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District nurses' referrals to home-based palliative nursing services

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Patients with cancer are estimated to spend at least 75 per cent of their last year of life in the community (Seale and Cartwright, 1994). Studies have shown that this group of patients prefers to remain at home for as long as possible (Hinton, 1994; Townsend et al, 1990; Dunlop et al, 1989), with most preferring to die at home.


VOL: 99, ISSUE: 14, PAGE NO: 34

Deborah Fellowes, MSc, CPsychol, is PaPaS research fellow at Marie Curie Palliative Care Research and Development Unit, Royal Free and University College Medical School

Margaret Goodman, MSc, MA, BA, RGN, is research nurse,Susie Wilkinson, PhD, MSc, RN, RM, RNT, RCNT, is head of palliative care research and senior lecturer in palliative care,Joseph Low, PhD, MSc, BSc, is senior research fellow,Fiona Harvey, BA, DipM, is research administrator; all at Marie Curie Palliative Care Research and Development Unit, Royal Free and University College Medical School

Patients with cancer are estimated to spend at least 75 per cent of their last year of life in the community (Seale and Cartwright, 1994). Studies have shown that this group of patients prefers to remain at home for as long as possible (Hinton, 1994; Townsend et al, 1990; Dunlop et al, 1989), with most preferring to die at home.

The Marie Curie Nursing Service (MCNS) was established in 1952 to provide nursing care to help patients to be cared for, and to die, in their homes. A research project commissioned in 1997 described and evaluated the care provided by the MCNS, and found that 94 per cent of patients who were served by the MCNS, and for whom the place of death was known, had died at home (Higginson and Wilkinson, 2002).

However, the study also found that other health care professionals were uncertain about when they should refer people to the service. The study also found a perception within the MCNS that some referrals were inappropriate (Higginson and Wilkinson, 2002).

As the MCNS relies on other professionals to enable patients and carers to gain access to the service, it is imperative that these professionals understand when to refer. It is also important that the MCNS identifies factors that inhibit referral. This study focuses on the perceptions that district nurses, the group making the most referrals to the MCNS, had about the service.

The aim of this study was to investigate the factors that influence and mitigate against referral to the MCNS. The specific aims were to:

- Evaluate the dependency level of a patient that would prompt a district nurse to refer him or her to the MCNS;

- Identify the stage of illness at which district nurses would consider referrals to the MCNS to be appropriate;

- Identify the factors that district nurses see as most likely to inhibit the referral process.

This exploratory study utilised a study-specific questionnaire, addressing issues of concern to the MCNS. Questionnaires with a pre-paid envelope were sent to district nurses. One reminder was sent to those who did not respond.

The MCNS is divided into 10 regions of the UK. To ensure a broad sample, four NHS community trusts were randomly selected from each MCNS region. These were stratified to maintain the mix of urban and rural trusts in each region. When contact details were obtained, questionnaires were sent to a random selection of 40 district nurses from each trust.

A descriptive analysis of the results was considered to be appropriate to this exploratory study. Where results for all respondents are given alongside regional results for purposes of comparison, these include respondents for whom the region was not known.

As a result of non-response or non-participation from three district nurse managers, 37 community trusts were surveyed. Questionnaires were sent to 40 randomly selected district nurses from each trust, except for eight trusts employing fewer than 40 district nurses. In these cases questionnaires were sent to all the district nurses.

total of 1,379 surveys were sent to district nurses, 14 of whom indicated that they were not in a position to refer patients to MCNS. Of the remaining 1,365 district nurses who were surveyed, questionnaires were completed by 879, a response rate of 64 per cent.

The district nurses taking part in the survey had been qualified for a wide range of periods, with some respondents having qualified up to 39 years ago. Other periods of qualification for the 859 respondents included:

- 19.8 per cent qualified within the past five years;

- 20.3 per cent qualified five to nine years ago;

- 22.5 per cent qualified 10 to 14 years ago;

- 15.0 per cent qualified 15 to 19 years ago;

- 14.8 per cent qualified 20 to 24 years ago;

- 7.3 per cent qualified at least 25 years ago.

The majority of respondents were based in general practice (54.9 per cent) or primary care trusts (48.6 per cent) with smaller numbers based in community trusts (24.3 per cent), primary care groups (17.3 per cent), community hospitals (2.2 per cent) or other settings (2.2 per cent). Respondents had the option of indicating multiple work-based settings on the questionnaire.

Most (91.8 per cent) had attended palliative or terminal care study days (868 respondents), but three-quarters (75.2 per cent) did not achieve a recognised palliative care qualification. The most common qualification, which was held by 112 respondents (13 per cent), was the ENB 931/WNB ‘Care of the Dying’ course.

District nurses were given a list of problems that patients may have, and asked at what level a patient would need to be before they would make a referral to the MCNS, if at all (Table 1). Problems that impacted on family or carers were the most frequently indicated reason for referral. Only 2.7 per cent said they would not refer for this reason. District nurses were least likely to refer patients to the service for pain (42.8 per cent) and communication problems (39.3 per cent).

Respondents were asked at what stage in a patient’s illness they would consider referring to the MCNS. Consideration of referral at an early stage of illness was rare, but became more common when palliative care was required. Referral occurred most often in terminal and end stages of illness (Table 2).

District nurses were asked what factors influence the timing of their referrals to MCNS (Table 3). The most frequently cited factors were the needs of the family and/or the carer(s) and the stage of disease. The timing of referral was less often influenced by the workloads of district nurses or the local MCNS.

When asked if there were any other influences on the timing of referrals, district nurses stated reasons such as patient/client needs, night/evening care required, professional judgement, and psychosocial issues for patients.

Respondents were asked what had prevented or delayed them from referring a patient with palliative care needs to the MCNS (Table 4). The most frequent reasons cited were:

- The district nurse was able to provide palliative care herself/himself;

- The patient did not have terminal cancer;

- No Marie Curie nurse was available.

A smaller percentage of respondents indicated that late referral or non-referral of patients was due to the belief that the local MCNS could not provide appropriate care, concern for overspending on the MCNS, or being unable to reach NurseLink (the centralised referral allocation system). When asked for any other reasons that had prevented or delayed referral to the MCNS, the main reason given was referral to other professionals such as local services.


District nurses’ comments about MCNS
Respondents were invited to provide any other information they wished regarding the MCNS. Almost 250 district nurses provided comments, with examples shown below. Many remarked on the value of the service to patients and their families.

‘… an invaluable service and enables many of our patients to die at home. If we as district nurses did not have access to MCNS then many patients would have to be admitted to hospice/hospital’.

However, district nurses expressed some dissatisfaction over the availability of the MCNS for rural areas, for holiday periods, for day care, for regular respite care, and for care at short notice.

‘It would be ‘ideal’ if a Marie Curie nurse could be guaranteed available whenever a family and patient need one. It is often a last minute acceptance to have help but not always available.’

Some district nurses attributed unavailability to both a shortage of nurses and to NurseLink, which they perceived as distant and inflexible in dealing with local needs.

A small number of respondents commented on other aspects of communication, such as difficulties with handovers to and feedback from Marie Curie nurses, and the extent of details required at referral. They also highlighted problems that arose when trying to coordinate a number of palliative care services for 24-hour care.

‘Unfortunately, Marie Curie cannot provide 24-hour care in exceptional circumstances. With help from Social Work Department and Hospice at Home, a complete package of care can be provided… it’s very stressful for district nurses not knowing until the last minute what care can be provided, but overall the service is wonderful.’

A minority of district nurses had only limited use of the MCNS, stating that the MCNS was only used for night sitting; or that they usually used other services for palliative care or were restricted in the frequency of referral for financial reasons. A few respondents commented on the timing of their referrals. For example, a referral at a late stage was often at the wishes of the family who did not want MCNS input earlier. A similar, small number of district nurses asked for more information on the services available from the MCNS.

This exploratory survey attempted to gather views on the MCNS from a representative selection of district nurses. Assuming the contact details were accurate, the district nurses taking part in the survey represented the full range of regions and the urban/rural mix served by the MCNS.

A response rate of 64 per cent is considered acceptable for a survey of this kind, although urban areas, especially Greater London, returned a lower proportion of responses.

As could be expected, the nursing experience and work settings of the respondents were varied. The majority of respondents had attended a study session on palliative or terminal care, indicating that they had an interest in the subject. However, attendance on most of these courses did not lead to a recognised palliative care qualification.

This is likely to reflect district nurses’ requirements for a wide knowledge base to meet the needs of their patient population, rather than an unwillingness to gain greater insight by obtaining a recognised qualification in palliative care. However, it may also mean that district nurses will not always have a full awareness of the benefits that can be obtained from palliative care support services. It is surprising that almost 70 per cent of district nurses felt that they had sufficient expertise to provide adequate palliative care but only 13 per cent had attained a recognised palliative care qualification.

From the responses, it is apparent that many see the MCNS as primarily providing respite care for carers, usually overnight. The relatively small proportion of nurses who indicated they would refer patients with pain and communication problems seems to indicate a lack of confidence in the skills and knowledge of the MCNS.

The findings from this part of the study also showed that there is a wide variation in district nurses’ perceptions of the level of dependency a patient would need to have for them to consider a referral to the MCNS to be appropriate. Some of this may be the result of historical referral habits. For example, in some localities before the introduction of NurseLink, the service could be composed entirely of registered nurses or nursing auxiliaries. There may also be a lack of awareness that all grades of MCNS staff are expected to complete a recognised qualification in palliative care on appointment and to attend regular updates.

Uncertainty is further reflected in the variation in the stage of illness at which district nurses perceive it to be appropriate to refer their patients. The published access criteria for the MCNS state that the service is available for any patient with a palliative care need (Box 1), yet less than half of district nurses (47.7 per cent) said they would often consider referring patients during the palliative phase.

The impression given is that consideration for referral is focused on the terminal and end stages of illness. This in itself is not surprising as these are the times when patient dependency and the support needs of the carers are at their highest.

However, a significant number of district nurses stated that the patient’s and his or her family’s unwillingness to have the service was a reason for non-referral. It is possible that the earlier introduction of the service to families might reduce this inhibition and allow them to gain additional support. Raising the profile of palliative care services, such as the MCNS, with the general population could raise the possibility of earlier referrals resulting from the initiative of patients and/or their carers.

Delaying or not referring to the MCNS at all was more likely to be based on perceived need or availability rather than quality of care. Comments about the quality of nursing provided by MCNS were overwhelmingly positive. Associated with the perceived lack of available nurses is a perception by respondents that they were able to provide appropriate care within their own service.

From the free text comments it was also apparent that district nurses valued the MCNS and that most concerns related to a lack of availability of staff, which unfortunately is a situation not exclusive to the MCNS. These concerns were exacerbated when referrals were made at short notice and led to obvious frustrations with the service.

Some comments suggested that a locally organised service would be more flexible and have access to more nurses, but as one district nurse commented: ‘As usual in nursing the terminally ill, we are usually busy or slack.’ Although there is a shortage of nurses, it is equally frustrating for the Marie Curie nurses to be available for work at those times when there are few referrals.

Conclusions and recommendations
The 1997 research project (Higginson and Wilkinson, 2002) examining the scope of the MCNS identified a lack of clarity in the criteria for appropriate referral to MCNS. This confusion still exists for some district nurses, who are not sure when the most appropriate time to refer is, or what services can be expected.

It is evident that more information is needed to inform district nurses of the wider role offered by MCNS. The fact that the majority of respondents have shown an interest in palliative care issues by attending courses suggests that district nurses would be receptive to educational initiatives offered by the MCNS.

The nursing care provided by the MCNS is valued and appreciated by district nurses and their patients, but the difficulties associated with the availability, or at least the perception of such difficulties, should be addressed. There is also a need to improve communication links between the MCNS and district nurses throughout the country.

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