Setting up an out-of-hours palliative care helpline. This is an extended version of the article published in Nursing Times; 104: 24, 28-29.
This article describes the development and implementation of a nurse-led, out-of-hours advice and information telephone service for patients with palliative care needs. Palcall is run from the inpatient unit at Saint Catherine’s Hospice in Scarborough.
The article outlines the process of setting up the service, and includes an audit of calls and feedback from service users. One unique feature of this service is that patients can name other people, usually friends and relatives, who may call on their behalf; about 65% of calls are received from carers. Healthcare professionals can also access the service for advice and information, and doctors and nurses attending patients out of hours have used it.
Call volumes continue to increase and the service has received extremely positive feedback.
Mary Elliker is Palcall administrator; Louise Barnes, BSc, PGCE, RGN, is lecturer/practitioner; both at Saint Catherine’s Hospice, Scarborough.
The World Health Organization (2004) has defined palliative care as: ‘An approach that improves the quality of life of patients and their families facing the problems associated with life-limiting illness, through the prevention and relief of suffering by means of early identification and impeccable assessment of treatment of pain and other problems, physical, psychosocial and spiritual.’
Palliative care services are also required to provide access to out-of-hours support and advice (Murray et al, 2005), and this is considered to be an essential part of quality end-of-life care. NICE (2004) recommended, as a minimum requirement, the availability of specialist palliative care telephone advice 24 hours a day, seven days a week.
Each area has its own challenges - in Scarborough the rural catchment area presents logistical problems for many people wanting to access services and support. Most patients are admitted to Saint Catherine’s Hospice with symptom control problems.
The following data describes patients admitted to the hospice:
Some 60% of patients return home or to another care setting;
Only 74% of those admitted have a cancer diagnosis;
The average length of stay is currently 11 days;
Bed occupancy runs at 86%, with rapid turnover and most patients returning home.
These collective factors meant that providing supportive out-of-hours care was a real challenge. Palcall was developed as a local response to provide support and advice for palliative care patients out of hours. Two of the key aims of specialist palliative care services (Charlton, 2002) focus on improving quality of life for patients and families, and supporting professionals involved in their care. The Palcall service addresses these key aims as it is available to patients, carers and healthcare professionals and provides much-needed advice and support, thus improving quality of life for patients and families.
The hospice covers the Scarborough, Whitby and Ryedale area in Yorkshire. This is a rural district covering approximately 1,000 square miles and includes six towns and numerous villages. Offering patients a comprehensive telephone support service seemed the ideal solution to the problem of servicing this widespread area.
The hospice had already made a successful bid to the Big Lottery for funding and had been awarded a three-year grant. This grant was vital to an organisation which receives only 14% of its funding from health authority grants and relies on public donation for the remainder.
Setting up the service
In July 2003 the administrator started work to get the service off the ground. Preparation was the key factor in establishing Palcall. We had allowed five months to produce all the paperwork needed, such as patient information leaflets, registration forms and consent forms.
Another vital aspect of preparation was training the nurses who were to take the calls. They were all experienced palliative care senior-grade staff already working in the inpatient unit. However, handling a situation on the telephone is very different to doing so face-to-face.
The nurses were aware of the limitations of assessing a problem on the telephone, such as not being able to physically asses a patient and having to use a verbal description of symptoms. In addition, nurses do not have any body language clues on the telephone. An example of this would be that a patient can sound angry when they are stressed.
We decided to liaise with healthcare professionals outside the hospice who were also involved in patients’ care, to ensure they would be supportive of this new initiative.
A Palcall steering group was set up, which was a requirement of the Big Lottery funding. A range of practitioners joined the steering group, along with patient representation. Group members included a local GP, hospice consultant, nursing staff from both the hospice and the community, a senior manager from North Yorkshire and York PCT, a representative from the patient information group and also from the local Carers Resource. The input from such a variety of people and professionals was very beneficial during the service’s first year. The steering group met every three months in the first year and then every six months in the subsequent two years. The patient information group and Carers Resource helped immensely in ensuring that all written patient information was in plain English and in an easy-to-read format.
Preparation for the service’s opening
Through discussion it became apparent that the best way to provide nurses with helpful information would be to register patients with Palcall. This would have to be done by a practitioner involved in their care and, in most cases, was likely to be carried out in the community. While we wanted to avoid making the registration forms too onerous, it was necessary for them to provide a core amount of information. The form includes: diagnosis; preferred place of care; current medication; next of kin; main carer; and GP details.
We also recognised that many calls were likely to come from families and carers rather than patients. Therefore a consent form was produced, which patients could use to name any people who could contact the service on their behalf for advice and information. This also included all healthcare professionals involved in their care. This signed form would be returned with the completed registration form.
A flowchart was designed (Fig 1) showing the registration process and a guide for eligibility. Patients are given a booklet outlining the service and what they can expect from it, and a credit-card style ‘gold card’ with the contact number printed clearly, to keep by their telephone. These are presented in a folder with the Palcall operating hours and contact number shown clearly on the cover.
We presented all the paperwork to people who were likely to use it to obtain feedback and to ensure that it was as manageable as possible.
Nurses were provided with a form to complete after they have taken a call, to record all details on the consultation. Once again this needed to be as user-friendly as possible. We planned that patients’ GPs would always be informed about a call, and as a result we designed a specific form for this purpose.
All these forms were constantly reviewed once Palcall was in operation. Some amendments were made in response to user feedback, such as adding a prompt on the call-recording form to remind nurses to check if patients have received any recent treatment that the service is unaware of.
We felt it was essential that nurses taking the calls were provided with specific call-handling training. In the first instance we employed the Telephone Helplines Association, which came to the hospice and provided a full day of training on telephone techniques. The organisation works in interactive groups and we held two full-day sessions so all potential call-handlers could attend. We supported this with a number of in-house sessions where nurses could discuss their concerns about the service and where ideas could be frankly exchanged. This active involvement was integral to successful change management (Wright, 1989). Training is a continuous process, as new nurses join the hospice and it is also necessary to keep skills updated. All training is now managed in-house.
Liaising with healthcare professionals
We undertook the following work to inform local practitioners about the new service:
We wrote to every GP surgery in the area, to inform them about the new service and what Palcall could offer them;
As many surgeries as possible were visited so the service, and any issues doctors might have, could be discussed;
We gave talks about the service to groups of district nurses;
A visit was made to the local A&E department;
Discussions were held with Macmillan nurses;
We visited the out-of-hours call-handling centre for the area in York, as we felt it was vital staff were aware of the service and also that we could understand how they operated;
We also visited the current GP out-of-hours centre at Scarborough Hospital, to ensure they were fully aware of how Palcall could be used.
The five months leading up to the opening of Palcall were very busy; however, this initial preparation was extremely helpful in paving the way for the success of the service. Since Palcall began, 1,910 patients have registered with the service and 2,860 calls have been received, all of which were made out of surgery hours.
Hours of operation
The Palcall telephone line is open Monday to Friday from 6pm until 2am (eight hours). On a Saturday, Sunday and Bank Holiday, it is open from 10am through to 2am the following morning (16 hours). These opening hours were decided on after carrying out research into what were likely to be the times that callers would most need access to support and advice. Statistics showed it was rare to receive calls after midnight on the normal hospice phone line. The out-of-hours call centre in York and the out-of-hours doctors’ service in Scarborough both had evidence that their call volume dropped after 2am.
Palcall in operation
Palcall operates from a separate, dedicated telephone line. This presented its own logistical problems. The inpatient unit at Saint Catherine’s Hospice is spread over a wide area, with the Palcall office in the centre. With just one telephone in the Palcall office, it could be impossible for nurses to hear it ringing, if they were in a patient room at the other end of the unit. After some trial and error, there is now one telephone situated in the Palcall main office and two additional telephones at either end of the inpatient unit. The nurses’ pagers are also linked to the telephone, so they are alerted when it rings.
The Palcall nurse responsible for taking the helpline calls works a normal shift on the inpatient unit, so is an extra nurse above the usual quota. If a call comes in when the Palcall nurse is busy then another senior nurse will take the call.
The call is taken in the Palcall office where patient documentation is kept, so nurses can quickly access these while dealing with the call. The nurses always take the caller’s name and telephone number immediately, so that if the caller hangs up or is cut off we can call them back.
If it is thought the patient needs the services of either a district nurse or a doctor, then the Palcall nurse will make this call for them.
One key feature that we were able to arrange with the out-of-hours call-handling centre was the ability to call them directly rather than going through NHS Direct. This has proved to be beneficial for patient care, as all our patients are flagged by the out-of-hours doctors’ service as being P1 (priority 1) and their standard is to make a GP visit to Palcall patients within one hour of receiving our call.
This provides support for patients and carers, as it means they do not have the distress or inconvenience of having to relate all the symptoms and their current situation to a call-handling centre. Feedback from callers has highlighted this as one of Palcall’s major benefits.
When necessary, Palcall nurses are encouraged to contact the caller again at a later stage to see if they need further assistance. Callers are also advised to contact the service again if they have any further concerns.
When the call is completed nurses complete the call-recording form. They usually make notes while taking the call, and then complete the form when the call has finished. Nurses have found it is too distracting to attempt to complete a form while taking a call. They record what the caller has said, their response and any other action they have taken.
The Palcall administrator then processes this form the following day. Any healthcare professional involved in the patient’s care will be informed as appropriate, usually by telephone. This would usually be their district nurse or Macmillan nurse. In addition, the patient’s GP is always informed about the call in writing.
Palcall is also accessed by healthcare professionals. On-call district nurses, Marie Curie nurses and on-call doctors all use the service both for advice and information about a patient who may be unfamiliar to them.
We monitor and audit the service. In the first instance, we had to provide detailed audit figures for the Big Lottery. They required us to set our own goals and then to report back on an annual basis.
We also wanted to monitor the service closely for our own quality standards. A record is kept of all calls with details of time of day, length of call, type of caller, the reason for the call and whether or not a GP or district nurse needed to be called out. These figures are audited every three months (Fig 2).
A questionnaire is sent to first-time callers to obtain feedback on the quality of the service received, Tritter et al (2004) emphasised the need for an integrated system of user feedback to constantly audit services. Scores range from 1-5, with 1 being excellent and poor 5 - the feedback figures are consistently high (see Fig 2). Callers are also given the opportunity to comment on Palcall. One word that repeatedly appears in this feedback is ‘reassurance’.
Lugton (2002) discussed the benefits of telephone support in reducing carers’ anxieties. Both patients and carers report they are immensely reassured to speak to a palliative care specialist nurse based at the hospice, who has knowledge of the individual patient and, most importantly, the time to talk about their current situation.
Problems and solutions
As Palcall was launched with no role model for reference, we did not know what problems might be encountered. Before the opening, we did attempt to pre-empt situations that we thought might arise, by discussing possible situations with nurses. Some nurses felt they might not be taken seriously by on-call doctors, while others were worried about potentially being asked for advice by them. In fact, this did not proved to be the case as on-call doctors do contact the service for advice about drug conversions and syringe drivers, and nurses have found they are competent to deal with these queries.
One situation which nurses do find difficult is not being able to visit some callers. Nurses taking the calls sometimes feel they could deal with the caller’s problem very quickly if they were in situ and it is frustrating for them when they have to call out a doctor. There is no immediate solution to this. We can reassure our nurses that the work they do is of enormous benefit to patients, and they only have to read the caller questionnaire comments to see this.
Another concern nurses had was that they might not be able to answer callers’ queries. To help with this we have provided evidence-based protocols and resource material, readily accessible by the telephone and set out clearly in a folder. Nurses were reassured that if they did not know the answer, it would be perfectly acceptable to tell the caller they would need to check this point and call them back. Nurses have access to colleagues on the ward to discuss issues with, an on-call team leader and also an on-call hospice doctor. In fact, since the service started, they have very rarely needed to contact the on-call hospice doctor, and in 72% of cases they manage the call themselves (see Fig 2).
One of the challenges for Palcall nurses is that they never know what to expect when the telephone rings. Calls can be straightforward, for example, asking if the patient can have another dose of morphine salts. However, they can also be protracted and complex, especially when patients are in the terminal stages, so it can be difficult for nurses taking calls. This is why the Palcall nurse is an additional staff member in the inpatient unit. It was always our aim to ensure the service enhanced patient care as a whole and did not detract from the care patients received while in the unit.
While the registration rate remains fairly constant, the call rate is still seeing an upward trend (Fig 3 and Fig 4). The call rate over the Christmas period in 2006 was substantially higher than in other years, which may have been due partly to the fact it was a four-day closed period for GP surgeries.
Relatives caring for loved ones can feel isolated and may have difficulty coping. Around 65% of calls received come from carers and the support and advice offered allows them to continue and, in many cases, prevents an acute admission. This is evidenced by the caller feedback questionnaires and anecdotal evidence from healthcare professionals. Wiles (1999) cited an increase in acute admissions as a probable outcome to carer stress. About 50% of calls are made on a weekend during the day. Only 28% result in a doctor having to visit the patient.
The Palcall nurses are running a very successful service which has proved to be of huge benefit to patients and carers, both paid and unpaid. When the service first started Saint Catherine’s Hospice could not have foreseen how busy it would become. Our nurses have risen to the challenge and are providing callers with a range of advice and support, including clinical, emotional and practical help.
We know from feedback that some patients are able to fulfil their wish to die at home because families feel able to cope, with the support they receive from Palcall. This feedback has come via the 385 caller feedback questionnaires and also anecdotally from healthcare professionals. The service is everything the hospice had originally hoped it would be, and is constantly exceeding our expectations in terms of call volume and positive feedback.
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Lugton, J. (2002) Communicating with Dying People and Their Relatives. Abingdon, Oxon: Radcliffe Medical Press.
Murray, S. et al (2005) Primary palliative care services must be better funded by both day and night. British Medical Journal; 330: 7492, 671.
NICE (2004) Improving Supportive and Palliative Care for Adults with Cancer. www.nice.org.uk
Tritter, J. et al (2004) Improving cancer services through Patient Involvement. Abingdon, Oxon: Radcliffe Medical Press.
Wiles, R. et al (1999) Improving palliative care services: a pragmatic model for evaluating services and assessing unmet need. Palliative Medicine; 13: 131-137.
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