Attention to psycho-existential suffering in palliative care is clearly needed

Patients with unrecognised psycho-existential suffering including depression, unaddressed demoralisation and unabating anxiety account for some of the most vulnerable patients in palliative care.

Psycho-existential symptoms are common yet often missed or neglected by a biomedical ethos in some services. With limited access to skilled staff and evidence-based management, this results in as many hospital admissions and extended lengths of stay as unmanaged physical symptoms. These patients are in dire need of treatments to optimise their adjustment and prevent suicidal thinking. Screening can be an effective way to recognise and respond to this need.

A new education and knowledge translation project led by Professor David Kissane AC for Cabrini Health, The University of Notre Dame Australia and the Cunningham Centre at St Vincent’s Sydney, has successfully implemented the Psychoexistential Symptom Assessment Scale (PeSAS) screening tool into routine use across 18 leading services in all states and territories.

Funded by a $1.05 million Australian Commonwealth Department of Health Palliative Care National Program grant, Prof Kissane led the development of the PeSAS screening tool, which uses six items to assess demoralisation and existential concerns and four items to assess other psychosocial issues.

COVID-19 restricted the early phase of the project, but PeSAS screening was implemented across six palliative care services in Victoria, New South Wales and the Australian Capital Territory in 2021. More than 216 clinicians (nurses, physicians and psychosocial health providers) were trained and upskilled on how to explore and discuss psycho-existential symptoms, and treat or refer to appropriate expertise. Data so far, collected from 1405 patients, has demonstrated just how large the problem is and the dire need for recognition, with more than one third of palliative care patients experiencing significant occurrences of psycho-existential symptoms, including anxiety (41.1%), discouragement (37.6%), hopelessness (35.8%), pointlessness (26.9%), depression (30.3%), and the wish to die (17%). As 2022 unfolds, more than 500 palliative care clinicians have been trained and the program is gaining strength.

Other key findings from the first report were:

• Clinicians, as a result of experiential roleplay exercises, grew significantly in confidence in assessing psycho-existential wellness in patients.

• Therapeutic strategies to restore hope and meaning will be central alongside management of anxiety and depression.

• Use of an implementation committee, engagement of site leadership, use of electronic recording of PeSAS and the development of local champions have proved helpful.

• When a biomedical tradition and pharmacological orientation prevailed, introduction of PeSAS was slower.

• The model is not generalisable, as each service has needed to identify and address local issues, a well described challenge of implementation programs.

• Implementation barriers included the prior ethos of the service, confidence in talking about these themes, electronic data entry and perceived time pressures.

The national implementation project is still in the rollout phase across Australia, due to be completed by the end of 2023. Future work will focus on the important, key long-term objective of program maintenance.

Prof Kissane said of the project, “We are grateful for this opportunity to upskill palliative care clinicians across Australia to better recognise suffering presenting as psycho-existential distress and help them to build skills to address this more effectively.”