Palliative care needs in hospitalized cancer patients: a 5-year follow-up study.

PURPOSE: The aims of this study were to describe and compare diagnoses, symptoms, and care needs in palliative cancer patients in two medium-sized hospitals in a county council with no specialized palliative care available 24/7; to analyze the relationships between diagnosis and symptoms/care needs; and to compare results and trends from two datasets (from 2007 and 2012). METHODS: The study was population-based with a cross-sectional design and was conducted at two acute care hospitals. We performed 142 one-day inventories (n = 2972) in 2007 and 139 in 2012 (n = 2843) to register symptoms, care needs, and diagnosis based on a questionnaire. Multiple logistic regression models were used in the analysis. RESULTS: During 2007 and 2012 combined, 10% (n = 589) of hospitalized patients were assessed as having cancer in a palliative phase. Prostate (12%) and colorectal (12%) cancers were most common. Pain (42%) and deterioration (42%) were the most prevalent symptoms and were associated with pancreas cancer in our regression models (p = 0.003 and p = 0.019, respectively). Other cancers had different associations: hematologic malignancies were associated with infections and blood transfusions (p < 0.001), breast cancer with pleurocentesis (p = 0.002), and stomach/esophagus cancer with nausea (p < 0.001). Nausea was more common in women than in men (p < 0.01). The mean number of symptoms/care needs was 2.9; patients with stomach/esophagus cancer had the highest number of symptoms/care needs (3.5). CONCLUSIONS: Acute care hospitals still play an important role for patients requiring palliative care. Symptoms and care needs were not strongly associated with specific diagnoses. Therefore, symptoms, rather than the specific cancer diagnoses, should be the focus of care.

Evaluation of a Continuing Educational Intervention for Primary Health Care Professionals about Nutritional Care of Patients at Home.

OBJECTIVE: Evaluate the effectiveness of a continuing educational intervention on primary health care professionals' familiarity with information important to nutritional care in a palliative phase, their collaboration with other caregivers, and their level of knowledge about important aspects of nutritional care. DESIGN: Observational cohort study. SETTING: 10 primary health care centers in Stockholm County, Sweden. PARTICIPANTS: 140 district nurses/registered nurses and general practitioners/physicians working with home care. INTERVENTION: 87 professionals participated in the intervention group (IG) and 53 in the control group (CG). The intervention consisted of a web-based program offering factual knowledge; a practical exercise linking existing and new knowledge, abilities, and skills; and a case seminar facilitating reflection. MEASUREMENTS: The intervention's effects were measured by a computer-based study-specific questionnaire before and after the intervention, which took approximately 1 month. The CG completed the questionnaire twice (1 month between response occasions). The intervention effects, odds ratios, were estimated by an ordinal logistic regression. RESULTS: In the intra-group analyses, statistically significant changes occurred in the IG's responses to 28 of 32 items and the CG's responses to 4 of 32 items. In the inter-group analyses, statistically significant effects occurred in 20 of 32 statements: all 14 statements that assessed familiarity with important concepts and all 4 statements about collaboration with other caregivers but only 2 of the 14 statements concerning level of knowledge. The intervention effect varied between 2.5 and 12.0. CONCLUSION: The intervention was effective in increasing familiarity with information important to nutritional care in a palliative phase and collaboration with other caregivers, both of which may create prerequisites for better nutritional care. However, the intervention needs to be revised to better increase the professionals' level of knowledge about important aspects of nutritional care.

A randomized, dose-response, multicenter phase II study of radium-223 chloride for the palliation of painful bone metastases in patients with castration-resistant prostate cancer.

PURPOSE: To investigate the dose-response relationship and pain-relieving effect of radium-223, a highly bone-targeted alpha-pharmaceutical. METHODS: One hundred patients with castration-resistant prostate cancer (CRPC) and painful bone metastases were randomized to a single intravenous dose of 5, 25, 50 or 100 k Bq/kg radium-223. The primary end-point was pain index (visual analogue scale [VAS] and analgesic use), also used to classify patients as responders or non-responders. RESULTS: A significant dose response for pain index was seen at week 2 (P = .035). At week 8 there were 40%, 63%, 56% and 71% pain responders (reduced pain and stable analgesic consumption) in the 5, 25, 50 and 100 k Bq/kg groups, respectively. On the daily VAS, at week 8, pain decreased by a mean of -30, -31, -27 and -28 mm, respectively (P = .008, P = .0005, P = .002, and P < . 0001) in these responders (post-hoc analysis). There was also a significant improvement in the brief pain inventory functional index for all dose-groups (P = .04, .01, .002 and .02, Wilcoxon signed rank test). Furthermore, a decrease in bone alkaline phosphatase in the highest dose-group was demonstrated (P = .0067). All doses were safe and well tolerated. CONCLUSION: Pain response was seen in up to 71% of the patients with a dose response observed 2 weeks after administration. The highly tolerable side-effect profile of radium-223 previously reported was confirmed.

The existential impact of starting corticosteroid treatment as symptom control in advanced metastatic cancer.

Treatment with corticosteroids often results in increased appetite, reduced nausea and improved well-being in patients with advanced metastatic cancer. Therefore, we have studied the existential impact of starting corticosteroid treatment as symptom control in this patient group using qualitative content analysis with both a descriptive and an interpretative focus. Ten patients were interviewed before and after 1 week of treatment with 4 mg betamethasone. Prior to treatment, patients reported distressing symptoms, deterioration and diminished autonomy, symbolising threat and death. Corticosteroid treatment produced symptom relief in the majority of the patients. They reported enhanced physical abilities and experienced feelings of a more normalized life and strengthened autonomy, symbolising health and hope. This transfer from threat to hope has important existential consequences in end-of-life care and should be addressed when communicating goals of treatment and care with the patient and family.

What to do when 'there is nothing more to do'? A study within a salutogenic framework of family members' experience of palliative home care staff.

The aim of this study was to develop a theoretical framework of family members' experience of palliative home care staff based on a secondary analysis of four previous studies. A salutogenic framework was used, i.e. with the origin of health in focus. Data had been collected (semi-structured tape-recorded interviews and postal questionnaires with open-ended questions) from 469 family members of mainly cancer patients referred to advanced palliative home care. Walker and Avant's strategies for theory construction were used. The secondary analysis generated three theoretical blocks: (1) general components of staff input (including five generalized resistance resources (GRRs): competence, support, spectrum of services, continuity, and accessibility); (2) specific interactions with staff (including two GRRs: being in the centre and sharing caring); (3) emotional and existential consequences of staff support (including six health-disease continuums: security-insecurity, hope-hopelessness, congruent inner reality-chaos, togetherness-isolation, self-transcendence-feelings of insufficiency and retained everyday life-disrupted everyday life). It seems important that all three aspects of family members' experience of palliative care staff are to be considered in evaluations of palliative care, in goal-setting and in teaching role models. The study is specific to the Swedish model of palliative home care and replication of the work in other countries is recommended.

Support group for cancer patients. Does it improve their physical and psychological wellbeing? A pilot study.

In order to evaluate a structured support intervention programme, symptoms and quality of life (QOL) were studied in 61 consecutive cancer patients with different tumour diagnoses in relation to intervention and follow-up. The majority of the patients were female. The Edmonton symptom assessment scale (ESAS), the Norwegian fatigue questionnaire and the hospital anxiety and depression scale (HADS) were used. Data were analysed according to ANOVA and Tukey's honest significant difference (HSD) test. ESAS sickness score (P=0.0001), depression (P=0.0001), anxiety (P=0.0001) and QOL (P=0.0009) improved and the improvements in depression and anxiety were still significant after 3 months (P=0.02 respectively). Aspects of fatigue also improved significantly in 7 of 11 questions after the intervention (P< or =0.04) but these improvements were not observed after 3 months. Anxiety according to the HADS questionnaire improved significantly after the intervention (P=0.0006). The majority of the patients highly appreciated the possibility of sharing thoughts and troubles with others with similar experiences (59%). The programme was therefore found to improve QOL, and physical and psychological functions. Randomized studies in relation to immunological changes and follow-up are in progress.

Predictive factors for home deaths among cancer patients in Swedish palliative home care.

Five palliative home care teams participated in a prospective Swedish study that included 221 palliative cancer patients. All patients with incurable malignant disease that were admitted and died during 1999 were included. On admission, demographic data were recorded. When patients, despite ongoing home care, were referred to institutional care, doctors and nurses involved were interviewed about the reasons for this. After the patients' death next of kin involved in the care were interviewed according to a questionnaire. Approximately half of the patients died at home. The reasons for referral showed a wide diversity and included both social and psychosocial factors, medical emergencies and problems related to symptom control. A preference for dying at home and not living alone were shown to be the strongest predictors of home death (p = 0.001). However, 35% of patients living alone died at home. Interestingly enough, Karnofsky performance index (KPI) at admission was significantly lower for those dying at home, despite similar mean time of care. The understanding of impending death was significantly more common among the families of those patients dying at home.

Staff opinions about the leadership and organisation of municipal dementia care.

The present study describes the opinions of experienced staff providing direct care to patients with dementia in municipal units in Sweden. The focus is mainly on leadership and other organisational factors. A purposeful sample of 31 staff members employed in municipal dementia care in both urban and rural areas in mid-Sweden were selected. Data were collected within a qualitative paradigm using semi-structured interviews which were tape-recorded and analysed using a modified phenomenographical approach. The nearly unanimous opinions of the interviewees indicated that there was a great lack of daily leadership in the units. Thus, few units had clearly formulated goals and few had regular care planning for their residents. Poorly developed teamwork was reported in the care of people with dementia especially regarding doctors, whose visits to the unit were too infrequent and too short, and did not include a direct exchange of information with other staff. In addition, little or no staff education and guidance/supervision was provided on a regular basis. In conclusion, without any unreasonable increase in cost, measures such as introducing clear leadership at the care unit level, concentrating on multi-professional teamwork, and providing education and guidance/supervision to the staff would probably result in better care for patients with dementia and their families.

Spiritual thoughts, coping and 'sense of coherence' in brain tumour patients and their spouses.

When a person is diagnosed with a life-threatening disease, existential questions are easily triggered. The aims of this study were to explore to what extent brain tumour patients and their next of kin were able to cope, understand and create meaning in their situation, to explore whether spirituality could be supportive and to analyse whether these concepts are related to Antonovsky's concept of sense of coherence. Using a purposive sampling technique, 20 patients and 16 of their next of kin took part in tape-recorded interviews. A content and context analysis was performed using a hermeneutic approach. We found that comprehensibility was to a large extent constructed by the patient's own thoughts and theories, despite an insecure situation. Manageability was achieved by active information-seeking strategies, by social support and by coping, including positive reinterpretation of the situation. Meaningfulness was central for quality of life and was created by close relations and faith, as well as by work. A crucial factor was whether the person had a 'fighting spirit' that motivated him or her to go on. As only three patients were believers, trust in God had generally been replaced by a belief and confidence in oneself, in science, in positive thinking and by closeness to nature. Sense of coherence as a concept can explain how exposed persons handle their situation. In its construction, sence of coherence integrates essential parts of the stress/coping model (comprehensibility, manageability) and of spirituality (meaning).

Existential support in brain tumour patients and their spouses.

UNLABELLED: Caring for patients with brain tumours raises existential questions. The aims of this study were to describe the opinions of nurses, patients and next-of-kin on existential support and how this is prioritised. PATIENTS AND METHOD: a total of 20 brain tumour patients, 16 family members and 16 nurses underwent explorative, tape-recorded, semi-structured interviews about existential issues. RESULTS: the nurses' opinions about the importance and prioritisation of existential support could be divided into four main groups: 1) religion, 2) "a diffuse picture", 3) conversation, and 4) questions of vital importance. They generally had a favourable attitude towards existential issues but thought those issues were difficult to deal with in practice due to lack of time, lack of knowledge and fear. Without exception, patients and family members were satisfied with the medical and physical treatment, but not with the existential support. They had, to a great extent, wished for existential support, and especially for the opportunity of talking about the existential threat that had arisen. Obstacles to this were thought to be due to the staff being under much stress, being afraid and unskilled. The importance of closeness and presence, which decreased existential isolation, was emphasised.

Symptom assessment in advanced palliative home care for cancer patients using the ESAS: clinical aspects.

UNLABELLED: Four hundred and thirty-one cancer patients were assessed with the ESAS and a VAS-QoL at admission to Hospital-based home care (HBHC) and subsequently. RESULTS: Pain and nausea were well-controlled (mean 2.5 and 1.8) whereas patients were less satisfied with appetite, activity and sense of well-being. Dyspnoea and anxiety (lung cancer, p<0.001 and p<0.01) and pain (prostate cancer, p<0.01), were related to diagnosis while activity, drowsiness, appetite and well-being to survival (p<0.05 to p<0.001). The correlations between individual symptoms and well-being were low (0.2-0.5), whereas the correlation between well-being and the Symptom Distress Score (SDS) was 0.76. "Well-being" was a better word to use than QoL. DISCUSSION: ESAS is useful in HBHC and data show that symptoms other than merely pain and nausea are of importance. As the global measurement (one VAS) of well-being has a high correlation with SDS, this single measurement may be clinically adequate for quality assurance of symptom control in dying cancer patients.

Receiving bad news: experiences of family members.

UNLABELLED: Little is known about how next-of-kin experience receiving bad news. The aim of this study was to explore the experiences of family members when receiving information about ending tumour treatment, with a focus on their role in this context. METHODS: Semi-structured interviews were performed and analyzed using a qualitative phenomenographic method. RESULTS: Twenty family members of patients with incurable progressive cancer admitted to hospital-based home care were included in the study. Data showed that family members want to protect, represent, or act on behalf of the patient. Some described themselves as assuming prominent roles: the demander-of-truth role, the secret-keeper role, and the controller role. Others assumed more passive roles: the surrendering role, the considerate listener role, and the excluded outsider role. CONCLUSION: This study has revealed possible-explanations as to why family members are dissatisfied with information. The results of this study may help doctors in clinical practice recognize the different types of behaviour family members exhibit when receiving bad news.

Breaking bad news in the transition from curative to palliative cancer care--patient's view of the doctor giving the information.

In the transition from curative to palliative cancer care, communication is of special importance. The aim of this study was to explore how patients with a disseminated cancer disease experienced the information about their incurable state, focusing on the physician. The persons taking part were 30 patients admitted to a hospital-based home care unit in Sweden. Semi-structured interviews were conducted and analysed using a qualitative method. All patients described their doctors as experts, despite different qualities. Six subcategories were identified: (1) the inexperienced messenger, (2) the emotionally burdened, (3) the rough and ready expert (4) the benevolent but tactless expert, (5) the "distanced" doctor and (6), the empathic professional. The relationship was described as very important to the patients' capacity to handle the information and was felt to have been built up during earlier meetings. The relationship was described in four subcategories: personal between well-acquainted individuals, impersonal between unacquainted individuals, personal between unacquainted individuals and impersonal between well-acquainted individuals. Both the character of the physician and his or her ability to create personal relationships influence patients' capacity to cope with this specific situation. Education and guidance are needed both in clinical practice and in medical schools.

Brain tumours in Sweden 1996: care and costs.

OBJECTIVES: Brain tumours cause considerable concern due to a high mortality and there are increasing efforts to provide adequate care, sometimes outside hospitals. Health care utilisation, direct costs of care, and the indirect social cost of morbidity and early mortality caused by brain tumours in Sweden in the year 1996 was analysed. METHODS: Quantification of ambulatory care, care in hospital, long term and palliative/terminal care, drug consumption, temporary as well as long term morbidity, and mortality from comprehensive national data sources. Direct costs were calculated using 1996 charges. Indirect costs were calculated by sex and age specific salaries. A sensitivity analysis considered the impact of alternative estimates of each item. RESULTS: Indirect costs were 75% of the total and were caused mainly by early mortality. Direct costs were predominantly for care in hospital, long term care, and home health care. Among direct costs, astrocytomas III-IV and meningiomas accounted for 42% and 30% respectively. CONCLUSIONS: The cost of illness from brain tumours reflects the characteristics of these malignancies. Despite their low incidence rate, the economic impact caused by high mortality among young persons is a predominant trait. Costs of acute hospital care and also long term care and home care are considerable.

89Strontium in the management of painful sceletal metastases.

PURPOSE: To make a review of the literature of 89strontium-chloride and a retrospective study of time to palliative intended external irradiation, number of portals and overall-survival after 89strontium-chloride therapy. RESULTS: In total 93 patients were treated 116 times with 89strontium. The patients with prostatic carcinoma received 91% of all 89strontium therapies. Median over-all survival was 10 months after injection. In those cases when 89strontium was given before palliative radiotherapy, the average of total number of local fields was significantly lower (1.1 versus 4.1) compared to those cases where local fields preceded 89strontium therapy. However, time to 89new external irradiation after 89strontium injection was equal between these groups (3.8 versus 2.9 months). CONCLUSION: A review of literature conclude that 89strontium is effective for the reduction of pain originating from osteoblastic metastases. It also reduce the need for external radiotherapy and therefore is cost-effective. However, 89strontium is more effective in an early phase of the metastatic disease and preferably as an adjuvance to external radiotherapy.

[Quality of life is the most important goal of nutritional support of the dying]. / Livskvalitet viktigaste målet i nutritionsbehandling av döende.

In early palliative stages effective nutrition can improve well-being. In late stages and in dying patients excessive amounts of proteins and lipids may induce nausea and vomiting, due to cachexia and subsequent changes in the metabolism. Excessive hydration may give rise to oedema and dyspnoea. In these late stages the patient rarely feels hungry or thirsty. The goal should therefore be to do good, not to harm and to respect the autonomy of the patient. Thus, the well-being of the patient should be in focus: to avoid hunger, thirst, nausea, vomiting, oedemas and dyspnoea. The consequences are that small amounts of carbohydrates and water often constitute the optimum for these patients.