I’m in one of those jobs where it’s hard to explain to people what it is that I do every day at work and why I find it so very rewarding. My role is diverse and can be so different from client to client. But let me try and explain what I do as a speech pathologist working in paediatric palliative care, and why I love what I do!
What is speech pathology?
A speech pathologist is a university-trained health professional with expertise in the assessment and management of communication and swallowing disorders. This may mean working with clients who have difficulties including listening and understanding, speaking clearly or making their wants and needs known; and safely and comfortably eating and drinking. Speech pathologists work across the continuum of care from hospital to community and across the age spectrum from premature babies to geriatric care.
What is Paediatric Palliative Care?
Palliative care for children and young people is often quite different to what a traditional understanding of palliative care may be. As a result of advances in medicine, critical care and medical technology, many children and young people with life-limiting conditions are now living longer than before but with increasingly complex care needs. [1] This means that many of the children and families linked with paediatric palliative care service aren’t necessarily “palliating” or in the terminal phase of their illness, as we traditionally understand it. Paediatric palliative care encompasses all children who have a terminal or life-limiting illness.
For our paediatric population, palliative care can be defined as “an active and total approach to care … embracing (sic) physical, emotional, social and spiritual elements, and focuses on the enhancement of quality of life” (p. 9). [2] This means that we often have the honour of knowing and working with families for months, and sometimes years.
How does a speech pathologist work within paediatric palliative care?
The role the speech pathologist is an emerging area of practice in paediatric palliative care. [3] My job is to respond to any patient and family concerns regarding swallowing and communication. I need to do this whilst considering culturally appropriate care, stage of their palliative journey, likelihood of rehabilitation, comfort and quality of life. The three core tenets of my job as a speech pathologist are to keep eating and drinking as safe and comfortable as possible; allow my client (and their family) to understand, to the best of their ability, what is happening to them; and to support them to express their needs, wants and opinions in the most efficient way.
In optimising communication, my therapeutic role involves consulting with the child and family around how they are most comfortable communicating. Some of my patients may be non-verbal, have significant levels of fatigue or muscular disorders that don’t allow them to speak easily and efficiently. In these cases, I would explore alternative and augmentative communication (AAC). This may include basic sign language, communication through pictures, objects or touch and could extend to high-tech devices such as iPads or eye-gaze systems. In some cases, I require the support of the multi-disciplinary team to problem solve issues with positioning and access to these communication systems.
A lot of my work in paediatric palliative care, focuses on eating and drinking. Dysphagia (or difficulty swallowing) can be a symptom of many different life-limiting conditions and is often described as a natural step in the progression of disease. [4, 5] For some children, this may mean that food and drink enter their lungs while eating (aspiration). If this happens frequently or in large amounts, it can lead to other health complications and discomfort. It is important for me to recognise that the act of eating and drinking often provides much more than just nutrition and hydration. In some cultures, the preparation and giving of food holds healing properties. For children, feeding may symbolise the role of maternal nurturing and contribute to parent-child attachment. [6] For many of us, family events are celebrated at a table with delicious food and drink. As swallowing symptoms emerge or worsen, a child’s ability to participate in these routines and special family time is compromised and this can impact the whole family. My role at this time is to assist the family and client in deciding how they would like to manage the swallowing difficulties and discomfort as best we can. This can be complex and multi-faceted due to both ethical and medical considerations.
One of the reasons I love my job is the opportunity to build relationships with our families and earn their trust, in order to support them in their difficult decision making. It is something that is equal parts challenging and fulfilling. More importantly for me though, being able to help my patients and their families hold on to what is most important to them at a difficult time is rewarding.
Having access to evidence-based resources supports me to provide the best care I can. Currently there are no clinical practice guidelines available for paediatric speech pathologists working in palliative care in Australia. Whilst there is a significant amount of evidence to support our assessment and intervention as paediatric speech pathologists, there is not a single over-arching document. There are several groups undertaking this important work both nationally and internationally to address this gap, particularly for complex decision-making around eating and drinking safely.
Acknowledgement
I’d like to thank my fellow speech pathologist Claire Radford for her contributions to this blog and leadership in this area.
Where to go for more information?
Speech Pathology Australia: www.speechpathologyaustralia.org.au
Paediatric Palliative Care Service of Queensland https://www.childrens.health.qld.gov.au/service-paediatric-palliative-care/
Quality of Care Collaborative Australia (QuoCCA) https://www.quocca.com.au
References
- Waldman E, Wolfe J. Palliative care for children with cancer. Nat Rev Clin Oncol. 2013 Feb;10(2):100-7. doi: 10.1038/nrclinonc.2012.238. Epub 2013 Jan 22.
- Together for Short Lives. A Guide to Children’s Palliative Care. 4th ed. Bristol (GB): Together for Short Lives, 2018. 39p.
- Krikheli, L, Mathisen BA, Carey LB, Speech-language pathology in paediatric palliative care: A scoping review of role and practice. Int J Speech Lang Pathol. 2018 Oct;20(5):541-553. doi: 10.1080/17549507.2017.1337225. Epub 2017 Jun 30.
- Vesey S. Dysphagia and quality of life. Br J Community Nurs. 2013 May; Suppl:S14, S16, S18-9.
- Allen, J., & Wong, S. (2015). Feeding at Risk (FAR) Project. Retrieved from the Heart of England National Health Service Foundation Trust website.
- Maillet JO, Potter RL, Heller L. Position of the American Dietetic Association: ethical and legal issues in nutrition, hydration, and feeding. J Am Diet Assoc. 2002 May;102(5):716-26.
Ashlen Harrop, Senior Speech Pathologist, Oncology, Queensland Children’s Hospital