Respiratory disease affects one in five people in the UK and is the third most common cause of death (Public Health England, 2015). Hospital admissions for respiratory-related diseases are rising at three times the rate of admissions for other conditions (British Lung Foundation, 2017). Some 56.4% of respiratory-related deaths in 2012 were the result of lung cancer or an acute pneumonic illness, while 32.1% of deaths resulted from chronic respiratory diseases, such as chronic obstructive pulmonary disease (COPD) (26.1%), idiopathic pulmonary fibrosis (IPF) (4.6%) and bronchiectasis (1.4%) (British Lung Foundation, 2019). Furthermore, the UK remains an outlier for respiratory-related age-standardised mortality rates compared with other European countries (Salciccioli et al, 2018).
In Wolverhampton in 2015, it was recognised that patients fulfilling COPD Gold Standard Framework (GSF) criteria were either not registered on the GP palliative care registers or had minimal interaction with or access to palliative care services. Thus, patients reaching the last stage of disease were not identified, and opportunities to provide preferential or optimal end-of-life care were lost. In response, chronic respiratory multidisciplinary team (CR-MDT) meetings and a combined respiratory-palliative clinic (CRPC) were established between Compton Care (a community palliative care service including community and hospice care) and the Royal Wolverhampton NHS Trust. This article describes the evolution of these services and their impact on patient journeys.
Background
Patients diagnosed with pulmonary-related cancers enter well-established care pathways (Lung Clinical Expert Group, 2017) to receive MDT support. Ultimately, and from clinical experience, as the patient journey progresses, they have quicker and easier access to a wider range of resources and support, with most patients likely to receive the required palliative care. This has been acknowledged in the NHS Long Term Plan (NHS England, 2019), with respiratory disease (particularly chronic disease) being one of the key priorities.
Chronic respiratory diseases are progressive and debilitating, and early mortality is common. Despite this, between 2001 and 2014, 67% of COPD- and 70% of interstitial lung disease (ILD)-related deaths occurred during a hospital admission. In comparison, only 19.9% and 19.1% of deaths occurred at home, and 0.9% and 2.9% of deaths occurred in a hospice for COPD and ILD, respectively (Higginson et al, 2017).
Gomes et al (2012) interviewed 1351 members of the UK general population asking: ‘In a situation of serious illness with less than 1 year to live, where do you think you would prefer to die if circumstances allowed you to choose?’ Some 64.1% expressed a wish to die in their own home or the home of a relative or friend, 29% in a palliative care unit, 2% in a care home and only 3.2% in a hospital. Thus, a disparity exists between the wishes of individuals and the end-of-life care they may receive.
In 2015, 5008 patients diagnosed with COPD were listed on the Quality and Outcomes Framework (QoF) primary care registers in Wolverhampton. COPD patients meeting the GSF prognostic indicator guidance (GSF-PIG) (Thomas et al, 2016) were compared with those included on the palliative care register. Some 1232 patients (24.6%) met ≥1 GSF-PIG criteria, with the commonest criterion being a score of ≥4 on the Medical Research Council (MRC) Dyspnoea scale (n= 2925, 58.4%). The MRC score (Fletcher, 1960) is a tool to measure perceived disability due to breathlessness, and identifies patients at the severe end of the disease spectrum, who are more likely to be limited by this symptom. The GSF-PIG suggests that patients diagnosed with COPD and who meet ≥2 COPD GSF-PIG criteria should be considered for inclusion on the palliative care register. Only 39 of the 254 (15.4%) patients with ≥2 GSF-PIG criteria were included on the register, indicating that a significant proportion of patients were not benefiting from the primary care palliative MDT meetings. This prompted a review of clinical services.
Chronic respiratory disease multidisciplinary team
The CR-MDT was established to co-ordinate the care of patients with chronic respiratory diseases. The health professionals involved included hospital specialist and community nurses, a respiratory consultant, palliative care consultants and nurses and respiratory physiotherapists. The MDT meets fortnightly to discuss patients whom team members identify from community services or who are referred from secondary care services (usually respiratory). During the CR-MDT meeting, patients who may benefit from treatment at a combined respiratory-palliative clinic (CRPC) are prioritised based on clinical need (although they are usually seen in the next clinic).
The MDT approach has enhanced professional relationships and communication between different community and hospital services. Since MDT participation was incorporated into existing job plans, no business case was required.
The combined respiratory-palliative clinic Impact of the CRPC
The CRPC runs monthly at a Compton Care hospice (although patients are occasionally reviewed at home or in hospital). Referrals are only accepted from secondary care, ensuring that medical management is maximised, and conversations about palliative and end-of-life (EoL) care are initiated. This is especially important to prepare the patient and their relatives for the location and focus of their appointment (i.e. no surprising conversations). These initial secondary care conversations provide useful insights into the challenges and issues that the patient and/or their relatives may be experiencing (e.g. in accepting the prognosis).
The agreed aim of the CRPC is to provide co-ordinated palliative and respiratory care to patients with chronic respiratory disease. Its objectives are to:
The patient is encouraged to attend the appointment accompanied by a relative or friend, so both get the necessary support and have opportunities to share their concerns and difficulties. Similarly, attendance of community nurses ensures continuity of care, with information on symptoms and psychological challenges shared. This enables continuation of discussions in the community. In the event that a patient attends the CRPC alone, their community nurse supports them (based on the relationship they have built in the community). Clinic observers (doctors, nurses, physiotherapists and students) may be present for educational purposes.
Four patients are reviewed in each clinic, with hour-long appointments. The respiratory and palliative care teams consult together, ensuring that all symptoms are addressed simultaneously. This prevents patients from repeating conversations and improves symptom management. The respiratory and palliative teams' skills complement one another, enabling them to share education and experience.
A holistic approach is applied to understand and address patients' physical, psychological and social needs. Individualisation of care is possible by varying the consult focus depending on the needs of the patient and those accompanying them. The clinic often connects patients to other teams or resources (e.g. physiotherapy, social workers, support groups), and discussions may be held regarding advance care planning, including Do Not Attempt Resuscitation (DNAR) decisions, hospital avoidance plans and preferred place of death.
Impact of the CRPC
Since the CRPC was established in June 2015, 106 patients with a mean age of 71 years have been invited to at least one appointment (50.9% are men). Some 97.2% (n=103) of these patients were invited to an outpatient appointment at Compton Care (hospice). Around 23.6% (n=25) did not attend their clinical appointment, most commonly because they felt too unwell on the day.
Some 56.6% (n=60) of patients offered an appointment have died; 48.3% (n=29) died in a community setting (own or a relatives' home, hospice or care home), while 41.7% (n=25) died during hospitalisation. The mean number of days between the appointment and death was 424 days. There was no significant difference (independent t-test, p=0.13) in the mean number of days between appointment and death in patients who attended the combined clinic.
More patients diagnosed with COPD were seen in the CRPC compared with those having other chronic respiratory diseases (Table 1). Patients diagnosed with IPF, any ILD or combined pulmonary fibrosis and emphysema (CPFE) received appointments significantly closer to their day of death than those with COPD (independent t-test: p<0.0001, p<0.01 and p<0.01, respectively). The number of inpatient hospital deaths for COPD and IPF were noticeably lower than the 67% and 70%, respectively, quoted in previous literature (Higginson et al, 2017). Data on place of death prior to establishing the CRPC were not available for comparison.
| COPD | IPF | Any ILD | CPFE | Bronchiectasis | |
|---|---|---|---|---|---|
| No of patients (% of total patients referred) | 75 (70.8%) | 18(17%) | 22 (20.8%) | 5 (4.7%) | 4 (3.8%) |
| Mean age in years (range) | 70(51–87) | 75 (49–93) | 73 (49–93) | 75 (65–75) | 72 (66–85) |
| No of patients who have died (% of patients referred with each disease) | 43 (57.3%) | 11 (61.1%) | 13(59.1%) | 4(80%) | 0(0%) |
| Mean days from appointment to death | 630 | 297 | 390 | 256 | NA |
| No of patients who died in the community (%) | 18 (41.9%) | 8 (72.7%) | 8 (61.5%) | 2 (50%) | NA |
| No of patients who died during hospitalisation (%) | 22 (51.2%) | 3 (27.3%) | 3 (23.1%) | 0 | NA |
| No of patients receiving oxygen therapy at appointment (%) | 33 (44%) | 11 (61.1%) | 12 (54.6%) | 2 (40%) | 0 |
| No of domiciliary NIV at appointment (%) | 5 (6.7%) | 0 | 0 | 1 (20%) | 0 |
| No of patients who previously received NIV (%) | 28 (37.3%) | 0 | 0 | 1 (20%) | 0 |
COPD=chronic obstructive pulmonary disease; IPF=idiopathic pulmonary fibrosis; ILD=interstitial lung disease; CPFE=combined pulmonary fibrosis and emphysema; NIV=noninvasive ventilation
Since 2017, 36 patients have completed the Integrated Palliative Care Outcome Scale (IPOS) (Palliative Care Outcome Scale, 2014) before and after their clinic appointment (Figures 1–3). The IPOS is a widely validated resource (Hearn and Higginson, 1999) used in advanced disease (both cancer and non-cancer disease) to identify different symptoms and challenges that a patient and their family may be experiencing. The scale can be applied to assess changes over time, with patients completing Likert scales for different categories (0–4). A trend of improvement was noted for most categories, with significant improvements (paired t-test) seen in ‘feelings of anxiety or worry about their illness or treatment’ (p<0.005) and ‘feeling at peace’ (p<0.05).
Feedback for the CRPC
Feedback is continuously collected from patients, their relatives and health professionals attending the CRPC in order to develop the service further.
Patients
Since 2017, 36 patients have responded to open-ended questions about the CRPC (Figure 4). Overall, patients felt this was a positive experience, and they appreciated the presence of multiple doctors in the same room, accompanied by their community matron. One patient commented:
‘Having the matron with us on my visit made me feel very comfortable.’
Patients felt that their concerns were listened to and addressed, and they liked the tone and atmosphere of the CRPC. They felt better educated and understood their disease and symptoms:
‘I was nervous attending on the day, but that soon disappeared when I met the doctors. I feel that my condition and my mental state will be assisted by the support and medication they were able to give me.’
Relatives
Relatives accompanying patients at the clinic (n=28) also responded to open-ended questions as feedback on their experience (Figure 5). These tended to correlate with themes arising from patient feedback regarding the experience, CRPC structure and the information provided. Positive comments included:
‘It was very helpful being given information on the respiratory causes and problems and why they occur and then on how to manage the condition with palliative care. This was preferable to having two separate appointments.’ ‘I am so glad we attended this clinic. I have peace of mind that my mother now can get all the help she needs. Thank you.’ ‘I found the clinic informative and very helpful. The staff were excellent. There was a very relaxed atmosphere where my partner and I felt able to receive better information and ask questions.’
Community nurses and matrons
Community nurses and matrons form a vital link between the patient and primary and secondary care. They develop unique relationships with patients and their relatives, often initiating conversations that can be continued in the CRPC. Their role during the clinic appointment varies depending on the patient, but their attendance is crucial in providing continuity of care after the CRPC. A community matron provided this insight on the CRPC:
‘I feel that the joint respiratory-palliative clinic is a unique opportunity for both patients and staff. From the patient's perspective, it means they have an extended appointment to discuss ongoing concerns regarding their illness, and due to the lack of time restraints, there is time for families and carers to be involved in the discussion. It also helps being held at Compton Care, so that the patient has seen the hospice, meaning the future prospect of going again, as an inpatient or for day care is less daunting. As a matron, I feel that it gives us an opportunity to discuss any concerns with the patient's current medications, anticipate any problems and provide us with a plan of care. Sometimes, patients are reluctant to consider the hospice as an option for day care or inpatient stay, and our presence helps, as it is someone who they know with them, helping to relieve anxiety.’
Respiratory and palliative consultant feedback
Respiratory and palliative care specialists value the CRPC, with observed improvements in shared practice and patient experience and consistent and clear messages provided to patients. One consultant commented on their experience:
‘I really enjoy the joint clinic. As consultants in different specialties, we have learnt a great amount from each other, which has improved both our individual and teams’ practice. It's a great way of introducing patients to specialist palliative care services and a good use of resources to have them seen by both teams at once.’
Observers
The CRPC provides a unique opportunity for doctors and other health professionals to gain experience in managing chronic end-stage respiratory disease. It has educational value, providing advice and teaching on symptom management, social support and advanced communication skills. Registrars who have attended the CRPC commented:
‘The combined respiratory-palliative clinic provided great insight into the physical, psychological and social impact that chronic respiratory diseases like COPD and IPF have on a patient and their carer(s). I learnt useful evidence-based strategies to manage symptoms and have applied these to my own practice.’ ‘People often forget about those with chronic diseases, despite literature stating that their symptom burden is greater than those with cancer. The CRPC delivers care to those who have complex symptoms, and hospice, hospital and community colleagues deliver truly patient-centred care.’
Discussion
At present, most patients discussed at the CR-MDT and seen in the CRPC have a diagnosis of COPD. While the service was established based on the Wolverhampton COPD population, it has become increasingly recognised that patients with other chronic respiratory illnesses, such as IPF, require this service as well. Therefore, the scope of the service has been expanded. Patients with ILD, especially IPF, are seen in clinic significantly closer to death than those with COPD are, demonstrating that chronic respiratory diseases can follow differing trajectories, making prognosis difficult to determine. Furthermore, the clinic's experience highlights that work is still required in earlier identification of patients who are at risk of death from their chronic illness in the subsequent 12 months, so that appropriate palliative services can be provided.
A strength of the CRPC is its holistic approach, which is reflected in the feedback from various stakeholders. While trends of improvement in symptoms were seen in nearly all categories, a significant impact was demonstrated in those centred on emotional and psychological support. This is likely the result of the clinic's focus on emotional and psychological wellbeing and subsequent referrals to other services (clinical psychology, physiotherapists specialising in breathlessness, hospice daycare and support groups). The other trends observed are probably not significant because of the relatively small numbers of patients who have attended the clinic to date.
The CR-MDT and CRPC structure is critical to its success, with the MDT approach facilitating representation from community, primary and secondary care. This helps align care, ensures that consistent information is provided to the patient and, ultimately, achieves smoother transitions of care between services. Similarly, from inter-professional and inter-specialty working, knowledge and skills are shared, improving overall care standards.
The presence of community nurses throughout this process ensures greater continuity of care between primary and secondary care services; they attend patients at home and when admitted acutely to hospital and liaise with GPs and hospital services alike to clarify and ensure consistent management plans and strategies.
The impact of the CRPC and the integration of respiratory, palliative and community services can also be seen on reviewing the place of patient death. Among patients who attend the CRPC, a smaller proportion diagnosed with COPD and IPF die as inpatients in an acute hospital, compared with figures quoted in the literature (Higginson et al, 2017). Although encouraging, this trend should be interpreted with slight caution, given the relatively small numbers who have attended the CRPC to date and the lack of data available for place of death before the setup of the CRPC as well as overall locations of death for different respiratory disease groups locally. However, this is something that will be continuously monitored as the service develops and expands.
It has been recognised that further work is required in both identifying patients who may be entering the end stage of their disease and initiating the appropriate referrals. Furthermore, reviewing the symptoms, challenges and difficulties that different chronic respiratory disease cohorts face will be important in planning services and meeting the needs of patients. Given that a reasonable proportion of patients did not attend their initial appointment, it may be that expansion of the service with time could lead to more patients being reviewed in a non-clinical environment. However, a balance is required to ensure that patients are reviewed in a timely manner (at present, an appointment is offered the subsequent month from referral) and adaptability of the service to individual patient needs.
Hosting the clinic at the hospice helps to break traditional stigma attached to hospice settings. Patients and their relatives may subsequently consider the hospice for daycare, support groups, respite care or as a preferred place to die, where, previously, they would have not entertained this idea.
Conclusion
A combined MDT approach to chronic respiratory disease is required when patients are approaching the end stage of their disease. By integrating respiratory and palliative care and community services, holistic care can be provided effectively and efficiently. This approach enables a greater proportion of patients to live and die in their preferred place while improving their physical, emotional and social wellbeing. Focus is required on improving access for all chronic respiratory diseases and understanding the different symptoms and challenges that each cohort may face.