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Objectives: This study aimed to describe palliative medicine physicians' experiences performing pain assessment using the Numeric Rating Scale (NRS) - one of the most widely used pain assessment tools - for patients with cancer receiving specialised palliative care.

Study design: This qualitative study used reflexive thematic analysis.

Setting: The study was conducted in specialised palliative care settings.

Participants: Semi-structured interviews were conducted with 14 palliative medicine physicians in specialised palliative care.

Analysis: The interviews were transcribed and analysed using reflexive thematic analysis.

Results: Four themes were identified: 'Striving to create a shared understanding',  'Meeting individual needs', 'Interpreting and managing ratings' and 'Importance of organizational structures'. This can be seen as a process that moves from creating a shared foundation through individual patient meetings and handling NRS ratings to organisational-level challenges.

Conclusions: The study shows the complexity needed within palliative cancer care when using the most common pain assessment tool in Sweden, the NRS. The tool may seem simplistic, but, as shown in this study, the physicians found interpreting the assessments challenging for the whole team. This complexity should be incorporated into future healthcare education and training within the palliative care area, where patients often have chronic pain conditions in combination with cognitive impairment. Future research needs to focus on developing reliable pain assessment methods for patients who are cognitively impaired because of the cancer.

Background: Despite dementia being a leading cause of death and clinical guidelines recommending palliative care, substantial gaps in care quality for this population have previously been shown. This study aimed to investigate and compare the quality of end-of-life (EOL) care provided to individuals with and without dementia in different settings.

Methods: In this registry-based study, patients registered in the Swedish Register of Palliative Care (SRPC) between 2011 and 2020 were cross-referenced with patients in the Swedish registry for cognitive/dementia disorders (SveDem). For each patient with dementia registered in SveDem (n = 39 712), two controls without dementia matched by year of birth and gender were selected from the SRPC (n = 79 336). Quality indicators in the SRPC were analyzed by group (dementia/controls) and by place of death, separately, using the chi-squared test. Multiple logistic regression analyses were conducted to examine the association between the quality indicators and having a diagnosis of dementia or not, overall and in different settings.

Results: Individuals with dementia were more likely to have staff or family members present at death, to receive documented decisions to shift to EOL care, have symptom assessments made the final week of life and prescription of injectables. However, they were less likely to express preferences for place of death and to be informed about EOL care transitions, especially in hospitals without specialized palliative care.

Conclusions: In this study, individuals with dementia received higher quality EOL care in several domains compared with those without dementia. However, they were less likely to have expressed preferences for place of death. These findings highlight the need for early, proactive care planning to align care with patient preferences and avoid potentially non-beneficial actions.

BACKGROUND: In Europe, residential care homes (RCHs) rather than hospitals are the most common care facilities for the older adult and the place where most deaths occur in this age group. There is a lack of knowledge regarding end-of-life (EOL) discussions and how they correlate with symptoms and symptom relief.

OBJECTIVE: The aim was to examine the correlation between EOL discussions and symptom occurrence, symptom relief and prescriptions or PRN drugs against symptoms for care home residents.

METHODS: All expected deaths at RCHs from 1 October 2015 to 31 December 2016 and registered in the Swedish Register of Palliative Care were included. Univariate and multivariate logistic regression were used to compare the RCH residents, or their family members, who had received documented EOL discussions with a physician (the EOL discussion group) and the non-EOL discussion group.

RESULTS: The EOL discussion group (n=17 071) had a higher prevalence of pain, nausea, anxiety, death rattles and shortness of breath reported, compared with the non-EOL discussion group (n=4164). Those with symptoms were more often completely relieved and had more often been prescribed PRN drugs against that symptom in the EOL discussion group. All differences remained significant when adjusting for age, time living in unit and cause of death.

CONCLUSION: The results indicate that EOL discussions are correlated with higher prevalence of symptoms, but also with better symptom relief and prescription of symptom drugs PRN when symptomatic. A possible explanation for this is that the EOL discussion can work as an opportunity to discuss symptoms and treatment for symptom relief.

Background: Despite pain control being a top priority in end-of-life care, pain continues to be a troublesome symptom and comprehensive data on pain prevalence and pain relief in patients with different diagnoses are scarce.

Methods: The Swedish Register of Palliative Care (SRPC) was used to retrieve data from 2011 to 2022 about pain during the last week of life. Data were collected regarding occurrence of pain, whether pain was relieved and occurrence of severe pain, to examine if pain differed between patients with cancer, heart failure, chronic obstructive pulmonary disease (COPD) and dementia. Binary logistic regression models adjusted for sex and age were used.

Results: A total of 315 000 patients were included in the study. Pain during the last week of life was more commonly seen in cancer (81%) than in dementia (69%), heart failure (68%) or COPD (57%), also when controlled for age and sex, p < 0.001. Severe forms of pain were registered in 35% in patients with cancer, and in 17–21% in non-cancer patients. Complete pain relief (regardless of pain intensity) was achieved in 73–87% of those who experienced pain, depending on diagnosis. The proportion of patients with complete or partial pain relief was 99.8% for the whole group.

Conclusions: The occurrence of pain, including severe pain, was less common in patients with heart failure, COPD or dementia, compared to patients with cancer. Compared with cancer, pain was more often fully relieved for patients with dementia, but less often in heart failure and COPD. As severe pain was seen in about a third of the cancer patients, the study still underlines the need for better pain management in the imminently dying.

Context: Clinically assisted hydration during end-of-life care among patients with cancer is controversial; practice varies between clinical settings and countries, and there is a lack of evidence.

Objectives: To examine whether breathlessness, respiratory secretion, or confusion correlates with receiving parenteral hydration during end of life, adjusted for sex, age, and place of death.

Methods: The Swedish Register of Palliative Care database was used to collect data about the usage of parenteral hydration during the last day of life, and the occurrence of three symptoms during the last week. Adults dying from cancer during 2011–2021 in hospitals, in residential care homes, and within specialized palliative care were included. Correlation between parenteral hydration and symptoms was examined using χ²-test and logistic regression.

Results: A total of 147,488 patients were included in the study. Parenteral hydration was more often prescribed to younger persons, to men, and in acute hospitals (compared to other settings), p < 0.001 in all three comparisons. Patients with hematological malignancies (20%) and ovarian cancer (16%) were most likely to receive parenteral hydration, while those with brain tumors (6%) were least likely. The presence of all three analyzed symptoms during the last week (breathlessness, respiratory secretion, and confusion) were significantly correlated with having received parenteral hydration during the last day of life (p < 0.001). In the final logistic regression model adjusted for age, sex, and place of death, the only symptom with remaining correlation to parenteral hydration was breathlessness (OR 1.56, 95% CI 1.50–1.6).

Conclusion: There is an association between parenteral hydration and increased breathlessness in patients with cancer. Provision of parenteral hydration is more prevalent in men, younger patients, and those with hematological malignancies or ovarian cancer, and most widespread in acute hospital settings.

Objectives: Symptom management and support of the family members (FMs) are consideredessential aspects of palliative care. During end of life, patients are often not able to self-reportsymptoms. There is little knowledge in the literature of how healthcare professionals(HCPs) assess symptoms compared with FMs.The objective was to compare the assessment ofsymptoms and symptom relief during the final week of life between what was reported by FMsand what was reported by HCPs.

Methods: Data from the Swedish Register of Palliative Care from 2021 and 2022 were usedto compare congruity of the assessments by the FMs and by HCPs regarding occurrence and reliefof three symptoms (pain, anxiety and confusion), using Cohen’s kappa.

Results: A total of 1131 patients were included. The agreement between FMs and HCPs was poorfor occurrence of pain and confusion (kappa 0.25 and 0.16), but fair for occurrence of anxiety(kappa 0.30). When agreeing on a symptom being present, agreement on relief of thatsymptom was poor (kappa 0.04 for pain, 0.10 for anxiety and 0.01 for confusion). The trendwas that HCPs more often rated occurrence of pain and anxiety, less often occurrence ofconfusion and more often complete symptom relief compared with the FMs.

Conclusions: The views of FMs and HCPs of the patients’ symptoms differ in the end-of-life context, but both report important information and their symptom assessments should beconsidered both together and individually. More communication between HCPs and FMs couldprobably bridge some of these differences.

Background: The Abbey Pain Scale (APS), an observational scale used to assess pain in people with end-stage dementia, is also widely used in Sweden to assess pain in patients with advanced cancer. It is unclear whether the APS is appropriate in this context. This study aims to explore physicians’ and nurses’ experiences of using a Swedish translation of the APS (the APS-SE) in people with advanced cancer.

Methods: Conventional qualitative content analysis was used to analyse interviews with physicians (n = 6) and nurses (n = 6) working in oncology and specialised palliative care about their experiences of using the APS-SE.

Results: Three categories were created: fills a need, not always on target, and does not fully suit the clinical situation. Participants reported that although the APS-SE provides support in a challenging situation, it sometimes misses the mark: it does not distinguish well between pain and other types of suffering and its pain score tends not to reflect professionals’ intuitive perceptions of patients’ suffering. Some parts of the APS-SE were not considered useful, and others were perceived as ethically questionable.

Conclusion: Health professionals greatly need an observational pain assessment tool for people with advanced cancer. The APS-SE is helpful in this context, but participants did not perceive it as ideal. Its problems seem inherent to the original APS rather than related to its translation from English to Swedish. Further research is needed to provide a more suitable pain assessment tool for patients with advanced cancer.

Objective: Little is known to what extent access to specialist palliative care (SPC) for cancer patients dying with coronavirus disease-2019 (COVID-19) affects the occurrence of breakthrough symptoms, symptom relief, and overall care, compared to hospital deaths. Our aim was to include patients with both COVID-19 and cancer and compare those dying in hospitals with those dying in SPC with reference to the quality of end-of-life care.

Methods: Patients with both cancer and COVID-19 who died in hospitals (n = 430) and within SPC (n = 384) were identified from the Swedish Register of Palliative Care. The hospital and SPC groups were compared regarding the quality of end-of-life care, including the occurrence of 6 breakthrough symptoms during the last week in life, symptom relief, end-of-life care decisions, information, support, and human presence at death.

Results: Breakthrough of breathlessness was more common in the hospital patients compared to the SPC patients (61% and 39%, respectively; p <.001), while pain was less common (65% and 78%, respectively; p <.001). Breakthrough of nausea, anxiety, respiratory secretions, or confusion did not differ. All 6 symptoms, except for confusion, were more often completely relieved in SPC (p =.014 to p <.001 in different comparisons). In SPC, a documented decision about the goal being end-of-life care and information about this were more common than in hospitals (p <.001). Also, to have family members present at the time of death and for family members to be offered a follow-up talk afterward was more common in SPC (p <.001).

Conclusion: More systematic palliative care routines may be an important factor for better symptom control and higher quality of end-of-life care in hospitals.

Background: Patients with advanced cancer can be unable to verbalize their pain. The Abbey Pain Scale (APS), an observational tool, is used to assess pain in this setting, but has never been psychometrically tested for people with cancer. The aim of this study was to assess the validity, reliability, and the responsiveness of the APS to opioids for patients with advanced cancer in a palliative oncology care setting.

Material and Methods: Patients with advanced cancer and poor performance status, drowsiness, unconsciousness, or delirium, were assessed for pain using a Swedish translation of the APS (APS-SE) and, if possible, the Numeric Rating Scale (NRS). The assessments using APS were conducted simultaneously, but independently, by the same raters on two separate occasions, approximately one hour apart. Criterion validity was assessed by comparing the APS and NRS values using Cohen’s kappa (κ). Inter-rater reliability was determined using the intraclass correlation coefficient (ICC), internal consistency using Cronbach’s α, and responsiveness to opioids using the Wilcoxon signed-rank test.

Results: Seventy-two patients were included, of whom n = 45 could rate their pain using the NRS. The APS did not detect any of the n = 22 cases of moderate or severe pain self-reported using the NRS. The APS at first assessment had a κ of 0.08 (CI: −0.06 to 0.22) for criterion validity, an ICC of 0.64 (CI: 0.43–0.78) for inter-rater reliability, and a Cronbach’s α of 0.01 for internal consistency. The responsiveness to opioids was z = −2.53 (p = 0.01).

Conclusion: The APS was responsive to opioids but displayed insufficient validity and reliability and did not detect moderate or severe pain as indicated by the NRS. The study showed a very limited clinical use of the APS in patients with advanced cancer.

Aim: To translate and culturally adapt the APS for people with end-stage dementia in various care settings in Sweden and to investigate factors important for clinical implementation.

Design: Qualitative study design with interviews with care staff.

Methods: After an initial discussion of concepts, the Abbey Pain Scale was translated into Swedish and back into English to check for accuracy. The resulting Swedish version was then revised and culturally adapted through a series of interviews with nursing assistants, nurses and physicians (n = 11) to develop the final Swedish version.

Results: A Swedish version of the Abbey Pain Scale was developed. The instrument was considered straightforward and easy to use, but needed adjustments to make it more comprehensible to staff with less education in health care or with other first languages than Swedish. It was found important to carefully introduce new staff members to the instrument, to ensure they understand all the words and items.