Advance care planning in the palliative phase of people with intellectual disabilities: analysis of medical files and interviews.

BACKGROUND: Advance care planning (ACP) is a process in which professionals, patients and their relatives discuss wishes and options for future care. ACP in the palliative phase reduces the chance that decisions have to be taken suddenly and can therefore improve the quality of life and death. The primary aim of this study is to explore how ACP takes place in cases of people with intellectual disabilities (ID). METHOD: Medical files were analysed, and interviews were held in six care organisations for people with mild to severe ID. The data concerned people with ID (n = 30), 15 in the palliative phase, identified using the 'surprise question', and 15 who had died after an identifiable period of illness. Additional pre-structured telephone interviews were conducted with their relatives (n = 30) and professionals (n = 33). RESULTS: For half of the people with ID who had died, the first report in their file about palliative care (needs) was less than 1 month before their death. Professionals stated that ACP was started in response to the person's deteriorating health situation. A do-not-attempt-resuscitation order was recorded for nearly all people with ID (93%). A smaller group also had other agreements between professionals and relatives documented in their files, mainly about potentially life-sustaining treatments (43%) and/or hospitalisation admissions (47%). Relatives and professionals are satisfied with the mutual cooperation in ACP in the palliative phase. Cognitive and communication disabilities were most frequently mentioned by relatives and professionals as reasons for not involving people with ID in ACP. CONCLUSIONS: Advance care planning in the palliative phase of people with ID focuses mainly on medical issues at the end of life. Specific challenges concern a proactive identification of changing needs, fear to initiate ACP discussions, documentation of ACP in medical files and the involvement of people with ID in ACP. It is recommended that relatives and professionals should be informed about the content of ACP and professionals should be trained in communicating in advance about wishes for future care.

Conservative care as a treatment option for patients aged 75 years and older with CKD stage V: a National survey in the Netherlands.

BACKGROUND AND OBJECTIVES: Conservative care for patients aged 75 years and older with CKD stage 5 as a treatment option besides dialysis was proposed officially in the Netherlands in October 2016. This national survey showed the current implementation of this option in Netherlands nephrology departments. DESIGN SETTING PARTICIPANTS AND MEASUREMENT: A web-based survey was sent to medical managers of 60 nephrology departments in the Netherlands in August 2016. RESULTS: Twenty-one medical managers (35%) completed the survey. The term "conservative care" is frequently used and well known. The estimated number of patients in whom the decision for maximal conservative care was made in 2015 was 310 of 2249 patients with CKD stage 5 age 75 years and older (range 5-50 patients per department). 164 patients became symptomatic and received no dialysis. There is no official registration for this treatment option and patient category. The practice patterns vary widely. Only one of 21 respondents reported a conservative care outpatient clinic. Formal training or education regarding conservative care is not available in most of departments. 95% of respondents discussed this treatment option with their patients. General practitioners are always being informed about their patient's decision. Their main role is providing or organizing palliative care support at the end of life and discussing advance care planning. Most respondents (86%) considered to include their patients in a prospective multicentre observational study, conservative care versus dialysis. CONCLUSIONS: Conservative care as a treatment option for patients with CKD stage 5 aged 75 years and older is well established. The practice patterns are varied in the Netherlands. Follow-up studies are needed to see whether the new multidisciplinary guideline facilitates harmonization of practice pattern. Funding is needed to optimize the implementation of conservative care.

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.

Nursing diagnoses in patients with leukemia.

PURPOSE: To identify and describe nursing diagnoses, their related factors, and defining characteristics, in hospitalized leukemia patients and to categorize these nursing diagnoses within Functional Health Patterns. METHODS: Content analysis of 15 nursing records and interviews with 7 oncology nurses working on a hematology/oncology ward in a University hospital in Maastricht, the Netherlands. FINDINGS: In the leukemia population, 47 nursing diagnoses with their associated characteristics were identified and classified within 10 Functional Health Patterns. Most of the nursing diagnoses were related to the Nutritional-Metabolic, the Cognitive-Perceptual, Activity-Exercise, the Role-Relationship, and the Coping-Stress-Tolerance patterns. CONCLUSIONS: Results describe the nursing care needs of patients with leukemia. Since the study used a small sample, results should be interpreted with caution. Further research is recommended.

Longitudinal study on quality of life and social support in cancer patients.

The aim of the present study is to acquire insight into the changes of quality of life, social networks, and social support of cancer patients during the first year after diagnosis, as well as into the relation between social support and the changes in quality of life. Newly diagnosed cancer patients (n = 51) were followed for 1 year. Semistructured personal interviews and questionnaires were used to gather data. On the average, patients' functioning improved and the amount of physical complaints decreased over the year. Psychological complaints and the global evaluation of life, however, did not change significantly over time. The patients were supported by small, dense networks, consisting mostly of family members. Size of the networks as well as the amount of emotional support showed some decrease over time. It appeared that emotional support was positively related to quality of life. Moreover, a tendency was found to indicate that patients with a deterioration in quality of life perceived a larger decrease in emotional support than patients with a positive course. The amount of perceived instrumental support did not change significantly. There is a tendency that patients who were functioning worse had a greater need for instrumental support. Although these findings indicate relations between types of support and quality of life, we cannot make statements on the causality of these relations.