Integrating palliative care for patients with chronic respiratory disease
Respiratory disease refers to a range of chronic, progressive, irreversible conditions including chronic obstructive pulmonary disease (COPD), progressive fibrotic interstitial lung diseases, bronchiectasis, cystic fibrosis and pulmonary arterial hypertension. These conditions result in respiratory-related symptoms such as breathlessness, but patients also experience other physical and psychological symptoms with functional, psychosocial and spiritual consequences. As respiratory disease progresses, these symptoms and consequences, acute complications, hospitalisations and palliative care needs increase. Management of advanced chronic respiratory disease may involve intensive therapies (eg tracheostomy, intubation, continuous positive airway pressure [CPAP], bilevel positive airway pressure [BPAP]), pleural or pericardial fluid drainage, lung volume-reduction surgery or transplantation, which may require rapid decision-making when used acutely. These factors highlight the importance of early integration of a needs-focused palliative approach to care alongside disease-orientated management—see the Respiratory guidelines for management advice of COPD, bronchiectasis and cystic fibrosis, and the Cardiovascular guidelines for management advice of pulmonary arterial hypertension. Palliative care may involve referral to a specialist palliative care service. Principles of palliative care for patients with chronic respiratory disease summarises the principles of palliative care for patients with chronic respiratory disease.
Collaborate with, and define the roles and responsibilities of, clinicians, services, families and carers. Consider whether or when to refer to a specialist palliative care service—see Who provides palliative care? [NB5] [NB6].
Educate the patient and their carer(s) about the prognosis, if appropriate—see Overview of communicating with and supporting patients with palliative care needs. The patient and their carer(s) may not recognise the severity of the disease because of stable symptoms and a history of improvement after exacerbations.
Discuss the patient’s preferences, values and goals of care initially and continue to review.
Support early and ongoing advance care planning, including discussion of resuscitation, hospitalisation and antibiotic therapy for infection (see also Pneumonia in palliative care).
Identify and support emotional and psychosocial needs.
Anticipate and plan for transitions across various settings, and acknowledge patient and family preferences—see Where is palliative care provided?.
Create and maintain an individualised disease management plan to address current health problems and those expected to arise:
- Manage symptoms and complications, including creating a symptom management plan.
- Plan an approach to modify or stop treatments as the illness progresses (see Decisions about withdrawing or withholding treatment), including drugs and airway or ventilatory support (if relevant).
Support the family and principal carer.
Support patients and their families and carers experiencing loss, grief and bereavement.
Prepare for the last days of life.
NB1: It is often appropriate to introduce palliative care from the time it is recognised that a patient has progressive, life-limiting illness; palliative care can be continued alongside disease-orientated management.
NB2: Aspects of palliative care may need to be introduced or revisited depending on patient and carer needs, and the clinical context. The approach and priorities of care often change with the phase of the illness.
NB3: Acute exacerbations of respiratory disease should prompt a review of care, including goals of care and advance care planning if appropriate.
NB4: Caring for patients with palliative care needs can be personally and professionally demanding—for further information and advice on building resilience and avoiding burnout, see Healthcare professional wellbeing in palliative care.
NB5: Specialist palliative care is increasingly integrated with ambulatory care respiratory clinics to optimise care.
NB6: Consideration of transplantation, regardless of eligibility, should integrate a palliative focus in care, including referral to specialist services, if available. Patients may have increased palliative care needs, deteriorate or die while waiting for a suitable donor.
It is often preferrable to introduce palliative care early in patients with chronic respiratory disease because this can:
- improve quality of life
- reduce symptom burden and hospital admissions
- increase advance care planning discussionsBroese, 2021Kreuter, 2017Murray, 2017.
For general benefits of introducing palliative care early, and considerations to inform the approach, see Introducing a patient to palliative care.
A needs-focused approach is required as prognostication of chronic respiratory disease is difficult. The disease trajectory can be unpredictable; it is often characterised by periods of apparent stability punctuated by acute episodes associated with significant risk of death—see Common illness trajectories for people approaching death for an example of a common illness trajectory.
Indicators of increasing palliative care needs and limited life expectancy in patients with chronic respiratory disease provides indicators of increasing palliative care needs and limited life expectancy in patients with chronic respiratory disease.
refractory symptoms despite optimal therapy
unplanned hospitalisation for respiratory disease or related diagnoses
oxygen dependence or other respiratory support requirements (eg NIV or high-flow devices)
breathlessness at rest or on minimal effort between exacerbations
respiratory failure or hypercapnia
weight loss, malnutrition or cachexia
functional decline
increasing dependence on others
advanced age
in patients with COPD, forced expiratory volume in 1 second (FEV1) less than 25% of predicted
in patients with cystic fibrosis, massive haemoptysis
COPD = chronic obstructive pulmonary disease; NIV = noninvasive ventilation
NB1: Also consider general factors when deciding if a patient requires palliative care; see Introducing a patient to palliative care.
NB2: The BODE index (calculated using body mass index [BMI], degree of airflow obstruction, dyspnoea and exercise capacity) can help predict survival of patients with advanced COPD over 1 to 3 years; see Celli BR, Cote CG, Marin JM, Casanova C, Montes de Oca M, Mendez RA, Pinto Plata V, Cabral HJ. The body-mass index, airflow obstruction, dyspnea, and exercise capacity index in chronic obstructive pulmonary disease. N Engl J Med. 2004 Mar 4;350(10):1005-12. doi: 10.1056/NEJMoa021322. PMID: 14999112. URL.