The ability to communicate ones needs, thoughts, feelings and wishes is central to a person’s sense of wellbeing and quality of life. It enables patients to be active participants in goal setting within the wider rehabilitation process, expressing their needs, wishes and priorities and contributing to personalised advance care plans. When communication is compromised, significant frustration and distress can result for both patients and their caregivers.
Speech and language therapists (SLTs) are skilled in assessing, diagnosing and advising on a wide variety of communication difficulties. Particularly when working with patients with life-limiting and rapidly progressing conditions, it is essential that intervention begins at an early stage in order to plan and prepare for any deterioration in communication abilities.
FF was referred to speech and language therapy shortly after her initial diagnosis of motor neurone disease. At this stage, she was still able to communicate well with only a mild dysarthria (speech difficulty); however, the various options for alternative communication aids were discussed in anticipation of a decline in her speech function. As her speech gradually deteriorated, she started using a light writer (text to speech communication device) to support her communication and she was referred for an early assessment of an eye-gaze communication system. Utilising this advanced system FF was able to continue to use this to communicate with her husband and friends until shortly before her death.
Eating and drinking also plays a key role in Rehabilitative Palliative Care in order to maximise not only nutritional intake but to optimise energy to participate in activities that add quality of life. Difficulties in swallowing (dysphagia) can result from various medical conditions and are frequently seen in patients as they approach the palliative stage of illness. SLTs are able to provide an expert opinion in the assessment, diagnosis and management of dysphagia, giving advice and guidance on dietary modifications and compensatory strategies with the aim of maximising a patient’s comfort and reducing any distressing symptoms which may arise.
SLTs provide specialist expertise and leadership to the hospice multidisciplinary team, to support patients and families in challenging decisions around alternative feeding and/or acknowledged risk feeding. Supporting people’s wishes to eat and drink where there is a significant risk of aspiration or choking can be extremely worrying for staff, and yet may provide critical quality to people’s lives. Empowering staff to be aware of, and work supportively alongside, risk is a challenging element of Rehabilitative Palliative Care where SLTs offer leadership and guidance on how to constructively manage the risk while enabling patients’ autonomous choice.
Speech and language therapy roles are extremely rare in hospices and subsequently patients and families are deprived of dedicated SLT expertise to optimise communication and swallowing function essential to quality of life.
To provide comprehensive Rehabilitative Palliative Care, specialist speech and language therapy must be available to all patients receiving hospice support.