Andrea Grindrod, Dr Michele Wiese, Anna Holliday and Maria Heaton
There is broad consensus that end-of-life care offered to people with intellectual disabilities (ID), and other vulnerable populations, should be of a quality consistent with that advocated by contemporary palliative care. In practice, however, various systemic barriers are encountered that result in the absence of choice for people with ID and poor end-of-life outcomes, reflecting the inequitable life circumstances of living with a disability. “In her mid-forties, after a lifetime of forced institutionalised living as a Ward of the State, Rosie had her own room for the first time in her life. She could arrange it as she liked and decorate it as she wanted. She kept her things well organised, her clothes and her jewellery, and she was particular about the way she wore her bangles and beads and pearls: they had to sit outside her cardigan…She could now choose which chair to sit on and which couch to lounge on – a transformation in her life. She liked pink clothes and could choose these. And she could read, write and draw…” Rosie was one of the lucky ones. With no family contact since birth, her committed disability care staff, supportive friends and palliative care services cared for her, so she could die in the bed that she loved so much, her own. Rosie’s dying experience is not typical of those with intellectual disabilities, whose vulnerabilities mean that familiar people and surroundings is even more important than it is for most. This symposium reports on an emerging Public Health Palliative Care national collaboration in Australia to privilege the voice of people living with intellectual disability, to reorient the systems that fail them and to challenge the systemic barriers faced that result in poor outcomes at the end of their lives.
Dying without a Voice: A case for the role of public health palliative care in advocating for equitable end-of-life care outcomes for structurally vulnerable populations
Theme: Diversity and Inclusion Background Following de-institutionalisation reforms in Australia in the 1980s, many people with intellectual disabilities were relocated into ‘home-like’ residential settings. A public health approach recognizes that wellbeing, including wellbeing at the end of life, is generated and shaped by where we live, work, learn and socialize. This has implications for how and where people with intellectual disabilities experience the end of their lives. Informed by social justice and concern with equity of access to resources, public health offers a framework to challenge structural barriers affecting decision-making and quality end-of-life care.
Aim Structurally vulnerable populations, such as people living with intellectual disability, have less opportunity to independently engage in community activities, such as those generated through the Compassionate Communities approach. This research aimed to investigate and develop an evidence-based public health strategy, using an asset-based design, to improve the end-of-life care outcomes of those dying with a disability. Design Staff attitudes to providing end-of-life care to residents were explored through a survey (n=141) while focus groups (n=26) elicited experiences. Integrated data analysis identified sector assets and barriers that impacted upon practice.
Results The process resulted in the development of an asset-based partnership strategy, designed to systematically involve people with disability on matters concerning their own death. At the study site, people with disability were beginning to die at ‘home’ supported by disability staff and palliative care services. Within the disability sector, sustainable capacity and leadership continues.
Conclusion This specific application of public health approaches to meet the needs of people with intellectual disability serves as a case study for other structurally vulnerable populations. Principles include the role of public health to privilege the voice of under-served populations, the methodology to reorient systems that fail them, and the strategies that challenge the systemic barriers that result in poor end-of-life outcomes.
Disability and end of life; perspectives, insights and lived experience
Background In 2016, anecdotal evidence suggested Tasmanian disability services were not considering end of life care proactively for people they supported. As a result, people with intellectual disability were being transferred to unfamiliar environments (aged/acute care) at end of life when continuity, familiarity and security are vital.
Aim Li-Ve Tasmania’s foundational research asked Tasmanian’s with intellectual disability, and those who support them, to share their insights, perspectives and experiences regarding end of life and bereavement. It was intended to use the insights to contribute towards the service quality enhancements. Actions Participants (N=110) were people with disability, their families/friends and service providers who contributed via individual interviews or small discussion groups.
Outcomes Findings showed Tasmanians with disability feel confused, uninformed, isolated, and excluded from treatment planning, prognostic conversations, and were not connected with palliative care services in a timely manner. Families and service providers report a lack of confidence and capability to engage in the topic of death and dying. This research highlighted a need for a practical, cultural and systems-based approach to enhancing the opportunities for people with disability to access and participate in palliative care, and ultimately “healthy” end-of-life experiences. Li-Ve Tasmania responded by focusing on community collaboration and capacity building approaches, resulting in significant and sustainable changes within the Tasmania service system for people with disability.
Conclusions and applications to PHPC It’s time for people with disability to be included and valued for the contributions they offer to their own end-of-life care and others they care about. Inclusive palliative care is everybody’s responsibility. Understanding the experiences, barriers and opportunities for supporting people with disability in the context of palliative care is critical. An inclusive Public Health Palliative Care framework offers a systemic guide to improve the outcomes for people with disability at end of life in Australia.
Supporting people with intellectual disability to understand the end of life: The “TEL” website practice example
Dr Michele Wiese
People with intellectual disability have a right to understand the end of life. Unfortunately though, they may be prevented from learning about it, often through well-intentioned but misguided protection. This translates to limited opportunity to care for loved ones who are dying, or to participate in ritual and remembrance. It also means decreased ability to plan for and make decisions about their own dying and death, should they choose to do so.
Our team developed a world-first free online resource Talking End of Life (TEL) …with people with intellectual disability (TEL). It is a knowledge translation of the Australian research study “Dying to Talk”, a project evaluating the effects of teaching disability support professionals to have conversations about the end of life with people with intellectual disability.
While TEL’s primary audience is disability support professionals, it has relevance for health professionals, families and, with support, people with intellectual disability. TEL comprises 12 learning modules, which can be completed independently or as part of a group. Each module includes case studies, activities, and video. All videos feature people with intellectual disability and disability support professionals, and case studies are based on real-life experiences.
TEL aims to give disability support and health professionals the knowledge, skills, and confidence to help people with intellectual disability understand and plan for the end of life.
Conclusions and application to PHPC
Encouraging conversations about the end of life means that when people with intellectual disability gain understanding, they can honour the dying and death of those they care about. It also supports exercise of the right to make choices about the manner of their own dying.
Support needed for a loved one to die at home
I am a paediatric palliative care clinical nurse consultant and I had two children with a rare brain disorder called Lissencephaly. My family chose to have both of them die at home in a familiar environment surrounded by family. My daughter died in 2003 and my son died in 2014, the differences in support were immense. There were cuts to the services that were provided so that the support that our family received in 2014 was far lower than the support that we received in 2003. I would like to present our family’s journey and the impact that these funding cuts had on us and on our son. Having a loved one die at home is a highly emotional and stressful time and for the sake of all involved including the person who is dying, it is important to enable them access to the support that is needed in order for this to be well managed. Kiyanda (2015) refers to the need for 24 hour access to support. In a blog about dying at home there is reference to finding a balance in the caring and quality of life interventions that family provide to the person who is dying. It is so important to get the balance right (Seliger 2013) so that a family can feel that they provided the best care possible and for them to manage in the bereaved period.
Reference: • Johnston, J The Memories Project blog 2012 https://thecaregiverspace.org/dying-home-not-cracked/ • Seliger, S 2013 Caregiving, Hospice and Palliative Care, Newswire https://www.lifemattersmedia.org/2013/01/dying-at-home-may-be-more-difficult-than-expected/ • Kiyanda, B.G.Can Fam Physician. 2015 Apr; 61(4): e215–e218. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4396781/