In East London, joint working between respiratory and palliative care teams ensures patients with severe COPD have access to end-of-life care.
Identifying patients with chronic obstructive pulmonary disease who need specialist palliative care is a challenge because of the unpredictable nature of the disease. This article outlines how respiratory and palliative care teams in an acute trust worked together with community respiratory nurses to help patients with COPD approaching the end of life and their carers to access specialist palliative care services, benefit from advance care planning and avoid hospital admissions.
Citation: Mulligan J, Heeks A (2017) Providing timely end-of-life care to patients who have COPD. Nursing Times; 113: 1, 45-47.
Authors: Judy Mulligan is a respiratory nurse specialist at Barts Health NHS Trust; Anne Heeks was a lead nurse for COPD at North East London Foundation Trust.
- This article has been double-blind peer reviewed
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The palliative care needs of people living and dying with chronic obstructive pulmonary disease remain largely unmet. To address this, in 2010 we created an integrated COPD–palliative care multidisciplinary care model in East London. In our experience, integrating respiratory and specialist palliative care services can be done relatively easily and cost-effectively, provided there is plenty of enthusiasm and the workings of a good partnership.
COPD and end-of-life care
People are living longer and dying at an older age from chronic, progressive diseases such as COPD. In England, COPD is the fifth leading cause of mortality among all causes of death, with 23,000 deaths a year in England (Department of Health, 2011). It is the second most common reason for emergency admissions to hospitals; 15% of those admitted die within three months of admission and around 25% die within a year (DH, 2011).
The quality of life of patients is at least as poor, and maybe worse, than that of lung cancer patients. According to Solano et al (2006), breathlessness, fatigue and anxiety occur more commonly in COPD than in advanced cancer, heart disease or renal disease. Still, people with cancer are more likely to receive timely referrals to specialist palliative care. In 2013/14, only 13% of people accessing inpatient palliative care services in England, Wales and Northern Ireland had a non-cancer diagnosis (National Council for Palliative Care, 2014).
Many barriers hinder the provision of good end-of-life care in COPD, some of which are listed in Box 1. There is some evidence that advance care planning (ACP) increases the satisfaction and sense of control of patients, and reduces their fears, anxieties and emotional distress (Spathis and Booth, 2008). This is an area where specialist palliative care nurses can play a direct and valuable role.
Different life-limiting illnesses follow different progressions: in cancer, a sudden onset of disability often marks the beginning of the terminal phase; in COPD, which is a progressive disease, it is often difficult to pinpoint when people enter the dying phase. This creates uncertainty regarding the prognosis and a potential conflict between treatment aims, with both active treatment and palliative care interventions co-existing.
How can good end-of-life care be provided when it is not clear that the end of life is approaching? To help identify adult patients nearing the end of life as early as possible, the team behind the Gold Standards Framework (GSF) has been producing prognostic indicator guidance since 2006. The fourth edition (GSF, 2011) offers practical guidance for a variety of settings and proposes three types of indicators:
- The surprise question: would you be surprised if this patient was to die in the next six to 12 months?
- General indicators of decline: deterioration, increasing need, patient’s choice of no further active care;
- Specific clinical indicators related to certain conditions, COPD being one of several conditions grouped under ‘organ failure’ and characterised by ‘erratic decline’.
Spathis and Booth (2008) contend that ACP cannot take place unless it has been acknowledged that COPD is a progressive and irreversible disease with a limited prognosis. If patients are to express their end-of-life care wishes, and eventually be cared for and die in their preferred place, then the possibility of death and dying must be identified, accepted and discussed well ahead of time.
Integrating palliative care
The degree of integration between mainstream healthcare services and specialist palliative care varies across the country. The End of Life Care Strategy (DH, 2008) identified COPD as one of the conditions for which further evidence is needed as to how ACP can be achieved in practice.
Although there is a lack of evidence on which models of care work best, Gardiner et al (2012) have identified several factors that foster a good working relationship between the generalists who care for most people at the end of life, such as GPs or district nurses, and specialist palliative care services:
- Good communication between care providers;
- Well defined rules and responsibilities;
- Opportunities for shared learning
- Appropriate and timely access to specialist palliative care services;
- Care coordination.
Developing our integrated model
A community-based ‘early discharge’ service for COPD patients cared for by the community respiratory team was put in place in 2009. It quickly became clear that those with very severe COPD did not fit into this ‘early discharge’ model. A profile emerged of patients at high risk of dying within a year: these patients had complex needs, uncontrolled symptoms and poor quality of life; they experienced frequent emergency admissions to hospital; and they had to cope with the possibility of imminent death with little opportunity to discuss end-of-life care or participate in decisions. In order to accommodate these patients, the model was changed from an ’early discharge’ to a ’supported discharge’ model.
The first step to developing supported discharge was to set up, in 2009, a steering group at the Margaret Centre (an NHS specialist palliative care unit run by Barts Health Trust) to drive service improvements. A COPD–palliative care multidisciplinary team (MDT) was then established in 2010.
How patients are selected
As there are no nationally agreed criteria for access to specialist palliative care, we have developed our own criteria to help us identify patients nearing the end of their lives and trigger their referral to specialist palliative care. These criteria, listed in Box 2, were established using the GSF prognostic indicator guidance (GSF, 2011) and expert opinion from the MDT. They feature as an easy-to-complete tick box list on the referral form. A negative answer to the surprise question about whether the patient is likely to die in the next six to 12 months prompts further questions such as ‘Is the patient likely to be aware of this?’ and ‘Who would be best placed to initiate discussions on the end of life?’.
We have also mapped patients’ journey locally across primary and secondary care, so that we can get the right patients in the right service at the right time. This is either the supported discharge team or the respiratory service with input from specialist palliative care.
How the MDT works
The MDT members include a specialist palliative care consultant, a palliative care nurse specialist, an occupational therapist, a social worker, a complementary therapist, a counsellor, community and hospital-based respiratory nurse specialists, and community matrons. The MDT meets monthly for an hour and discusses four patients on average at each meeting. Patients can be referred to the MDT by any team member of any care team involved, whether hospital- or community-based.
The outcomes of the MDT discussions are shared with GPs through community GSF meetings, which are attended by the palliative care nurse specialists. This directly influences patient management and empowers individual MDT members to act on the team’s recommendations. They also conduct joint visits in the community.
What have we achieved?
This model of integrated working between respiratory and specialist palliative care professionals has helped us remove barriers to good end-of-life care in COPD. The referral criteria help us deal with the unpredictability of disease trajectory and prognostication (that is, predicting prognosis) difficulties, by allowing us to differentiate between patients with multiple admissions who are probably not at the end of life, and patients who are likely near the end of life and thus appropriate for referral to specialist palliative care. This results in better needs assessment, better care planning and better service provision. ACP can be started at the appropriate time by healthcare professionals with the right skills. This has had a positive impact on the care, as shown by positive feedback from patients and carers.
The joint working also provides valuable training opportunities, as it results in significant up-skilling and improved confidence of MDT members; specialist palliative care nurses gain a greater understanding of COPD, while community respiratory nurses acquire knowledge that enables them to recommend symptom control measures and start discussions around ACP and end-of-life care.
In 2011, our COPD–palliative care multidisciplinary care model was adapted for patients with heart failure – another progressive condition characterised by ‘erratic decline’ (GSF, 2011).
The case study in Box 3 is an example of joint management for a patient who had unresolved physical, social and psychological needs, including complex symptoms, a difficult family situation and ethical issues regarding treatment decisions.
The early integration of palliative care in the disease trajectory of COPD patients has been advocated for a long time as a solution to meet patients’ needs, reduce hospital admissions and also reduce overall healthcare costs. Our model of integrated working was relatively easy and cheap to implement, and showed that specialist palliative care provision can deliver both improved outcomes and better experiences for patients and families.
Box 1. Barriers to good end-of-life care in COPD
- Unpredictable disease trajectory
- Significant prognostication difficulties
- Lack of advance care planning
- Health professionals’ misconceptions about COPD and end-of-life care
- Lack of research evidence
Box 2. Referral criteria for specialist palliative care
The patient must meet all four following criteria:
- Physician-made diagnosis of COPD
- Minimum 20 pack-year smoking history (unless alpha 1 anti-trypsin deficiency)
- FEV1 less than 30% predicted (or patient too ill to perform spirometry)
- Patient agrees to referral
The patient must also meet either two major, or four minor, or one major plus three minor of the following criteria:
- >3 admissions in one year
- One admission with type-II respiratory failure in one year
- Fulfils long-term oxygen therapy criteria/has cor pulmonale
- Four exacerbations in one year
- Domiciliary ventilator support
- Patient-initiated discussion
- Anorexia with documented weight loss
- Grade 4/5 on the Medical Research Council dyspnoea scale
- Living alone
Box 3. Case study: David Jones and his wife*
David Jones was 72 years old when he died from severe COPD. In the two years before his referral to the COPD–palliative care MDT, Mr Jones frequently attended A&E and was regularly admitted to hospital for exacerbations. During one admission to a general medical ward, he was referred to the ‘supported discharge’ community team. He agreed to be assessed and reviewed at home – where he lived with his wife Beth as his sole carer – the day after discharge.
During that first home visit, Mr Jones made it clear that he did not want to be admitted to hospital again, nor did he want to be resuscitated. His wife found this extremely upsetting and said she felt unable to cope. Mr Jones’ disease was debilitating for both of them, and the only time she got a break from caring for her husband was when he was admitted to hospital.
On assessment, Mr Jones was found to have a chronic productive cough, breathlessness, fatigue and pain. His scores for anxiety and depression were high. Furthermore, he had financial concerns that were worrying both him and his wife. The lead community respiratory nurse referred Mr Jones to the COPD–palliative care MDT for symptom control and ACP. Within two weeks, he was seen as an outpatient by the palliative care consultant, who prescribed antidepressants and anti-anxiety medication.
Mr Jones and his wife were also put in touch with the Margaret Centre so that they could access all the specialist palliative care services available. They started attending a weekly support group, and appreciated not only having a cup of tea and chatting with other patients and carers, but also the breathing and relaxation exercises. Both accessed various complementary therapies and enjoyed these sessions.
The palliative care social worker arranged support regarding benefits and continuing care funding for home care. The palliative care occupational therapist reassessed the couple’s home and adapted it to make life at home more manageable. Mr Jones was entitled to four weeks of specialist palliative respite care per year, which meant his wife could plan holidays to visit family. With support from the Margaret Centre, Mr Jones formalised his preferences for care, expressing the wish to die either at home or at the centre.
Once Mr Jones had been referred to the COPD–palliative care MDT, he did not need to be admitted to the acute hospital again. The community respiratory service maintained contact via home visits and telephone calls for 10 months. During a planned respite admission to the Margaret Centre, he suddenly deteriorated and died peacefully a few days later with his wife at his side, in an environment that was familiar to both of them. After her husband had died, Mrs Jones was visited at home by the community respiratory team and was offered bereavement counselling.
* Mr and Mrs Jones are a fictitious couple whose story is typical of patients with COPD cared for at the Margaret Centre
- People with chronic obstructive pulmonary disease often have unmet palliative care needs
- Patients need timely referral and access to specialist palliative care services
- Health professionals need clear criteria to detect patients approaching the end of life
- Joint working between respiratory and specialist palliative care services can improve outcomes for patients and their families/carers
- Collaboration between respiratory and palliative care teams can result in up-skilling of staff
Department of Health (2011) An Outcomes Strategy for Chronic Obstructive Pulmonary Disease (COPD) and Asthma in England.
Department of Health (2008) End of Life Care Strategy – Promoting high quality care for all adults at the end of life.
Gardiner C, Gott M, Ingelton C (2012) Factors supporting good partnership working between generalist and specialist palliative care services: a systematic review. British Journal of General Practice; 62: 598, e353-362.
Gold Standards Framework (2011) The GSF Prognostic Indicator Guidance.
National Council for Palliative Care (2014) National Survey of Patient Activity Data for Specialist Palliative Care Services – MDS Full Report for the year 2013-2014.
Solano J, Gomes B, Higginson I (2006) A comparison of symptom prevalence in far advanced cancer, AIDS, heart disease, chronic obstructive pulmonary disease and renal disease. Journal of Pain and Symptom Management; 31: 1, 58-69.
Spathis A, Booth S (2008) End of life care in chronic obstructive pulmonary disease: in search of a good death. International Journal of COPD; 3: 1, 11-29.