Advances in medicine have enabled people with long-standing congenital or acquired physical disabilities to live and live longer despite experiencing 4-13 potentially life-limiting secondary conditions per year. [1] For this reason, consideration of end-of-life care needs will become progressively complex for increasing numbers of adults with multiple severe disabling conditions as well as their families, paid support workers and clinicians. [2] The combined effect of age-related changes coupled with disability, and aged or absent parents, may increase complexity in managing end-of-life care for this group. While end-of-life care should be readily accessible for this group, as indeed palliative care is increasingly touted as 'everyone’s business', [3-4] the care needs of people with significant physical disabilities arguably adds an additional layer of complexity to such care. Factors such as past experiences of disenfranchisement, prejudice and devaluation, reduced self-determination, very specific disability related co-morbidities, reduced family support and communication difficulties may place people with disabilities at heightened vulnerability during this period. [5] 

Indeed, recent research focusing on perceptions of people with serious physical disabilities toward Advance Care Planning (i.e. plans around future healthcare) found that the influence of past medical encounters and episodes of discrimination impacted on willingness to make care decisions, with participants expressing a lack of trust in medical practitioners to have their best interests at heart. [1] Calls for appropriate and sensitive end-of-life care which considers the needs of people with long-standing physical disabilities have been heard but not addressed for more than a decade. [1] Some reasons for this might be societal taboo around conversations about death and dying and/or paid support workers or families feeling uncomfortable talking about such issues with the person with disability. [6]

An essential starting point to redress this shortfall is to examine the complexity of needs and issues facing people with long-standing physical disability, and the challenges for family members as well as paid support workers. Given that most people with serious and long-standing physical disability tend to reside in supported disability accommodation it is vital to determine the needs and experiences of paid support staff in addition to those of the individual and their family members. These staff are often involved directly or in an incidental role in discussions or events surrounding end-of-life care and decisions about when to seek medical care for potentially life-threatening conditions. [6]

Issues impacting end-of-life care for people with cognitive impairment such as intellectual disability [7] and dementia [8] have been well documented. Similarly there has been some work examining experiences of people with neurological disorders such as Parkinson’s Disease [9] and Motor Neurone Disease, [10] yet comparatively little is known about issues for people with long-standing congenital or acquired physical disabilities such as cerebral palsy, traumatic spinal cord injury, or acquired brain injury.  While there is some emerging work focusing on perceptions of Advance Care Planning among people with physical disabilities [1] to the best of our knowledge there is no research which has focused on end-of-life care needs.

Our team based in the College of Nursing and Health Sciences at Flinders University, including lead researcher Dr Ruth Walker, Associate Professor Pammi Raghavendra (both from Disability and Community Inclusion) along with Kim Devery, Dr Deidre Morgan and Deb Rawlings (Palliative and Supportive Services) have recently been awarded a Flinders Foundation Health Seed Grant to explore the specific needs of people with physical disabilities who are at the end-of-life, as well as the needs of their families and the support staff who help care for them. Through a series of personal interviews and focus groups, our team will investigate the physical, psychological, social and spiritual needs of people with long-standing disabilities as they approach end-of-life. Disability support staff will be asked about the main issues and barriers to the provision of proper care, and family carers will be interviewed about the needs of the patients and their own needs as end-of-life approaches.

Our research will help inform appropriate and sensitive palliative and end-of-life care which considers the needs of people with long-standing physical disabilities, their families and disability support staff.

If you would like more information about this study, please contact ruth.walker@flinders.edu.au

References

1. Mitchell SE, Weigel GM, Stewart SK, Mako M, Loughnane JF. Experiences and perspectives on advance care planning among individuals living with serious physical disabilities. J Palliat Med. 2017 Feb;20(2):127-133. doi: 10.1089/jpm.2016.0168. Epub 2016 Nov 3.
2. Volker DL, Divin-Cosgrove C, Harrison T. Advance directives, control, and quality of life for persons with disabilities. J Palliat Med. 2013 Aug;16(8):971-4. doi: 10.1089/jpm.2013.0008. Epub 2013 Jun 25.
3. Abel J, Kellehear A. Palliative care reimagined: a needed shift. BMJ Support Palliat Care. 2016 Mar;6(1):21-6. doi:10.1136/bmjspcare-2015-001009
4. Rosenberg J. Whose Business is Dying? Death, the Home and Palliative Care. Cultural Studies Review. 2011 Mar;17(1):15-30. doi.org/10.5130/csr.v17i1.1971           
5. Stienstra D, Chochinov HM. Vulnerability, disability, and palliative end-of-life care. J Palliat Care. 2006 Autumn;22(3):166-74.
6. Stienstra D, D'Aubin A, Derksen J. Heightened vulnerabilities and better care for all: Disability and end-of-life care. Palliat Support Care. 2012 Mar;10(1):17-26.
7. Voss H, Vogel A, Wagemans AM, Francke AL, Metsemakers JF, Courtens AM, de Veer AJ. Advance Care Planning in Palliative Care for People With Intellectual Disabilities: A Systematic Review. J Pain Symptom Manage. 2017 Dec;54(6):938-960.
8. Givens JL, Sudore RL, Marshall GA, Dufour AB, Kopits I, Mitchell SL. Advance care planning in community dwelling patients with dementia. J Pain Symptom Manage. 2018 Apr;55(4):1105-1112. doi: 10.1016/j.jpainsymman.2017.12.473. Epub 2017 Dec 14.
9. Boersma I, Jones J, Coughlan C, Carter J, Bekelman D, Miyasaki J, et al. Palliative Care and Parkinson's Disease: Caregiver Perspectives. J Palliat Med. 2017 Sep;20(9):930-938. doi: 10.1089/jpm.2016.0325. Epub 2017 May 18.
10. Foley G, Timonen V, Hardiman O. Exerting control and adapting to loss in amyotrophic lateral sclerosis. Soc Sci Med. 2014 Jan;101:113-9. doi: 10.1016/j.socscimed.2013.11.003. Epub 2013 Nov 1
     

Dr Ruth Walker, Head of Teaching Section (Applied Gerontology) and Senior Lecturer (Disability and Community Inclusion), College of Nursing and Health Sciences, Flinders University