The burden of appetite-related distress in the last 60 days of life
A blog post written by Dr. Mariana Sousa, an author from our Latest Australian Research series
People with end-stage illnesses typically have a high symptom burden. They often experience multiple distressing symptoms that can impact on quality of life and clinical outcomes. Relief of such symptoms is a core function of palliative care. Loss of appetite (anorexia), early satiety, food aversions, changed tastes and reduced food intake are very common symptoms in this population and frequently linked to patient and family distress.
There is consensus that nutritional care should be part of a holistic multimodal and multidisciplinary approach in order to assess any reversible nutritional needs of people with advanced, progressive illnesses. Lack of appetite and subsequent weight loss and nutritional deficiencies in patients receiving palliative care can lead to poor functional and clinical outcomes and therefore, should be routinely assessed and regularly reviewed throughout the disease trajectory to allow intervention at an earlier stage. Despite these recommendations, poor appetite is often dismissed by clinicians as an expected consequence of an advanced, progressive illness and little is currently known about the patterns of appetite-related distress experienced by patients towards the end of life.
The IMPACCT Centre, in collaboration with Palliative Care Outcomes Collaboration (PCOC), analysed 359,038 data points of people who used 203 Australia-wide specialist palliative care services between 2013 and 2018. The main focus of our study was to investigate patterns of, and associated factors to, appetite-related distress in the last 60 days of life in a consecutive cohort of people receiving palliative care.
The published paper summarises the degree of patient-perceived distress caused by reduced appetite in this national cohort of people receiving palliative care in the final two months of life. Findings are presented by diagnostic cohorts (cancer, end stage organ failure, neurodegenerative diseases, dementia and other non-cancer diagnoses) and palliative care service settings (community and hospitals) and show that appetite-related distress is burdensome across the five diagnostic groups analysed and varied from mild to moderate. Interestingly, it was observed that mean scorers for appetite-related distress diminished closer to death (7-10 days). There were no significant differences in appetite-related distress reported by the two clinical settings. Finally, a strong association between appetite-related distress and nausea- and bowel-related distress was also noted, reflecting the likelihood of presence of a multiplicity of other symptoms in people with life-limiting illnesses.
Our study highlights the importance of routine clinical assessment and longitudinal review of appetite-related distress in people receiving palliative care. These should also alert practitioners to other symptoms that may be distressing.
More progress is sorely needed to make appetite-related distress assessment a more universal practice in palliative care settings. Identifying at-risk patients and initiating preventative measures may reduce adverse outcomes and improve functional status.
Dr. Mariana Sousa
Chancellor’s Postdoctoral Research Fellow,
IMPACCT - Improving Palliative, Aged and Chronic Care through Clinical Research and Translation Centre,
University of Technology Sydney.
https://www.centreforpallcare.org/
Reference:
Sousa MS, Davis W, Blanchard M, Razmovski-Naumovski V, Agar M, Daveson B, Currow DC. (2022) Appetite-Related Distress Is Burdensome in the Last Sixty Days of Life of People Receiving Palliative Care: A National Longitudinal Consecutive Cohort Study. J Palliat Med. Apr;25(4):636-642. doi: 10.1089/jpm.2021.0462. PMID: 34978898. https://www.liebertpub.com/doi/10.1089/jpm.2021.0462