Palliative Care Consultation in The Netherlands: A Nationwide Evaluation Study

Vol. 27 No. 1 January 2004 Journal of Pain and Symptom Management 53 Original Article Palliative Care Consultation in The Netherlands: A Nationwide Evaluation Study Annemieke Kuin, PhD, Annemie M. Courtens, PhD, Luc Deliens, PhD, Myrra J.F.J. Vernooij-Dassen, PhD, Lia van Zuylen, MD, PhD, Barbara van der Linden, MD, PhD, and Gerrit van der Wal, MD, PhD Institute for Research in Extramural Medicine (A.K., L.D., G.v.d.W.), VU University Medical Center, Amsterdam, The Netherlands; Department of Transmural Care (A.M.C.), University Hospital Maastricht, Maastricht, The Netherlands; Department of Medical Sociology and Health Sciences (L.D.), Vrije Universiteit Brussels, Brussels, Belgium; Center for Quality of Care Research (M.J.F.J.V.-D.), University Medical Center St. Radboud, Nijmegen, The Netherlands; Department of Medical Oncology (L.v.Z.), Erasmus MC-Daniel den Hoed Cancer Center, Rotterdam, The Netherlands; and Julius Center for General Practice and Patient Oriented Research (B.v.d.L.), University Medical Center Utrecht, Utrecht, The Netherlands Abstract Palliative care in The Netherlands is mainly provided by generalist professionals who are part of the regular health care system. In order to provide good quality palliative care, they need options for training and consultation. Therefore, Palliative Care Consultation (PCC) teams were established, which inform, support, and advise professional caregivers involved with patients in palliative care without taking over responsibility. This study is the first nationwide study on PCC teams. Investigated was the nature and effect of consultations by registration and evaluation of consultations given by 19 PCC teams during a one-year period. Sixty-one percent of the requesting caregivers were primary care professionals and the problems discussed covered the entire field of palliative care, although physical problems played a dominant role. Although the patient was often not seen by the consultant, the consultant appeared to be able to identify more problems than initially discussed by the requesting professional. The types of problems discussed were hardly related to patient characteristics but more related to the discipline of the professional caregiver. According to the requesting professionals, consultation was helpful and contributed to improving the quality of palliative care. J Pain Symptom Manage 2004;27:53 60. 2004 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words Palliative care, consultation teams, support and advice, patient characteristics, evaluation, primary health care Address reprint requests to: Gerrit van der Wal, MD, PhD, Institute for Research in Extramural Medicine, Department of Social Medicine, VU University Medical Center, Van der Boechorststraat 7, 1081 BT Amsterdam, The Netherlands. Accepted for publication: June 2, 2003. 2004 U.S. Cancer Pain Relief Committee Published by Elsevier Inc. All rights reserved. Introduction The complex care for terminally ill patients covers a wide range of physical, psychological, social, and spiritual problems, and often requires extensive organization and coordination. Worldwide, specialist palliative care services have been developed to improve the 0885-3924/04/$ see front matter doi:10.1016/j.jpainsymman.2003.06.001

54 Kuin et al. Vol. 27 No. 1 January 2004 quality of care provided for terminally ill patients. 1 3 In addition, palliative care consultation teams aim to improve the quality of palliative care and enhance the expertise by advising professionals in hospitals 4 6 or home care 7,8 confronted with patients in palliative care. In The Netherlands, health care is characterized by its strong emphasis on primary care, and there is a consensus that palliative care should be provided in the patient s home if possible. 9 The aging population and the growing number of deaths from cancer are expected to increase the contribution from primary care professionals to meet the rising levels of need for palliative care. 10,11 In order to provide good quality palliative care, the Dutch government developed a policy to support and enhance the expertise of the primary care professionals involved. In 1998, a national palliative care program was launched to stimulate education and research in palliative care as well as the development of local Palliative Care Consultation teams (PCC teams). The first PCC team was established in 1997, and by March 2002 there were 20 PCC teams covering two-thirds of the country. The PCC teams can be consulted by all professionals involved in palliative care by phone and, on request, the patient can be visited by the consultant. The primary consultants of the PCC teams are nurses from specialized home care teams, hospices, or oncology departments, general practitioners, nursing home physicians, or medical specialists (oncologists, radiotherapists, and anesthesiologists), all with extra expertise and training in palliative care. They are supported by a multidisciplinary team of medical and non-medical professionals (e.g., medical specialists, psychologists, social and spiritual workers, pharmacists, physiotherapists) with specific experience in palliative care. The main aim of the PCC teams in The Netherlands is not to take over the responsibility of care, but to inform, support, and advise the primary professional caregivers. This is the first nationwide study of palliative care consultation, based on registration and evaluation of consultations given by 19 PCC teams in a one-year period. The aim was to investigate the type of problems PCC teams deal with, the relation between the problems discussed and patient characteristics or the discipline of the requesting professional, the value of the exploration of the request by the consultant, and the type of recommendations made. The effect of the palliative care consultation has been evaluated from the perspective of the requesting caregivers. Methods In the period from March 1, 2001 to March 1, 2002, 19 of the20 PCC teamsin The Netherlands participated in this study by systematically registering their palliative care consultations. The PCC teams could be reached by phone. After investigating the situation with the requesting caregiver, the consultant either answered the questions immediately or discussed the identified problems with other members of the multidisciplinary PCC team before recommendations were made. The consultation was not necessarily restricted to one contact. For some consultations several contacts were desired to address complex problems or follow up the effect of advice given. The policy of most PCC teams was that, in complex situations, the patient could be visited by the consultant at the request of the caregiver. Each consultation was registered on a standard registration form developed by a multidisciplinary group of researchers, based on previous pilot studies involving the different PCC teams. The form contained questions about the discipline of the requesting caregiver and the characteristics of the patient involved (sex, age, place of care, informal care, diagnoses, prognosis, and performance status [Eastern Cooperative Oncology Group scale]). Furthermore, the questions that were initially asked by the caregiver (initial questions), all problems identified during the consultant s investigation (identified problems), recommendations made, and features of the consultation process were documented by the consultant. Participating researchers in 5 regions were responsible for checking the registration and they found that only a few general questions had not been registered. To prevent selective non-response, missing items were systematically checked with the consultant, often within two weeks after consultation, and, if possible, the form was completed. Two weeks after a consultation, a short questionnaire was mailed to the requesting caregiver to evaluate the perceived

Vol. 27 No. 1 January 2004 Palliative Care Consultation in The Netherlands 55 effect of the consultation. To reduce response bias, the evaluation questionnaire could be returned anonymously to the researchers and it was clearly stated that consultants did not have access to individual responses. Data from both forms were entered into a Microsoft Access database, double checked, and converted into an SPSS data file for analysis. Statistics Descriptive statistics were calculated with 95% confidence intervals (CI) for proportions. Comparison of means was performed by twotailed t-test, and P values 0.05 were considered to be significant. Differences between requesting caregivers and patient characteristics in the problem categories discussed were compared by means of χ 2 tests. Because 11 variables across the same study groups were analyzed, the Bonferroni correction was applied, adjusting the P value for significance to P 0.0045. Results In the one-year research period, 2,040 consultations via the telephone, at the patient s bedside, or in face-to-face contact with the requesting caregiver were registered. Consultations were requested mainly by physicians (66%) and nurses (22%), 61% of whom worked in primary care (Table 1). Table 1 Caregivers Requesting Palliative Care Consultation (n 2,040) Discipline % Physician 66.0 General practitioner a 52.2 Clinical specialist 11.6 Nursing home physician 2.2 Nurse 22.4 Hospital 9.1 District a 7.5 Hospice 2.4 Home for the elderly a 1.2 Nursing home 0.4 Unknown working place 2.1 Other b 11.6 a Primary care professionals. b e.g., informal caregivers, pharmacists, and a diverse group of students, managers and policy advisors in care services asking for general information. Although most consultations concerned questions about patients, some concerned general questions (Tables 2 and 3). In the initial contact the requesting caregiver asked an average of 1.3 and 2.1 initial questions in general and patient-related consultation, respectively. The number of problems identified after further investigation by the consultant was significantly higher compared to the initial questions for all types of consultations, in particular for bedside consultation (Table 2). The patients who were the subject of the consultation were mainly diagnosed with cancer and had a prognosis of less than 6 months. They often had a low performance status and were predominantly cared for at home (Table 4). The problems discussed in the consultations covered the entire range of palliative care problems, and were divided into 11 main categories (Table 5). Physical problems played a dominant role in palliative care consultations, and on average, 2.5 physical symptoms (range 0 14) were discussed in the patient-related consultations. In addition to problems concerning patients, in 18% of the consultations problems experienced by the requesting caregiver were discussed. Statistical analysis of problem categories in patient-related telephone consultations demonstrated that, in comparison to district nurses, general practitioners (GPs) more frequently requested consultation for physical and pharmacological problems, and less often for problems regarding organization of care (Figure 1). No significant differences were found between physicians and nurses in hospitals and nursing homes for the 11 problem categories. However, compared to GPs and district nurses these physicians and nurses more often discussed social and spiritual problems, problems with daily functioning, and problems regarding the organization of care or informal caregivers. Patient characteristics, such as sex, age, informal care, place of care, and performance status, did not influence the frequency of the problem categories discussed. With regard to patients with cancer compared to non-cancer diagnoses, significant differences were observed for physical symptoms (81% vs. 65%), organization of care (28% vs. 40%), and daily functioning (4% vs. 13%). Consultations about patients with a prognosis of less than 1 week, concerned more often pharmacological (54% vs. 37%) and psychological problems (34% vs. 24%) and

56 Kuin et al. Vol. 27 No. 1 January 2004 Table 2 Type and Number of Palliative Care Consultations in The Netherlands in a One-Year Period (n 2,040) a Number of Consultations Number of Initial Number of Identified Questions/Consultation Problems/Consultation n % (95% CI) mean (SD) mean (SD) Patient-related consultation 1,773 87.5 (86.0 88.9) 2.1 (1.7) b 4.7 (4.8) b,c Telephone 1,211 59.7 (57.6 61.9) 2.0 (1.5) 3.9 (3.7) Bedside 450 22.2 (20.4 24.0) 2.5 (2.2) 7.2 (6.3) d Other e 112 5.5 (4.6 6.6) 2.2 (1.9) 4.1 (4.1) General questions 254 12.5 (11.1 14.0) 1.3 (0.7) 1.7 (1.6) Telephone 245 12.0 (10.7 13.5) 1.3 (0.7) 1.7 (1.6) Other e 9 0.4 (0.2 0.8) 2.3 (1.0) 2.6 (0.7) a March 1, 2001 March 1, 2002, including 13 missing. b Significantly different from general questions (t-test; P 0.05). c For all types of consultations the numbers of identified problems were significantly different from the numbers of initial questions (t-test; P 0.05; other general questions not tested). d Significantly different from telephone and other patient-related consultations (t-test; P 0.05). e Other concerns face-to-face contact with the requesting caregiver and consultation in peer groups. less often social problems (3% vs. 9%) compared to consultations about patients with a longer prognosis. Table 6 demonstrates that for pharmacological, physical, and psychological problems, mainly pharmacological recommendations were made. The information provided concerned care services, the disease process, or nursing care. The consultant frequently coached the requesting caregivers on how to approach psychological, social, and spiritual problems or problems experienced by the informal caregiver, as well as how to deal with problems they themselves experienced. To solve problems concerning daily functioning or the organization of care, the requesting caregiver was referred to home care services. Only at the Table 3 Examples of Initial Questions Concerning General Questions and Patient-Related Consultations General Questions Where can I find information on grief and bereavement? What is the best treatment for mucositis? Could you please give me literature about hospice care? Do you have a guideline or protocol for opioid-rotation? We want to organize a teaching session about palliative care for our nurses; can you help to make a program? What skills do I need to set up/start a palliative care team in our hospital? Patient-Related Consultations I have a patient of 67 years with a carcinoma of the prostate and bone metastases, who is in a lot of pain. He also is very depressed. He is on paracetamol and morphine. What else can I try? My patient is very agitated and doesn t sleep; his relatives are exhausted. What can I do? explicit request of the professional caregiver did the consultant provide technical or organizational assistance. For social and spiritual problems, it was sometimes recommended to refer the patient to social work or pastoral care. The evaluation questionnaire was sent to the requesting caregivers in the last 10 months of the study and only to professional (not informal) caregivers requesting consultation for a first or second time. Therefore, only 1,228 out of 1,773 patient-related consultations were evaluated. The response rate was 75%. Consultation was perceived as helpful for the professional caregivers in 88%. Consultation was not considered to be helpful for 4% of the nurses in hospitals and nursing homes, 5% of the clinical physicians, 6% of the GPs, and 11% of the district nurses. The quality of care improved according to 65% of the respondents, 27% said it remained the same, and 1% thought it had deteriorated. Although not registered by 2 PCC teams for 143 consultations, 11% of the professionals were of the opinion that consultation prevented hospital admission of patients in home care. Discussion This study reports the first results of one year of the services of PCC teams in The Netherlands. The results demonstrate that consultations are requested mainly by professionals in primary care, and often concern patients in home care who are diagnosed with cancer and have a short prognosis and a low performance status. The problems discussed reflect the main focus of

Vol. 27 No. 1 January 2004 Palliative Care Consultation in The Netherlands 57 Table 4 Patient Characteristics in Patient-Related Palliative Care Consultations (n 1,773) n a % (95% CI) Sex 1,752 M 49.9 (47.6 52.3) F 50.1 (47.7 52.4) Age 1,603 mean SD 64 15 (range) (7 100) Diagnosis 1,766 Cancer 90.5 (89.1 91.9) Neurological 2.6 (1.9 3.5) Heart failure 1.0 (0.6 1.5) COPD 0.9 (0.5 1.5) AIDS 0.3 (0.1 0.7) Other 4.7 (3.8 5.8) Prognosis 1,672 6 months 4.7 (3.8 5.9) 1 6 months 33.1 (30.8 35.3) 1 week 1 month 31.7 (29.5 33.9) 1 day 1 week 13.3 (11.7 15.0) 24 hours 1.6 (1.0 2.3) Unknown 15.6 (13.9 17.3) ECOG performance 1,655 status b 0 0.8 (0.5 1.4) 1 3.4 (2.6 4.4) 2 12.0 (10.5 13.6) 3 29.4 (27.2 31.6) 4 54.3 (51.9 56.7) Place of Care 1,675 At home 77.3 (67.1 71.4) Hospital/hospice/ 22.7 (28.6 32.9) nursing home a Missing items were systematically checked but could not always be remembered by the consultants. Sometimes items appeared not to be relevant in the consultation process and, therefore, remained missing. b Eastern Cooperative Oncology Group scale (0-fully active; 4-completely bedridden). the medical profession (and literature) on physical and psychological symptom control and, to a lesser extent, the recognition and management of social and spiritual problems. As perceived by the requesting caregivers, the support given and the recommendations made are helpful and improve the quality of care. The nationwide character of the study, in which all but one PCC team participated and registered all consultations during one year, guarantees representative results for PCC in The Netherlands. One limitation of this study is that the effect of consultation was only evaluated from the perspective of the requesting caregiver. Evaluation from the perspective of the patient in palliative care, however, is difficult; 12 a pilot study demonstrated that GPs were reluctant to reveal the names and addresses of patients for research purposes, and only 2 of 20 GPs were willing to hand over a short questionnaire to the patient. 13 Although patients with non-cancer diagnoses appear to be under-represented, and despite a different approach, goal, or setting, the Dutch PCC teams were involved with patients with comparable characteristics as reported by PCC teams in other countries. 4 6 As in this study, pain was observed as the predominant physical symptom, and the main recommendations concerned medication and the organization of care. 4 6,14 It was difficult to compare other problem categories due to different definitions and the broad range of reported frequencies for psychosocial issues (10% 4 to 74% 6 ) and spiritual needs (not mentioned 4,6 to 60% 14 ). When subdivided into main categories, the problems discussed in the consultations were hardly related to patient characteristics. Nevertheless, the topics per main problem category can still vary considerably. Differences in the frequencies of problem categories were observed for professionals of different disciplines, reflecting their different roles in palliative care. GPs are the principal physicians in the last stage of a terminal illness, which explains their main focus on symptom control, whereas district nurses generally play an important role in the coordination of care. The physicians and nurses in hospitals and nursing homes are interested, in addition to symptom control, in the transfer of the patient to a home situation, which explains their concern about the organization of care, informal caregivers, and daily functioning. GPs regard the care of the dying as important, rewarding, and satisfying, 15 but express discomfort about their competence to perform palliative care adequately. 16 However, with appropriate specialist support, GPs have been found to deliver sound and effective care. 16 The approach in which the professional caregiver consults the PCC team instead of referring the patient might help, in the long term, to enhance the general knowledge and experience of professionals in palliative care. Furthermore, it creates the possibility to discuss problems encountered by the requesting professionals themselves. Another advantage is that the division in responsibility for prescribing medication and the lack of control over decision-making as experienced by the referring GPs 17 can be

58 Kuin et al. Vol. 27 No. 1 January 2004 Table 5 Problem Categories and Topics Per Category Most Frequently Discussed in Patient-Related Palliative Care Consultations (n 1,773 a ) Most Frequently % of Discussed Topics b %of Problem Category (n 4,815) Consultations (n 9,105) Consultations c Physical problems 77.3 Pain 43.5 Constipation 15.1 Nausea 14.9 Dyspnea 11.9 Vomiting 8.7 Delirium 8.0 Fatigue 7.6 Appetite/anorexia 6.8 Oral problems 6.3 Sleeping problems 5.5 Organization of care 35.5 Inventory situation of care 9.5 Use/availability of materials and means 8.0 Coordination of professional care 7.7 Additional professional care 7.6 Admission palliative unit 6.8 Discharge or transfer patient 5.9 Pharmacological problems 34.3 Choice of medication 20.0 Route of administration 13.7 Dosage of medication 13.5 Psychological problems 32.6 Anxiety 12.0 Agitation/confusion 11.5 Depression 4.6 Support requesting caregiver 18.4 Medical knowledge 6.9 Technical skills 3.3 Relationship with the patient 3.2 Problems informal caregivers 16.1 Emotional support 10.4 Practical support 6.4 Communication with professional caregivers 3.3 Social problems 15.1 Communication with significant others 5.1 Lack of informal caregivers 5.0 Dependence 4.0 Spiritual problems 8.6 Acceptance of illness 5.4 Meaning of death 1.7 To be meaningful for others 1.2 Problems daily functioning 7.9 Mobility 4.0 Personal care 3.8 Uncomfortable position 2.1 Leaflets/information material 3.8 General palliative care questions 8.4 Supply of addresses 3.3 Request for education 1.8 Other questions 17.7 General inventory 6.9 Euthanasia 6.2 Inventory in hospice 3.8 a Including 2 missing. b At least three topics and topics in 5% of consultations are presented per category. c Per main problem category, frequently more than one topic was discussed. prevented. Finally, the palliative care can continue to be provided by the professional caregivers the patient is most familiar with. However, it can be questioned whether the problems brought forward by the professional caregivers fully reflect the needs of the patient. The increased number of identified problems, compared to the number of initial questions, demonstrates that the thorough investigation of the situation with the requesting caregiver enables the consultant to identify less evident problems or blind spots in caregiving. When the patient is seen by the consultant, more problems are revealed than in a telephone consultation. This is partly due to the fact that a bedside consultation usually concerns more complex situations, but it also suggests that a bedside consultation identifies problems overlooked by the requesting professional. The added value of bedside consultation, compared to telephone consultation, will be the focus of future research.

Vol. 27 No. 1 January 2004 Palliative Care Consultation in The Netherlands 59 Fig. 1. Identified problems discussed in patient-related telephone consultation. Frequency of problem categories discussed in patient-related telephone consultation requested by general practitioners (black bars), district nurses (dark gray), clinical specialists (light gray) and nurses in hospitals and nursing homes (white bars). * significant differences between GPs versus district nurses; # significant differences between the physicians and nurses in hospitals and nursing homes versus GPs and district nurses (χ 2 ; P 0.0045). The choice made in The Netherlands for PCC teams that educate and support professionals involved in end-of-life care contributes to the provision of palliative care at home for as long as possible. In relation to the increasing need for palliative care in the future, 11 it will help to retain expensive and limited inpatient palliative services for patients in extreme situations or requiring extensive and complex care. Whether this approach does, indeed, improve Table 6 Type of Recommendations and Support Given Per Problem Category (n 4,815 a ) Technical and Pharmacological Information Coaching b Organizational Referral Other Problem Category n Advice % % % Assistance % % % Physical problems 1,369 77 34 7 7 24 35 Organization of care 629 1 36 12 38 30 22 Pharmacological problems 608 86 12 5 4 14 9 Psychological problems 575 45 23 32 6 17 17 Support requesting 326 21 22 41 9 11 26 Caregiver Problems informal caregivers 285 2 32 43 22 25 17 Social problems 267 1 26 44 18 28 15 Spiritual problems 153 1 14 55 5 24 11 Problems daily functioning 140 11 32 9 14 32 23 General palliative care questions 149 3 67 6 10 17 8 Other problems 314 14 27 15 7 14 20 a In the 1,773 patient-related consultations, 4,815 main problem categories were discussed for at least one topic. b The requesting professional was coached by the consultant in how, for example, to inform the patient, to support the patient and the informal caregivers in psychosocial and spiritual issues, and to cope with problems experienced by the requesting professional him- or herself.

60 Kuin et al. Vol. 27 No. 1 January 2004 the quality of palliative care from the patient s perspective and contribute to a general improvement in the knowledge professional caregivers have about palliative care needs, is to be established in future research. Acknowledgments The consultants in the 19 PCC teams are gratefully acknowledged for their accurate registration of the consultations. This study was funded by grants from the Dutch Ministry of Health. References 1. Higginson IJ, Finlay I, Goodwin DM, et al. Do hospital-based palliative teams improve care for patients or families at the end of life? J Pain Symptom Manage 2002;23:96 106. 2. Eakin EG, Strycker LA. Awareness and barriers to use of cancer support and information resources by HMO patients with breast, prostate, or colon cancer: patient and provider perspectives. Psychooncology 2001;10:103 113. 3. Jenkins CA, Schulz M, Hanson J, Bruera E. Demographic, symptom, and medication profiles of cancer patients seen by a palliative care consult team in a tertiary referral hospital. J Pain Symptom Manage 2000;19:174 184. 4. Virik K, Glare P. Profile and evaluation of a palliative medicine consultation service within a tertiary teaching hospital in Sydney, Australia. J Pain Symptom Manage 2002;23:17 25. 5. Homsi J, Walsh D, Nelson KA, et al. The impact of a palliative medicine consultation service in medical oncology. Support Care Cancer 2002;10:337 342. 6. Manfredi PL, Morrison RS, Morris J, et al. Palliative care consultations: how do they impact the care of hospitalized patients? J Pain Symptom Manage 2000;20:166 173. 7. Desmedt M, Michel H. Palliative home care: improving co-operation between the specialist team and the family doctor. Support Care Cancer 2002; 10:343 348. 8. Clark D, ten Have H, Janssens R. Common threads? Palliative care service developments in seven European countries. Palliat Med 2000;14: 479 490. 9. Janssens RJ, ten Have HA. The concept of palliative care in The Netherlands. Palliat Med 2001; 15:481 486. 10. McLaren G, Preston C, Grant B. Evidence-based palliative care. General palliative care should be evaluated. BMJ 1999;319:1573 1574. 11. Francke AL, Wilems DL. Palliative care today and tomorrow. Maarssen, The Netherlands: Elsevier, 2000. 12. McWhinney IR, Bass MJ, Donner A. Evaluation of a palliative care service: problems and pitfalls. BMJ 1994;309:1340 1342. 13. Kuin A, Deliens L, Wal GVD. [Is evaluation of palliative care consultation to general physicians from the perspective of the patient possible [Dutch]?] Nederlands Tijdschrift voor Palliatieve Zorg 2003;4:17 20. 14. Abrahm JL, Callahan J, Rossetti K, Pierre L. The impact of a hospice consultation team on the care of veterans with advanced cancer. J Pain Symptom Manage 1996;12:23 31. 15. Field D. Special not different: general practitioners accounts of their care of dying people. Soc Sci Med 1998;46:1111 1120. 16. Mitchell GK. How well do general practitioners deliver palliative care? A systematic review. Palliat Med 2002;16:457 464. 17. Shipman C, Addington-Hall J, Barclay S, et al. How and why do GPs use specialist palliative care services? Palliat Med 2002;16:241 246.