Place of care and death preferences among recently bereaved family members: a cross-sectional survey.

OBJECTIVES: The aim was: (1) to investigate preferred place for end-of-life care and death for bereaved family members who had recently lost a person with advanced illness and (2) to investigate associations between bereaved family members' preferences and individual characteristics, health-related quality of life, as well as associations with their perception of the quality of care that the ill person had received, the ill person's preferred place of death and involvement in decision-making about care. METHODS: A cross-sectional survey with bereaved family members, employing descriptive statistics and multinominal logistic regression analyses. RESULTS: Of the 485 participants, 70.7% were women, 36.1% were ≥70 years old, 34.5% were partners and 51.8% were children of the deceased. Of the bereaved family members, 52% preferred home for place of end-of-life care and 43% for place of death. A higher likelihood of preferring inpatient palliative care was associated with being female and having higher education, whereas a lower likelihood of preferring a nursing home for the place of care and death was associated with higher secondary or higher education. Partners were more likely to prefer hospital for place of care and nursing home for place of death. CONCLUSIONS: Home was the most preferred place for end-of-life care and death. Bereaved people's experiences of end-of-life care may impact their preferences, especially if they had a close relationship, such as a partner who had a higher preference for nursing home and hospital care. Conversations about preferences for the place of care and death considering previous experience are encouraged.

Place of death among children from 0 to 17 years of age: A population-based study from Sweden.

AIM: The aim of this study is to contribute to the development of paediatric palliative care by investigating, on a population basis, where children in Sweden died, from 2013 to 2019. A particular focus was on comparing two groups: children who died during their first year of life with children who died at 1-17 years of age. METHODS: We hypothesised that there might be variations in place of death between the defined groups. Utilising national registry data, descriptive statistics were used to assess the distribution and variations in the place of death. Logistic regression analyses were conducted to ascertain the impact of associated factors. RESULTS: Most children died in hospitals (74.7%). The hypothesis postulating divergences in the place of death between age groups was not substantiated. Sex and birthplace showed no significant differences in home deaths. Deaths due to malignancies had a relatively high likelihood of occurring at home (39.0%). For perinatal diagnoses, the incidence of home deaths was relatively low (1.5%). CONCLUSION: Children who received support from a specialist palliative service in their own homes were notably less likely to die in a hospital setting compared to those who did not receive such support. An unplanned hospital visit increased the likelihood of hospital death.

Trends in the place of death in Sweden from 2013 to 2019 - disclosing prerequisites for palliative care.

Background: The drive for home care has increasingly impacted the organization and allocation of resources within the Swedish healthcare system. Objectives: With an interest in uncovering prerequisites for palliative care, this study aimed to investigate longitudinal trends in place of death within the adult Swedish population from 2013 to 2019 and examine potential associations between place of death and individual, geographic, and socioeconomic factors; hospital capacity; and healthcare utilization. Methods: This population-level comprehensive register study included all deceased individuals ⩾18 years old with a registered place of death (n = 599,137). Data were retrieved from public and patient data registers and the national register for palliative care. Trends and associations between place of death and co-variables were investigated by logistic regression- and interaction analyses. Results: From 2013 to 2019, the total number of home deaths increased by 1.9%, whereas the number of hospital deaths decreased by 2.6%. In the overall population of individuals living in their own homes, from 2013 to 2019, the likelihood of dying in hospital versus dying at home decreased (odds ratio: 0.98, 95% confidence interval: 0.97-0.99). Within the population with potential palliative needs living in their own home (78.4%), the likelihood of dying in hospitals equally decreased, except in Stockholm and the north region. For individuals residing in a nursing home, however, the likelihood of dying in hospital versus remaining in the nursing home until death only significantly decreased in the southern region. Conclusion: The results show a trend towards a decrease in hospital deaths but with cross-regional variations. Still, in 2019, only about one-fifth of all individuals died in their own homes. Public health-oriented interventions aimed at strengthening palliative care resources in nursing homes and home care are suggested.

Predictors of preparedness for recovery following colorectal cancer surgery: a latent class trajectory analysis.

AIM: With an interest in providing knowledge for person-centred care, our overall goal is to contribute a greater understanding of diversity among patients in terms of their preparedness before and up to six months after colorectal cancer surgery. Our aim was to describe and provide a tentative explanation for differences in preparedness trajectory profiles. MATERIAL AND METHODS: The study was explorative and used prospective longitudinal data from a previously published intervention study evaluating person-centred information and communication. The project was conducted at three hospitals in Sweden. Patient-reported outcomes measures, including the Longitudinal Preparedness for Colorectal Cancer Surgery Questionnaire, were collected before surgery, at discharge, and four to six weeks, three months, and six months after surgery. Clinical data were retrospectively obtained from patients' medical records. We used latent class growth models (LCGMs) to identify latent classes that distinguish subgroups of patients who represent different preparedness trajectory profiles. To determine the most plausible number of latent classes, we considered statistical information about model fit and clinical practice relevance. We used multivariable regression models to identify variables that explain the latent classes. RESULTS: The sample (N = 488) comprised people with a mean age of 68 years (SD = 11) of which 44% were women. Regarding diagnoses, 60% had colon cancer and 40% rectal cancer. The LCGMs identified six latent classes with different preparedness for surgery and recovery trajectories. The latent classes were predominantly explained by differences in age, sex, physical classification based on comorbidities, treatment hospital, global health status, distress, and sense of coherence (comprehensibility and meaningfulness). CONCLUSION: Contrary to the received view that emphasizes standardized care practices, our results point to the need for adding person-centred and tailored approaches that consider individual differences in how patients are prepared before and during the recovery period related to colorectal cancer surgery.

Place of death among foreign-born individuals: a national population-based register study.

Background: Relatively little is known about where foreign-born individuals die in Sweden and how birth region might influence place of death. Thus, there is a need for population-based studies investigating place of death and associated factors among foreign-born individuals. Objectives: The aim of this study was to identify variations in place of death among foreign-born individuals residing in Sweden and to compare place of death between the foreign- and domestic-born population. We also examine the association between place of death, underlying cause of death and sociodemographic characteristics among the foreign-born population. Design: A population-based register study. Methods: All deceased individuals ⩾18 years of age in Sweden with a registered place of death between 2012 and 2019 (n = 682,697). Among these, 78,466 individuals were foreign-born. Univariable multinomial logistic regression modelling and multivariable multinomial logistic regression analyses were performed. Results: Overall, hospital was the most common place of death among the foreign-born population. However, there were variations in place of death related to region of birth. Compared to domestic-born, a higher proportion of foreign-born individuals dies at home, the majority of whom were born on the African continent. Conclusion: Region of birth is one of the several factors associated with place of death among foreign-born individuals. Further research is needed to explore both preferences and barriers to place of death among foreign-born individuals.

Support received by family members before, at and after an ill person's death.

BACKGROUND: It is widely recognised, that family members are central to care of people with advanced illness, and that support should be provided to all family members in need thereof. The aim of this study was to investigate family members' experiences of support received during the last three months of life, at the time of death and after the death of a person with advanced illness. METHODS: A retrospective cross-sectional survey design was employed, using the VOICES(SF) questionnaire and multiple methods for data analyses. The sample consisted of 485 bereaved family members (aged: 20-90 years old, 70% women) of people who died in hospital between August 2016-April 2017. RESULTS: Of the family members, 58,8% reported they had received enough help and support during the illness, whereas 30,2% had not. Family members' comments about support during the illness were mainly related to care the ill person had or had not received, rather than about support they themselves received. Of all family members, 52,8% reported having had enough support at the time of the ill person's death. Related to support at death, 14,6% reported that the imminence of death was not clear, which was described as having affected their opportunity to be with the dying person at the time of death. Of all, 25,2% had a follow-up conversation after the death, 48% did not and did not want to, and 21% had no follow-up conversation, but would have liked one. A follow-up conversation was described as helpful for the bereavement process, and disappointment was expressed when not receiving support after the death. CONCLUSIONS: Family members' experiences of support were partly related to whether the ill person's care needs were fulfilled. Healthcare staff expressing empathy and respect in the care of dying people and their family members were important for family members' experiences of support. Family members' difficulty recognising that death was imminent and the importance of healthcare staff providing them with clear information were expressed in connection with support at death. Follow-up conversations were valued by family members, especially if with a healthcare professional who was present at the time of death.

Preparedness for colorectal cancer surgery and recovery through a person-centred information and communication intervention - A quasi-experimental longitudinal design.

To meet patients' information and communication needs over time in order to improve their recovery is particularly challenging for patients undergoing cancer surgery. The aim of the study was to evaluate whether an intervention with a person-centred approach to information and communication for patients diagnosed with colorectal cancer undergoing surgery can improve the patients' preparedness for surgery, discharge and recovery during six months following diagnosis and initial treatment. The intervention components involving a novel written interactive patient education material and person-centred communication was based on critical analysis of conventional information and communication for these patients. During 2014-2016, 488 consecutive patients undergoing elective surgery for colorectal cancer were enrolled in a quasi-experimental longitudinal study. In three hospitals, first a conventional care group (n = 250) was recruited, then the intervention was introduced, and finally the intervention group was recruited (n = 238). Patients' trajectories of preparedness for surgery and recovery (Preparedness for Colorectal Cancer Surgery Questionnaire-PCSQ) health related quality of life (EORTC QLQ-C30) and distress (NCCS Distress Thermometer) were evaluated based on self-reported data at five time points, from pre-surgery to 6 months. Length of hospital stay and patients' behavior in seeking health care pre- and post-surgery were extracted from patient records. Longitudinal structural equation models were used to test the hypothesized effects over time. Statistically significant positive effects were detected for two of the four PCSQ domains (patients searching for and making use of information, and making sense of the recovery) and for the role functioning domain of the EORTC QLQ-C30. Patients in the intervention group were also more likely to contact their assigned cancer "contact nurse" (a.k.a. nurse navigator) instead of contacting a nurse on duty at the ward or visiting the emergency department. In conclusion, the overall hypothesis was not confirmed. Further research is recommended on written and oral support tools to facilitate person-centred communication.