Chapter 2

The need for palliative care

Sabrina Bajwah¹, Eve Namisango¹, Daisy J.A. Janssen^2,3, Deborah Dudgeon^4,5, Anna-Marie Stevens⁶ and Jayne Wood⁶

¹Dept of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, King’s College London, London, UK. ²Dept of Research and Education, CIRO, Horn, The Netherlands. ³Centre of Expertise for Palliative Care, Maastricht University Medical Centre+ (MUMC+), Maastricht, The Netherlands. ⁴Dept of Medicine, Queen’s University, Kingston, ON, Canada. ⁵Canadian Partnership Against Cancer, Person-Centred Perspective, Toronto, ON, Canada. ⁶Royal Marsden Hospital NHS Foundation Trust, London, UK.

Correspondence: S. Bajwah, Cicely Saunders Institute of Palliative Care and Rehabilitation, Bessemer Rd, London SE5 9PJ, UK. E-mail: sabrina.bajwah@kcl.ac.uk

Palliative care aims to prevent and relieve suffering by controlling symptoms and providing support to patients and families in order to maintain and improve their quality of life (QoL) [1]. COPD is the most common CRD that requires palliation, but other progressive respiratory diseases such as IPF are coming to the forefront, with recent studies showing the scale of suffering for both patients and carers [2, 3]. In delivering effective palliative care to large numbers of patients with respiratory disease, the epidemiology of advanced respiratory disease needs to be considered, including the challenges of delivering palliative care in a resource-challenged setting. In addition, there must be a focus on improving the physical, psychosocial and spiritual needs of those living with non-malignant lung diseases (including COPD and IPF), cancer and cystic fibrosis (CF). This chapter will highlight the palliative care needs of each of these individual disease groups.

Epidemiology of advanced respiratory diseases

Incidence and prevalence

23 million people in countries of the European Union suffer from moderate to very severe COPD, resulting in 1.1 million hospital admissions and 150 000 deaths a year [4]. The prevalence of COPD is estimated to range from 4% to up to 20% in adults over 40 years of age [5–8], with a considerable increase by age, particularly among smokers. Large differences exist among countries. These are attributable to differences in diagnostic methods, year of study, age of the population and prevalence of the main risk factors, such as tobacco smoking [9]. Limited data are available for resource-limited settings, but with a prevalence of 6.3%, a total of 56.6 million moderate to severe COPD cases is estimated in 12 countries in Asia [9]. COPD prevalence has always been higher in the older age groups in resource-limited settings but is now increasing in the 20–44 years age bracket due to the increase in tobacco consumption in this group [10].

Lung cancer is the most common cancer worldwide, with nearly 1.83 million new cases of lung cancer diagnosed in 2012 [11]. In Europe alone, more than 410 000 new cases of lung cancer were estimated to have been diagnosed in 2012 [11]. The UK incidence rate is the seventh lowest in Europe for males and the seventh highest for females [11].

The prevalence of IPF in the USA varies, with estimates of between 14 and 27.9 cases per 100 000 population using narrow case definitions, and between 42.7 and 63 per 100 000 population using broad case definitions [12]. In Europe, IPF prevalence ranges from 1.25 to 23.4 cases per 100 000 population [12]. The annual incidence of IPF in the USA is estimated at 6.8–8.8 per 100 000 population using narrow case definitions and at 16.3–17.4 per 100 000 population using broad case definitions [12]. In Europe, the annual incidence ranges between 0.22 and 7.4 per 100 000 population [12]. IPF prevalence and incidence increase with age, are higher among males and appear to have been on the increase in recent years [12].

Mortality

Respiratory diseases are among the leading causes of death worldwide (table 1) [13, 14]. Lung infections (mostly pneumonia and tuberculosis), lung cancer and COPD together accounted for 9.5 million deaths worldwide during 2008, one-sixth of the global total [13]. More than 3 million people died of COPD in 2012, which was equal to ∼6% of all deaths globally that year [13]. Over 90% of these COPD deaths occurred in low- and middle-income countries [15]. This trend is largely attributed to poverty-associated problems, which are associated with poor health outcomes [15]. In the 28 countries of the European Union, respiratory diseases account for one in eight deaths [15]. In the next two decades, the proportion of deaths caused by respiratory disease in Europe is likely to remain stable, with a decrease in deaths from lung infections balanced by a rise in lung cancer and COPD mortality [13].

Lung cancer is the most common cause of death from cancer worldwide, estimated to be responsible for nearly one in five (1.4 million) deaths [16]. Because of its high fatality (the overall ratio of mortality to incidence is 0.87) and the relative lack of variability in survival in different world regions, the geographical patterns in mortality closely follow those of incidence [16].

Morbidity

Globally, respiratory diseases present a serious public health problem and are associated with high morbidity, mortality, economic burden and impact on patient QoL, as well as that of their families. COPD is a major cause of chronic morbidity worldwide [17, 18]. COPD severely impacts QoL [19, 20]. Exacerbations lead to substantial reductions in health-related QoL (HRQoL), in both physical and other areas [21]. In the European Union, among respiratory diseases, COPD is the leading cause of work days lost [13]. In addition, recent qualitative research shows that other respiratory diseases such as IPF have a much greater impact than previously thought, with far-reaching implications of the disease on every aspect of patient and carers’ lives [2, 3].

The paucity of data on respiratory diseases in resource-limited settings is attributed to the limited diagnostic capacity, weak surveillance systems that do not include respiratory diseases in the national health management information systems for national level tracking, and a lack of vital statistics. However, it is likely that the burden of respiratory diseases is underreported.

The World Health Organization (WHO) estimated that respiratory diseases accounted for one-tenth of the DALYs lost worldwide in 2008 (table 2) [13, 14].

Health service burden

In 2013, there were approximately 6.5 million in-patients with diseases of the respiratory system discharged from hospitals in the European Union [22]. Almost half of respiratory admissions in Europe are attributable to acute infections (including pneumonia), and episodes of infection are often a cause of exacerbations of asthma and COPD. More than one-quarter of respiratory admissions are due to lung cancer and COPD, diseases that are strongly related to smoking [13]. Other respiratory diseases such as IPF also experience increased healthcare resource utilisation and direct medical costs [23]. This is important, because, as the population gets older, we can expect the burden on healthcare to increase [23].

Future projections

By 2030, the WHO estimates that the four major potentially fatal respiratory diseases (pneumonia, tuberculosis, lung cancer and COPD) will account for about one in five deaths worldwide, compared with one-sixth of all deaths globally in 2008. Within the WHO European Region, the proportion is expected to remain stable at about one-tenth of all deaths, with an increase in COPD and lung cancer deaths balancing a decline in deaths from lower respiratory infections and tuberculosis. IPF is predominately a disease of later life, with two-thirds of patients being over 60 years of age at presentation [24]. This demographic profile is important, as the incidence of IPF is set to double by 2030 as populations age [25]. Therefore, we can expect that the burden on healthcare will increase [23].

In developing countries, the WHO’s objectives for improving the management of respiratory diseases include decreasing the burden of illness, preventing avoidable deaths and increasing the QoL of patients [26]. The critical need for palliative care in respiratory diseases requires building capacity for healthcare professionals to provide palliative care to an array of patients with respiratory symptoms and increased access to appropriate medicines to improve care outcomes with only a modest investment of additional resources into the health system.

Palliative care needs in people with non-malignant lung disease

The probability of patients with COPD receiving palliative care is much lower than for patients with cancer. Moreover, if patients are referred to palliative care services, referral occurs late in the course of the disease (about 10 days before death). Patients with COPD who are not referred to palliative care are more likely to receive life-prolonging treatment than palliative treatment [27]. Patients with IPF are also unlikely to be referred to palliative care. A recent study showed that only 14% of deceased patients with IPF were referred for a palliative care consultation, and the majority of these were within 1 month of death [28]. Barriers to palliative care provision in patients with non-malignant lung disease include: 1) the variable disease trajectory, leading to difficulty in predicting prognosis and identifying patients appropriate for palliative care; 2) reluctance among clinicians and patients to discuss palliative care; and 3) health-system issues, including reimbursement structures [29].

Symptom distress

Symptom burden is high in patients with advanced chronic lung diseases [30, 31]. Dyspnoea is the most reported symptom [32, 33] and, according to bereaved relatives, 94% of patients with COPD suffered from dyspnoea in their last year of life [34]. Moreover, patients with a noncancer diagnosis experience more severe dyspnoea over a longer period of time than lung cancer patients [35]. Some patients even have dyspnoea at rest; it increases with exertion and can also increase during exacerbations of the disease [36]. Episodes of acute dyspnoea may occur several times a day and are described by patients as extremely frightening [37–39]. Patients also suffer from other symptoms; for example, fatigue, coughing, muscle weakness, sleeplessness, pain, and symptoms of anxiety and depression are frequently reported [31, 32, 40]. Symptoms are often poorly addressed; for example, in one study, only a minority of outpatients with advanced COPD reported receiving treatment for fatigue, muscle weakness, low mood or sleeplessness [30]. Moreover, if the patients received treatment for their symptoms, they were only moderately satisfied with its effect [30].

Impaired HRQoL

HRQoL is impaired in patients with advanced non-malignant lung disease. GORE et al. [41], in a study in 2000, showed that patients with advanced COPD had worse HRQoL than patients with advanced cancer. A more recent study in 2015 confirmed that these findings are still true [42]. Symptom distress correlates with impairment in HRQoL [31, 43]. In fact, patients with higher depression scores or an increase in dyspnoea severity are more likely to experience a decline in HRQoL [44].

Functional and social limitations

Living with advanced non-malignant lung disease has major consequences for patients, as well as for their loved ones. Patients experience symptoms such as dyspnoea during normal daily activities, and this naturally leads to the avoidance of exertion. However, this is a harmful response to dyspnoea and results in functional impairment. Functional impairment results in care dependency [45]. Care dependency is frequently reported by patients with advanced lung disease and is associated with impairment in HRQoL and increased mortality risk [43, 46]. Functional impairment and care dependency limit the ability to engage in social activities and therefore result in a change in social role [45]. Loved ones may also need to adapt their life and often change their role towards being a family caregiver [47]. The QoL and emotional well-being of family caregivers can be impaired [48]. In fact, family caregivers experience disruption of daily tasks and financial, family and health burdens [49]. Nevertheless, family caregivers also experience positive aspects of caregiving and may value their role as a caregiver [47].

Disease trajectory and advance care planning

Patients with non-malignant lung diseases often live for many years with their chronic disease, and loved ones often describe the end of their life as unanticipated [50]. The disease trajectories of non-malignant lung diseases are characterised by uncertainty, and progression of COPD or IPF is very heterogeneous [51–53]. Every exacerbation can be life threatening [54]. Indeed, mortality following a hospital admission due to an exacerbation of COPD is about 10% [54] and increases to about one-quarter for patients in need of invasive mechanical ventilation [55]. Moreover, patients with non-malignant lung disease may also die from other diseases. Patients often suffer from comorbidities, which also compromise survival as well as QoL [56–60].

The uncertain disease trajectory creates a challenge for clinicians. On the one hand, the likelihood of sudden deterioration and sudden death increases the need for timely advance care planning [61

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