"There is a lot of fear about being a burden, of potential symptoms, of moving into nursing homes – psychologists can assist with these issues and particularly around discussions about things within and outside of clients’ control"– roundtable participant.
"Existing ethical principles within the profession provide sound guidance (around end-of-life care and choices), provided psychologists are clear about the law and their own moral and/or religious values" – Professor Alfred Allan.
"We don’t want to ‘skip dying and go straight to the deathing’ – we need to advocate for psychologists to be more involved in supporting death and dying through palliative care, death literacy training and for roles in supporting clients and their families during the end of their lives" – roundtable participant.
"Grief is a normal response to loss; it is individual and multidimensional" – Associate Professor Lauren Breen.
The APS End-of-Life Care and Choices Roundtable
With end-of-life choices legislation proposed for consideration in several states and in the media more widely, the APS Public Interest Advisory Group identified end-of-life care and choices as a priority area for 2017-18.
On Friday 13 October, 30 psychologists and others with relevant expertise came together at the APS National Office for the APS End-of-Life Care and Choices Roundtable. These included members from a recently convened reference group on end-of-life care and choices, representatives of relevant APS Colleges and Interest Groups including Psychology and Ageing, Christianity and Psychology, Rehabilitation and Psychology, Colleges of Health, Counselling, Clinical and Clinical Neuropsychologists, as well as contributors to the Australian Psychologist October 2017 Special Issue: Psychology and End-of-life.
Chaired by APS Executive Director Lyn Littlefield, the roundtable had an internal focus, providing an opportunity for the profession itself to start the conversations needed for us to participate fully in this sensitive public debate. A letter to the editor in the June InPsych stressed the need ‘for the APS to demonstrate strong leadership and initiative within an area largely excluded from the opinions of allied health professionals…’ (p. 22). Under consideration were the implications (and potential roles) for psychologists themselves of any moves to legalise assisted dying at state, territory or national level.
The roundtable involved an open but structured discussion to share knowledge and practical strategies. Three sessions each initiated by one or more speakers were followed by small group discussion on specific topics. The highly personal nature of this issue was evident throughout the day, with a number of participants drawing on their own personal and professional experiences of supporting clients, family members and others in their final stages of life.
Setting the scene for psychology’s role in end-of-life care and choices
Several speakers provided short presentations to stimulate discussion and assist the APS to crystallise a position on the subject of assisted dying.
Dr Sarah Edelman began by providing an overview of the proposed Voluntary Assisted Dying (VAD) laws in New South Wales and Victoria and their implications for psychologists. She outlined psychologists’ role in states where VAD may become legal, and where it might not, highlighting relevant parts of the APS Code of Ethics and providing some case examples to illustrate ethical versus legal obligations. She drew attention to a paradox between suicide prevention policy and protocol assumptions and the availability of (illegal) self-delivery methods, raising the question of whether and under what circumstances a person’s intention to end their life might be considered rational.
Issues associated with death, dying, bereavement and palliative care were then introduced by Mr Chris Hall and Associate Professor Lauren Breen, who spoke about end-of-life care with specific reference to implications for assisted dying. They pointed to the need for further public and professional understanding of the complex and individual nature of grief and bereavement, noting that little is known about the consequences of assisted dying for bereaved relatives. While the possibility of saying goodbye, the openness of talk about death and dying, and the fact that death is predictable could be protective factors reducing a family’s stress, bereavement following assisted suicide might also be associated with increased shame, regret, social stigma and a tendency to withdraw from others.
Dr Julie Bajic Smith used a powerful personal case study of her response to a client facing death alone in a residential aged-care facility to illustrate some of the issues associated with end-of-life issues in such settings. She highlighted the mental health and wellbeing needs of those involved, and pointed to the potential for psychologists to provide support and education to staff, residents and families during the end stages of a resident’s life and
Ethical concerns and legal responsibilities that psychologists need to be aware of to effectively work in this area were foregrounded by Professor Alfred Allan, who predicted that VAD legislation would be confronting for many psychologists. There are potential tensions between a practitioner’s contract with a client, their employment contract, their personal values, the Code of Ethics and the law. Respecting a client’s autonomy means that the client’s values take precedence over one’s own – but autonomy requires competence, which psychologists may be uniquely qualified to assess. According to Professor Allan, the ethical principles enshrined in our Code provide a sound basis for the profession, so long as psychologists are clear about the current law and their own moral and/or religious values – what they feel ‘is right and good to do’.
Associate Professor Chris Willcox completed the presentations by focusing on suicide in mental health services, and highlighted the inter-relationship between physical and mental ill-health, which has implications for suicide risk and end-of-life choices. Dr Wilcox referred to evidence that functional impairments and quality of life are greater influencing factors than the type of illness or its prognosis, and drew upon government data to show that a proportion of people who have died by suicide have previously experienced physical health problems which may have contributed to the death.
Guidance for psychologists: Understanding the issues
Roundtable participants then responded to a number of issues raised in the presentations, highlighting a range of roles for psychologists. There was consensus that psychologists have an important role in end-of-life care and choices which should be taken into account in any VAD legislation. Beyond assessment of mental health status and cognitive capacity (which can be complex), psychologists may be involved in supporting clients in accessing appropriate pain management and palliative care, facilitating conversations with individuals and families around end-of-life care and choices, and educating and supporting families and other health professionals on grief following bereavement.
Participants identified a need for all psychologists to be better equipped in professional development and training terms. Participants would like to see the APS advocate to the Australian Psychology Accreditation Council for better coverage of death and dying issues throughout the psychology curriculum and the APS, to collate and circulate current best practice approaches and provide and promote continuing professional development (CPD) in this field. Some roles might be more suited to particular fields of practice, such as clinical neuropsychology or family therapy, but whoever is authorised to participate at any point in assisted dying processes would need specialised training.
It was agreed that ethics are central here and should not be seen as separate to practice. To ensure psychologists can confidently engage with clients and families who are facing end-of-life choices, existing relevant ethical frameworks and guidelines need to be promoted (such as the APS Ethical guidelines for working with older adults) and the potential for a new Ethical Guideline specifically on end-of-life choices explored. There may be a need for some case studies to highlight the application of relevant ethical frameworks and the often complex issues involved, especially where ethical principles may be seen to conflict (e.g., conflicts between principles of autonomy versus care). Important, too, is understanding that different cultural groups may hold different values around death and dying (including Indigenous perspectives on assisted dying) which need to be taken into account.
Looking forward: Outcomes and the role of the APS
Roundtable participants agreed that the APS has a strong role to play, both in advocating within the profession for psychologists to become aware of and involved in this area, to promote the skills and expertise of psychologists in any VAD legislation, as well as contributing to public awareness of access to high-quality palliative care and informed choices around death and dying. Resources to assist the community in addressing fears around this life stage and highlighting appropriate services may also be something the APS could contribute.
Outcomes of the roundtable are expected to include CPD offerings and other resources to assist psychologists to navigate their potential roles in end-of-life care and choices. The contributions made by participants will now also inform the development of an APS position statement, as well as guidance (ethical and practical) for psychologists working in this area.
Video recordings of the presentation