CPD: The non-pharmacological nursing management of dyspnoea in end-stage respiratory disease and palliative care populations

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1 CPD: The non-pharmacological nursing management of dyspnoea in end-stage respiratory disease and palliative care populations David Stephenson, Flinders University and Annie McHugh, Southern Adelaide Palliative & Support Services After reading this article it is anticipated that the reader will be able to identify 1. Current care pathways for the treatment of dyspnoea in the palliative setting. 2. Discuss current practice trends associated with nurse-led dyspnoea clinics. 3. Outline the components of the interventions of the dyspnoea. Breathing is truly a strange phenomenon of life, caught midway between the conscious and the unconscious and particularly sensitive to both. (Richards 1953 p.15) Defining dyspnoea The urge to breathe is one of the strongest impulses we experience. Dyspnoea occurs when the act of breathing does not satisfy the urge to breathe (Adams & Gus 1996 p.11). In ways that closely parallel good definitions of pain, dyspnoea needs to be understood as both a subjective sensation and an experience that can be compounded or ameliorated by a wide range of social, emotional, spiritual and environmental factors. For people living with end-stage respiratory disease or advanced malignancy, dyspnoea is frequently a multi-factorial symptom in which the awareness of effort seems to be common to all circumstances and dominant in most (Adams & Gus 1996 p.11). The American Thoracic Society (1999) reiterates this point in their definition of dyspnoea as a subjective experience of breathing discomfort that consists of qualitatively distinct sensations that vary in intensity (p321). David Stephenson RN BN MPallC MRCNA Clinical Nurse, Southern Adelaide Palliative & Supportive Services Senior Lecturer, School of Nursing & Midwifery, Flinders University Annie McHugh RN, Grad. Cert Respiratory Nursing, Grad Cert in Health (Palliative Care) Grad. Cert (Coronary Care). Clinical Nurse, Southern Adelaide Palliative & Supportive Services Incidence in palliative care populations Although the incidence and degree of distress associated with dyspnoea increase when patients are afflicted with primary or secondary malignancy affecting the lungs or respiratory tract, dyspnoea can affect between 50-70% of all patients with malignant disease (Heyse-Moore, Ross et al. 1991; Bailey 1997; Dudgeon & Lertzman 1998; Corner & O Driscoll 1999; Bruera, Schmitz et al. 2000; Edmonds, Higginson et al. 2000). Chan, Sham et al. (2004) and Dudgeon & Lertzman (1998) report that between 19-55% and 28-50% respectively, grade their experience of this symptom as moderate to severe. Other authors put this figure as high as 90% during the period leading up to death (Muers & Round 1993; Tarzain 2000). Ripamonti & Bruera (1997) note that 24% of all dyspnoeic cancer patients do not have any cardiac or pulmonary pathology. For many patients with a life-limiting illness arising from malignancy, the onset of dyspnoea as a new symptom can be a very frighting marker of disease progression and a dreaded portent of things to come. Paradoxically, mild dyspnoea, not unlike mild pain, can often be masked by patients and easy for clinicians to ignore. Prompt recognition and early discussion and intervention are therefore vital in offsetting the fear this symptom creates and the creeping burden it places on patients and their carers when left unrecognised and untreated. A broad reading of the literature supports Roberts, Thorne et al s (1993) observation that patients generally receive little or no emotional support during acute episodes of dyspnoea and inadequate practical education at other times to assist them to take control over dyspnoea. Dyspnoea in end-stage respiratory disease For patients with chronic respiratory diseases, dyspnoea is often insidious in onset, and with years of adaptation to the experience, breathlessness, even beyond a moderate form, can easily be overlooked by clinicians, carers and patients alike. By the end-stages of chronic respiratory disease, clinicians, by and large, expect that patients have assumed the enormous symptom burden associated with dyspnoea, and have learned, as much as is possible, to live with the limitations and frustrations that such a symptom imposes. The end stage of these diseases are characterised by increasingly frequent episodes of acute exacerbation requiring hospitalisation and active intervention and symptom management. In general terms, severe refractory dyspnoea, cachexia, increasingly frequent exacerbations, longer hospital admissions with Collegian Vol 11 No

2 diminishing return of functional status, together herald the onset of the terminal stages of these diseases. The challenges of managing dyspnoea Dyspnoea as a symptom continues to rank highly in the top ten symptoms reported by terminally ill patients and is as difficult to manage now as it was 20 years ago (cf incidences cited by Wilkes in 1974 quoted in Enck (1989) with those cited by Rawlinson (2000). Current management Despite a large and growing body of literature pertaining to the pathophysiology associated with dyspnoea, Madjar (1998) states that we still remain ignorant as to its causes and why some patients display more distress than others. Much of the effort to manage breathlessness has thus far focused on the treatment of underlying causes or on pharmacological strategies. Drings (1997) and Chan, Sham et al. (2004) amongst others provide a comprehensive guide to the interventions that are available to investigate and alleviate dyspnoea in cancer patients. Many are of course not without risk of increased morbidity and mortality, and Booth (1998a; 1998b) reminds us that the general condition and nearness to death should dictate the suitability of such interventions. A more global perspective and approach is required to properly balance out the needs, benefits and burdens associated with the range of possible interventions that are available for the investigation and treatment of the causes of dyspnoea (as cited by Drings). So too will such considerations also dictate the appropriateness of the range of non-pharmacological nursing interventions described below. Primary causes of dyspnoea in the palliative population: (adapted from Chan & Sham p 590) Pulmonary: Lung malignancy Airway collapse Bronchial obstruction Consolidation Infection Fibrosis Lymphangitis Embolism Radiation damage Cardiac: Ischaemic heart disease Cardiac failure Pericardial disease SVC obstruction Pleural: Embolism Pneumothorax Effusion Psychological: Anxiety Panic Hyperventilation Other: Anaemia Diaphragmatic (tumour or ascites) Cachexia Ripamonti (1999) surveyed the literature on breathlessness in palliative care populations, and listed many causes. Some are associated with the disease or its treatment, but many (eg. Asthma, COPD and heart failure) co-exist with the diagnosis of cancer (Reuben & Mor 1986). A full assessment, including history taking and clinical examination, can elicit information leading to diagnosis of the cause of breathlessness. Medical interventions such as radiotherapy and chemotherapy can provide excellent temporary relief, as can paracentesis and blood transfusion. (Higginson & McCarthy 1989; Chan, Sham et al. 2004). Beyond the role of radiotherapy however, much of the current clinical management literature continues to focus on the limited array of pharmacological management strategies, namely: Opioids to reduce the sensation of breathlessness Bronchodilators to improve air entry Steroids to reduce bronchospasm and obstructive inflammation Antibiotics to combat infection Anxiolytics to reduce panic Oxygen to relieve hypoxia (Bruera, Macmillan et al. 1990; Hanratty & Higginson 1994; Davis 1997; Brant 1998; Le Grand & Walsh 1999; Ripamonti 1999; Rousseau 2002; Chan, Sham et al. 2004) Despite the frequency and severity of irreversible dyspnoea in palliative care, clinical management practices have not yet become standardised across the international palliative community. In a recent International Palliative Care Conference (Palliative Care in Respiratory Care 2001 Mexico) Manning, quoted by Levy (2001) suggested that from an evidence-based perspective only opioids and supplemental oxygen have been demonstrated to have a significant beneficial effect on dyspnoea. While the role and efficacy of bronchodilators have been well established in COPD, their effect has been poorly researched within palliative care populations. A single arm study within this population found that 49% of the trial participants had reversible airflow obstruction, yet only 5% were using bronchodilator therapy (Congleton & Muers 1995) When comparing the transformation in pain management practices, with the opening up of an array of new pharmacotherapeutic fronts, and considerable investment in receptor modelling, efficacy studies and large multi-centre randomised controlled effectiveness studies that have taken place over recent decades, meagre progress has been made in advancing our understanding and management of dyspnoea. As suggested earlier, the symptom is approached both conceptually and clinically in much the same way as it was 20 years ago; opioids, oxygen and benzodiazepines continue to be reiterated as the mainstay of treatment (Davis 1997; Le Grand & Walsh 1999; Rousseau 2002). The nursing approach Cox (2002) asserts that most of the interventions associated with the management of dyspnoea are based on a medical model in which they are mostly done to the patient, with the patient in a compliant role and the nurse supporting that role (p.33). Holistic models of nursing, as described by McMahon (1991) amongst many, places the patient in an active partnership with nurses, who use their skills creatively to assist the patient in his or her quest for health (Cox 2002 p.33). In the context of end-stage respiratory disease and palliative care populations, health is constructed as the ability to live well within the limits and confines of her or his capacity and disease (Cox p33). As Krishnasamy, Corner et al (2001) state;... although there has been a recognition of a psychological or emotional component [in the management of dyspnoea] this is often presented as being something separate or distinct from the symptom as physiologically defined... in other words, breathlessness has predominantly been approached through a reductionist perspective, an approach increasingly recognised as being of limited value in minimizing the distress caused by this complex problem (p.3) 38 Collegian Vol 11 No

3 CPD: The non-pharmacological nursing management of dyspnoea in end-stage respiratory disease and palliative care populations The development of nurse-lead dyspnoea clinics as a non-pharmacological nursing intervention The forerunner of the new nurse-lead dyspnoea clinics that are now firmly established across the UK lay in the work of pulmonary rehabilitation programs and the clinics designed to follow up and help maintain COPD patients post rehabilitation (Corner, Plant et al. 1996). The principal goals of pulmonary rehabilitation are to reduce symptoms, improve quality of life and increase physical and emotional participation in everyday activities. To accomplish these goals pulmonary rehabilitation covers a range of non-pulmonary problems including exercise deconditioning, relative social isolation, altered mood states (especially depression), muscle wasting and weight loss. These rehabilitation programs focussed on utilised breathing retraining, relaxation, adaptation and coping strategies along with counselling support (Gift, Moore et al. 1992). Meta analyses by Devine & Pearcy (2002) and Guell, Casan et al. (2000) report that A-level evidence exists for a reduction in dyspnoea, an increase in exercise tolerance and improved quality of life. The GOLD study (1996; Pauwels, Buist et al. 2001) suggests that these benefits can be maintained for at least two years post rehabilitation providing regular follow up through a respiratory nursing clinic or physician clinic is maintained. Despite this efficacy evidence, effectiveness of this intervention in the UK has been marginalised by lack of uptake. Pauwels, Buist et al. (2001) reported that in that year fewer than 2% of COPD patients undertake respiratory rehabilitation, and The British Thoracic Society (2002) also found that 60% of GPs had no understanding of such rehabilitation programs. The extent of uptake of respiratory rehabilitation programs fro COPD patients in the Australian setting has not been documented. Drawing on the experiences of respiratory nurses, COPD patients and these pulmonary rehabilitation programs Corner et al (1996) undertook a study into non-pharmacological interventions for breathlessness in lung cancer patients. The intervention was designed to draw on conceptual relationship between shared decision-making and enhanced patient education leading to increased self-care of symptoms and greater patient and carer empowerment, as promoted by theorists and authors such as Grahn (1998) and Benor et al (1999). Randomisation during the initial study was halted at the request of nursing and medical staff, who noted clear benefits for the patients receiving the intervention. Although the truncated sample size was small (intervention n=11, control n=9) analysis of available data found that after 12 weeks of weekly clinic visits, the intervention group experienced median improvements from baseline of 35% for breathlessness at worst, 53% for dyspnoea induced distress, 17% for functional capacity along with a 21% reduction in difficulty performing ADLs. The scores for the control group either remained static or worsened over the length of the study period. In the second phase of this research program Bredin, Corner et al (1999) went on to preform a multi-centre RCT, which lead to the incorporation of the results these two studies into the Macmillan Practice Development Unit project titled Managing Breathlessness in Lung Cancer. Bredin, Corner et al s (1999) randomised control trial involved 119 patients from 6 UK hospitals where clinics were led by specialist cancer nurses including Macmillan Nurses. The patients all had a diagnosis of either mesothelioma or small cell or non-small cell lung cancer, had completed first-line treatment for their disease, and reported breathlessness. Patients enrolled in the intervention arm were seen at a nurse-led clinic, while the control group were given standard care. The levels of dyspnoea, and its effects on the lifestyle and functional status of the sample were monitored for 8 weeks. At the start of the trial participants in both arms reported high levels of dyspnoea-related distress and functional impairment. Although there was no difference in overall survival, global quality of life scores, or scores for dyspnoea at worst and psychological distress between the two groups at the end of the 8 week period, the intervention group showed significant improvement in scores for dyspnoea at best, WHO performance status, depression, physical symptom distress. The intervention also resulted in slight improvements in dyspnoea induced distress and levels of anxiety. Corner et al s original 1996 study assessed patients from remission to end-stage disease, and found that elements of the nursing interventions could be used at all stages. This is a crucial finding, given the reported under-utilisation of such non-pharmacological interventions during the terminal care phase where such measures as positioning and fan therapy and when pharmacotherapy is often seen as an easy option for a difficult and intractable symptom. From research to practice: the interventions of the dyspnoea clinic. The experience of the nurse-led dyspnoea clinics involved in these two research initiatives was instrumental in the development and role out of the subsequent train-the-trainer courses throughout the United Kingdom which followed on from the successes of the second phase of the research. Unique to these nursing clinics is the integrative model of breathlessness, in which the emotional experience of breathlessness is considered inseparable from the sensory experience and the biological mechanisms. The experiences of nurses working in the dyspnoea clinics confirms the extent to which, anticipatory anxiety and the emotional flow on the experience of breathlessness have a profound influence on how dyspnoea is managed in practice (Krishnasamy, Corner et al. 2001). Bailey (1995) argues that; symptoms are sometimes generalized too much. Experience is particular, not universal, and an open, accepting and therapeutic approach to managing illness has to be involved with messy and sometimes frightening emotions (p.187) Unlike much of the research literature surrounding dyspnoea management, Cox (2002) Bredin et al(1999), and (Bredin 2003) provide much needed description of the interventions and the rationale behind their use. The suite of interventions that form the basis of the work carried out by specialist nurses in dyspnoea clinics are founded on the following: A detailed physical assessment focussing on breathlessness, its qualitative and quantitative features and its ameliorating and exacerbating factors. Advice and support for patients and their families on ways of managing breathlessness. Training in breathing control techniques, progressive muscle relaxation, and distraction exercises. Collegian Vol 11 No

4 Goal setting to complement breathing and relaxation techniques, to help in the management of functional and social activities, and to support the development and adoption of coping strategies. Early recognition of problems warranting pharmacological or medical intervention. Exploration of the meaning of breathlessness, their disease, and feelings about and plans for the future. These concepts can be explained in a more fundamental way by the formation of a more readily accessible tool devised by the authors of this paper. The mnemonic BREATHE is described simply as: BREATHE Breathing retraining Relaxation techniques Energy expenditure modification Anxiety management: Tools dysponea measurement scales and patient education diaries Help or hinder (ameliorating or exacerbating factors) Emergency plan McHugh and Stephenson, 2004 The subtle complexity of dyspnoea as both a symptom for patients and a clinical management challenge for nurses has prompted authors such as Connolly & O Neill (1999), Krishnasamy (2001) and Cox (2002) to stress the expertise and advanced nature of the practice of the specialist nurses working in dyspnoea clinic. Cox (2002) also notes the extent to which the lack of detailed description and advanced training in the integration of those interventions cited above represent the greatest barriers to informed practice and improved care outcomes for patients with dyspnoea. Review comments I agree that this would be a fantastic advancement and achievement for the nursing-led management of dyspnoea, and would very much represent evidence-based best practice. The health context in the UK is of course different to here in Australia, and the funding for such clinics will not be easily established. There are people also within the nursing profession who are warning of being too specialised, and would argue that this role should be a part of a specialist palliative care nurse role in both the inpatient and community setting. A good article with much merit. Mr Mark Cockayne RN Palliative Care Nurse Cabrini Palliative Care Service, Prahran Reviewers comments There is little doubt that dyspnoea in end-stage disease must rank as highly as pain in terms of its potential for causing severe distress for both patients and their families and confronts nurses with a major clinical challenge in attempting to effectively manage dyspnoea and its sequalae. David Stephenson and Annie McHugh provide us with a brief yet valuable insight into the practice of specialist nurses in respiratory palliative care and the unique contributions that are emerging from this practice area. The concept of specialist nurse led clinics, Conclusion The research reviewed in the above section points to the reproducible success of the nurse-led dyspnoea nursing clinics as an effective means of achieving substantial and sustained improvement in dyspnoea in people with end-stage chronic and malignant respiratory disease It is not difficult to conclude, on the basis of a review of the research literature and the reported practice experiences of clinic nurses in the field, that it is the nurse-led clinic itself that is the critical component in the intervention. The presence of a nurse-led clinic, staffed by expert specialist nurses who provide care, education, guidance and support to dyspnoeic patients along with clinical advice and consultation to other care providers, represents the most important innovation in this area of care. In order to respond adequately to the unmet needs of people with end-stage chronic and malignant respiratory disease, three things are required in the Australian context. 1. Dyspnoea clinics need to be elevated to the status of a firstline clinical management strategy rather than a tertiary component of care. 2. Healthcare systems planners need to invested resources and vision in the development and support of dyspnoea nurse specialists and the organisational infrastructure and material support necessary for the implementation of these clinics. 3. Nurses need to respond to the challenge implicit in the best-available evidence, forge a path toward clinical excellence and take on leadership roles in the innovation of new models and practices on dyspnoea management in the Australian context. whilst not new, remains an exciting area of practice development with potential for making significant positive contributions to patient care. The authors provide a valuable overview of the aetiology and treatment of dyspnoea in both malignant disease and in end-stage respiratory disease. I m not sure that I completely agree with the dichotomous presentation of the medical/symptomatic/ pharmacological treatment of dyspnoea with that of the holistic nursing approach as presented in the article. I accept that for the purposes of differentiation the dichotomy may be useful however I suspect that the differences may not generally be as marked. The evidence for the effectiveness of nurse led clinics appears robust and there is no doubt that there is a need in this country for such services as there is for pulmonary rehabilitation programs. These needs will only increase with the changing demography and disease profiles occurring in Australia. I believe that the authors make a convincing case for the establishment of nurse led dyspnoea clinics that have the potential to provide a valuable service to respiratory patients. I think that they also highlight the need to continue to build the research evidence of the effectiveness of such clinics and I look forward to reading the much-needed future research in this area. Associate Professor Nick Santamaria Principal Research Scientist, Ambulatory and Community Services The Alfred Hospital and University of Melbourne 40 Collegian Vol 11 No

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