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Objective: To assess well-being and unmet needs among participants, and examine differences between patients and their next of kin.

Subjects: Cancer patients pre-adjuvant chemotherapy (n = 231) in rural northern Sweden, and their next of kin (n = 204).

Methods: Well-being and unmet needs were assessed using the Edmonton Symptom Assessment System (ESAS), Functional Assessment of Cancer Therapy–General (FACT-G), Functional Assessment of Chronic Illness Therapy–Spiritual Well-Being Scale (FACIT-Sp-12), Hospital Anxiety and Depression Scale (HADS), and Cancer Survivors' (Partners') Unmet Needs measure (CaSUN)/(CaSPUN). Descriptive methods summarized sociodemographic, cancer-specific, and psychosocial data. Non-parametric statistical tests examined the differences between patients and next of kin.

Results: The HADS indicated that one-quarter of patients and one-third of next of kin possibly/probably had anxiety, and one-seventh of participants possibly/probably had depression. One-third of participants experienced no/minimal impact of cancer on well-being. The CaSUN identified unmet needs in all domains, but mostly in information and psychosocial domains. At least 15% of patients/next of kin reported unmet needs in 12/26 items. For most items, next of kin reported unmet needs at a similar/higher frequency than patients (10–25%).

Conclusion: These findings underscore the importance of assessing well-being and rehabilitative needs in patients and their next of kin before chemotherapy, to identify those who may benefit from early professional support.

The European Council, the World Health Organization, the International Association of Hospice and Palliative Care, and various other national guidelines emphasize equal provision of palliative care. To fulfill this vision, all involved need to be aware of the existing situation even in western European countries. Data from the European Atlas of Palliative Care and the Swedish Registry of Palliative Care are used to illustrate the present inequalities. The data illustrate the unequal provision of palliative care relating to level of care, place of residence, diagnoses, and age. The challenge of providing equal palliative care remains, even in Western European countries, in spite of all positive developments. Different approaches that may contribute to successful implementation of equal palliative care are discussed. The challenge is still there and will require some effort to resolve.

Background: Amyotrophic lateral sclerosis (ALS) is a fatal disease requiring palliative care. End‐of‐life care has been well studied in patients with incurable cancer, but less is known about the quality of such care for patients with ALS.

Aim: To study whether the quality of end‐of‐life care the last week in life for patients dying from ALS differed compared to patients with cancer in terms of registered symptoms, symptom management, and communication.

Design: This retrospective comparative registry study used data from the Swedish Registry of Palliative Care for 2012–2016. Each patient with ALS (n = 825) was matched to 4 patients with cancer (n = 3,300).

Results: Between‐group differences in assessments for pain and other symptoms were significant (p < 0.01), and patients with ALS had fewer as‐needed injection drugs prescribed than patients with cancer. Patients with ALS also had dyspnea and anxiety significantly more often than patients with cancer. There was no significant difference in communication about transition to end‐of‐life care between the two groups. Patients dying from ALS received artificial nutrition on their last day of life significantly more often than patients with cancer.

Conclusions: The results indicate that patients with ALS receive poorer end‐of‐life care than patients dying from cancer in terms of validated symptom assessments, prescription of as‐needed drugs, and timely cessation of artificial nutrition. Educational efforts seem needed to facilitate equal care of dying patients, regardless of diagnosis.

Background/Aim: Previous studies have shown discrepancies between patient's desired and actual death place. As planning of family support and involvement of palliative home care teams seem to improve the chance to meet patients preferences, geographical availability of specialized palliative home care could influence place of death.

Patients and Methods: Data of patients diagnosed and deceased between January 2011 until December 2014 with lung, brain, colorectal, breast and prostate cancer was collected from Swedish national registers and multiple regression analyses were performed.

Results: Patients with lung, brain, colorectal, and prostate cancer who resided in rural municipalities had a higher likelihood of dying at home than dying in hospital settings, compared to those who lived in urban areas.

Conclusion: Patients in Sweden, with the exception of breast cancer patients, have a higher likelihood of home death than inpatient hospital death when residing in rural areas compared to when residing in urban areas.

Aim: We explored physicians' experiences of communicating with families when their child had cancer and a cure was no longer an option, by focusing on barriers and facilitating factors.

Methods: Physicians from the six cancer centres in Sweden took part in focus group discussions between December 2017 and May 2018, and the data were analysed using qualitative content analysis. Focus groups enabled us to gather individual and shared perspectives.

Results: The 35 physicians (20 male) had a mean age of 47 (range 31-74) and a mean of 11 years' experience in oncology, ranging from under one year to 43 years. They reported communication challenges when a cure was not possible, namely: emotional and mental drain, lack of mutual understanding and uncertainty about communication skills. They also reported facilitating factors: flexibility in complex conversations, the child's position in the conversations, continuity and trusting relationships, support from colleagues and having discussed the potentially life-threatening nature of cancer from the very start of treatment.

Conclusion: Training to overcome communication issues could support the early integration of palliative care.

The aim of this study was to explore palliative home care physicians' experiences regarding end-of-life breakpoint communication (BPC). This is a qualitative study where focus group interviews were conducted and analysed using qualitative content analysis. The results show that the participants saw themselves as being responsible for accomplishing BPC, and they were convinced that it should be regarded as a process of communication initiated at an early stage, i.e. proactively. However, BPC was often conducted as a reaction to the patient's sudden deterioration or sometimes not at all. The barriers to achieving proactive BPC included physicians' uncertainty regarding the timing of BPC, primarily due to difficulties in prognostication in terms of time of death, and uncertainty as to what BPC should include and how it should best be approached. Furthermore, there was insufficient documentation regarding previous BPC, which impeded proactive BPC. Although our study shows that physicians are ambitious when it comes to the communication of information to patients and families, there is a need for further training in how to conduct BPC and when to initiate the BPC process. Furthermore, there should be documentation that different professionals can access as this would appear to facilitate a proactive BPC process.

Introduction Amongst patients with incurable cancer approaching death, cachexia is common and associated with adverse outcomes. The term cachexia lacks a universally accepted definition and there is no consensus regarding which variables are to be measured. Furthermore, an elevated C-reactive protein is a common clinical challenge in this patient group. This study aims to add to the ongoing discussion regarding the definition of cancer cachexia and to study the role of C-reactive protein and s-albumin in this context.

Material and methods A 1-year cohort, consisting of 155 cancer patients enrolled in a specialized palliative home care team in the city of Ostersund, Sweden, that were deceased during the year of 2015 was studied. Laboratory measures were studied within 0-30 and 31-60 days prior to death. C-reactive protein >10 mg/L and coinciding s-albumin <30 g/L was referred to as "laboratory cachexia". Also, the number of days from the first found "laboratory cachexia" until death was noted.

Results The prevalence of "laboratory cachexia" was 85% 0-30 days prior to death compared to 66% 31-60 days prior to death (p<0.01). The majority of patients (75%) had an onset of "laboratory cachexia" within 0-120 days prior to death, with a median of 47 days. The median values for C-reactive protein and s-albumin within 0-30 days prior to death were 84mg/L and 23g/L respectively.

Discussion Could markedly deranged values of C-reactive protein and s-albumin, such as found in this study, signal a relatively short remaining survival time in patients with incurable cancer and no clinical signs of ongoing infection? The role of "laboratory cachexia" in this context as well as the cut off values for the laboratory measures included may be further discussed.

Introduction: The Swedish Register of Palliative Care (SRPC) is a national quality register that collects data about end-of-life care from healthcare providers that care for dying patients. Data are used for quality control and research. Data are mainly collected with an end-of-life questionnaire (ELQ), which is completed by healthcare staff after the death of a patient. A previous validity assessment of the ELQ showed insufficient validity in some items including symptom relief. The aim of this study was to examine the validity of the revised ELQ. Materials and methods: Data from 100 consecutive patients' medical records at two specialised palliative care units were used to complete new ELQs, which were then compared to the ELQ registrations from the SRPC for the same patients. The level of agreement was calculated for each ELQ item. To account for the possibility of the agreement occurring by chance, Cohen's kappa was calculated for suitable items. To examine the extent of registration mistakes when transferring the paper form to the web, the original paper versions of the ELQ filled out at the units were compared to data from the ELQs reported to the SRPC. Results: Level of agreement between ELQ registrations from the SRPC and the new ELQs based on the medical records varied between 0.55 and 1.00, where 24 items showed level of agreement above 0.80 and 9 items showed level of agreement below 0.80. Cohen's kappa with 95% confidence intervals was calculated for 24 items. The kappa values showed that two items had poor agreement, four fair agreement, 11 moderate agreement, five good agreement and two very good agreement. The level of agreement varied between 0.93 and 1.00 when comparing the ELQ registrations in the SRPC and the paper forms. Conclusion: The revised ELQ contains more items with high levels of agreement between registrations in the SRPC and notes in the patients' medical records when compared to the previous version. Validating issues around symptom assessment remains a challenge in our model of quality assessment.

Access to palliative care is unequally distributed across Sweden and thus does not meet the needs. The holistic perspective of palliative care is sometimes contrasted with the usual medical focus on organ failure and disease. Palliative consultation teams provide specialist palliative care competencies for staff caring for patients in primary care, nursing homes and in hospitals. Efforts to increase knowledge and skills in palliative care is needed at undergraduate university level and through postgraduate and specialist training. Well organized cooperation between municipalities, county councils and primary care is crucial for patients in the final stages of life.