Living with dying
A blog post written by Jan Obery, Senior Social Worker, Central Adelaide Palliative Care Service
I am sure that I am not unique in having had the response “oh, you must be special” to questions regarding my work as a Palliative Care Social Worker of 19 years. I am not. One of the most satisfying aspects of working in palliative care is that; whilst we cannot prevent death or dying, (because we are good, but not Gods,) we can make a significant difference to those living with a life-limiting illness. All of those who work with people who are living with dying, can make a difference to how that dying happens and to the experience of loss and bereavement for the loved ones of those who have died. This frames social work within palliative care and indeed the roles of all of the interdisciplinary team as proactive in end-of-life care; a dynamic shift from the historical consideration that the bestowal of a ‘terminal diagnosis’ and a referral to palliative care meant that ‘nothing is to be done’.
Death is one of the most powerful of human experiences. As such, it has been a source of fascination to philosophers and theologians, artists, and scientists throughout the ages. The ways in which physical, social, psychological, ethical and spiritual issues interact in death and dying demanded that those working in healthcare have a broad understanding of the relevant issues. Palliative care as a medical specialty was recognised in 1987. 
Palliative care is distinct from most other medical specialties in that the ‘family’ (loosely defined as whomever the patient deems to be family) is considered the ‘unit of care’. In practice this means that person-centred care becomes family-centred care with the patient at the centre, in part this is in recognition of the role of family as primary caregivers throughout the course of the end of life. Historically when there was no further treatment available the family and community stepped in to provide care to the dying and their family, with perhaps, supportive visits from the local doctor or community elder. The medicalisation of palliative care as a specialty has facilitated the development of a palliative care workforce which includes nurse specialists and allied health teams with a focus on maximising living at the end-of-life. Social workers with our training in systems theory are uniquely positioned to interpret and ameliorate the impact of loss on the broader systems within the context of which the patient/ carer exists. The ‘living with dying’ is happening in the context of an everyday life with all its everyday stresses and joys.
Erik Erikson describes the last stage of development through the human life cycle as Ego Integrity vs Despair, typically occurring at age 65+.  This is categorised as a time of reflection, review of one’s life achievements and regrets; enabling meaning-making, and theoretically at least, the achievement of wisdom. The diagnosis of a life-limiting illness often catapults the patient and their family into this phase. One focus of social work engagement can be in facilitating this process of life review. Dignity Therapy is one useful therapeutic intervention which can be utilised, addressing psychological, spiritual and emotional domains of care. Psycho-education and advocacy are crucial in assisting patients and carers to make informed decisions, and in alleviating the impact of financial and carer stress. Social workers assess the ‘whole’ person and our role within the palliative care team is to highlight this perspective to enable the patient/person to be known in a way that facilitates their dying being congruent with their living values.
- Small N. Critical Commentary: Social Work and Palliative Care. Br J Soc Work. 2001 Dec;31(6):961-71. Doi: 10.1093/bjsw/31.6.961
- McLeod SA. Erik Erikson's stages of psychosocial development. Simply Psychology. 2018 May 3.
- Palliative Care Australia (PCA). National Palliative Care Standards. 5th ed. Canberra: Palliative Care Australia; 2018.
Jan Obery, Senior Social Worker, Central Adelaide Palliative Care Service