The editorial content below has been developed solely between Guidelines in Practice and the expert author.
Guest Editor—Dr Elizabeth Sapey
Honorary Respiratory Consultant, Queen Elizabeth Hospital, Birmingham
Senior Lecturer in Respiratory Medicine, University of Birmingham
’Only a minority of patients with moderate-to-severe COPD have discussed their treatment preferences and end-of-life care with their physician.’
Chronic obstructive pulmonary disease (COPD) is responsible for 30,000 deaths each year in the UK.1 For most patients, COPD is a progressive disease with worsening lung function and symptoms over time. Current therapies unfortunately do not halt the disease process, and there will come a time when the management of a patient should include palliative care and end-of-life decisions.
The goal of palliative care is to prevent and relieve distress and to support the best possible quality of life for patients and their families, regardless of the stage of disease or the need for other therapies.2 Many patients with COPD continue to experience distressing breathlessness, fatigue, and panic, anxiety, and depression, and palliative approaches to these symptoms have been shown to be effective in a number of clinical trials.3
End-of-life planning could include advanced care and directives, ceilings of care, and deciding where the person would wish to die.
The 2010 NICE guideline for COPD includes discussion of palliative care in patients with end-stage COPD and recommends that:1
- therapy with opioids, benzodiazepines, tricyclic antidepressants, major tranquilisers, and oxygen should be used when appropriate for breathlessness where other treatments have been ineffective
- patients, their family, and carers should have access to the full range of services offered by palliative care teams, including admission to hospices.
How well are we implementing guidelines
A landmark study published in 2001 compared patients with chronic lung disease and patients with lung cancer in the final 12 months of life.4 Among those who knew that they might die, patients with lung cancer were told about this earlier than patients with chronic lung disease.4 This study was published over 17 years ago, based on data drawn from the 1990 Regional Study of Care for the Dying, and yet recent research does not suggest there have been improvements in COPD palliative care.
A 2011 study of 105 patients with stable but very severe COPD showed that 61.9% had multiple symptoms, including:5
- muscle weakness
- low mood
However, for most symptoms, only a minority of patients received symptom-related treatment.5
A 2017 systematic review of 37 studies, which assessed discussions about end-of-life and palliative care between healthcare professionals and patients with COPD, described low frequency and poor quality of palliative care conversations. These often occurred at an advanced stage of illness, and in respiratory wards and intensive care units rather than in the community.6
The message is clear:3,5–7
- we are not discussing end-of-life care with patients with COPD at an early enough stage
- in some cases we are not discussing end-of-life care at all
- we are not managing the challenging symptoms associated with end of life effectively.
Why is this?
The importance of end-of-life conversations
Patients identified that communication is one of the most important skills of healthcare providers when discussing end-of-life care—and most patients favoured their own GP talking to them about the end of life.8,9
However, over 50% of studied GPs were unsure whether patients with COPD wanted end-of-life discussions and felt poorly equipped to have them.10 Some physicians avoided sharing information about end of life as they were concerned that it might increase symptoms of anxiety and depression in patients, but while suggesting it may be harmful for other patients, patients did not consider this type of information harmful for themselves, and believed information about end-of-life care should be offered routinely.
Both patients and physicians fear that a frank prognosis could worsen symptoms of anxiety and depression.6
Only a minority of patients with moderate-to-severe COPD have discussed their treatment preferences and end-of-life care with their physician. Despite 82% of GPs (in a survey of 214) agreeing that they should discuss the prognosis of COPD with patients, only 41% reported ‘often’ or ‘always’ actually having such a discussion.10,11 In another study, as many as 77% of all conversations about mechanical ventilation for end-stage COPD occurred when patients were already on a hospital ward or in an intensive care unit.12
Predicting end of life in COPD
Chronic obstructive pulmonary disease is a chronic disease associated with a slow but heterogeneous decline in lung function.13 This variability can make prognosis difficult. Review in primary care is recommended every year for patients with COPD, or twice a year for those with severe or very severe COPD.1 These reviews provide an opportunity for initiating end-of-life discussions.
Hospitalisation for COPD exacerbations is increasing with approximately 115,000 admissions per year in the UK.14 After experiencing one or two hospitalisations for an acute exacerbation of COPD, up to 40% of patients die within 5 years.15 A hospital admission might also prompt a review to consider strategies to reduce subsequent exacerbation risk and to consider whether discussions about end of life should start. Studies have also identified other disease factors which might help identify those at highest risk of death, as listed in Table 1.16–18 Other traits associated with poorer outcomes include the presence of cor pulmonale, the need for ventilation in the previous year, a raised carbon dioxide level, oxygen dependency, or weight loss.11
Table 1: COPD characteristics associated with increased mortality16–18
- Age ≥70 years
- Physical dependence (needs help with three activities of daily living)
- Poor quality of life
- Low BMI
- The presence of co-morbidities
- FEV1 ≤30%
- mMRC dyspnoea scale ≥3
- BODE ≥7
- BODEX ≥7
COPD=chronic obstructive pulmonary disease; BMI=body mass index; FEV1=forced expiratory volume in 1 second; mMRC=modified Medical Research Council; BODE=body mass index, obstruction, dyspnoea, and 6 minutes walking test; BODEX=body mass index, obstruction, dyspnoea, and severe exacerbations
None of these traits identify with certainty those patients who are most likely to die, but they do give an indication and can help focus efforts.16–19 However, studies have also demonstrated that end-of-life fears and anxiety about symptom burden near to death are prevalent across the COPD severity spectrum. Conversations that encourage discussion of these fears are valued by patients and can open a dialogue about end-of-life decisions.20
An issue that is echoed across most of the palliative care literature in COPD is the lack of understanding patients have about their own chronic disease. Patients with cancer often have discussions with their healthcare team about curative or palliative approaches. End-of-life planning and palliative care support is a standard of care in oncology clinics and in the community, which is thought to improve quality of life and care,21 but is not shared across many chronic illnesses, despite the prognosis of some chronic diseases being worse than most cancers.
In one study, patients with COPD expressed little understanding of their illness or how it might change over time and had received little education about their condition.22 Surprisingly, many patients do not understand that in most cases COPD is a progressive and potentially life-limiting condition.22 This lack of understanding about COPD is likely to make discussions about end of life more difficult. A literature review has shown that healthcare professionls are more likely to have end-of-life care discussions with patients with cancer than with patients with COPD.23
Conclusion: challenging conversations
Important messages regarding end-of-life care in patients with COPD:
- patients want to discuss their symptoms, end-of-life decisions, death, and dying, with a healthcare team that is familiar to them
- patients who take part in discussions rate their healthcare as better than those who do not24
- end-of-life conversations take place when patients are acutely unwell, and this reduces the quality of the conversations
- there are recognised traits that place patients at increased risk of death, which can help decide when to start the conversation
- to benefit from palliation and end-of-life care discussions, patients need to understand their disease and its progression.
Many of us will care for patients with COPD for a prolonged period of time. Published studies suggest that despite evidence of real benefit, the frequency and quality of palliative care conversations between patients and their healthcare team is poor. End-of-life planning and the palliation of symptoms can only occur if both the patient and the healthcare team feel ready and equipped to start a conversation which will include (at some point) discussions about death and the process of dying. These conversations are challenging, but published studies and personal experience tell of the importance of having them, and the positive impact they have on patient experience.
NICE. Chronic obstructive pulmonary disease in over 16s: diagnosis and management. Clinical Guideline 101. NICE, 2010. Available at: www.nice.org.uk/guidance/cg101/
American Academy of Hospice and Palliative Medicine, Center to Advance Palliative Care, Hospice and Palliative Nurses Association et al. National Consensus Project for Quality Palliative Care: Clinical practice guidelines for quality palliative care, executive summary. J Palliat Med 2004; 7 (5): 611–627.
Seamark D, Seamark C, Halpin D. Palliative care in chronic obstructive pulmonary disease: a review for clinicians. J R Soc Med 2007; 100 (5): 225–233.
Edmonds P, Karlsen S, Khan S, Addington-Hall J. A comparison of the palliative care needs of patients dying from chronic respiratory diseases and lung cancer. Palliat Med 2001; 15 (4): 287–295.
Janssen D, Spruit M, Uszko-Lencer N et al. Symptoms, comorbidities, and health care in advanced chronic obstructive pulmonary disease or chronic heart failure. J Palliat Med 2011; 14 (6): 735–743.
Tavares N, Jarrett N, Hunt K, Wilkinson T. Palliative and end-of-life care conversations in COPD: a systematic literature review. ERJ Open Res 2017; 3 (2): 00068-2016.
Halpin D. Palliative care for people with COPD: effective but underused. Eur Respir J 2018; 51 (2): 1702645.
Janssen D, Spruit M, Schols J, Wouters E. A call for high-quality advance care planning in outpatients with severe COPD or chronic heart failure. Chest 2011; 139 (5): 1081–1088.
Seamark D, Blake S, Seamark C et al. Is hospitalisation for COPD an opportunity for advance care planning? A qualitative study. Prim Care Respir J 2012; 21 (3): 261–266.
Elkington H, White P, Higgs R, Pettinari C. GPs’ views of discussions of prognosis in severe COPD. Fam Pract 2001; 18 (4): 440–444.
Curtis J. Palliative and end-of-life care for patients with severe COPD. Eur Respir J 2008; 32 (3): 796–803.
McNeely P, Hébert P, Dales R et al. Deciding about mechanical ventilation in end-stage chronic obstructive pulmonary disease: how respirologists perceive their role. Can Med Assoc J 1997; 156 (2): 177–183.
Agusti A, Calverley P, Celli B et al. Characterisation of COPD heterogeneity in the ECLIPSE cohort. Respir Res 2010; 11: 122.
NHS England. Overview of potential to reduce lives lost from chronic obstructive pulmonary disease (COPD). 2014. Available at: www.england.nhs.uk/wp-content/uploads/2014/02/rm-fs-6.pdf
Soler-Cataluña J, Martínez-García M, Román Sánchez P et al. Severe acute exacerbations and mortality in patients with chronic obstructive pulmonary disease. Thorax 2005; 60 (11): 925–931.
Guo Y, Zhang T, Wang Z et al. Body mass index and mortality in chronic obstructive pulmonary disease. A dose–response meta-analysis. Medicine (Baltimore) 2016; 95 (28): e4225.
Marin J, Alfageme I, Almagro P et al. Multicomponent indices to predict survival in COPD: the COCOMICS study. Eur Resp J 2013 42: 323–332.
Domingo-Salvany A, Lamarca R, Ferrer M et al. Health-related quality of life and mortality in male patients with chronic obstructive pulmonary disease. Am J Respir Crit Care Med 2002; 166 (5): 680–685.
Soriano J, Lamprecht B, Ramírez A et al. Mortality prediction in chronic obstructive pulmonary disease comparing the GOLD 2007 and 2011 staging systems: a pooled analysis of individual patient data. Lancet Respir Med 2015; 3 (6): 443–450.
Stenzel N, Vaske I, Kuhl K et al. Prediction of end-of-life fears in COPD - hoping for the best but preparing for the worst. Psychol Health 2015; 30 (1476-8321 (Electronic)): 1017–1034.
Hoerger M, Greer J, Jackson V et al. Defining the elements of early palliative care that are associated with patient-reported outcomes and the delivery of end-of-life care. J Clin Oncol 2018; 36 (11): 1096–1102.
Gauronskaite R, Zemnickiene S, Liustrickyte S et al. How COPD patients understand their disease and what are their future expectations? European Respiratory Journal 2016; 48: PA4342.
Momen N, Hadfield P, Kuhn I et al. Discussing an uncertain future: end-of-life care conversations in chronic obstructive pulmonary disease. A systematic literature review and narrative synthesis. Thorax 2012; 67 (9): 777–780.
Leung J, Udris E, Uman J, Au D. The effect of end-of-life discussions on perceived quality of care and health status among patients with COPD. Chest 2012; 142 (1): 128–133.
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COPD: End-of-life conversations and palliative care