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.
BACKGROUND: Ideas of patient involvement are related to notions of self-determination and autonomy, which are not always in alignment with complex interactions and communication in clinical practice.
AIM: To illuminate and discuss patient involvement in routine clinical care situations in nursing practice from an ethical perspective.
METHOD: A case study based on an anthropological field study among patients with advanced cancer in Denmark.
ETHICAL CONSIDERATIONS: Followed the principles of the Helsinki Declaration.
FINDINGS: Two cases illustrated situations where nurses refused patient involvement in their own case.
DISCUSSION: Focus on two ethical issues, namely 'including patients' experiences in palliative nursing care' and 'relational distribution of power and knowledge', inspired primarily by Hannah Arendt's concept of thoughtlessness and a Foucauldian perspective on the medical clinic and power. The article discusses how patients' palliative care needs and preferences, knowledge and statements become part of the less significant background of nursing practice, when nurses have a predefined agenda for acting with and involvement of patients. Both structurally conditioned 'thoughtlessness' of the nurses and distribution of power and knowledge between patients and nurses condition nurses to set the agenda and assess when and at what level it is relevant to take up patients' invitations to involve them in their own case.
CONCLUSION: The medical and institutional logic of the healthcare service sets the framework for the exchange between professional and patient, which has an embedded risk that 'thoughtlessness' appears among nurses. The consequences of neglecting the spontaneous nature of human action and refusing the invitations of the patients to be involved in their life situation call for ethical and practical reflection among nurses. The conditions for interaction with humans as unpredictable and variable challenge nurses' ways of being ethically attentive to ensure that patients receive good palliative care, despite the structurally conditioned logic of healthcare.
Background: In the last years of life, burden of disease and disability and need of health- and social care often increase. Social, functional and psychological factors may be important in regard to social- and health care utilization. This study aims to describe use of health- and social care during the last year of life among persons living in ordinary housing or in assisted living facilities.
Methods: A retrospective study examining health- and social care utilization during their last year of life, using a subsample from the Swedish twin registries individually linked to several Swedish national quality registries (NQR). Persons that died during 2008–2009 and 2011–2012 (n = 1518) were selected.
Results: Mean age at death was 85.9 ± 7.3 (range 65.1–109.0). Among the 1518 participants (women n = 888, 58.5%), of which 741 (49%) were living in assisted living facilities and 1061 (69.9%) had at least one hospitalization during last year of life. The most common causes of death were cardiovascular disease (43.8%) and tumors (15.3%). A multivariable logistic regression revealed that living in ordinary housing, younger age and higher numbers of NQR’s increased the likelihood of hospitalization.
Conclusions: Persons in their last year of life consumed high amount of health- and social care although 12% did not receive any home care. Married persons received less home care than never married. Persons living in ordinary housing had higher numbers of hospitalizations compared to participants in assisted living facilities. Older persons and persons registered in fewer NQR’s were less hospitalized.
Background: Oesophageal and gastric cancer are highly lethal malignancies with a 5-year survival rate of 15–29%. More knowledge is needed about the quality of end-of-life care in order to understand the burden of the illness and the ability of the current health care system to deliver timely and appropriate end-of-life care. The aim of this study was to describe the impact of initial treatment strategy and survival time on the quality of end-of-life care among patients with oesophageal and gastric cancer.
Methods: This register-based cohort study included patients who died from oesophageal and gastric cancer in Sweden during 2014–2016. Through linking data from the National Register for Esophageal and Gastric Cancer, the National Cause of Death Register, and the Swedish Register of Palliative Care, 2156 individuals were included. Associations between initial treatment strategy and survival time and end-of-life care quality indicators were investigated. Adjusted risk ratios (RRs) with 95% confidence intervals were calculated using modified Poisson regression.
Results : Patients with a survival of =3 months and 4–7 months had higher RRs for hospital death compared to patients with a survival =17 months. Patients with a survival of =3 months also had a lower RR for end-of-life information and bereavement support compared to patients with a survival =17 months, while the risks of pain assessment and oral assessment were not associated with survival time. Compared to patients with curative treatment, patients with no tumour-directed treatment had a lower RR for pain assessment. No significant differences were shown between the treatment groups regarding hospital death, end-of-life information, oral health assessment, and bereavement support.
Conclusions : Short survival time is associated with several indicators of low quality end-of-life care among patients with oesophageal and gastric cancer, suggesting that a proactive palliative care approach is imperative to ensure quality end-of-life care.
Studio DöBra is a community-based initiative in which children (9 y/o) and older adults (mostly 80+) engaged with topics related to dying, death and loss through shared arts activities (e.g. collage, sculpture, games). In an ageing society, Sweden's end-of-life (EoL) care is increasingly professionalised and specialised, but there is little community involvement. One goal of Studio DöBra was therefore to support community engagement with EoL-related topics. Another goal was to create opportunities for interaction between children and older adults as there are few intergenerational meeting places. Two iterations of Studio DöBra were developed (2016, 2018) in different Swedish cities, utilising a community-based participatory research approach. Project groups comprised first author MK and representatives of community organisations such as meeting places for older adults, after-school centres and artistic organisations. Each iteration engaged eight children and eight older adults in a series of five workshops. This article investigates how children and older adults motivate their participation, their experiences of participating and ways in which they were affected by participation. We also investigate how parents reflect on their child's participation in Studio DöBra. Older adults, children and their parents were interviewed after each Studio DöBra. An inductive qualitative process guided by interpretive description was used to analyse the transcripts. Findings indicate that participants acted as individuals with agency in connecting across generations and in creating spaces for engaging with EoL-topics, not only in Studio DöBra but also in their social networks. Participants reflected on a changing sense of community through new intergenerational connections and social activities, and expressed a desire to maintain these. However, participants indicated sustainability challenges related to lacking agency in maintaining these spaces and sense of intergenerational community, as they rely on support from community organisations.
BACKGROUND: The significance of metaphors for the experience of cancer has been the topic of extensive previous research, with "Battle" and "Journey" metaphors standing out as key. Adaptation to the patient's use of metaphor is generally believed to be an important aspect of person-centered care, especially in palliative care. The aim of this study was to investigate the use of metaphors in blogs written in Swedish by people living with advanced cancer and explore possible patterns associated with individuals, age and gender.
METHODS: The study is based on a dataset totaling 2,602,479 words produced some time during the period 2007-2016 by 27 individuals diagnosed with advanced cancer. Both qualitative and quantitative procedures were used, and the findings are represented as raw frequencies as well as normalized frequencies per 10,000 words. Our general approach was exploratory and descriptive. The Mann-Whitney U test was used to analyze statistical significance.
RESULTS: Our results confirm the strong foothold of "Journey" and "Battle" metaphors. "Imprisonment" and "Burden" metaphors were also used by the majority of the individuals. The propensity to use metaphors when describing the cancer experience was found to differ extensively across the individuals. However, individuals were not found to opt for one conceptualization over the other but tended to draw on several different metaphor domains when conceptualizing their experience. Socio-demographic factors such as age or gender were not found to be strong predictors of metaphor choice in this limited study.
CONCLUSIONS: Using a range of different metaphors allows individuals with advanced cancer to highlight different aspects of their experience. The presence of metaphors associated with "Journey", "Battle", "Imprisonment" and "Burden" across individuals could be explained by the fact that the bloggers are part of a culturally consistent cohort, despite variations in age, sex and cancer form. Awareness of metaphors commonly used by patients can enhance health professionals' capacity to identify metaphorical patterns and develop a common language grounded in the patients' own metaphor use, which is an important requisite for person-centered palliative care.
Background: The McGill Quality of Life Questionnaire - Expanded (MQOL-E) and the Quality of Life in Life-Threatening Illness-Family Carer/Caregiver version (QOLLTI-F) are developed for use with patients facing the end of life and their family carers, respectively. They are also developed for possible use as companion instruments. Contemporary measurement validity theory places emphasis on response processes, i.e. what people feel and think when responding to items. Response processes may be affected when measurement instruments are translated and adapted for use in different cultures. The aim of this study was to translate and examine content validity and response processes during completion of MQOL-E and QOLLTI-F version 2 (v2) among Swedish patients with life-threatening illness and their family carers.
Methods: The study was conducted in two stages (I) translation and adaptation (II) examination of content validity and response processes using cognitive interviews with 15 patients and 9 family carers. Participants were recruited from the hemodialysis unit, heart clinic, lung clinic and specialized palliative care of a Swedish county hospital. Patients had life-threatening illness such as advanced heart failure, advanced chronic obstructive pulmonary disease, end-stage kidney disease or advanced cancer. Patients were outpatients, inpatients or receiving home care.
Results: Patients and family carers respectively believed that the items of the MQOL-E and QOLLTI-F v2 reflect relevant and important areas of their quality of life. Although some items needed more time for reflection, both instruments were considered easy to understand. Some changes were made to resolve issues of translation. Participants expressed that reflecting on their situation while answering questions was valuable and meaningful to them, and that responding was an opportunity to express feelings.
Conclusions: The results of response processes pertaining to the Swedish translations of both MQOL-E and QOLLTI-F v2 contribute evidence regarding content validity, linguistic equivalence and cultural appropriateness of the translated instruments. In addition, results show that the instruments may support conversations on matters of importance for quality of life between patients and/or family carers and health care professionals. Further research is needed to study the psychometric properties of Swedish translations.
Introduction: Poorer end-of-life (EOL) care for elderly cancer patients has been reported. We assessed the impact of age on 13 indicators for the quality of EOL care as well as adherence to 6 national quality indicators in gynaecological cancer patients.
Methods: Age-dependent differences in 13 palliative care quality indicators were studied in gynaecological cancer patients registered in the population-based Swedish Register of Palliative Care. Association between the patient’s age and each quality indicator was analyzed by logistic regression, adjusted for place of death where appropriate. Adherence to six national quality indicators determined by the Swedish National Board of Health and Welfare was estimated in all patients.
Results: We included 3940 patients with the following age distribution: 1.6% were 18–39 years of age, 12.3% 40–59 years, 37.2% 60–74 years, 28.9% 75–84 years and 20% were =85 years. Age-dependent differences in implementation rate were present for some of the 13 quality indicators. Compared to elderly cancer patients, younger patients were more likely to be cared for by a specialized palliative care service, more often informed about imminent death as well as assessed for pain. For most national quality indicators, the goal level was not met. Only for the ‘on demand prescription for pain’, the goal level was reached.
Conclusions: EOL care did not meet national quality indicators in this population-based data from Sweden, in particular in the elderly population. Elderly gynaecological cancer patients are at high risk of poorer EOL care without the involvement of specialized palliative care services. Palliative care services need to be implemented across all institutions of EOL care to ensure good and equal care.
Context: Despite being associated with dependence and social stigma, methadone is a potential end-of-life option in complex cancer pain.
Objectives: To explore attitudes and opinions about methadone and its potential role and current use in complex end-of-life pain.
Methods: Semi-structured interviews (n = 30) with physicians in specialized palliative care, transcribed and analyzed with conventional qualitative content analysis.
Results: According to the physicians, patients and relatives expressed unexpectedly few negative attitudes, not affecting methadone’s use as an analgesic. Complex pain in bone-metastatic cancer of the prostate, breast and kidney, as well as pancreatic cancer and sarcomas were recurrent suggestions of appropriate indications.
Most of the informants stated that they applied a mechanism-based treatment and mainly prescribed low-dose methadone as an add-on to an existing opioid therapy to benefit from methadone´s proposed NMDA-receptor inhibiting properties, e.g. in cases with reduced opioid sensitivity. Despite its complex pharmacokinetics with a long half-life, most informants expressed defined strategies to avoid side-effects such as respiratory depression, especially when initiating treatment in the home-care setting.
While many palliative care physicians expressed an overly enthusiastic attitude, others stressed the risks of overconfidence, low precision in use, and overlooked treatment options. Besides the obvious physical pain-relieving effects, they stated that effective pain relief could result in a reduced workload and emotional empowerment, both for physicians and staff.
Conclusion: Methadone, especially in the form of low-dose add-on to other opioids is widely advocated in Swedish specialized palliative care as a practical and safe method with rapid onset in complex pain situations at the end of life.
We do not know how much clinical physicians carrying out clinical trials in oncology and haematology struggle with ethical concerns. To our knowledge, no empirical research exists on these questions in a Nordic context. Therefore, this study aims to learn what kinds of ethical challenges physicians in Sweden, Denmark and Finland (n = 29) face when caring for patients in clinical trials; and what strategies, if any, they have developed to deal with them. The main findings were that clinical cancer trials pose ethical challenges related to autonomy issues, unreasonable hope for benefits and the therapeutic misconception. Nevertheless, some physicians expressed that struggling with such challenges was not of great concern. This conveys a culture of hope where health care professionals and patients uphold hope and mutually support belief in clinical trials. This culture being implicit, physicians need opportunities to deliberately reflect over the characteristics that should constitute this culture.
OBJECTIVES: To map out the total use of long-term care (LTC; ie, home care or institutional care) during the last 2 years of life and to investigate to what extent gender differences in LTC use were explained by cohabitation status and age at death.
DESIGN: The National Cause of Death Register was used to identify decedents. Use of LTC was based on the Social Services Register (SSR) and sociodemographic factors were provided by Statistics Sweden.
SETTING AND PARTICIPANTS: All persons living in Sweden who died in November 2015 aged =67 years (n = 5948).
METHODS: Zero inflated negative binomial regression was used to estimate the relative impact of age, gender, and cohabitation status on the use of LTC.
RESULTS: Women used LTC to a larger extent [odds ratio (OR) 2.17, 95% confidence interval (CI) 1.92-2.50] and for a longer period [risk ratio (RR) 1.14, 95% CI 1.11-1.18] than men. When controlling for age at death and cohabitation status, gender differences in LTC attenuated (OR 1.47, 95% CI 1.28-1.72) and vanished in regard to the duration. In the controlled model, women used LTC for 15.6 months (95% CI 15.2-16.0) and men for 14.1 months (95% CI 13.7-14.5) out of 24 months. The length of stay in institutional care was 7.2 (95% CI 6.8-7.5) and 6.2 months (95% CI 5.8-6.6), respectively.
CONCLUSIONS AND IMPLICATIONS: A substantial part of women's greater use of LTC was due to their higher age at death and because they more often lived alone. Given that survival continues to increase, the association between older age at death and LTC use suggests that policy makers will have to deal with an increased pressure on the LTC sector. Yet, increased survival among men could imply that more women will have access to spousal caregivers, although very old couples may have limited capacity for extensive caregiving at the end of life.
BACKGROUND: To make end-of-life (EOL) decisions is a complex and challenging task for intensive care physicians and a substantial variability in this process has been previously reported. However, a deeper understanding of intensivists' experiences and attitudes regarding the decision-making process is still, to a large extent, lacking. The primary aim of this study was to address Swedish intensivists' experiences, beliefs and attitudes regarding decision-making pertaining to EOL decisions. Second, we aimed to identify underlying factors that may contribute to variability in the decision-making process.
METHOD: This is a descriptive, qualitative study. Semi-structured interviews with nineteen intensivists from five different Swedish hospitals, with different ICU levels, were performed from February 1st to May 31st 2017.
RESULTS: Intensivists strive to make end-of-life decisions that are well grounded, based on sufficient information. Consensus with the patient, family, and other physicians is important. Concurrently, decisions that are made with scarce information or uncertain medical prognosis, decisions made during on-call hours and without support from senior consultants cause concern for many intensivists. Underlying factors that contribute to the variability in decision making are lack of continuity among senior intensivists, lack of needed support during on-call hours and disagreements with physicians from other specialties. There is also an individual variability primarily depending on the intensivist's personality.
CONCLUSION: Swedish intensivists' wish to make end-of-life decisions based on sufficient information, medically certain prognosis and consensus with the patient, family, staff and other physicians. Swedish intensivists' experience a variability in end-of-life decisions, which is generally accepted and not questioned.
Children's experiences of information and family communication when a parent has a life-threatening illness have been sparsely studied, though such information is important for the child's wellbeing. The aim of this study was to explore children's reports of illness-related information and family communication when living with a parent with a life-threatening illness. Forty-eight children, aged 7 to 19 years, were recruited from four specialized palliative home care units in Stockholm, Sweden. All but one child reported that someone had told them about the parent's life-threatening illness; however, two thirds wanted more information. A quarter of the teenagers reported that they had questions about the illness that they did not dare to ask. Half of the children, aged 8 to 12, reported that they felt partially or completely unable to talk about how they felt or show their feelings to someone in the family. Interventions are needed that promote greater family communication and family-professional communication.
Background: The Patient Dignity Inventory (PDI) is based on an empirically-driven dignity model that has been developed and used for clinically assessing the various sources of dignity-related distress. In a recent review, it received the highest score as a useful instrument in both practice and research in palliative care. The PDI has been adapted to and validated for use in various countries, but not yet Sweden.
Aims: To translate the PDI into Swedish, including cultural adaptation for clinical use.
Methods: A multi-step process of translation, negotiated consensus, expert group discussion (n=7: four invited experts and three researchers) and cognitive interviewing (n=7: persons with palliative care needs).
Findings: Discussion, by the expert reviewers, of both linguistic and cultural issues regarding the content and readability of the translated Swedish version resulted in revisions of items and response alternatives, focusing mainly on semantic, conceptual, and experiential equivalence. A pilot version for cognitive interviews was produced. The analysis of data showed that most of the items were judged to be relevant by the persons with palliative care needs.
Conclusion: The process of translation and adaptation added clarity and consistency. The Swedish version of the PDI can be used in assessing dignity-related distress. The next step will be to test this Swedish version for psychometric properties in a larger group of patients with palliative care needs before use in research.
BACKGROUND: Persons with dementia may have severe physical and psychological symptoms at the end of life. A therapy dog used in their care can provide comfort and relieve thier anxiety. The dog handler guides the dog during the interaction with the patient.
AIM: To describe the impact of therapy dogs on people with dementia in the final stages of life from the perspective of the dog handler.
METHODS: Interviews were conducted and analysed using qualitative content analysis.
FINDINGS: The dog provides comfort and relief through its presence and by responding to the physical and emotional expressions of the dying person.
CONCLUSIONS: Interactions with dogs were found to have a positive impact on persons with dementia and eased the symptoms associated with end of life according to the dog handlers.
Background: To avoid aggressive treatments at the end-of-life and to provide palliative care (PC), physicians need to terminate futile anti-cancer treatments and define the palliative goal of the treatment in time. This single center study assesses the practices used to make the decision that leads to treatment with a palliative goal, i.e., the PC decision and its effect on anti-cancer treatments at the end of life.
Material and methods: Patients with a cancer diagnosis treated in tertiary hospital during 1st January 2013 – 31st December 2014 and deceased by the end of 2014 were identified in the hospital database (N = 2737). Of these patients, 992 were randomly selected for this study. The PC decision was screened from patient records, i.e., termination of cancer-specific treatments and a focus on symptom-centered PC.
Results: The PC decision was defined in 82% of the patients during the last year of life (49% >30 days and 33% =30 days before death, 18% with no decision). The median time from the decision to death was 46 days. Systemic cancer therapy was given during the last month of life in 1%, 36% and 38% (p < .001) and radiotherapy 22%, 40% and 31% (p = .03) cases, respectively; referral to a PC unit was made in 62%, 22% and 11%, respectively (p < .001). In logistic regression analyses younger age, shorter duration of the disease trajectory and type of cancer (e.g., breast cancer) were associated with a lack or late timing of the PC decision.
Conclusion: The decision to initiate a palliative goal for the treatment was frequently made for cancer patients but occurred late for every third patient. Younger age and certain cancer types were associated with late PC decisions, thus leading to anti-cancer treatments continuing until close to the death with low access to a PC unit.
In Sweden, patients in early palliative stages of illness are cared for in primary care and often offered home care. Many are older and at risk for malnutrition, but little is known about their symptom burden and nutritional problems. This cross-sectional study divided older patients in home care into those with and without risk for malnutrition and compared symptom burden in the 2 groups. Participants were patients in Stockholm County (n = 121) in early palliative stages of disease cared for at home by primary care professionals from 10 health-care centers. The Mini Nutritional Assessment (MNA) was used to identify risk for malnutrition. Symptoms and/or nutritional status in patients with and without risk were assessed with the Functional Assessment of Anorexia/Cachexia Therapy (FAACT), Patient-Generated Subjective Global Assessment Short Form (PG-SGA), and Edmonton Symptom Assessment System (ESAS). Forty-two percent of the patients were at risk for malnutrition (MNA). Appetite (P = .012), tiredness (P = .003), and anxiety (P = .008) were worse in these patients than in those without risk (ESAS; significance level, P = .015). Patients at risk were also more concerned about how thin they looked (P = .006), agreed more strongly that their family or friends were pressuring them to eat (P = .000; FAACT; significance level, P = .029), had a higher symptom burden (P = .005), had lower physical activity (P = .000), and more lost weight over time (P = .032; PG-SGA; significance level, P = .040). This study adds a more detailed picture of the symptom burden in older patients at risk for malnutrition. Such information is needed to identify risk for malnutrition earlier and improve patients’ health.
BACKGROUND: Undergraduate nursing students encounter patients at the end of life during their clinical training. They need to confront dying and death under supportive circumstances in order to be prepared for similar situations in their future career.
AIM: To explore undergraduate nursing students' descriptions of caring situations with patients at the end of life during supervised clinical training.
METHODS: A qualitative study using the critical incident technique was chosen. A total of 85 students wrote a short text about their experiences of caring for patients at the end of life during their clinical training. These critical incident reports were then analysed using deductive and inductive content analysis.
FINDINGS: The theme 'students' transformational learning towards becoming a professional nurse during clinical training' summarises how students relate to patients and relatives, interpret the transition from life to death, feel when caring for a dead body and learn end-of-life caring actions from their supervisors.
IMPLICATIONS: As a preparation for their future profession, students undergoing clinical training need to confront death and dying while supported by trained supervisors and must learn how to communicate about end-of-life issues and cope with emotional stress and grief.
Aim: Aim was to describe how Registered Nurses (RNs) and assistant nurses (ANs) working in residential care homes and home care perceived quality end-of-life care after implementation of the Liverpool Care Pathway (LCP) in terms of subjective importance of care aspects and actual care given.
Design: Descriptive cross-sectional.
Methods: Registered Nurses (N = 22; 100% response rate) and ANs (N = 120; 59% response rate) working in a Swedish municipality. Data collection with a study-specific questionnaire (50 items) about perceived reality (PR) and subjective importance (SI). Non-parametric statistics.
Results: Implementation of the LCP ensured systematic assessment and alleviation of patients' symptoms and needs. The ANs, more than the RNs, perceived that the patients received the best possible nursing and medical care (p = .01). Both groups considered that communication with patients and families as well as the information exchange between the team members was facilitated. Areas for improvement were identified about psychological and existential support and patients and families' participation in care.
BACKGROUND: Despite complex illness trajectories and a high symptom burden, palliative care has been sub-optimal for patients with end-stage kidney disease and hemodialysis treatment who have a high rate of hospitalization and intensive care towards end of life. There is a growing awareness that further development of palliative care is required to meet the needs of these patients and their family members. In this process, it is important to explore healthcare professionals' views on provision of care. The aim of this study was therefore to describe nurses' and physicians' perspectives on end-of-life and palliative care of patients treated with maintenance hemodialysis.
METHODS: Four focus group interviews were conducted with renal nurses (17) and physicians (5) in Sweden. Qualitative content analysis was used to analyze data.
RESULTS: Participants were committed to giving the best possible care to their patients, but there were challenges and barriers to providing quality palliative care in nephrology settings. Professionals described palliative care as end-of-life care associated with hemodialysis withdrawal or palliative dialysis, but also identified care needs and possibilities that are in line with an earlier integrated palliative approach. This was perceived as complex from an organizational point of view. Participants identified challenges related to coordination of care and different perspectives on care responsibilities that impacted symptom management and patients' quality of life. Communication issues relating to the provision of palliative care were revealed where the hemodialysis setting was regarded as an impediment, and personal and professional experiences, beliefs and knowledge were considered of major importance.
CONCLUSIONS: Nurses and physicians identified a need for the improvement of both late and earlier palliative care approaches. The results highlighted a requirement for and possibilities of training, counselling and support of health care professionals in the dialysis context. Further, multi-professional palliative care collaborations should be developed to improve the coordination and organization of end-of-life and palliative care of patients and their family members. A climate allowing conversations about advance care planning throughout the illness trajectory may facilitate the gradual integration of palliative care alongside life-prolonging treatment for improved support of patients and families.