End-of-life challenges in the 21st century 

18 August 2020

Article from July 2020 edition of INPractice

Dr Roger Hunt BM BS GDPH FAChPM MD, Senior Consultant,  Central Adelaide Palliative Care Service, shares his reflections on his career in palliative care.

As you near the end of a journey, it is natural to look back, to recall the highlights, and think about what it all means. Approaching the end of my working life, I’ve been looking back at my career in palliative care.

As a young graduate many years ago, I wondered how to choose a career path among so many different areas of clinical care. It now seems serendipitous that as a 26 year old in 1984 I took a locum position at Kalyra Hospital, Belair, which housed the first publicly funded hospice in SA.

I was ‘thrown in the deep end’, but nurses with experience in the care of terminally ill patients, and medical mentors, helped me learn. I discovered a rewarding fit with this work; to be a steady guide for patients and families, or at least just be with them, over terrain that could be emotional, dramatic, sad, harrowing, loving, interesting, challenging and, ultimately, fulfilling.

In 1988, when the Health Minister closed Kalyra Hospital and its pioneering hospice, many of us transferred to Daw House Hospice (at the Repatriation General Hospital), which became home for the world’s first Chair of Palliative Care.

Professor Ian Maddocks was appointed, and he led like a benevolent father; he inspired a truly multidisciplinary clinical team that was like a family. It was exciting to assist Ian launch university courses, to initiate the first national palliative care conference, to develop Palliative Care Australia, the ANZ Society for Palliative Medicine, and the specialty in the College of Physicians. Ian also seeded hospice development in the Asia-Pacific region.

Ian retired and was replaced. I learnt how much just one person in a key position could impact an entire work-place community. It was time for me to move on, and in 2003 I was appointed Head of Western Palliative Care.

Our team was efficient and effective, with mutual trust and respect.

Ten years later, into the ‘Transforming Health’ era, I found the bureaucratic functionary expectations annoying, so I passed on the managerial role to devote myself to clinical care, to nurturing the next generation of clinicians, and to pursuing my special interests.

A major research interest has been where people have died in SA, which culminated in a Doctorate of Medicine (by published work), titled ‘The Epidemiology of terminal care in SA’.

Death records revealed big picture change.

Prior to 1900 in SA over 90 per cent of deaths occurred in the home and community setting, mostly of infants and young people. As the twentieth century progressed, death was transferred from young to old, from infectious causes to ‘degenerative diseases of ageing’, and from the home/family setting to hospitals/professionals.

In the last part of the twentieth century, the shortcomings in hospital terminal care drove the emergence of the hospice movement which promoted terminal care in hospices and at home.

Over recent decades, more and more deaths have occurred in nursing homes (in SA there are now more cancer deaths in nursing homes than at home and in hospices combined); thus nursing homes have become ‘step-down’ or ‘slow stream’ hospices. End-of-life care is a labour-intensive nursing enterprise, however, requiring around 6.5 nursing hours per patient per day, and nursing homes fall far below this standard.

The ANMF to its credit has powerfully urged government to guarantee a basic ratio of bedside staffing for all nursing home residents.

Another special interest has been advance care planning. I became the Clinical Leader for the Respecting Choices Program in SA, and worked closely with an extraordinarily nurse, Marion Seale, who passionately educated, innovated, and promoted advance care planning in SA - she enormously increased the number of available plans. Sadly, Marion became ill and died in 2013. Around that time, a new Advance Directives Act and a new system for planning were introduced in SA.

I’ve also had an abiding interest in voluntary assisted dying (VAD). Initially, I had no fixed position, but bedside conversations soon swayed me in a certain direction. I met patients from all walks of life who expressed their thoughts and feelings about their dying and suffering, and some genuinely wanted a quick peaceful exit. There were occasions I was pressured to accede to their wishes. If a doctor, a nurse, or a family member were to assist in this situation then a prosecution for murder could ensue. Naturally, I saw the need for legislative reform.

In the 1990s when I came out in support of VAD, it felt like I stepped into a lions’ den because the palliative care community passionately resisted VAD.

The  ‘politically correct’ rhetoric was that all suffering could be managed, so there was no need for VAD, ‘killing’ patients was wrong and dangerous, and VAD legislation would undermine palliative care. I argued that even with the best palliative care, dying people suffered, some wished to have VAD, and compassionately acceding to their wishes would not undermine palliative care development.

My voice in the palliative care wilderness was heard by Marshall Perron, NT Chief Minister at the time, who invited me to give evidence to support development of his Rights of the Terminally Act, 1995. This Act was the first of its kind in the world, but it was soon overturned by the federal parliament. The growing weight of public opinion, however, combined with the persuasiveness of Andrew Denton and others, led to the successful passage of VAD legislation in Victoria in 2017 and WA in 2019.

In both these states, I was a member of the Ministerial Panel to consult and advise on legislation, along with a few other palliative care voices. The acceptance of VAD in palliative care circles had slowly grown over the years, which I feel sure it will continue to do.

The South Australian parliament through a committee chaired by Kyam Maher is currently considering VAD law.

Nurses can, and do, make excellent contributions to VAD discussions because they are at the bedside tending to the needs of the terminally ill and listening to them.

This is reflected in the ANMF Position Statement:
We support legislative reform so that competent adults who have an incurable physical illness that creates unbearable suffering shall have the right to choose to die at a time and in a manner acceptable  to them and shall not be compelled to suffer beyond their wishes.I’ve seen enormous changes in palliative care over the years. Hospice care in the 1980s could be caricatured as giving morphine and hand-holding. It’s become ‘medicalised’ as the range of therapeutics expanded, and investigations and interventions increased. It’s been pleasing to see the evolution of nurse practitioners in palliative care (e.g. Karen Glaetzer, Peter Jenkins, Kevin Hardy and Mark Millard) and their valuable contribution. along with so many nurses, should be lauded.

Palliative care has been increasingly called upon to assist with diseases other than cancer, including end-stage dementia and various organ failures. I’ve seen HIV / AIDS come and go as a cause of death. Now COVID-19 presents new challenges: Social isolation and PPE are barriers to compassionate, humane end-of-life care, and the exclusion of loved ones from the bedside of dying patients will have serious negative consequences in bereavement.

Click here to read the July 2020 edition of INPractice.