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The Swedish fast-track diagnostic pathway was applied during 2017 for 146 patients with serious non-specific symptoms including weight loss, fatigue and anemia. Within five days all patients had a physical examination and a decision was made of radiologic investigations. The waiting time was short for e.g. CT-scan of the abdomen and thorax. A diagnosis of a malignant condition was made in 38 patients (26%) with a median age of 75 (48-91) years. There were 24 men and 14 women. Most common diagnoses were lung cancer and colorectal cancer. Hematologic malignancy was diagnosed in 8 patients. Stage IV disease occurred in 17 of the patients with carcinoma (57%). About 60 benign main diagnoses were made in 108 patients without malignant disease. Two of them have developed cancer during 2018 (breast cancer, pancreatic cancer).

Background and Aim: Endoscopic stents in the common bile duct is the first treatment choice to alleviate symptoms of biliary obstruction due to malignant disease. When endoscopic stenting fails in palliative patients, one option is to use a percutaneous transhepatic biliary drainage, but it is not clear whether and how it can reduce the symptom load. The aim of this study was to evaluate benefits and disadvantages of percutaneous transhepatic biliary drainage in palliative care. Material and Methods: Inclusion criteria were malignant disease and bilirubin ≥26 µmol/L in plasma. A structured protocol for obtaining data from the medical records was used. Data were collected from the time of last computed tomography scan before the percutaneous transhepatic biliary drainage was placed and during 14 days afterward. Results and Conclusion: Inclusion criteria were fulfilled in 140 patients. Median age was 70 years (33–91 years). Some 126 patients had a remaining external percutaneous transhepatic biliary drainage. Jaundice was the initial symptom in 62 patients (44%). Within the first week after percutaneous transhepatic biliary drainage, the bilirubin decreased from 237 µmol/L (31–634) to 180 µmol/L (17–545). Only 25% reached a level below the double upper reference value. Pruritus occurred in 27% before the percutaneous transhepatic biliary drainage, but the bilirubin value did not differ from patients without pruritus. However, the pruritus was relieved in 56% with percutaneous transhepatic biliary drainage. Antibiotic prophylaxis protected to some extent from infectious complications. Adverse events were common and early mortality was high (16% within 14 days). Jaundice should not by itself be an indication for percutaneous transhepatic biliary drainage for palliation except when the aim is to prepare the patient for chemotherapy. It is mandatory that the patients are informed carefully about what can be expected regarding the positive effects and the risks of adverse events.

Honest prognostication and information for patients are important parts of end-of-life care. This study examined whether an educational intervention could increase the proportion of patients who received information about the transition to end-of-life (ITEOL care).Two municipalities (in charge of nursing homes) and two hospitals were randomised to receive an interactive half-day course about ITEOL for physicians and nurses. The proportion of patients who received ITEOL was measured with data from the Swedish Register of Palliative Care (SRPC). Patients were only included if they died an expected death and maintained their ability to express their will until days or hours before their death. Four hospitals and four municipalities were assigned controls, matched by hospital size, population and proportion of patients receiving ITEOL at baseline.The proportion of patients in the intervention group who received ITEOL increased from 35.1% (during a 6-month period before the intervention) to 42% (during a 6-month period after the intervention). The proportion in the control group increased from 30.4% to 33.7%. The effect of the intervention was significant (p=0.005) in a multivariable model adjusted for time, age, gender and cause of death.More patients at end-of-life received ITEOL after an educative half-day intervention directed to physicians and nurses.

To date there has been a paucity of research examining whether a course in palliative care influences the clinical work. Therefore a half-day course was started for different professionals.The aims of this study were to quantitatively and qualitatively explore professionals' experience of the usefulness and importance of such a course.An evaluation study was used with two measurement points in the quantitative part; qualitative focus group interviews were conducted three times.Data was collected in Sweden through structured and open-ended questions (n=355) and in focus group discussions (n=40).The majority of participants were allied professionals (86%). Course evaluation immediately after the intervention showed high scores. At three months, 78% of the 86 participants who had cared for a dying patient since the course claimed that the course had been useful in their work. In addition, there were improvements regarding symptom management (37%), support to family members (36%), more frequent break point conversations (31%), and improved cooperation in the teams (26%). The qualitative analysis showed that the course made participants start to compare their own working experiences with the new knowledge. When returning to work, the participants feel strengthened by the the newly acquired knowledge, but the will to improve the care also led to frustration, as some of the participants described that they wanted to change routines in the care of the dying, but felt hindered.The course was appreciated and useful in the professionals' work, but it also created problems.

Background: The complexity of end-of-life care, represented by a large number of units caring for dying patients, different types of organizations and difficulties in identification and prognostication, signifies the importance of finding ways to measure the quality of end-of-life care. Aim: To establish, test and manage a national quality register for end-of-life care. Design: Two questionnaires were developed with an attempt to retrospectively identify important aspects of the care delivered during the last week in life. An internet-based IT platform was created, enabling the physician and/or nurse responsible for the care during the last week in life to register answers online. Setting: Units caring for dying people, such as hospital wards, home care units, palliative in-patient care units and nursing facilities. Results: The register received status as a National Quality Register in 2006. More than 30,000 deaths in nursing facilities, hospital wards, palliative in-patient units and private homes were registered during 2010, representing 34% of all deaths in Sweden and 58% of the cancer deaths. Conclusions: We have shown that it is feasible to establish a national quality register in end-of-life care and collect data through a web-based system. Ongoing data analyses will show in what way this initiative can lead to improved quality of life for patients and their families. There is an ongoing process internationally to define relevant outcome measures for quality of care at the end-of-life in different care settings; the registry has a potentially important role in this development.

The aim of this study was to contrast two opposed groups, namely palliative cancer patients who were suffering significant pain (VASor =4) and palliative cancer patients with no pain (VAS = 0) in hospital-based home care and, retrospectively, to study possible differences in relation to demographic, biological and treatment factors. The ESAS (Edmonton Symptom Assessment Scale) was used to assess 191 palliative cancer patients on admission and after 1 week of home care. Fifty-two (27%) had pain (mean 5.5+/-1.7) and 72 (38%) had no pain on admission [the middle group (n=67) had VAS 1-3]. Activity was more severely affected (5.4 vs 4.2, p0.01) and nausea less well controlled in patients with pain (2.3 vs 0.7, P0.0001). Pain was associated with the diagnosis of prostate cancer (P0.01) and the presence of skeletal metastases (P0.001), whereas pain-free patients, with or without analgesics, more often had colorectal cancer (P0.01) or melanoma (P0.05). The medication profiles differed between the two groups: 22 (42%) of the 52 patients with pain were on step 3 of the WHO analgesic ladder and 24 of 51 (47%) were receiving antiemetics, whereas 42 (58%) of the 72 patients with no current pain had no analgesic prescribed and only 25% of them had antiemetics prescribed, indicating biological differences. If pain was present on admission a pain analysis was formally documented in 23 (44%) of the 52 cases and the medication was changed in 27 of the 52 (52%). The patients improved after 1 week (5.4+/-1.6 vs 3.9+/-2.3, P0.001), and the improvement was significant even when a pain analysis was not documented or when medication was not changed. In conclusion, the results of this study indicate biological differences in pain alleviation and the need for a more structured way of working.

Quality in health care is important to measure and palliative care is no exception. The Swedish Register of Palliative Care (SRPC) is a national quality register that focuses on the last week of life. It collects data with an end-of-life questionnaire (ELQ), which is validated in this study.This study included 169 consecutive patients who had died at a palliative unit. That unit had developed a computerized end-of-life medical record module that enabled a comparison between reported data and medical records, illustrating the validity of the registry questionnaire. The paper versions of the ELQs filled in at the unit were also inspected to determine the extent of registration mistakes when completing the web questionnaire.Data from the medical records and data from the ELQs reported to the SRPC showed a congruity of 22 to 100%. A working limit of acceptable congruity was set to 80%. Eight questions fell below that line. Some of these differences were caused by systematic errors. The paper versions filled in at the unit and the data from the ELQs reported to the SRPC had a congruity of between 96% and 100%, with the exception of one question about pain evaluation, which had 91% congruity.The results in this study will be used to improve and further develop the register. Some questions need to be more specific to promote more valid registrations. Consensus on quality issues in end-of-life care would simplify the work of writing and answering the questionnaire. It is desirable to perform a similar study at hospital wards that do not specialize in palliative care; however, the anticipated lack of palliative documentation could make such a study difficult to perform.

The aim of this study was to identify patients in need of palliative care in 11 different care units with a total of 256 beds at Linkoping University Hospital and to look at their overall situation with respect to assessed symptom control and quality of life. There were 46 patients fulfilling the two criteria of incurable cancer and need for palliative care, and each was assessed with the aid of a questionnaire (five oral questions on life situation) and a single visual analogue scale (VAS) about their overall quality of life (QoL). Each patient also assessed him- or herself on the Edmonton Symptom Assessment Scale (ESAS). Total ESAS scores ranged from 20 to 639 mm (median 211). Median VAS scores (100 mm = greatest symptom severity) were as follows: nausea 6 mm, pain 9 mm, anxiety 17 mm, depression 18 mm, drowsiness 35 mm, activity 38 mm, appetite 45 mm, and sensation of well-being 46 mm. The median score for QoL was 47 and correlated well with the total ESAS score. Thirty-seven patients answered the open question "What in your current situation troubles you the most?". Seven patients answered "nothing", and 10 said "the present symptoms". Twenty patients had different concerns (existential, social, and psychological). The low number of hospitalised patients found reflects a well-functioning hospital-based home-care unit. Reduced appetite, sensation of well-being and activity were dominant, while pain and nausea were less intense. The simple QoL-VAS seemed to be comparable to ESAS, which is more useful for assessing each single symptom. The non-physical dimensions need more attention in the future in order to achieve totally satisfactory palliative care.