A question worth asking: what matters most at end of life?

MANY Australians aren’t having the end-of-life experience they want or deserve.

Seventy per cent of Australians would prefer to die at home or in a home-like setting. But the last generation where most people died at home was that of our grandparents. Today, about half of us will die in hospital.

There is an urgent need to recognise, talk about, and prepare for the last stage of life. The Violet Initiative estimates more than half of the 100 000 predictable deaths in Australia each year have regretful outcomes, when things don’t go to plan, or there is no plan.

Regretful outcomes at the end of life come at significant cost, and an even greater human one, often as a result of uncertainty, lack of planning and preparation, rushed decision making and poor communication.

Currently, only 15% of Australians have an Advanced Care Plan. In the last 12 months of life, many hospitalisations are unwanted or unnecessary and, on average, a person spends 33 days in hospital. Family dynamics often drive non-beneficial treatments, noting that of all those in the last stage of life, 33–38% will receive non-beneficial treatments.

This is compounded by the increasing cost of moral distress and workforce burnout among those whose work is associated with the last stage of life. This gap between preferences and experience also has an impact on those we leave behind. According to a 2017 study, 20% of Australians are unable to “move on” after the death of a loved one.

• Podcast with Melissa Reader and Professor Ken Hillman

The increase in hospitalisation at the end of life over the past 50 years is largely due to the emergence of technology in medicine and the increasing role of intensive care. Today, many of the people we see in the intensive care unit are aged in their 80s and 90s and in the last weeks, sometimes days, of their life. With annual deaths set to double by 2040, the time to tackle the issue of awareness, communication and preparation is now.

The shift from home to hospital brought with it a decline in community awareness of death and dying, creating a gap in communication and support through the last stage of life. A lack of dialogue around death and normal functional decline means families are often ill-prepared for the last stage of life, and the normal processes of dying. Often simply explaining normal functional decline – that we lose skills in the reverse order to which we acquired them in childhood (as stated in part one and part two of this study) – can alleviate undue stress for the patient, their carer and their family, alike.

Among the elderly and frail, the absence of communication and preparation has meant our default has become hospitalisation, when, in fact, in most cases hospital is not the preferred option of people at the end of life. The government’s recent Productivity Commission and Royal Commission into Aged Care Quality and Safety have raised public awareness of the issues of regretful outcomes in the last stage of life, and reinforced how urgently end-of-life communication is needed, especially among residents and family members of those in an aged care setting.

People are entering aged care facilities later, with higher acuity, and with multiple comorbidities. In fact, one in three people (34%) in residential aged care will die within their first 12 months of residence (Eagar K, unpublished Analysis of the Australian Institute of Health and Welfare GEN Aged Care Data 2019–2020).

For the frail elderly, the medical system’s focus on treatment often means there is a lack of focus on end-of-life care, where the goal of care is maximising the person’s quality of life and making the most of the time left. Studies have shown that the earlier support is provided in the last stage of life, the smoother an individual’s transition through it. Yet services like specialist palliative care are, on average, only accessed by 25% of people, (Eagar K, November 2019, “Creating the future: outcomes past, present and those to come,” Keynote address, Inaugural PCOC Outcomes and Benchmarking International Conference, Darling Harbour Sydney) and commonly accessed in the last 60 days in the community, 10 days in inpatient palliative care units, and only in the last 72 hours on acute hospital wards.

All areas of the health care system that intersect with the last stages of life have a role to play in building awareness, encouraging planning and facilitating communication. But it starts in the community, not upon arrival in emergency. This includes discussions about how our bodies, mental health and lives might change as we deteriorate with age and increasing frailty or due to a life-limiting illness.

GPs are well positioned to support these conversations in the community, given their often long term patient relationships. They can also play a vital role in the process of advanced care planning. Unfortunately, there are fundamental challenges with GPs providing support through the last stage of life. While many would like to provide more end-of-life services, including advance care planning, they are currently not reimbursed for initiating these complex discussions. Without systematic change, it is unlikely these discussions will occur.

But GPs should not be the only facilitators of these discussions. Communication about the last stage of life needs to occur within our communities, from families and aged care staff, to people on the acute medical ward, and in outpatient departments. Empowering people to talk about their priorities, attitudes and beliefs, in conjunction with their treatment options, and to document those preferences, is fundamental to delivering optimal end-of-life care.

Facilitating that empowerment is the Violet Initiative (Violet). Violet is a social enterprise that strives to make a positive impact on the last stage of life, to build resilience, encourage communication and reduce regretful outcomes. By so doing, Violet helps those at the end of life, and their loved ones, make the most of their time together.

Violet is calling for these three changes to the last stage of life in order to reduce regretful outcomes and to ensure more Australians die with dignity and compassion:

1. The last stage of life is, and should be, recognised as a life stage. We need to talk about it, plan for it, and be supported through it.
2. All predictable deaths (100 000 per annum) will go through the last stage of life, whether frailty or terminal illness brings them there.
3. The last stage of life is a human experience, with clinical and non-clinical needs. Both need to be adequately addressed. We should strive to better educate, prepare and support people in this life stage, and those around them.

Acknowledging the last stage of life as a real and important life stage, and decoupling end of life conversations from the cessation of curative treatment and a prognosis of death, ensures communication and planning around values and preferences begin. While societal taboos, and in some cases cultural practices, limit when and how these conversations occur, we must still find a way to help people prepare for what lies ahead. Perhaps the answer lies in talking more openly about life and living, and what matters most to each of us.

Professor Kathy Eagar is Director of the Australian Health Services Research Institute, University of Wollongong. She has over 35 years of experience in the health and community care systems during which she has dedicated to being a clinician, a senior manager and a health academic. Professor Eagar has significant expertise in the design and management of large, multidisciplinary research and evaluation projects, and has undertaken several large and complex health service research projects. She is an Honorary Fellow of the Australasian Faculty of Rehabilitation Medicine, and board member of the Australian Healthcare and Hospitals Association.

Professor Ken Hillman, AO is Professor of Intensive Care, and Foundation Director of the Simpson Centre for Health Services Research at the South Western Sydney Clinical School, University of New South Wales. Professor Hillman pioneered the “medical emergency team” (MET) – a multidisciplinary team of hospital-based doctors and nurses with advanced life support skills, who recognise and respond early to the deterioration in a patient’s clinical condition. Professor Hillman is partnering with the Clinical Excellence Commission to roll out the MET to every hospital in New South Wales as part of its “Between the Flags” program.

Dr Leeroy William is an Adjunct Associate Professor at the Eastern Health Clinical School at Monash University, Melbourne. His medical career spans over two decades across the United Kingdom, New Zealand and Australia. He currently serves as President of the Australian and New Zealand Society of Palliative Medicine, in addition to his role as Clinical Director of Supportive and Palliative Care at Eastern Health.

Melissa Reader is the Managing Director and CEO of the Violet Initiative. Melissa assumed the role of CEO in 2018, to lead the transformation of the community-based 20th century charitable organisation, LifeCircle, into what Violet is today – a 21st century social enterprise with a national agenda, tackling one of society’s most complex and often taboo issues. Melissa harnesses her professional expertise in purpose-led creative strategy, human-centred design and adaptive leadership, as key responses to creative problem solving and change. She is committed to exploring ways of working differently, from mobilising new models of working, and sustaining large programs of change and reform, to embedding resilience, capability and capacity in individuals and across systems.

The statements or opinions expressed in this article reflect the views of the authors and do not represent the official policy of the AMA, the MJA or InSight+ unless so stated.