Towards a Dignified Death: A New Approach to Care for People Using Substances Who Are at, or Near, the End of Their Lives.

There are no effective intervention studies for people using substances who are at, or near, the end of their lives. The needs of this group of people have been consistently overlooked even within the literature that identifies marginalised groups of people in need of greater recognition in palliative and end-of-life care. The aims of the project were to: (i) determine what a new, co-produced, model of care should look like for people using substances needing palliative and end-of-life care, and (ii) establish whether the new model had the potential to improve people's access to, and experience of, end-of-life care. This paper presents the development of the new approach to care. It was developed using participatory action research principles over a course of online workshops during the COVID-19 pandemic lockdown period in the UK. A theory of change that aims to inform future policy and practice development is presented. While the ambition of the research was stunted by the pandemic, the process of its development and dissemination of the model and its resources has continued. Response from participants highlighted the importance of this work, however, in this new field of policy and practice, preparatory work that engages a wide range of stakeholders is crucial to its success. This relationship building and topic engagement are major parts of implementation before more substantial and sustainable development goals can be met.

Serious illness care quality during COVID-19: Identifying improvement opportunities in narrative reports from a National Bereaved Family Survey.

BACKGROUND: COVID-19 significantly impacted care delivery to seriously ill patients, especially around including family and caregivers in patient care. AIM: Based on routinely collected bereaved family reports, actionable practices were identified to maintain and improve care in the last month of life, with potential application to all seriously ill patients. DESIGN: The Veterans Health Administration's Bereaved Family Survey is used nationally to gather routine feedback from families and caregivers of recent in-patient decedents; the survey includes multiple structured items as well as space for open narrative responses. The responses were analyzed using qualitative content analysis with dual review. SETTING/PARTICIPANTS: Between February 2020 and March 2021, there were 5372 responses to the free response questions of which 1000 (18.6%) responses were randomly selected. The 445 (44.5%) responses from 377 unique individuals included actionable practices. RESULTS: Bereaved family members and caregivers identified four opportunities with a total of 32 actionable practices. Opportunity 1: Facilitate the use of video communication, included four actionable practices. Opportunity 2: Provide timely and accurate responses to family concerns, included 17 actionable practices. Opportunity 3: Accommodate family/caregiver visitation, included eight actionable practices. Opportunity 4: Offer physical presence to the patient when family/caregivers are unable to visit, included three actionable practices. CONCLUSION: The findings from this quality improvement project are applicable during a pandemic, but also translate to improving the care of seriously ill patients in other circumstances, such as when family members or caregivers are geographically distant from a loved one during the last weeks of life.

"The communication I had with him back then is still stuck in my mind." Bereaved families of cancer patients' experiences for end-of-life communication.

PURPOSE: Communication with family members is important to end-of-life care for patients with cancer. It is an interactive engagement between terminally-ill cancer patients and their families through which they expand their mutual understanding to cope with losses and find meaning in death. This study aimed to describe the experiences of end-of-life communication between patients with cancer and their family members in South Korea. METHODS: This is a qualitative descriptive study using in-depth semi-structured interviews. Ten bereaved family members with end-of-life communication experience with terminal cancer patients were recruited through purposive sampling. Data were analyzed using qualitative content analysis. RESULTS: A total of 29 constructed meanings, 11 sub-categories, and the following 3 categories were derived: "Offering a space for patients to reminisce and reflect," "Building a bond," and "Reflections on what we need." End-of-life communication primarily centered on the patients, with families struggling to share their stories with them. Although the families coped well, they also regretted the lack of meaningful communication with the patients, indicating a need for support to facilitate effective end-of-life communication. CONCLUSION: The study highlighted concrete communication for finding meaning at the end-of-life for cancer patients and their families. We found that the families have the potential to communicate appropriately to cope with the patients' end-of-life. Nevertheless, end-of-life presents a unique challenge in which families require adequate support. Given the increasing number of patients and families dealing with end-of-life care in hospitals, healthcare providers should be mindful of their needs and help them cope effectively.

Quality of End-of-Life Care for Older Adults with Dementia during the COVID-19 Pandemic.

OBJECTIVES: End-of-life (EOL) care during the coronavirus disease 2019 (COVID-19) pandemic has been a concern under the overwhelming pressure of health care service systems. People with dementia often receive suboptimal EOL care; thus, they may be at particular risk of poor care quality during the COVID-19 pandemic. This study investigated the interaction between dementia and pandemic on the proxies' overall ratings and ratings for 13 indicators. DESIGN: A longitudinal study. SETTING AND PARTICIPANTS: Data were collected from 1050 proxies for deceased participants in the National Health and Aging Trends Study, a nationally representative sample of community-dwelling Medicare beneficiaries aged ≥65 years. Participants were included if they had died between 2018 and 2021. METHODS: Participants were categorized into 4 groups depending on the period of death (before vs during the COVID-19 pandemic) and having no vs probable dementia, as defined by a previously validated algorithm. The quality of EOL care was assessed through postmortem interviews with bereaved caregivers. Multivariable binomial logistic regression analyses were performed to examine the main effects of dementia and pandemic period, and the interaction between dementia and pandemic on ratings of quality indicators. RESULTS: A total of 423 participants had probable dementia at the baseline. People with dementia who died were less likely to talk about religion in the last month of life than those without dementia. Decedents during the pandemic were more likely to have an overall rating of care as being not excellent than those before the onset of the pandemic. However, the interaction between dementia and pandemic was not significant in the 13 indicators and the overall rating of EOL care quality. CONCLUSION AND IMPLICATIONS: Most EOL care indicators preserved the level of quality, regardless of dementia and the COVID-19 pandemic. Disparities in spiritual care may exist across people with and without dementia.

Impact of COVID-19 on care at the end of life during the first months of the pandemic from the perspective of healthcare professionals from different settings: a qualitative interview study (the CO-LIVE study).

OBJECTIVES: The objective of this study is to better understand how the COVID-19 outbreak impacted the different domains of the palliative care approach to end-of-life care from the perspective of healthcare professionals (HCPs) from different professions, working in different settings during the first months of the COVID-19 outbreak in the Netherlands. METHODS: An in-depth qualitative interview study among 16 HCPs of patients who died between March and July 2020 in different healthcare settings in the Netherlands. The HCPs were recruited through an online survey about end-of-life care. Maximum variation sampling was used. Data were analysed following the principles of thematic analysis. RESULTS: Several aspects impacted the quality of the palliative care approach to care at the end of life. First, COVID-19 was a new disease and this led to challenges in the physical domain of end-of-life care, for example, a lack of knowledge on how to manage symptoms and an unreliable clinical view. Second, the high workload HCPs experienced impacted the quality of end-of-life care, especially in the emotional, social and spiritual domains, since they only had time for urgent, physical care. Third, COVID-19 is a contagious disease and measures taken to prevent the spread of the virus hampered care for both patients and relatives. For example, because of the visiting restrictions, HCPs were not able to provide emotional support to relatives. Finally, the COVID-19 outbreak also had a potentially positive impact in the longer term, for example, more awareness of advance care planning and the importance of end-of-life care that includes all the domains. CONCLUSION: The palliative care approach, which is key to good end-of-life care, was often negatively influenced by the COVID-19 pandemic, predominantly in the emotional, social and spiritual domains. This was related to a focus on essential physical care and prevention of the spread of COVID-19.

Nursing students' experiences with patient death and palliative and end-of-life care: A systematic review and meta-synthesis.

AIM: To synthesise the experiences of nursing students encountering patient death and caring for patients under palliative care or at end-of-life and their families in clinical settings BACKGROUND: Nurses are pivotal in caring for dying patients and families. It has been reported that nursing students feel unprepared in caring for dying patients and handling patient death. Understanding their experiences would better inform how palliative care education can be improved and how students can be better supported in clinical settings. DESIGN: A qualitative systematic review and meta-synthesis METHODS: PubMed, Embase, CINAHL, PsycINFO, ProQuest and Google Scholar were searched for peer-reviewed articles and theses/dissertations published between 1 January 2012-25 Feb 2023. Qualitative studies of any design reporting nursing students' experiences of patient death, caring for patients under palliative care, at end-of-life, or with time-limiting diseases in clinical settings in English were included. Study quality was evaluated using the Critical Appraisal Skills Programme tool. Data were synthesised using Sandelowski and Barroso's 2-step framework through a meta-summary using thematic analysis, which were then integrated into meta-syntheses using an event timeline. RESULTS: The review included 71 studies from 26 countries (n = 1586 nursing students). The meta-summary contained 8 themes and 23 subthemes: (1) Communication experience with patients and families, (2) Satisfaction with care provided to patients and families, (3) Impact of the COVID-19 pandemic on death and dying, (4) Perceptions of death and dying, (5) Impact of death, (6) Nursing education on palliative end-of-life care, (7) Support systems and coping methods, (8) Learning outcomes. The meta-synthesis depicted nursing students' experiences before, during and after encountering dying patients, families and patient death. Suggestions for nursing faculty and clinical staff on how they could equip students with necessary skills and knowledge and support them in clinical settings were also provided. CONCLUSIONS: While caring for dying patients and families was beneficial to nursing students' learning and professional development, they encountered many challenges. Governments, clinical and academic nursing leaders must prioritise the integration of palliative care content into the curricula across nursing schools in face of increasing palliative and end-of-life care needs in patients. Nursing schools should ensure that students are adequately prepared by designing culturally and socioeconomically relevant curricula, integrating theoretical and experiential learning and offering students a thorough understanding of palliative and end-of-life care. Clinical staff and nursing instructors should support students emotionally and guide them in patient care.

Symptom Management and Support in Dying Patients with Cancer and Coronavirus Disease-19-A Register-Based Study.

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.

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.

An Overview of the Impact of the Covid-19 Pandemic on the Provision of Palliative Care.

The Sars-Cov-2 pandemic had an immeasurable impact on the provision of palliative care in Ireland, and continues to do so. Patients and families were affected by stringent infectious disease measures. Healthcare professionals were also impacted, with recent research demonstrating the psychological impact that the pandemic had on some of those working in palliative care during the pandemic. The services provided by palliative care services also shifted. Many patients opted to stay at home to receive end-of-life care or symptom management from their GP and community palliative homecare teams where possible. Palliative care services in the acute hospital setting were increasingly utilised to support teams to provide end-of-life care in a developing and challenging clinical environment. Communication technology was used to for multidisciplinary team meetings, to communicate with families and by community home care teams for some patient assessments. Our article outlines some of the major ways in which palliative care was impacted by the Sars-Cov-2 pandemic.

National and international non-therapeutic recommendations for adult palliative and end-of-life care in times of pandemics: A scoping review.

OBJECTIVE: The care of seriously ill and dying people is an important task, especially in times of pandemics and regardless of the patients' infection status. Before the SARS-CoV-2 pandemic, healthcare systems were not sufficiently prepared for the challenges of palliative and end-of-life care during a pandemic. The aim was to identify and synthesize relevant aspects and non-therapeutic recommendations of palliative and end-of-life care of seriously ill and dying people, infected and uninfected, and their relatives after one year into the pandemic to outline what actions, practices, and procedures were taken to deal with the pandemic and its consequences. METHOD: A scoping literature review following the methods of the PRISMA-ScR. The electronic literature search was conducted in 09/2020 and updated in 02/2021 using MEDLINE (Pubmed), with no restriction of publication date and eligibility criteria. In addition, a manual search was carried out. RESULTS: A total of 280 studies met the inclusion criteria and three main aspects have emerged. The reduction of physical contact due to the risk of infection severely limited the work of palliative care professionals and solutions had to be found to maintain palliative and end-of-life care structures. This has been accompanied by strict visitor restrictions and the need to support patients, relatives, and enable contact. The third relevant aspect is the integration of specialist palliative care expertise into other clinical settings. SIGNIFICANCE OF RESULTS: This scoping review demonstrates the need for basic palliative care training for every healthcare professional. It supports the importance of developing a national strategy for palliative care in pandemic times in every country, including the digitalization of the healthcare sector to offer telecommunication/telemedicine.

"I can't make all this work." End of life care provision in natural disasters: a qualitative study.

BACKGROUND: Natural disasters are becoming more frequent and severe and profoundly impact the end-of-life care experience, including service provision. There is a paucity of research examining healthcare workers' experiences in responding to care demands when disasters strike. This research aimed to fill this gap by exploring end-of-life care providers' perceptions of the impact of natural disasters on end-of-life care. METHODS: Between Feb 2021-June 2021 ten in-depth semi-structured interviews were conducted with healthcare professionals providing end-of-life care during recent natural disasters, COVID-19, and/or fires and floods. Interviews were audio-recorded, transcribed, and analysed using a hybrid inductive and deductive thematic approach. RESULTS: The overarching theme from the healthcare workers' accounts was of being unable to provide effective compassionate and quality care - "I can't make all this work." They spoke of the considerable burdens the system imposed on them, of being overextended and overwhelmed, having their roles overturned, and losing the human element of care for those at end-of-life. CONCLUSION: There is urgent need to pioneer effective solutions to minimise the distress of healthcare professionals in delivering end-of-life care in disaster contexts, and to improve the experience of those dying.

The clinical practice of palliative sedation in patients dying from COVID-19: a retrospective chart review.

BACKGROUND: Clinical experts experienced challenges in the practice of palliative sedation (PS) during the COVID-19 pandemic. Rapid deterioration in patients' situation was observed while the indications for starting PS seemed to differ compared to other terminal patients. It is unclear to which extent clinical trajectories of PS differ for these COVID patients compared to regular clinical practice of PS. OBJECTIVES: To describe the clinical practice of PS in patients with COVID versus non-COVID patients. METHODS: A retrospective analysis of data from a Dutch tertiary medical centre was performed. Charts of adult patients who died with PS during hospitalisation between March '20 and January '21 were included. RESULTS: During the study period, 73 patients received PS and of those 25 (34%) had a COVID infection. Refractory dyspnoea was reported as primary indication for starting PS in 84% of patients with COVID compared to 33% in the other group (p < 0.001). Median duration of PS was significantly shorter in the COVID group (5.8 vs. 17.1 h, p < 0.01). No differences were found for starting dosages, but median hourly dose of midazolam was higher in the COVID group (4.2 mg/hr vs. 2.4 mg/hr, p < 0.001). Time interval between start PS and first medication adjustments seemed to be shorter in COVID patients (1.5 vs. 2.9 h, p = 0.08). CONCLUSION: PS in COVID patients is characterized by rapid clinical deterioration in all phases of the trajectory. What is manifested by earlier dose adjustments and higher hourly doses of midazolam. Timely evaluation of efficacy is recommended in those patients.

End of life care during the COVID-19 pandemic: A qualitative study on the perspectives of nurses and nurse assistants.

AIM: To explore nurses' and nurse assistants' experiences of providing end-of-life care during the COVID-19 pandemic in Austria, Germany and Northern Italy. DESIGN: A qualitative explorative interview study. METHOD: Data were collected between August and December 2020 and analysed using content analysis. Healthcare professionals (nurses (n = 30), nurse coordinators (n = 6) and nurse assistants (n = 5)) from hospitals (n = 32) and long-term care facilities (n = 9) in Austria, Germany and Northern Italy were interviewed for this study. RESULTS: Five main categories were identified as follows: (i) end-of-life care involves love and duty, (ii) last wishes and dignity of the patient, (iii) communication with the family, (iv) organizational and religious aspects and (v) personal emotions. Results indicate that more training and guidelines are needed to prepare nurses and nurse assistants for end-of-life care during pandemics. PUBLIC CONTRIBUTION: This research can help prepare nurses and nurse assistants for end-of-life care in pandemics and will be of value for improving the institutional and government health policies. Furthermore, it can be of value in preparing training for healthcare professionals patient-relatives.

Preferences about place of end-of-life care and death of patients with life-threatening illnesses and their families: a protocol for an umbrella review.

INTRODUCTION: For most of history, the majority of people died at home surrounded by family. However, the global scenario has progressively changed towards hospital death and more recently in some countries back again towards home, with indication that COVID-19 may have further increased the number of home deaths. It is therefore timely to establish the state-of-the-art about people's preferences for place of end-of-life care and death, to understand the full spectrum of preferences, nuances and commonalities worldwide. This protocol describes the methods for an umbrella review which aims to examine and synthesise the available evidence regarding preferences about place of end-of-life care and death of patients with life-threatening illnesses and their families. METHODS AND ANALYSIS: We will search for relevant systematic reviews (quantitative and/or qualitative) in six databases from inception without language restrictions: PsycINFO, MEDLINE, EMBASE, CINAHL, PROSPERO and Epistemonikos. Following the Joanna Briggs Institute (JBI) methodology for umbrella reviews, eligibility screening, data extraction and quality assessment (using the JBI Critical Appraisal Checklist) will be done by two independent reviewers. We will report the screening process using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses flow diagram. Study double-counting will be reported using the Graphical Representation of Overlap for OVErviews tool. A narrative synthesis will include 'Summary of Evidence' tables to address five review questions (distribution of preferences and reasons, influencing variables, place of care vs place of death, changes over time, congruence between preferred and actual places), grading the evidence on each question using Grading of Recommendations Assessment, Development and Evaluation (GRADE) and/or GRADE-Confidence in the Evidence from Reviews of Qualitative research. ETHICS AND DISSEMINATION: This review does not require ethical approval. The results will be presented at conferences and published in a peer-reviewed journal. PROSPERO REGISTRATION NUMBER: CRD42022339983.

[Nursing and end-of-life care at home in a health crisis]. / Soins infirmiers et fin de vie à domicile en période de crise sanitaire.

The Covid-19 pandemic led healthcare professionals to reconsider their work organization and some of their practices, in order to respond to the health emergency and the importance of care needs. While hospital teams managed the most serious and complex health situations, home care workers also made significant efforts to redeploy their rounds, to take care of and accompany patients at the end of their lives and their loved ones while managing hygiene constraints. A nurse looks back on one of these cases and the questions it raised.

Staff Perceptions of Dying and Death in a Pediatric Cardiac Intensive Care Unit During COVID-19.

BACKGROUND: Strict visitor restrictions during the COVID-19 pandemic have been associated with staff moral distress in numerous clinical settings, yet little is known about effects on perceptions of pediatric end-of-life care. OBJECTIVE: To determine the effect of COVID-19 visitor restrictions on perceptions of quality of dying and death. METHODS: This was a cross-sectional survey of interdisciplinary staff caring for dying children in a cardiac intensive care unit with flexible visitation allowances compared with published policies reported in the literature at the time. RESULTS: No significant difference in perceptions of quality of dying and death was found between the prepandemic and pandemic periods despite similar clinical care provision. The relatively less stringent allowances at end of life did not adversely affect staff risk for infection. CONCLUSIONS: The findings support affording some flexibility to visitation at end of life, which may mitigate negative staff perceptions of quality of dying and death. With the profound effects of COVID-19 on end-of-life care provision, these results may have implications for future global challenges.

Provision of palliative and end-of-life care in UK care homes during the COVID-19 pandemic: A mixed methods observational study with implications for policy.

Introduction: Little consideration has been given to how the provision of palliative and end-of-life care in care homes was affected by COVID-19. The aims of this study were to: (i) investigate the response of UK care homes in meeting the rapidly increasing need for palliative and end-of-life care during the COVID-19 pandemic and (ii) propose policy recommendations for strengthening the provision of palliative and end-of-life care within care homes. Materials and methods: A mixed methods observational study was conducted, which incorporated (i) an online cross-sectional survey of UK care homes and (ii) qualitative interviews with care home practitioners. Participants for the survey were recruited between April and September 2021. Survey participants indicating availability to participate in an interview were recruited using a purposive sampling approach between June and October 2021. Data were integrated through analytic triangulation in which we sought areas of convergence, divergence, and complementarity. Results: There were 107 responses to the survey and 27 interviews. We found that (i) relationship-centered care is crucial to high-quality palliative and end-of-life care within care homes, but this was disrupted during the pandemic. (ii) Care homes' ability to maintain high-quality relationship-centered care required key "pillars" being in place: integration with external healthcare systems, digital inclusion, and a supported workforce. Inequities within the care home sector meant that in some services these pillars were compromised, and relationship-centered care suffered. (iii) The provision of relationship-centered care was undermined by care home staff feeling that their efforts and expertise in delivering palliative and end-of-life care often went unrecognized/undervalued. Conclusion: Relationship-centered care is a key component of high-quality palliative and end-of-life care in care homes, but this was disrupted during the COVID-19 pandemic. We identify key policy priorities to equip care homes with the resources, capacity, and expertise needed to deliver palliative and end-of-life care: (i) integration within health and social care systems, (ii) digital inclusivity, (iii) workforce development, (iv) support for care home managers, and (v) addressing (dis)parities of esteem. These policy recommendations inform, extend, and align with policies and initiatives within the UK and internationally.