Chapter 3

Access to palliative care

Tim Peel¹, Lynn F. Reinke² and Claudia Bausewein³

¹Retired Consultant in Respiratory and Palliative Medicine, Northumbria Palliative Care Unit, North Tyneside General Hospital, Northumbria Healthcare NHS Foundation Trust, North Shields, UK. ²Health Services R&D, VA Puget Sound Health Care System, Seattle, WA, USA. ³Dept of Palliative Medicine, LMU Munich, Munich University Hospital, Munich, Germany.

Correspondence: Claudia Bausewein, LMU Munich, Dept of Palliative Medicine, Munich University Hospital, Marchioninistraße 15, 81377 Munich, Germany. E-mail: Claudia.bausewein@med.uni-muenchen.de

Palliative care services have been established widely around the world. Also, the need for palliative care involvement for people with advanced malignant and non-malignant disease has been recognised and supported by evidence. However, this does not necessarily mean that patients with advanced lung disease have sufficient access to palliative care in both generalist and specialist settings. Ways for respiratory medicine and specialist palliative care to cooperate need to be established because for many patients with chronic, non-malignant lung disease the respiratory physician will be the primary contact for a long time. Access to specialist palliative care should then be based on needs rather than diagnosis and prognosis.

Hospice and palliative care service models

Palliative care has developed around the world with various service models for both inpatient and community settings. In many countries, palliative care provision is differentiated between generalist/primary and specialist palliative care. Generalist or primary palliative care is seen as the task of healthcare providers, such as GPs, hospital doctors and nurses, and district nurses. It seeks to integrate palliative approaches within the regular care plan to address unmet needs in the advanced stages of illness [1]. Specialist palliative care services are those where the main activity is the provision of palliative care and clinicians have had additional training [2]. These services generally care for patients with complex and difficult clinical problems. Specialist palliative care therefore requires a high level of palliative care education, appropriate staff, and other resources and is provided by multiprofessional teams [3].

Differences in service models mainly relate to local structures and national healthcare systems with some components being similar and others being different although bearing the same name. This is particularly apparent in the USA where “hospice” tends to refer to EOL services, often community-based, and “palliative care” often refers to hospital-based advisory teams that may allow potentially more integrated care depending on local service funding models. An overview of specialist palliative care services as defined by the European Association for Palliative Care (EAPC) is provided in table 1. Some forms of specialist services, such as inpatient hospices or palliative care units, take over the care of the patients completely whereas other types of services provide specialist support to general services and aim to improve general palliative care in the setting where the patient is found [2]. This latter model reaches far more patients than specialist units can care for.

Palliative care is provided by a multiprofessional team of specially trained physicians, nurses, social workers, chaplains, and other specialists with advanced training in palliative care who work with each patient’s other clinicians to provide an extra layer of support [4]. Clinicians who are specifically trained in palliative care can provide in-depth pain and symptom management, communication regarding goals of care, and care coordination across settings and over time.

Hospice and palliative medicine is now recognised as a medical specialty in England, Ireland, Australia and New Zealand, and as subspecialty by the American Board of Medical Specialties (ABMS), as well as in many European countries (e.g. France, Germany, Norway) [5]. Many other European countries are also in the process of developing certification for palliative care [6]. Specialty and subspecialty palliative care services are mainly available in high-income countries; in low-income countries, the availability of subspecialty palliative care services is generally quite limited.

Healthcare specialties and professions

The importance of collaboration between palliative and respiratory medicine has been recognised in recent national and international guidance [7–10]. Patients with respiratory diseases will usually be under the care of the primary healthcare team after the diagnosis has been established in the respiratory clinic. As the complexity of their illness increases, it is likely that they will be referred to secondary care, usually to a respiratory physician. At this stage, management will focus on disease modification, aimed at reversing or at least halting the progression of the disease process. In patients with lung cancer, other clinicians such as surgeons and oncologists will also be involved.

Within each specialty there are different professionals who fulfil different roles in each patient’s care. For example, in COPD, apart from respiratory physicians, there are important roles for CNSs, physiotherapists, pharmacists, clinical psychologists, and dieticians.

The GP will usually know the patient and their family better than the secondary care professionals. From this point of view, the GP is in a good position for recognising the overall disease trajectory and advance care planning, and can help the patient make decisions about their future. A GP will not have as much in-depth knowledge about the specific disease processes as secondary care professionals, or about difficult symptom control, as specialist palliative care clinicians.

Respiratory physicians have expertise in the pathophysiology of lung diseases and in the treatments aimed at disease modification. Communication skills and general palliative care should be an integral part of respiratory medicine higher training, forming the basis for any management of respiratory patients. However, presently this is not generally the case.

Some respiratory physicians who wish to have more in-depth knowledge about palliative care take modules or diplomas in specialist palliative care during their training. This is more popular in some countries than others. Alternatively, a rotation to a palliative care service during respiratory medicine specialist training might provide a good insight and further expertise in palliative care. On a less formal level, training opportunities already exist within hospitals, and at regional, national and international levels at specialist society meetings.

Specialist palliative care physicians and CNSs are well trained in symptom control, communication skills, and ethical issues but have less experience of managing the reversible elements of respiratory diseases and of acute conditions that may occur during the course of a chronic illness.

In most respiratory diseases there will not be a precise point at which the management switches from treatment of the underlying condition to palliation of the symptoms. Rather, a palliative approach should be considered early in the disease in addition to disease modification. The American Thoracic Society (ATS) therefore suggests that when patients become symptomatic, palliative care should be made available at all times during the natural history of a progressive or CRD or critical illness [10]. Generally, palliative care should be made available when curative/restorative care begins and while it continues, after life-prolonging treatments are withheld or withdrawn, and, for the benefit of the patient’s family, after the patient has died [10].

Collaboration and innovation

As the specialist expertise from both respiratory medicine and palliative care is most beneficial for patients, collaboration between the two disciplines fosters optimal care. A number of different models for collaboration have evolved over recent years based on local structures, personal engagement, or research with evidence supporting the newly developed models. A few are introduced here.

Multidisciplinary team meetings and collaborative services

The concept of a multidisciplinary team for the management of most respiratory diseases is now well established, particularly for cancer and for some rarer diseases, where local expertise may be limited.

Multidisciplinary teams are well established in lung cancer care and usually include a specialist palliative care presence. Multidisciplinary teams can be used to access specialist palliative care [11]. Most general hospitals in the UK, but also in other countries, have a weekly lung cancer multidisciplinary team meeting. Apart from respiratory physicians and CNSs, team members include oncologists, thoracic surgeons, radiologists, pathologists, and usually specialist palliative care professionals (either consultants or CNSs).

In England, regional ILD multidisciplinary teams exist throughout the country [12]. They tend to concentrate on diagnostic issues and disease modification. Palliative patients are often not discussed. Once ILD patients have completed any disease-modifying treatment, they will be followed up in the respiratory clinic. If housebound and oxygen-dependent, they tend to return to the care of their primary healthcare team.

There are documented examples of specialist palliative care input into adult cystic fibrosis (CF) multidisciplinary teams with success [13], although the overall care will continue with the respiratory physician. In CF, specific challenges occur with the integration of palliative care with the high burden of daily symptoms in CF, especially pain and depression, on the one hand, and more invasive EOL care, partly because of changes in the demographics of death in CF and partly because of the wider pursuit of lung transplantation, on the other hand [14].

The integration of specialist palliative care with COPD remains challenging. The large number of patients and the unpredictability of the disease trajectory mean that COPD multidisciplinary teams have not become commonplace [15]. “Red flag” events, such as the need for NIV, might be used as triggers for consideration of future care needs (e.g. to introduce educational or self-management strategies) or finally involvement of palliative care and, if available, specialist palliative care. However, there are initiatives that integrate palliative principles into COPD care within the existing resources [16, 17].

Joint clinics

In lung cancer, parallel respiratory, oncology, and nurse-led clinics are commonplace with palliative medicine increasingly involved in the manner of an extended team rather than taking over care. Because of the high prevalence of symptoms in lung cancer patients, this may be an appropriate use of a scarce resource and clinical trials of early integration of palliative care in lung cancer have shown benefit [18]. This is not the case in general respiratory clinics [19].

There is no single model of care for the palliative needs of respiratory patients. Those providing their regular care need to be alert to when they need help from specialist palliative care. Those working in specialist palliative care need to be readily accessible to provide advice and education, but also to be directly involved in the care if necessary.

Breathlessness services

Over recent years, a number of breathlessness services have been developed; these are mainly based on research following the Medical Research Council Framework [20]. These short-term services focus on refractory breathlessness as the most dominant and disabling symptom of patients with respiratory disease, while also taking into account other symptoms and concerns about the life-limiting disease. Originally, nurse-led clinics were further developed into a multiprofessional Breathlessness Intervention Service with predominantly palliative medicine and physiotherapy input [21]. In another model, medical input was extended with close collaboration of respiratory and palliative medicine professionals seeing the patient jointly [22]. These services also play a major role in the early integration of palliative care into the disease trajectory of patients with advanced, non-malignant respiratory disease [22]. However, there is still little evidence to show which service model or delivery is needed for which patients. A recent RCT of people with lung cancer investigated whether a single breathlessness management session provided the same benefit as three sessions, with less breathlessness-related distress [23]. Researchers found no evidence that three sessions conferred additional benefits over one. Thus, a single session seemed appropriate, minimised patient burden, and was more cost-effective. It is important to monitor the benefit–harm balance of interventions even when the interventions do not involve a drug, device or surgical intervention. Breathlessness services are still relatively new to the respiratory community. Pulmonary rehabilitation is a much more familiar concept to respiratory physicians. However, patients with a more advanced disease might not be fit enough to attend several weeks of pulmonary rehabilitation but suffer increasingly from intractable breathlessness. This is the gap that breathlessness services intend to fill.

Integrated care models for patients with respiratory disease

With increasing numbers of patients suffering from respiratory disease, the need for integrated care models is constantly rising [24]. Also, care for patients with advanced lung disease has been criticised for being fragmented and often complex. Adding another element, such as specialist palliative care, can thus be a challenge [1]. Therefore, the ATS favours an individualised integrated model of palliative care in which a patient receives palliative care at the onset of symptoms from a progressive respiratory disease and then concurrently with curative/restorative care [10]. Thus, several care models have been developed around the world that integrate assessment, education, optimisation of management and self-management, and improved access to services.

The National Institute for Health and Care Excellence (NICE) has included palliative care in its COPD guidance and related pathway as an example for embedding access to palliative care into policy [25]. Breathing Space is a community service for people with COPD and other respiratory conditions and their carers provided by the Rotherham NHS Foundation Trust in the UK [26]. It provides inpatient care for people with exacerbations, pulmonary rehabilitation, oxygen services, education and lifestyle support, a residential 7-day programme targeting breathlessness, and respite and hospice care for those who need it. These services are all tailored to the needs of patients rather than the anticipated prognosis [26].

The Western Australian COPD model of care names care and EOL support explicitly as a Chronic Respiratory Disease Service Improvement Framework [8]. The BREATHE programme provides nursing, physiotherapy, occupational therapy, clinical psychology, pharmacy and community care aid services in a client’s home at a flexible level according to their level of fitness and complexity of healthcare needs [27]. The COPD-Home model is an integrated model for patients with severe and very severe COPD. It includes education for patients and involves nurses, improved coordination of levels of care with joint visits and telephone checks, improved accessibility through a call centre for GP support, and an individualised management plan [28]. INSPIRED (Implementing a Novel and Supportive Program of Individualized care for patients and families living with Respiratory Disease) is a home-based model to support COPD patients in Canada. It includes education according to patients’ and carers’ needs, a COPD Action Plan to help manage COPD and acute exacerbations, support with navigating the healthcare system and gaining access to programmes/services, and the opportunity to discuss advance care planning [1, 16].

Barriers to access

Trajectories

The disease trajectory of chronic lung diseases, such as COPD and pulmonary fibrosis, is variable and characterised by considerable uncertainty [15]. While patients typically have a phase of gradual decline, the trajectory can change abruptly because of exacerbations of the underlying lung disease or events caused by a comorbid disease.

Patients with advanced COPD usually experience a gradual but progressive decline in exercise tolerance and the development of oxygen dependence that is typically punctuated by acute exacerbations [29]. Patients with COPD are frequently hospitalised at the EOL, often in the ICU, although this will vary from country to country with patients being more frequently admitted to ICUs in the USA compared to Europe. However, there is some evidence that over time, fewer patients are dying in acute care hospitals. One retrospective cohort study examined fee-for-service Medicare beneficiaries who died in 2000, 2005 or 2008 with a diagnosis of cancer, COPD or dementia [30]. In the cohort with COPD, between 2000 and 2009, more patients died at home in 2009 than in 2000 (28 versus 24%), fewer died in acute care hospitals (32 versus 44%), and more patients were under hospice care at the time of their death (39 versus 20%).

Every COPD exacerbation can be life-threatening and is associated with an increased risk of dying. Approximately 10% of patients hospitalised with an acute exacerbation of COPD die during hospital admission [31]. This proportion increases to about a quarter for patients who need invasive mechanical ventilation because of respiratory failure [32]. About half of the patients admitted for an exacerbation do not survive 4 years after discharge [33].

Importantly, not all patients follow this hypothetical disease trajectory of a gradual decline interspersed with acute exacerbations. In fact, the progression of COPD is very heterogeneous [34], and the end of the patient’s life is often unanticipated by their loved ones [15]. Despite the heterogeneity in clinical course in patients with COPD, certain parameters predict a greater likelihood of death within 12 months: decrease in 6-min walk distance of 50 m; change towards a very sedentary lifestyle based on a single question; change towards feeling upset or downhearted; an increase in arterial carbon dioxide tension of <5 mmHg; or a decrease in arterial oxygen tension >3 mmHg [35].

IPF is usually characterised by a gradual and inexorable decline in respiratory capacity. However, patients may remain stable for a longer period of time or may be confronted with frequent hospital admissions because of acute worsening of respiratory symptoms [36]. The median survival for IPF is 2–3 years, although some patients live much longer [37]. Most patients experience a subacute worsening over one or more months, while a minority have an acute deterioration <1 month. The majority of patients with IPF die in a hospital setting, and in contrast to the data for COPD, there is no evidence that this number has declined over time or that hospice enrolment has increased [38]. In one study of adult patients with IPF living in the USA, only 14% were referred to palliative care and most referrals occurred in the last month of life [38].

The trajectory of lung cancer is more clearly defined than chronic lung diseases. For patients diagnosed with NSCLC, the greatest impact on prognosis is the tumour–node–metastasis staging. On average, median survival is 59 months for patients diagnosed with stage 1A disease and only 4 months for patients with stage IV disease [39].

The most important prognostic factor in patients with SCLC is the extent of disease (stage) at presentation. For patients with limited-stage disease, median survival ranges from 15 to 20 months, and the reported 5-year survival rate is 10–13%. In contrast, for patients with extended-stage disease, median survival is 8–13 months, and the 5-year survival rate is 1–2% [40].

These prognostic data support oncology guidelines recommending the integration of palliative into oncological care for patients with advanced metastatic lung cancer [41]. A clinical opinion from the American Society of Clinical Oncology (ASCO) advises combining standard oncological care and palliative care early on in the course of illness for all patients with metastatic cancer and/or a high symptom burden [42]. Despite these recommendations, few integrative practice models exist [18, 43, 44].

Attitudes towards palliative care

Despite the benefits, palliative care remains an unmet need for many patients with chronic lung disease. Barriers to accessing palliative care services include patients’ lack of understanding of the progressive nature of their disease and possibility they could die from COPD [45], and clinicians not broaching the topic, also in the belief that palliative care is only for dying people. Unfortunately, this misconception about palliative care as care for the dying is not only held by patients but also by professionals and the public, which makes it even more challenging to integrate palliative care earlier on in the disease trajectory.

Lack of communication

In a study of patients with oxygen-dependent COPD in the USA, only 32% of patients reported having discussed with their clinician the care they would want if they were too sick to speak for themselves [46]. A Dutch study confirmed that clinicians rarely discuss LST preferences with their patients with COPD, despite the fact that patients can indicate their preferences regarding LSTs [47]. In a cross-sectional study, outpatients were asked to complete a quality of communication questionnaire. Patients with severe COPD rated their clinicians’ general communication skills, such as listening and answering questions, highly. Conversely, patients rated their clinicians’ skills at discussing EOL topics as poor. In fact, topics such as prognosis, what dying might be like, and spiritual issues were not discussed at all [48]. These findings underscore the need for improving the communication skills of professionals caring for patients with advanced lung disease. Training in communication skills must be an integral part of any specialist training. Palliative care clinicians have the necessary communication skills and by working with other clinicians they can often support them in developing these skills. The World Health Organization lists COPD as one of the most common conditions for which palliative care is an appropriate, yet underutilised service [49].

Service configuration/delivery

Since the formal recognition of palliative care as a medical (sub)specialty nearly a decade ago in the USA and almost 30 years ago the in the UK, there has been an increase in the number of programmes throughout the USA and Europe [22, 50, 51].

The number of hospital-based palliative care programmes has increased rapidly and, as of 2013, programmes were in place at more than 67% of US hospitals with more than 50 beds [50]. The EAPC reported that the number of palliative care beds per million inhabitants ranged between 45 and 75 beds in most advanced European countries [52]. Studies have demonstrated significant cost reductions in care as a result of palliative care consults helping patient and families align their treatment preferences with the care they receive [53]. Concordance of patient goals and treatments results in less invasive care and a reduction in the length of stay [53, 54].

Models of hospital-based palliative care services include palliative care consultation services that provide recommendations to the requesting provider or service, palliative care units, and integrated palliative care models. Inpatient palliative care units and palliative care providers either have primary responsibility for patients or provide a consulting role. Inpatient palliative care units are most appropriate for patients with symptoms that cannot be easily controlled; when medical needs cannot be optimally managed in another setting; when distressed families need a higher level of support; when there is a need for transferring out of a critical care setting; and for patients who are close to dying. In one study, a dedicated palliative care unit reduced daily costs by 74% compared to usual care patients [55]. Integrated palliative care models that enhance palliative care within different settings are being developed; successful models include ICUs [56] and more recently EDs [57, 58]. ICU-based palliative care is growing because evidence shows that this model saves costs by appropriating care that aligns with patient and family members’ preferences [59, 60]. Palliative care in critical care settings can be delivered by intensivists, nurses, social workers, or palliative care specialists depending on the ICU model. Evidence suggests that the quality of palliative care in the ICU varies depending on factors such as staffing, stakeholder interaction, and eligibility ascertainment. The use of electronic health record triggers based on a combination of patient criteria (e.g. days on mechanical ventilation, poor outcomes and needs assessment) holds promise to improve the quality of palliative care [60].

Outpatient or community palliative care services provide continuity of care for patients who are discharged from the hospital or referred by a primary care or subspecialty provider. Community palliative care teams provide pain and symptom management, psychosocial support, and coordination of home care needs. Community-based programmes are less common than inpatient consultation programmes; however, a growing number of studies support the benefits of community-based and telemedicine palliative care services. These benefits include improved patient satisfaction, symptom control, quality of life, and reduced healthcare use [18, 61–63].

Barriers to palliative care referrals exist for patients, families, and providers [64, 65]. These barriers include the unawareness of palliative care services in patients and their families and the tendency of clinicians to equate palliative care with EOL care [66]. This misunderstanding calls for clear definitions in lay terms on the meaning of palliative care [4]. One study found the term “supportive care” more acceptable to patients and families [65]. Providers may be more amenable to consulting palliative care for supportive care or symptom management services. In addition to misperceptions of palliative care, issues related to reimbursement and the shortage of palliative care clinicians and services are very important and need to be addressed by policymakers, insurers, and medical and nursing school educational models.

Lack of training

For the large number of patients with an advanced and life-threatening illness to benefit from palliative care, it is important that supportive services be provided not only by specialists but also incorporated into the practices of all clinicians who are caring for persons with serious and complex illnesses such as chronic lung disease. Some term this primary palliative care, to distinguish it from subspecialty palliative care. This encompasses any type of supportive care that is delivered by all healthcare professionals caring for patients with a life-threatening illness. Optimal palliative care for patients with respiratory diseases should ideally incorporate both primary and subspecialty palliative care. However, clinicians caring for these patients need to attain competence in providing comprehensive supportive care. The lack of palliative care training is frequently cited by clinicians as the reason why they do not incorporate palliative care into their practice. Training all clinicians on the basic tenets of palliative care and on how to conduct goals of care conversations is becoming more available and is offered in various teaching formats, e.g. mobile apps, videos, case-based role playing, in addition to traditional classroom settings (table 2). Furthermore, this specialist training should be made systematic by incorporating it into all clinician training.

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