Key learning points
- COPD is a chronic disease that will require a palliative care approach to symptom control as the disease progresses – this should not be restricted to only end of life circumstances
- Primary healthcare teams are in a key position to deliver and coordinate palliative end of life care for patients with COPD but in some cases referral to specialist palliative care teams may be of benefit
- Honest discussion of prognosis and issues such as advance directives about patient’s wishes of future care are also part of the palliative care approach
- End of life care should also support spouses and families including psychosocial support and bereavement counselling after the patient’s death
Chronic obstructive pulmonary disease (COPD) is a common chronic disease which causes significant mortality and morbidity. In the earlier stages of the disease, management focuses on improving symptoms and exercise capacity and reducing exacerbations.1 As the disease progresses, a palliative care approach to symptom control becomes necessary, particularly during the final months of life when there is often a progressive decline in health status, worsening symptoms and increased reliance on family and carers to perform simple daily activities such as washing and dressing. Even when receiving optimal medical therapy many patients with COPD continue to experience distressing breathlessness and fatigue and often suffer from insomnia, panic, anxiety and depression.2 Palliative approaches to these symptoms are effective and their use should not be restricted to end of life situations.1,3
Patients with COPD appreciate continuity of care and reassurance provided by their primary healthcare team and these teams are in a key position to deliver and coordinate palliative and end of life care for patients with COPD.2–4 The ability to use palliative approaches should be part of the skill set of all clinicians managing people with COPD, but some patients will benefit from referral to specialist palliative care teams, whose multidisciplinary approach can improve a patient’s quality of life.5,6 Referral needs to be discussed sensitively with patients, with an emphasis on the positive aspects of specialist palliative care input, such as help with symptom control and family support.
Information about palliative care strategies in COPD is widely available and clinicians managing patients with advanced COPD should be aware of, and know when and how to employ effective palliative approaches to reduce symptoms.1,2,7,8 For example, breathlessness can be reduced using opiates, fans blowing air onto the face, and oxygen even if the patient is not hypoxemic.1,9 Clinicians should also be aware that other non-pharmacological approaches such as acupuncture and acupressure may also improve breathlessness and quality of life, and know that pharmacotherapy as well as cognitive behavioural therapy and mind-body interventions (e.g., mindfulness-based therapy, yoga, and relaxation) can be used to help anxiety and depression.10,11
Palliative care also involves honest discussion of prognosis and issues such as advance directives about the patient’s wishes regarding admission to hospital, ventilation and resuscitation in the event of cardiorespiratory arrest. Surprisingly, many patients do not understand that in most cases COPD is a progressive life limiting condition.12 Patients and families adapt to the subtle worsening of symptoms over months and years and are often unclear about their prognosis and likely illness trajectory, and unaware of the types of healthcare decisions they may face in the future.13,14 Although often uncomfortable for clinicians, open communication regarding death is important to alleviate patients’ fears and to allow them to make decisions regarding the management of their care at the end of life.
Clinicians should remember that end of life care must also support spouses and families. They frequently have to nurse patients at home and this can cause considerable strain.3 They need the psychosocial support that palliative care offers as well as bereavement counselling after the patient’s death.
Despite its benefits and inclusion in guidelines the majority of patients do not receive palliative care.1,15-18 For example, a study in the UK found that only 1 in 5 people dying with COPD in 2014 received palliative care services and COPD patients are more likely to die with aggressive medical intervention directed toward survival and less likely to receive palliative services than patients with lung cancer.19,20 All clinicians managing patients with COPD should be aware of the effectiveness of palliative approaches to symptom control and use them in their practice.
Professor David Halpin, consultant physician & honorary professor of respiratory medicine, University of Exeter, Exeter