Lebanese cancer patients: communication and truth telling preferences.

The purpose of this study was to describe and interpret the phenomenon of communication as lived by Lebanese cancer patients. Phenomenology based on the Utrecht School was chosen as an interpretive descriptive methodology to guide the processes of data collection, analysis and synthesis. In-depth semi structured interviews were carried out with a purposeful sample of ten cancer patients. Results of this qualitative study emphasise the needs of Lebanese cancer patients for a clear and truthful communication with healthcare professionals, and family members. Informants highlighted the influence of words used during communication on their outlook and morale. They also stressed the need to move from the paternalistic approach in care provision to patient-centered care that promotes patient autonomy. Informants clearly accentuated their rights to be told the truth about their condition.

Alleviation of pain and symptoms with a life-shortening intention.

This article reports the findings of a study into the role of Dutch nurses in the alleviation of pain and symptoms with a life-shortening intention, conducted as part of a study into the role of nurses in medical end-of-life decisions. A questionnaire survey was carried out using a population of 1509 nurses who were employed in hospitals, home care organizations and nursing homes. The response rate was 82.0%; 78.1% (1179) were suitable for analysis. The results show that in about half of the cases (55.8%) nurses were involved in the decision making by the physician and that nurses were frequently (81.5%) involved in administering the medication. The authors' conclusion is that alleviation of pain and symptoms with a life-shortening intention represents a ;grey' area, in which physicians and nurses act on the basis of personal ethical norms rather than legal rules, professional guidelines or shared moral values.

Dutch nurses' attitudes towards euthanasia and physician-assisted suicide.

This article presents the attitudes of nurses towards three issues concerning their role in euthanasia and physician-assisted suicide. A questionnaire survey was conducted with 1509 nurses who were employed in hospitals, home care organizations and nursing homes. The study was conducted in the Netherlands between January 2001 and August 2004. The results show that less than half (45%) of nurses would be willing to serve on committees reviewing cases of euthanasia and physician-assisted suicide. More than half of the nurses (58.2%) found it too far-reaching to oblige physicians to consult a nurse in the decision-making process. The majority of the nurses stated that preparing euthanatics (62.9%) and inserting an infusion needle to administer the euthanatics (54.1%) should not be accepted as nursing tasks. The findings are discussed in the context of common practices and policies in the Netherlands, and a recommendation is made not to include these three issues in new regulations on the role of nurses in euthanasia and physician-assisted suicide.

[Results of a study on fatigue in breast cancer patients receiving adjuvant chemotherapy: the first four days after treatment are the worst]. / Ergebnisse einer Untersuchung von Fatigue bei Brustkrebspatientinnen mit adjuvanter Chemotherapie: Die ersten vier Tage nach dem Zyklus sind am belastendsten.

A large number of breast cancer patients receiving adjuvant chemotherapy is suffering from fatigue. Until now there has been a lack of knowledge concerning the course of fatigue in breast cancer patients between two cycles of adjuvant chemotherapy. Therefore a prospective cohort study was conducted including 151 breast cancer patients from six hospitals in The Netherlands. The object of the study was to investigate the course of fatigue between the third and the fourth cycles of adjuvant chemotherapy, and to prove whether that course is influenced by different chemotherapy schedules. The patients were treated either with a doxorubicin containing schedule (21 or 28 days) or with a combination of cyclophosphamide, methotrexate, and 5-fluorouracil (CMF, 28 days). To assess fatigue patients were asked to write a diary cotaining the Shortened Fatigue Questionnaire (SFQ) from the beginning of the third cycle to the start of the fourth one. All days after completion of the third chemotherapy treatment were analysed. The main hypothesis to be tested was that the maximum fatigue level occurs in the first four days after treatment. Results revealed a chaotic pattern of fatigue between both cycles of chemotherapy in each of the treatment group. Smooth (splines) curves showed an average highest level of fatigue on day 3 post treatment. For the regimens with 28-days-intervalls another peak of fatigue was registered on day 11. A significant larger number of patients experienced maximum fatigue levels before day 5. The course of fatigue in the CMF group was significantly different compared with both doxorubicin groups. Women of the CMF group experienced lower fatigue peaks than patients of other groups. The results confirm the main hypothesis. The first days after treatment with chemotherapy are the worst ones for breast cancer patients. The course of fatigue is significantly related to the type of chemotherapy. Knowing these effects patients can better prepare oneself and their daily living for the time of adjuvant chemotherapy.

Migraine and chronic daily headache management: implications for primary care practitioners.

AIMS AND OBJECTIVES: The aim of this paper is to outline the classifications of migraine and chronic daily headaches (i.e. headaches occurring at more than 15 days per month) and briefly describe their epidemiology and management. After outlining the patients' management behaviours, this review paper discuss the implications for primary care practitioners, including general practitioners and nurses. Finally the paper sets out current resources for headache education for healthcare practitioners. BACKGROUND: There is a scarcity of recent literature about migraine and chronic daily headache in primary care and of the evidence base for best practice. Patients with migraine and headache may see a variety of healthcare professionals and may not always be accessing the best sources of help. METHODS: Various databases were searched, such as CINAHL, Cochrane, Medline, MedlinePubmed and the BMJ. In addition, manual searches were conducted by following on cited references from papers read. RESULTS: The results of the literature reviews were critically read and evaluated by the team and the results are discussed in the critical review presented in this paper. RELEVANCE TO CLINICAL PRACTICE: The paper proposes multidisciplinary working in relation to migraine and headache management in primary healthcare, using an evidence-based approach that stresses the importance of making the correct diagnosis, patient focused management and appropriate referrals to appropriate agencies to maximize benefits for patients.

Supporting stroke patients' autonomy during rehabilitation.

In a qualitative study, 22 stroke patients undergoing rehabilitation in three nursing homes were interviewed about constraints on and improvements in their autonomy and about approaches of health professionals regarding autonomy. The data were analysed using grounded theory, with a particular focus on the process of regaining autonomy. An approach by the health professionals that was responsive to changes in the patients' autonomy was found to be helpful for restoration of their autonomy. Two patterns in health professionals' approach appeared to be facilitatory: (1) from full support on admission through moderate support and supervision, to reduced supervision at discharge; and (2) from paternalism on admission through partial paternalism (regarding treatment) to shared decision making at discharge. The approach experienced by the patients did not always match their desires regarding their autonomy. Support and supervision were reduced over time, but paternalism was often continued too long. Additionally, the patients experienced a lack of information. Tailoring interventions to patients' progress in autonomy would stimulate their active participation in rehabilitation and in decision making, and would improve patients' preparation for autonomous living after discharge.

Development and preliminary psychometric testing of the Multidimensional Assessment of Pain Scale: MAPS.

BACKGROUND: This study aimed to test the preliminary psychometric properties of the Multidimensional Assessment Pain Scale (MAPS), a clinical instrument developed for assessing postoperative pain in critically ill preverbal children. METHODS: The MAPS was developed using pain indicators observed in postoperative critically ill infants. Content validity was established by a panel of experts. The scale was tested for validity and reliability in 43 postoperative children aged 0-31 months admitted to the pediatric intensive care units of two tertiary referral hospitals. Pain was measured concurrently by three independent assessors using the MAPS, the Face, Leg, Activity, Cry, and Consolability scale (FLACC) and the Visual Analog Scale (VAS) to assess concurrent and convergent validity. RESULTS: Internal consistency was moderate (r = 0.68). Interrater reliability of the MAPS was good (kappa: 0.68-0.84) for all categories and moderate for breathing pattern (kappa = 0.54). Excellent interrater reliability was shown for total MAPS (intraclass correlation 0.91). Agreement measurements between MAPS and FLACC, and MAPS and VAS showed that the risk of measurement error was small. CONCLUSION: Although initial psychometric testing of the MAPS shows promising results, the tool requires further psychometric testing, including responsiveness to analgesic effect (currently in progress).

Euthanasia and physician-assisted suicide in the Dutch homecare sector: the role of the district nurse.

AIM: This paper is a report of the findings of a study into the role of district nurses in euthanasia and physician-assisted suicide in homecare organizations, conducted as part of a study into the role of nurses in medical end-of-life decisions. 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 into the role of nurses in medical end-of-life decisions in hospitals, nursing homes and homecare organizations. This is the first quantitative study from the perspective of nurses. Previous quantitative studies were conducted under physicians and information on the role of nurses was obtained indirectly. METHOD: A questionnaire was sent in 2003 to 500 district nurses employed in 55 homecare organizations. The absolute response rate was 86.0% and 81.6% (408) could be used for analysis. RESULTS: In 22.3% of 278 cases, the district nurse was the first with whom patients discussed their request for euthanasia or physician-assisted suicide. In about half (49.8%) of 267 cases nurses were not involved in the general practitioner's decision-making process, and in only 13.3% of 264 cases, did they attend the administration of the lethal drugs. District nurses had provided some degree of aftercare to the surviving relatives in 80.3% of 264 cases. CONCLUSION: Collaboration between general practitioners and district nurses needs improvement, particularly in relation to decision-making. Our Dutch data could help nurses in other countries to define their (future) role in euthanasia and physician-assisted suicide.

Course of fatigue between two cycles of adjuvant chemotherapy in breast cancer patients.

The purpose of this study was to determine the course of fatigue in patients with breast cancer between 2 cycles of adjuvant chemotherapy, from the day of administration until the day of the next infusion. In a prospective cohort study, a sample of 151 patients with breast cancer receiving adjuvant chemotherapy was recruited from 6 hospitals in mainly the south of the Netherlands. Patients reported their experience of fatigue in a diary, the Shortened Fatigue Questionnaire, on a daily basis between the third and fourth treatment with adjuvant chemotherapy. Patients were treated with either a doxorubicin containing schedule or with cyclophosphamide, methotrexate, and 5-fluorouracil (CMF, 28 days). In the 28-day regimens, infusions were given on day 1 and day 8. The days after completion of the third and the start of the fourth treatment with chemotherapy were statistically analyzed. We tested the hypothesis that the maximum fatigue score occurs in the first 4 days after treatment. The mean age of the sample was 47.2 years (SD = 8.8). Most women (84%) were married or lived together with a partner. The majority (80%) of all patients had been diagnosed with stage II breast cancer. The division between mastectomies (47%) and lumpectomies (52%) was approximately equal. Sixty percent of the patients received radiotherapy before the third treatment with chemotherapy and/or in the period they kept the diary. A chaotic pattern of fatigue between the 2 cycles of chemotherapy emerged. Smooth (splines) curves showed an average highest level of fatigue on day 3 from the start. For the 28-day regimens, another distinct peak was seen around day 11. A relatively larger number of patients experienced peak fatigue levels before day 5. The course of fatigue in the CMF group was significantly different compared with the doxorubicin regimens. The fatigue peak in the CMF group was lower. Women taking cyclophosphamide orally experienced the peak level of fatigue significantly later. Influences of other variables were not observed in any chemotherapy group. Cancer-related fatigue has a chaotic nature. The first days after treatment with chemotherapy are the worst. The type of chemotherapy has a significant impact on the course of fatigue. Improved understanding of the nature and course of fatigue could equip healthcare providers better for informing patients about what they may expect. Future research should include interventions aimed at reducing or coping with fatigue.

Course of the fatigue dimension "activity level" and the interference of fatigue with daily living activities for patients with breast cancer receiving adjuvant chemotherapy.

The purpose of this study was to determine the course of the activity level, seen as a dimension of fatigue, as a function of chemotherapy within a breast cancer population receiving adjuvant chemotherapy. The second purpose of this study was to determine the course of the interference of fatigue, in general, with daily activities within a breast cancer population receiving adjuvant chemotherapy. 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 the last cycle of adjuvant chemotherapy. The chemotherapy was administered with either a doxorubicin-containing schedule or cyclophosphamide, methotrexate, and 5-fluorouracil. These 2 groups were compared. The activity level was measured by the Multidimensional Fatigue Inventory. A linear multilevel model was used to analyze the course. The revised Piper Fatigue Scale was used to examine the behavioral changes in the interference of fatigue with activities of daily living. A logistic multilevel model was used to analyze the course of this interference over time. The activity level seems to be rather stable during the treatment with chemotherapy. After the completion of chemotherapy, an improvement is observed. The activity levels reported at the first and the last measurement do not significantly differ. The course of the activity level is not affected by the type of chemotherapy regimen. Age, having children, and the stage of breast cancer turn out to be important determinants of the course of activity level. At all measurement occasions, women with a mastectomy were significantly more hampered in their activity level than women that had undergone a lumpectomy. The longer the duration of radiotherapy, the less active, and the longer the time interval between the last radiotherapy session and the measurement point, the more active patients were at that measurement point. A phenomenon not easy to explain is that the activity level in women who had received, in total, more chemotherapy treatments was significantly less diminished than those who had received fewer treatments. During the study period, in approximately 15% to 35% of the sample, fatigue interferes considerably with their daily living activities. Furthermore, the interference of fatigue with activities in daily life first increases after the start of chemotherapy and decreases after the completion of chemotherapy. Fatigue definitely affects the daily living activities of patients with breast cancer receiving adjuvant chemotherapy. With this knowledge, healthcare providers can inform patients on what they can expect. Further research should include the trajectory preceding chemotherapy and a healthy control group.

What is a good death? Terminally ill patients dealing with normative expectations around death and dying.

OBJECTIVE: Developing good care for dying people is important nowadays. Normative expectations about what could be considered as a good death are inextricably bound up with this issue. This article aims to offer an insight in the way terminally ill patients talk about death and dying and how they refer to current western normative expectations about a 'good' death. METHOD: Thirteen patients with a life expectancy of less than 3 months living at home were interviewed about how they experienced the last phase of their lives. The analysis focused on the way patients tell their personal stories by using normative expectations that are part of a broader cultural western framework. RESULTS: Five categories of normative expectations were discriminated in the stories of patients: awareness and acceptance, open communication, living one's life till the end, taking care of one's final responsibilities and dealing adequately with emotions. CONCLUSIONS: The results of this study show that in the search of a good death people show a clear diversity in their way of referring to as well as in dealing with normative expectations that are part of the current cultural paradigm. PRACTICE IMPLICATIONS: Professional caregivers should be responsive to how a patient deals with and relates to normative expectations about a good death and should support patients in their individual process of dying an 'appropriate death'.

Capturing postoperative pain responses in critically ill infants aged 0 to 9 months.

OBJECTIVES: The purpose of this study was to describe physiologic and behavioral pain behaviors in postoperative critically ill infants. A secondary aim was to identify how these pain responses vary over time. DESIGN: This observational study was conducted in the pediatric intensive care unit at two tertiary referral hospitals. Using ethological methods of observation, video recordings of postoperative infants were viewed to depict different situations of pain and no pain and were then coded using a reliable checklist. PATIENTS: A total of 803 recorded segments were generated from recordings of five critically ill infants aged between 0 and 9 months who had undergone major surgery. MEASUREMENTS AND MAIN RESULTS: There was an 82% agreement between the two coders. Multivariate analyses showed that physiologic responses differed only when adjusted for time. Significant decreases in systolic and diastolic arterial pressure (p < .001 and p = .036, respectively) were associated with postoperative pain exacerbated by painful procedures on day 2. On day 3, however, heart rate, arterial pressure (systolic, diastolic, and mean), and central venous pressure significantly increased (p < .05) in response to postoperative pain. Indicators included vertical stretch of the mouth, hand twitching, and jerky leg movements for postoperative pain and increase in respiratory distress, frown, eyes tightly closed, angular stretch of the mouth, silent or weak cry, jerky head movements, fist, pulling knees up, and spreading feet for postoperative pain exacerbated by painful stimuli. CONCLUSIONS: Findings support the ability to capture different intensities of postoperative pain in critically ill infants beyond neonatal age. These pain indicators can be used for the development of a pain assessment tool for this group of infants.

Pain in elderly people with severe dementia: a systematic review of behavioural pain assessment tools.

BACKGROUND: Pain is a common and major problem among nursing home residents. The prevalence of pain in elderly nursing home people is 40-80%, showing that they are at great risk of experiencing pain. Since assessment of pain is an important step towards the treatment of pain, there is a need for manageable, valid and reliable tools to assess pain in elderly people with dementia. METHODS: This systematic review identifies pain assessment scales for elderly people with severe dementia and evaluates the psychometric properties and clinical utility of these instruments. Relevant publications in English, German, French or Dutch, from 1988 to 2005, were identified by means of an extensive search strategy in Medline, Psychinfo and CINAHL, supplemented by screening citations and references. Quality judgement criteria were formulated and used to evaluate the psychometric aspects of the scales. RESULTS: Twenty-nine publications reporting on behavioural pain assessment instruments were selected for this review. Twelve observational pain assessment scales (DOLOPLUS2; ECPA; ECS; Observational Pain Behavior Tool; CNPI; PACSLAC; PAINAD; PADE; RaPID; Abbey Pain Scale; NOPPAIN; Pain assessment scale for use with cognitively impaired adults) were identified. Findings indicate that most observational scales are under development and show moderate psychometric qualities. CONCLUSION: Based on the psychometric qualities and criteria regarding sensitivity and clinical utility, we conclude that PACSLAC and DOLOPLUS2 are the most appropriate scales currently available. Further research should focus on improving these scales by further testing their validity, reliability and clinical utility.

Patients' management of migraine and chronic daily headache: a study of the members of the Migraine Action Association (United Kingdom).

BACKGROUND: Many strategies are available to treat and prevent migraine and chronic daily headache (CDH). Broadly these strategies can be divided into four groups, including (i) health care consultations, (ii) medication and alternative remedies, (iii) general (acute and prophylactic) strategies, and (iv) social support. OBJECTIVE: This study aimed to compare headache management between migraine (MO), migraine with aura (MA), and those with CDH over the last 12 months. DESIGN: A postal questionnaire was sent to 887 members of the Migraine Action Association (MAA). The response rate was 60.5% (n=537), and 438 questionnaires were included in the analysis. Migraine (n=117) and MA (n=239) patients were classed according to the International Headache Society (IHS). CDH (n=82) was diagnosed when respondents had 15 or more headache days per month. Descriptive tests, analysis of variances (ANOVAs), chi2, and Kruskal-Wallis tests were used for statistical analysis (P<.05). RESULTS: The three groups did not differ in age, gender, ethnicity, level of education, and employment status. Significant differences in management strategies between the groups were found in the number of respondents who had consulted headache specialists (P=.002) and neurologists (P=.004), the number and types of acute medications (eg, triptans, P=.002), the use of antidepressants (P=.004), and some acute and prophylactic avoidance techniques. Although, no significant differences between the groups were found in the use of other health professionals (eg, GP), alternative health professionals, general acute management, and the use of social support, they all actively used these strategies. CONCLUSIONS: The respondents of this study were active users of management strategies that are based on a combination of health care consultations, medication and alternative remedies, general management, and social support. In comparison to previous findings, the respondents in this study frequently reported higher use of management strategies (such as the use of triptans), which may be related to this group of patients being better informed about headache management than those with headache within the general population. Thus, the findings may not be representative for the general population, but they give an indication of the influence and importance of headache-related education carried out by patient organizations such as the MAA.

Migraine and chronic daily headache management: a qualitative study of patients' perceptions.

AIM: The aim of the study was to gain insight into the patients' perceptions of migraine and chronic daily headache (CDH) management. METHODS: Thirteen, semi-structured and individual interviews with seven migraine and five CDH patients were carried out and analysed in QSR NUD*IST5, using a grounded theory methodology. RESULTS: The participants described using five areas of management: 1) health care use; 2) medication use; 3) alternative therapies; 4) social support; and 5) lifestyle and self-help. The participants described their expectations, preferences, worries and (dis)satisfaction in relation to these five areas of management. The participants adapted headache management to suit their needs and preferences, making migraine and CDH management highly individual and giving the headache patient a central role within their own care. CONCLUSION: Health care is changing towards a greater involvement of the patients in their own care. Therefore, it is important to increase understanding of the patients' perspective of chronic diseases, including migraine and CDH. The results from this study inform health care professionals of the range of their patients' needs and preferences. This knowledge can be used to shape clinical practice, to develop patient education programmes and to further research efforts into issues that are important to the headache patient.

A pressure ulcer audit and feedback project across multi-hospital settings in the Netherlands.

OBJECTIVE: To examine whether participating in a pressure ulcer prevalence survey and receiving feedback results in an improvement in quality of care. DESIGN: Cross-sectional studies from 1998 to 2002 were compared over time. SETTING: Sixty-two acute care hospitals in the Netherlands. STUDY PARTICIPANTS: Patients hospitalized at the moment of the surveys. INTERVENTIONS: Each hospital was given hospital-specific performance data and national aggregate data, and peer comparisons to improve the quality of care. MAIN OUTCOME MEASURES: The case-mix-adjusted prevalence of pressure ulcers of grade >or=2, the percentage of high-risk patients receiving adequate prevention, and the total number of enabling conditions present were compared between successive surveys using multi-level analysis, in order to estimate a linear trend model and trend differences for each hospital. RESULTS: The case-mix-adjusted prevalence of pressure ulcers decreased over the 5-year period, while the percentage of patients receiving adequate prevention and the total number of enabling conditions present increased. The total number of enabling conditions had a significant effect on the decrease in case-mix-adjusted prevalence: more enabling conditions led to a lower case-mix-adjusted prevalence (chi(2) = 125; degrees of freedom = 1; P < 0.00). The percentage of patients receiving adequate prevention also had an effect on the change in case-mix-adjusted prevalence, with a higher percentage leading to a lower case-mix-adjusted prevalence. This effect, however, was not significant. CONCLUSIONS: Monitoring prevalence and giving feedback results in an improvement in quality of care in terms of pressure ulcer prevention. It is very important to continue conducting surveys to avoid attention moving away from this topic, which may in turn lead to a deterioration in the quality of pressure ulcer care. Further research to find the most effective feedback approach is needed.

The challenges of pain measurement in critically ill young children: a comprehensive review.

This article addresses the issues in measuring pain in critically ill children, provides a comprehensive review of the pain measures for children aged between 0 and 3 years, and discusses their applicability to this group of children. When children are critically ill, pain can only exacerbate the stress response that already exists, to the extent that homeostasis cannot be maintained. Severity of illness is thus likely to affect physiologic and behavioural pain responses that would normally be demonstrated in healthy children. The problem of differentiating pain from other constructs adds to the complexity of assessing pain in non-verbal children. A pain measure to be useful clinically must be adapted to the developmental age of the target population. Search of electronic databases and other electronic sources was supplemented by hand review of relevant journals to identify published and unpublished pain measures for use in children aged between 0 and 3 years. Twenty eight pain measures were identified in the literature; 11 for neonates only, 11 for children aged between 0 and 3 years, and six for children more than 12 months. These measures vary in relation to their psychometric properties, clinical utility and the context in which the study was performed. These measures may not be suitable for the critically ill young child, because the items included were derived from observations of healthy or moderately sick children, and may not reflect pain behaviour in those who are critically ill. It is therefore recommended to develop new pain scales for this population of compromised children.

Resident-oriented care in nursing homes: effects on nurses.

BACKGROUND: In a resident-oriented care model the assignment of patients to primary nurses takes place. These primary nurses are responsible for the total nursing care of their patients and make use of the nursing process. According to job demand-control models, these enlarged and enriched jobs can be described in terms of autonomy, job demands and social support, and the presence of these work characteristics has a positive influence on workers' psychological and behavioural outcomes. AIMS: This paper reports a study to investigate the extent to which the various features of resident-oriented care were implemented and its effects nurses' on work characteristics and on psychological and behavioural outcomes in three Dutch nursing homes. METHODS: In a quasi-experimental design, experimental and control groups were followed over 22 months, using a pretest and two post-tests with questionnaires, interviews and qualitative observations. RESULTS: The quantitative data showed significant increases in resident assignment, the two variables measuring the nursing process and, in the psycho-geriatric experimental group, on resident-oriented tasks. The qualitative data showed that a partly task-oriented division of labour was still used and that the planned delegation of coordination tasks to primary nurses was not fully achieved. Effects on work perceptions were limited. After implementation of the new system, the experimental group showed an increase in job autonomy. CONCLUSIONS: The intervention appeared to be only partly successful. Most of the expected results regarding work characteristics and psychological and behavioural outcomes did not materialize. Theoretical and methodological reflections are presented in the light of these findings.

The needs of terminally ill patients at home: directing one's life, health and things related to beloved others.

This article describes the results of a grounded theory study among terminally ill patients (with a life expectancy of less than three months) at home (n = 13, aged 39-83). The most commonly recurring theme identified in the analysis is 'directing', in the sense of directing a play. From the perspectives of patients in our study, 'directing' concerns three domains: 1) directing one's own life; 2) directing one's own health and health care; and 3) directing things related to beloved others (in the meaning of taking care of beloved ones). The patient's directing is affected by impeding and facilitating circumstances: the patient's needs and problems in the physical, psychological and existential/spiritual domain, and the support by family members and providers. Supporting patients and families, stimulating the patients' directing, giving attention to all domains of needs and counselling patients' families in the terminal phase are issues that need attention and warrant further investigation.