ht. .I. Nurs. Stud., Vol. 29, No. I, pp. U-94. Printed in Great Britain.
1992. 0
0020.7489/92 $5.00 + 0.00 1992 Pergamon Press plc
Evaluating nursing care of the terminally ill in the community: a case study approach ANN BERGEN,
B.A.,
M.Sc.,
R.G.N.,
Dip. N., D.N. Cert. Lecturer in Nursing Studies, Department of Nursing Studies, King’s College, London, Cornwall House Annex, Waterloo Road, London SE1 STX, U.K.
Abstract-A multiple case study approach was used to evaluate the care of terminally ill people in the community of one Health Authority. Nine patients, and their visiting district and continuing care nurses, were interviewed to determine their different perspectives on need identification and resolution, using the Standard on Care of the Dying as a framework. Data were subjected to content analysis and categorized in relation to theory emerging from the literature. Needs were felt to be generally well met by the nurses, and patients indicated no serious areas of omission. However, a number of recurrent problems and issues were highlighted and recommendations put forward to redress them.
Introduction
and background
Recent years have witnessed a growth in specialist domiciliary care teams for the dying (Hillier, 1988). This trend has been in part a response to the assumption, in health service planning reports, that, given the choice, most terminally ill patients would prefer to die at home (Kensington and Chelsea and Westminster Health Authority, 1976; SE. Thames Health Authority, 1981; Mid-Surrey Health Authority, 1987). But it has also emerged, according to Lamerton (1980), as a reaction to surveys which, in the 1960s and 7Os, revealed much suffering among this group in both hospital and community settings (Exton-Smith, 1961; Cartwright ei al., 1973). However, until the early 198Os, few of these teams and models of care had been evaluated, other than anecdotally (Lunt and Hillier, 1981). The present study aimed to help fill this gap in the literature by exploring the effectiveness of a team of specialist continuing care nurses, working alongside district nursing colleagues 81
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in one Health Authority. Findings were not intended to be generalizable to the community outside the area of study, but the research was, nevertheless, felt to be justified on two counts. Firstly, the existing literature was found to indicate that future research should be geared toward studies of local need and provision (Haines and Booroff, 1986; Kindlen, 1987). Secondly, there was a need, expressed by this particular Health Authority, to evaluate its own service in the context of the District standard setting programme, in view of the funding arrangements for Macmillan (specialist) nurses, between Cancer Relief Macmillan Fund (who sponsor the first three years of a post) and the Health Authority (who take over, subject to satisfactory evaluation).
Objectives
The study objectives were: (i) to establish the extent to which needs-based criteria laid down in the Health Authority Standard on Care of the Dying were satisfied in the view of district nurses. (ii) To establish the extent to which the stated objectives and Standard criteria were satisfied in the view of continuing care nurses. (iii) To establish the extent of the relationship between nursing assessment/intervention and the patient’s perception of his/her need and care.
Definitions
For the purpose of the study, operational definitions were as follows: District nurse-a registered general nurse with an additional district nursing qualification, responsible for assessing needs and planning, implementing and evaluating care for named patients. Continuing care nurse-a registered general nurse with an additional district nursing or health visiting qualification and a specific expertise in care of the dying. Employed by the Health Authority, she may be sponsored by the Cancer Relief Macmillan Fund. Of the three nurses in the participating team, two were Macmillan nurses and the other a Health Authority nurse. All worked in a similar capacity, along the lines of the recommendations of Cancer Relief Macmillan Fund (C.R.M.F., 1988). Terminally ill (patient)-a person with diagnosis of malignant disease, for whom, because the advent of death is forseeable, the emphasis is no longer curative, but palliative in nature (adapted from Taylor, 1983). Nursing standard-a statement made by practitioners of the criteria which must be met in order to provide an agreed level of nursing care. Need-the concept of need, as used in the study embraced the following elements: “diagnostic” need (an identified problem) vs “prescriptive” need (the help required to alleviate it, i.e. met need) (Orr, 1985), “normative” need (need defined in accordance with agreed standards) vs “felt” need (need as perceived by the individual) (Bradshaw, 1972). The setting
The Health Authority which was the focus of the study employed 36 district nurses of sister/charge nurse grade, based at three centres and working under G.P. attachment arrangements. Its specialist (continuing care) provision originated in a Regional Consultative Paper (North West Thames Regional Health Authority, 1987) on a proposed strategy for dying and bereaved people. The underlying philosophy of the paper was that “good care depends on identifying the things that are important to the people involved, and the ability
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to meet their physical, social and psychological needs”. Following a subsequent pilot study (Frank et al., 1987; Townsend et al., 1990), two Macmillan nurses were funded from 1988 to extend the palliative care provision. The continuing care team was community based, each nurse being attached to one of the three district nursing units, which they visited regularly to discuss patient management. In addition, they had a liaison function extending to local hospitals, hospices and day units.
Method-the
case study design
Given the nature of the setting and subject matter, it was decided to base the research on a multiple case study design (Yin, 1989). The stages involved are: (i) reviewing the literature in order to relate the study to previous theory. (ii) Devising a data collection protocol in order to answer the research question and selecting “cases” which can be considered in the context of this theory (the sample). (iii) Conducting the case studies (the procedure). (iv) Writing individual case reports. (v) Comparing individual reports in a crosscase synthesis and developing any policy implications (conclusions and recommendations). These stages were interpreted as follows. The literature review Nursing literature supported the Authority’s assumption, discussed above (N.W.T.R.H.A., 1987), that quality of care may be considered in terms of meeting patients’ needs (Royal College of Nursing, 1989). Therefore, the aim of the literature review was to identify the extent to which district nurses and specialist nurses were meeting the needs of the terminally ill in the community. This would form a theoretical framework within which to conduct the study. The review focused on work relating to district nurses (three studies), specialist nurses (three studies of Macmillan nurses and three studies of nonMacmillan terminal care nurses) and both types of nurses working together (three hospicebased and two community-based studies). From these, findings relating to patient needs and, in some instances, their degree of fulfilment were highlighted (Table 1) as a basis for needs-based data collection. The data collection protocol and research instruments The Care of the Dying Standard (Appendix), developed by the Health Authority under study, was used as a needs-based framework for answering the research question. A standard should state research-based criteria for meeting needs, set at a realistic, rather than idealistic, level, by practitioners (that is, district nurses) (Royal College of Nursing, 1989). It was, therefore, considered appropriate to ask practitioners whether they considered the criteria to be fulfilled and “consumers” (that is, patients) whether they felt their needs were met (Fig. 1). The data collection instruments consisted specifically of three interview schedules (patients, district nurses and continuing care nurses) and a supplementary district nurse/continuing care nurse questionnaire related to standard setting. The nurse interview schedules were based on the nursing standard’s three dimensional structure/process/outcome format, devised by Donabedian (1966). For district nurses, the Standard’s assessment parameters were used to guide questions on the process of nursing, while the continuing care nurse format emphasized the supportive-advisory nature of their role, in relation to similar parameters. It was also based on their role as resource and facilitator to the generalist. Outcome measures for both related to subjective views of care
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Table 1. Summary of findings on community care of the terminally ill Finding documented
Author(s)
District nurses provide good practical care but do not always visit often enough
Reilly and Patten, 1981 Parkes, 1980 Wilkes, 1984
Specialist support teams are recommended
Macdonald and Macnair, 1986 Sloan and Grant, 1989 Clench, 1984 Haines and Booroff, 1986
Patients are often referred too late
Wilkes, 1984 Macdonald and Macnair, 1986
District nurses need counselling skills and time for this aspect of care
Reilly and Patten, 1981 Macdonald and Macnair, 1986 Kindlen. 1987
There exists much concern over: Pain control
Support/teaching/liaison
Macdonald and Macnair, 1986 Haines and Booroff, 1986 Kindlen, 1987 Parkes, 1980 Sloan and Grant, 1989 Clench, 1984 Lunt and Yardley, 1986
Workload of district nurses is increased with presence of specialists, though only 52% of terminally ill patients seen by them
Haines and Booroff, 1986 Doyle, 1982
Medical backup is needed for functioning of specialist teams-they are not an alternative to it
Ward, 1987
District nurses have positive views of specialist nurses, though there is some lack of clarity of role perception
Kindlen, 1987
Carers are under much strain and welcome support
Reilly and Patten, 1981 Parkes, 1980 Wilkes, 1984 Ward, 1987
Patients wish to die at home and nurses can influence this
Reilly and Patten, 1981 Parkes, 1980 Kindlen, 1987 Townsend et al., 1990
There is often little bereavement and spiritual support
Lunt and Yardley, 1986
to date. In practice, and following the literature review, a few additions were made to the Standard criteria in formulating the schedules. These included the need (of nurses) for time (Reilly and Patten, 1981), good referrals (Wilkes, 1984), adequate skills (Macdonald and Macnair, 1986), the importance of support/teaching/liaison work (Sloan and Grant, 1989), need for medical backup (Haines and Booroff, 1986), access to equipment (Owen et al.,
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CCN interview data DN interview I Contribution of CCN in fulfilling, and enabling DN to fulfil, criteria of Standard
DN ability to fulfil criteria of Standard
Validity of Standard
Is the nursing care of terminally ill people c in the community of one Health Authority able to meet patients’ needs?
Fig. 1. The data collection protocol.
1989) and the provision of psychological support (Hitch and Murgatroyd, 1983). The patient interview, with wording suited more to “lay” respondents, maintained essentially the district nurse assessment parameters, while including more specifically “discussion” type topics. The aim was that, although the interview was prefaced by a suggestion that the respondent indicate, for each topic, who it had been discussed with and whether this had helped, the patient-respondent should feel free to explore the issue as (s)he wished. The schedule concluded with an open-ended invitation to comment on other aspects of need and/or care. The schedules were validated using guidelines laid down by Mason (1978), which were found to be similar to the multimethod test for validity put forward by Polit and Hungler (1987) and in keeping with Yin’s suggested tactics for establishing construct validity within the case study, which include the use of multiple sources of evidence (Yin, 1989). The sample
Three patients from each of the three continuing care nurse’s caseloads were recruited, these being distributed across the corresponding caseloads of district nurses from the three
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different units. Each case therefore involved a triple perspective (patient, district nurse, continuing care nurse), giving a total of 27 interviews. The sample of convenience was accessed through a preliminary questionnaire to district nurses, or through information from the continuing care team. In order to be eligible, patients had to be diagnosed as being terminally ill (and aware of this), receiving visits from both a district nurse and continuing care nurse, and deemed able and willing to participate in the study. Procedure Following ethical approval, introductory letters to senior nurse managers and some pilot work, district nurses indicating a willingness to participate, in the preliminary questionnaire, were interviewed. Potential patient interviewees were approached via their district nurses and, if agreeable, interviewed in their homes. All interviews were tape-recorded with permission. A follow-up enquiry was made, via the continuing care team, some three months after data collection was completed, regarding subsequent history of patients participating. Case reports, cross-case analyses and conclusions Transcribed interview data were subjected to content analysis in order to answer questions based on the propositions emerging from the literature. These would also, given the Standard’s validity, answer questions relating to the initial objectives. Structure (resources) and outcome (results) criteria of nurse interviews were classified positively or negatively and qualifying comments noted. Process (actions) data, being more discursive, were subjected to semantic content analysis, where the parameters of nursing assessment (on the Standard) became the categories of response. Additionally, mention of any person associated with the topic was noted and any further comment was classified under the heading of “activities carried out by district nurse/continuing care nurse”. Patient interviews were subjected to the same content analysis regarding categories of care, persons involved and open statements as to the value of care. Results pertaining to the first two objectives were analysed in terms of comparing district nurse and continuing care nurse responses to the structure/outcome criteria and statements relating to perceived role. Data relating to the third question were handled by tabulating the source informant(s) of each topic identified against the corresponding perceived person(s) involved, where mentioned. From this, an estimate of issues identified by the different respondents was calculated along with the person(s) considered most important. Finally, the value statements of all three respondents within each case were compared in order to provide a more qualitative picture of the nature of care. Yin’s recommended analysis technique for the multiple case study concludes with a crosscase analysis from which conclusions may be drawn with implications for theory modification. In the present study this took the form of drawing the findings from the nine cases into a synthesis which included both summary data and discussion regarding interpretation of the data with respect to the research objectives and existing literature. It also integrated the final 3-month follow-up data. Conclusions and recommendations were added as a separate section. Results-case
analyses
Answers to the questions pertaining to the Standard criteria and research objectives were considered in relation to the findings in the literature, across the nine cases. In addition,
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responses from the nurses and the patients were compared in order to assess the extent of agreement in perceptions. These are itemized below and in Table 2 under the separate criteria (structure/process/outcome) and sub-criteria topics. Structure criteria (i) Time-no district nurse identified lack of time as a major constraint to care. This contrasts with the findings of Macdonald and Macnair (1986), though there we have no evidence that other nursing “time” (in terms of specialist nursing) was available to supplement the generalist input. (ii) Staff-in all cases it was thought that the staff visiting were appropriate and reasons given for delegation included the need for expertise and continuity, most sisters appearing to value this type of work. This, again, is consistent with the literature (Macdonald and Macnair, 1986). (iii) Referrals-district nurses felt in four instances, and continuing care nurses in five, that referrals were inadequate, either because they were made too late, or because they contained insufficient information regarding the patient. These were all from either the G.P. or hospital. Inadequate referrals were a feature of the literature reviewed (Wilkes, 1984; Macdonald and Macnair, 1986) although, again, the work pertains to district nurse-only services, and it may be that the presence of specialists, with access to further information in this study, partly offset this. (iv) Knowledge and skill-where district nurses felt criteria were not met, two referred to the need for more counselling (cf. Reilly and Patten, 1981), one wished to know more about pain management and one to know more about Jewish religious practices. Seven thought facilities existed for supplementing knowledge and skills, the most frequently mentioned of these being libraries and the continuing care team, again suggesting that the presence of specialists may compensate for inadequacies felt by district nurses. The continuing care nurses felt generally well equipped to cope knowledge and skill-wise, although twice specialist advice was mentioned as being needed and in another instance the availability of medical skill and peer support were mentioned as prerequisites to a basis for good practice. This agrees with the conclusions of Ward (1987) regarding the need for medical backup. (v) Equipment-in only one instance (case 1) did there appear to be a major problem with aids. Owen et al. (1989) found little recorded evidence of equipment use in their sample and 24% of district nurses felt there existed unmet need here, which contrasts with present findings. In summary, structural criteria were generally adequately fulfilled and, where they were not, it appeared that certain compensatory mechanisms could operate. Process criteria (i) Symptom control and practical care- the physical symptom most frequently identified by patients (all nine) was pain, which every nurse also mentioned. A number of authorities have found considerable concern in this area (Haines and Booroff, 1986; Macdonald and Macnair, 1986; Kindlen, 1987). Other frequently mentioned symptoms (constipation, nausea and vomiting, tiredness, appetite problems, mobility) also appear in the literature (McCorkle and Young, 1978). (ii) Psychological/emotional care and support-most discussion on psychological issues centred on problems related to fear or anxiety surrounding diagnosis or the dying process. Other problems included depression, concern for others, spiritual needs and the death of close relatives. The continuing care nurses tended to be more involved with these issues and the findings largely agree with the literature, in that supportive/advisory work is seen as, next to symptom control, the main area of the Macmillan nurse’s role
_ + + _
-
+
-
_
Referral
Knowledge
Skills
Equipment
4
PT responses: nurse involvement in needs
t
Carer Supported +
+
6
+
+
10
I
+
+
+
+
+
+
6
N/A
+
2 DN CCN
+
+
2
6
+
+
+
+
+
+
6
?
+
+
+
N/A
+
+
-
3
3
?
+
-
_
1
4
N/A
+
+
+
+ +
N/A
+
+
DN
+
_
4
4
N/A
-
+
-
N/A
+
CCN
5
Case number
_
+
CCN
+
DN
4
_
+
3
11
+
+
+
?
+
+
DN
?
+
+
+
N/A
+
CCN
6 -
?
+
3
3
+
N/A
+
+
+
+
DN
-
N/A
+
CCN
+
I
+
-
+
+
DN
+
+
1
6
N/A
?
+
+
N/A
+
CCN
8
N/A
+
+
-
+
+
DN
_
N/A
+
CCN
9
mentioned; N/A = not applicable; DN = district nurse; CCN = continuing care nurse;
3 DN CCN
Key: + = criteria met; - = criteria not met; ? = unsure/not PT = patient.
+
Needs met
Outcome
7
Nurse responses: no. of needs identified 10
N/A
+
Staff
Process
+
_
Time
Structure
1 DN CCN
Table 2. Summary of extent to which criteria were met and degree of nurse involvement
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(Parkes, 1980; Kindlen, 1987; Bunn, 1988). However, all district nurses identified some areas of supportive/advisory work in their role, even if the extent varied. In case 2, for instance, the district nurse had a particularly close relationship with, and good understanding of, her patient, which identified her as the appropriate person to provide for psychological needs. This is shown in the independent interview extracts: Patient: “I’d sooner not know. I try not to get into discussing about my illness or how ill I am. I say to people ‘Don’t ask me how I am, because it only makes me feel I’m ill’. L. (district nurse) understands me. If you don’t ask, I can forget I’m ill.” District nurse: “I never treat her as being ill or dying. I never say ‘How are you?’ or ‘How have things been?‘. She’s fed up of people asking how she is. I just go in, I say ‘Hello’, and then I listen . . my main role is to listen.”
This is not entirely consistent with the findings where little prominence is given to this work by the district nurse (Reilly and Patten, 1981; Macdonald and Macnair, 1986), despite the fact that patients value it as the type of help appreciated most (Clench, 1984). On a more detailed level, “good” interaction patterns, identified by Hunt (1990), can be paralleled in the description given by the continuing care nurses of their own information giving, as shown in case 6: Continuing care nurse: “She gets very down and she’s sometimes striving for reassurance that the things that are happening to her aren’t connected to her cancer. So you can get into a corner because she’s trying to get you to say it’s nothing to worry about and, of course, you can’t say that.”
Some departures from the expected did occur. For instance, the lack of understanding and resentment of the specialist role by the generalist nurse, noted by Kindlen (1987) appeared to be absent. Process criteria in both physical and psychological spheres were, therefore, met to varying degrees by either the district nurse or continuing care nurses or both, with or without additional outside resources. The nature of the most common needs/problems as identified (though not necessarily addressed) by patients and the corresponding nurses are summarized in Table 3. While it cannot be inferred from these figures that the nurses were attributing Table 3. Process criteria: problems most frequently identified Problem Pain Constipation Appetite/diet Tiredness Nausea/vomiting Diagnosis related Mobility/falls Spiritual/religious Swelling Depression/anxiety Death of close relative Sleep Concern for others
Number of times identified by Patients CCNs DNs 9 9 8 8 6 5 5 4 4 3 3 3 1
9 6 5 2 3 2 1 2 2 3 3 2
9 6 3 1 3 2 3 4 2 3 3 1 3
Key: DN = district nurse; CCN = continuing care nurse.
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the problem to those particular patients identifying them (as can be seen from the greater number of nurses than patients identifying “concern for others”) it is interesting that there does seem to be a greater correlation between patient and nurse data in the more obvious, easily recognized symptoms (pain, constipation, etc.) than the more “hidden” ones (tiredness, appetite and sleep problems). Table 2 includes a crude quantitative assessment of the two nurses’ inputs along two measures, that is patient references to nurse involvement/association and nurses’ references to patient needs. For instance, if pain had been mentioned by a patient as being helped by the district nurse’s action and the corresponding district nurse verified this, the issue was documented under (i) nurse responses (as a need identified by the district nurse) and (ii) patient responses (that it was the district nurse who identified the need). It indicates an overall mismatch between nurses’ (greater) and patients’ (lesser) perception of input, suggesting needs were not being well identified and met, although this conclusion must be balanced against other factors such as outside agency and carer support, the qualitative comments and the validity of the interview schedule. Furthermore, overlooked areas may well have been the less obvious ones mentioned above. Finally, two issues emerging, and not considered in the literature explored, concerned problems relating to the G.P. (in four cases) and the major role played by carers other than nurses in relation to certain needs. Outcome criteria (i) Support for carers-carer support was felt to be difficult to provide in all but three cases, usually because carers were out at work, too busy or always present with the patient, making individual contact difficult. The extent of the stress on carers of cancer patients in the community is well documented (Parkes, 1980; Ward, 1987) as well as the frequent failure to relieve this (Reilly and Patten, 1981; Wilkes, 1984). (ii) Preferred place of care and death-the question of whether patients wished to stay at home was difficult to match across the three within-case responses, since patients were not asked the question directly. However, district nurses and continuing care nurses did not disagree in any instance, and only two patients were felt not to want to remain at home. The literature supports these findings, that most patients wish to die at home where this can be arranged (Kindlen, 1987; Townsend et al., 1990). Actual deaths at home, noted at follow-up, numbered three of the five who died (Table 4). The number is too small to draw conclusions from, but suggests a higher than national average (one-third of all deaths according to Wilkes, 1984, and 40% of deaths known to the nursing service in Doyle’s study of 1982). It also supports the conclusion of Townsend’s study (carried out in the same Health Authority) that an increase in community care could enable more patients with cancer to die at home. (iii) Meeting needs-needs were felt to be generally met (seven cases for district nurses and eight cases for continuing care nurses) though with qualifying comments in some instances. The literature is ambivalent here. Wilkes (1984) reported that district nurses’ estimates of patients’ quality of life was generally poor in his study, but this may have been a reflection of the stage of the illness rather than of the extent and success of interventions. Outcome criteria can be said to have been met in the majority of cases. This conclusion is, perhaps, overly dependent on nurse-based data, but the general tenor of patients’ responses to the process criteria does support it. Conclusions
A number of conclusions emerged from the study regarding the meeting of needs in terms
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Table 4. Patient preferences for place of death and situation at 3-month follow-up Patient number
Outcome at follow-up
Place of preference DN perception
CCN perception
PT wish*
home
home
home or hospital
died in hospital
home
home
home
died at home
?home
not sure
not stated
died in hospital
home
home
not stated
died at home
home
not sure
not stated
alive at home
home
home
not stated
died at home
not sure
home or hospice
not stated
alive at home
not home
hospital
not stated
admitted to hospice
hospice
hospice
not stated
admitted to hospice
Key: DN = district nurse; CCN = continuing care nurse; PT = patient. *Patients were not asked this question directly. Patients 1 and 2 volunteered the information.
of fulfilling the Standard criteria and patient feedback. Identified structural criteria, supported in the literature, were usually met. No problems were identified in allocating time and staff or accessing equipment, although referrals in some instances were criticized as being inadequate or too late, and a firmer knowledge base would have been appreciated by some district nurses. However, the continuing care nurses appeared to use these structural limitations to initiate contacts which their position facilitated and thence to feed back to relevant district nurses. The process of nursing similarly used parameters of assessment identified by the literature as being appropriate (with the exception of the omission of psychological/emotional needs as a discrete category). No major omissions in identifying and meeting needs were detected, although less obvious symptoms were often not picked up. Continuing care nurses tended to be more instrumental in psychological support, but care practices could not be generalized and the best examples of needs met were those where the patient was recognized as an individual and care planned accordingly. Outcome criteria, though identified in the literature, were difficult to measure and tended to be nurse orientated. The failure to meet (though not necessarily identify) carers’ needs was a recurring theme. Patients’ wishes regarding place of death seemed to have been discussed in most cases and the post-interview outcome indicated that choice to remain at home was being facilitated where possible (Table 4). Patients with particularly complex needs tested traditional nursing skills, but this was compensated for in some cases by knowledge of other helping agencies to which to refer. With some issues, such as fatigue, it may be that the knowledge base of nursing is not yet sufficiently well developed to offer sound intervention strategies (Piper, 1989). The organizational model for this community care specialty seemed to work well. One of its features, and a possible explanation for why obvious needs were, in fact, largely identified and met, seemed to be the high level of liaison work on the part of the continuing care team with both district nurses and medical specialists and generalists.
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Critique of the method The case study design appeared to serve the subject and its context well. In particular, it obviated the problem of establishing external validity for the small sample, given that generalization was to theoretical propositions, rather than to populations (Yin, 1989). The Care of the Dying Standard provided a useful interview format, but tended to be nurse orientated, with needs normatively defined. Adaptations for the three types of respondents meant that categories were not strictly comparable across the three groups and outcome criteria were difficult to measure and to establish from a consumer viewpoint. Moreover, the Standard’s validity was not established until after data collection took place, since ‘outcome’ criteria formed part of the procedure for its establishment (Mason, 1978). With regard to analysis technique, a problem arose in deciding on a means of rendering the qualitative data meaningful without, at the same time, over-reducing it. The method of choice may have led to slightly misleading results on two counts; firstly, the patient’s mere mention of a person in connection with a need does not necessarily imply that person’s positive influence with regard to meeting it; secondly, there exists the question of whether omission of a certain topic on the patient’s part actually meant no problem/need existed, or whether it had been overlooked or consciously avoided. Recommendations and implications The general conclusion emerging from the study was that the care provided in the Health Authority by district nurses working alongside continuing care nurses in the Primary Health Care Team, with adequate medical backup and channels of communication, was meeting most patients’ needs. Therefore, it is recommended that this model of care be developed, thus supporting the recommendations of Clench (1984). Within this framework, other implications for practice emerged. Firstly, methods of referral could be improved in terms of timing and information giving. Secondly, the assessing and counselling skills of district nurses could be developed to meet the often underestimated psychological needs of the terminally ill. Thirdly, a mechanism needs to be developed to give greater priority to the carers of these patients. And, finally, consideration needs to be given to modifying the Standard on Care of the Dying in the Health Authority, to take account of certain omissions encountered in the literature and through the study. Future research In view of the appropriateness of the multiple case study approach to the subject matter, and the history of such research, future projects based on the design are recommended, in order to advance nursing theory through literal or theoretical replication (Yin, 1989). In particular, similar models of nursing provision should be evaluated in order to test the indication here that a specialist team with a community base and good liaison facilitates quality care. In addition, further attention needs to be given to the carer perspective, in terms of collecting data during the caring experience, rather than retrospectively, and evaluating different nursing interventions. Finally, ways of alleviating ‘hidden’ problems, referred to in the study, especially the common symptom of fatigue, have been particularly under-researched (Piper, 1989) and this situation needs to be redressed. Acknowledgement-To
Bradshaw,
Professor
J. (1972). The concept
Jenifer
Wilson-Barnett
of human
for her comments
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Bunn, F. (1988). An Exploratory Study of the Role of the Macmillan Nurse. BSc. project, unpublished. King’s College, London. Cancer Relief Macmillan Fund (1988). The Operation andManagement of theMacmillan Nursing Service. C.R.M.F. Cartwright, A., Hockey, L. and Anderson, J. L. (1973). Life Before Death. Social Studies in Medical Care. Routledge and Kegan Paul. Clench, P. (1984). Managing to Care in the Community Servicesfor the Terminally Ill. Patten Press, Richmond. Donabedian, A. (1966). Evaluating the quality of medical care. Millbank Memorial Fund Quarterly 44, 166-206. Doyle, D. (1982). Domiciliary terminal care-demands on statutory services. J. R. CON. Gen. Pratt. 32,285-291. Exton-Smith, A. N. (1961). Terminal illness in the aged. Lancet 2, 305. Frank, A., Fermont, D., Piper, M., Townsend, J., Dyer, S. and Meade, T. (1987). Pilot Prospective Study into 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. .I. 29, 1051-1053. Hillier, R. (1988). Palliative medicine-a new specialty. Br. Med. J. 297, 874-875. Hitch, P. J. and Murgatroyd, D. (1983). A delphi survey of hospital nurses. J. Adv. Nurs. 8, 413-422. Hunt, M. (1990). Caring for the terminally ill at home. Nurs. Stand. 4, 23-26. Kensington and Chelsea and Westminster Health Authority (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 Nurses and Health Visitors. M. Phil thesis, unpublished. University of EdinburghIRCN Steinberg collection. Lamerton, R. (1980). Care of the Dying (Rev. edn). Penguin, Harmondsworth. 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). A Survey of Home Care Teams and Hospital Support Teams for the Terminally Ill. C.R.M.F., London. Macdonald, L. and Macnair, R. (1986). Your views on terminal care. J. District Nurs. 4, 1l-13. Mason, E. J. (1978). How to Write Meaningful Nursing Standards. 2nd edn. Wiley, New York. McCorkle, R. and Young, K. (1978). Development of a symptom distress scale. Cancer Nurs. 1, 373-378. Mid-Surrey Health Authority (1987). Care of the Dying-a Report of the Working Party. North West Thames Regional Health Authority (1987). Regional Strategy-Towards a Strategy for Dying and Bereaved People. Orr, J. (1985). Assessing individual and family health needs. In Health Visiting (Luker, K. and Orr, J., Eds). Blackwell, Oxford. Owen, G. M., Crouch, P. and Wadey, A. (1989). Marie Curie Cancer Care-a Study of the Marie Curie Community Nursing Service. The Marie Curie Memorial Foundation, London. Parkes, C. M. (1980). Terminal care-evaluation of an advisory domiciliary service at St. Christopher’s Hospice. Piper, B. F. (1989). Fatigue-current bases for practice. In Key Aspects of Comfort (Funk, S. G., Tournquist, E. M., Champagne, M. T., Copp, L. A. and Weise, R. A., Eds). Springer, New York. Polit, D. F. and Hungler, B. P. (1987). Nursing Research-Principles and Methods. 3rd edn. J. B. Lippincort, Philadelphia. Reilly, P. M. and Patten, M. P. (1981). Terminal care in the home. J. R. Coil. Gen. Pratt. 31, 531-537. Royal College of Nursing (1989). A Framework for Quality. Scutari, Harrow. Sloan, D. and Grant, M. (1989). Evaluating a Macmillan service. Sen. Nurse 9, 20-21. S. E. Thames Health Authority (1981). Terminal Illness and those in Chronic Pain-u Strategy Document. 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. Townsend, J., Frank, A. O., Fermont, D., Dyer, S., Karran, O., Walgrove, A. and Piper, M. (1990). Terminal cancer care and patients’ preference for place of death-a prospective study. Br. Med. J. 301, 415-417. Ward, A. (1987). Home care services-an alternative to hospices? Community Med. 9, 47-54. Wilkes, E. (1984). Dying now. Luncet 1, 950-952. Yin, R. K. (1989). Case Study Research-Design and Methods. Revised edn. Applied Social Research Methods Series No. 5, Sage, Beverly Hills. (Received 23 October 1990; uccepted for publication 17 October 1991)
Access to relevant nursing equipment.
Access to continuing care advisor.
An holistic care plan will be devised by the practising and/or supervising nurse in consultation with the patient and/or carers. The nurse will carry out prescribed nursing care as per individual care plan and evaluate at each visit. The nurse will obtain and use relevant equipment for nursing care. The nurse will refer to appropriate voluntary/statutory agencies. The nurse will help to prepare relatives/carers for bereavement. Record of care will be reviewed at least weekly by the nurse.
A dying patient has a peaceful death. Relatives/carers will report that they have sufficient support for their needs. Nursing records will be signed and dated at least weekly by a nurse.
The patients need for nursing care will be assessed by the practising and/or supervising nurse according to: Pain and symptom control needs Cultural needs Nutritional needs Spiritual needs Continence needs Financial needs Educational needs
The practising and/or supervising nurse will have: Knowledge of the relevant disease and disease process.
Knowledge of voluntary/statutory services available to those who are dying and their families/ carers. Knowledge of referral methods to above.
Outcome
Process
nursing care.
Structure
STANDARD STATEMENT: Every patient in the terminal stages of an illness receives appropriate
THIS STANDARD IS APPLICABLE IN THE FOLLOWING STANDARD REFERENCE NO ............................................. WARD/DEPT AREA: ......................................................... TOPIC CARE OF THE DYING ............................................ SUB-TOPIC ................................................................................................................................................................. CARE GROUP ............................................................................................................................................................. SIGNATURE OF D.N.S. ...................................................... ACHIEVE STANDARD BY .................................................. SIGNATURE OF N.O.G. Representative ................................. REVIEW STANDARD BY .................................................... .......................................................................................... SIGNATURE OF FACILITATOR DATE ............................................................................... OF STANDARDS GROUP ...................................................
Appendix
1992. 0
0020.7489/92 $5.00 + 0.00 1992 Pergamon Press plc
Evaluating nursing care of the terminally ill in the community: a case study approach ANN BERGEN,
B.A.,
M.Sc.,
R.G.N.,
Dip. N., D.N. Cert. Lecturer in Nursing Studies, Department of Nursing Studies, King’s College, London, Cornwall House Annex, Waterloo Road, London SE1 STX, U.K.
Abstract-A multiple case study approach was used to evaluate the care of terminally ill people in the community of one Health Authority. Nine patients, and their visiting district and continuing care nurses, were interviewed to determine their different perspectives on need identification and resolution, using the Standard on Care of the Dying as a framework. Data were subjected to content analysis and categorized in relation to theory emerging from the literature. Needs were felt to be generally well met by the nurses, and patients indicated no serious areas of omission. However, a number of recurrent problems and issues were highlighted and recommendations put forward to redress them.
Introduction
and background
Recent years have witnessed a growth in specialist domiciliary care teams for the dying (Hillier, 1988). This trend has been in part a response to the assumption, in health service planning reports, that, given the choice, most terminally ill patients would prefer to die at home (Kensington and Chelsea and Westminster Health Authority, 1976; SE. Thames Health Authority, 1981; Mid-Surrey Health Authority, 1987). But it has also emerged, according to Lamerton (1980), as a reaction to surveys which, in the 1960s and 7Os, revealed much suffering among this group in both hospital and community settings (Exton-Smith, 1961; Cartwright ei al., 1973). However, until the early 198Os, few of these teams and models of care had been evaluated, other than anecdotally (Lunt and Hillier, 1981). The present study aimed to help fill this gap in the literature by exploring the effectiveness of a team of specialist continuing care nurses, working alongside district nursing colleagues 81
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A. BERGEN
in one Health Authority. Findings were not intended to be generalizable to the community outside the area of study, but the research was, nevertheless, felt to be justified on two counts. Firstly, the existing literature was found to indicate that future research should be geared toward studies of local need and provision (Haines and Booroff, 1986; Kindlen, 1987). Secondly, there was a need, expressed by this particular Health Authority, to evaluate its own service in the context of the District standard setting programme, in view of the funding arrangements for Macmillan (specialist) nurses, between Cancer Relief Macmillan Fund (who sponsor the first three years of a post) and the Health Authority (who take over, subject to satisfactory evaluation).
Objectives
The study objectives were: (i) to establish the extent to which needs-based criteria laid down in the Health Authority Standard on Care of the Dying were satisfied in the view of district nurses. (ii) To establish the extent to which the stated objectives and Standard criteria were satisfied in the view of continuing care nurses. (iii) To establish the extent of the relationship between nursing assessment/intervention and the patient’s perception of his/her need and care.
Definitions
For the purpose of the study, operational definitions were as follows: District nurse-a registered general nurse with an additional district nursing qualification, responsible for assessing needs and planning, implementing and evaluating care for named patients. Continuing care nurse-a registered general nurse with an additional district nursing or health visiting qualification and a specific expertise in care of the dying. Employed by the Health Authority, she may be sponsored by the Cancer Relief Macmillan Fund. Of the three nurses in the participating team, two were Macmillan nurses and the other a Health Authority nurse. All worked in a similar capacity, along the lines of the recommendations of Cancer Relief Macmillan Fund (C.R.M.F., 1988). Terminally ill (patient)-a person with diagnosis of malignant disease, for whom, because the advent of death is forseeable, the emphasis is no longer curative, but palliative in nature (adapted from Taylor, 1983). Nursing standard-a statement made by practitioners of the criteria which must be met in order to provide an agreed level of nursing care. Need-the concept of need, as used in the study embraced the following elements: “diagnostic” need (an identified problem) vs “prescriptive” need (the help required to alleviate it, i.e. met need) (Orr, 1985), “normative” need (need defined in accordance with agreed standards) vs “felt” need (need as perceived by the individual) (Bradshaw, 1972). The setting
The Health Authority which was the focus of the study employed 36 district nurses of sister/charge nurse grade, based at three centres and working under G.P. attachment arrangements. Its specialist (continuing care) provision originated in a Regional Consultative Paper (North West Thames Regional Health Authority, 1987) on a proposed strategy for dying and bereaved people. The underlying philosophy of the paper was that “good care depends on identifying the things that are important to the people involved, and the ability
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to meet their physical, social and psychological needs”. Following a subsequent pilot study (Frank et al., 1987; Townsend et al., 1990), two Macmillan nurses were funded from 1988 to extend the palliative care provision. The continuing care team was community based, each nurse being attached to one of the three district nursing units, which they visited regularly to discuss patient management. In addition, they had a liaison function extending to local hospitals, hospices and day units.
Method-the
case study design
Given the nature of the setting and subject matter, it was decided to base the research on a multiple case study design (Yin, 1989). The stages involved are: (i) reviewing the literature in order to relate the study to previous theory. (ii) Devising a data collection protocol in order to answer the research question and selecting “cases” which can be considered in the context of this theory (the sample). (iii) Conducting the case studies (the procedure). (iv) Writing individual case reports. (v) Comparing individual reports in a crosscase synthesis and developing any policy implications (conclusions and recommendations). These stages were interpreted as follows. The literature review Nursing literature supported the Authority’s assumption, discussed above (N.W.T.R.H.A., 1987), that quality of care may be considered in terms of meeting patients’ needs (Royal College of Nursing, 1989). Therefore, the aim of the literature review was to identify the extent to which district nurses and specialist nurses were meeting the needs of the terminally ill in the community. This would form a theoretical framework within which to conduct the study. The review focused on work relating to district nurses (three studies), specialist nurses (three studies of Macmillan nurses and three studies of nonMacmillan terminal care nurses) and both types of nurses working together (three hospicebased and two community-based studies). From these, findings relating to patient needs and, in some instances, their degree of fulfilment were highlighted (Table 1) as a basis for needs-based data collection. The data collection protocol and research instruments The Care of the Dying Standard (Appendix), developed by the Health Authority under study, was used as a needs-based framework for answering the research question. A standard should state research-based criteria for meeting needs, set at a realistic, rather than idealistic, level, by practitioners (that is, district nurses) (Royal College of Nursing, 1989). It was, therefore, considered appropriate to ask practitioners whether they considered the criteria to be fulfilled and “consumers” (that is, patients) whether they felt their needs were met (Fig. 1). The data collection instruments consisted specifically of three interview schedules (patients, district nurses and continuing care nurses) and a supplementary district nurse/continuing care nurse questionnaire related to standard setting. The nurse interview schedules were based on the nursing standard’s three dimensional structure/process/outcome format, devised by Donabedian (1966). For district nurses, the Standard’s assessment parameters were used to guide questions on the process of nursing, while the continuing care nurse format emphasized the supportive-advisory nature of their role, in relation to similar parameters. It was also based on their role as resource and facilitator to the generalist. Outcome measures for both related to subjective views of care
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Table 1. Summary of findings on community care of the terminally ill Finding documented
Author(s)
District nurses provide good practical care but do not always visit often enough
Reilly and Patten, 1981 Parkes, 1980 Wilkes, 1984
Specialist support teams are recommended
Macdonald and Macnair, 1986 Sloan and Grant, 1989 Clench, 1984 Haines and Booroff, 1986
Patients are often referred too late
Wilkes, 1984 Macdonald and Macnair, 1986
District nurses need counselling skills and time for this aspect of care
Reilly and Patten, 1981 Macdonald and Macnair, 1986 Kindlen. 1987
There exists much concern over: Pain control
Support/teaching/liaison
Macdonald and Macnair, 1986 Haines and Booroff, 1986 Kindlen, 1987 Parkes, 1980 Sloan and Grant, 1989 Clench, 1984 Lunt and Yardley, 1986
Workload of district nurses is increased with presence of specialists, though only 52% of terminally ill patients seen by them
Haines and Booroff, 1986 Doyle, 1982
Medical backup is needed for functioning of specialist teams-they are not an alternative to it
Ward, 1987
District nurses have positive views of specialist nurses, though there is some lack of clarity of role perception
Kindlen, 1987
Carers are under much strain and welcome support
Reilly and Patten, 1981 Parkes, 1980 Wilkes, 1984 Ward, 1987
Patients wish to die at home and nurses can influence this
Reilly and Patten, 1981 Parkes, 1980 Kindlen, 1987 Townsend et al., 1990
There is often little bereavement and spiritual support
Lunt and Yardley, 1986
to date. In practice, and following the literature review, a few additions were made to the Standard criteria in formulating the schedules. These included the need (of nurses) for time (Reilly and Patten, 1981), good referrals (Wilkes, 1984), adequate skills (Macdonald and Macnair, 1986), the importance of support/teaching/liaison work (Sloan and Grant, 1989), need for medical backup (Haines and Booroff, 1986), access to equipment (Owen et al.,
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CCN interview data DN interview I Contribution of CCN in fulfilling, and enabling DN to fulfil, criteria of Standard
DN ability to fulfil criteria of Standard
Validity of Standard
Is the nursing care of terminally ill people c in the community of one Health Authority able to meet patients’ needs?
Fig. 1. The data collection protocol.
1989) and the provision of psychological support (Hitch and Murgatroyd, 1983). The patient interview, with wording suited more to “lay” respondents, maintained essentially the district nurse assessment parameters, while including more specifically “discussion” type topics. The aim was that, although the interview was prefaced by a suggestion that the respondent indicate, for each topic, who it had been discussed with and whether this had helped, the patient-respondent should feel free to explore the issue as (s)he wished. The schedule concluded with an open-ended invitation to comment on other aspects of need and/or care. The schedules were validated using guidelines laid down by Mason (1978), which were found to be similar to the multimethod test for validity put forward by Polit and Hungler (1987) and in keeping with Yin’s suggested tactics for establishing construct validity within the case study, which include the use of multiple sources of evidence (Yin, 1989). The sample
Three patients from each of the three continuing care nurse’s caseloads were recruited, these being distributed across the corresponding caseloads of district nurses from the three
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A. BERGEN
different units. Each case therefore involved a triple perspective (patient, district nurse, continuing care nurse), giving a total of 27 interviews. The sample of convenience was accessed through a preliminary questionnaire to district nurses, or through information from the continuing care team. In order to be eligible, patients had to be diagnosed as being terminally ill (and aware of this), receiving visits from both a district nurse and continuing care nurse, and deemed able and willing to participate in the study. Procedure Following ethical approval, introductory letters to senior nurse managers and some pilot work, district nurses indicating a willingness to participate, in the preliminary questionnaire, were interviewed. Potential patient interviewees were approached via their district nurses and, if agreeable, interviewed in their homes. All interviews were tape-recorded with permission. A follow-up enquiry was made, via the continuing care team, some three months after data collection was completed, regarding subsequent history of patients participating. Case reports, cross-case analyses and conclusions Transcribed interview data were subjected to content analysis in order to answer questions based on the propositions emerging from the literature. These would also, given the Standard’s validity, answer questions relating to the initial objectives. Structure (resources) and outcome (results) criteria of nurse interviews were classified positively or negatively and qualifying comments noted. Process (actions) data, being more discursive, were subjected to semantic content analysis, where the parameters of nursing assessment (on the Standard) became the categories of response. Additionally, mention of any person associated with the topic was noted and any further comment was classified under the heading of “activities carried out by district nurse/continuing care nurse”. Patient interviews were subjected to the same content analysis regarding categories of care, persons involved and open statements as to the value of care. Results pertaining to the first two objectives were analysed in terms of comparing district nurse and continuing care nurse responses to the structure/outcome criteria and statements relating to perceived role. Data relating to the third question were handled by tabulating the source informant(s) of each topic identified against the corresponding perceived person(s) involved, where mentioned. From this, an estimate of issues identified by the different respondents was calculated along with the person(s) considered most important. Finally, the value statements of all three respondents within each case were compared in order to provide a more qualitative picture of the nature of care. Yin’s recommended analysis technique for the multiple case study concludes with a crosscase analysis from which conclusions may be drawn with implications for theory modification. In the present study this took the form of drawing the findings from the nine cases into a synthesis which included both summary data and discussion regarding interpretation of the data with respect to the research objectives and existing literature. It also integrated the final 3-month follow-up data. Conclusions and recommendations were added as a separate section. Results-case
analyses
Answers to the questions pertaining to the Standard criteria and research objectives were considered in relation to the findings in the literature, across the nine cases. In addition,
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responses from the nurses and the patients were compared in order to assess the extent of agreement in perceptions. These are itemized below and in Table 2 under the separate criteria (structure/process/outcome) and sub-criteria topics. Structure criteria (i) Time-no district nurse identified lack of time as a major constraint to care. This contrasts with the findings of Macdonald and Macnair (1986), though there we have no evidence that other nursing “time” (in terms of specialist nursing) was available to supplement the generalist input. (ii) Staff-in all cases it was thought that the staff visiting were appropriate and reasons given for delegation included the need for expertise and continuity, most sisters appearing to value this type of work. This, again, is consistent with the literature (Macdonald and Macnair, 1986). (iii) Referrals-district nurses felt in four instances, and continuing care nurses in five, that referrals were inadequate, either because they were made too late, or because they contained insufficient information regarding the patient. These were all from either the G.P. or hospital. Inadequate referrals were a feature of the literature reviewed (Wilkes, 1984; Macdonald and Macnair, 1986) although, again, the work pertains to district nurse-only services, and it may be that the presence of specialists, with access to further information in this study, partly offset this. (iv) Knowledge and skill-where district nurses felt criteria were not met, two referred to the need for more counselling (cf. Reilly and Patten, 1981), one wished to know more about pain management and one to know more about Jewish religious practices. Seven thought facilities existed for supplementing knowledge and skills, the most frequently mentioned of these being libraries and the continuing care team, again suggesting that the presence of specialists may compensate for inadequacies felt by district nurses. The continuing care nurses felt generally well equipped to cope knowledge and skill-wise, although twice specialist advice was mentioned as being needed and in another instance the availability of medical skill and peer support were mentioned as prerequisites to a basis for good practice. This agrees with the conclusions of Ward (1987) regarding the need for medical backup. (v) Equipment-in only one instance (case 1) did there appear to be a major problem with aids. Owen et al. (1989) found little recorded evidence of equipment use in their sample and 24% of district nurses felt there existed unmet need here, which contrasts with present findings. In summary, structural criteria were generally adequately fulfilled and, where they were not, it appeared that certain compensatory mechanisms could operate. Process criteria (i) Symptom control and practical care- the physical symptom most frequently identified by patients (all nine) was pain, which every nurse also mentioned. A number of authorities have found considerable concern in this area (Haines and Booroff, 1986; Macdonald and Macnair, 1986; Kindlen, 1987). Other frequently mentioned symptoms (constipation, nausea and vomiting, tiredness, appetite problems, mobility) also appear in the literature (McCorkle and Young, 1978). (ii) Psychological/emotional care and support-most discussion on psychological issues centred on problems related to fear or anxiety surrounding diagnosis or the dying process. Other problems included depression, concern for others, spiritual needs and the death of close relatives. The continuing care nurses tended to be more involved with these issues and the findings largely agree with the literature, in that supportive/advisory work is seen as, next to symptom control, the main area of the Macmillan nurse’s role
_ + + _
-
+
-
_
Referral
Knowledge
Skills
Equipment
4
PT responses: nurse involvement in needs
t
Carer Supported +
+
6
+
+
10
I
+
+
+
+
+
+
6
N/A
+
2 DN CCN
+
+
2
6
+
+
+
+
+
+
6
?
+
+
+
N/A
+
+
-
3
3
?
+
-
_
1
4
N/A
+
+
+
+ +
N/A
+
+
DN
+
_
4
4
N/A
-
+
-
N/A
+
CCN
5
Case number
_
+
CCN
+
DN
4
_
+
3
11
+
+
+
?
+
+
DN
?
+
+
+
N/A
+
CCN
6 -
?
+
3
3
+
N/A
+
+
+
+
DN
-
N/A
+
CCN
+
I
+
-
+
+
DN
+
+
1
6
N/A
?
+
+
N/A
+
CCN
8
N/A
+
+
-
+
+
DN
_
N/A
+
CCN
9
mentioned; N/A = not applicable; DN = district nurse; CCN = continuing care nurse;
3 DN CCN
Key: + = criteria met; - = criteria not met; ? = unsure/not PT = patient.
+
Needs met
Outcome
7
Nurse responses: no. of needs identified 10
N/A
+
Staff
Process
+
_
Time
Structure
1 DN CCN
Table 2. Summary of extent to which criteria were met and degree of nurse involvement
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(Parkes, 1980; Kindlen, 1987; Bunn, 1988). However, all district nurses identified some areas of supportive/advisory work in their role, even if the extent varied. In case 2, for instance, the district nurse had a particularly close relationship with, and good understanding of, her patient, which identified her as the appropriate person to provide for psychological needs. This is shown in the independent interview extracts: Patient: “I’d sooner not know. I try not to get into discussing about my illness or how ill I am. I say to people ‘Don’t ask me how I am, because it only makes me feel I’m ill’. L. (district nurse) understands me. If you don’t ask, I can forget I’m ill.” District nurse: “I never treat her as being ill or dying. I never say ‘How are you?’ or ‘How have things been?‘. She’s fed up of people asking how she is. I just go in, I say ‘Hello’, and then I listen . . my main role is to listen.”
This is not entirely consistent with the findings where little prominence is given to this work by the district nurse (Reilly and Patten, 1981; Macdonald and Macnair, 1986), despite the fact that patients value it as the type of help appreciated most (Clench, 1984). On a more detailed level, “good” interaction patterns, identified by Hunt (1990), can be paralleled in the description given by the continuing care nurses of their own information giving, as shown in case 6: Continuing care nurse: “She gets very down and she’s sometimes striving for reassurance that the things that are happening to her aren’t connected to her cancer. So you can get into a corner because she’s trying to get you to say it’s nothing to worry about and, of course, you can’t say that.”
Some departures from the expected did occur. For instance, the lack of understanding and resentment of the specialist role by the generalist nurse, noted by Kindlen (1987) appeared to be absent. Process criteria in both physical and psychological spheres were, therefore, met to varying degrees by either the district nurse or continuing care nurses or both, with or without additional outside resources. The nature of the most common needs/problems as identified (though not necessarily addressed) by patients and the corresponding nurses are summarized in Table 3. While it cannot be inferred from these figures that the nurses were attributing Table 3. Process criteria: problems most frequently identified Problem Pain Constipation Appetite/diet Tiredness Nausea/vomiting Diagnosis related Mobility/falls Spiritual/religious Swelling Depression/anxiety Death of close relative Sleep Concern for others
Number of times identified by Patients CCNs DNs 9 9 8 8 6 5 5 4 4 3 3 3 1
9 6 5 2 3 2 1 2 2 3 3 2
9 6 3 1 3 2 3 4 2 3 3 1 3
Key: DN = district nurse; CCN = continuing care nurse.
90
A. BERGEN
the problem to those particular patients identifying them (as can be seen from the greater number of nurses than patients identifying “concern for others”) it is interesting that there does seem to be a greater correlation between patient and nurse data in the more obvious, easily recognized symptoms (pain, constipation, etc.) than the more “hidden” ones (tiredness, appetite and sleep problems). Table 2 includes a crude quantitative assessment of the two nurses’ inputs along two measures, that is patient references to nurse involvement/association and nurses’ references to patient needs. For instance, if pain had been mentioned by a patient as being helped by the district nurse’s action and the corresponding district nurse verified this, the issue was documented under (i) nurse responses (as a need identified by the district nurse) and (ii) patient responses (that it was the district nurse who identified the need). It indicates an overall mismatch between nurses’ (greater) and patients’ (lesser) perception of input, suggesting needs were not being well identified and met, although this conclusion must be balanced against other factors such as outside agency and carer support, the qualitative comments and the validity of the interview schedule. Furthermore, overlooked areas may well have been the less obvious ones mentioned above. Finally, two issues emerging, and not considered in the literature explored, concerned problems relating to the G.P. (in four cases) and the major role played by carers other than nurses in relation to certain needs. Outcome criteria (i) Support for carers-carer support was felt to be difficult to provide in all but three cases, usually because carers were out at work, too busy or always present with the patient, making individual contact difficult. The extent of the stress on carers of cancer patients in the community is well documented (Parkes, 1980; Ward, 1987) as well as the frequent failure to relieve this (Reilly and Patten, 1981; Wilkes, 1984). (ii) Preferred place of care and death-the question of whether patients wished to stay at home was difficult to match across the three within-case responses, since patients were not asked the question directly. However, district nurses and continuing care nurses did not disagree in any instance, and only two patients were felt not to want to remain at home. The literature supports these findings, that most patients wish to die at home where this can be arranged (Kindlen, 1987; Townsend et al., 1990). Actual deaths at home, noted at follow-up, numbered three of the five who died (Table 4). The number is too small to draw conclusions from, but suggests a higher than national average (one-third of all deaths according to Wilkes, 1984, and 40% of deaths known to the nursing service in Doyle’s study of 1982). It also supports the conclusion of Townsend’s study (carried out in the same Health Authority) that an increase in community care could enable more patients with cancer to die at home. (iii) Meeting needs-needs were felt to be generally met (seven cases for district nurses and eight cases for continuing care nurses) though with qualifying comments in some instances. The literature is ambivalent here. Wilkes (1984) reported that district nurses’ estimates of patients’ quality of life was generally poor in his study, but this may have been a reflection of the stage of the illness rather than of the extent and success of interventions. Outcome criteria can be said to have been met in the majority of cases. This conclusion is, perhaps, overly dependent on nurse-based data, but the general tenor of patients’ responses to the process criteria does support it. Conclusions
A number of conclusions emerged from the study regarding the meeting of needs in terms
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Table 4. Patient preferences for place of death and situation at 3-month follow-up Patient number
Outcome at follow-up
Place of preference DN perception
CCN perception
PT wish*
home
home
home or hospital
died in hospital
home
home
home
died at home
?home
not sure
not stated
died in hospital
home
home
not stated
died at home
home
not sure
not stated
alive at home
home
home
not stated
died at home
not sure
home or hospice
not stated
alive at home
not home
hospital
not stated
admitted to hospice
hospice
hospice
not stated
admitted to hospice
Key: DN = district nurse; CCN = continuing care nurse; PT = patient. *Patients were not asked this question directly. Patients 1 and 2 volunteered the information.
of fulfilling the Standard criteria and patient feedback. Identified structural criteria, supported in the literature, were usually met. No problems were identified in allocating time and staff or accessing equipment, although referrals in some instances were criticized as being inadequate or too late, and a firmer knowledge base would have been appreciated by some district nurses. However, the continuing care nurses appeared to use these structural limitations to initiate contacts which their position facilitated and thence to feed back to relevant district nurses. The process of nursing similarly used parameters of assessment identified by the literature as being appropriate (with the exception of the omission of psychological/emotional needs as a discrete category). No major omissions in identifying and meeting needs were detected, although less obvious symptoms were often not picked up. Continuing care nurses tended to be more instrumental in psychological support, but care practices could not be generalized and the best examples of needs met were those where the patient was recognized as an individual and care planned accordingly. Outcome criteria, though identified in the literature, were difficult to measure and tended to be nurse orientated. The failure to meet (though not necessarily identify) carers’ needs was a recurring theme. Patients’ wishes regarding place of death seemed to have been discussed in most cases and the post-interview outcome indicated that choice to remain at home was being facilitated where possible (Table 4). Patients with particularly complex needs tested traditional nursing skills, but this was compensated for in some cases by knowledge of other helping agencies to which to refer. With some issues, such as fatigue, it may be that the knowledge base of nursing is not yet sufficiently well developed to offer sound intervention strategies (Piper, 1989). The organizational model for this community care specialty seemed to work well. One of its features, and a possible explanation for why obvious needs were, in fact, largely identified and met, seemed to be the high level of liaison work on the part of the continuing care team with both district nurses and medical specialists and generalists.
92
A. BERGEN
Critique of the method The case study design appeared to serve the subject and its context well. In particular, it obviated the problem of establishing external validity for the small sample, given that generalization was to theoretical propositions, rather than to populations (Yin, 1989). The Care of the Dying Standard provided a useful interview format, but tended to be nurse orientated, with needs normatively defined. Adaptations for the three types of respondents meant that categories were not strictly comparable across the three groups and outcome criteria were difficult to measure and to establish from a consumer viewpoint. Moreover, the Standard’s validity was not established until after data collection took place, since ‘outcome’ criteria formed part of the procedure for its establishment (Mason, 1978). With regard to analysis technique, a problem arose in deciding on a means of rendering the qualitative data meaningful without, at the same time, over-reducing it. The method of choice may have led to slightly misleading results on two counts; firstly, the patient’s mere mention of a person in connection with a need does not necessarily imply that person’s positive influence with regard to meeting it; secondly, there exists the question of whether omission of a certain topic on the patient’s part actually meant no problem/need existed, or whether it had been overlooked or consciously avoided. Recommendations and implications The general conclusion emerging from the study was that the care provided in the Health Authority by district nurses working alongside continuing care nurses in the Primary Health Care Team, with adequate medical backup and channels of communication, was meeting most patients’ needs. Therefore, it is recommended that this model of care be developed, thus supporting the recommendations of Clench (1984). Within this framework, other implications for practice emerged. Firstly, methods of referral could be improved in terms of timing and information giving. Secondly, the assessing and counselling skills of district nurses could be developed to meet the often underestimated psychological needs of the terminally ill. Thirdly, a mechanism needs to be developed to give greater priority to the carers of these patients. And, finally, consideration needs to be given to modifying the Standard on Care of the Dying in the Health Authority, to take account of certain omissions encountered in the literature and through the study. Future research In view of the appropriateness of the multiple case study approach to the subject matter, and the history of such research, future projects based on the design are recommended, in order to advance nursing theory through literal or theoretical replication (Yin, 1989). In particular, similar models of nursing provision should be evaluated in order to test the indication here that a specialist team with a community base and good liaison facilitates quality care. In addition, further attention needs to be given to the carer perspective, in terms of collecting data during the caring experience, rather than retrospectively, and evaluating different nursing interventions. Finally, ways of alleviating ‘hidden’ problems, referred to in the study, especially the common symptom of fatigue, have been particularly under-researched (Piper, 1989) and this situation needs to be redressed. Acknowledgement-To
Bradshaw,
Professor
J. (1972). The concept
Jenifer
Wilson-Barnett
of human
for her comments
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Access to relevant nursing equipment.
Access to continuing care advisor.
An holistic care plan will be devised by the practising and/or supervising nurse in consultation with the patient and/or carers. The nurse will carry out prescribed nursing care as per individual care plan and evaluate at each visit. The nurse will obtain and use relevant equipment for nursing care. The nurse will refer to appropriate voluntary/statutory agencies. The nurse will help to prepare relatives/carers for bereavement. Record of care will be reviewed at least weekly by the nurse.
A dying patient has a peaceful death. Relatives/carers will report that they have sufficient support for their needs. Nursing records will be signed and dated at least weekly by a nurse.
The patients need for nursing care will be assessed by the practising and/or supervising nurse according to: Pain and symptom control needs Cultural needs Nutritional needs Spiritual needs Continence needs Financial needs Educational needs
The practising and/or supervising nurse will have: Knowledge of the relevant disease and disease process.
Knowledge of voluntary/statutory services available to those who are dying and their families/ carers. Knowledge of referral methods to above.
Outcome
Process
nursing care.
Structure
STANDARD STATEMENT: Every patient in the terminal stages of an illness receives appropriate
THIS STANDARD IS APPLICABLE IN THE FOLLOWING STANDARD REFERENCE NO ............................................. WARD/DEPT AREA: ......................................................... TOPIC CARE OF THE DYING ............................................ SUB-TOPIC ................................................................................................................................................................. CARE GROUP ............................................................................................................................................................. SIGNATURE OF D.N.S. ...................................................... ACHIEVE STANDARD BY .................................................. SIGNATURE OF N.O.G. Representative ................................. REVIEW STANDARD BY .................................................... .......................................................................................... SIGNATURE OF FACILITATOR DATE ............................................................................... OF STANDARDS GROUP ...................................................
Appendix
