552 Journal of Pain and Symptom Management Vol. 29 No. 6 June 2005

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1 552 Journal of Pain and Symptom Management Vol. 29 No. 6 June 2005 Original Article A Comparison Between Telephone and Bedside Consultations Given by Palliative Care Consultation Teams in The Netherlands: Results from a Two-Year Nationwide Registration Veron Schrijnemaekers, PhD, Annemie Courtens, PhD, Annemieke Kuin, PhD, Barbara van der Linden, MD, PhD, Myrra Vernooij-Dassen, PhD, Lia van Zuylen, MD, PhD, and Marieke van den Beuken, MD Department of Transmural Care (V.S., A.C., M.v.d.B.), University Hospital Maastricht, Maastricht; Institute for Research in Extramural Medicine (A.K.), VU University Medical Center, Amsterdam; Julius Center for General Practice and Patient-Oriented Research (B.v.d.L.), University Medical Center Utrecht, Utrecht; Center for Quality of Care Research (M.V.-D.), University Medical Center St. Radboud, Nijmegen; and Department of Medical Oncology (L.v.Z.), Erasmus MC-Daniel den Hoed Cancer Center, Rotterdam, The Netherlands Abstract Palliative Care Consultation (PCC) teams in The Netherlands give support to professional caregivers in palliative care. In contrast to many other countries, consultants only give advice. They do not give prescriptions. Most consultations are given by phone; in some, the consultant also visits the patient. For two years, the PCC teams registered all consultations prospectively on a standard registration form in a nationwide database. The aim of this study was to obtain more insight into the possible differences between telephone and bedsides consultations with regard to characteristics of consultants, requesting caregivers, and the patients, as well as the number and kind of problems discussed. The data demonstrate that bedside consultations show more variety in requesting caregivers and are conducted more often for patients. Bedside consultations also addressed a higher number of problems and a wider range of domains (e.g., psychological, spiritual, daily functioning, and support for informal caregivers). These results suggest that bedside consultations have a surplus value compared to telephone consultations. More rigorous study is needed to compare the relative merits of different methods of consultations in palliative care. J Pain Symptom Manage 2005;29: U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words Palliative care, consultation teams, evaluation Address reprint requests to: Veron Schrijnemaekers, PhD, University Hospital Maastricht, Department of Transmural Care, P.O. Box 5800, 6202 AZ Maastricht, The Netherlands. Accepted for publication: September 27, U.S. Cancer Pain Relief Committee Published by Elsevier Inc. All rights reserved. Introduction The need for palliative terminal care is expected to increase considerably in the next decades. 1 4 To meet this increasing need, palliative care services have been developed /05/$ see front matter doi: /j.jpainsymman

2 Vol. 29 No. 6 June 2005 Phone vs. Bedside Consultation in Palliative Care 553 throughout the world. 5 These services vary in patient populations, settings, and goals. Palliative care consultation (PCC) teams are perceived to have a positive impact on patient care and appear to fill a gap in the multi-specialty provision of care. 6 8 To compare the merits of various palliative care models, more evidence and insight is needed. 6 9 In The Netherlands, twenty-three mostly multidisciplinary PCC teams were established between 1997 and These teams inform, support, and advise professional caregivers in inpatient and outpatient settings, focusing on care for terminally ill patients or general palliative care issues. 10 In The Netherlands, consultants of PCC teams may provide support to professional caregivers but not take over the responsibility of care or give additional care to the patient. In 15 of the 23 PCC teams, consultants also may visit the patient (bedside consultation). This additional bedside support for the professional caregivers is expensive and time-consuming, and, therefore, should have a surplus value compared to consultations by telephone (telephone consultations). To gain more insight into the possible differences between telephone and bedside consultations, characteristics of the consultants, the requesting caregivers, and the patients were described for the telephone and bedside consultations separately. The number and kind of problems discussed are presented for both kinds of consultations. Methods The Dutch PCC teams inform, support, and advise professional caregivers in inpatient and outpatient settings and are mainly reached by telephone. After an exploration of the problem(s) with the requesting caregiver, the consultant answers the question(s) immediately or confers with one or more team members before recommendations are given (telephone consultation). If necessary or desirable, team members of 15 out of 23 PCC teams in The Netherlands additionally have the possibility to visit the patient (bedside consultation). There are no predefined criteria or protocols describing the choice for telephone or bedside consultations. Bedside consultations are only conducted by mutual agreement between the requesting caregiver and the consultant. The bedside consultations contain a further exploration of the patient s care needs by the consultant where the patient resides (at home, in the hospital, nursing home, residential homes or hospice). Consultants do not take over responsibility of care. The recommendations based on this exploration are discussed with the requesting caregivers. Registration and Evaluation A prospective survey was performed based on a systematic registration of all consultations given by the PCC teams. Each consultation was registered on a standard registration form developed by a multidisciplinary group of researchers. 10 The registration form included information about the type of consultation, the consultants, the requesting professionals, and the patients demographics (e.g., sex, age, diagnoses, prognoses, performance status). Furthermore, the questions that were initially asked by the caregiver (initial questions) and all problems identified during the exploration of the consultant (identified problems) were registered. The data were registered by the consultant. All registration forms were systematically checked for missing values and inconsistencies by a researcher. If necessary, members of the PCC team were contacted to optimize the completeness of the data. Within two weeks after the consultation, a short questionnaire developed by the research group was mailed to the requesting caregivers to evaluate the perceived effect of the consultation. Both the registration form and the evaluation form were entered into a nationwide database and converted into an SPSS data file for analysis. During the period March 2001 to March 2003, 4740 consultations were registered by 23 PCC teams. To address differences between telephone and bedside consultations, we first selected the consultations of the 15 PCC teams that offered telephone and bedside consultations to professionals to increase the comparability in relation to the possibilities of the teams. These teams conducted 2952 consultations. Subsequently, only patient-related telephone and bedside consultations (n 2839) were selected. Telephone consultations about

3 554 Schrijnemaekers et al. Vol. 29 No. 6 June 2005 general questions that did not directly concern a patient were excluded (n 113). The final 2839 consultations were used for analyses. Statistics Comparisons of means (parametric values) were performed by two-tailed t-tests. Pearson chi-square tests were used for the comparisons of proportions. Additionally, binary logistic regression analyses were performed to correct for covariates. Results Fifteen PCC teams who performed both bedside and telephone consults registered 2839 consultations: 1760 telephone consultations and 1079 bedside consultations. The average time needed for consultation was 1.4 hours for telephone consultation and 5.3 hours for bedside consultation. Characteristics of Consultants, Requesting Caregivers, and Patients The nurse plays a central role in the Dutch PCC teams, both in telephone and bedside consultations (Table 1). Physician-consultants conducted fewer bedside consultations compared to telephone consultations than the nurse-consultants. The telephone consultations were requested mainly by homecare professionals (general practitioners [GPs] and district nurses) (72%); the majority of the bedside consultations were given by intramural working professionals (medical specialist, nursing home specialist, and nurses) (56%). The majority of the telephone (70%) and bedside (53%) consultations came from physicians. Half the patients were female, the average age was 66 years, and about 90% of the consultations concerned patients with cancer (Table 1). Sex and diagnoses demonstrated relatively small but statistically significant differences between the telephone and bedside consultations. Substantially more telephone consultations took place for patients at home or in a residential or nursing home. Bedside consultations were more likely when the patient was admitted to a hospital or hospice. Bedside consultations were given more often for patients with a prognosis of more than one month. Performance status was Table 1 Characteristics of Consultants, Requesting Caregivers, and Patients in Patient-Related Telephone and Bedside Consultations Telephone Bedside (n 1760) (n 1079) Consultant(%) Nurse c Medical specialist 11 6 Nursing home specialist 13 7 General practitioner 2 1 Requesting Caregiver(%) General practitioner c District nurse 10 5 Intramural physician 8 24 Intramural nurse 9 32 Other a Patient Sex(%) Male d Female Age, yrs (mean SD) Range (5 100) (5 100) Place of care (%) At home c Residential or nursing 8 4 home Hospital Hospice 2 9 Other 2 2 Diagnoses (%) Cancer e Neurological 3 2 Heart failure 2 1 COPD 1 1 AIDS 0 0 Other 5 3 Prognosis (%) 6 months 5 5 c 1 6 months week 1 month day 1 week hours 1 1 unknown ECOG b Performance Status (%) a e.g., assistant-nurse, informal caregiver, patient. b Eastern Co-operative Oncology Group scale (0 fully active; 4 completely bedridden). c P (Pearson chi-square test / with respect to age: t-test). d P 0.05 (Pearson chi-square test / with respect to age: t-test). e P 0.01 (Pearson chi-square test / with respect to age: t-test). low for both consultation groups; about 50% of the patients were completely bedridden and dependent on care. Questions On the registration form a distinction was made between the initial question(s) posed by

4 Vol. 29 No. 6 June 2005 Phone vs. Bedside Consultation in Palliative Care 555 the requesting caregiver and the finally identified problem(s) after further exploration by the consultant. In the initial contact, the requesting caregivers asked an average of 1.9 and 2.4 initial questions in telephone and bedside consultations, respectively (Table 2). After a further exploration of the questions, 3.7 relevant problems were identified in the telephone consultations and 7.0 relevant problems were identified in bedside consultations. The foregoing implies that the number of telephone problems almost doubled and the bedside problems almost tripled during exploration. The average number of initial questions and identified problems differed significantly between telephone and bedside consultations (P 0.001). The change score (identified problems minus initial questions) was also significantly different for telephone as well as bedside consultations (P 0.001). The problems discussed in the consultations were divided into 11 main categories (e.g., physical, social, spiritual). Physical problems were the most prevalent problems in telephone consultations (72%) and bedside consultations (81%) (Table 3). The percentages of some problems were discussed considerably more often in the bedside consultations, including psychological (1:2), social (1:3), spiritual (1:4), daily functioning problems (1:4), and support for informal caregivers (1:3). Only questions about pharmacological problems were discussed more often during telephone consultations. The majority of the most prevalent topics per main category were comparable for the telephone and bedside consultations (Table 3). Also, the sequence of the top three was often comparable. Considering the percentages of topics discussed, however, the percentages often were three- to fourfold higher during bedside consultations (especially in case of social, spiritual, and daily functioning problems, as well as the support of the informal caregivers). For example, emotional support for the informal caregiver was an issue in 6% of the telephone consultations, whereas this topic was discussed in more than a quarter (27%) of the bedside consultations. Binary logistic regression analyses were performed to check whether the differences between the topics discussed (Table 3) remain present if corrections are made for some covariates that are different in stastistically significant bivariate analyses: the discipline of the consultant, the discipline of the requesting caregiver and the prognosis of the patient ( / 1 month). These analyses showed highly statically significant odds ratios (OR) in favor of the bedside consultations for most main problem categories: physical (OR 2.7), psychological (OR 2.4), social (OR 4.4), spiritual (OR 3.8), daily functioning (OR 4.3), organization of care (OR 1.6), support informal caregiver (OR 4.2), support requesting caregiver (OR 1.8), and other (OR 5.5). For pharmacological problems and general questions, the odds ratio was 1.3 (not statistically significant). Evaluation Consultation was perceived as helpful by more than 90% of the professional caregivers (Table 4). The quality of care improved according to two thirds of the respondents. These results demonstrate no major and clinically relevant differences between bedside and telephone consultations. According to the requesting professionals, bedside consultations were more often helpful for patients and informal caregivers compared to telephone consultations. Discussion The PCC teams in The Netherlands give support to professional caregivers in palliative care. Table 2 Average Number of Initial Questions and Identified Problems in Patient-Related Telephone and Beside Consultations Average No. of Initial Average No. of Identified Change Score Questions per Consultation Problems per Consultation (Identified minus Initial) Consultations and Numbers Mean (SD) Mean (SD) Mean (SD) Telephone n a (1.4) 3.7 a (3.2) 1.8 a (2.9) Bedside n (2.3) 7.0 (6.0) 4.6 (5.9) a Significantly different from bedside (t-test, P 0.001).

5 556 Schrijnemaekers et al. Vol. 29 No. 6 June 2005 Table 3 Problems per Main Category and Most Frequently Discussed Topics a Per Main Category in Patient-Related Telephone and Bedside Consultations % with Respect to Number of Consultations b Main Problem Category Telephone (n 1760) Bedside (n 1079) Physical problems c Pain 40 Pain 52 Nausea 12 Constipation 22 Dyspnea 10 Fatigue 21 Nausea 20 Dyspnea 20 Appetite / anorexia 14 Oral problems 12 Psychological problems c Agitation / confusion 10 Anxiety 19 Anxiety 9 Coping of loss 11 Coping of loss 3 Agitation / confusion 11 Social problems c Lack of informal caregivers 4 Lack of informal caregivers 12 Communication with significant others 3 Dependence 11 Loneliness 2 Communication with significant 10 others Spiritual problems 5 19 c Acceptance of illness 3 Acceptance of illness 12 Meaning of death 1 Meaning of death 4 Being useful / occupied / engaged 0.3 To be meaningful for others 3 Problems in daily functioning 4 16 c Mobility 2 Mobility 9 Personal care 1 Personal care 8 Household activities 1 Household activities 4 Pharmacological d problems Choice of medication 19 Choice of medication 12 Route of administration 16 Route of administration 10 Dosage of medication 15 Dosage of medication 8 Organization of care c Use / availability of materials 12 Inventory situation of care 25 and means Admission palliative unit 9 Additional professional care 13 Additional professional care 9 Discharge or transfer patient 11 Use / availability of materials 10 and means Coordination of care 10 Support informal caregivers c Emotional support 6 Emotional support 27 Practical support 4 Practical support 16 Communication with 3 Communication with 6 professional caregivers professional caregivers Support requesting caregivers e Medical knowledge 6 Medical knowledge 6 Technical skills 3 Technical skills 6 Own emotions 3 Counselling skills 3 Other problems 9 37 c Euthanasia 6 General inventory 26 General inventory 2 Euthanasia 7 Inventory in hospice 0.2 Inventory in hospice 5 General palliative care questions 7 9 Supply of addresses 3 Leaflets / information material 5 Leaflets / information material 2 Supply of addresses 2 Coordination / supply of materials 1 Coordination / supply of materials 1 a At least three topics and topics in 10% of consultations are presented per main category. b Per main problem category, frequently more than one topic was discussed. c P (Pearson chi-square test). d P 0.01 (Pearson chi-square test). e P 0.05 (Pearson chi-square test).

6 Vol. 29 No. 6 June 2005 Phone vs. Bedside Consultation in Palliative Care 557 In contrast to many other countries, they only give suggestions for treatment and never prescribe medication. The requesting caregiver decides whether or not the suggestions are to be followed. Most consultations are given by telephone, but in some cases, the consultant also visits the patient. This study demonstrates, in addition to some minor clinically relevant differences, some interesting differences between telephone and bedside consultations. With regard to the requesting caregivers, it appears that the bedside consultations are more equally spread over the settings and professionals compared to telephone consultations. The finding that the prognosis of patients is shorter in the case of telephone consultations suggests that requesting caregivers have more need for confirmation or brief advice if the prognosis of a patient is short (less than a month), while in the event of a better prognosis (more than one month), there can be a greater surplus value for a further exploration in a bedside consultation. It is possible that for patients with a somewhat longer life expectancy, it is seen as more worthwhile to inventory problems in the various domains of palliative care. The average number of initial questions does not differ a great deal between telephone and bedside consultations (1.9 vs. 2.4). However, the average number of identified problems in bedside consultations show a substantially higher number (3.7 vs. 7.0). These problems also show a wider diversity in nature. Compared to telephone consultations, bedside consultations identified more problems for the social, spiritual, daily functioning, and support informal caregivers domains. These domains were hardly discussed in telephone consultations. These differences are not dependent on differences in patient characteristics (prognoses), the discipline of the requesting caregiver, or the discipline of the consultant. Bedside consultations, with a further exploration in the presence of the patient, appear to better cover the complete range of possible problems and fit in better with the definition of palliative care (support for the family as well as psychosocial and spiritual problems are specifically mentioned as points of interest in palliative care). 4 In addition to the higher number of problems and the wider range of domains addressed in bedside consultations, the evaluation of the consultations by the requesting caregivers indicate that bedside consultations were more often helpful to the patient and informal caregivers. However, we have to be cautious in drawing firm conclusions. There was no random allocation to type of consultation and no information was gathered on the decision-making process resulting in a telephone or bedside consultation. The decision-making process can possibly be influenced by the complexity of the patients situation, available time, or the working experience of the consultant and/or requesting caregiver. More research must be done on the decision-making process and factors that have influence on the decision to do or not to do bedside consultations. For Dutch palliative care practice, where PCC teams give support to professional caregivers and never take over the responsibility of care, there are some indications that time-consuming Table 4 Evaluation of the Perceived Affect According to the Requesting Caregiver in Patient-Related Telephone and Bedside Consultations Telephone Bedside (n 876) (n 578) Was the consult helpful for you as requesting caregiver? Yes a No 6 4 Don t know 1 5 To what extent has the consult changed the quality of care? Better Equal Worse 1 1 Don t know 4 6 Was the consult helpful for the patient in your opinion? Yes a No 17 8 Don t know 10 9 Was the consult helpful for the informal caregiver(s) in your opinion? Yes a No 17 7 Don t know Do you think that the consultation prevented hospital admission? b Yes a No Don t know a P (Pearson chi-square test). b Not applicable for patients who stayed in a hospital or hospice.

7 558 Schrijnemaekers et al. Vol. 29 No. 6 June 2005 bedside consultations have a surplus value compared to telephone consultations. In agreement with a recently published review, we conclude that more rigorous study is needed to compare the relative merits of different methods of consultations in palliative care. It is a challenge to tackle the many methodological and ethical problems in palliative care research, in which the patient s perspective as well as the cost effectiveness should be highlighted. Acknowledgments The consultants of the PCC teams are acknowledged for their accurate registration of the consultations. References 1. McLaren G, Preston C, Grant B. Evidence based palliative care. General palliative care should be evaluated. Br Med J 1999;319(7224): Francke AL, Willems DL. Palliatieve zorg vandaag en morgen. Feiten, opvattingen en scenario s (Palliative care today and tomorrow. Facts, opinions, and scenarios). Maarsen: Elsevier, Welzijn en Sport (VWS). Palliative care for terminally ill patients in The Netherlands. Dutch Government Policy. Ministerie van Volksgezondheid, Welzijn en Sport (VWS), Den Haag (The Hague), WHO. National cancer control programs: policies and managerial guidelines. Geneva: World Health Organization, Higginson IJ. Evidence based palliative care. There is some evidence and there needs to be more. Br Med J 1999;319(7208): 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(2): Goodwin DM, Higginson IJ, Edwards AG, et al. An evaluation of systematic reviews of palliative care services. J Palliat Care 2002;18(2): Smeenk FW, van Haastregt JC, de Witte LP, Crebolder HF. Effectiveness of home care programs for patients with incurable cancer on their quality of life and time spent in hospital: systematic review. Br Med J 1998;316(7149): Higginson IJ, Finlay IG, Goodwin DM, et al. Is there evidence that palliative care teams alter endof-life experiences of patients and their caregivers? J Pain Symptom Manage 2003;25(2): Kuin A, Courtens AM, Deliens L, et al. Palliative care consultation in The Netherlands: a nationwide evaluation study. J Pain Symptom Manage 2004;27(1):53 60.