A telephone survey of the provision of palliative day care services

Palliative Medicine 1998; 12: 161 170 A telephone survey of the provision of palliative day care services Gina Copp Lecturer in Cancer Care, Centre for Cancer and Palliative Care Studies, Institute of Cancer Research, University of London/Royal Marsden NHS Trust, London, Alison Richardson Clinical Nurse Manager Cancer Services, Bromley Hospitals NHS Trust, Farnborough Hospital, Orpington, Kent, P McDaid Research Assistant, School of Health Care, Oxford Brookes University, Oxford and DA Marshall-Searson Data Manager, Sobell Study Centre, Sir Michael Sobell House, WHO Collaborating Centre for Palliative Cancer Care, Churchill Hospital, Oxford Key words: day care; palliative care; patient questionnaires A telephone survey was conducted to gather preliminary data in order to identify the nature of palliative day care provision in the UK. A random sample of 131 day centres was taken from 17 regional locations in the UK, providing a 60% representation out of a total of 215 adult day care facilities. A combination of a structured and semistructured interview schedule was used to collect the data. The results obtained from this preliminary survey provided further information on the nature, range, and types of services that are currently provided by UK palliative day care centres; management and organizational issues; and the nature of common problems and care issues of patients attending day centres. Data from the study provided further information on the current status of day care services. The implications for future evaluative research are discussed, particularly in the area of the impact and cost-effectiveness of day care services and the potential work with regard to different models of service provision. Mots clés: soins du jour; soins palliatifs; questionnaires des patients Une enquête téléphonique a été réalisée pour réunir des données préliminaires et identifier la nature des soins palliatifs de jour disponibles au Royaume Uni. Un échantillon de 131 centres de jour localisés dans 17 régions différentes du Royaume Uni a été tiré au hasard, représentant 60% du total des 215 hôpitaux de jour pour adultes. Les données ont été recueillies par entretiens à la fois structurés et semistructurés. Les résultats de cette enquête préliminaire donnent des informations plus complètes sur la nature et la gamme des différents services que peuvent offrir actuellement les hôpitaux de jour de soins palliatifs au Royaume Uni; leur gestion et leur organisation; la nature des problèmes et des soins nécessaires les plus communs chez les malades de ces centres de jour. Les données de cette étude actualisent les infomiations sur les services de soins de jour. Les implications pour la recherche sont discutées, notamment celle d une future évaluation de l impact et du rapport coût-efficacité des services de soins de jour et le travail qu il faudrait faire pour tenir compte des différents modèles de services offerts. Address for correspondence: Dr Gina Copp, Lecturer in Cancer Care, Centre for Cancer and Palliative Care Studies, Institute of Cancer Research, University of London/Royal Marsden NHS Trust, London SW3 6JJ, UK. Arnold 1998 0267 6591(98)PM127OA

162 G Copp et al. Introduction During the last two decades, there has been a significant increase in the provision of day care services for patients requiring palliative care in the UK. Since the first palliative care day care unit was established in 1975 in Sheffield, 1,2 the growth in this facility has rapidly increased. Currently, there are approximately 230 day care units in the UK. 3 Clearly, the services provided by day care centres for patients (and their families) are of considerable value, 4 and indeed this particular service has been acknowledged as an integral and vital aspect of palliative care. However, data on the provision of services in this important area of palliative care appear minimal. 5,6 For instance, although the study by Wilkes and colleagues 7 showed that patients using the Sheffield day care unit benefited from support and better symptom control, the specific nature and extent of benefits gained by patients (and their families/carers) using day care services are currently limited and generally anecdotal in nature. 1,8,9 Recently, a small number of studies have been undertaken to gather information on the planning and development of day care services. 10 13 These include: 1) studies on the evaluation of the effectiveness of day hospices in providing palliative care; 10 2) surveys on sources of funding/management of day care centres, qualifications of day care leaders and types of service provided; 11 3) surveys on the development of palliative care services, staffing, number of places provided and number of days when day centres are open. 12,13 Moreover, the types of day care service provision models currently adopted are largely unknown. Preliminary information seems to suggest the utilization of at least two current models of day care, namely medical and social. 6,14 Briefly, the medical model places a strong emphasis on medical input, whereas the social model concentrates more on social activities. However, with the rapid increase in this area of palliative care, combined with the current limited information about this service, it remains unclear whether the different models adopted have different or similar outcomes in meeting the needs of patients and their families. More specifically, although earlier studies have provided some important data on the main functions of palliative day care services, there remains the need to gather further information on the nature of services provided, management and organizational issues, and the nature of common problems and care issues of patients attending palliative day care centres. Such information would complement the work of earlier investigators, and serve as additional baseline data for future evaluative research work on palliative day care service provision as recommended. 5,15 17 The purpose of this study, therefore, was to gather preliminary data in order to identify the nature of palliative day care provision in the UK. It was envisaged that data from the study would provide information on the current status of day care and contribute to future evaluative research on the impact and cost-effectiveness of day care services. Methods Design Descriptive surveys have been suggested as appropriate designs to use when the various characteristics of a particular population are either unknown or only partially known. 18 Since the population characteristics of palliative day care facilities in the UK were broadly unknown, a descriptive survey was conducted from June until September 1997. Telephone interviews were selected as the primary method of data collection for two main reasons. 1) It was considered a practical and useful way to gain a broad coverage of preliminary data, particularly when recruiting participants from a wide geographical area. 2) It was less expensive than conducting face to face interviews with a large sample and in diverse geographical areas. 19,20 Sample The list of day care facilities from the Directory of Hospice and Palliative Care Services 3 was used as the source of sampling for the study. Information on the proposed study was provided to potential respondents at the National Association of Hospice/Palliative Day Care Leaders Annual Conference to raise interest, and hopefully to increase response rates. One of the concerns of using tele-

A telephone survey of the provision of palliative day care services 163 phone surveys is the low response rates. 21 In this study, this problem appears to have been overcome and, indeed, the response rate of 100% of the day centres that were finally sampled not only compares well with other methods, such as face-to-face interviews and postal questionnaires, but is exceptional. Marcus and Crane 22 highlighted that when some kind of initial contact has been made with participants, the response rate is likely to increase. The contact established with the Day Care Leaders, together with their interest and motivation, may have influenced the high response rate in this study. Following this initial contact, a letter introducing the project was mailed to all day care centres in the UK. This was followed by a telephone call to ascertain whether the day care centre would be willing to participate should they be selected during random sampling, and the time when it would be convenient to conduct the telephone interview. 23 All potential participants were given opportunities to consider whether they wished to participate, and time to clarify aspects of the study and interview process. Out of the 230 day care facilities contacted, 215 centres agreed to participate in the telephone survey. Because of time and cost constraints, the final number of day care centres included in the study was decided on practical grounds (the maximum number that could be achieved within the available time of the study). A random sample was, therefore, performed according to the regional location of the day care facility. Thus, out of a total of 215 day care centres, and 17 regional geographical locations (which includes the 14 regions in England and Scotland, Wales and Northern Ireland), 131 day care facilities in the UK were selected for inclusion in the survey. All selected day care centres responded, giving a 60% representation from the total sample. Development and testing of the interview schedule A telephone interview schedule was developed. The interview schedule was comprised of structured and semistructured questions, focusing broadly on the following three main sections: 1) the nature of service provision (e.g. the availability of day centre places, age, types and number of patients, provision of medical/nursing/ other therapies etc.); 2) management and organizational issues (e.g. leadership, types and categories of staff, accessibility and relationship to other medical/allied services, and source of funding); 3) the nature of common problems and care issues of patients attending palliative day care centres (e.g. frequencies of symptoms, general nursing requirements, specific medical treatments provided, psychological and emotional issues). Responses to the questions were elicited in a number of ways. These included the following: yes/ no responses, responses to multiple choice questions using simple rating scales (e.g. never, some of the time, most of the time and all the time) and a limited number of open-ended questions. Pilot interviews with five day care leaders known to the research team were conducted. These were important, in order to test whether the interview schedule could be completed within the maximum time of 20 min. Moreover, the structure and style of the interview were further refined to facilitate coding and encourage a smooth interview process. This is particularly necessary when conducting telephone interviews, as all nonverbal cues are absent. Clarity, and the careful phrasing of questions are, therefore, crucial in order that respondents understand the questions posed. 23 Data collection Data were collected over a period of approximately six weeks. The research assistant used the first two weeks to contact the day care leaders whose centres had been selected to participate in the study. This provided a further opportunity to clarify whether the centre still wished to participate and to answer further questions. All the centres selected agreed to participate and a convenient time was arranged to conduct the telephone interview. Approximately nine to 10 interviews were conducted per day during the four-week period. Each interview was coded on a record sheet and lasted approximately 20 min. Analysis of data Data were collected onto pre-printed questionnaires and entered into a database using a data entry program, specially written in FoxPro 3.0. This allowed for cross-checking of the responses. The data generated was further analysed using FoxPro, MS Excel v7 and Minitab v 9.2.

164 G Copp et al. Table 1 Patient capacity profile of day centres Minimum Maximum Median Total Day centre weekly capacity 6 125 50 6881 Number of days open 1 6 4 514 Number of attendances per day 5 22 14 1352 Number of attendances per week 6 110 40 5443 Results A summary of the data collected on the three main sections is shown below. Nature of service provision (availability of day centre places, types and numbers of patients, age, provision of medical/nursing/other therapies, etc.) Based on a five-day week, the results of the survey showed a capacity in the sample for day centre places of 6881 patients per week (Table 1), which, if projected nationally, would yield approximately 11 000 places. This estimate may be compared with the estimate of 10 000 day care places reported in Eve et al. 12 in the 1994 95 survey of hospice and palliative care in the UK. Twenty-one centres were running at 100% capacity over the five-day week. Another 108 day centres were functioning at 75% capacity, with Monday through to Thursday as the most popular opening days. The majority of day centres were open between three and five days per week; only two centres were open for six days. The overwhelming majority (97%) stated that they treated mostly cancer patients. Thirty-five per cent of centres stated that they were open to treating patients with HIV/AIDS as part of their normal case mix. However, out of this group, only 2% of centres had been directly exposed to treating these patients. Similarly, 69% of centres stated that they would accept referrals of patients with motor neurone disease (MND) as part of their case mix, but again only a small minority (1%) actually treated patients with MND. This result may be compared with the recent study on hospice and palliative care trends 12 which showed that only half of the 186 inpatient units surveyed admitted MND patients, and only a third admitted AIDS patients. It appears that more specific questions involving the actual numbers of day centre patients, would need to be asked in order to clarify these apparent anomalies. In the present study, it seems that very few patients under the age of 40 attend day centres. Patient attendance increased in the age range of 41 60 years and is most frequent in the age range of 61 80 years. The higher ages (80+) are seen less frequently. All of the centres provided social and psychological support for the patients, together with a range of other services. All except seven centres also provide nursing care. Nursing services include performing dressings, bathing, recharging syringe drivers, giving injections, bowel care and providing advice (Figure 1). Seventy of the centres also provide services to the patients carers in the form of access to the day centre in person, and 53 centres kept in touch with carers by telephone (Figure 2). Medical services (Figure 3) include patient assessment (52%), liaison with general practitioners (GPs) (44%), providing advice to patients (22%), as well as prescribing clinical interventions and tests (21%). Moreover, 110 (84%) day centres provided at least one or a combination of complementary therapies. By far the most popular were the hands on therapies, such as aromatherapy, massage and reflexology. Management and organizational issues (e.g. leadership, types and categories of staff, accessibility and relationship to other medical/allied services, and source of funding) One-hundred-and-eighteen (90%) day centres in the survey were headed by a nurse. In most cases, the nurse was Grade E or above, but in a few cases Grade D, Grade B or in one case, Grade A. A total of 214 doctors provided medical cover to the day centres, although 32 centres appeared to operate without the availability of a doctor. Those without doctors included five National Health Service (NHS) funded centres and six combined NHS and independently funded day centres. In the survey, all of the 131 day centres reported the availability of most of the following services:

A telephone survey of the provision of palliative day care services 165 volunteers, chaplains, complementary therapists, physiotherapists, social workers, occupational therapists, chiropodists and dietitians. Only two centres were without volunteer support. In addition, over 70 of the day centres had access to at least one or more of the following facilities: a palliative home care team, chemotherapy, radiotherapy, pathology laboratories, X-ray departments, overnight stay, pain clinics and pharmacy departments. The range of medical and other psychosocial services appeared to be related to the source of funding for individual day centres. For instance, NHS, and combined NHS and independently funded, day centres reported a greater range of services when compared to independently funded centres. Table 2 shows the source of funding for the day centres. Eighty-four (64%) day centres reported that they were independently funded, compared with 26 (20%) NHS funded and 21 (16%) combined NHS and independently funded day centres. An analysis of the attachment of the day centres to specific units such as home care teams and inpatient care, revealed that NHS funded day centres (23%) were more likely to be attached to home care teams than either independently funded (18%) or combined NHS and independently funded day centres (14%). However, there was a higher percentage of independently funded day centres and combined NHS and independently funded day centres (37% and 38%, respectively) that were attached to Figure 1 Ten most frequent nursing services supplied in day centres (n = 131)

166 G Copp et al. Figure 2 Ten most frequent services to carers supplied in day centres (n = 131) inpatient units, compared to those centres that were solely NHS funded (31%). Some centres reported no attachments to either inpatient units or home care teams, whereas there were some that were attached to both. Not surprisingly, centres that were attached to inpatient units were more than twice as likely to offer overnight stays to patients than those without. Nature of common problems and care issues of patients attending palliative day care centres (psychological and emotional issues, frequencies of symptoms, general nursing requirements, specific medical treatments provided) Table 3 shows that all centres dealt with psychological and emotional issues. These include patient anxiety and depression. Over 90% of day centres reported dealing with them on a daily or weekly basis. Ninety centres (69%) reported coming to

A telephone survey of the provision of palliative day care services 167 Figure 3 Ten most frequent medical services supplied in day centres (n = 131) Table 2 Types of day centre according to funding and attachment NHS funding Independent funding NHS and Independent funding Total number of units 26 84 21 Home Care team 6 (23%) 15 (18%) 3 (14%) Inpatient unit 8 (31%) 31 (37%) 8 (38%) Both 9 (35%) 29 (35%) 7 (33%) Neither 3 (12%) 9 (11%) 3 (14%) terms with patients dying as one of the daily or weekly emotional issues experienced. The symptoms of pain, nausea, constipation and dyspnoea were regularly encountered by staff and were reported to occur in combination in the patients attending the day centres. For instance, pain and nausea was the most frequently reported combination (102 centres) followed by pain and dyspnoea (100 centres) and pain and constipation (97 centres). Seventy-six day centres reported a combination of pain, nausea, dyspnoea and constipation. Further research needs to be undertaken to determine the relationship between pain, nausea, constipation and dyspnoea in individual day centre patients. A large majority (over 75%) of the centres, provided nursing services such as bathing, wound dressing, catheter care and bowel care. However, blood transfusion, biphosphonate infusion treatment and drainage of ascites were rarely reported as being provided. Discussion The range of day care services, as shown in the present survey, reveals the use of specialist composite

168 G Copp et al. Table 3 Percentage of common problems and care issues of patients attending palliative day care centres Daily Weekly Monthly Seldom Never Physical symptoms Pain 67 27 5 2 0 Nausea 46 34 16 5 0 Constipation 45 32 13 11 0 Dyspnoea 34 49 16 2 0 Psychological issues Anxiety 81 15 4 1 0 Depression 64 28 8 1 0 Coming to terms with dying 39 30 21 10 1 Confusion 6 29 34 31 1 General nursing needs Bathing 67 14 2 15 3 Wound dressing 25 50 14 9 3 Catheter care 18 30 13 38 2 Bowel care 9 28 11 51 2 Medical treatments Pamidronate treatment 0 5 5 14 77 Blood transfusion 0 2 2 16 81 Drainage 0 0 4 9 88 skills and knowledge. It was interesting to observe not only the range of physical nursing care provided to patients but also to the patients carers, for example, access to the day centre either in person or by telephone. For instance, in addition to nursing services such as wound dressings, bathing and bowel care, there also appears to be a small increase in the trend towards undertaking more technical treatments such as caring for patients who require blood transfusions, syringe drivers and so on (see Table 3). Clearly, only further monitoring of such technical treatments will provide information of whether this trend will continue to increase in day centres. The range of services available to patients carers is particularly interesting. This aspect of nursing activities is often articulated as being provided by nurses in day care, and perceived to be important as part of the philosophical underpinning of most centres. However, the lack of published data makes this service a hidden one. From the perspective of service provision, there is clearly the need to explore the extent of this aspect of nursing work further, particularly in terms of potential cost implications. It seems likely that as the service increases, education, research and development will be required, particularly in preparing staff for an increasingly complex role. For example, day care leaders will need to be more informed in relation to research that provides evaluation of local palliative day care costs and needs. A particularly important area relates to the contribution of volunteers to the service. The preparation of these volunteers, and the particular tasks they undertake, requires further work. The range of medical and psychosocial services provided by the centres appeared to be related to the source of funding of the day centres (i.e. whether NHS, independent or combined NHS and independent). For instance, NHS and combined NHS and independently funded day centres were reported to provide a greater range of medical and other services. Although it may be tempting to associate the presence or absence of medical services as an indicator to determine whether a day centre is perceived as following a medical or social model, further research is required. For example, it is important to explore whether such models exist and, if so, to elicit the different working practices and cultures of these two, or indeed, more models and their impact on patient outcomes. The increase in palliative care day centres will have implications in terms of their contribution and relationship to cancer centres, particularly those that are independently funded. The Calman Hine

A telephone survey of the provision of palliative day care services 169 Report 24 has emphasized the need for palliative care services to develop stronger integration and links with health authorities and purchasers. This survey showed that the majority of day centres are currently independently funded. Information, in terms of the overall status of quality standards and operational policies (e.g. patient referrals), between day centres and their local health authorities and purchasers are currently still limited. It will be useful to know the criteria on which decisions were made regarding the planning and development of new palliative day care centres. The recent introduction of the minimum data sets (MDS) national data collection project 12 will provide useful and important information on the national provision of palliative care services. In conclusion, the present survey has identified some pertinent aspects of the nature of current palliative day care provision in the UK. The data has provided some baseline information on the current status of day care and highlighted a number of areas in which future research would be required. Of particular interest, are evaluative research on the impact and cost-effectiveness of day care services, as well as in-depth studies in order to gain insight and understanding into the complexities and functions of different models of day care centres. However, by its very nature, descriptive data are limited in terms of providing information about organizational complexities. While the data obtained from this survey may be useful in providing broad indications of pertinent day care issues, until in-depth studies are undertaken specifically to explore and compare those issues experienced by individual day centres, the relationship between different models of day care centres and their impact on management, organizational and patient care requirements remain largely unknown. Acknowledgements The authors wish to thank Oxford Brookes University Generic Research Funding, and David Field for comments on the paper. References 1 Thompson B. Hospice day care. Am J Hospice Care 1990; Jan/Feb: 28 29. 2 Twycross R. Palliative care a new specialist development in oncology. IKR Bull 19e Jargang nr.2 1995; 3: 6 9. 3 Directory of Hospice and Palliative Care Services in the United Kingdom and Republic of Ireland. London: St Christopher s Hospice Information Services, 1996. 4 Fisher RA, McDaid P eds. Palliative day care. London: Arnold, 1996. 5 Higginson I. Health care needs assessment: palliative and terminal care. Series 2. DHA Project, Wessex Institute of Public Health Medicine. Oxford: Radcliffe Medical Press, 1995. 6 Higginson I. Clinical audit, evaluations and outcomes. In: Fisher RA, McDaid P eds. Palliative day care. London: Arnold, 1996. 7 Wilkes E, Crowther A, Greaves C. A different kind of day hospital for patients with preterminal cancer and chronic disease. Br Med J 1978; 2: 1053 56. 8 Seely S. Why hospice day care? Am J Hospice Care 1990; Jan/Feb: 16 17. 9 Sharma K, Oliver D, Blatchford G, Higginbottom P. Medical care in hospice day care. J Palliat Care 1993; 9: 42 43. 10 Daniels L, Notter J. Day hospice care through the eyes of the consumer. Paper presented at the 9th International Conference on Cancer Nursing, Brighton, 14 August 1996. 11 New STAS items: sadness/grief and confidence/self worth. In: Webb D ed. STAS Newsletter. London: Palliative Care Research Group, 1994: 6 7. 12 Eve A, Smith AM, Tebbit P. Hospice and palliative care in the UK 1994 95, including a summary of trends 1990 95. Palliat Med 1997; 11: 31 43. 13 Faulkner A, Higginson I, Egerton H, Power M, Sykes N, Wilkes E. Hospice day care: a qualitative study. Trent: Trent Palliative Care Centre, 1993. 14 Eve A, Smith AM. Palliative care services in Britain and Ireland update 1991. Palliat Med 1994; 8: 19 27. 15 Wilkes E. Report of the working party on terminal care. London: Standing Medical Advisory Committee DHSS, 1980. 16 Gotay C. Models of terminal care: a review of the research literature. Clin Invest Med 1983; 6: 131 41. 17 Clark D, Neale B. Independent hospice care in the community: two case studies. Health Soc Care Comm 1994; 2: 203 12. 18 Brink P, Woods M. Advanced design in nursing research. London: Sage Publications, 1989. 19 Barribal K, Christian S, While A, Bergen A. The telephone survey method: a discussion paper. J Cancer Nursing 1996; 24: 115 21. 20 Larrakas P. Telephone survey methods. Sampling, selection and supervision, 2nd edition, vol 7. Applied Social Research Methods Service. London: Sage Publications, 1993.

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