Northampton General Hospital NHS Trust was chosen as one of seven pilot sites to work with the Cancer Services Collaborative Improvement Partnership (CSCIP) to test strategies to improve the patient experience.
Keywords: Cancer care, Lung cancer, Patient involvement, Patient pathway
Authors Liz Summers, BSc, RGN, is cancer lead nurse; Lisa Wells, BSc, RGN, is lung cancer clinical nurse specialist; Karen Spellman, MSc, BSc, is cancer lead manager; all at Northampton General Hospital NHS Trust.
Abstract Summers, L. et al (2007) Improving quality of care in the lung cancer pathway.
Lung cancer is one of the most common cancers in the UK, and healthcare professionals face significant challenges in supporting patients and their families throughout the rapid and often short illness trajectory. Northampton General Hospital NHS Trust was chosen as one of seven pilot sites to work with the Cancer Services Collaborative Improvement Partnership (CSCIP) to test strategies to improve the patient experience. Results from the testing phase have shown a reduction in the length of hospital stay, enhanced quality of care and an increase in the number of patients able to die in a place of their choice.
Lung cancer is one of the most common cancers in the UK, with approximately 35,000 new cases each year (Registrar General, 2004). The lack of early presenting symptoms results in patients often being diagnosed with advanced disease, where the emphasis is on palliative treatment and supportive care (Claxton, 1999). Unfortunately, over three-quarters die within one year of diagnosis (Cancer Research UK, 2002) with a median survival rate of four months (Stanley and Kelly, 2004).
The consequence of moving quickly through an illness trajectory presents a major challenge for patients, families and healthcare professionals. As the disease progresses, patients have to contend with worsening symptoms. These may include: breathlessness; cough; haemoptysis; pain; hoarse voice; fatigue; anorexia; weight loss; and adverse psychological and social effects (Krishnasamy et al, 2007). There may be fear of physical suffering, loss of role and lifestyle change, difficulties in relationships and concerns over the future. Reactions of anxiety, depression, anger, guilt and grief often ensue (Sawyer, 2001). Indeed, some patients report their psychosocial symptoms to be more worrying than their physical symptoms (Hill, 2003).
The importance of optimal management for patients with advanced lung cancer was outlined in the NHS Executive manual for improving outcomes in lung cancer (Department of Health et al, 1998). It emphasised the need to take account of individual needs and preferences and provide care that is culturally and socially sensitive, underpinned by good communication between healthcare professionals and patients.
Continuity of care - based on the needs of individuals and their families - has been a major theme in the UK since the NHS Community and Care Act 1990 (DH, 2001; 1997). However, lung cancer patients often spend their last few months in and out of hospital and many die without their needs and wishes having been explored. This is supported by results from a national survey of lung cancer patients, which suggests they experience multiple problems with very little help from healthcare professionals (Krishnasamy and Wilkie, 1999).
The lung cancer project
Northampton General Hospital NHS Trust was chosen by the CSCIP as one of seven original pilot sites invited to explore the inpatient experience and test strategies to improve the patient pathway.
Initially, a service improvement facilitator from the Leicestershire, Northamptonshire and Rutland (LNR) Cancer Network carried out a three-month review of all cancer patients admitted as an emergency via A&E or the emergency admissions unit (EAU). The aim was to identify which patients were admitted and why. Breathlessness in patients either with a known lung cancer diagnosis or in patients who went on to be diagnosed with lung cancer was the most common reason for emergency admissions during that time.
It is well documented that breathlessness is a common and distressing symptom for patients with cancer and is a particular problem for those with lung cancer (Lowden, 1998). Studies suggest that the symptom is reported by up to 73% of lung cancer patients during the course of their illness (Corner et al, 2005).
Increasingly, breathlessness is recognised as more than a symptom of disordered breathing. The adverse effect of breathlessness on quality of life can be enormous, with a devastating effect on patients and their families. It interferes with lifestyle and the most basic activities of daily living, often resulting in feelings of anxiety and depression. Corner (2001) described an integration model in which the emotional aspects of breathlessness are inseparable from the sensory experience and the pathophysiological mechanisms.
A more detailed analysis of 10 lung cancer patients admitted as emergencies went on to highlight:
- Ten patients had a total of 18 admissions (some patients were admitted more than once); five of these patients died in hospital and there had been no place- of-death discussions;
- The total length of stay for the 18 admissions was 184 days;
- For 87 of the 184 days (47%), the patients were medically fit to be discharged or did not need to be in hospital;
- Discharge planning had often not been started until the patient was deemed medically fit by clinicians;
- Funding for care packages was not applied for as early as it could have been;
- Discharge was delayed as a result of waiting for care packages;
- Some patients were waiting unnecessarily in hospital for tests and the result of the lung cancer multidisciplinary team discussions;
- Eight of the 18 admissions could potentially have been avoided.
In order to address the needs of lung cancer patients with breathlessness, a project group was established. It consisted of members of the lung cancer multidisciplinary team, the cancer management team and the LNR Cancer Network service improvement team. The aims of the lung cancer project were to:
- Improve the experience of breathlessness for lung cancer patients;
- Prevent unnecessary admissions for these patients;
- Reduce the length of stay for lung cancer patients admitted as an emergency by discharging them when they are medically fit.
Strategies for testing improvements in the lung cancer patient experience
Three key areas of actions were tested:
- Non-pharmacological management of breathlessness in the community;
- Community key-worker support;
- Emergency admission unit alert system.
Non-pharmacological management of breathlessness
The literature indicates that patients who are taught interventions to manage breathlessness show an ability to cope with the symptom and report a reduction in physical and emotional distress (Bredin, 1999). However, there is concern that patients may find it difficult to complete a taught breathlessness programme due to deterioration in symptoms; they may also die before completing the programme (O’Driscoll, 1999; Corner et al, 1996).
The aim of the Northampton project was to actively support people living with breathlessness by empowering patients and carers to manage symptoms at home. This was achieved by using community matrons, the hospital Restart COPD team and the oncology occupational therapist, to assess patients at home and develop programmes of care based on individual need. The specialist palliative care team supported patients with pharmacological symptom relief and saw patients with complex emotional/spiritual needs. The lung cancer clinical nurse specialist (CNS) identified people for the project at various stages of the patient pathway and referred them to the appropriate healthcare professional. She then acted as a consultant, providing expert knowledge, information and support as needed.
Community key-worker support
NICE guidance on improving palliative care for adults with cancer explains that a key worker is a person who - with the patient’s consent and agreement - takes a key role in coordinating care and promoting continuity, ensuring the patient knows whom to access for advice (NICE, 2004).
The aim of this intervention was to ensure that patients with advanced disease who did not have complex palliative care needs would be referred to a designated key worker in the community.
Having a community key worker would provide proactive symptom management and emotional support for all patients diagnosed with advanced lung cancer. The project focused on lung cancer stages 3b and 4, according to the TNM classification for non small-cell lung cancer (Mountain, 1997). Stage 3b means locally advanced disease and stage 4 denotes metastatic spread of the disease. It was hoped that the teams could provide patients with techniques for self-management of breathlessness and enough support to avoid them hitting a crisis point at home. As key workers, they would act as the lead in primary care, supporting patients and families and referring to other health professionals as needed, including the specialist palliative care team.
In order to assess whether a potential admission to hospital had been averted, the key worker used a validated assessment tool. This tool has been developed by Northampton PCT (unpublished) and is used across the PCT to identify when an intervention by primary care practitioners has prevented an admission.
Emergency admission unit alert system
To reduce the length of patient stay, an alert system from the emergency admissions unit (EAU) to the lung cancer CNS was initiated. This is a process whereby staff on the EAU alerted the specialist nurse of any known lung cancer patients who were admitted. The lung cancer CNS would see patients within 24 hours of the alert, with the exception of referrals over the weekend. The CNS acted as the hospital key worker, supporting patients and families throughout the inpatient stay, proactively managing the care pathway in consultation with the multidisciplinary team.
From June 2006 to January 2007, 65 patients were assessed for breathlessness as part of the project, 39 of whom had symptoms of shortness of breath. Of these, 28 took part in the testing and were referred for additional community support. The results showed that:
- The patients’ breathlessness experience was improved by individual interventions offered by the community key worker. However, there was no significant improvement in the amount of breathlessness experienced by patients;
- The admission rate fell from the baseline study. At baseline, there were 10 patients with 18 admissions, compared to 28 patients with nine admissions at the end of the third phase of the project. Six admissions were reported as having been avoided, although this was difficult to measure because of the subjective nature of the assessment tool and the trajectory of the disease;
- The key-worker role provided continuity of care for lung cancer patients following discharge and before they needed specialist palliative care. Their input enabled patients to be cared for in a proactive way, and difficulties experienced by patients and carers were acted on before they became unmanageable.
- This key worker role enabled the CNS to discuss and manage admissions to hospital and there was liaison between patients’ GPs and the specialist nurse. However, not all patients wanted the support of a key worker in primary care. This was more evident in younger patients who declined to take part in the project because they did not want health professionals visiting them at home as this would interfere with their ‘normal’ life. These patients continued to be supported by practitioners as their condition indicated;
- The average length of hospital stay at baseline for lung cancer patients was 12.5 days. At the end of the second phase of the project, this had fallen to 8.8 days. It now stands at 7.1 days.
In the baseline audit, no discussions about place of care were documented in the hospital notes. At the end of the first phase, there were eight patients with a place of care discussion documented because of the specialist nurse’s input; seven of these had subsequently died, with five having had their place of care met. This was seen as a positive development and in line with national recommendations.
There was, however, a feeling that care had been duplicated in some cases, with several healthcare professionals visiting patients at home for breathlessness interventions. Seeing different practitioners can be a source of dissatisfaction and hinders patients from establishing rapport and trust with carers (Corner, 2006).
Extension of the lung cancer project
Since February 2007, the alert system has been extended to all patients with a known cancer diagnosis admitted via EAU. The alert is faxed to cancer services and the lead cancer nurse coordinates the response to this alert by the appropriate nurse specialist or the specialist palliative care (SPC) team. Feedback from the specialist nurses indicates that the alert system has enabled them to be aware of patients earlier and support them through their inpatient experience. Symptoms have been dealt with promptly and place-of-care discussions have been instigated. However, the alert system has not been successful across all different tumour groups, particularly for patients with prostate cancer who tend to be admitted for symptoms unrelated to the cancer.
The breathlessness strategy was managed by the MDT, which undertook the additional work within their existing resources. The testing showed the effectiveness of managing patients’ symptoms in the community. However, the method of implementation was difficult to sustain and has highlighted a need for a more integrated approach between primary and secondary care in supporting patients living with breathlessness.
Evaluation of the patient alert has demonstrated the need for an automated system, which is triggered when a known cancer patient is admitted to hospital. The trust is exploring how this could be linked with the Gold Standards Framework to enhance effective communication between primary and secondary care. This is being piloted by other trusts as part of the continued work with the CSCIP.
The testing has demonstrated that focusing on reasons for admitting cancer patients can highlight specific needs for that group. Breathlessness and anxiety have been found to be significant reasons why lung cancer patients struggle to cope at home. These patients often end up being readmitted when this could have been avoided. Once patients are in the hospital system they may experience a longer stay than necessary.
The three strategies tested the following: managing symptoms in the community; integrating the key-worker role between primary and secondary care; and an effective alert system from emergency admission. The combination of the strategies has had a significant impact on the lung cancer pathway. This has enabled patients to be cared for at home, has improved confidence in managing symptoms and, where patients are admitted to hospital, has reduced length of stay.
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