are emerging, but appropriate services for end-of-life care are sadly lacking outside metropolitan centres.
Lead researcher Associate Professor Stuart Wark, from UNE’s School of Rural Medicine, said this is forcing people who often have complex medical needs to travel considerable distances at considerable expense to access healthcare, which compromises the quality of their remaining days. Others are moved prematurely or inappropriately into aged-care facilities, isolating them from established social networks.
“This study sought to give people with intellectual disability in rural areas a voice on what constitutes a good end of life,” Stuart says. “We identified three key themes: the poor availability of support, lack of respect for individual needs and unmanaged pain as the main barriers to them experiencing a good death.
“Our systems are not set up to support these individuals when they need it most. This is a growing cohort of older Australians, so their care now needs to be a higher priority.”
The study was guided by an advisory committee comprising people with intellectual disabilities, carers and service providers. It relied on 400 survey responses from disability organisations, support staff and medical professionals; and focus group discussions with rural disability support workers, family members and carers of people with intellectual disability at four rural sites in NSW and Queensland, who reflected on past experiences. Collectively, this represents the first exploration of end-of-life care for people with intellectual disability in a rural setting.
Stuart said while not all individuals can comprehend the concept of death, persistent paternalism was complicating the issue for many who could. “Even someone with a severe intellectual disability can give reasonable insight into what they want to happen at the end of their life,” he said. “However, we found that that can be dictated, instead, by family members or carers. It’s common for individuals not to even be told they are dying, but everyone has the right to know about their situation, out of courtesy and respect.”
The study concluded that the individual and their family (where possible) needed to be more proactively involved in discussions, so that individual wishes can be clearly documented. “What we found, sadly, is that often the family don’t want what the individual wants for their funeral,” Stuart said. “Staff members reported tension between families that wanted something quiet and reserved, possibly religious and in a church, whereas the individual wanted a party and ACDC’s Thunderstruck played.”
The individual’s preferences also need to be taken into account in life.
“If the person has been living in supported accommodation for many years, then moving them to an aged care facility for palliative care – and severing contact with their friends and familiar carers – may not be the best option,” Stuart said.
“We found that there are few local supports to assist an individual to remain in their own home or to maintain their normal routine when approaching end-of-life, which often meant they were moved suddenly and perhaps inappropriately.”
But perhaps the team’s most troubling finding related to the management of pain. “People who don’t have good communications skills can’t always articulate their pain levels very well,” Stuart says. “Family and carers need to be very conscious of undiagnosed pain and quite forceful with doctors in advocating on the person’s behalf. Palliative care nurses are often best able to understand the amount of pain someone might be in, but there is a real shortage of them in rural areas.”
This paucity of specialist health providers and allied services, and the inflexibility of government funding for urgent end-of-life care, further compounded the issues. “While they are likely to be experienced across Australia, the lack of access to services due to geographic disadvantage has very clear impacts on the quality of life for rural individuals with intellectual disability,” Stuart said.
Having identified the rural shortcomings, Stuart hopes that service providers and frontline staff will heed the study’s results.
“Staff are mostly very caring and quite a few were traumatised by their inability to support people with intellectual disability,” he said. “We recommend organisations develop manuals containing guidance on how to support individuals through early, mid and end-stage palliative care, to improve their experience. Government funding models also need to be adapted to better meet their needs; everyone is just passing the buck to someone else.
“We should be trying to maintain the maximum quality of life for as long as possible, yet people with intellectual disability undergoing palliative care in a rural community can feel very isolated. A civilised society is one that looks after its vulnerable, and someone with a lifelong intellectual disability that is dying is about as vulnerable as you can get.”
