professional role

Is speech and language therapy relevant when a client requires end of life care? Jan Stanier explores the needs of clients with dysphagia associated with incurable head and neck cancer, and finds an urgent need for development work by the profession.
if you negotiate life and death in your work place importance on morality want to be involved in developing the profession

A shift of empha
H
ead and neck cancer can present in many forms and at many different stages within the recognised disease process. The number and type of cases varies greatly across local regions and the world and there is a strong link between incidence and lifestyle factors. With fewer than 5000 new cases a year in Britain (Tobias, 1997), evaluation of clinical management and outcome is inevitably difficult. The rehabilitative role of speech and language therapists in head and neck cancer is well established, but what of our role within the context of dysphagia management in end stage care? Talmi et al (1997) found that, Pain, airway problems and dysphagia were the common problems reported and Regnard (1990) cites dysphagia in up to 83 per cent of head and neck cancer patients. Neither author specifies degrees of dysphagia and presumably the data encompasses a range from minimal disturbance to an inability to maintain functional oral intake. Lovel (2000) says, In a series of 150 patients with incurable head and neck cancer 50 per cent had pain, 38 per cent dysphagia, 28 per cent obstruction of the airway, 14 per cent a fungating wound, 12 per cent nausea and vomiting and 10 per cent dry mouth...such patients often have no distant metastases and therefore die slowly with increasing disability from local invasion and progressively distressing symptoms. The aim at this stage is to minimise symptoms, maximise and maintain safety of the swallow and to monitor changing status to ensure that decisions remain appropriate (figure 1). This is different from the typical acute neurological rehabilitative model on which much of our training in dysphagia is based, and is perhaps more closely related to the care of those with progressive neurological disorders or frail elderly clients. As one of the members of the team with the opportunity to develop a trusting relationship and rapport with the patient and carer, a speech and language therapists contribution to patient discussions and team decision making can be key to the patients perception of care and quality of life. In recent years, the management of people with head and neck cancer has begun to include a wider range of professional and support staff

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From the very moment of diagnosis, of equal importance to clinical management is awareness of the role and perceptions of the patient and carer.

both in the acute and community settings. This results in part from the publication of the report by Calman & Hine (1995) which sought to enhance standards of care for patients through the development of specialised multidisciplinary teams for all common cancers. At its best, this approach will lead to the involvement of a number of central and local agencies. Most patients will receive advice from nursing staff, a nurse specialist, dietitian, speech and language therapist, dental surgeon, perhaps a physiotherapist and may also be advised by an occupational therapist during the acute phase of care. Increasingly, in addition to the community based counterparts of many of the above, the role of a range of other community based services is becoming more central on completion of the initial phase of treatment. This may include district nursing staff, social work staff and designated liaison staff according to the service available in a particular area. In the UK, many patients will have contact with Macmillan Nursing Staff as well as hospice staff, charitable support services and voluntary groups. Typically, the patient will pass on to a rehabilitation pathway where the advice of all members of the team remains essential but where the input of relevant nursing staff, support staff and specialist professionals as well as allied health professionals will be key to the patients perception of support and eventual outcome. Many patients will then progress on to a longer term monitoring programme with eventual discharge (for example, after five years free of symptoms). For others, where symptoms persist or recur, management will shift in emphasis from a curative aim to become longer term palliative or end of life care. The term palliative is often used to mean end of life care however, Diehl (1994) demonstrates a true understanding of the meaning of palliative versus end of life care: Palliative care is part of a continuum of care for cancer patients and can be implemented at any level of the health care system from home to hospital or diagnosis to death. The consultant leading the multidisciplinary team is usually the person who will identify this shift in emphasis in consultation with other professionals involved.

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hasis
Beneficial

Figure 1 Definition of palliative care (NCHSPCS, 1999)

In a study of the profiles of dying residents of a nursing home, Parker and De Bellis (1999) concluded that adequate time, skill mix, staff development and support and the provision of palliative care education for staff and GPs were needed. While it is well recognised that, whatever their stage/extent, patients with head and neck cancer will benefit from palliation integrated into a complete cancer care programme (Diehl, 1994) and a multidisciplinary model of care, this is unfortunately not always the case and, Too often, teamwork is restricted to technical transmission of information or conversations in corridors (Burucoa, 1993). A model of working generally regarded as beneficial both for the multidisciplinary team and the patient is integrated care pathways (Ellershaw et al, 1997). This promotes the identification of specific aspects of multidisciplinary input which are the minimum required as the patient progresses through the care process. Intervention is recorded and analysed to provide confirmation that the patient has received the appropriate input and to assess effectiveness. From the very moment of diagnosis, of equal importance to clinical management is awareness of the role and perceptions of the patient and carer. This includes not only assessment of quality of life issues, but consultation about management options, providing accurate and updated information and allowing for patient choice including the opportunity for a change of opinion. Where possible, the patient needs to be aware of treatment aims and limitations. In some cases, patients and carers may prefer not to discuss treatment choices; this may present a difficulty for the care team but the patient must be free to state their preferred method of dealing with the situation in which they find themselves.

Palliative Care, as the World Health Organisation has recognised, is the active, total care of patients whose disease no longer responds to curative treatment and for whom the goal must be the best quality of life for them and their families. Palliative medicine is now a distinct medical speciality in the United Kingdom, it focuses on controlling pain and other symptoms, easing suffering and enhancing the life that remains. It integrates the psychological and spiritual aspects of care, to enable patients to live out their lives with dignity, as well as offering support to families both during the patients illness and their bereavement. It offers a unique combination of care in hospices and at home.
but the manner in which it is related. Unfortunately, this remains an area of little available information and quality of life questionnaires designed specifically for use with head and neck cancer patients may be unsuitable. As they tend to be presented with cascading scores for each element, they risk compounding any negative feelings at this stage. For the patient, many issues aside from clinical care may influence their response to the end stage situation, including emotional aspects such as adjustment, feelings of guilt, fear and anger as well as the effect of altered body image, self esteem, a sense of control over events and level of confidence. The effect of nutritional and pharmacological management may also impinge on the patients response and Enck (1989) comments that, The clinical consequences of dysphagia are malnutrition and dehydration which often lead the care givers and the patient/family into conflict regarding management.

(Enck, 1989). Enck goes on to say, Conservation treatment with diet, attention to oral hygiene, pain control, anti-emetics, steroids and radiation therapy can relieve dysphagia in about 60 per cent of patients. In many cases the typical bedside evaluation of swallowing may indicate that the oral route for nutrition and hydration presents some risk. This may relate to potential airway compromise with regard to clearance, fatigue effects or risk of aspiration. Other significant related factors include the effects of oral intake on the duration of life. In some cases, the question of prolongation or shortening of expected life at this stage will be relevant.

Risk versus benefit

Factors such as quality of life and social issues related to eating/drinking also become more significant. Where a patient chooses to continue oral intake in the knowledge of these potential issues, this presents a problem for the therapist. The situation is far removed from our traditional role in that, with an acute neurological patient, the team decision may well be to avoid oral intake and opt for a non-oral route on a short or longer term basis whilst rehabilitation or swallowing therapy is conducted. In the case of end stage head and neck cancer care this approach would be unlikely to be considered in the patients interests as there are a number of other factors to consider, the main one being patient choice. The question of risk versus benefit is highly relevant. Often, a compromise situation is chosen, as alternative nutrition/hydration at this stage of care is a contentious issue and much of the available research is against providing non-oral intake on the basis of its potential effects on prolongation of a life which may be considered by the patient to be of poor quality (Fainsinger & Gramlich, 1997). As a result, a patient choosing to continue oral intake may need to be advised on how best to minimise risk. The emotional benefit of maintaining oral intake may be perceived by the patient to be greater than the potential risk it presents. This may put the speech and language therapist in a vulnerable position professionally if the therapist does not have an established, recognised and ongoing relationship within the multidisciplinary team. "

Involved at any stage

The speech and language therapist may be involved in the care of this group of patients at any stage in the process from initial diagnosis to receiving a referral for a patient requiring end of life care. As a result, the nature and aims of the role vary in the same manner as for all members of the multidisciplinary team, and an awareness of issues of clinical responsibility and accountability is essential. There may be particular issues around the subject of oral intake (including medication) versus the deemed safety of the swallowing process. It is important to identify not only the nature and extent of the dysphagia but also the specific nature and the presence of any related factors which may be contributory, such as poor oral hygiene, and poor neuromuscular coordination

Seeking hope
How the patient and carer perceive treatment and outcome will depend greatly upon opportunity for tactful, gentle discussion and communication. Diehl (1994) notes that, These patients mostly realise that there is no cure and perhaps not even prolongation of life - they seek hope. It is therefore not always a question of what is said,

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Five steps to better practice in end of life care

legal duty of care and accountability, as well as a discussion of risk assessment. In the meantime, those working in this field should at least have clear and detailed job descriptions and ensure they have written consent for their involvement.

There may be an argument to withdraw speech and language therapy care at this point, however I would argue that this is one of the stages within the care process where the speech and language therapist can offer the most support. This may be in relation to instigating textural, postural or presentation modifications or to advising carers on how/what the patient is likely to tolerate most successfully and to counselling type support for the patient and carer (see case examples in figure 2). It may also extend to recommending pharmacy support with regard to medication in liaison with appropriate agencies. The important issue would seem to be that any therapist working with patients with head and neck cancer at this stage should ensure that all patient decisions are made within the context of the multidisciplinary team where it is recognised that the lead consultant has ultimate responsibility for ensuring that the patient and carers are able to make informed choices. It is clear that a patients consent alone is insufficient; therapists must gain informed consent. Although the majority of patients with head and neck cancer are usually deemed competent to make a decision about their care, this can be affected by factors such as medication, and is certainly something we must ensure. Communication with the patient and carer is essential - this should be tactfully and sensitively delivered at the appropriate rate with adequate opportunity for discussion/changed goals. Information should be tailored to individual needs and reinforced with written material where indicated. In addition, the speech and language therapist should ensure that any team/patient decisions are well documented both in the medical case notes and departmental records.

Justify decisions

Competent and confident

It is essential to know where the speech and language therapy role ends and a need for further more specialised support begins as well as how to access any additional support via the team. A therapist should be competent to recognise when therapy input is unlikely to be in the patients best interests and confident enough to voice this professional opinion to the patient and team. In end of life care, it should be remembered that maintenance of an established supportive relationship with the patient and carers - even at the point where no further clinical advice is indicated - can serve to maintain a feeling of continuing support for the patient and carer and should not be underestimated in terms of the perceived quality of care. There are no clinical guidelines available from our professional body on management of end of life care and none planned in the immediate future. In Communicating Quality 2 (RCSLT, 1996), a reference to head and neck surgical patients includes a statement that, Intervention including counselling may be appropriate in cases where the client is in the terminal stage of a disease. Further clarification would be helpful here and with regard to the speech and language therapists

The general principles of an ethical approach to patient care imply the need to justify decisions and actions in moral terms. They include the concepts of beneficence (do only good), non-maleficence (do no harm), respect for autonomy Within post basic and more advanced training (patient wishes) and justice (fairness to patient courses in dysphagia, there does not seem to be and carers and equal access to resources). This may consistent inclusion of information or advice for the be of some assistance in justifying decision making practising therapist on the management of palliawith a patient who chooses to continue oral intake tive or end stage patients of any aetiology. Often and needs information from the speech and lanthe topic is included as a brief addendum rather guage therapist to minimise risk. However, as it than a key area of input. As a result there is potencould also be said that advising on eating and tial for considerable variability in the provision of drinking strategies at this stage is acting against speech and language therapy care and in the the principle of beneficence, at all times documenextent of speech and language therapy involvetation, decision making and regular opportunity ment at all stages of a patients for review within the context of the a patient choosing to progress through the support sysmultidisciplinary team is essential. tem. Looking beyond our own profes- continue oral intake It is recognised (see for example sion for guidance, there are no RCSLT, 1996) that undergraduate Scottish Intercollegiate Guidelines may need to be Network (SIGN) guidelines in this advised on how best and postgraduate training for speech and language in the area of area and none planned. A clinical head and neck surgery care, particstandard (CSBS, 2000) does not to minimise risk. The ularly in end stage care, is sparse. include specific reference to head emotional benefit of This raises the question of whether and neck cancer but does outline maintaining oral the profession needs to highlight key palliative care aims including:this area of practice and examine controlling pain and other intake may be the required competencies within it. distressing symptoms. perceived by the Any speech and language thera helping patients and families patient to be greater pist undertaking to work with the cope with the emotional upset head and neck cancer client group and practical problems of the than the potential and, in particular, patients requirsituation. risk it presents. ing end of life care, should ensure helping people to live as actively that they are competent to do so. as possible despite their illness. At the moment, this means completion of a post supporting families and friends in their bereavement. graduate qualification in swallowing, mainteThe speech and language therapist should be nance of a personal log of development activities able to contribute to all of the above. and ideally advanced study in head and neck therA consensus document on effective head and apy. Many therapists benefit from working with neck cancer management (BAO-HNS, 1998) outlines an experienced colleague in a mentoring relathe nature and incidence of a range of head and tionship whilst establishing individual clinical neck cancers. It discusses methods of review and knowledge and confidence. quality assurance as well as areas of development As a profession, we could begin to address these and quality of life measures. It specifically disissues through a working group in conjunction cusses the rehabilitation of speech and swallowing with ongoing projects such as the competencies and highlights the need for the multidisciplinary and clinical guidelines projects (Royal College of team to include an experienced lead speech and Speech & Language Therapists, see language therapist. Unfortunately, whilst the secwww.rcslt.org). A more flexible approach may be tion on palliation includes discussion of the key to instigate specific interest groups with a focus elements of palliative care and emphasises the

1. Put clients and their families and their changing needs and wishes first. 2. Be sensitive to beginnings, shifts and endings and their implications. 3. Minimise symptoms and risk, maximise quality and monitor/review constantly. 4. Ensure multidisciplinary working, preferably through an integrated care pathway. 5. Recognise support at the end of life is valuable to perceived quality of care.

need for multidisciplinary working, it in common with Calman & Hine (1995) - does not specifically mention the role of the speech and language therapist. It does however stress the need to treat concurrent symptoms such as breathlessness and nausea. Presumably, dysphagia and eating difficulties could be included within this category, which would necessitate our inclusion.

Training

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Figure 2 Case examples

on end of life care; this could incorporate degenerative neurological and frail elderly groups where similar issues arise. I hope that, in raising these questions, this work may contribute to the continuing development of the profession. Jan Stanier is head speech and language therapist at the Royal Alexandra Hospital in Paisley, tel. 0141 580 4019. This work was completed as part of the Advanced Dysphagia Course (Level 3) at Manchester Metropolitan University. Additional note: Since this work was written a further BAO - HNS document is planned which it is hoped will highlight some of these issues. The Clinical Standards Board for Scotland has also produced a further document on specialist palliative care.

References
British Association of Otolaryngologists Head and Neck Surgeons (1998) Effective head and neck cancer management - consensus document. London. Burucoa, B. (1993) The pitfalls of palliative care (Editorial) Journal of Palliative Care 9 (2) 29-32. Calman, K. & Hine, D. (1995) A policy framework for commissioning cancer services. Department of Health. Clinical Standards Board for Scotland (2000) Core principles of cancer care and standards for palliative care. Edinburgh. Diehl, V. (1994) Controversies in terminal care. Support Care Cancer 2: 82-87. Ellershaw, J., Foster, A., Murphy, D., Shea, T. & Overill, S. (1997) Developing an integrated care pathway for the dying patient. European Journal of Palliative Care 4 (6) 203-207. Enck, R. (1989) The management of malignant dysphagia. The American Journal of Hospice Care January/February. Fainsinger, R.L. & Gramlich, L.M. (1997) How often can we justify parenteral nutrition in terminally ill cancer patients? Journal of Palliative Care 13 (1) 48-51. Lovel, T. (2000) Palliative care and head and neck cancer. British Journal of Oral and Maxillofacial Surgeons 38: 253-254. National Council for Hospice and Specialist Palliative Care Services (1999) Directory of Hospice and Palliative Care Services. Parker, D. & De Bellis, A. (1999) A profile of dying residents in South Australian nursing homes. International Journal of Palliative Nursing 5 (4) 162-170. Regnard, C. (1990) Managing dysphagia in advanced cancer - a flow diagram. Palliative Medicine 4: 215-218. Royal College of Speech and Language Therapists (1996) Communicating Quality 2. London. Talmi, Y.P., Bercovici, M., Walker, A., Horowitz, Z., Adunski, A. & Kronenberg, J. (1997) Home and inpatient hospice care of terminal head and neck cancer patients. Journal of Palliative Care 13 (1) 9-14. Tobias, J.S. (1997) Management of head and neck cancer in Britain (Editorial) British Medical Journal 315: 1556.

1) A 90 year old man was admitted having presented with an advanced oral cancer affecting the left buccal mucosa, left retromolar area and pharynx. Chest status was poor and aspiration was suspected. Bedside swallowing assessment indicated a probable risk of aspiration on free fluids and large boluses of solids due to poor oral control, reduced base of tongue and pharyngeal wall action and clearance/fatigue issues. This gentleman was alert, aware and cooperative - he was afraid of choking but keen to eat/drink and desperate to return to the nursing home where he had lived for many years. Following team discussion and detailed speech and language therapist/consultant discussion, the decision was made to advise on modification of diet and presentation and to allow him to return home (with staff training). A recommendation was made for syrup textured fluids and soft/moist diet under the supervision of trained staff to ensure that presentation was by small bolus (5ml maximum) and placed to the right side of the mouth. A slight head turn to the left and chin tuck also aided clearance to some degree. Although it was clear that this regime would not entirely remove the risk of aspiration, it did allow this man to return home and continue to take an oral diet without fear. The quality of life for this man in his final weeks must surely have been greater than had he remained in hospital. 2) An eighty-two year old lady was admitted having been under the care of her ENT consultant for some time as an out-patient for a tumour of the right ear. Unfortunately, this had extended and was thought to be affecting cranial nerve function. A swallowing assessment was requested as she had been coughing on fluids and appeared distressed. This lady, whilst experiencing some cognitive impairment, was able to voice her choices clearly. As she had previously undergone radiotherapy, xerostomia (dry mouth) was a problem for her. She had chosen to avoid oral intake apart from fluids which had become extremely important to her to the extent that she liked to be able to see a water jug beside her bed. Bedside assessment indicated reduced oral control and probable airway entry pre/during the swallow. The swallow itself appeared inconsistent not always achieving complete laryngeal elevation. Cough reflex was strong but constant coughing was distressing for this lady. Therapy options were limited but we were able to advise her and nursing staff regarding optimal posture, bolus size, rate of intake and supra-glottic swallow. In addition, changes were made to her mouth-care regime. This appeared to enhance her well-being as well as allowing her family to see her looking more comfortable . Had we avoided intake of fluids, this lady and her family would undoubtedly have experienced a great deal of distress.
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