Anticancer therapy at end-of-life: A retrospective cohort study.

BACKGROUND: A significant proportion of patients with incurable cancer receive systemic anticancer therapy (SACT) within their last 30 days of life (DOL). The treatment has questionable benefit, nevertheless is considered a quality indicator of end-of-life (EOL) care. This retrospective cohort study aims to investigate the rates and potential predictors of SACT and factors associated with SACT within the last 30 DOL. The study also evaluates the scope of Eastern Cooperative Oncology Group (ECOG) performance status and the modified Glasgow prognostic score (mGPS) as decision-making tools for oncologists. PATIENTS AND MATERIAL: This review of medical records included 383 patients with non-curable cancer who died between July 2018 and December 2019. Descriptive statistics with Chi-squared tests and regression analysis were used to identify factors associated with SACT within the last 30 DOL. RESULTS: Fifty-seven (15%) patients received SACT within the last 30 DOL. SACT within 30 last DOL was associated with shorter time from diagnosis until death (median 234 days vs. 482, p = 0.008) and ECOG score < 3 30 days prior to death (p = 0.001). Patients receiving SACT during the last 30 DOL were more likely to be hospitalised and die in hospital. ECOG and mGPS score were stated at start last line of treatment only in 139 (51%) and 135 (49%) respectively. INTERPRETATION: Those with short time since diagnosis tended to receive SACT more frequently the last 30 DOL. The use of mGPS as a decision-making tool is modest, and there is lack in documentation of performance status.

Prognostic awareness and prognostic information preferences among advanced cancer patients in Kenya.

BACKGROUND:  Cancer is the third leading cause of death in Kenya. Yet, little is known about prognostic awareness and preferences for prognostic information. AIM:  To assess the prevalence of prognostic awareness and preference for prognostic information among advanced cancer patients in Kenya. SETTING:  Outpatient medical oncology and palliative care clinics and inpatient medical and surgical wards of Moi Teaching and Referral Hospital (MTRH) in Eldoret, Kenya. METHODS:  The authors surveyed 207 adults with advanced solid cancers. The survey comprised validated measures developed for a multi-site study of end-of-life care in advanced cancer patients. Outcome variables included prognostic awareness and preference for prognostic information. RESULTS:  More than one-third of participants (36%) were unaware of their prognosis and most (67%) preferred not to receive prognostic information. Increased age (OR = 1.04, 95% CI: 1.02, 1.07) and education level (OR: 1.18, CI: 1.08, 1.30) were associated with a higher likelihood of preference to receive prognostic information, while increased symptom burden (OR= 0.94, CI: 0.90, 0.99) and higher perceived household income levels (lower-middle vs low: OR= 0.19; CI: 0.09, 0.44; and upper middle- or high vs low: OR= 0.22, CI: 0.09, 0.56) were associated with lower odds of preferring prognostic information. CONCLUSION:  Results reveal low levels of prognostic awareness and little interest in receiving prognostic information among advanced cancer patients in Kenya.Contribution: Given the important role of prognostic awareness in providing patient-centred care, efforts to educate patients in Kenya on the value of this information should be a priority, especially among younger patients.

How to approach patients and families at the end of life.

Healthcare practitioners are regularly faced with treating patients at the end of their life, and this can be very daunting. This article hopes to help the practitioner have an approach to managing end-of-life care that makes it less distressing. The symptoms at the end-of-life include delirium and/or agitation, breathing changes, skin changes, sleeping more, decrease in need for food and drink, incontinence, and increased secretions. These symptoms are discussed and practical ways of management are given. The article further discusses how to approach the difficult conversation with the family and gives guidance as to what needs to be discussed. A number of tips are discussed on how to prepare the family to handle a death at home. It is essential to look at coping mechanisms and selfcare for practitioners dealing with end-of-life care as the death of a patient not only affects the family but also the practitioner.

Trajectories of medical care expenditure in the last year of life associated with long-term care utilization in frail older adults: A retrospective cohort study.

BACKGROUND: Medical care and long-term care utilization in the last year of life of frail older adults could be a key indicator of their quality of life. This study aimed to identify the medical care expenditure (MCE) trajectories in the last year of life of frail older adults by investigating the association between MCE and long-term care utilization in each trajectory. METHODS: The retrospective cohort study of three municipalities in Japan included 405 decedents (median age at death, 85 years; 189 women [46.7%]) from a cohort of 1,658 frail older adults aged ≥65 years who were newly certified as support level in the long-term care insurance program from April 2012 to March 2013. This study used long-term care and medical insurance claim data from April 2012 to March 2017. The primary outcome was MCE over the 12 months preceding death. Group-based trajectory modeling was conducted to identify the MCE trajectories. A mixed-effect model was employed to examine the association between long-term care utilization and MCE in each trajectory. RESULTS: Participants were stratified into four groups based on MCE trajectories over the 12 months preceding death as follows: rising (n = 159, 39.3%), persistently high (n = 143, 35.3%), minimal (n = 56, 13.8%), and descending (n = 47, 11.6%) groups. Home-based long-term care utilization was associated with increased MCE in the descending trajectory (coefficient, 1.48; 95% confidence interval [CI], 1.35-1.62). Facility-based long-term care utilization was associated with reduced MCE in the rising trajectory (coefficient, 0.59; 95% CI, 0.50-0.69). Both home-based (coefficient, 0.92; 95% CI, 0.85-0.99) and facility-based (coefficient; 0.53; 95% CI, 0.41-0.63) long-term care utilization were associated with reduced MCE in the persistently high trajectory. CONCLUSIONS: These findings may facilitate the integration of medical and long-term care models at the end of life in frail older adults.

The interpersonal conversation is also a medical task.

Existential suffering refers to the distress arising from an inner realisation that life has lost its meaning or when life is threatened by disease. Compassionate and conscious conversation conducted by healthcare professionals is a way to alleviate existential suffering. In this review, we present a simple conversation tool which can be used to structure and build experience in end-of-life conversations and alleviation of existential suffering. The tool aims for patients to feel dignified and better understood in their existential questions and for doctors to feel better equipped in helping the patients with their suffering.

Patshitinikutau Natukunisha Tshishennuat Uitshuau (a place for Elders to spend their last days in life): a qualitative study about Innu perspectives on end-of-life care.

BACKGROUND: Indigenous palliative persons and their families often have different values, spiritual traditions, and practices from Western culture and Canadian health systems. Additionally, many healthcare policies and practices have been established without adequate consultation of the Indigenous populations they are meant to serve. This can result in barriers to Innu receiving culturally safe end-of-life care. Innu community leaders from Sheshatshiu, Labrador, have identified a need for further research in this area. The purpose of this study is to: (1) describe the cultural and spiritual practices related to death and dying of the Innu in Sheshatshiu; (2) identify aspects of current end-of-life care delivery that serve and/or fail to meet the cultural and spiritual needs of the Innu in Sheshatshiu; and (3) explore ways to integrate current end-of-life care delivery practices with Innu cultural and spiritual practices to achieve culturally safer care delivery for the Innu. METHODS: This qualitative patient-oriented research study was co-led by Innu investigators and an Innu advisory committee to conduct semi-structured interviews of 5 healthcare providers and 6 decision-makers serving the community of Sheshatshiu and a focus group of 5 Innu Elders in Sheshatshiu. Data was analyzed thematically from verbatim transcripts. The codebook, preliminary themes, and final themes were all reviewed by Innu community members, and any further input from them was then incorporated. Quotations in this article are attributed to Innu Elders by name at the Elders' request. RESULTS: The findings are described using eight themes, which describe the following: relationships and visitation support a "peaceful death"; traditional locations of death and dying; the important role of friends and community in providing care; flexibility and communication regarding cultural practices; adequate and appropriate supports and services; culturally-informed policies and leadership; and Innu care providers and patient navigators. CONCLUSIONS: The Innu in Sheshatshiu have a rich culture that contributes to the health, care, and overall well-being of Innu people approaching end of life. Western medicine is often beneficial in the care that it provides; however, it becomes culturally unsafe when it fails to take Innu cultural and spiritual knowledge and traditions into account.

Consensual end-of-life for depressed patients: a right or a danger?

Abstract: Recent events have brought the debate on end-of-life issues to the forefront, particularly regarding the principle of self-determination for depressed patients. Belgian legislation, in fact, allows for requesting euthanasia when patients, capable of expressing their own will consciously, suffer in an unbearable manner and find no meaning in continuing their existence, even in the absence of incurable and/or severely debilitating conditions. The state of the art is an increasing number of people who die from euthanasia. An open question is when a situation can be defined as unbearable. Moreover, does such an assessment necessarily lead to death, or are there other solutions? In our opinion, such a practice should be limited to prevent inappropriate applications that could lead to infringing depressed patients' rights.

Compassionate Communication and Advance Care Planning to improve End-of-life Care in Treatment of Haematological Disease 'ACT': Study Protocol for a Cluster-randomized trial.

INTRODUCTION: To support the implementation of advance care planning and serious illness conversations in haematology, a previously developed conversation intervention titled 'Advance Consultations Concerning your Life and Treatment' (ACT) was found feasible. This study aims to investigate the effect of ACT on the quality of end-of-life care in patients with haematological malignancy and their informal caregivers. METHODS AND ANALYSIS: The study is a nationwide 2-arm cluster randomised trial randomising 40 physician-nurse clusters across seven haematological departments in Denmark to provide standard care or ACT intervention. A total of 400 patients with haematological malignancies and their informal caregivers will be included. The ACT intervention includes an ACT conversation that centres on discussing the patient's prognosis, worries, hopes and preferences for future treatment. The intervention is supported by clinician training and supervision, preparatory materials for patients and informal caregivers, and system changes including dedicated ACT-conversation timeslots and templates for documentation in medical records.This study includes two primary outcomes: (1) the proportion of patients receiving chemotherapy within the last 30 days of death and (2) patients' and informal caregivers' symptoms of anxiety (General Anxiety Disorder-7) at 3 6, 9, 12 and 18 months follow-up. Mixed effects models accounting for clusters will be used. ETHICS AND DISSEMINATION: The Declaration of Helsinki and the European GDPR regulations as practised in Denmark are followed through all aspects of the study. Findings will be made available to the participants, patient organisations, funding bodies, healthcare professionals and researchers at national and international conferences and through publication in peer-reviewed international journals. REGISTRATION DETAILS: The study is registered at ClinicalTrials.gov (NCT05444348). The Regional Ethics Committee of the Capital Region of Denmark (record no: 21067634) has decided that approval is not necessary as per Danish legislation. Study approval has been obtained from The Capital Region of Denmark Data Protection Agency (record no: P-2022-93). TRIAL REGISTRATION NUMBER: NCT05444348.

Patterns of care at the end of life: a retrospective study of Italian patients with advanced breast cancer.

OBJECTIVES: To better understand the type of care offered to Italian patients with advanced breast cancer at the End-of-Life (EoL), we conducted a retrospective observational study. EoL was defined as the period of six months before death. METHODS: One hundred and twenty-one patients with advanced breast cancer (ABC) treated at IRCCS San Martino Policlinic Hospital who died between 2017 and 2021 were included. Data about patient, disease, and treatment characteristics from breast cancer diagnosis to death, along with information about comorbidities, medications, imaging, specialist evaluations, hospitalization, palliative care and home care, hospice admissions, and site of death were collected. RESULTS: 98.3% of the patients received at least one line of active treatment at EoL; 52.8% were hospitalized during the selected period. Palliative (13.9%), psychological (7.4%), and nutritional evaluations (8.2%) were underutilized. Palliative home care was provided to 52% of the patients. Most of the patients died at home (66.1%) and fewer than one out of five (18.2%) died at the hospital. Among the patients who died at home, 27.3% had no palliative support. CONCLUSIONS: Our findings indicate that palliative care in EoL breast cancer patients is still inadequate. Only a minority of patients had psychological and nutritional support While low nutritional support may be explained by the fact that typical symptoms of ABC do not involve the gastrointestinal tract, the lack of psychological support suggests that significant barriers still exist. Data on the site of death are encouraging, indicating that EoL management is increasingly home centered in Italy.

The impact of specialized pediatric palliative care on advance care planning and healthcare utilization in children and young adults: a retrospective analysis of medical records of in-hospital deaths.

BACKGROUND: Pediatric palliative care supports children and young adults with life-limiting conditions and their families, seeking to minimize suffering and enhance quality of life. This study evaluates the impact of specialized palliative care (SPC) on advance care planning (ACP) and patterns of end-of-life care for patients who died in the hospital. METHODS: This is a retrospective cohort study of medical records extracted from a clinical data warehouse, covering patients who died aged 0-24 in an academic tertiary children's hospital in South Korea. Participants were categorized into before (2011-2013; pre-period) and after (2017-2019; post-period) the introduction of an SPC service. Within the post-period, patients were further categorized into SPC recipients and non-recipients. RESULTS: We identified 274 and 205 patients in the pre-period and post-period, respectively. ACP was conducted more and earlier in the post-period than in the pre-period, and in patients who received palliative care than in those who did not. Patients who received SPC were likely to receive less mechanical ventilation or cardiopulmonary resuscitation and more opioids. A multivariable regression model showed that earlier ACP was associated with not being an infant, receiving SPC, and having a neurological or neuromuscular disease. CONCLUSIONS: SPC involvement was associated with more and earlier ACP and less intense end-of-life care for children and young adults who died in the hospital. Integrating palliative care into routine care can improve the quality of end-of-life care by reflecting patients' and their families' values and preferences.

Nurses' experience of end-of-life care for patients with COVID-19: A descriptive phenomenology study.

The mortality rates among critically ill patients with COVID-19 have been high. The national and institutional infection control policies and resource shortages caused by the pandemic led patients to undergo deaths without dignity and inevitably changed intensive care unit (ICU) end-of-life care (EOLC) practices. This study explores ICU nurses' experiences of providing EOLC for patients with COVID-19 who died. Eight nurses participated in a qualitative phenomenological study. Semi-structured interviews were conducted from July to September 2022. Colaizzi's data analysis method was used, and the following four main themes emerged: (i) only companion in the death journey; (ii) helping families prepare for death; (iii) EOLC trapped within a framework; and (iv) EOLC in retrospect. To secure high-quality EOLC in ICU, it is important to promote practical support for nurses and EOLC-related discussions/education. Technical support, such as digital communication technologies, should be reinforced to help patients and their families participate in EOLC.

Rest-in-Peace: Research on the Architectural Types and Design Ideas to Guide Design of Hospice Care Building.

In the context of an aging population, the concept of peaceful end-of-life care has gained increasing significance as an essential component of individuals' fundamental well-being. This underscores the importance of researching and developing hospice care facilities and service systems dedicated to providing a tranquil resting environment. This study focuses on selected hospice care buildings, examining their service model evolution and architectural design. Through case analyses, it explores contemporary hospice care architecture, identifying various types and spatial design features that cater to the end-of-life needs of individuals. The findings guide the design of hospice care buildings in China, emphasizing patient-living areas, medical care zones, and auxiliary functional spaces. This comprehensive approach aims to enhance terminally ill patients' comfort, serenity, and dignity. Moreover, it aims to provide emotional and post-funeral support to terminally ill patients' families.

Meeting the Shortage of Human Cells and Tissues: The Andalusian Quality Assurance Programme for Tissue Donation.

Background A quality assurance programme for the tissue donation process was launched in Andalusia in 2020 to facilitate the integration of tissue donation into end-of-life care, and to respond to the growing need for human tissue for therapeutic purposes. The results of this programme are presented here. Methods After identifying the hospital departments in which to intensify the detection of tissue donors, expanding training activities and designing a specific data collection system for possible tissue donors who do not donate their tissues, the results of the donation activity were quantified and the causes of non-donation were analysed by applying the critical pathway for deceased tissue donation methodology. Results After an initial drop in activity, which coincided with the coronavirus pandemic, the number of tissue donors increased by 48.4% in 2022 compared to 2019. From the eligible donors, 83% were actual tissue donors and 71% were utilised donors. The modifiable causes of tissue donation loss, in order of frequency, were family refusal, followed by organisational or logistical issues, failure to notify or failure to identify possible donors, and failure to complete donor evaluation. Conclusion As a result of the collaboration of the various professionals involved in the programme, tissue donation activity has increased remarkably, the potential and effectiveness of the donation process have been evaluated, and areas for improvement have been identified, which we hope will lead to continuous improvement of the process.

Influencing factors of home hospice care needs of family caregivers of the older adult with chronic diseases at the end of life in China: a cross-sectional study.

Introduction: With increased life expectancy in the Chinese population coupled with chronic disease the care needs of people at the end of life are attracting much attention. Home hospice care can help the dying older adult achieve comfort and maintain their dignity at home. However, dying at home means great responsibility and challenge for family caregivers, and there are many unmet needs. The study aimed to investigate the home hospice care needs of family caregivers of older adult people with chronic diseases at the end of life in China, and to analyze the influencing factors of home hospice care needs of caregivers. Methods: In this cross-sectional study, from May to September 2023, 4 community health service centers were selected by stratified sampling from seven administrative districts in Jinzhou City, Liaoning Province, where home hospice care was piloted. Then 224 family caregivers were selected from the communities of seven community service centers by simple random sampling method. A general information questionnaire and the home hospice care needs questionnaire developed by our research group were used to investigate. Univariate analysis was used to compare the differences in the scores of different characteristics, and the factors with significant differences were selected for multivariate linear regression analysis to determine the final influencing factors. Results: The total score of hospice care needs of family caregivers was 121.61 ± 15.24, among which the end-of-life knowledge need dimension score was 24.04 ± 2.71, the highest score index was 80.13%, while the symptom control need score was 15.58 ± 3.39, the lowest score index was 62.32%. In addition, Caregivers with caregiving experience, dying older adult with longer disease duration, and dying older adult with higher levels of education were the factors influencing the total need for home hospice care among family caregivers, with a variance explained of 22.7%. Discussion: The needs of family caregivers of the terminally ill older adult are high, and healthcare professionals should implement services to meet their multidimensional needs and improve the quality of care according to the factors affecting their needs.

Administering injectable medications prescribed in the anticipation of the end of life in the community: A mixed-methods observational study.

BACKGROUND: The prescription of injectable anticipatory medications ahead of possible need for last-days-of-life symptom relief is established community practice internationally. Healthcare teams and policy makers view anticipatory medication as having a key role in optimising effective and timely symptom control. However, how these medications are subsequently administered (used) is unclear and warrants detailed investigation to inform interdisciplinary practice and guidance. OBJECTIVE: To identify the frequency, timing and recorded circumstances of the administration of injectable end-of-life anticipatory medications prescribed for patients living at home and in residential care. DESIGN: A retrospective mixed-methods observational study using general practitioner (family doctor) and community nursing held clinical records. SETTING(S): Community-based care in two English counties. PARTICIPANTS: 167 deceased adult patients (aged 18+) registered with eleven general practitioner practices and two associated community nursing services. These were patients prescribed anticipatory medications, identified from the 30 most recent deaths per practice. Patients died between 1 March 2017 and 25 September 2019, from any cause except trauma, sudden death or suicide. METHODS: Patient characteristics, anticipatory medication discussions, recorded administration contexts and decision-making, medication details, recorded symptom control and comfort at death were collected from clinical records. Data analysis combined quantitative and qualitative analyses in a mixed methods approach. RESULTS: Anticipatory medications were administered to 59.9 % (100/167) patients, commenced between 0 and 586 days before death (median 3 days). Their usage was similar for patients who died from cancer and non-cancer conditions. Anticipatory medications were almost universally started and titrated by visiting nurses. Eleven patients had medications started between 59 days and 586 days before death for recorded reversible non-end-of-life care conditions. Only 5 % (5/100) of patient records contained detailed accounts of patient participation in decisions to start medications: four were recorded as being reluctant to commence medications but agreed to trial injections to relieve symptoms. Crucially, there was recurrent under-recording of the effectiveness of injectable medications and patient comfort. CONCLUSIONS: Prescribed medications were commonly administered by visiting community nurses to help manage last-days-of-life symptoms. However, patient records infrequently referred to the effectiveness of administered medication and perceived patient comfort. Most recorded references to patient and family preferences for involvement in anticipatory medication decision-making and their experiences of care were brief and perfunctory. More detailed information should be routinely recorded in clinical records to enable assessment of the appropriate and effective use of anticipatory medicines and how inter-professional collaboration and services could be developed to provide adequate twenty-four-hour cover. TWEETABLE ABSTRACT: Effectiveness of injectable end-of-life symptom control medications and patient comfort often under-recorded @Ben_Bowers__ @PELi_Cam @TheQNI.

Interdisciplinary research approach based on a mixed-methods design to explore patient altruism at the end of life: a study protocol.

INTRODUCTION: In the end of life context, patients are often seen as somewhat passive recipients of care provided by health professionals and relatives, with little opportunity to be perceived as autonomous and active agents. Since studies show a very high prevalence of altruistic dispositions in palliative care patients, we strive to investigate the concept of patient altruism in a set of six interdisciplinary studies by considering three settings: (1) in the general palliative context-by studying to what extent patient altruism is associated with essential psychological outcomes of palliative care (subproject 1a), how altruism is understood by patients (subproject 1b) and how altruism expressed by patients is experienced by palliative care nurses (subproject 1c); (2) in two concrete decision-making contexts-advance care planning (subproject 2a) and assisted suicide (subproject 2b); and (3) through verbal and non-verbal patient communication in palliative care settings (subproject 3). METHODS AND ANALYSIS: Subproject 1a: a cross-sectional study using validated and standardised questionnaires. Subprojects 1b and 1c: a constructivist grounded theory method aiming at developing a novel theory from semistructured interviews in both patients and nurses. Subproject 2a: a thematic analysis based on (1) audio-recordings of advance care planning encounters and (2) follow-up semidirective interviews with patients and their relatives. Subproject 2b: a qualitative study based on thematic analysis of interviews with patients actively pursuing assisted suicide and one of their relatives.Subproject 3: a conversation analysis based on audio and video-recorded interactions in two settings: (1) palliative inpatient unit and (2) advance care planning discussions. ETHICS AND DISSEMINATION: The study project was approved by the Ethics Committees of the Canton of Vaud, Bern and Ticino (no: 2023-00088). In addition to participation in national and international conferences, each project will be the subject of two scientific publications in peer-reviewed journals. Additional publications will be realised according to result triangulation between projects. A symposium opened to professionals, patients and the public will be organised in Switzerland at the end of the project.

Use of the supportive and palliative care indicators tool (SPICT™) for end-of-life discussions: a scoping review.

BACKGROUND: In order to mitigate the distress associated with life limiting conditions it is essential for all health professionals not just palliative care specialists to identify people with deteriorating health and unmet palliative care needs and to plan care. The SPICT™ tool was designed to assist with this. AIM: The aim was to examine the impact of the SPICT™ on advance care planning conversations and the extent of its use in advance care planning for adults with chronic life-limiting illness. METHODS: In this scoping review records published between 2010 and 2024 reporting the use of the SPICT™, were included unless the study aim was to evaluate the tool for prognostication purposes. Databases searched were EBSCO Medline, PubMed, EBSCO CINAHL, APA Psych Info, ProQuest One Theses and Dissertations Global. RESULTS: From the search results 26 records were reviewed, including two systematic review, two theses and 22 primary research studies. Much of the research was derived from primary care settings. There was evidence that the SPICT™ assists conversations about advance care planning specifically discussion and documentation of advance care directives, resuscitation plans and preferred place of death. The SPICT™ is available in at least eight languages (many versions have been validated) and used in many countries. CONCLUSIONS: Use of the SPICT™ appears to assist advance care planning. It has yet to be widely used in acute care settings and has had limited use in countries beyond Europe. There is a need for further research to validate the tool in different languages.

Managing greenhouse gas emissions in the terminal year of life in an overwhelmed health system: a paradigm shift for people and our planet.

Health care contributes 4·4% of global net carbon emissions. Hospitals are resource-intensive settings, using a large amount of supplies in patient care and have high energy, ventilation, and heating needs. This Viewpoint investigates emissions related to health care in a patient's last year of life. End of life (EOL) is a period when health-care use and associated emissions production increases exponentially due primarily to hospital admissions, which are often at odds with patients' values and preferences. Potential solutions detailed within this Viewpoint are facilitating advanced care plans with patients to ensure their EOL wishes are clear, beginning palliative care interventions earlier when treating a life-limiting illness, deprescribing unnecessary medications because medications and their supply chains make up a significant portion of health-care emissions, and, enhancing access to low-intensity community care settings (eg, hospices) within the last year of life if home care is not available. Our analysis was done using Canadian data, but the findings can be applied to other high-income countries.