Inf. J. h’urs. Sfud., Vol. 28. No. I. pp. 89-101, Printed in Great Britain.

1991. 0

0020.7489/91 $3.00+0.00 1991 Pergamon Press plc

Nurses caring for the terminally ill in the community: a review of the literature ANN BERGEN Department of Nursing Studies, Kings College, London, Cornwall House Annex, Waterloo Road, London SE1 8TX, U.K.

Abstract-The review considers the literature covering both general district nursing and specialist nursing provision for the terminally ill in the community over the last 10 years in the United Kingdom. It looks at the theoretical and methodological issues associated with research in this area and offers critiques of a number of individual studies in the light of these issues. Research findings are subject to limited comparative analysis and tentative conclusions are drawn regarding the model of care best suited to the needs of those dying at home. Recommendations for future areas of nursing research are made.

Introduction The issue: dying at home and nursing implications Although the proportion of deaths at home accounts for only one third of all adult deaths, and a similar proportion of all cancer deaths (Office of Population Censuses and Surveys, 1980) there has been much debate as to whether this is desirable and whether it is due to patient preferences. A number of health service planning reports over the last lo-15 years have based their policies on the assumption that, given the choice, most patients would prefer to die at home (Kensington and Chelsea and Westminster H.A., 1976; S.E. Thames H.A., 1981; Mid-Surrey H.A., 1987). This assumption has been given some credence by various studies (Reilly and Patten, 1981; Bowling and Cartwright, 1982; Bowling, 1983; Haines and Booroff, 1986; Spilling, 1986), although Taylor (1983) has challenged findings on the grounds of the dearth of quantity and poor quality of the literature. Debate notwithstanding, recent years have seen a proliferation of specialist domiciliary care teams for the terminally ill. Since the establishment of the home care service at St. 89

90

A. BERGEN

Christopher’s Hospice in 1969 (Parkes, 1980) many health authorities and voluntary bodies have set up similar schemes, and by 1983 there existed 93 of these, 40 of which were based in the community (Clench, 1984). Few have been evaluated, other than anecdotally (Lunt and Hillier, 1981). The Royal College of General Practitioners Working Group’s recommendations for a national terminal care policy commented that “terminal care. . . is based, above all, on high quality nursing” (R.C.G.P., 1980), yet Cartwright et al. (1973), in a seminal study of the care of patients dying at home, pointed to certain inadequacies in nursing provision for these people. Other literature of the late 1970s and early 1980s supports this (Kensington and Chelsea and Westminster H.A., 1976; SE. Thames H.A., 1981; Bowling and Cartwright, 1982). Scope of the review In view of these current trends and suggested recent shortcomings in service provision, this review seeks to address the questions: (1) What (and how effective) is the role of the district nurse in caring for the terminally ill? (2) What (and how effective) is the particular contribution of the specialist nurse in terminal care in the community? (3) What model of nursing care best meets the needs of people dying at home?

Literature reviewed has been limited to United Kingdom sources and to the last 10 years, during which time the growth of the terminal care specialism has taken place, with its consequent effect on the role of the genericpractitioner. [The work by Cartwright et al. (1973), mentioned above, although outside the temporal scope, will be referred to, in view of its pioneering nature]. Searches were carried out on four computer databasesDepartment of Health and Social Security (D.H.S.S.), Medline, Nursing and Allied Health Literature and Royal College of Nursing (R.C.N.) (five years only on the latter). In addition, comprehensive reference lists from two related nursing theses were followed up. In view of the small amount of exclusive nursing research found in the area defined, the scope has been extended to include, where relevant: (a) research studies of which nursing services form a part, (b) nursing studies where community care forms a part, (c) studies of multidisciplinary symptom control/continuing care/support teams which include a nursing element. With regard to these and especially to local studies, the review does not claim to be exhaustive, but rather representative. It is hoped that most major pieces of nursing research have been included. No previous review was found which comprehensively analysed the particular questions which were outlined above and which were felt to be crucial for identifying the aims of nursing care and for the planning of future nursing services. Theoretical

and Methodological

Issues

Much of the literature, particularly the earlier work, relating to terminal care in the community, offers little theoretical underpinning, other than an occasional allusion to the concept of the hospice ideal and its expansion into the home setting (Taylor, 1983; Parkes, 1985). Some later works, particularly nursing studies, have sought to embrace and discuss, to some extent, related theories such as that of role and role conflict/ambiguity (Kindlen, 1987; Bunn, 1988). Bunn has also looked at the problem of differentiating the ideal and the reality when describing care. However, the only work found which attempted to make any theoretical statement, and whose methodology reflect this, was Hunt’s (1988) case

COMMLINITY

CARE

FOR THE TERMINALLY

ILL

91

study of nurse communication with terminally ill patients at home, which analysed and categorised the patterns of interaction as a contribution to the creation of an ‘epistemology of practice’. Methodological and ethical issues are less easily ignored, largely due to the sensitive and rather emotive nature of the subject matter. One major problem (which may account for the preponderance of pure descriptive studies on the subject) is the difficulty in finding comparison groups for evaluative studies. Work from the earlier part of the period in question, before specialist teams were well established in many areas could, however, confront the issues head on, by comparing specialist with non-specialist care groups (Parkes, 1980). Others, in line with the Cartwright study of the previous decade, concentrated solely on the non-specialist (Reilly and Patten, 1981), giving subsequent researchers and reviewers a useful baseline. With the growth of specialist teams, this approach became untenable (where they existed, most terminally ill patients were known to them) and possibly unethical (as evidence for the value of specialist care emerged, their services could not be witheld). Comparative studies seem to have shifted to looking at hospice versus home groups (Woodhall, 1986) or hospital versus home groups (Ward, 1987). Another ethical issue which has had an impact on methodology concerns the means of data collection. A number of purely descriptive (and often short) accounts of the nursing role have managed to circumvent this problem through the use of largely quantitative data, such as records and statistics (Bates et al., 1981; Weller, 1981; Doyle, 1982; Curtis and Guerrero, 1984; Smith, 1984a, 1984b; Herxheimer et al., 1985). Parkes (1980) followed the precedent established by the Cartwright study (1973) by attempting to evaluate care as seen through the eyes of surviving spouses, which provided significantly richer data. The largest number of studies have used a methodology based on questionnaires and/or interviews directed at nurses themselves (Bunn, 1988; Kindlen, 1987; MacDonald and Macnair, 1986; Lunt and Yardley, 1986), G.P.s (Haines and Booroff, 1986) or a combination of health professionals and relatives/carers (Reilly and Patten, 1981; Clench, 1984, 1986; Wilkes, 1984; Johnson et al., 1988; Sloan and Grant, 1989). Two fairly recent studies appear to have overcome the apparent ethical reluctance of researchers to visit and assess dying patients themselves in their homes (Ward, 1987; Frank et al., 1987). Both attempted to assess quality of life using the Spitzer Q.L. Index (Spitzer et al., 1981) and thereby provide a first hand, current evaluation of care outcome in relation to professional and lay input. A third issue, and closely related to the foregoing, is the degree of objectivity/subjectivity and bias of the data. Obviously factual details, such as number of nurses, patients and visits can be verified from records and interviews. However, much of the work on the subject in question is either retrospective (after a patient’s death) and/or second-hand (seen through the eyes of a professional or lay carer), giving rise to potential problems related to memory and perception. Polit and Hungler (1987) comment that it should not be taken for granted that respondents will be able to remember events, situations or previous activities and feelings with a high degree of accuracy and that misinformation may distort the results and give rise to bias. Where the events in question relate to the death of a person known to the respondent, this may compound the problem (Wilkes, 1986). Cartwright et al. (1973) had noted that a number of spouses either forgot the district nurse’s visit or were unable to identify her and the two accounts of care (spouse vs district nurse) did not tally. Few studies explicitly address this phenomenon, though Wilkes (1984) did discuss the reliability of data in terms of ‘soft’ and ‘hard’ data and the difference he found in the perceptions of doctors and nurses with regard to patients’ symptoms. Bowling and Cartwright (1982) suggested

92

A. BERGEN

that bias might have crept in at an even earlier stage in their own work; as many spouses were unwilling to be interviewed, their findings may be biased against particularly distressing experiences. Finally, there exists a problem in this area concerning definitions. Although this may be of greater concern to the reviewer, seeking to compare like with like, than to the researcher, it is, nevertheless, a reflection on the integrity of the research project when definititions are inadequate. This is the case with many of the works considered here, particularly in defining terminal illness and care, although, where they are made, operational definitions are often given in terms of a patient’s prognosis being one year or less (Smith, 1984; Frank et al., 1987). More problematical is the variation in the type of nurse under discussion and this is why the reviewer has separated out the generic from the specialist nurse, Even under the specialist umbrella there exists a remarkable diversity, including: those providing some ‘hands on’ care (Weller, 1981; Clench, 1984), those whose role is purely advisory (Smith, 1984; Kindlen, 1987), those who may or may not have their own caseloads (Bunn, 1988), those working as members of a multidisciplinary team (Doyle, 1982) or as an exclusive nursing service (Sloan and Grant, 1989) and, within the same study, those providing hospice as well as home care services and those providing only the latter (Ward, 1987). Some specialists provide night nursing (Marie, 1979) and Johnson et al. (1988) even included ‘sitters’, of some (but undefined) nursing experience within the remit. This variety is largely due to the local nature of most studies but different terminology (specialist nurse, home care nurse, continuing care nurse, symptom control nurse) does not necessarily indicate difference of function. Only one study (Kindlen, 1987) has satisfactorily tackled the whole concept of the specialist nurse in relation to terminal care and, to avoid confusion, this is the term which will be used here. These points, and others, can be illustrated by looking more closely at individual studies. Studies relating to district nurses Reilly and Patten (1981) conducted a study of terminal care given to 118 patients who died at home in an urban area of Greater Belfast following chronic illness. Care, including nursing care, was described by a questionnaire sent to G.P.s concerned and an interview with relatives. Three-quarters of patients received daily nursing input, in many cases twice daily, and nursing care included injections, dressings, enemas, suppositories, skin care, help with turning, advice on self-care and general supervision. A small number of relatives reported difficulty in obtaining sufficient nursing care when needed and were largely unaware of the availability of other services. Most carers wished the patient to remain at home. The authors concluded that district nurses provided good support. There was little complaint from relatives of practical difficulties, but strain was still considerable and problems were mainly psychological. There was discussion of the need for counselling skills and information giving to carers and questioning of the reason for so few home deaths. The study has limitations. The nursing component is only part of a larger study concerned with general service planning for terminal care. The sample, taken from local death certificates within only a 16-week period, may not be represe(ntative. Data were subject to the constraints mentioned above, that is, of a second-hand and retrospective nature and, therefore, of unverifiable accuracy. Response rates were 63.5% for G.P.s (n = 61) and 66% for relatives (n = 78). Nevertheless, carers, as co-receivers with patients of the nursing service, are in a good position to evaluate care and the findings provide useful data to compare with the Cartwright study.

COMMUNITY

CARE

FOR THE TERMINALLY

ILL

93

Using an entirely different approach, MacDonald and Macnair (1986) surveyed district nurses’ perceptions of caring for the terminally ill in Wandsworth H.A. Data collection was by tape-recorded discussions and self-completion questionnaires (not illustrated). Nearly half felt they had time to carry out technical tasks, but not enough time to devote to support and counselling of patients and family. They also felt that many cancer patients were not referred early enough, but expressed a general satisfaction for this type of care, as it used all their nursing skills. Greatest concern was over pain control-an aspect of care shared with G.P.s-and in the need for further specific training. Recommendations included an increase in financial resources for extra staff and the establishment of a team of terminal care nurses. The conclusions are consistent with those of Reilly and Patten, regarding the areas of deficiency in care. However, this represents a very small sample (n = 76, a 70% response rate) and the authors cautioned that no generalizations could be made. In addition, the problem of terminology, outlined above, arises; whereas the patients considered as ‘terminal’ by Reilly and Patten suffered ‘chronic illness’ (i.e. not all suffered from cancer), 81% of district nurses here were identified as caring for ‘cancer patients’ (though not all these were described as terminal). Wilkes’ (1984) study of 262 deaths, though limited to the Sheffield area, can be considered more representative than the above two, to the extent that a random sample, proportional to the national ratio of two hospital deaths to one home death, was taken over a two year period and 32% died from cancer. Once again, nursing, and also community, care, formed only one part of the study, but relevant data can be extrapolated from the results of questionnaires sent to G.P.s, district nurses and caring relatives. Quality of care once again focused on retrospective, self-reported anxieties in carers, as much as patient problems, with three times more relatives of cancer patients reporting distress than those caring for patients with other diseases. Of those seen, 26% of relatives thought the district nurse visited too rarely and many expressed a need for out of hours advice. District nurses felt that the quality of life for 44% of patients was poor or very poor, an indication, perhaps, of their own perceived inadequacies, and 13% caring for cancer patients felt referrals came too late. Again, an increase in community resources was recommended. Studies relating to specialist nurses In studies of specialist nurses in terminal care, definitions, because of the variety, are even more critical if findings are to have any meaning and generalizability. One way of standardizing definitions when seeking to compare studies is to look at types of nurses whose work is (more or less) nationally recognised along the lines of generic district nurses. Such a type is the Macmillan nurse, as defined by Cancer Relief Macmillan Fund (C.R.M.F., 1988) and three such studies are highlighted here. Kindlen (1987) has offered a detailed and comprehensive picture of Macmillan nurses as perceived by themselves, district nurses and health visitors, motivated by a hypothesized discrepancy in these views. Respondents to her questionnaire were drawn from five Health Boards in Scotland- 15 Macmillan nurses, with a proportional, stratified random sample of district nurses (n= 95) and health visitors (n=84) sharing care. The high number of responses (87% district nurses and health visitors and 100% Macmillan nurses) was subject to descriptive analysis. While there was some ignorance, on the part of generic nurses, of the specialist nurse’s role, and some resentment of ‘encroachment’, feelings were generally

94

A. BERGEN

positive. All the Macmillan nurses had been consulted by their generalist colleagues, particularly with regard to advice on symptom control, general support and liaison, and only 5% of the latter felt that, if time permitted, they would rather provide all this type of care themselves. A few also felt that specialists should engage in ‘hands on’ care. Most district nurses felt that Macmillan nurses had a positive influence on the patient’s ability to remain at home. Interestingly, the author has cast doubts on the value of the specialist, suggesting that the Macmillan nurse’s particular expertise may lie in district nursing/health visiting, rather than care of the dying and difficulties encountered may be as much to do with the concept of ‘specialist’ as with the actual work of the Macmillan nurse itself. Kindlen’s work has, perhaps, set the standard in what she describes as “exploratory, descriptive” studies; however, Bunn (1988), in a similar approach, but limited to Macmillan nurses’ views, has also produced a well-designed thesis. Of Bunn’s sample of 60, 15 were community based (the same number as used by Kindlen), though hand-picked from a London locality. Ten aspects of the Macmillan role, gleaned from previous selected indepth interviews, were ranked by the researcher after questionnaire analysis. Stated priorities were seen to be: 1) Symptom monitoring and control. 2) Teaching patients about their illness and helping them cope. 3) Talking with patients about death and dying. 4) Educating other health care professionals. 5) Teaching families about cancer and the care of relatives with cancer. 6) Acting as a resource. 7) Talking with relatives about death and dying. 8) Bereavement counselling. 9) Sorting out social problems. 10) Physical care. These priorities correlated fairly well with the time spent on each activity. Difficulties highlighted include lack of clarity of role perception by selves and others, and difficulties in transition from district nurse to Macmillan nurse, espeically relinquishing ‘hands on’ care (all in her sample thought it important to maintain a caseload, indicating perhaps that the advisory/resource component was not as prominent in practice as theory). There was also strong indication that the Macmillan role is still changing and developing. A third study of Macmillan nurses, this time attempting some external evaluation, almost along action research lines, has been attempted by Sloan and Grant (1989) in North Derbyshire. Questionnaires were sent to bereaved carers (n = 45), G.P.s (n = 183), district nurses (n = 70) and ward sisters (n = 14), though little detail is given regarding selection criteria. It would appear from the information given that the subject matter of the questionnaire was limited in scope and of fixed-answer format, with room for free comments. Although a pilot study was carried out, no details were given of how the instrument was validated; the items purported to reflect patients’ views of nursing care, but a certain ambiguity in interpretation is obvious, and respondents’ (rather than patients’) views are apparently reported. Not surprisingly, perhaps, on a four-point scale ranging from ‘very helpful’ to ‘unhelpful’, most respondents in all categories saw the Macmillan nurse as at least helpful as someone to talk to the patient about cancer. Whether this is what they actually did was not substantiated. Similarly, only 2% of district nurses thought there was ‘no need’ for Macmillan nurses, though the particular qualities valued by those who did see a need were not established. In summary, though the study yields some interesting insights as a by-product in the free comments, it was based on many unspecified

COMMUNITY

CARE

FOR THE TERMINALLY

ILL

95

assumptions and fails to successfully address too many of the methodological difficulties enumerated above for its findings to be of great significance. Literature on the role of non-Macmillan specialist nurses tends to consist of descriptive accounts of local services (Smith, 1984a,b in Brent; Bates, 1981; Curtis and Guerrero, 1984 at St. Thomas’; Weller, 1981; Clench, 1984 in Bath; Herxheimer et al., 1985 at Charing Cross). Type of work carried out largely reflects the findings of Bunn (1988) with differing emphases, and there is much anecdotal evidence of the difficulties in allocating responsibilities in shared care situations. These attempts to identify existing or optimal provision illustrate the regional diversity (Appendix 1). The most detailed of these studies is that of Clench (1984), who also included an evaluative element, via a questionnaire administered to professionals, patients and (bereaved) relatives. The help most appreciated by both patients and relatives was seen in terms of friendship and support, advice and explanation, while most district nurses, 55% of whom made use of the service, thought it should be expanded. A post-mortem on an unsuccessful scheme at Charing Cross Hospital (Herxheimer et al., 1985) suggested its failure lay in the absence of adequate leadership, internal difficulties, inadequate staffing (the workload of the nurse as the only full-time worker was particularly heavy) and insufficient funding. One would like to see a more formal evaluation, despite the methodological difficulties, of some of these schemes. The study by Johnson et al. (1988) of a support scheme for relatives of the terminally ill is interesting for the doubt it casts on the need for specialist training in providing this type of service. Here, paid and voluntary ‘sitters’, with non-specific nursing experience or training, relieved carers as necessary. Eighty per cent of sitters felt their nurse training relevant, although, unfortunately, further training needs were not established. In a postal questionnaire, six weeks after the patient’s death (77% response) over 90% of carers stated the service to have been of some, or great, help. The actual numbers of sitters and carers questioned is not clear, so findings must be interpreted with caution. Sixty per cent of deaths in this group took place at home (32.4% in the general population in Sheffield, where the study took place), but the authors warned against attaching too much importance to this, as figures varied little with the time over which the service operated. Additionally, there was a probable selection bias of respondents in favour of those receiving most visits, and other unrecognized factors may have had an influence (district nurse input, for instance, was not recorded). There was, however, a strong feeling that many referrals came too late. Two studies with contrasting findings stand critical comparison. Taylor (1983) undertook a five month study comprising a literature search, visits to hospices, interviews, a symposium and visits to three home care teams and one symptom control team. The reason for the study was stated to be the need to consider policies in the light of the increase in hospice provision and the resources involved. Unfortunately, the aims of the ‘research’ were somewhat lost in a welter of detail, and methodological rigour was weakened by the author’s prejudgement of the issue. Little detail was given of data collection and analysis, so it is difficult to attach much credence to his conclusion that the specialist domiciliary service “may result in the dilution of hospice care, rather than a qualitative augmentation of it” and that it may therefore be perceived as a poor model. In contrast, Ward (1987) has looked in some detail at the eight home care services for the terminally ill then operating in the Trent and Yorkshire Health Regions. Each nurse was asked to complete a questionnaire and a log of activities pertaining to new patients for one year (or 100 patients, whichever occurred first). In addition, two research field

96

A. BERGEN

workers monitored the progress of one patient from each service in detail and a sample of G.P.s was also sent a questionnaire. Ward commented on the variety of the structure of each service regarding base, direction, structure and caseload. More patients cared for by nurses working from a community rather than a hospice base, died at home, but this was the only consistent element in evaluating differences, and the main benefit recalled by all carers was relief in knowing that support and reassurance were available. The author concluded that no particular structure is more desirable than another, provided there is adequate direction and medical back-up, and that the home care service is not a complete alternative to hospice care but a means by which its benefits may be expanded. This suggests, in contrast to Taylor (1987) and after more focused study, that there is a particular specialist expertise and that its benefits can be extended to the community setting. The question of how representative these localized studies are is one currently being addressed by Lunt and Yardley (1986-ongoing) in their descriptive survey of home care and hospital support teams for the terminally ill in England, Scotland and Wales. The study is ambitious, taking a stratified, random sample from both categories (home care/hospital support) and across geographical areas, of 40 services from the total list of 123 existing in January 1983. Only data on the services in England (collected mainly through nurse interviews, questionnaires and diary notes) has so far been analysed, yielding information on structural characteristics (base, length of existence, funding, staff), working practices (referrals, caseloads, type of work, records) and service objectives. Here, a checklist of degrees of achievement of the objectives, completed by nurses and nurse managers, suggests that, while most see the service as achieving less than its aim, more is being achieved in the community than in the hospital setting. In particular, there appears to be greater provision for direct help than for advice and teaching and comparatively little provision for bereavement and spiritual support. The completed study, while adopting an essentially nursing (rather than consumer) perspective, and assuming an overall representative sample, promises useful findings regarding the advantages and disadvantages of different types of specialist services, and a baseline against which small scale studies may be evaluated. Studies relating to both district nurses and specialist nurses Studies carried out in areas where both district nursing services and specialist nursing teams operate, and are both subject to scrutiny, are probably the most useful in evaluating different models of care. The two types can be externally compared (usually by either recorded data or the opinions of G.P.s and relatives) as opposed to an exclusive focus on one type, or on the opinions of one type about the other. Such studies exist where the specialist service is both well established (Parkes, 1980 and Woodhall, 1986, as attached to St. Christopher’s Hospice and Doyle, 1982, as attached to St. Columba’s Hospice in Edinburgh) and where it is still relatively new (Haines and Booroff, 1986, and Frank et al., 1987, in Brent and Harrow). Doyle’s study (1982) looked at the impact of the specialist (advisory) home care service provided by three nursing sisters with medical back-up on, amongst others, the statutory district nursing service. Records identified 227 patients referred to the service in 1980 and demographic data were analysed. The introduction of the specialist service was seen to increase the district nursing workload by 44% for males and a massive 117% for females. Even so, the proportion of patients being seen by the district nurses when the specialist nurse was called in amounted to only 52% and remained as such. There appeared to be no relationship between the severity of symptoms and the attention of the district nurse

COMMUNITY

CARE

FOR THE TERMINALLY

ILL

91

(many cases of wounds or incontinence, for instance, were not being seen, while those needing minimal care were). Reasons for this inconsistency were not established and it could be suggested they were as much a reluctance on the part of carers to accept help, as to a failure to identify needs. This type of discussion can only be based on guesswork, given the nature of the largely factual data likely to be found in records. As it is, the author was assuming that care was comprehensively and accurately documented and reflected practice. Nevertheless, the fact that over 40% of patients subsequently died at home cannot be denied, whatever the causal influences. Of the two studies of the team based at St. Christopher’s Hospice, that of Parkes (1980) is the more detailed. It consisted in comparing data from interviews with surviving spouses of matched samples of terminally ill patients who were, on the one hand, visited by specialist nurses, and, on the other, by district nurses. Details of the ‘match’ are provided. Focusing first on the 31 spouses of patients visited more than once by the specialist nurse, all stated that they were given an explanation of the illness, advice on caring and most stated that information was given in a sensitive way. Only two said practical care was given by these nurses but 97% thought the comfort of patients improved as a result. Comparing the data on the matched patients, Parkes concluded that the home care service enabled patients to stay at home for longer than they otherwise would have done, but this was not necessarily associated with a tendency to die at home (one could surmise that the reason, in this case, might be the availability of a nearby hospice). Caregivers in both groups reported ‘surprising amounts of unrelieved physical and emotional distress’ (in patients), but the interviewer’s assessment did not indicate many serious failures to meet nursing need in either case. These latter two findings are consistent with previous works cited, but nevertheless seem odd when juxtaposed. It could be queried (as for most of these studies where no copy of the questionnaire is provided) if respondents were asked to identify, or pass judgement on, positive qualities of the service, in a leading way, rather than to indicate inadequacies. Woodhall’s (1986) account compared two groups of 30 patients, all receiving visits from the St. Christopher’s team, but one group dying in the hospice and the other at home. Numbers of district nurse visits to each group were analysed. Insufficient details regarding methodology and sampling were presented for the reader to draw many conclusions. The author’s own were that district nursing input was not significant in influencing admission to the hospice but that “we cannot assume from these results that the district nurse has a diminishing role with the terminally ill, or is reluctant to co-operate and liaise”. Haines and Booroff’s (1986) survey provides a perspective from general practice of terminal care. As part of the study, 196 G.P.s (73% response) from Brent and Harrow were asked if problems they encountered in this field would be helped by more nursing input. Few (fairly predictably) thought neither general nor specialist input would help, whereas 77% thought more general nursing and 82% thought specialist nursing support would be either very helpful or essential. It is not clear which aspects of the service were thought to be most helpful, though problem areas included pain control, incontinence, other symptom control and emotional distress, suggesting both practical and advisory/support services are needed. Although Brent (but not Harrow) had the benefit of a small specialist support team at the time of the Haines survey, Harrow was in the process of establishing one at the time Frank et al. (1987) looked at the needs of the terminally ill in that community. In this case data were collected for the 42 who died within a year. The authors comment on the fact that no reliance can be placed on interpreting results based on such a small sample,

98

A. BERGEN

but point to concern over a small group of people who died in hospital, having expected to go home, but died before facilities were made available. At this time, 28% had a district nurse only in attendance, 6% a specialist nurse only and 34% both, and it was suggested that the appointment of the specialist nurse may have contributed to the number who were, in fact, nursed at home. Discussion The evaluation of, and comparison between, findings of research relating to the nursing care of the terminally ill is made difficult on a number of counts-the regional diversity of provision and structure, the relative novelty of the specialist domiciliary nurse and the different aims and methodologies of the studies, which vary from national surveys (Lunt and Hillier, 1981) to focused ethnomethodological case studies (Hunt, 1988). However, a number of generalizations can be made. The nature of the district nurse’s role can be said to be well established, at least in theory, and she is recognized as the key planner of care (Kindlen, 1987). She carries out any necessary practical nursing care satisfactorily and is well appreciated (Parkes, 1980; Reilly and Patten, 1981; Doyle, 1982). There is some indication that more time to spend with the terminally ill would be desirable (Wilkes, 1984; Haines and Booroff, 1986), especially for counselling MacDonald and Macnair, 1986). There is also evidence of the existence of unmet needs in the community (Bowling and Cartwright, 1982; Woodbine, 1982; Doyle, 1982), notably for psychological support and, in a few cases, difficulty in actually obtaining nursing assistance (Reilly and Patten, 1981). The role of the district nurse does not seem to have diminished since the advent of specialist nurses (Woodhall, 1986). The nature of the specialist nurse’s role is less clear cut. In a few cases, practical nursing is integral (Weller, 1981; Ward, 1987) and, in a few others, marginal (Clench, 1984; Bunn 1988; Kindlen, 1987). In these cases there may exist role conflict or ambiguity, which may be illustrated in the different communication patterns adopted (Hunt, 1988). But the majority of these nurses have a primary advisory/liaison/counselling/resource role (Parkes, 1980; Doyle, 1982; Curtis and Guerrero, 1984; Smith, 1984a,b; Kindlen, 1987; Ward, 1987; Bunn, 1988). This role is generally highly valued by patients (Clench, 1984) and, particularly, carers (Parkes, 1980; Clench, 1984; Ward, 1987; Johnson et al. 1988). It has probably enabled patients to spend a larger portion of their illness at home and/or to die there (Parkes, 1980; Frank et al. 1987; Kindlen, 1987; Ward, 1987; Johnson et al., 1987), though this latter suggestion is more open to dispute, since many other variables may be operative. In addition, length of care, and death, at home, cannot necessarily be taken as indicative of quality of care, unless it is first established that this is the patient’s and relative’s wish, and that care is of a high standard. Earlier referral is often thought to be necessary (Doyle, 1982; Wilkes, 1984; MacDonald and Macnair, 1986; Bunn, 1988; Johnson et al., 1988; Sloan and Grant, 1989). District nurses (and other health professionals) generally value the specialist service, despite the potential conflicts over responsibility for care (Bates et al., 1981; Kindlen, 1987). Some commentators have explicitly or implicitly questioned the value of a specialist provision, either because non-specialists have provided a successful service (Johnson et al., 1988) or because it is felt a hospice-based specialism cannot translate into the community setting (Taylor, 1983), or because the specialist concept in general is not well accepted, and that of terminal care specialist, in particular, is not well delineated (Kindlen, 1987).

COMMUNITY

CARE FOR THE TERMINALLY

ILL

99

There is some degree of consensus in the literature regarding the general model of care which will best meet dying patients’ needs, although emphasis is made throughout, that services must be geared toward local need. No one particular structure would appear to be better than another (Ward, 1987) and no set level of provision has been determined (Lunt and Hillier, 1981). An emphasis on home care is encouraged, with district nurses continuing in the traditional role, with adequate back-up of specialist advisory and medical (including hospice) services (Haines and Booroff, 1986; MacDonald and Macnair, 1986; Twycross, 1986; Mid Surrey H.A., 1987; Johnson et al., 1988). Wilkes (1984) and Herxheimer (1985) call for better integration of general and specialist services within the Primary Health Care Team, and the development of the specialist, with advanced knowledge in her field, is noted by Kindlen (1987) to be in line with Project 2000 proposals (U.K.C.C., 1987). Clench (1984) would seem to sum up current findings when she writes: “the model of clinical nurse specialist, working within the Primary Health Care Team, is the most appropriate one in the long term . . .” Future research As it is difficult to move from the descriptive to the prescriptive in determining the general level and type of care which is desirable, it is suggested that future research be geared toward studies of local need (in line with D.H.S.S., 1986 recommendations) and of services, where they exist (Haines and Booroff, 1986; Kindlen, 1987). The care orientated component of both district nurses’ and specialist nurses’ roles has been well defined in theory and attention needs to be focused on: (1) Further evaluating (despite the methodological difficulties) the extent to which the respective roles exist in reality to provide a quality nursing service and which aspects of the roles are most valued by the patients and carers. (2) Assessing the internal dynamics, communication and leadership of specialist nurses and their relationship with district nurses and Health Care Team. (Kindlen [1987] suggests an investigation of be useful here). (3) Describing and evaluating the teacher role of specialist nurses, carers and professional colleagues.

patterns of individual teams other members of the Primary the ‘key worker’ concept may with regard to both informal

Much of the above could be carried out as part of a Quality possibly within an action research context. Certainly, care of community is an expanding and challenging area of nursing. If of care are to develop in line with need, research must become development.

Assurance Programme, the terminally ill in the standards and provision an integral part of that

References

Bates, T., Hoy, A. M., Clarke, D. G. and Laird, P. P. (1981). The St. Thomas’ Hospital

terminal care support team. Lancet 1, 1201-1202. Bowling, A. and Cartwright, A. (1982). Life after Death-u Study ofthe Elder/y Widowed. lnstitute for Social Studies in Medical Care. Tavistock Publications, London. Bowling, A. (1983). The hospitalisation of death-should more people die at home? .I Med. Ethics 9, 158-161. Bunn, F. (1988). An Exploratory Study of the Role of fhe Macmillan Nurse. BSc project, unpublished. King’s College, London. Calvert, B. (1984). Home from home. Nurs. Times 80, (50) 44. Cancer Relief Macmillan Fund (1988). The Operation and Management of Macmillan Nursing Services. C.R.M.F. Cartwright, A., Hockey, L., Anderson, J. L. (1973). Life before Death. Social Studies in Medical Care. Routledge and Kegan Paul. Clench, P. (1984). Managing to Cure in Community Services for the Terminally Ill. Patten Press, Richmond.

100

A. BERGEN

Clench, P. (1986). The development of home care services in the U.K., in Terminal Cure at Home, Spilling, R. (Ed.) Oxford University Press, Oxford. Curtis, T. and Gaerrero, D. (1984). Support for the terminally ill. Nurs. Mirror Community Forum, 158 (21) viii. D.H.S.S.1N.A.H.A. (1986). Conference on Cure of the Dying. H.M.S.O., London. Doyle, D. (1982). Domiciliary terminal care-demands on statutory services. J. R. CON. Gen. Practitioners 32, 285-291. Frank, A., Fermont, D., Piper, M., Townsend, J., Dyer, S. and Meade, T. (1987). Pilot Prospective Study in the Needs of People Dying of Cancer in N. W. London. M.R.C. Epidemiology and Medical Care Unit, Northwick Park Hospital. Haines, A. and Booroff, A. (1986). Terminal care at home-perspectives from general practice. Br. Med. J. 292, 1051-1053. Herxheimer, A., Begent, R., Maclean, D., Phillips, L., Southcott, B. and Walton, I. (1985). The short life of a terminal care support team-experiences at Charing Cross Hospital. Br. Med. J. 290, 1877-1879. Hunt, M. (1988). Talking to terminally ill patients at home. Nurs. Times 84 (23). 58-59. Johnson, 1. S., Cockburn, M. and Regler, J. (1988). The Marie Curie/St. Luke’s relatives’ support scheme-a home care service for relatives of the terminally ill. J. Adv. Nurs. 13, 565-570. Kensington and Chelsea and Westminster H.A. (1976). Report of the Working Group-Care of the Dying. Kindlen. M. (1987). The Role of the Hospice Home Care Nurse as Perceived by Macmillan Nurses. District Nursing Sisters and Health Visitors fi. Phil thesis, unpublished. University of Edinburgh/R.C.N. Steinberg Collection. Lunt, B. and Hillier, R. (1981). Terminal care-present services and future priorities. Br. Med. J. 283, 595-598. Lunt, B. and Yardley, J. (1986-ongoing). A Survey of Home Care Teams and Hospital Support Teams for the Terminally Ill Cancer Care Research Unit, Royal South Hants Hospital. Unpublished. Marie, H. (1979). Domiciliary night nursing for terminal patients Midwife Hlth Visitor, Community Nurse 15, 152. MacDonald, L. and Macnair, R. (1986). Your views on terminal care. .I. District Nurs. 4 (9) 11-14. of Working Party. Mid-Surrey H.A. (1987). Care of the Dying-Report O.P.C.S. (1980). Mortality Statistics for England and Wales, 1978. H.M.S.O. London. Parkes, C. M. (1980). Terminal care-evaluation of an advisory domiciliary service at St. Christopher’s Hospice. Postgrad. Med. .I. 56, 685-689. Parkes, C. M. (1985). Terminal care-home, hospital or hospice? Lancet 1, 155-157. Polit, D. F. and Hungler, B. P. (1987). Nursing Research-Principles and Methods 3rd Edn. J. B. Lippincott, Philadelphia. Royal College of General Practitioners Working Group (1980). National terminal care policy. J. R. Co/l. Cert. Practitioners 30, 466-47 1. Reilly, P. M. and Patten, M. P. (1981). Terminal care in the home. J. R. CON. Gen. Practitioners 31, 531-537. S.E. Thames H.A. (1981). Terminal Illness and Those in Chronic Pain-a Strategy Document. Sloan, D. and Grant, M. (1989). Evaluating a Macmillan nursing service-the benefits of care. Senior Nurse 9 (5) 20-21. Smith, J. (1984a). Putting nursing into management. Nurs. Mirror 159, 32-34. Smith, J. (1984b). Home is where the heart is. Nurs. Mirror 159, 24-25. Spilling, R. (1986). Dying at home. In TerminalCureat Home, Spilling, R. (Ed.). Oxford University Press, Oxford. Spitzer, W. O., Dobson, A, J., Hall, J., Chesterman, J. L., Shepherd, R., Battista, R. N. and Catchlove, B. R. (1981). Measuring the quality of life of cancer patients. J. Chronic Diseases 34, 585-598. Taylor, H. (1983). The Hospice Movement in Britain-its Role and its Future. Centre for Policy on Ageing in association with Voluntary and Christian Service. Twycross, R. (1986). Symptom control. In Terminal Cure at Home, Spilling, R. (Ed.). Oxford University Press, Oxford. U.K.C.C. (1987). Project 2000 Report-a New Preparation for Practice. Ward, A. (1982). Standards for home care services for the terminally ill. Community Med. 4, 276-279. Ward, A. (1987). Home care services-an alternative to hospices? Community Med. 9, 47-54. Weller, I. (1981). Hospice at home. Nurs. Mirror 153 (25) 36-39. Wilkes, E. (1984). Dying now. Lancer 1, 950-952. Wilkes, E. (1986). Terminal care-how can we do better? J. R. Co/l. Physicians 28, 216-218. Woodbine, G. (1982). The care of patients dying from cancer. J. R. Colt. Gen. Practitioners 32, 685-689. Woodhall, C. (1986). A family concern. Nurs. Times 82, (43) 31-33. (Received 4 December 1989; accepted for publication 12 November 1990)

COMMUNITY

CARE FOR THE TERMINALLY

ILL

101

Appendix Analysis of make-up and work of specialist nursing teams for the terminally ill found in the literature Note: The information given is not comparable. Numbers of nurses form part of a larger team including hospital nurses in some cases. 1) Bates et al. (1981) No. of nurses: 1-3 Visits made: 301_1435/team/year 2) Calvert (1984) No. of nurses: 2 domiciliary Caseload: 1S/nurse 3) Clench (1984) No. of nurses: 6 domiciliary (5.7 W.T.E.) Caseload: 78/W.T.E./year 113/team/year Visits made: 439/team/year Total no. of visits: Ave. 12Ipatient. Duration of care: < 1-52 weeks 4) Curtis and Guerrero (1984) No. of nurses: 3 domiciliary Visits made: Ave. 4/day/nurse Frequency of visits: l/week-2/day 5) Doyle (1982) No. of nurses: 3 No. of new referrals: 227/team/year Total no. of visits: Ave. 33 (m) 53 (f) Duration of care: Ave. 3 months (m) 6 months (f) 6) Johnson et al. (1988) No. of nurses: mean 1.5 W.T.E. (range 0.8-1.8) Caseload: 2.5-23.8/W.T.E. (mean 9.3) No. of new referrals: Ave. 30/quarter/team Total no. of visits: median 2.5/patient (range O-50) 0.5-6 hrs Duration of care: mean 6.7 weeks 7) Kindlen (1987) Caseload: