Authors:

Karen Slyne
Specialist Palliative Care Speech & Language Therapist, Milford Care Centre

Madeline Hawkes
Specialist Palliative Care Speech & Language Therapist, St Joseph’s Hospice

Identifying the gap in palliative care outcomes

Outcome measurement in palliative care has traditionally prioritised medical and nursing perspectives, with limited attention to communication, swallowing, and oral comfort. As speech and language therapists (SLTs), we understand that communication, swallowing, and oral comfort shape a person’s independence, dignity, and quality of life especially at end of life. But why do these speech and language therapy domains remain so poorly captured in routine outcome measurement?

In 2025, recognising this gap, the Palliative Care Speech and Language Therapy Clinical Excellence Network (CEN) brought together a Working Party Group (WPG) of 11 SLTs from palliative care settings across the UK and Ireland. Our aim was to explore whether existing measures could successfully reflect SLT practice, and if not, consider what a specific SLT Outcome Measure might look like.

Where existing measures fall short

Our first step was to review the tools already used in palliative care. The Palliative Care Outcomes Collaboration Symptom Assessment Scale (PCOC SAS) was highlighted as a valuable tool because it is validated, brief, and allows proxy reporting which is key for use with people who may struggle to self-report, particularly as they approach end of life. One member of the group had previously tested the SAS “Other” domain as a means of recording communication and swallowing outcomes over a period of 12 months. Patients who used the measure following SLT intervention reported reduced swallowing burden (92%) and reduced communication burden (57%).

The adapted SAS captured broad feedback from SLT interventions but it is not designed with communication or swallowing complexity in mind, and it relies heavily on patient self-rating. We know that patient self-rating is not always feasible for those with a communication impairment, cognitive decline, or severe fatigue. In essence, we recognised that the tool was helpful, but too general. We needed to create something specifically for SLT practice to capture the impact of SLT intervention.

Towards an SLT-specific outcome measure

As the work progressed, the group recognised that a therapist-led outcome measure could fill this gap. One member of the group developed a tool drawing on specific descriptors using an 11-point rating scale. The objective was to complement and not replace patient-reported measures, acknowledging that both perspectives are valuable, yet not interchangeable. Over four meetings, we refined the core descriptors and tested feasibility in routine clinical practice. Early reflections supported our conviction that relying solely on patient scoring within palliative care is not without limitations. A therapist-led measure could ensure that subtle but clinically meaningful changes such as reduced distress or burden during oral care, improved comfort when eating and drinking, or enhanced communication are recorded consistently.

Early signs of reliability

Five clinicians participated in informal inter-rater consistency testing using anonymised case studies. Four therapists provided identical scores across each rating point, while one deviated slightly by just 2 points. This suggests that, with further modification and clear descriptors, a therapist-led measure could achieve acceptable reliability.

Why this matters now

SLTs working in palliative care often see meaningful change that is difficult to measure using existing tools. In their daily work, SLTs support patients to enjoy sips of water or a spoon of ice cream without distress as well as supporting individuals to effectively communicate their final wishes to family and the wider team. These outcomes matter deeply. Yet they remain largely invisible within formal measurement systems in palliative care.

As services come under increasing pressure to demonstrate impact, the absence of an SLT-specific tool risks undervaluing our contribution in palliative care. More importantly, it risks obscuring outcomes that matter most to patients.

What’s next?

This report marks the beginning. The next phase will include:

• a formal scoping review of SLT outcome measures used in palliative care
• refinement of our scale descriptors and rating markers
• larger-scale feasibility and acceptability testing
• psychometric testing to determine tool validity and reliability
• development of guidance and training materials for clinical use

We hope that this work contributes to a broader conversation about what “outcome” really means in palliative care and whose voices are reflected in the measures that we use.

For SLTs, developing an outcome measure that reflects our role in palliative care is not simply a documentation exercise. It is a way to effectively honour the experiences, comfort, and dignity of the people we support.

Declaration of interests

We have read and understood the BMJ Group policy on declaration of interests and declare no competing interests. 

AI Disclaimer: This document was structured and drafted with the assistance of Microsoft Copilot (AI). All content has been reviewed, edited, and approved by the authors to ensure accuracy, appropriateness, and professional standards. The authors take full responsibility for the final version of this document.

References

• Bausewein, Claudia, et al. “EAPC White Paper on outcome measurement in palliative care: Improving practice, attaining outcomes and delivering quality services–Recommendations from the European Association for Palliative Care (EAPC) Task Force on Outcome Measurement.” Palliative medicine 30.1 (2016): 6-22.
• Daveson, Barbara A., et al. “The PCOC Symptom Assessment Scale (SAS): A valid measure for daily use at point of care and in palliative care programs.” PLoS One 16.3 (2021): e0247250.
• Robinson, Charlotte, Eli Harriss, and Mary Miller. “P-149 A review of outcome measures used by speech and language therapists in adults under palliative care.” (2021): A62-A63.

Authors contact details:

Ms Karen Slyne
Karen works as a Speech and Language Therapist at Milford Care Centre in Ireland. 
Tel. 00353 61 485800; Email: k.slyne@milfordcarecentre.ie
Orcid ID: Karen Slyne (0009-0002-9644-1152) – ORCID

Ms Madeline Hawkes
Madeline works as a Speech and Language Therapist at St Joseph’s Hospice in London and Broomfield Hospital in Chelmsford where she specialises in Head and Neck Cancer.
Tel. 0208 525 6000/ Ext. 5141; Email: m.hawkes@stjh.org.uk