4.10 Speech and language therapy in palliative care

Palliative care is an emerging speciality area within the field of speech and language therapy (SLT), with only a small number of specialist positions appointed. Patients with palliative care needs are most often referred to SLTs on the basis of needs associated with their diagnosis (e.g. motor neurone disease (MND)/amyotrophic lateral sclerosis (ALS)) rather than phase of illness. A search of electronic literature databases returns only a handful of articles on SLT in palliative care, most of which are commentaries rather than research reports (Frost, 2001; Pollens, 2004; Eckman and Roe, 2005; Myers, 2010; Javier and Montagnini, 2011). This belies the fact that many patients in the palliative phase suffer problems with swallowing (dysphagia) and communication, the core domains of SLT practice. The limited presence of SLTs in palliative care means it is likely that swallowing and communication problems go under-recognized and undertreated. Successful management of these problems can have significant impacts on quality of life (QOL) (Kulbersh et al., 2006; Hill, 2010), the ultimate goal of palliative care (World Health Organization, n.d.).

Communication diagnoses common in palliative care include:

It is important to recognize that these problems are distinct; any given person may present with one or a number of them.

In the swallowing domain, SLTs primarily focus on dysphagia in the oropharyngeal stage, with common symptoms including coughing or choking on solids and/or liquids, increased time to eat or drink, and discomfort/pain when swallowing.

This chapter will describe SLT needs commonly associated with a range of life-limiting conditions, together with the latest evidence for clinical practice and service delivery. We begin by summarizing overarching principles and considerations that are shared regardless of the underlying pathology.

Goals of assessment and management in the palliative phase are generally to optimize and maintain communication and swallowing for as long as possible in the context of declining health. But the story is not always one of inexorable decline; there may sometimes be a need to rehabilitate functioning following a medical emergency (e.g. cerebrovascular accident) or treatment with adverse effects (e.g. radiotherapy). As a general rule, interventions aimed at maintaining or improving functioning in communication and swallowing should be undertaken only when there is a reasonable expectation that these domains will positively influence psychosocial well-being or QOL more generally. For example, while (as for any client group) management of dysphagia may be aimed at ensuring nutrition and preventing aspiration, a palliative approach would require that the burden of assessment and management be weighed against likely net benefits to QOL (see below and Chapter 10.1).

The UK’s Royal College of Speech and Language Therapists (RCSLT) recommends that SLT in palliative care be guided by the following principles:

SLTs should seek to assess and manage functioning in a holistic manner that considers biobehavioural contributors and sequelae within the context of each client’s cognitive and sensory functioning, symptom profile, broader health status, and personal preferences and needs. Complex care needs arising from multiple comorbidities are commonplace in the palliative setting and require a comprehensive, multidisciplinary approach. SLTs will typically contribute to case management either as a member of an MDT or via consultation (see Chapter 4.1 for a summary of other disciplines commonly involved in palliative care). Of these two models, membership of an MDT generally affords greater opportunity to contribute to care plan development. Care plans outline a given client’s individualized goals of assessment and management together with the necessary interventions and multidisciplinary roles required to attain these. The prominence of communication and swallowing will vary according to the urgency of other needs as well as client and family priorities for care. Delivery of SLT should be integrated with other services as parsimoniously as possible to minimize client travel and other burdens. SLTs will need to work with the whole team to implement interventions and support decision-making. Members of the MDT with whom SLTs work especially closely include dieticians to ensure adequate and safe nutrition, physiotherapists to monitor chest conditions, and occupational therapists to access alternative communication devices and devise appropriate set-up for meals.

Regardless of diagnosis, people in the palliative phase of illness often suffer communication problems due to general weakness, fatigue, and side effects from medication (MacDonald and Armstrong, 2010). Communication is important for advance care planning, decision-making, and psychosocial well-being of both the patient and family as they progress along the disease trajectory. Enabling clients to participate in decision-making about their care is one of the SLT’s major roles in the palliative setting (Pollens, 2004).

Assessment and management of communication problems often takes place within the context of limitations in hearing and cognitive functioning, especially where patients are elderly. Optimizing the preconditions for effective communication (e.g. by means of a hearing aid) is essential before implementing interventions targeted at specific deficits.

Speech production relies on the coordinated processes of respiration, phonation, resonation, articulation, and neurological integration (Kantner and West, 1941): air from the lungs (respiration) passes through the vibrating vocal chords (phonation) to produce sound that is modified in the pharynx, mouth, and nose (resonation) and shaped by the tongue, teeth, and lips (articulation) to produce speech. Declining health status and deconditioning towards the end of life often impact breath control and speech musculature even when these are not directly impaired by underlying pathology.

Voice disorders are generally classified as dysphonia or dysarthria (Cohen et al., 2009). Dysphonia refers to impairment in phonation caused by a deficit in the larynx (‘voice box’). It is common in the elderly regardless of health status, especially in the form of presbyphonia, which refers to weakness of voice, change in pitch, decreased projection, vocal fatigue, increased effort to speak, and altered quality of the voice arising from ageing of the larynx. Dysphonia is often worsened in these cases by compensatory strategies such as straining, the remediation of which forms the focus of SLT. Voice therapy aimed at improving efficiency of voicing has been shown to increase voice-related QOL in elderly clients (Berg et al., 2008), and the benefits are likely to be even greater for people with poor health status in whom compensatory strategies may be fatiguing. Conversely, surgical approaches that are sometimes used to treat dysphonia in other groups are less likely to be appropriate in the palliative population.

Dysarthria and apraxia of speech are more common in certain health conditions and will be considered in the next section.

Language refers to systems of symbols that give meaning to speech or other, non-verbal forms of communication (e.g. writing). Language disorders acquired through illness are collectively described as dysphasia/aphasia (terms often used synonymously). Language problems can rise separately or concurrently in the abilities to use or understand language, referred to as expressive and receptive dysphasia respectively.

Where speech or language, or both, become inadequate for communication due to lack of intelligibility, loss of voice, or inadequate ability to retrieve and use words, SLT may focus on supplementing or replacing these with augmentative or alternative communication (AAC). AAC can take either a low-tech or a high-tech form. Examples of low-tech AAC include paper-based communication charts containing words or pictures that the person can point to. These can either be customized to the particular communication needs of the patient or rely on generic templates that include standard requests in the hospital or home setting. A number of high-tech computerized versions are now available including iPad applications (apps) that rely on input via picture/word selection or typing and produce auditory output (see Fig. 4.10.1). These are now available for loan and subsequent purchase in some service settings. The social acceptability of the iPad has done much to overcome the stigma of AAC; friends and family are often interested in the technology and keen to participate in communication attempts. While there are now a range of free AAC apps for both children and adults, those that are more expensive generally allow greater customization and chance of communication success.

Assessment and management of dysphagia is alone among the SLT domains in having serious medical implications and should be undertaken only by SLTs who have undergone specialist training at either an undergraduate or postgraduate level.

Langmore et al. (2009) recommend that the following should be considered signs and symptoms for increased risk of dysphagia and aspiration that prompt assessment or re-assessment:

Other signs to watch for include increased shortness of breath, taking longer than usual to eat or drink, pain/discomfort on swallowing, and difficulty initiating a swallow.

A palliative approach to SLT means that invasive instrumental assessments (endoscopy) and, to a lesser extent, radiological examination (videofluroscopy/modified barium swallow) tend to be indicated less commonly than for non-palliative client groups. The American Speech-Language-Hearing Association (ASHA) recommends that instrumental assessment not be undertaken where:

Alongside other MDT members, SLTs are responsible for supporting clients and families to make shared decisions regarding their care in full knowledge of the burden, risks, and benefits of different approaches to assessment and management, including the option of taking no action at all. ASHA has published guidelines for ethical decision-making relating to dysphagia (ASHA, 2002). Decisions regarding artificial nutrition and hydration in terminal illness are particularly controversial (Goodhall, 1997; Landes, 1999; Huang and Ahronheim, 2000; Wasson et al., 2001; Lipman, 2004; Bozzetti, 2008). Engaging the patient in advance care planning while (s)he still has cognitive capacity will make decision-making less onerous for families if such capacity is lost (Gillick, 2006). Where patients make an informed choice to risk dehydration, malnutrition, and/or aspiration rather than be fed by nasogastric or percutaneous endoscopic gastrostomy tube, management may be aimed primarily at maximizing eating enjoyment while making the best of suboptimal strategies for avoiding these risks to minimize negative impacts on QOL.

Strategies for reducing the risk of aspiration can be classified as compensatory, rehabilitative, or compensatory/rehabilitative (Langmore et al., 2009). Compensatory approaches include changes to the consistency of food and drink (e.g. thickened liquids), postural changes (e.g. sitting upright; ‘chin tuck’ (Hardy and Morton Robinson, 1999)), alterations in swallowing behaviour (e.g. repeated swallowing, coughing afterwards), or external manipulations (e.g. using a spoon for liquids) aimed at supporting the oropharyngeal stage of swallowing, protecting the airway, and/or ejecting aspirated material. Rehabilitative strategies are aimed at improving the speed, strength, and timeliness of swallowing, and include therapeutic exercises for the tongue, larynx, or pharynx.

Compensatory/rehabilitative strategies are those that are compensatory when introduced but may lead to improved swallowing without continuing intervention in the longer term. These include manoeuvres requiring effort from the client (e.g. super-supraglottic swallow) and increased sensory stimulation (e.g. using ice, sour taste, or electrical stimulation). Aspiration is also less likely where oral and pulmonary hygiene is of a high standard (Langmore et al., 1998).

Over and above avoiding aspiration, aims of SLT intervention for dysphagia in palliative patients often include enhancing enjoyment of eating and drinking, improving nutrition, lessening fatigue, reducing the time spent on meals and taking medications, and reducing anxiety relating to choking. Recent studies also suggest that keeping patients hydrated may be helpful in managing delirium, a common and distressing problem in people at the palliative phase (Galanakis et al., 2011). A palliative patient recommended to take thickened liquids by one of the current authors described the benefits as follows: ‘Thank goodness I can drink a glass of water with comfort now. Without that [the thickener], it takes your breath away and it hurts a bit and it (the thickener) doesn’t taste of anything.’ As well as being flavourless, new-generation thickeners are easy to mix (stir for 30 seconds) and give a smooth, even texture in any temperature or type of liquid that is stable for 24 hours. See Box 4.10.1 for an example of a programme aimed at reducing anxiety related to choking.

In addition to the general principles introduced above, assessment and management of communication and swallowing will need to address issues that are specific to particular health conditions encountered in the palliative setting. These are summarized in the following sections, together with case studies from the authors’ experience that have been formulated to protect patient identities.

The potential for SLT to contribute to supportive care in cancer has been acknowledged in national guidelines (National Institute for Clinical Excellence, 2004). People with advanced cancer of any type may experience communication and swallowing problems, and dysphagia is predictive of survival (Vigano et al., 2001). Most commonly, however, SLT is indicated for cancers of the head and neck, where both disease and treatment may have profound impacts on the ability to speak and/or swallow (Logemann et al., 1997). A chart audit of hospice patients with head and neck cancer identified that 53% of patients had communication difficulties and 74% dysphagia (Forbes, 1997).

Assessment and management of patients with head and neck cancer often takes place within the context of particular psychosocial predictors and sequelae. It is more common in men, in whom it is associated with socioeconomic disadvantage and continuing heavy alcohol use (Deleyiannis et al., 1996; Conway et al., 2010). Psychosocial problems may become exacerbated in cases where either disease or treatment, or both, is disfiguring (Katz et al., 2003). Lack of management adherence is sometimes raised as a concern but seems to be less of a problem where SLT needs are assessed at a multidisciplinary clinic, at least in early-stage disease (Starmer et al., 2011).

Surgical removal of part or all of the tongue in the treatment of oral cancer is likely to reduce speech intelligibility, especially when the tip of the tongue is affected (Cohen et al., 2009). Where surgery is extensive, SLT may be needed to teach compensatory manoeuvres aimed at modifying intonation, pitch, vocal intensity, and rate of speech (Skelly et al., 1971). Where swallowing is compromised by surgical removal of part of the tongue, head tilting can be used to transit food via gravity (Newman, 2009). Sensory feedback may also be negatively impacted by surgery; in these cases, it may help to exaggerate stimuli by adjusting the size/temperature of the bolus or artificially increasing pressure on the tongue (e.g. using a spoon). SLTs may sometimes work with a prosthodontist to design and support use of a prosthesis.

Rehabilitation of voice and speech in clients who have undergone laryngectomy for laryngeal cancer may make use of oesophageal speech, artificial larynx, or tracheo-oesophageal voice restoration. A study by the United States Department of Veterans Affairs found artificial larynx to be the most frequently used option following laryngectomy, despite being judged the least intelligible (Hillman et al., 1998). The appropriate option for each client will vary according to personal choice, post-treatment tissue changes and complications, behavioural and psychosocial variables, and the availability of SLTs to support rehabilitation (Cohen et al., 2009). SLTs will need to work closely with the medical team and client both pre- and postoperatively to support decision-making and rehabilitation. Because treatment via radiotherapy or chemotherapy is more aggressive when aimed at cure, the most severe acute adverse effects may not be commonly encountered in the palliative setting. However, where curative treatment is unsuccessful or the cancer recurs, SLTs may need to assess and contribute to management of sequelae from long-term impacts of high-dose radiation, including dental decay, subcutaneous fibrosis, oesophageal stenosis, hoarseness, and damage to the middle or inner ear (Manikantan et al., 2009). Where radiotherapy is palliative, a balance is sought between benefits to functioning and QOL resulting from reduction in tumour versus adverse effects such as mucositis and xerostomia (Agarwal et al., 2008). Pre-assessment of swallowing prior to treatment is useful in identifying clients at risk of long-term dysfunction so that information and management can be tailored accordingly (Patterson and Wilson, 2011). Prophylactic swallowing exercises prior to radiotherapy may also be helpful but require further evaluation, especially where radiotherapy is palliative (Roe and Ashforth, 2011).

In brain tumours, assessment and management of communication and swallowing difficulties often occur within the context of changes in cognitive functioning and, sometimes, personality and social behaviour. Despite the poor prognosis associated with most brain tumours, evidence from a small-scale study suggests that swallowing difficulties may be as responsive to rehabilitation as in stroke (Wesling et al., 2003). Where dysphagia occurs in the weeks prior to death, decision-making about appropriate management will be more complicated (Pace et al., 2009; Sizoo et al., 2010). Communication impairment in brain tumours may include dysphasia, dysarthria, dyspraxia of speech, disfluency, and dysphonia. Intervention may take the form of rehabilitation, the teaching of compensatory strategies to the patient and carers, and education regarding the impairment. Acquired dyspraxia of speech is linked to either cortical or subcortical damage, or both, in the language-dominant hemisphere of the brain (McNeil et al., 2009). Approaches to rehabilitation of dyspraxia can be grouped into (a) articulatory-kinematic, (b) rate/rhythm control treatments, and (c) inter-systemic facilitation/reorganization treatments Wambaugh et al., (2006a, 2006b). Most evidence for these approaches comes from studies with stroke patients and is most substantial for articulatory-kinematic treatment, which uses a combination of repeated motoric practice, modelling-repetition, integral stimulation, and articulatory cueing.

Brain tumours are among the few cancer types that occur in children and adolescents, with one study reporting an 81% prevalence of problems in SLT domains (Goncalves et al., 2008). Palliative care for children is distinguished by the unique psychosocial implications of life-limiting illness for clients and families in this group (Moody et al., 2011). See Box 4.10.2 for a case study of a client with a brain tumour.

Problems with dysphagia and communication are common where there is deterioration in lung function. A developing body of literature suggests a tight neural coupling between the central control of respiration and swallowing which may be disrupted by ageing, neurological disease, respiratory disease, or cancer (Martin-Harris, 2008).The normal breathing pattern during swallowing is inspiration, which aids propulsion of food/drink into the pharynx, a pause in breathing (apnoea) during the swallow, followed by expiration, which helps clear any residue in the airway. Poorly controlled pre-swallow inspiration can lead to material being breathed into the airway. Particularly if a patient is short of breath, it is not uncommon for the swallow to be followed by inspiration due to respiratory drive, increasing the risk of material being drawn into the airway.

Whilst not among the most common symptoms in lung cancer, dysphagia tends to worsen over time (Lovgren et al., 2008). In addition to the mechanism just outlined, dysphagia may also occur as a result of chemoradiation, where there is phase II evidence for efficacy of the human recombinant keratinocyte growth factor, palifermin (Schuette et al., 2012).

Up to one-third of patients with advanced chronic obstructive pulmonary disease (COPD) experience dysphagia, often with silent aspiration; this is often a precursor to an exacerbation and hospital admission (Reid, 1998). SLT in COPD patients has demonstrated significant improvement in self-management and swallowing-related QOL, including decreased burden of dysphagia, physical problems of dysphagia, and managing diet options and food selections (McKinstry et al., 2010).

Hoarseness is a common symptom in patients with COPD secondary to gastro-oesophageal reflux disease (Rouev et al., 2005), xerostoma (Roh et al., 2006), or inhaled corticosteroids (Williamson et al., 1995). Disturbances in airflow volume and rate found in COPD also contribute to decreased vocal volume and shorter message length (Martin-Harris, 2000). These problems may also occur in patients with lung cancer, together with vocal cord paralysis (Benninger et al., 1998). Non-invasive interventions by the SLT for vocal paralysis include pushing exercises to improve vocal cord approximation, AAC, and education on how to most effectively manage the impairment. See Box 4.10.3 for a case study concerned with lung cancer.

People with dementia present a particularly challenging client group for both practical and ethical reasons. By definition, assessment, management, and decision-making must take place within the context of decreased cognitive function. Problems with swallowing typically begin in the later stages of dementia, by which time patients have often become resistant to care (Feldman and Grundman, 1999). By the time end-stage dementia is reached, almost all intentional communication will have been lost, and assessment must rely on observation alone. Weight loss often persists despite receiving food and fluids. In frontotemporal lobe dementia, the risk of aspiration from neurological deficits may be exacerbated by compulsive eating and food gorging (Langmore et al., 2007).

Intervention for dysphagia in dementia may include diet and posture modification as well as changes in feeding technique and environmental factors. Quite apart from any physiological problems with swallowing, patients may have difficulty maintaining hydration and nutrition due to cognitive and behavioural factors (e.g. an inability to recognize food or liquid in the mouth; refusal to open mouth) (Wasson et al., 2001). Whilst there is evidence that artificial nutrition and hydration neither prevents aspiration nor improves survival or other clinical outcomes (Ganzini, 2006; Sorrell, 2010), tube feeding in advanced dementia remains widespread. Many health professionals, including SLTs, may lack awareness that a palliative approach is indicated in advanced dementia (Vitale et al., 2011). In residential aged care, economic and practical factors may also be influential, as the cost of hand-feeding often outweighs that of artificial nutrition (Lipman, 2004). Educating health professionals and families about the appropriateness of a palliative approach and supporting them in making the transition to comfort care may be the priority at this stage of the disease trajectory.

Speech and language deficits vary according to dementia type (Ross et al., 1990). Cortical dementias such as Alzheimer’s disease and Pick’s disease are associated with disturbances of language function whereas subcortical dementias such as progressive supranuclear palsy affect the motor aspects of speech. Patients with vascular dementias often have dysarthria with or without language difficulties, depending on the site of the infarcts. Language problems in early dementia are characterized by a difficulty in recalling names or words (anomia), which results in reduced speech fluency and use of circumlocution; these problems worsen as dementia progresses until even the names of immediate family are difficult to recall (Ashley et al., 2006). Therapy is aimed at supporting communication through the use of AAC, situational cues and routines, as well as encouraging family and other caregivers to enhance verbal communication with gestures, visual cues, and slower speech. Memory books, consisting of autobiographical and daily schedule information, together with prompts to overcome barriers have been found to improve quality of communication between aged care residents with dementia and staff in a cluster randomized trial (Bourgeois et al., 2001). See Box 4.10.4 for a case study concerned with dementia.

A range of degenerative neurological conditions such as MND/ALS, multiple sclerosis, Huntington’s disease, and Parkinson’s disease can impact communication and swallowing. Dysarthria is the most common speech impairment but differs between conditions with regard to onset, type, and progression (Cohen et al., 2009). Acquired dyspraxia of speech may sometimes be the first sign of neurodegenerative disease (Duffy, 2006). Patients with Parkinson’s disease and especially MND/ALS will be likely to require AAC as the disease progresses. For patients in the latter group, AAC may need to become progressively more high tech as physical capacity declines, starting with typing and touchscreens before moving to head-tracking and eye-tracking technologies. A limited, low-tech alternative in the final stages of illness is to use eye-gaze to signal ‘yes’ or ‘no’. In the future, there is hope that people with no physical capacity at all will have recourse to computer-based solutions that make use of brain rather than muscle activity (Allison et al., 2007).

In addition to swallowing problems shared with other diagnoses discussed in this chapter, people with degenerative neurological conditions may present with problems with the oral phase of swallowing due to muscle weakness and excessive saliva, resulting in problems with chewing and social stigma associated with dribbling (Squires, 2006). The disproportionate energy required to eat and drink means that ‘little and often’ may be the best approach to intake of food and fluids.

The SLT domain most specifically implicated in stroke is language, with dysphasia occurring in between 22% and 38% of cases (Pedersen et al., 1995; Kyrozis et al., 2009; Dickey et al., 2010). With regard to speech, dysarthria is more common than dysphonia and is worse where the stroke is bilateral, resulting in slow speech, imprecise articulation, and strained voice quality similar to MND; loudness, pitch, and vocal intensity and stress patterns may also be affected (Cohen et al., 2009). Stroke is also the most common cause of acquired dyspraxia of speech, which (as in other conditions) occurs especially frequently in patients who also have dysphasia (Duffy, 2005).

Problems with dysphagia following stroke are predicted by aspiration within the first 72 hours (Ickenstein et al., 2012). Where stroke leads to hemiparesis, the client should be encouraged to turn his/her head to the weak side to divert food down the stronger side of the larynx (Newman, 2009).

Stroke is less commonly the reason for referral to palliative care than a comorbidity endured by people referred for other reasons. Patients referred as a result of stroke often have limited consciousness, and intervention may consist simply of mouth care or comfort feeding (West et al., 2005; Foley et al., 2008; Brady et al., 2012).

Addressing the paucity of rigorous research literature is a priority if SLT in palliative care is to become evidence based in order to justify funding and resources. Research in palliative care is undergoing a period of rapid growth (Kaasa and Radbruch, 2008), and SLTs would be well advised to participate in collaborative research groups and other capacity-building initiatives available within the sector more generally. The multidisciplinary nature of palliative care makes it essential that research aimed at answering clinical questions of interest to SLT involves researchers from other disciplines to optimize usefulness and enhance dissemination and translation into practice. As for other symptoms, there is a need to harmonize measurements of communication and swallowing to enhance comparability between studies. For example, a review of speech and voice outcomes following chemoradiation for head and neck cancer found 18 assessment tools had been used in 20 studies (Jacobi et al., 2010).

In practice, there is a need to increase accessibility and referral to SLT for people with life-limiting illness. In the United States, patients enrolled in the Medicare hospice benefit are eligible to receive SLT and other allied health services without additional cost (Centers for Medicare and Medicaid Services, 2010). But even in universal health-care systems, the availability of SLT in palliative care services is variable. Health-care insurers often cover SLT only when the patient has a specific diagnosis. This neglects the fact that patients with life-limiting illness of any kind may require support for communication and swallowing due to weakness, fatigue, and side effects from medication.

Finally, there is a need to develop understanding and capacity in the SLT workforce relating to the palliative approach. Specialist training programmes and SLT support networks are at present limited. In the United Kingdom, an SLT special interest group in palliative and supportive care works in partnership with the RCSLT to develop clinical guidelines and policies and provide opportunities for education (Eckman and Roe, 2005). In Australia, efforts have been made to introduce palliative care to the SLT curriculum at an undergraduate level (Mathisen et al., 2011). A personal communication from ASHA (3 October, 2012) identified no similar initiatives underway in the United States.

This chapter has summarized communication and swallowing problems commonly encountered in people with life-limiting illness, together with approaches to assessment and management. More research is needed to inform appropriately integrated, person-centred models of SLT provision that enable problems with communication and swallowing to be addressed alongside other symptoms and psychosocial and practical needs.