Beginnning of the End

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International Journal of Speech-Language Pathology, 2010; 12(4): 304–308

COMMENTARY

Beginning of the end? Ending the therapeutic relationship in palliative care

JUSTIN W. G. ROE
1

1

& PAULA LESLIE2

The Royal Marsden Hospital NHS Foundation Trust, London, United Kingdom, and 2University of Pittsburgh, Pittsburgh, PA, USA

Abstract Hersh (2010) raises important issues regarding the ending of the therapeutic relationship. In this paper, we will explore this concept in relation to speech-language pathology (SLP) and palliative care. Palliative care aims to affirm life and minimize the complications of life limiting disease. Speech-language pathologists (SLPs) work with people with progressive and life limiting disease as rehabilitation experts but often work independently of specialist palliative care teams. Rehabilitation may seem incongruent with palliation but SLPs have a vital role in the empowerment of patients with communication difficulties and symptom reduction through specialist dysphagia management and communication therapy. This is vital in the last months and weeks of life. Starting and closing episodes of care remains a challenging area for therapists. SLP membership of palliative care multidisciplinary teams is limited and there may be a lack of understanding between professionals regarding the SLP role. In this paper we will use case studies and the palliative care literature to define a role for rehabilitation and the transition from supportive to palliative rehabilitation and closing episodes of care.

Keywords: Palliative care, rehabilitation, discharge, speech-language pathology, end of life care.

You matter because you are you. You matter to the last moment of your life and we will do all we can not only to help you die peacefully, but to live until you die (Dame Cecily Saunders, 1969)

The speech-language pathology (SLP) profession is involved in patient care across the lifespan. The word rehabilitation suggests a return to function following a medical event. In some client groups, this term is absolutely appropriate, for example in some adults with voice disorders. When working with adults, it could be argued that rehabilitation rarely returns individuals to pre-morbid function. More often, SLPs working with adults understand that rehabilitation interventions will aim to minimize the effects of changes in health status and optimize function, whatever the mechanism for example following an acute neurological injury or head and neck cancer treatment. In recent years, there has been an increase in literature highlighting the role for SLP in palliative care (Cohen, Elackattu, Noordzij, Walsh, & Langmore, 2009; Eckman & Roe, 2005; Langmore, Grillone, Elackattu, & Walsh, 2009; Pollens, 2004; Roe, 2004, 2005; Roe, Leslie, & Drinnan, 2007).

The palliative care movement has broadened its practice from a primarily oncological focus to a wider range of diseases. The acute and community SLP can expect a caseload which includes patients with diverse conditions such as progressive neurological diseases, chronic-progressive cardiopulmonary diseases and cancer. As disease progression becomes more evident, rehabilitation may seem incongruous with the nature of the condition. SLPs may experience a dilemma: ‘‘what is my role with this patient?’’; ‘‘what are the goals of treatment?’’; ‘‘how do I measure the outcomes of my intervention?’’; ‘‘when and how do I discharge this patient?’’. In this paper, we will define terminology relating to rehabilitation in the palliative care setting and challenges that may impact on service delivery and the process of discharge. Case studies will be used to illustrate a variety of discharge scenarios. While many of the concepts discussed in this paper may have dual application for both children and adults, paediatric palliative care is a distinct and specialist field and we would refer people to dedicated texts in this area for further information (Brown & Warr, 2007; Goldman, Hain, & Liben, 2006).

Correspondence: Justin Roe, Research Speech and Language Therapist, Head and Neck Unit, The Royal Marsden NHS Foundation Trust, Fulham Road, London SW3 6JJ, UK. Tel: þ44 (0)207 808 2815. Fax: þ44 (0)207 808 2336. E-mail: [email protected] ISSN 1754-9507 print/ISSN 1754-9515 online ª The Speech Pathology Association of Australia Limited Published by Informa UK Ltd. DOI: 10.3109/17549507.2010.485330

Palliative care Defining rehabilitation in palliative care Functional impairment resulting from life threatening disease can lead to significant psychosocial issues for patients (Cheville, 2001). To understand the role of the SLP and discharge issues, it is important to understand the definition of palliative care and rehabilitation in life limiting illness. National Institute for Clinical Excellence defines supportive care as ‘‘helping the patient to maximise the benefits of treatment and to live as well as possible with the effects of the disease’’ (NICE, 2004, p. 18). Palliative care is defined as ‘‘the active holistic care of patients with advanced progressive illness’’ and ‘‘the achievement of the best quality of life for patients and their families’’ (NICE, 2004, p. 20). Four levels of rehabilitative intervention have been suggested: preventative, restorative, supportive and palliative (Dietz, 1981), the latter two relating to ‘‘life limiting disease’’. Dietz described supportive rehabilitation as supporting people through decline when the disease is progressive but stable, and supporting people to remain as functional as possible while retaining choice and control. Palliative rehabilitation assists in symptom control in progressive disease and in its advanced stages. Palliative rehabilitation also aims to prevent or minimize associated complications and optimize quality of life. It has also been suggested that the term rehabilitation may be misleading in the context of palliative care and that active readaptation may be a more representative term for clinicians and patients working with patients with life limiting disease (Gillam, 1995). A central challenge to rehabilitation in palliative care is striking a balance between optimal function and comfort (Santiago-Palma & Payne, 2001). Rehabilitation in palliative care and competing issues Traditionally cancer rehabilitation has focused on optimizing function following cancer treatment, during the treatment process and following cure or remission from disease (Santiago-Palma & Payne, 2001). Rehabilitation is often seen as an ‘‘optional extra’’ and terminally ill patients may not be seen as worthwhile candidates for rehabilitative interventions (National Council for Hospice and Specialist Palliative Care Services, 2000; Santiago-Palma & Payne, 2001). Another consideration is what level of intervention the patient would wish to have from an SLP in the context of competing concerns. Patients may be more concerned about issues such as pursuing further cancer treatment, financial security of their families and adapting to changes in appearance. Rehabilitation may seem trivial or inappropriate and

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may account for the limited number of patients referred for rehabilitation (Cheville, 2001). SLPs should adopt a flexible approach which anticipates change so that goals can be adjusted accordingly. Patients and families should play an active part in goal setting alongside consideration of current medical status, cognitive ability and prognosis (Santiago-Palma & Payne, 2001). SLPs must consider how the locus of control of the disease influences their perception and that of their patients. SLPs may feel ‘‘rejected’’ when a patient or their family refuse services. If SLPs are truly working from an evidenced-based practice perspective they will understand that the patient’s values and beliefs are a cornerstone of the plan for intervention. SLPs will advise from their professional perspective of clinical expertise but will respond positively and supportively when the patient or family chooses intervention that does not necessarily follow the ‘SLP expert’ advice prescription. Increasing disability and dependence on carers are distressing concerns for patients (Cheville, 2001). With improvements in early detection and treatment strategies, for many illnesses such as cancer, diseases which may have been imminently life-threatening in the past are now chronic, meaning patients may have palliative care needs over a longer period. The emphasis has shifted in these cases to quality of survivorship (Department of Health, Macmillan Cancer Support & NHS Improvement, 2010). The SLP has a role in symptom control and minimizing the impact on quality of life when addressing swallowing and communication difficulties in palliative care. This SLP component may not be appreciated where services do not have formal access to SLP provision. Professional training may provide little to prepare the student SLP for working with patients with life limiting disease and issues such as goal setting and discharge within this context. The physiotherapy literature has reported a positive experience for students on placement in the palliative care setting. Despite the emotional demands on students, the palliative care environment was seen as a positive, motivating and supportive learning environment where respect for the views of all healthcare professionals were taken in to consideration (Morris & Leonard, 2007). Students did feel that their professional training did not prepare them for working in palliative care and that further post graduate training is required. Discharge By nature of the life threatening disease, discharge is often determined by the disease and death. The lack of literature relating to discharge of the palliative care patient from allied health professional services may reflect the challenges experienced. The literature often refers to discharge as being the transition from one care setting to another or at the point of death

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J. W. G. Roe & P. Leslie over emphasized yet SLP posts within the multidisciplinary palliative care team are limited. In our experience, it is the opportunity for multidisciplinary working which can facilitate good quality closure of care episodes. In palliative care, there is a culture of boundary blurring which can ensure that a well informed team can monitor for changes and advise the SLP should more specialist intervention be required. The use of a multidisciplinary assessment which can effectively channel referrals should be available to professionals, drawn from guidance such as that provided in the Holistic Common Assessment of Supportive and Palliative Care Needs for Adults with Cancer (Cancer Action Team, 2007). Sensitive withdrawal and maintaining hope within the context of deteriorating disease is a challenge. When working with patients with progressive diseases, it is possible that the relationship with the patient and their family had developed and while the communication and dysphagia interventions are central, a supportive role may well have been established. This is particularly relevant when the structure of medical services is considered. In the UK, doctors rotate between specialties and SLPs may be one of a few healthcare professionals who are constant throughout the patient journey. Support for clinicians Clinical and professional supervision is an important consideration in managing caseloads and may extend beyond SLP specific clinical need. An opportunity for reflective practice is also valuable in developing specialist skills, although recognition of the need for such services may vary between centres. The authors’ experience within the hospice environment is the provision of reflective practice sessions with a clinical psychologist to address wider issues such as bereavement and challenging patient-clinician dynamics. Our students would be better prepared if we taught them that our aim may not to ‘cure’ but to do as much as is possible. This may not be as much as the student or clinician would like but this would hopefully reduce the feelings of guilt. We live in a culture where death remains a taboo and the students coming into our programs have grown up in this. They learn from teachers who will usually be of the same culture so the cycle is hard to break. Healthcare has a mission to cure and to save and when a patient dies there is the feeling of failure (Tucker, 2009). We need to consider carefully how to educate our future professionals to work in palliative care (and other fields) so they can work with death as an unavoidable event but that the care they provide is crucial to helping a patient and their family die a good death. Most education is centred on SLPs resolving disorders (e.g., when working with paediatric speech and language issues or voice disorders). Such complete resolution is not possible in many disorders

rather than termination of rehabilitation intervention. For many SLPs the thought of working in palliative care may not be anticipated or recognized at the outset of their training or professional career. Education is limited in preparing SLPs for clinical practice and the challenges of caseload management in this unique setting. As we have discussed, goal setting with patients should be clearly defined at the outset. Several factors have been cited which may affect a person’s suitability and commitment to the rehabilitation process. They include to what level the patient accepts their disease, expectations of therapy and life priorities. With reference to cancer, authors have suggested that if there is any uncertainty about the aims and appropriateness of therapy, therapists should ask ‘‘Are the goals humane and ethical in the unique context of each patient’s cancer, and do they reflect the patient’s wishes’’ (Cheville, 2001, p. 1040). A key challenge is to know when to step back and allow others with a more appropriate role to take over (National Council for Hospice and Specialist Palliative Care Services, 2000). We must recognize the impact that clinician withdrawal may have on patients and their families. It may signify the beginning of the end. Hersh (2010) cites Coltart, who states the clinician’s job is to prepare our patients for discharge. In our experience patients often receive a significant amount of input from a wide range of professionals during the course of their illness and this may change in the latter stages of the disease process. We need to start the process of discharge from the outset of our involvement and not at the end of our ‘term of care’. This would keep the locus of control with us and the patient/family and not leave any of us feeling out of control later on and at the ‘mercy of the disease itself’. Even in the extreme situation of undeniable approaching death we need to bear this in mind. If we talk about the possible changing priorities of the patient and their family as the disease progresses, then these changes and the clinician’s changing involvement will not come as such a shock. It is important that rehabilitation services are not introduced in isolation in the terminal phases of the disease. Rather they should be one element in a comprehensive multi-disciplinary package of care throughout the disease trajectory. As rehabilitation shifts from supportive to palliative care, intervention will lean to compensation rather than active rehabilitative approaches to reduce the risk of compounding symptoms, for example when working with dysphagia. There should be recognition of the ethical and practical dilemmas experienced by SLPs. They may be working in isolation or as part of more generic rehabilitation teams and lack the levels of clinical supervision and guidance required. The importance of multi-disciplinary working cannot be

Palliative care and may not be possible at all in palliative care. We may always feel regret at the passing of a patient in our care but we should not feel guilt or that we did not do all we could.

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Case studies Case study 1 Mr. M aged 38 was diagnosed with motor neurone disease. In addition to dysphagia, he presented with severe dysarthria with increasingly frustrating communication difficulties. He had a gastrostomy feeding tube in place and was electively nil by mouth. He had been reluctant to accept communication aids initially and with disease progression and deterioration of motor function, had been frustrated with the increased time and effort required for communication with his wife and two young children. His focus had remained exclusively on ‘hi-tech’ communication aids. Despite regular sessions to optimize his communication and the environment, he indicated he did not want further input. It was emphasized that a review would be offered on request. Three months later, his wife requested a review. He had deteriorated significantly and was felt to be entering the final stages of his disease. Communication had remained a major issue for him and the family. The SLP revisited ‘low tech’ aids including an alphabet chart and picture board and instructed his family how to support Mr. M. Successful reintroduction of these tools ensured that he was able to communicate with his family as well as his needs and symptom issues to carers and medical staff until his death 3 weeks later. Case study 2 Mrs. Y aged 58 was diagnosed with metastatic breast cancer. Admitted for terminal care at the hospice, she was experiencing significant xerostomia likely compounded by her opiate medication. She was profoundly fatigued with no appetite but was requesting drinks regularly. Her family was providing drinks but saw she was experiencing distressing coughing episodes. Following a clinical swallow assessment, advice was given to the family to offer more control to the patient. The more controlled rate of intake greatly reduced the coughing episodes. As well providing swallowing education to the nursing staff and family, recommendations included regular opportunities for mouth care and a mouth gel to address xerostomia. A review was arranged but the patient deteriorated quickly and died peacefully with her family at her side. Case study 3 Mr. X aged 68 was diagnosed with advanced metastatic renal cell carcinoma. He was admitted

to the hospice for symptom management and possible terminal care. On assessment, it was found that he had become profoundly weak and dehydrated due to a lack of nutrition and hydration. He reported a fear of choking due to feeling as if food was sticking in his throat. He was referred for an SLP evaluation and was well enough to undergo a videofluoroscopic swallow assessment following the clinical swallow assessment. The videofluoroscopic swallow study showed a weak swallow with mild residue in the valleculae due to reduced base of tongue contact with the posterior pharyngeal wall. A chin tuck posture improved approximation of the tongue base to the posterior pharyngeal wall and improved bolus clearance (Logemann, 1998). Mr. X viewed the videofluoroscopic swallow study with the SLP. Reassured, he resumed some oral intake and medication was modified to account for his difficulty. He was reviewed and discharged by the SLP prior to leaving the hospice. Community Palliative Care Nurses and the family physician monitored his dysphagia status. He lived at home with no exacerbation of his dysphagia in the following 4 months before he was admitted for terminal care. These case studies illustrate a range of clinical scenarios where discharge was dictated by a resolution of a particular clinical issue, patient choice or death. They also highlight the importance of the SLP role in education of carers and respect for patient autonomy and timing of intervention. Conclusions Palliative care is a unique area of healthcare. Discharge is more likely to be defined by deterioration and death although interventions by SLPs may be clearly defined episodes of care in the case of more stable disease. Working in this area requires a patient led approach to rehabilitation, recognizing that patient autonomy may not always correlate with the therapist’s goal of beneficence and SLP related issues may not be a priority. SLP should be part of a comprehensive palliative care service working within a multi-disciplinary team where there is mutual awareness of roles and clinical red flags. Where core membership of the palliative care multi-disciplinary team is not possible, formal links such as regular attendance at multidisciplinary meetings where patient care is discussed should be sought by way of education and information sharing for both the SLP and palliative care practitioners. In order to develop the specialist clinical and palliative care skills required in this complex area, SLPs should have a basic foundation in palliative care as part of pre-professional training. This might require a major culture change in how we in the profession perceive our role. As practitioners in palliative care, there should be access to appropriate supervision including opportunities for reflective practice with specialist support.

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J. W. G. Roe & P. Leslie
Gillam, L. (1995). Palliative care. In B. Pickles, A. Compton, C. Cott, J. Simpson, & A. Vandervoort (Eds.), Physiotherapy with older people (pp. 305–322). London: WB Saunders. Goldman, A., Hain, R., & Liben, S. (Eds.). (2006). Oxford textbook of palliative care for children. Oxford: Oxford University Press. Hersh, D. (2010). I can’t sleep at night with discharging this lady: The personal impact of ending therapy on speech-language pathologists. International Journal of Speech Language Pathology, 12, 283–291. Langmore, S. E., Grillone, G., Elackattu, A., & Walsh, M. (2009). Disorders of swallowing: Palliative care. Otolaryngology Clinics of North America, 42(1), 87–105. Logemann, J. A. (1998). Evaluation and treatment of swallowing disorders. Austin, TX: Pro-Ed. Morris, J., & Leonard, R. (2007). Physiotherapy students’ experiences of palliative care placements: Promoting interprofessional learning and patient-centred approaches. Journal of Interprofessional Care, 21, 569–571. National Council for Hospice and Specialist Palliative Care Services. (2000). Fulfilling lives: Rehabilitation in palliative care. London: National Council for Hospice and Specialist Palliative Care Services. National Institute for Clinical Excellence (NICE) (2004). Improving supportive & palliative care for adults with cancer. London: NICE. Pollens, R. (2004). Role of the speech-language pathologist in palliative hospice care. Journal of Palliative Medicine, 7, 694–702. Roe, J. (2004). Towards the end of life: The development of a hospice based palliative care service. Bulletin: The Royal College of Speech and Language Therapists, Jan (621), 12–13. Roe, J. (2005). Oropharyngeal dysphagia in advanced non-head and neck malignancy. European Journal of Palliative Care, 12, 229–232. Roe, J. W., Leslie, P., & Drinnan, M. J. (2007). Oropharyngeal dysphagia: The experience of patients with non-head and neck cancers receiving specialist palliative care. Palliative Medicine, 21, 567–574. Santiago-Palma, J., & Payne, R. (2001). Palliative care and rehabilitation. Cancer, 92(4 Suppl), 1049–1052. Tucker, T. (2009). Culture of death denial: Relevant or rhetoric in medical education? Journal of Palliative Medicine, 12, 1105–1108.

The development of specialist SLP services is increasingly dependent on development of the evidence base. SLPs need to publish case studies and examples of innovative practice in palliative care. With further establishment as part of multi-disciplinary team both collaborative and profession specific research can take place to explore the issue of discharge involving both practitioners and patients. Acknowledgements We would like to acknowledge Helen White at the Royal Marsden NHS Foundation Trust for her comments on earlier versions of this paper.

References
Brown, E., & Warr, B. (2007). Supporting the child and the family family in paediatric palliative care. London: Jessica Kingsley Publishers. Cancer Action Team. (2007). Holistic common assessment of supportive and palliative care needs for adults with cancer: Assessment guidance. London: Cancer Action Team. Cheville, A. (2001). Rehabilitation of patients with advanced cancer. Cancer, 92(4 Suppl), 1039–1048. Cohen, S. M., Elackattu, A., Noordzij, J. P., Walsh, M. J., & Langmore, S. E. (2009). Palliative treatment of dysphonia and dysarthria. Otolaryngology Clinics of North America, 42(1), 107– 121. Department of Health, Macmillan Cancer Support and NHS Improvement. (2010). The national cancer survivorship initiative vision. London: Department of Health. Dietz, J. (1981). Rehabilitation oncology. New York: John Wiley & Sons. Eckman, S., & Roe, J. (2005). Speech and language therapists in palliative care: what do we have to offer? International Journal of Palliative Nursing, 11(4), 179–181.

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