The Gold Standards Framework recommends advanced care planning. The clinic gave nurses the ideal opportunity to optimise patient choice and reduce anxiety
Lawton C (2010) Developing a nurse led hospice outpatient clinic to improve palliative care services. Nursing Times; 106: 34, 18-20.
A team of palliative care clinical nurse specialists at the Phyllis Tuckwell Hospice in Farnham, Surrey, set up a hospice based outpatient clinic to improve services for patients with cancer. This article examines how the team used clinical audit, a staff questionnaire and patient feedback to evaluate the service and make recommendations for the future development of the clinic.
Keywords Clinical nurse specialist, hospice, outpatient clinic, audit, cancer
- This article has been double-blind peer reviewd
Advice for setting up a nurse led hospice based outpatient clinic:
- Define the aims and priorities;
- Ensure the multidisciplinary team recognises the need for the service and plan publicity so the aims of the clinic are clear;
- Invite potential referrers and colleagues from within the multidisciplinary team to visit the clinic and gain insight into its operation;
- Ensure there is a robust policy for referring a patient back to the clinical team if their condition deteriorates;
- Evaluate the service at the earliest opportunity.
The end of life care strategy recommended the delivery of high quality services for patients needing palliative care, with access to rapid, specialist advice and clinical assessment (Department of Health, 2008).
The eight clinical nurse specialists (CNSs) at the Phyllis Tuckwell Hospice in Farnham, Surrey, manage patients with complex palliative care needs. They support those with cancer and non-malignant life limiting illnesses by providing specialist palliative assessment in the community. They also provide education and holistic patient care, including symptom management. They are continually looking at how to improve the patient and carer experience, within budget and without compromising efficiency.
The palliative care multidisciplinary team (MDT) at the hospice includes doctors, nurses, social workers, counsellors, occupational therapists, physiotherapists and complementary therapists. Although many members of the MDT saw patients in the hospice outpatient setting, the CNS team rarely brought patients into the hospice as outpatients - the view being that they preferred to be seen at home. It was also difficult to find an appropriate room in which to see patients in the hospice at short notice, and those with non-urgent needs were not seen in the recommended time set by the hospice for processing referrals.
The CNS outpatient clinic was set up in May 2008. The aims were to:
- Optimise patient and carer choice for those patients well enough to visit the outpatient department;
- Enable patients and carers to visit the hospice to reduce the anxiety normally associated with hospice care;
- Reduce travel and location constraints for CNSs, saving time that could be used to provide patients with quicker access to a healthcare professional;
- Give patients the opportunity to see other members of the MDT;
- Reduce the need for home visits, which may interfere with patients’ lifestyles.
One of the aims of the national cancer programme (DH, 2000) is to improve care pathways and access to specialist nursing advice. The outpatient clinic is managed by one CNS, whose role involves:
- Providing an initial consultation to give in depth clinical assessment of patients with specialist palliative care needs;
- Receiving new referrals from within the CNS department. This may take the form of a one off consultation with return to the referrer as appropriate;
- Reviewing assessments of known patients at the request of other healthcare professionals within the hospice;
- Reviewing patients referred from a CNS for a low level review. If stable, these patients may be discharged back to the primary healthcare team with the option to self refer if there are further specialist palliative care needs;
- Carrying out joint reviews with other members of the MDT.
- The end of life care strategy (Department of Health, 2008) recommends that all patients with palliative care needs should have access to rapid, specialist advice and clinical assessment.
- A hospice based nurse led outpatient clinic was set up in May 2008 to improve services for patients with cancer and palliative care needs.
The clinic is managed by a palliative care clinical nurse specialist who carries out clinical assessments, receives new patient referrals and reviews existing patients as part of a multidisciplinary team.
Outpatient time used
Data from 63 patient referrals between October 2009 and April 2010 were analysed to assess the amount of unused outpatient time and the reasons for cancellations:
- Forty nine patients attended their appointments, meaning 78% of the time allocated was used;
- Fourteen appointments were cancelled. Of the 22% of unused time, 21% of cancellations(three patients) were due to heavy snow during the data collection period;
- Fifty seven per cent (eight patients) of cancellations were due to the patient’s condition deteriorating, meaning they required a home visit or admission to hospital. Most were new patients who deteriorated before being seen and not those needing review;
- Twenty one per cent of unused time was due to the patient being well enough not to need a clinic visit (two patients) or transport problems (one patient).
CNS referral rates
As the main referrers to the clinic, the CNS team completed a 10 point questionnaire. This covered referral rates, how the clinic affected personal work flow, and the impact of the clinic on patients and the service.
Responses to the questionnaire revealed significant variation in the referral rates for individual CNSs during the audit period (Fig 1). While six CNSs carried out at least two referrals - one referring 11 patients - two had not referred any to the service. This signified the CNSs were not promoting the service by asking patients if they wanted to access the outpatient clinic. Only three CNSs consistently mentioned the clinic at triage.
Of the 63 referrals audited, only three were direct review referrals. The CNS role has traditionally been patient centred and close relationships are often formed between nurse and patient (Skilbeck and Payne, 2003). When asked about the value of another CNS seeing the patient, one of the team said it may be difficult for the patient to reconnect emotionally to a new CNS. However, since the profile of the clinic has been raised, CNSs have said that this is something they will consider in the future.
The National Institute for Health and Clinical Excellence (2004) recommended that patients with cancer be given a choice of services offering support and be consulted about the development of these services. Twenty patients were asked to complete a satisfaction questionnaire:
- Fifteen responded, all of whom felt their expectations had been fulfilled and were happy to continue being seen in the clinic;
- Forty seven per cent were happy to be seen either in the clinic or at home;
- Thirty three per cent preferred to be seen at home;
- Twenty per cent opted to be seen in clinic.
Accessing other services
Of the 15 patients who responded to the questionnaire, 12 said they wanted access to more than one service. Only two of the CNS team had tried to access more than one service when referring. Eight referrals had been done by the CNS running the clinic. She found it difficult to coordinate with other members of the MDT as many had full diaries or were off duty when the outpatient review was arranged. Some 16% of the total referrals made had been for two or more concurrent appointments, usually with the complementary therapy team or the patient and family welfare department.
NICE (2004) suggested that many aspects of palliative care are applicable earlier in the disease trajectory and that many patients could benefit from referral at the point of diagnosis, not just towards the end of life. The Gold Standard Framework (www.goldstandardsframework.nhs.uk) says the preplanning of future care should be proactive in all care settings.
Seeing patients with low level needs in the clinic proved to be an ideal time to approach advanced care planning, enhancing coping strategies for both patient and carer. Husband (2008) cited Clark, who suggested seeing patients earlier in their cancer journey also allows for more emotional openness. Trust deepens, increasing the therapeutic value by touching on many aspects of the patient experience.
Bennett et al (2009), in discussing care of patients with motor neuron disease, said one of the reasons for setting up a hospice based, nurse led clinic for them was to encourage them to acknowledge palliative care as part of ongoing support, not just for the end of life.
The National End of Life Care programme (www.endoflifecareforadults.nhs.uk) describes a community based nurse led palliative care clinic set up in Luton in 2006. District nurses were initially concerned that a palliative care CNS seeing a patient earlier in the diagnosis would affect their own relationship with the patient. Inviting colleagues to sit in on the clinic assuaged these fears and the service saw a 30% increase in referrals. Patients said it gave them more choice over where they are seen.
Mack (2010) described a community palliative care nurse led clinic in Norfolk. Patients who attended the clinic described it as valuable, enabling them to be seen on their own with the CNS and by more than one member of the MDT. However, only 12% of the 79 patients suitable accepted the offer to visit the clinic - fragility, fatigue or transport problems being cited as reasons for refusing. The study also found patient expectation was a possible reason for low acceptance. Education for the nurse who is conducting triage regarding the added dimensions of the outpatient clinic, and translating this to the patient and relatives, are therefore essential.
Following the development of the clinic, some patients with non-urgent referrals have opted to be seen more quickly in the outpatient setting. A number of issues not determined by telephone triage have been identified and changes to care or referral to other healthcare professionals have been carried out quickly.
The clinic CNS has occasionally discharged a patient after a single visit, with information about support groups held at the hospice or advance care planning. Some patients have remained outpatient clients until there is a need for them to have home visits.
NICE (2004) suggested patients and carers want more face to face communication to help them make important decisions about care. The provision of emotional care and support to both patients and relatives experiencing emotional difficulties is a key component of the CNS role (Skilbeck and Payne, 2003).
When a patient is accompanied by the person of their choice they are able to express their emotions more openly. One patient brought her best friend with her, rather than her family, as she felt she would be more relaxed with her friend. In addition, carers are seen on their own at the clinic with the patient’s consent. This gives carers an opportunity to discuss their concerns and fears without being interrupted or overheard.
The outpatient clinic was the ideal forum for the CNS to receive guidance in the advanced physical assessment course. This course is part of an MSc aimed at senior nurses involving physical examination and clinical reasoning to enhance decision making in differential diagnosis. This leads to improved clinical practice as the nurse recognises problems according to the cues given and examination of the patient (Baid, 2006).
The CNS mentor was a specialist palliative care doctor who was able to book time at the clinic to oversee assessment. The use of hospice equipment that may not have been available in the home was also useful when making a differential diagnosis. For example, the use of a saturation monitor confirmed the possibility of a pulmonary embolism in one patient. Use of an examining couch in the day hospice doctors’ office also proved beneficial for the health and safety of both the nurse and patient - the bed can be raised and lowered to aid the nurse’s examining position and to help the patient to stand.
The following are plans under way or recommendations for future improvements:
- A central triage CNS has been appointed to offer choice to appropriate patients and book other services after a needs assessment;
- The triage nurse will be encouraged to offer a booked viewing of the hospice with a staff nurse before or after an afternoon clinic appointment;
- The audit results indicate the profile of the clinic needs to be raised within the team. One way of achieving this would be to rotate the CNS running the clinic every six months to allow CNS team members to recognise the benefits and explore the service;
- There are plans to produce leaflets for patients in the community and potential referrers;
- Doctors should be available to act as mentors during training or for consultation;
- The MDT must be made aware that they may be asked to see a patient, and that this could potentially require a change in their diary to suit clinic times;
- There are plans to set aside an area in the clinic with brochures and advanced care planning documents;
- Greater collaboration with an individual CNS is needed to avoid the sudden deterioration of a patient not known to the CNS team as a whole.
The CNS team felt the outpatient clinic was beneficial to patients and relatives and improved individual nurses’ workflow. One CNS said coming to the hospice was “a good introduction to the hospice environment and ethos”. Another said it gives patients “more of an informed choice about where they choose to die”.
The audit showed patients want this type of service and patient expectations of what the hospice offers are being met. One patient said she had learnt, “there was so much more to the hospice than [it] just [being] a place to die”. If the perception of the hospice as “just a place to die” can be challenged, then this must be a step forward.
Baid H (2006) Differential diagnosis in advanced nursing practice. British Journal of Nursing; 15: 8, 1007-1011.
Bennett W et al (2009) Developing hospice-based nurse-led clinics to improve care for patients with MND. British Journal of Neuroscience Nursing; 5: 5, 231-234.
Department of Health (2000) The Nursing Contribution to Cancer Care: A Strategic Programme of Action in Support of the National Cancer Programme. London: DH.
Department of Health (2008) End of Life Care Strategy: Promoting High Quality Care for All Adults at the End of Life. London: DH.
Husband J (2008) The evolving role of the community nurse specialist in palliative care. British Journal of Community Nursing; 1: 26-30, 1462-4753.
Mack H (2010) Do community palliative care specialist care nurse led clinics provide an acceptable additional option? Palliative Medicine; 24: 2, 232.
National Institute for Health and Clinical Excellence (2004) Improving Supportive and Palliative Care for Adults with Cancer. London: NICE.
Skilbeck J, Payne S (2003) Emotional support and the role of clinical nurse specialists in palliative care. Journal of Advanced Nursing; 43: 5, 521-530.