Aussies avoiding what matters most in last stage of life
Experts are issuing a public health plea for improved communication, acceptance and preparation for last stage of life.
Of the 160,000 Australian deaths recorded each year,1,2 more than 60 per cent (100,000) are predictable, and can therefore, be planned for.1 Yet concerningly, less than one in six Australians (15 per cent) have care plans in place for the last stage of life,3 and while 70 per cent of Australian’s prefer to die at home, or in a home-like setting,4 currently less than 14 per cent are doing so.5
According to an article just published in MJA Insight+6, lack of acceptance, planning and ineffective communication means that all too often, the attitudes and preferences of a person in the last stage of life, are neither discussed, understood, or championed.
“Australians on the whole, don’t talk openly about death and dying. The topic makes people uncomfortable,” said Professor of Intensive Care and The Violet Initiative Clinical Committee member, Professor Ken Hillman, AO, Sydney.
“Currently, death and dying is highly medicalised. Often, the preferences of the person in the latter stages of life are not acknowledged. Their priorities usually include a desire for personal care, safety, assurance, company, preservation of dignity, and a peaceful, pain-free death. Instead, health professionals focus on their own priorities, which are active medical management and attempting to cure.”
The just published article explains how Australian social enterprise, The Violet Initiative (Violet), is striving to build resilience, and to reduce regretful outcomes for those in the last stage of life (due to frailty or terminal illness), and for their caregivers and families. The article’s co-authors are calling for systemic change across all areas of the community, health care and aged care sectors, to build awareness, improve planning, and bridge the communication and support gap that is vital to this important life stage.
Social Entrepreneur and Violet CEO, Ms Melissa Reader, NSW, maintains caregivers are often the key influencers and decision makers – those able to drive critical conversations, and advocate for a plan that marries their loved one’s desires, with the reality of their situation.
“Often caregivers and family members of those in the last stage of life feel uncertain, unprepared, and unsupported in respecting the wishes of the dying.
“By positively impacting the last stage of life, Violet’s early intervention system enables people to build resilience, reduce regret, be better prepared to die well, and also helps those in the last stage of life, and their loved ones, to best maximise, and enjoy, their time together,” Ms Reader said.
“A "good” last stage of life would involve many more Australians having more compassionate and dignified deaths, with their preferences aligned with their experiences. Families and their caregivers would be offered relief, feel more resilient while going through this difficult experience, and in turn, would be able to return to life and work more fully.”
The cost of regretful outcomes in the last stage of life is substantial,2,7-9 and is predicted to rise, given the number of individuals who die each year is set to double in the next 40 years.1
An average of 33-38 per cent of patients in the last stage of life receive non-beneficial treatments (NBTs).10 NBTs are defined as any futile treatments, procedures or tests administered to older patients who are dying naturally, which will not influence their survival, will likely impair their remaining quality of life, and potentially cause them pain, and prolonged suffering, or leave them in a worse state of health than they were, pre- hospital admission.11,12 Non-beneficial admissions represent more than 12 per cent of total hospital admissions, and are often driven by complex family dynamics and poor communication.11
Animal lover, mother and artist, Janet, 59, Sydney, reached out to Violet last year. Janet spent nine years caring for her then ex-husband, Ian, through the final years of his life. Although Janet and Ian were no longer married at the time, they nonetheless remained close friends. When Janet learned of Ian’s illness, she invited him to live with her, to ensure he had company through the last stage of his life. This proved highly challenging for Janet on many fronts, especially having to navigate the healthcare system on Ian’s behalf, while striving to respect final wishes. 2
About The Violet Initiative
Violet’s mission is to help Australian’s experience more compassionate and dignified deaths, by offering targeted and complementary, non-clinical support to the professional and informal caregivers for someone in the last stage of life. Violet reduces regret by helping people change behaviour through open acceptance, thorough planning, and effective communication.
Today, armed with 30 years of practical, community-based experience, and insights, Violet provides a unique range of services designed to reduce the burden associated with the last stage of life on caregivers, families, and the healthcare system.
If you are caring for someone in the last stage of life, or wish to learn more about The Violet Initiative and its service offering, head to www.violet.org.au or call 1800VIOLET.
1. Palliative Care Australia, Palliative Care 2030 – Working towards the future of quality palliative care for all. 2018: PCA, Canberra.
2. Palliative Care Australia & KPMG, Investing to save - The economics of increased investment in palliative care in Australia. 2020.
3. White, B., et al., Prevalence and predictors of advance directives in Australia. Intern Med J, 2014. 44(10): p. 975-80.
4. Higginson, I.J., et al., Dying at home--is it better: a narrative appraisal of the state of the science. Palliat Med, 2013. 27(10): p. 918-24.
5. Serissen, H., & Duckett, S., Grattan Institute, Dying well. 2014.
6. Eagar K., et al. A question worth asking: what matters most at end of life? 2021 [cited April 2021]; Available from: https://insightplus.mja.com.au/2021/14/a-question-worth-asking-what-matters-most-at-the-end-of-life/.
7. The Violet Initiative, Data on file. 2020.
8. Rosenwax, L., K., McNamara,B,A., Murray,K., McCabe,R,J., Aoun,S,M, & Currow,D,C., Hospital and emergency department use in the last year of life: a baseline for future modifications to end-of-life care. 2011.
9. Goldsbury, D.E., et al., Acute hospital-based services used by adults during the last year of life in New South Wales, Australia: a population-based retrospective cohort study. BMC Health Serv Res, 2015. 15: p. 537.
10. Carter, H.E., et al., Factors associated with non-beneficial treatments in end of life hospital admissions: a multicentre retrospective cohort study in Australia. BMJ Open, 2019. 9(11): p. e030955.
11. Carter, H.E., et al., Incidence, duration and cost of futile treatment in end-of-life hospital admissions to three Australian public-sector tertiary hospitals: a retrospective multicentre cohort study. BMJ Open, 2017. 7(10): p. e017661.
12. Nelson, C.M. and B.A. Nazareth, Nonbeneficial treatment and conflict resolution: building consensus. The Permanente journal, 2013. 17(3): p. 23-27.
13. Palliative Care Australia, G., Bereavement and Mental Health, Palliative Care and COVID-19. 2020.
27 April 2021.