'Someone must do it': multiple views on family's role in end-of-life care - an international qualitative study.

Background: Family is a crucial social institution in end-of-life care. Family caregivers are encouraged to take on more responsibility at different times during the illness, providing personal and medical care. Unpaid work can be overburdening, with women often spending more time in care work than men. Objectives: This study explored multiple views on the family's role in end-of-life care from a critical perspective and a relational autonomy lens, considering gender in a socio-cultural context and applying a relational autonomy framework. It explored patients, relatives and healthcare providers' points of view. Design: This qualitative study was part of the iLIVE project, involving patients with incurable diseases, their relatives and health carers from hospital and non-hospital sites. Methods: Individual interviews of at least five patients, five relatives and five healthcare providers in each of the 10 participating countries using a semi-structured interview guide based on Giger-Davidhizar-Haff's model for cultural assessment in end-of-life care. Thematic analysis was performed initially within each country and across the complete dataset. Data sources, including researchers' field notes, were translated into English for international collaborative analysis. Results: We conducted 158 interviews (57 patients, 48 relatives and 53 healthcare providers). After collaborative analysis, five themes were identified across the countries: family as a finite care resource, families' active role in decision-making, open communication with the family, care burden and socio-cultural mandates. Families were crucial for providing informal care during severe illness, often acting as the only resource. Patients acknowledged the strain on carers, leading to a conceptual model highlighting socio-cultural influences, relational autonomy, care burden and feminisation of care. Conclusion: Society, health teams and family systems still need to better support the role of family caregivers described across countries. The model implies that family roles in end-of-life care balance relational autonomy with socio-cultural values. Real-world end-of-life scenarios do not occur in a wholly individualistic, closed-off atmosphere but in an interpersonal setting. Gender is often prominent, but normative ideas influence the decisions and actions of all involved.

Dealing With Temporality in Patients With Life-Limiting Disease: An International Qualitative Study.

The prospect of death influences people's thoughts about and how they deal with their remaining time. We aimed to understand whether patients with progressive, life-limiting diseases are oriented in the past, present, or future and how they deal with temporality. We conducted 57 in-depth interviews with end-of-life patients in 10 countries using thematic analysis at three levels (i.e., locally in three countries, with codes shared in the three-country subgroup, and in all 10 countries with a codebook that we developed). We found that the patients' thoughts were oriented toward all three time levels (i.e., past, present, and future). Complementing these levels, we identified another, namely, the future after death. Each time level included patients actively and passively dealing with their thoughts. Past themes were remorse and regret, nostalgia, and coming to terms with past choices; present themes were feeling grateful for being alive, a time for farewells, and living for the day; future themes were worries about the future, to miss out, hope, ideas about death and dying, and planning the near future; and future after death themes were not being there, worries about loved ones, and preparations for a future after death. A changed view on lifetime and avoidance of thinking about a certain time level related to several time levels, while desire to die fluctuated between levels and between acting on and feeling about it. Living for the day, worries about the future, and worries about the well-being of loved ones were common themes in all countries.

Nurses' experiences of using the Integrated Palliative care Outcome Scale with patients in specialized palliative care-A qualitative focus group study.

AIM: To explore nurses' experiences of using the Integrated Palliative care Outcome Scale (IPOS) as a communication tool in specialized palliative care. DESIGN: This study employed a qualitative inductive approach. The Standards for Reporting Qualitative Research were followed for reporting. METHODS: Five focus groups were conducted with nurses from four specialized palliative care units, and the discussions were analysed with quality content analysis. RESULTS: Using IPOS for communication with the patient gave an opportunity to understand the patient's care needs and to let these care needs guide care interventions. Prerequisites in terms of relation, atmosphere, skills and flexibility were needed to establish an interactive communication. It was challenging to communicate about issues that evoked emotional reactions in the patient. There was a balancing act between the use of a structured scale and overcoming communication challenges. Nonetheless, when the two complemented each other, IPOS was a useful tool for nurses to promote person-centred care.

Increased patient satisfaction by integration of palliative care into geriatrics-A prospective cohort study.

BACKGROUND: Integration of oncology and palliative care has been shown to increase quality of life in advanced disease. To meet the needs of the growing older population, integration of palliative care and geriatrics has been proposed but scarcely described. OBJECTIVES: The aim of this study was to integrate palliative care into geriatrics by a structured care guide, the Swedish Palliative Care Guide, and to evaluate its effect on patient satisfaction, health-related quality of life and symptom burden, compared to a control group. METHODS: Geriatric in-patients over 65 years of age were included in the study, those with cognitive impairment were excluded. Data was collected before (baseline) and after the implementation (intervention) of the Swedish Palliative Care Guide. Patient satisfaction was evaluated two weeks after discharge with questions from a national patient survey. Health-related quality of life was measured with EQ-5D-3L and symptom burden with Edmonton Symptom Assessment Scale. RESULTS: In total, 400 patients were included, 200 in the baseline- and intervention group, respectively. Mean age was 83 years in both groups. Patient satisfaction was significantly higher in nine out of ten questions (p = 0.02-<0.001) in the intervention group compared to baseline. No differences between the groups were seen in health-related quality of life or symptom burden. CONCLUSION: A significant effect on patient satisfaction was seen after implementation of the Swedish Palliative Care Guide in geriatric care. Thus, integration of palliative care and geriatrics could be of substantial benefit in the growing population of older adults with multimorbidity and frailty.

Striving towards normality in an unpredictable situation. A qualitative interview study of how persons newly diagnosed with incurable oesophageal and gastric cancer manage everyday life.

PURPOSE: Getting an incurable oesophageal or gastric cancer diagnosis is a major stressful life event associated with severe physical, psychosocial and existential challenges. To provide timely and efficient support, based on patients' experiences, the aim of the study was to explore how patients newly diagnosed with incurable oesophageal and gastric cancer manage everyday life. METHOD: Semi-structured interviews were conducted with 12 patients 1-3 months after being diagnosed with incurable oesophageal or gastric cancer. Four participants were interviewed twice, which resulted in 16 interviews. Data were analysed with qualitative content analysis. RESULTS: An overall theme, "Striving towards normality in an unpredictable situation", with three related themes - "Trying to comprehend the disease", "Dealing with the consequences of illness" and "Re-evaluating what is important in everyday life" - and seven sub-themes were identified. The participants described an unexpected and unpredictable situation, in which they strived to maintain their normal life. Amidst struggling to manage problems related to eating, fatigue and an incurable diagnosis the participants talked about the importance of focusing on the positive and normal aspects of life. CONCLUSIONS: The findings in this study point to the importance of supporting patients' confidence and skills, particularly with regard to managing eating, so that they can hold on to their normal life as much as possible. The findings further point to the possible benefit of integrating an early palliative care approach and could provide guidance for nurses and other professionals on how to support patients post diagnosis.

Dying during the COVID-19 Pandemic in Sweden: Relatives' Experiences of End-of-Life Care (the CO-LIVE Study).

Background: The COVID-19 pandemic has seen many deaths, but the majority were for causes other than COVID-19. However, end-of-life care in all settings has been affected by measures limiting the spread of the virus, for patients with and without COVID-19. The Swedish coronavirus strategy was different compared to many other countries, which might have affected end-of-life care. The aim was to describe the experiences of end-of-life care for bereaved relatives in Sweden during the "first wave" and to compare the experiences for deaths due to COVID-19 with the experiences for deaths for other reasons. Methods: A random sample of addresses for 2400 people who died during March−September 2020 was retrieved from the Swedish Person Address Registry. Relatives were contacted with a questionnaire regarding their experience of end-of-life care, with a focus on communication, participation, and trust. Results: In total, 587 relatives (25% response rate) answered the questionnaire (14% COVID-19-deaths, 65% non-COVID-19-deaths, 21% uncertain). In the COVID-19 group 28% of the relatives were allowed visits without restrictions compared to 60% in the non-COVID-19 group (p < 0.01). Only 28% of the relatives in the COVID-19 group reported that the person received "enough care from physicians", significantly fewer than the non-COVID group (65%, p < 0.01). Conclusion: Relatives' experience of end-of-life care for persons with COVID-19 was significantly worse than relatives of persons without COVID-19, but relatives for persons without COVID-19 were also negatively affected.

Existential aspects documented in older people's patient records in the context of specialized palliative care: a retrospective review.

BACKGROUND: Documentation of older people's end-of-life care should cover the care given and provide an overview of their entire situation. Older people approaching the end of life often have complex symptoms, live with bodily losses, and face an unknown future in which existential aspects come to the forefront. Knowledge of the existential aspects recorded in palliative care documentation is sparse and merits improvement. This knowledge is relevant to the development of more holistic documentation and is necessary in order to promote reflection on and discussion of documentation of the sensitive existential considerations arising in palliative care. The aim of this study was to describe the documentation of existential aspects in the patient records of older people receiving specialized palliative care. METHODS: Data were obtained from a retrospective review of the free-text notes in 84 records of randomly selected patients aged ≥75 years enrolled in specialized palliative care units who died in 2017. The notes were analysed using an inductive qualitative content analysis. RESULTS: The notes documented existential aspects in terms of connotations of well-being and ill-being. Documented existential aspects were related to the patients' autonomy concerning loss of freedom and self-determination, social connectedness concerning loneliness and communion, emotional state concerning anxiety and inner peace, and state of being concerning despair and hope. The notes on existential aspects were, however, not recorded in a structured way and no care plans related to existential aspects were found. CONCLUSIONS: Existential aspects concerning both ill-being and well-being were sparsely and unsystematically documented in older people's patient records, but when notes were extracted from these records and analysed, patterns became evident. Existential aspects form an important basis for delivering person-centred palliative care. There is a need to develop structured documentation concerning existential aspects; otherwise, patients' thoughts and concerns may remain unknown to healthcare professionals.

Symptoms, problems and quality of life in patients newly diagnosed with oesophageal and gastric cancer - a comparative study of treatment strategy.

BACKGROUND: Patients with oesophageal and gastric cancer have a low likelihood of being cured and suffer from a broad spectrum of symptoms and problems that negatively affect their quality-of-life (QOL). Although the majority (67-75%) of patients at the time of diagnosis suffer from an incurable disease, research has primarily focused on the pre- and postoperative phase among patients treated with curative intent, with little attention to symptoms and problems in the diagnostic phase, especially in those who cannot be offered a cure. METHODS: In this cross-sectional study 158 patients newly diagnosed with oesophageal and gastric cancer visiting the surgical outpatient department for a preplanned care visit were included consecutively during 2018-2020. The validated instruments QLQ-C30 and QLQ-OG25, developed by the European Organization for Research and Treatment of Cancer (EORTC), and selected items from the Integrated Patient Outcome Scale (IPOS) were used to assess QOL, symptoms and problems. Differences between patients with a curative and a palliative treatment strategy were analysed using t-test and Mann-Whitney U test. The QLQ-C30 and QLQ-OG25 scores were compared to published reference data on the general Swedish population. RESULTS: Among all, the QOL was markedly lower, compared with general Swedish population (mean ± SD, 55.9 ± 24.7 vs 76.4 ± 22.8, p < 0.001). Compared to general population, the patients had significant impairment in all QOL aspects, particularly for role and emotional functioning and for symptoms such as eating-related problems, fatigue, insomnia and dyspnea. Majority of patients also reported severe anxiety among family and friends. Among patients with oesophageal cancer those with a palliative treatment strategy, compared with curative strategy, reported significantly lower QOL (mean ± SD, 50.8 ± 28.6 vs 62.0 ± 22.9 p = 0.030), physical (65.5 ± 22.6 vs 83.9 ± 16.5, p < 0.001) and role functioning (55.7 ± 36.6 vs 73.9 ± 33.3, p = 0.012), and a higher burden of several symptoms and problems. No significant differences between treatment groups were shown among patients with gastric cancer. CONCLUSIONS: Patients newly diagnosed with oesophageal and gastric cancer, and especially those with incurable oesophageal cancer, have a severely affected QOL and several burdensome symptoms and problems. To better address patients' needs, it seems important to integrate a palliative approach into oesophageal and gastric cancer care.

Similarities and differences between China and Sweden regarding the core features of palliative care for people aged 60 or older: a systematic scoping review.

BACKGROUND: Despite the increasing longevity of the world's population, with an unprecedented rise in the number of people who need palliative care (PC), there has been sparse research regarding palliative care for older people, especially when it comes to comparison of PC between healthcare systems and cultures. The aim of this systematic scoping review was to identify the characteristics of the body of literature and to examine the knowledge gaps concerning PC research for older people (> 60 years) in two healthcare systems and cultures, mainland China and Sweden. METHODS: The guidelines PRISMA (Preferred Reporting Items for Systematic Reviews), and PICOS (Patient/population, Intervention, Comparison/control, and Outcome) were used. Empirical studies on patients 60 years or older, next of kin or staff participating in a palliative care intervention or setting were included. They were conducted in mainland China or in Sweden during 2007-2019, were published in English and were extracted from seven databases: Embase, PubMed, Scopus, Cinahl, PsycInfo, Academic Search Complete and Cochrane Library. Two independent researchers conducted the selection of studies, data extraction and methodological evaluation. Any disagreements were resolved in consultation with a third researcher. The analysis was manifest directed content analysis based on PICOS domains. RESULTS: Of the 15 studies, four were from mainland China and 11 from Sweden. Both countries included older patients with cancer but also other end-stage diseases such as heart failure and dementia. The studies differed in design, method and the content of the interventions. The study in China based on traditional Chinese medicine concerns traditional Chinese folk music. The six qualitative studies from Sweden were evaluations of five interventions. CONCLUSIONS: Despite the high age of the participating patients, there was no focus on an ageing perspective concerning palliative care. To adapt to the changes taking place in most societies, future research should have increased focus on older persons' need for palliative care and should take account of issues concerning research ethics, ethnicity and culture. REGISTERED IN PROSPERO: CRD42020078685 , available from.

A novel care guide for personalised palliative care - a national initiative for improved quality of care.

BACKGROUND: Even when palliative care is an integrated part of the healthcare system, the quality is still substandard for many patients and often initiated too late. There is a lack of structured guidelines for identifying and caring for patients; in particular for those with early palliative care needs. A care guide can act as a compass for best practice and support the care of patients throughout their palliative trajectory. Such a guide should both meet the needs of health care professionals and patients and families, facilitating discussion around end-of-life decision-making and enabling them to plan for the remaining time in life. The aim of this article is to describe the development and pilot testing of a novel Swedish palliative care guide. METHODS: The Swedish Palliative Care Guide (S-PCG) was developed according to the Medical Research Council framework and based on national and international guidelines for good palliative care. An interdisciplinary national advisory committee of over 90 health care professionals together with patient, family and public representatives were engaged in the process. The feasibility was tested in three pilot studies in different care settings. RESULTS: After extensive multi-unit and interprofessional testing and evaluation, the S-PCG contains three parts that can be used independently to identify, assess, address, follow up, and document the individual symptoms and care-needs throughout the whole palliative care trajectory. The S-PCG can provide a comprehensive overview and shared understanding of the patients' needs and possibilities for ensuring optimal quality of life, the family included. CONCLUSIONS: Based on broad professional cooperation, patients and family participation and clinical testing, the S-PCG provides unique interprofessional guidance for assessment and holistic care of patients with palliative care needs, promotes support to the family, and when properly used supports high-quality personalised palliative care throughout the palliative trajectory. Future steps for the S-PCG, entails scientific evaluation of the clinical impact and effect of S-PCG in different care settings - including implementation, patient and family outcomes, and experiences of patient, family and personnel.

Sensations, symptoms, and then what? Early bodily experiences prior to diagnosis of lung cancer.

Lung cancer (LC) generally lacks unique core symptoms or signs. However, there are a multitude of bodily sensations that are often non-specific, not easily understood, and many times initially not recognized as indicative of LC by the affected person, which often leads to late diagnosis. In this international qualitative study, we inductively analyzed retrospective accounts of 61 people diagnosed with LC in Denmark, England and Sweden. Using the bodily sensations they most commonly spoke about (tiredness, breathlessness, pain, and cough), we constructed four sensation-based cases to understand the pre-diagnostic processes of reasoning and practice triggered by these key indicators of LC. We thereafter critically applied Hay's model of sensations to symptoms transformation, examining its central concepts of duration, disability and vulnerability, to support understanding of these processes. We found that while duration and disability are clearly relevant, vulnerability is more implicitly expressed in relation to perceived threat. Tiredness, even when of long duration and causing disability, was often related to normal aging, rather than a health threat. Regardless of duration, breathlessness was disturbing and threatening enough to lead to care-seeking. Pain varied by location, duration and degree of disability, and thus also varied in degree of threat perceived. Preconceived, but unmet expectations of what LC-related cough and pain would entail could cause delays by misleading participants; if cough lasted long enough, it could trigger health care contact. Duration, disability, and sense of threat, rather than vulnerability, were found to be relevant concepts for understanding the trajectory to diagnosis for LC among these participants. The process by which an individual, their family and health care providers legitimize sensations, allowing them to be seen as potential symptoms of disease, is also an essential, but varying part of the diagnostic processes described here.

Co-afflicted but invisible: A qualitative study of perceptions among informal caregivers in cancer care.

This article explores the lived experience of informal caregivers in cancer care, focusing on the perceived burden and needs of individuals seeking support from an informal group for next of kin. A total of 28 individuals who were closely related to a patient with cancer participated in focus group interviews. Three themes were identified: setting aside one's own needs, assuming the role of project manager, and losing one's sense of identity. Together they form the framing theme: being co-afflicted. The characteristics of informal caregivers are shown to be similar to those of people with codependency, motivating development of targeted interventions from this perspective.

Development of an international Core Outcome Set (COS) for best care for the dying person: study protocol.

BACKGROUND: In contrast to typical measures employed to assess outcomes in healthcare such as mortality or recovery rates, it is difficult to define which specific outcomes of care are the most important in caring for dying individuals. Despite a variety of tools employed to assess different dimensions of palliative care, there is no consensus on a set of core outcomes to be measured in the last days of life. In order to optimise decision making in clinical practice and comparability of interventional studies, we aim to identify and propose a set of core outcomes for the care of the dying person. METHODS: Following the COMET initiative approach, the proposed study will proceed through four stages to develop a set of core outcomes: In stage 1, a systematic review of the literature will identify outcomes measured in existing peer reviewed literature, as well as outcomes derived through qualitative studies. Grey literature, will also be included. Stage 2 will allow for the identification and determination of patient and proxy defined outcomes of care at the end of life via quantitative and qualitative methods at an international level. In stage 3, from a list of salient outcomes identified through stages 1 and 2, international experts, family members, patients, and patient advocates will be asked to score the importance of the preselected outcomes through a Delphi process. Stage 4 consists of a face-to-face consensus meeting of international experts and patient/family representatives in order to define, endorse, and propose the final Core Outcomes Set. DISCUSSION: Core Outcome Sets aim at promoting uniform assessment of care outcomes in clinical practice as well as research. If consistently employed, a robust set of core outcomes for the end of life, and specifically for the dying phase, defined by relevant stakeholders, can ultimately be translated into best care for the dying person. Patient care will be improved by allowing clinicians to choose effective and meaningful treatments, and research impact will be improved by employing internationally agreed clinically relevant endpoints and enabling accurate comparison between studies in systematic reviews and/or in meta-analyses.

Dying With Unrelieved Pain-Prescription of Opioids Is Not Enough.

CONTEXT: Fear of pain resonates with most people, in particular, in relation to dying. Despite this, there are still people dying with unrelieved pain. OBJECTIVES: We quantified the risk, and investigated risk factors, for dying with unrelieved pain in a nationwide observational cohort study. METHODS: Using data from Swedish Register of Palliative Care, we analyzed 161,762 expected deaths during 2011-2015. The investigated risk factors included cause of death, place of death, absence of an end-of-life (EoL) conversation, and lack of contact with pain management expertise. Modified Poisson regression models were fitted to estimate risk ratios (RRs) and 95% confidence intervals (CIs) for dying with unrelieved pain. RESULTS: Unrelieved pain during the final week of life was reported for 25% of the patients with pain, despite prescription of opioids PRN in 97% of cases. Unrelieved pain was common both among patients dying of cancer and of nonmalignant chronic diseases. Statistically significant risk factors for unrelieved pain included hospital death (RR = 1.84, 95% CI 1.79-1.88) compared with dying in specialist palliative care, absence of an EoL conversation (RR = 1.42, 95% CI 1.38-1.45), and dying of cancer in the bones (RR = 1.13, 95% CI 1.08-1.18) or lung (RR = 1.10, 95% CI 1.06-1.13) compared with nonmalignant causes. CONCLUSION: Despite almost complete prescription of opioids PRN for patients with pain, patients die with unrelieved pain. Health care providers, hospitals in particular, need to focus more on pain in dying patients. An EoL conversation is one achievable intervention.

Being acknowledged by others and bracketing negative thoughts and feelings: Frail older people's narrations of how existential loneliness is eased.

AIMS AND OBJECTIVES: The aim of this study was to describe how EL was eased, as narrated by frail older people. BACKGROUND: Existential loneliness (EL) is an unavoidable part of the human condition. It is a complex phenomenon that has been described as disconnection from life. If EL is acknowledged in the care of older people, the experience of EL can be reduced. DESIGN: In this qualitative study, we used an exploratory and descriptive design. METHODS: The study was based on 22 narrative interviews with frail older people, 76 to 101 years old, who were receiving long-term care and services. We analysed the data using conventional content analysis. RESULTS: Being acknowledged by others, that is, being the focus of others' concern, eased the experience of EL, as did encountering intimacy and having meaningful exchanges of thoughts and feelings. Further, EL was pushed into the background and eased when participants could bracket negative thoughts and feelings, that is, when they could adjust and accept the present situation, view life in the rear-view mirror, be in contact with spiritual dimensions and withdraw and distract themselves. CONCLUSION: Existential loneliness can be eased by experiencing meaningful togetherness with others and oneself when something else comes to the forefront, pushing EL to the background. Frail older peoples' opportunities to ease EL may be facilitated by health care staff (HCS) providing person-centred care and create possibilities for solitary time and meaningful togetherness. IMPLICATIONS FOR PRACTICE: If frail older people's ongoing processes of adjusting and accepting their situation are understood and confirmed by people in their environment, for example, by nurses, family and friends, the experience of living a meaningful life can be supported, which, in turn, can ease EL.

Qualitative cross-country comparison of whether, when and how people diagnosed with lung cancer talk about cigarette smoking in narrative interviews.

OBJECTIVES: To compare and examine whether, when and how patients with lung cancer in three countries, with different survival rates, talk about cigarette smoking and its relationship with help-seeking. DESIGN: A qualitative cross-country comparison with analysis of narrative interviews. SETTING: Participants in Sweden, Denmark and England were interviewed during 2015-2016. Interviews, using a narrative approach, were conducted in participants' home by trained and experienced qualitative researchers. PARTICIPANTS: Seventy-two men and women diagnosed with lung cancer were interviewed within 6 months of their diagnosis. RESULTS: The English participants, regardless of their own smoking status, typically raised the topic of smoking early in their interviews. Smoking was mentioned in relation to symptom appraisal and interactions with others, including health professionals. Participants in all three countries interpreted their symptoms in relation to their smoking status, but in Sweden (unlike England) there was no suggestion that this deterred them from seeking care. English participants, but not Swedish or Danish, recounted reluctance to consult healthcare professionals with their symptoms while they were still smoking, some gave up shortly before consulting. Some English patients described defensive strategies to challenge stigma or pre-empt other people's assumptions about their culpability for the disease. A quarter of the Danish and 40% of the Swedish participants did not raise the topic of smoking at any point in their interview. CONCLUSION: The causal relationship between smoking and lung cancer is well known in all three countries, yet this comparative analysis suggests that the links between a sense of responsibility, stigma and reluctance to consult are not inevitable. These findings help illuminate why English patients with lung cancer tend to be diagnosed at a later stage than their Swedish counterparts.

Actions helping expressed or anticipated needs: Patients with advanced cancer and their family caregivers' experiences of specialist palliative home care teams.

Patients with advanced cancer and family caregivers in palliative care face physical, psychological, social and existential challenges, much of the time home alone. Specialist palliative home care team services can be instrumental for sense of security in an uncertain situation. The aim of this study was to describe patients' and family caregivers' experiences of specialist palliative home care team actions that are identified by the participants as helping or hindering interventions. Six patients and seven family caregivers were interviewed using the enhanced critical incident technique. Ninety-five critical incidents and wish list items were identified. Providing adequate resources, keeping promises and being reliable, and creating partnerships are actions by specialist palliative care teams that patients and family caregivers experienced as helping in meeting expressed or anticipated needs in patients and family caregivers. Being reliable and including patients and family caregivers in partnerships help to continue with daily life, even though death may be close. Unmet needs resulted in experiences of disrespect or violation of personal space/integrity.

Quality of care for the dying across different levels of palliative care development: A population-based cohort study.

BACKGROUND: There is a lack of knowledge about how the provision and availability of specialized palliative care relates to the quality of dying in hospital and community-based settings. AIM: We aimed to explore the quality of care during last week of life in relation to different levels of palliative care development. DESIGN: We investigated access to palliative care in Southern Sweden, where one region offers palliative care in accordance with European Association for Palliative Care guidelines for capacity, and the other region offers less developed palliative care. Data on approximately 12,000 deaths during 2015 were collected from the Swedish Register of Palliative Care. The quality of care was investigated by region, and was measured in terms of assessment of oral health and of pain, and end-of-life conversation, companionship at death and artificial nutrition/fluid in the last 24 h. RESULTS: The overall quality of care during last week of life was not consistently better in the region with fully developed palliative care compared with the less developed region. In fact, for patients dying in hospitals and community-based settings, the quality was statistically significantly better in the less developed region. The small proportion of patients who had access to specialized palliative care had superior quality of care during the last week of life as compared to patients in other care settings. CONCLUSION: The capacity of specialized palliative care does not per se influence the quality of care during the last week of life for patients in other settings.

Conversations about Death and Dying with Older People: An Ethnographic Study in Nursing Homes.

Nursing homes are often places where older persons “come to die.” Despite this, death and dying are seldom articulated or talked about. The aim of this study was to explore assistant nurses’ experiences of conversations about death and dying with nursing home residents. This study is part of an implementation project through a knowledge-based educational intervention based on palliative care principles. An ethnographic study design was applied in seven nursing homes, where eight assistant nurses were interviewed and followed in their daily assignments through participant observations. The assistant nurses stated that they had the knowledge and tools to conduct such conversations, even though they lacked the time and felt that emotional strain could be a hinder for conversations about death and dying. The assistant nurses used the strategies of distracting, comforting, and disregarding either when they perceived that residents’ reflections on death and dying were part of their illness and disease or when there was a lack of alignment between the residents’ contemplations and the concept of dying well. They indicated that ambivalence and ambiguity toward conversations about death and dying should be taken into consideration in future implementations of knowledge-based palliative care that take place in nursing homes after this project is finalized.

It is important that the process goes quickly, isn't it?" A qualitative multi-country study of colorectal or lung cancer patients' narratives of the timeliness of diagnosis and quality of care.

PURPOSE: The emphasis on early diagnosis to improve cancer survival has been a key factor in the development of cancer pathways across Europe. The aim of this analysis was to explore how the emphasis on early diagnosis and timely treatment is reflected in patient's accounts of care, from the first suspicion of colorectal or lung cancer to their treatment in Denmark, England and Sweden. METHOD: We recruited 155 patients in Denmark, England and Sweden who were within six months of being diagnosed with lung or colorectal cancer. Data were collected via semi-structured narrative interviews and analysed using a thematic approach. RESULTS: Participants' accounts of quality of care were closely related to how quickly (or not) diagnosis, treatment and/or healthcare processes went. Kinetic metaphors as a description of care (such as treadmill) could be interpreted positively as participants were willing to forgo some degree of control and accept disruption to their lives to ensure more timely care. Drawing on wider cultural expectations of the benefits of diagnosing and treating cancer quickly, some participants were concerned that the waiting times between interventions might allow time for the cancer to grow. CONCLUSIONS: Initiatives emphasising the timeliness of diagnosis and treatment are reflected in the ways some patients experience their care. However, these accounts were open to further contextualisation about what speed of healthcare processes meant for evaluating the quality of their care. Healthcare professionals could therefore be an important patient resource in providing reassurance and support about the timeliness of diagnosis or treatment.