The role of nurses in euthanasia and physician-assisted suicide in The Netherlands.

BACKGROUND: Issues concerning legislation and regulation with respect to the role of nurses in euthanasia and physician-assisted suicide gave the Minister for Health reason to commission a study of the role of nurses in medical end-of-life decisions in hospitals, home care and nursing homes. AIM: This paper reports the findings of a study of the role of nurses in euthanasia and physician-assisted suicide, conducted as part of a study of the role of nurses in medical end-of-life decisions. The findings for hospitals, home care and nursing homes are described and compared. METHOD: A questionnaire was sent to 1509 nurses, employed in 73 hospitals, 55 home care organisations and 63 nursing homes. 1179 responses (78.1%) were suitable for analysis. The questionnaire was pilot-tested among 106 nurses, with a response rate of 85%. RESULTS: In 37.0% of cases, the nurse was the first person with whom patients discussed their request for euthanasia or physician-assisted suicide. Consultation between physicians and nurses during the decision-making process took place quite often in hospitals (78.8%) and nursing homes (81.3%) and less frequently in home care situations (41.2%). In some cases (12.2%), nurses administered the euthanatics. CONCLUSIONS: The results show substantial differences between the intramural sector (hospitals and nursing homes) and the extramural sector (home care), which are probably linked to the organisational structure of the institutions. Consultation between physicians and nurses during the decision-making process needs improvement, particularly in home care. Some nurses had administered euthanatics, although this task is by law exclusively reserved to physicians.

Course of mental fatigue and motivation in breast cancer patients receiving adjuvant chemotherapy.

BACKGROUND: The purpose of this study is to determine the course of fatigue referring to cognitive symptoms (scale 'mental fatigue') as well as the motivation to start any activity (scale 'reduced motivation'), as a function of chemotherapy, in breast cancer patients undergoing adjuvant chemotherapy. PATIENTS AND METHODS: In a prospective cohort study a sample of 157 patients with breast cancer was interviewed at the first, third and fifth cycle of adjuvant chemotherapy as well as 4 and 12 weeks after completion of adjuvant chemotherapy. Patients were treated with standard adjuvant chemotherapy, either a doxorubicin containing schedule or CMF (cyclophosphamide, methotrexate and fluorouracil). The psychological dimensions of fatigue were measured by the Multidimensional Fatigue Inventory. A linear multilevel model was used for analysing the courses. RESULTS: The course of mental fatigue and motivation were not affected by the type of chemotherapy. The course of mental fatigue and motivation varied, but seemed to be stable during the treatment of chemotherapy. After the completion of chemotherapy, a weak improvement was seen. Relatively many patients experienced depressive symptoms during the study. These symptoms were correlated with both dimensions of fatigue. At all measurements mental fatigue was influenced by type of operation where women with a mastectomy were significantly more mentally fatigued than women that had undergone a lumpectomy, but nevertheless they were significantly more motivated to start any activity. Age, marital status, number of treatments and the interval between the operation and the first treatment of chemotherapy also seemed to be important determinants. CONCLUSIONS: An unequivocal pattern of mental fatigue and reduced motivation during as well as after adjuvant chemotherapy was not found. Depressive symptoms were definitely related to these variables. Type of operation had a significant impact on mental fatigue and motivation to start any activity. Health care providers should be aware of the high rate of patients who experience depressive symptoms during and after the treatment of chemotherapy. Further research should include the trajectory preceding adjuvant chemotherapy and a longer study period afterwards. Moreover, the exact influence of the variables 'age', 'marital status', 'number of treatments' and 'the interval between the operation and the first treatment of chemotherapy' on fatigue is unclear and needs further study.

Prevalence and course of fatigue in breast cancer patients receiving adjuvant chemotherapy.

BACKGROUND: The purpose of this study was to determine the prevalence of fatigue and the course of fatigue as a function of chemotherapy in breast cancer patients undergoing adjuvant chemotherapy. PATIENTS AND METHODS: In a prospective cohort study, a sample of 157 patients with breast cancer were interviewed, using the Rotterdam Symptom Checklist and the Multidimensional Fatigue Inventory, at the first, third and fifth cycle of adjuvant chemotherapy, as well as 4 and 12 weeks after the last cycle of adjuvant chemotherapy. Patients were treated with either a doxorubicin-containing schedule, or cyclophosphamide, methotrexate and 5-fluorouracil (CMF). RESULTS: The courses of general and physical fatigue are to a large extent similar. After the last cycle of chemotherapy, the CMF group reported a significant increase in fatigue, which was followed by a significant reduction. In the doxorubicin group a significant increase in fatigue was only seen during the first cycles of chemotherapy. The fatigue experienced at the first and the last measurements do not differ significantly. CONCLUSIONS: The prevalence of fatigue increased significantly after the start of chemotherapy. After chemotherapy treatment the prevalence rate seemed to decline. A different impact of chemotherapy on the course of fatigue was found. In the doxorubicin group a direct increase in fatigue was found. In the CMF group a moderate direct increase occurred, followed by a delayed strong increase. An increase in fatigue was associated with a decrease in daily functioning. At all measurement occasions fatigue was affected by type of operation, such that women with a mastectomy were more fatigued than women that underwent a lumpectomy. Receiving radiotherapy also led to an increase in fatigue. With this knowledge breast cancer patients can be better informed about what they can expect. Further research should include interventions addressing how to reduce or cope with fatigue during as well as after receiving adjuvant chemotherapy.

Patients' decision-making for migraine and chronic daily headache management. A qualitative study.

The objective of this study was to gain insight into the patients' decision-making for migraine and chronic daily headache management. Patients were recruited by theoretical sampling in Surrey (UK). Semi-structured and tape-recorded interviews (n = 13) were conducted, transcribed verbatim, coded and analysed according to the grounded theory methodology. Thirteen patients (8 migraine and 5 chronic daily headache) described their management. All patients employed multiple behaviours to manage their headaches. From the patients' descriptions emerged their decision-making. Based on experience, perceptions and new information, the decision-making process involved four stages: headache severity, evaluation, decision making and behaviours. Although the participants were passive with regards to certain management strategies, overall they were actively involved in treating and preventing their headaches. Furthermore, they were active decision-makers in choosing appropriate management. Migraine and chronic daily headache patients are actively involved in managing their headaches. They are key decision-makers and should not be overlooked as a resource for effective management.

Management by nurses of primary headache: a pilot study.

Primary headache is a very common condition and one that nurses encounter in many different care settings. Yet there is a lack of evidence as to whether advice given to sufferers is effective and what improvements may be expected in the condition. The aim of this study was to evaluate the advice given by a nurse to primary headache sufferers. The design was quasi-experimental. An experimental group (n = 19) and a control group (n = 25) of primary headache sufferers had their headache parameters of frequency, severity duration and disability (Migraine Disability Assessment) over the previous six months assessed. The experimental group then received advice in the form of health education from a nurse. Both groups kept a headache diary for six months. After six months both groups had their headache parameters assessed again. Compared to the control group, there was a significant reduction in the severity of headaches experienced by the experimental group (p = 0.006). Although there were reductions in frequency and duration of headaches experienced by the experimental group compared to the control group, these were not significant (p = 0.664 and p = 0.235, respectively). The Migraine Disability Assessment showed a trend towards reduced scores in the experimental group compared to controls which were not significant (p = 0.535). This pilot study suggests that health education can be effective in reducing the severity of headaches. However, a larger study over a longer period is needed to evaluate improvements in headache parameters.

Assessment of pain cognitions in cancer patients with chronic pain.

Although reports suggest that beliefs about pain play an important role in the adjustment and pain experience of non-cancer patients, the impact of cognitions on the pain experience is unknown in cancer patients. This study examined the factor structure, reliability, and validity of the Pain Cognition List-Experimental version, a measure developed to assess patients' self-statements about pain and the extent to which patients are effective in dealing with the pain. The Pain Cognition List-Experimental version was administered to 313 cancer patients during hospitalization. Confirmatory factor analysis was conducted to evaluate the adequacy of fit for the original five factors. Because of a failure to replicate the factors, exploratory factor analysis was conducted, finding the factors Pain Impact, Social Comparison, Acquiescence, and Outcome Efficacy. The internal consistency for the factor Pain Impact was high (r = 0.89), while the other three factors showed low reliability. The factor Catastrophizing, usually an important factor in non-cancer patients, did not emerge. No differences were found across sex. The factors Pain Impact and Acquiescence provided evidence for concurrent validity. Patients with district nursing showed higher scores on the factors Pain Impact and Acquiescence, and higher scores on Pain Impact and Acquiescence were associated with higher pain intensity scores. This study was an attempt to evaluate pain cognitions and beliefs in cancer patients. It is concluded that the Pain Cognition List for non-cancer patients cannot be easily used in cancer pain patients and that evaluation of pain cognitions in cancer patients is useful. Health care providers evaluating pain in cancer patients with chronic pain need to be aware of the impact pain cognitions have on patients' pain experience. Although more research is needed, measuring pain cognitions should be considered.

Improving the quality of pain treatment by a tailored pain education programme for cancer patients in chronic pain.

Educational interventions, aiming to increase patients' knowledge and attitude regarding pain, can affect pain treatment. The purpose of this study was to evaluate the effects of a Pain Education Programme (PEP), on adequacy of pain treatment, and to describe characteristics predicting change in adequacy. The PEP consists of a multi-method approach in which patients are educated about the basic principles regarding pain, instructed how to report pain in a pain diary, how to communicate about pain, and how to contact healthcare providers. The effects of the PEP were evaluated taking into consideration the lack of well-established outcome measures to evaluate adequacy of pain treatment, the lack of long-term follow-up, and the influence of missing data.A prospective, randomized study was utilized in which 313 chronic cancer patients were followed-up until 8 weeks postdischarge. Adequacy of pain treatment was evaluated by means of the Amsterdam Pain Management Index (APMI), consisting of an integrated score of patients' Present Pain Intensity, Average Pain Intensity, and Worst Pain Intensity, corrected for patients' Tolerable Present Pain, with the analgesics used by the patient. At pretest, 60% of the patients in the hospital were treated inadequately for their pain. Postdischarge, the control group patients were significantly more inadequately treated at 2 weeks after discharge (56% vs 41%), at 4 weeks after discharge (62% vs 42%) and at 8 weeks after discharge (57% vs 51%) than the intervention group patients. While the level of inadequacy in the control groups remained relatively stable at all assessment points, a slight increase in the percentage of patients being treated inadequately was found in the intervention group patients over time. A beneficial effect of the PEP was found for patients both with and without district nursing. Variables predicting an improvement in adequacy of pain treatment consisted of the PEP, the APMI score at baseline, patients' level of physical functioning, patients' level of social functioning, the extent of adherence to pain medication, patients' pain knowledge, and the amount of analgesics used. These findings suggest that quality of pain treatment in cancer patients with chronic pain can be enhanced by educating patients about pain and improving active participation in their own pain treatment. The benefit from the PEP, however, decreases slightly over time, pointing at a need for ongoing education.

Prevalence and characteristics of headache in Dutch schoolchildren.

The aim of this study was to determine whether there has been an increase in headache prevalence in Dutch children and to compare headache characteristics of children with low, medium and high headache severity.A sample of 2358 schoolchildren between the ages of 10 and 17 years filled out Waters' Headache Questionnaire and the Paediatric Pain Assessment Tool. Results showed that 21% of the boys and 26% of the girls at elementary school, and 14% of the boys and 28% of the girls at high school reported weekly headaches. When compared to figures from a previous study in the Netherlands published in 1985, the prevalence of weekly headaches in 10-17-year-olds has increased by 6%. In boys at elementary school, the prevalence of headaches with a frequency of a few times a week has doubled. Children with low, medium and high headache severity differed with respect to all headache characteristics, i.e. pain quality, accompanying symptoms, warning signals, location, onset, impact of headache, family occurrence, perceived cause, medical consultation, and school absence.

Rheumatology outpatient nurse clinics: a valuable addition?

OBJECTIVES: "Transmural rheumatology nurse clinics," where nursing care is provided under the joint responsibility of a home care organization and a hospital, were recently introduced into Dutch health care. This article gives insight into outcomes of the transmural rheumatology nurse clinics. METHODS: Patients with rheumatologic conditions who attended a transmural nurse clinic, in addition to receiving regular care, were compared with patients with rheumatologic conditions who received regular care only. The main outcome measures were the need for rheumatology-related information, the use of aids and adaptations, the use of health care services, and daily functioning. RESULTS: Attending a transmural nurse clinic does not influence patients' need for information, the application of practical aids and adaptations, or daily functioning. However, attending a transmural nurse clinic does result in more contacts with rheumatologists and occupational therapists. CONCLUSIONS: Attending transmural nurse clinics does not result in major differences in outcomes compared with regular care. Further studies are needed to appreciate the long-term effects of transmural nurse clinics.

Content and outcomes of Dutch nurse clinics for children with asthma.

Dutch specialist asthma nurses run extramural and transmural nurse clinics for children with asthma. Extramural clinics are run under the responsibility and in the premises of a home care organization. Transmural clinics are run in an outpatient clinic in close collaboration and joint responsibility between home care organizations and hospitals. Effects of and differences between these clinics were determined by using a quasiexperimental design. Visiting a nurse clinic appears to result in a reduced information need and reduced use of health care services. Parents of asthmatic children visiting transmural nurse clinics appeared to have a lower information need than those attending extramural nurse clinics.

Relatives of hospitalized stroke patients: their needs for information, counselling and accessibility.

AIM OF THE STUDY: The purpose of this study is to explore the needs of stroke patients' relatives during the hospitalization period. BACKGROUND: In the Netherlands, the consequences of a stroke, and the needs of stroke patients and their relatives are becoming increasingly important. In hospital, however, nursing care is still focused on the patients. A previous qualitative study on the needs of relatives of stroke patients identified four categories of needs. This present study aims to test the results of the previous study in a larger setting and to identify the factors that influence the needs of the relatives. DESIGN/METHODS: This study uses a cross-sectional design. A questionnaire was designed for the purpose of data collection. This questionnaire was completed by 106 relatives of stroke patients admitted to the neurology wards of 19 Dutch hospitals (response rate 64%). The data were analysed using descriptive and multivariate analyses. RESULTS/FINDINGS: The findings of the study indicate that the needs of the relatives of stroke patients are best divided into three categories. These are the need for information, counselling (a combination of communication and support) and accessibility. In all cases, the most important need of the relatives of stroke patients is that their questions are answered honestly. The findings show a discrepancy between the importance of the needs and the degree to which these needs are met. Multivariate data analyses show that female relatives requested most information, whereas highly educated relatives needed less counselling. Satisfaction about the care provided is positively influenced by the period of hospitalization and negatively influenced by prior experiences of hospitalization.

The occurrence of recall bias in pediatric headache: a comparison of questionnaire and diary data.

OBJECTIVE: To investigate whether children and adolescents can recall prior headache complaints accurately and to study whether age, gender, headache severity, preferred coping strategies, depression, somatization, and trait anxiety are related to recall errors, causing recall bias. METHODS: A retrospective headache questionnaire and a prospective 4-week headache diary were filled out by 181 children aged 9 to 16 years who experienced headache at least weekly. In addition, several other questionnaires were administered, measuring coping strategies, depression, somatization, and trait anxiety. Headache frequency, intensity, and duration, as scored on the questionnaire and the diary, were compared using Wilcoxon tests. Regression analyses were performed to study whether age, gender, headache severity, preferred coping strategies, depression, somatization, and trait anxiety can predict the size of differences between the diary and the questionnaire. RESULTS: Compared with the diary, headache intensity and headache duration were overestimated on the questionnaire. At group level, median headache frequency as measured by the diary and the questionnaire was equal. Regarding headache frequency and headache intensity, age and headache severity were statistically related to errors in recall. For headache frequency, depression was also predictive of the size of recall error. CONCLUSIONS: Recall errors occur when children are asked to report their headaches on a retrospective questionnaire. As compared to a prospective diary, pain complaints are evaluated more negatively on a questionnaire. Other factors such as age, depression, and headache severity influence the way children and adolescents recall their headaches. To minimize bias, the use of a diary when studying recurrent headache complaints in children is recommended.

Stroke patients' needs and experiences regarding autonomy at discharge from nursing home.

In this qualitative study stroke patients rehabilitating in nursing homes experienced an increase in their autonomy (particularly in self-determination, independence and self-care) in the last weeks before discharge. The change in autonomy was found to be related to regained abilities and self-confidence, and to patients' strategies (e.g. taking initiative, being assertive). The attitude of health professionals and family, and the nursing home could influence patient autonomy. Overprotection, paternalism, care routines and an inconsistent approach constrain autonomy. Conversely, attentiveness, tailored interventions and a respectful dialogue facilitate autonomy, like moderate instrumental and emotional support by the family. Nursing homes can enhance autonomy by minimizing care routines and by providing room for doing activities independently and privately. Attention to patient autonomy may improve patients' active participation in rehabilitation, quality of life, and autonomous living after discharge. Multidisciplinary guidelines based on the results may increase attention to the stroke patients' autonomy and stimulate a team approach.

Dutch transmural nurse clinics for chronic patients: a descriptive study.

'Transmural care' can be defined as patient-tailored care provided on the basis of close collaboration and joint responsibility between hospitals and home care organizations. One form of transmural care is transmural nurse clinics for chronically ill. This study describes 62 transmural nurse clinics in the Netherlands. It was established that most of these nurse clinics are held by a specialized community nurse at a hospital outpatient clinic. The principal tasks of the specialized nurse at the clinic are providing illness-related information and supporting patients in dealing with the illness. Only a few unpublished evaluations of Dutch transmural nurse clinics have been conducted. Future research has to provide more insight into the impact of transmural nurse clinics on the quality and continuity of care.

Self-care and quality of life in patients with advanced heart failure: the effect of a supportive educational intervention.

OBJECTIVE: The goal of this study was to determine the effects of a supportive educational nursing intervention on self-care abilities, self-care behavior, and quality of life of patients with advanced heart failure. DESIGN: The study design was an experimental, random assignment. SETTING: The study was located at the University Hospital in Maastricht, The Netherlands. PATIENTS: The study included 179 patients (mean age 73 years, 58% men, New York Heart Association classification III and IV) admitted to a university hospital with symptoms of heart failure. OUTCOME MEASURES: Outcome measures included self-care abilities (Appraisal of Self-care Agency Scale), self-care behavior (Heart Failure Self-care Behavior Scale), 3 dimensions of quality of life (functional capabilities, symptoms, and psychosocial adjustment to illness), and overall well-being (Cantril's ladder of life). INTERVENTION: The intervention patients received systematic education and support by a nurse in the hospital and at home. Control patients received routine care. RESULTS: Self-care abilities did not change as a result of the intervention, but the self-care behavior in the intervention group was higher than the self-care behavior in the control group during follow-up. The effect of the supportive educational intervention on quality of life was limited. The 3 dimensions of quality of life improved after hospitalization in both groups, with no differences between intervention and control group as measured at each follow-up measurement. However, there was a trend indicating differences between the 2 groups in decrease in symptom frequency and symptom distress during the 9 months of follow-up. CONCLUSION: A supportive educational nursing intervention is effective in improving self-care behavior in patients with advanced (New York Heart Association class III-IV) heart failure; however, a more intensive intervention is needed to show effectiveness in improving quality of life.

Palliative care: an international view.

This review article addresses first the different palliative care models currently in use. Studies addressing the effectiveness of the models used are briefly summarized. Special attention is further given to models developed and tested in palliative care in children. Finally, the problems and pitfalls encountered in evaluating palliative care services are highlighted and recommendations are made where further research is still warranted.

Quality and continuity of care in Dutch nurse clinics for people with rheumatic diseases.

OBJECTIVE: Recently a new form of nurse clinic for people with rheumatic diseases has been introduced into Dutch health care. This study gives insight into: (i) patients' perceptions about the quality and continuity of care given at these (transmural) nurse clinics; and (ii) specialized rheumatology nurses' and rheumatologists' perceptions about the quality and continuity of care in the clinics. DESIGN: Validated measurement tools (QUOTE and QCC) were used, before and after patients visited a clinic, to determine patient perceptions about the quality and continuity of care. Semi-structured interviews with professionals were used to gather information about their perceptions. SETTING: The study was carried out at five locations in The Netherlands where a home care organization and a general hospital collaborated closely and had joint responsibility for a transmural rheumatology nurse clinic. STUDY PARTICIPANTS: A total of 128 patients, six specialist rheumatology nurses and four rheumatologists. INTERVENTION: Transmural nurse clinics for people with rheumatic diseases. RESULTS: In general, patients were positive about the quality and continuity of care given at the clinics. Some continuity aspects, like the presence of a locum nurse and providing the locum with sufficient information could be improved. Professionals were positive about the information given at the clinics, which is additional to the information given by a rheumatologist. Professionals were less positive about some of the clinics' preconditions. CONCLUSION: In this study, a control group (e.g. patients who received standard rheumatologist care) was not available. However, in comparison with patients' experiences of standard medical care in other (comparable) research, patients' experiences in this study were very positive. It was concluded that Dutch transmural nurse clinics, to a large extent, meet patients' and professionals' expectations and were a positive development in the care of rheumatic patients.

Recurrent headache, coping, and quality of life in children: a review.

OBJECTIVES: To clarify the concepts of coping with pain and quality of life (QoL) and to present a literature review of the strategies that children with recurrent headaches use to cope with their pain, the impact of recurrent headaches on children's QoL, and the influence of personal and situational variables on headache, coping, and QoL in children. METHODS: The literature search encompassed published articles that were found by means of a CD-ROM search of MEDLINE (1966 to December 1998) and PsycLIT (1974 to December 1998) and the snowball method. RESULTS: In pediatric headache research, only three studies have been found in which children report the use of various coping strategies, and only two studies considered QoL. Demographic factors and psychological variables such as depression, anger, and anxiety influence headache prevalence. The impact of headache-related variables such as headache type, severity, perceived cause, and prior experience on QoL has only been studied in adults. CONCLUSIONS: More research on coping and QoL is needed in pediatric headache. The conceptual model that is presented in this article may serve as a guide.

Innovations in the nursing care of the chronically ill: a literature review from an international perspective.

This literature review focuses on substitution-related innovations in the nursing care of chronic patients in six western industrialized countries. Differences between primary and secondary care-orientated countries in the kind of innovations implemented are discussed. Health care systems are increasingly being confronted with chronic patients who need complex interventions tailored to their individual needs. However, it seems that today's health care professionals, organizations and budgets are not sufficiently prepared to provide this kind of care. As a result, health care policy in many countries targets innovations which reduce health care costs and, at the same time, improve the quality of care. Frequently, these innovations are related directly to the 'substitution of care' phenomenon, in which care is provided by the most appropriate professional at the lowest cost level, and encompass advanced nursing practice, hospital-at-home care and integrated care. The main conclusion of this paper is that integrated care innovations are implemented in both primary care as well as in secondary care-orientated countries. However, innovations in hospital-at-home care and advanced nursing practice are primarily implemented in primary care-orientated countries. Whether these innovations positively influence the quality of care, costs of care or patients' use of health care facilities remains rather unclear.