European Respiratory Society
Palliative Care in Respiratory Disease

Palliative care aims to optimise function and to enhance quality of life for patients with serious and life-limiting illnesses. It focuses on reducing the burden of symptoms, and supporting patients and caregivers. This Monograph provides a comprehensive overview of palliative care in respiratory disease, including coverage of policy variations around the world, epidemiology of advanced respiratory diseases, access to palliative care and the need for care in a range of chronic respiratory diseases from chronic obstructive pulmonary disease and idiopathic pulmonary fibrosis to lung cancer and cystic fibrosis. There are detailed sections on breathlessness, focusing on symptom definition, patient and caregiver experiences, physiological mechanisms, measurement and management; and on care for patients with advanced disease who are in the terminal phases of their illness.

  • ERS Monograph
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    1. Page 1
      Joshua B. Kayser, Pulmonary, Allergy and Critical Care Division, Dept of Medicine, Dept of Medical Ethics and Health Policy, Perelman School of Medicine, University of Pennsylvania, Cpl. Michael J. Crescenz Veterans Administration Medical Center, 3900 Woodland Ave, 8B115, Philadelphia, PA 19104, USA. E-mail:

      Palliative care aims to provide enhanced quality of life for patients with serious and life-limiting illnesses. It thus focuses on controlling symptoms and supporting patients and family caregivers. Palliative care is a patient-/family-centred multidisciplinary process based on the ethical principles of beneficence (benefiting the patient) and respect for the patient's dignity and autonomy (self-determination). Palliative care should maximise quality of life for patients with advanced stages of respiratory diseases in the months, or even years, preceding death, and should reflect the preferences of patients and their families relating to how, where and when death will occur. Palliative care for patients with respiratory diseases can be challenging. Such patients have clinical courses that may vary from a prolonged recurrent waxing and waning course to a rapidly downhill course. Additionally, patients with advanced respiratory diseases may require repeated hospitalisations, including the need for aggressive LSTs with assisted ventilation in ICUs. This necessitates discussions and decisions related to withholding and withdrawing life support. Because differences in national and local cultures impact clinical practices in forgoing life support, the decision making process regarding the latter should take into account the relevant cultural context. This is especially important when considering the creation and adaptation of global healthcare policy in palliative care.

    2. Page 21
      S. Bajwah, Cicely Saunders Institute of Palliative Care and Rehabilitation, Bessemer Rd, London SE5 9PJ, UK. E-mail:

      Patients with life-limiting respiratory diseases, such as lung cancer, COPD, IPF and cystic fibrosis, have physical, psychological, social and spiritual needs. Palliative care can help meet these needs, and improve the quality of life of these patients and their families.

    3. Page 35
      Claudia Bausewein, LMU Munich, Dept of Palliative Medicine, Munich University Hospital, Marchioninistraße 15, 81377 Munich, Germany. E-mail:

      Various (integrated) service models of palliative care for both inpatient and community settings have been developed around the world. The importance of collaboration between palliative and respiratory medicine has been recognised in recent national and international guidance. However, specialist palliative care support for patients is still variable, with higher acceptance for patients with malignant lung disease and more sporadic access for patients with chronic, non-malignant lung disease. Barriers to access are related to disease trajectories, service configuration and delivery, and lack of training for both generalist and specialist palliative care. Access to palliative care is facilitated by systematic needs assessment and recognition of both disease- and symptom-related triggers to initiate palliative care.

    4. Page 51
      Morag Farquhar, Primary Care Unit, Dept of Public Health and Primary Care, University of Cambridge, Institute of Public Health, Robinson Way, Cambridge, CB2 0SR. E-mail:

      Carers play a vital role in supportive, palliative and EOL care for patients with advanced respiratory conditions. They enable patients to be cared for, and even die, in their place of choice. However, this caring role comes at a cost in terms of psychosocial distress, physical and psychological health impacts (including carer mortality), and pressure on finances. Ensuring that carers are supported can ameliorate these effects. Healthcare professionals must respond to policy rhetoric and be dramatically better at identifying carers, working with them to assess and prioritise their support needs, and responding to and reviewing those needs. Evidence-based tools and approaches exist and can help, but are not a one-off exercise. Carers' needs may change as the patient's condition (or location of care) changes, or as carer health or systems change. Carers' needs may also exist beyond the patient's death. Clinical and academic researchers need to robustly develop and evaluate interventions for carers and include appropriate carer outcomes in evaluations of patient-targeted interventions.

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      Magnus Ekström, Dept of Clinical Sciences, Division of Respiratory Medicine and Allergology, Lund University, SE-221 00 Lund, Sweden. E-mail:

      Breathlessness is the cardinal symptom of cardiorespiratory disease. It increases with disease severity and is often associated with other chronic and debilitating symptoms. This chapter reviews the prevalence and consequences of breathlessness in advanced disease and the affected (older) population, associated symptoms, and risk factors for experiencing more severe symptoms, particularly focusing on changes in breathlessness and associated symptoms over time in patients with advanced disease and nearing death.

    2. Page 85
      Sara Booth, Box 63, Elsworth House, Cambridge University Hospitals NHS Foundation Trust, Hills Road, Cambridge CB2 2OO, UK. E-mail:

      We will discuss the “construct for breathlessness” in its broadest sense to reflect the fact that breathlessness is a symptom indirectly measured and highly dependent upon a complex combination of physical sensations, thoughts, perceptions, cultural conditioning and emotional states. We will consider our progress in obtaining a common scientific understanding as well as developing a working "construct" in its clinical management. Definitions and descriptions of breathlessness have focused mostly on how clinicians and scientists understand this symptom to the neglect of formulations directly related to the implementation of clinical management and relief. We consider the need to relate the language and findings of clinical and laboratory research to the patient's need to understand and respond to their own experience of breathlessness. To this end, we will consider the diversity and evolving concepts of the nature of the symptom in the scientific community and the practicalities of applying these to patients, particularly those faced with a lifetime of suffering.

    3. Page 102
      Ann Hutchinson, Hull York Medical School, Hertford Building, University of Hull, Cottingham Road, Hull, HU6 7RX, UK. E-mail:

      Chronic breathlessness has wide-ranging, interrelated, physical, psychological, social and existential consequences for those living with it, and for family and friends who care for them. Despite this, the symptom often remains invisible to others. Recognition that breathlessness is a multifaceted symptom with extensive effects is necessary for the symptom to be managed effectively. A full assessment of the effects of breathlessness by a health professional is needed so that the patient and carer are aware that these are legitimate concerns to present to their clinician, thus countering the invisibility of the symptom.

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      Dennis Jensen, Dept of Kinesiology and Physical Education, McGill University, Montreal, QC, H2W 1S4, Canada. E-mail:

      The perception of breathlessness in the sensory (intensity) and affective (unpleasantness) domains involves the integration of respiratory efferent and afferent sensory information within cortical and subcortical neural networks. Recent advances in the visualisation of the neurobiology of breathing and physiological measurement of the neural respiratory drive (NRD) have furthered our understanding of breathlessness through the investigation of: 1) altered pulmonary physiology in symptomatic patients; and 2) the mechanisms of action of established and novel interventions. Irrespective of the underlying pathophysiology, the findings of such studies support the hypothesis that breathlessness intensity in obstructive and restrictive lung disorders reflects the awareness of increased NRD required to support ventilation, consequent to intrinsic respiratory mechanical loading and/or increased ventilatory demand. Qualitatively distinct descriptors of breathlessness (e.g. work/effort, air hunger, unsatisfied inspiration) probably involve the integration of discrete afferent inputs relative to the prevailing level of NRD. Conditioned responses are likely to underlie learned behaviours driving physical activity avoidance and breathlessness-related anticipatory fear and anxiety, contributing to the vicious cycle of functional decline in CRD.

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      Mark B. Parshall, College of Nursing, MSC07 4380, Box 9, 1 University of New Mexico, Albuquerque, NM 87131-0001, USA. E-mail:

      There are many measurement approaches and instruments for assessing the sensory-perceptual experience of breathlessness, the associated affective distress and how breathlessness impacts an individual's functioning and quality of life. Choices of which measures to use should be driven by the relevance of the measured construct(s) to the context(s) of use, and, in palliative care, by the responsiveness of measures to clinical change and by their ease of administration and scoring. Evidence of adequate psychometric performance characteristics can be viewed as necessary but not sufficient for preferring one measurement approach or instrument to another in palliative care.

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      Miriam J. Johnson, Wolfson Palliative Care Research Centre, Hull York Medical School, Hertford Building, University of Hull, Hull, HU6 7RX, UK. E-mail:

      Effective interventions for chronic breathlessness exist and are distinct from interventions directed at the pathophysiology of the medical condition causing the breathlessness. Some, like pulmonary rehabilitation, have been accepted by the clinical community and are integrated into respiratory care, at least in part and for people with COPD. Others, such as breathlessness clinics, are less well recognised but have strong evidence to support their use. A better understanding of the ways that can be used to integrate breathlessness management systematically alongside disease management should drive further implementation research. Low-dose, steady-state oral morphine has a developing evidence base in support of a net benefit. However, not all people tolerate opioids and further research into alternative drug options is needed to help this distressing symptom.

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      Siân Williams, 30 Uplands Road, London, N8 9NL, UK. E-mail:

      The diagnosis and management of the symptom and underlying causes of chronic breathlessness challenge current health service organisation and delivery, as evidenced by late diagnosis or misdiagnosis, underuse of effective treatments and resource waste in times of health service austerity. A new approach that builds on the evidence and experience of managing complexity in healthcare is needed. This chapter summarises where we are now in terms of the scope and scale of the problem and offers some options to tackle it. It describes how to improve diagnosis and treatment in all settings by using a decision support tool derived from multidisciplinary case-based discussion and the literature on heart failure, COPD, asthma, obesity and anxiety interventions. It also describes how to set up specific cardiorespiratory services, and how to extend the learning from the best palliative care services for breathless patients. For the longer term, it offers the vision of a population-based approach, describing aims, objectives and criteria to evaluate the impact of a breathlessness system.

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      Talant M. Sooronbaev, Respiratory Medicine, Intensive Care and Sleep Medicine Department of NCCIM, 3 Togolok Moldo str, 720040, Bishkek, Kyrgyzstan. E-mail:

      Palliative care for respiratory diseases is a separate and serious problem for low-income countries. Many patients with advanced COPD and other chronic lung diseases who have reached the terminal stage often have disabling symptoms, such as breathlessness, cough, anxiety, depression, pain and fatigue. These patients need to be able to access health professionals with skills in palliative care in order to ensure optimal symptom control. In turn, these patients depend on the adoption of palliative care policies at local and national levels to ensure such access. These networks are, generally, far better developed in high-income countries than in low- and middle-income countries. That is why it is important to develop palliative care in low- and middle-income countries for patients with advanced, progressive respiratory diseases.

    1. Page 204
      Karen Margaret Detering, Advance Care Planning Dept, Austin Health, 145 Studley Road, Heidelberg, Victoria 3084, Australia. E-mail:

      COPD is a common, complex, progressive and incurable disease. Many patients with advanced disease experience debilitating physical, psychological and social impairments over relatively long periods of time. Currently, despite evidence showing that there is a wish and need for advance care planning (ACP), most patients with COPD do not have access to this. While prognosis for the COPD patient is difficult, mortality is high, and patient education regarding the implications of a COPD diagnosis is often lacking but wanted. Potential barriers to the discussion of prognosis include the uncertain illness trajectory in COPD and uncertainty among health professionals as to how to have these discussions. Health professionals need to be aware of the importance of holding these discussions in a timely fashion, and need to prioritise these discussions during routine care. In order to improve the quality of life and reduce the suffering of people with advanced COPD and their families, ACP and palliative care need to be incorporated as part of usual care and earlier into the trajectory of COPD.

    2. Page 221
      Jane L. Phillips, Centre for Cardiovascular and Chronic Care, Faculty of Health, University of Technology Sydney, P.O. Box 123, Ultimo, Sydney, NSW 2007, Australia. E-mail:

      Optimal EOL care addresses the physical, practical, psychosocial and spiritual needs of dying patients and their families. Effective EOL care can readily be provided by the patients' usual care team and delivered in the community, as an inpatient or in a nursing home setting. Initiating EOL care is dependent on clinicians' timely recognition that the patient is dying, and sensitively communicating this reality to the patient, their family and other members of the interdisciplinary care team. Recognition of dying focuses the goals of care on comfort and dignity in accordance with the patients and their families' wishes. It acknowledges the importance of assessing and managing the patient's symptoms, as well as their psychological, social and spiritual care needs.

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      Annalisa Carlucci, IRCCS Fondazione S. Maugeri, Via S. Maugeri 10, Pavia 27100, Italy. E-mail:

      This chapter will focus on reviewing the current literature on care of dying patients with end-stage respiratory disorders in the last days of their life. First, the focus will be on recognising, assessing and relieving the most typical late-stage symptom: breathlessness (dyspnoea). Secondly, specific challenges to face when looking after these patients will be discussed: assisted breathing, oxygen use, mechanical ventilation withdrawal, medications and the role of palliative care. Lastly, ancillary topics will be covered, such as ethics, spiritual needs, and patients’ and their families’ perspectives.