The impact of home mechanical ventilation on the time and manner of death for those with Motor neurone disease (MND): A qualitative study of bereaved family members.

Motor neurone disease (MND) is a progressive neurodegenerative disorder which is ultimately terminal. It causes muscle weakness which can lead to the need for assistance in breathing, for some with the disease. This paper draws on qualitative research using semi-structured interviews with 32 people bereaved by the death of a family member with MND who was dependent on home mechanical ventilation, from across the United Kingdom. Interviews explored how the end-of-life of a person who had used non-invasive ventilation to assist their breathing was experienced by participants, who had cared about, and for them. Four themes are used to examine the impact of dependent ventilation technology on the experience of dying on the part of bereaved family members. Themes are: accompanied dying, planned withdrawal of ventilation, blurred time of death, time post-death. The perception and experience of time was a key component across all four themes. Ventilator technology played a critical role in sustaining life, but it could also contribute to a complex dynamic where the realities of death were mediated or obscured. This raises ethical, emotional, and existential considerations, both for the individuals receiving ventilator support and their families, as well as for healthcare professionals involved in end-of-life care.

Associations between perceived interpersonal support and aggressiveness of care in the last month of life among patients with advanced cancer.

PURPOSE: To determine quality of life (QoL) domains in the months leading up to death associated with the receipt of aggressive care in the last month of life among patients with advanced cancer. METHODS: A multisite, prospective cohort study conducted from January 2010 to May 2015 of 59 patients with advanced cancer (distant metastases and/or progression of disease following at least first-line chemotherapy) and poor prognosis (≤ 6 months) followed through death. At baseline, a median of 4 months from death, the McGill Quality of Life Questionnaire measured overall QoL and four QoL domains (i.e., interpersonal support, physical well-being, psychological, and existential). Postmortem data were collected via medical chart review and nurse/caregiver report and combined to capture the aggressiveness of end-of-life (EoL) care in patients' last month of life. Aggressive EoL care was defined as any receipt of care in an intensive care unit, being on a ventilator, or chemotherapy in the last month of life. RESULTS: Patients with higher interpersonal support domain scores (i.e., rating the world as more "caring and responsive" to their needs and their felt support as more complete) received significantly less aggressive care in their last month of life (odds ratio = 0.39, 95% confidence interval 0.20 to 0.75, p = 0.004). CONCLUSION: Perceived interpersonal support is the only QoL domain assessed that was associated with aggressiveness of care in the last month of life for patients with advanced cancer. Prioritizing caring and responsive relationships for patients may decrease receipt of aggressive EoL care.

"Veterinary medicine is not finished when I have diagnosed an incurable disease, that's when it starts for me." A qualitative interview study with small animal veterinarians on hospice and palliative care.

In the wake of recent medical developments in small animal practice, curing animals of their illnesses and restoring their health can be realized better than ever before. However, the growing medical possibilities are also leading to an increase in demand for better care for patients suffering from terminal illnesses. Consequently, the field of animal hospice and palliative care has become increasingly available, enabling veterinarians to optimize the quality of life of patients, such as dogs and cats, who no longer have a prospect of full recovery. Using qualitative, semi-structured interviews with 20 small animal veterinarians involved in hospice and palliative care, we investigated the factors that motivate veterinarians to become involved in hospice and palliative care and explored the importance of relationships, communication, time and infrastructure in this area. Findings show that personal experiences with their own pets or during training or work life motivated veterinarians to provide this service. Although veterinarians highlighted the importance of empathetic-driven relationships, they were aware that keeping an emotional distance from the patient and caregiver is significant to provide successful care. Further, veterinarians emphasized their high investment of time that resulted primarily from the increased frequency and provided opportunities to communicate with caregivers. The overall conclusion is that having time for patients and the patients' caregivers is one of the most important aspects of work in this field. However, as it will be also shown, veterinarians must consider aspects of self-care management by reflecting on their own time and energy resources while caring for animals and their caregivers.

An Authentic Learning Experience for Medical Students on Conducting a Family Meeting.

BACKGROUND: Medical schools often lack training for serious illness conversations with patients and caregivers. We developed a curriculum in our elective Transitioning to Residency medical student course, focused on end-of-life discussions. This paper provides an overview of the curriculum and outcomes from an advanced preparation assignment and student evaluations. METHODS: The curriculum included a "hands-on" skills session delivered via Zoom. Small groups of students (3-4) assumed roles on an interprofessional team (Intensivist, cardiologist, nurse, social worker). They met with two adult children, played by palliative/geriatric clinical staff, of a 79-year-old patient with a complex cardiac history and on ventilator support to address: (1) the patient's status, (2) goals of care, and (3) withdrawal of ventilator support. Using a flipped classroom format, students reviewed the case, role assignments, a family meeting webinar, and other materials in advance. They completed a survey reflecting on the upcoming family meeting. Afterwards, students evaluated the session. RESULTS: Eighty students (19.6%) participated in 2021 and 2022. The reflection survey shows students agreed the patient's prognosis was poor and decision-making should be shared. They anticipated difficulty accepting prognosis, discordance between family members and/or the team, and challenging emotions. Results show a difference between the anticipated roles of the assigned physicians compared to the other disciplines. Post-session evaluations ranged from 4.7 to 4.9/5 (1 = strongly disagree, 5 = strongly agree). CONCLUSION: The pre-session reflection helped students prepare for their roles. The training was well received, and we hope it prepares students to take on serious illness discussions during residency.

The gap between expectations and reality in advance care planning in long-term care settings.

BACKGROUND: Advance care planning (ACP) is an integral part of good quality end-of-life care. This study aimed to explore the role and practice of ACP among health and social care professionals (HSCPs) in a community long-term care facility. METHODS: This was a mixed-methods study. The study purposefully sampled 12 HSCPs from one community long-term care facility in Macao, China. All data were collected in November 2022. RESULTS: Some participants had discussed with terminally ill residents or with families in terms of end-of-life care preferences, the average correct rate of ACP knowledge was 67.4%. Interview data showed that HSCPs were primarily concerned with information-giving. The responsibility of decision-making was found to have been placed predominantly on family members of the residents. CONCLUSION: Study findings raised awareness in that the execution of ACP has remained in discord with the expectations in practicing ACP. The study illuminated that the perceived sense of responsibility among HSCPs was influenced by the potential legal risks involved and consequentially impacted on the adherence to individual's decisions.

Nurses' attitude toward futile treatment and its relationship with missed care at the end of life.

BACKGROUND: Avoiding futile treatment for patients at the end of life is among one of the care challenges of nurses in intensive care units (ICUs). AIMS: This study aimed to determine the attitude of intensive care unit nurses toward futile treatment and its relationship with missed care for patients at the end of life. METHOD: This cross-sectional study was conducted on 307 ICU nurses. Eleven teaching hospitals were selected from three Iranian provinces, Zanjan Province, East Azerbaijan and West Azerbaijan, in 2021. The data were collected using The Attitudes Toward Futile Treatment Scale (ATFTS) and The Missed Nursing Care Survey (MISSCARE Survey) as self-reports. RESULTS: According to the obtained results, 94.8% of the nurses agreed that futile treatment should not be performed. However, 97.7% of the nurses reported that missed care occurs less for patients at the end of life. The correlation between the MISSCARE Survey's total scale and the ATFTS's total scale was positive and statistically significant (r =.11). CONCLUSION: This research contributes to understanding nurses' attitudes toward futile treatment. Nurses oppose futile treatment, so obstacles to avoiding it should be eliminated. This attitude does not have a significant impact on nursing care quality or missed care for patients at the end of life, but it can lead to enduring distress for nurses. It is recommended to study the reasons for futile treatment, and its link to nurses' mental and physical health.

End-of-life preferences of people with advanced chronic obstructive pulmonary disease.

OBJECTIVES: To identify end-of-life preferences of people with advanced chronic obstructive pulmonary disease (COPD) and to compare characteristics between those who wish to discuss the end-of-life and those who do not. METHODS: An analysis of the baseline data of a randomised controlled trial was performed including people with COPD GOLD stages III-IV or former quadrant D with modified Medical Research Council questionnaire grade ≥2, after hospital discharge following an exacerbation. Participants were interviewed using the End-of-Life Preferences Interview. RESULTS: A total of 165 individuals (53% men; 68±9 years old; 55% care dependent) were included. Most participants wished to take part in shared decision-making (78%), to be informed about a short life expectancy (82%), to discuss the end-of-life (82%), to have loved ones around at death (87%) and to choose when to die (70%). They also reported accepting opioids (74%). Preferences for who to provide physical care, the place, consciousness and atmosphere at death as well as life-sustaining treatments were heterogeneous. Participants who wanted to discuss the end-of-life had a significantly higher educational level (p=0.030) and worse health status than participants who did not (p=0.007). CONCLUSIONS: End-of-life preferences of people with advanced COPD were heterogeneous, however, most wished to discuss it, especially those with higher educational level and worse health status. TRIAL REGISTRATION NUMBER: NTR3940.

Legacy in End-of-Life Care: A Concept Analysis.

Comprehending the significance of legacy in end-of-life (EoL) situations helps palliative care professionals enhance person-centered outcomes for those with a life-threatening illness and their families. Our purpose was to conduct a concept analysis of legacy in EoL care. By employing Walker and Avant's approach, we identified the concept's defining characteristics. Subsequently, we established the antecedents, consequences, and empirical referents. After conducting a thorough review of titles and abstracts, a total of 30 publications were analyzed. These articles were sourced from three databases (CINAHL, Medline via PubMed, and Scopus) from 2002 to 2023. Our analysis identified several core attributes of legacy: (a) leave behind something of value that transcends death; (b) determine how people want to be remembered; (c) build and bestow across generations; (d) integrate advance care planning through EoL conversations and shared decision-making; and (e) develop strategies of dignity-conserving care. The consequences are related to improvements in spiritual and subjective well-being; coping with inevitable EoL existential issues; decreases in EoL suffering; engendering self-awareness, hope, gratitude, and peace; achieving and maintaining dignity; creating good memories; promoting mutually constructive and transformative relationships; and fostering the adjustment of bereaved people. Nevertheless, further effort is required to implement the key attributes of legacy that form the basis for creating legacy-oriented interventions near the EoL.

Exploring the contextual assumptions, interventions and outcomes of digital advance care planning systems: A theory of change approach to understand implementation and evaluation.

BACKGROUND: Digital advance care planning systems are used internationally to document and share patients' wishes and preferences to inform care delivery. However, their use is impeded by a limited understanding of factors influencing implementation and evaluation. AIM: To develop mid-range programme theory to account for technological, infrastructure and human factor influences on digital advance care planning systems. DESIGN: Exploratory qualitative research design incorporating Theory of Change workshops that explored contextual assumptions affecting digital advance care planning in practice. A mid-range programme theory was developed through thematic framework analysis using the Non-adoption, Abandonment, Scale-up, Spread and Sustainability (NASSS) framework, generating a conceptual model depicting contextual assumptions, interventions and outcomes influencing implementation. PARTICIPANTS: A total of 38 participants (16 from London, 14 from West Yorkshire and 8 online) including patients, carers and health and care professionals (including those with commissioning responsibilities). RESULTS: A conceptual model was generated depicting five distinct components relating to digital advance care planning system use: (sociocultural, technical and structural prerequisites; recognition of the clinical need for conversation; having conversations and documenting decisions; accessing, actioning and amending; and using data to support evaluation, use and implementation). There were differences and uncertainty relating to what digital advance care planning systems are, who they are for and how they should be evaluated. CONCLUSIONS: Digital advance care planning lacks shared beliefs and practices, despite these being essential for complex technology implementation. Our mid-range programme theory can guide their further development and application by considering technological, infrastructure and human factor influences to optimise their implementation.

Palliative Care and the Self-Fulfilling Prophecy in Stroke Patients: is There Anything to Fear? A Retrospective Study of Patients Who Died During Hospitalization in a Quaternary Care Hospital.

BACKGROUND AND PURPOSE: Primary palliative care (PC) aims to improve the quality of life for patients with acute ischemic stroke but is often misinterpreted as withdrawal of care. The self-fulfilling prophecy withdrawal bias is feared in this context of PC's early implementation. This study evaluates stroke patients who died in the hospital to determine the impact of PC evaluation. METHODS: A retrospective descriptive analysis of patients who died from acute ischemic stroke was conducted. The study included patients aged ≥18 years admitted to the Stroke Unit of a quaternary hospital in Brazil from January 2017 to December 2018. The impact of PC assessment on outcomes was analyzed, with significance set at 5%. RESULTS: Among the patients who died during hospitalization as a result of an ischemic stroke (n = 77), 39 (%) were assessed by the palliative care team. There was no difference in the total length of stay or duration of antibiotic therapy. Logistic regression corrected for significant variables from the univariate analysis revealed that PC evaluation was associated with a 31-fold increase in opioid use (P < 0.001), a nearly 14-fold increase in discharges to the ward, and a threefold reduction in ICU length of stay (P = 0.011). CONCLUSION: PC team involvement was associated with higher rates of discharge to the floors, inferring more time spent with family and increased opioid use, suggesting better symptom control, without reducing the overall length of stay or duration of antibiotic therapy. This underscores that PC does not equate to withdrawal of care.

End-of-Life Costs in Cancer Patients: A Systematic Review.

OBJECTIVES: Identify the costs of an oncology patient at the end of life. METHODS: A systematic literature review was conducted by screening Embase, PubMed and Lilacs databases, including all studies evaluating end-of-life care costs for cancer patients up to March 2024. The review writing followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. The quality of the included studies was assessed using the Drummond checklist. The protocol is available at PROSPERO CRD42023403186. RESULTS: A total of 733 studies were retrieved, and 43 were considered eligible. Among the studies analyzed, 41,86% included all types of neoplasms, 18.60% of lung neoplasm, All articles performed direct cost analysis, and 9.30% also performed indirect cost analysis. No study evaluated intangible costs, and most presented the macrocosting methodology from the payer's perspective. The articles included in this review presented significant heterogeneity related to populations, diagnoses, periods considered for evaluation of end-of-life care, and cost analyses. Most of the studies were from a payer perspective (74,41%) and based on macrocosting methodologies (81,39%), which limit the use of the information to evaluate variabilities in the consumption of resources. CONCLUSIONS: Considering the complexity of end-of-life care and the need for consistent data on costs in this period, new studies, mainly in low- and middle-income countries with approaches to indirect and intangible costs, with a societal perspective, are important for public policies of health in accordance with the trend of transforming value-based care, allowing the health care system to create more value for patients and their families.

Development and Feasibility Evaluation of a Family-Centred Neonatal End-of-Life Care Protocol.

AIM: To develop a family-centred end-of-life care protocol and evaluate its feasibility. DESIGN: The draft protocol was created by integrating literature review results and existing protocols and interviewing bereaved parents. A Delphi study and an experts' review were conducted to refine the draft, followed by feasibility testing with neonatal intensive care unit nurses. RESULTS: A 71-item protocol based on an integrated end-of-life care model and the family-centred care concept was developed, comprising three sections: principal guidelines, communication during end-of-life care and five substeps (4, 17 and 71 items, respectively) according to changes in an infant's condition. The feasibility was confirmed by an increase in competency and a positive attitude towards infant end-of-life care participants who completed the protocol education. CONCLUSION: The protocol was feasible and improved nurses' competency and attitude in providing end-of-life care for infants and parents requiring support due to the loss of their infants. It can positively impact the well-being of parents who have experienced the loss of their infants in neonatal intensive care units and enhance family-centred care within the units. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Application of the family-cantered end-of-life care could support infants' dying process and improve bereaved parents' quality of life in neonatal intensive care units. IMPACT: This study increased neonatal end-of-life nursing needs' awareness among nurses and parents during bereavement. It offered preliminary evidence regarding the feasibility of a neonatal end-of-life care protocol developed in this study. REPORTING METHOD: AGREE Reporting Checklist 2016. PATIENT OR PUBLIC CONTRIBUTION: We interviewed bereaved parents to develop the draft protocol and involved neonatal care experts for the Delphi study and neonatal nurses (who would use the protocol) as feasibility test subjects. TRIAL REGISTRATION: This was a doctoral dissertation and did not require protocol registration as the feasibility test involved a single neonatal intensive care unit.

Experiences and access of palliative and end of life care for older people from minority ethnic groups: a scoping review.

BACKGROUND: Many older people from minority ethnic groups experience inequalities towards the end of life, including barriers to accessing palliative care. With levels of international migration increasing, there is a need to understand these differences and consider the needs of minority ethnic groups in healthcare policies. This review aimed to map evidence on how older people from minority ethnic groups access and utilise palliative and end of life care, preferences for palliative and end of life care, experiences of palliative and end of life care, and how this varies between minority ethnic groups in different countries, and with different health conditions. METHODS: Scoping review, following Joanna Briggs Institute (JBI) guidance. Searches of eight online databases (MEDLINE, Embase, Web of Science, CINAHL, PsycInfo, Assia, Scopus, and the Cochrane Library) and grey literature were undertaken in 2024. Qualitative sources that focused on older people from minority ethnic groups' and carers' access to and use of palliative and end of life care were included, as well as those focusing on healthcare professionals' experiences. RESULTS: Twenty-three sources were included in the review, the majority of which were interview studies from the USA. Findings reflect a range of preferences, inequalities, facilitators and barriers to accessing palliative and end of life care, with themes relating to: (1) Knowledge of hospice and palliative care, (2) societal and structural issues, (3) language and health literacy, (4) migratory experiences, (5) trust in healthcare services and professionals, (6) religion and hope, and (7) cultural values. CONCLUSIONS: This review identified areas for healthcare providers to consider developing more culturally appropriate palliative and end of life care practice, including building trust and improving communication, sharing information, reducing language barriers, addressing stigma, and, if relevant, acknowledging the importance of culture and religion. Further qualitative research from an intersectional perspective, such as geographical location or socio-economic status, rather than race, ethnicity, and culture alone, is needed in more diverse geographical settings and on specific health conditions.

Adopting a 'community of practice' between palliative and dementia care nurses.

Dementia usually occurs as a result of brain disease and, while it is usually chronic or progressive in nature, it has not traditionally been conceptualised as a terminal or life-limiting syndrome. However, the median survival time for people with dementia is between 3.5 years and 4.5 years from symptom onset to death, although this varies depending at which stage the dementia is diagnosed and its cause. As such, it has long been recognised that people with dementia and their family carers have palliative care needs equal to those of patients with cancer. However, a palliative approach to dementia care requires both the dementia and palliative care workforces to fully understand the needs of people with dementia and their families towards the end of life. This article describes the development of a 'community of practice' where healthcare professionals from dementia and palliative care services shared their practice and learned from each other in a safe and supportive environment.

Motivations of family advisors in engaging in research to improve a palliative approach to care for persons living with dementia: an interpretive descriptive study.

BACKGROUND: A Strategic Guiding Council (SGC) was created within a Family Carer Decisions Support study, to engage family carers of persons with advanced dementia as advisors to inform the design and implementation of the study. The SGC consists of an international group of family advisors from Canada, the Republic of Ireland, the United Kingdom, the Netherlands, and the Czech Republic. There are limited studies that have explored the integration of Patient and Public Involvement (PPI) in dementia research, end-of-life care and long-term care. Therefore, this study explores PPI engagement in health research with family carers to understand further their interest in being involved in the SCG within the FCDS intervention which is focused on supporting caregivers to make decisions about end-of-life care for residents with advanced dementia. METHODS: This study utilized an interpretive descriptive design and explored the motivations of ten family advisors from Canada, the Republic of Ireland, the United Kingdom, and the Netherlands in being part of the SGC. Semi-structured interviews were conducted by phone or videoconferencing and were recorded, transcribed, and analyzed using thematic analysis. RESULTS: Three themes generated from the findings of the study were (1) engaging in reciprocal learning; (2) using lived experience to support other family carers; and (3) creating a collective momentum for advocacy and change. CONCLUSIONS: Family carers motivations to being part of the SCG was driven by their intent to help carers navigate the health system and to create a psychosocial support system for other carers experiencing end-of-life with their loved ones. Being part of the SCG provided a benefit to family carers which provided a venue for them to contribute meaningful information from their experience, learn from other health professionals, research and other advisors and an avenue for advocacy work to improve access to end-of-life care supports through education. To our knowledge, this is the first study that explores the motivations of an international group of family advisors' engagement in health research to promote integration of a palliative approach to dementia care in long-term care homes. This study further contributes to the literature from an international perspective the importance of PPI in research. Further research is warranted that explores PPI in research to improve access to end-of-life supports.

Patient and public involvement (PPI) in research has been growing worldwide and ensures that research conducted is relevant to the needs of patients. Within the Family Carer Decisions Support study, we created a Strategic Guiding Council (SGC) to engage family carers of persons with advanced dementia as advisors to improve access to a palliative approach to care. The SGC includes family advisors from Canada, the Republic of Ireland, the United Kingdom, the Netherlands, Italy and the Czech Republic. The goal of the strategy was to engage with family advisors in research activities to improve access to a palliative approach and quality of care provided to people with dementia receiving end-of-life care. Including patients and family in research is extremely important, therefore our aim in this study was to explore family advisors' motivations to engaging in the SGC. Family advisors reported encountering challenges with navigating the health system with end-of-life care and they chose to participate in the SGC to support other carers who are experiencing a similar situation. Being part of the SGC also provided the family advisors with an avenue to advocate on the importance of improving access to end-of-lifesupports and the opportunity to learn from other advisors, health professionals and researchers.

"Hospice Care Could Be a Compassionate Choice": ChatGPT Responses to Questions About Decision Making in Advanced Cancer.

Background: Patients with cancer use the internet to inform medical decision making. Objective: To examine the content of ChatGPT responses to a hypothetical patient question about decision making in advanced cancer. Design: We developed a medical advice-seeking vignette in English about a patient with metastatic melanoma. When inputting this vignette, we varied five characteristics (patient age, race, ethnicity, insurance status, and preexisting recommendation of hospice/the opinion of an adult daughter regarding the recommendation). ChatGPT responses (N = 96) were coded for mentions of: hospice care, palliative care, financial implications of treatment, second opinions, clinical trials, discussing the decision with loved ones, and discussing the decision with care providers. We conducted additional analyses to understand how ChatGPT described hospice and referenced the adult daughter. Data were analyzed using descriptive statistics and chi-square analysis. Results: Responses more frequently mentioned clinical trials for vignettes describing 45-year-old patients compared with 65- and 85-year-old patients. When vignettes mentioned a preexisting recommendation for hospice, responses more frequently mentioned seeking a second opinion and hospice care. ChatGPT's descriptions of hospice focused primarily on its ability to provide comfort and support. When vignettes referenced the daughter's opinion on the hospice recommendation, approximately one third of responses also referenced this, stating the importance of talking to her about treatment preferences and values. Conclusion: ChatGPT responses to questions about advanced cancer decision making can be heterogeneous based on demographic and clinical characteristics. Findings underscore the possible impact of this heterogeneity on treatment decision making in patients with cancer.

Influence of Hospice Palliative Care on Medical Service Usage in Prolonged Mechanical Ventilation Cases: A Nationwide Cohort Study.

BACKGROUND: Numerous studies have demonstrated that hospice palliative care interventions for cancer patients can reduce health care utilzation. In Taiwan, 20-25% of patients who require mechanical ventilation are using prolonged mechanical ventilation (PMV); however, only a limited number of studies have addressed the effectiveness of hospice palliative care for these patients. This study investigated the impact of hospice palliative care utilization on medical utilization among subjects using PMV. METHODS: By using the health insurance database of a nationwide population-based study, we identified subjects who had been on mechanical ventilation for > 21 d, were age ≥18 y between 2009 and 2017, and had received hospice palliative care. The control group was formed through 1:1 matching by using propensity scoring after excluding patients who had participated in palliative care for <15 d or for >181 d. Furthermore, we used a conditional logistic regression analysis to investigate the incidence of ICU admission, emergency department presentation, and cardiopulmonary resuscitation within 14 d before death. RESULTS: A total of 186,533 new subjects receiving PMV age ≥ 18 y were admitted between 2009 and 2017. In addition, the number of subjects receiving palliative care increased annually, rising from 0.6% in 2009 to 41.33% in 2017. The emergency department visits (odds ratio [OR] 0.68, 95% CI 0.63-0.74), ICU admission (OR 0.59, 95% CI 0.53-0.66), cardiopulmonary resuscitation (OR 0.40, 95% CI 0.35-0.46), and total hospitalization cost ($1,319.91 ± $1,821.66 versus $1,544.37 ± $2,309.27 [$USD], P < .001) were significant lower in the palliative care group. CONCLUSIONS: Subjects undergoing PMV while receiving hospice palliative care experienced significant reductions in total hospitalization costs, ICU admissions, cardiopulmonary resuscitation, and medical expenses within 14 d before death.