Chinese older adults' prior-to-death disability profiles and their correlates.

BACKGROUND: Disability prior to death complicates end-of-life care. The present study aimed to explore the prior-to-death disability profiles of Chinese older adults, the profiles' links to end-of-life care arrangements and place of death, and predictors of the profiles. METHODS: In total, data were extracted from the records of 10,529 deceased individuals from the Chinese Longitudinal Healthy Longevity Survey (CLHLS). Latent profile analyses, bivariate analysis, and multivariate logistic regression were applied to identify prior-to-death disability profiles, explore the profiles' links to end-of-life care arrangements and place of death, and examine predictors in the profiles, respectively. RESULTS: Three prior-to-death disability profiles, namely, Disabled-Incontinent (37.6%), Disabled-Continent (34.6%), and Independent (27.8%), were identified. Those with the Independent profile were more likely to live alone or with a spouse and receive no care or care only from the spouse before death. Disabled-Continent older adults had a higher chance of dying at home. Being female, not "married and living with a spouse", suffering from hypertension, diabetes, stroke or cerebrovascular disease (CVD), bronchitis/emphysema/pneumonia, cancer, or dementia, and dying in a later year were associated with more severe prior-to-death disability patterns. Not having public old-age insurance predicted lower chances of having a Disabled-Incontinent profile, and advanced age increased the chance of having a Disabled-Continent profile. CONCLUSIONS: Three prior-to-death disability patterns were identified for Chinese adults aged 65 years and older. These profiles were significantly linked with the end-of-life caregiving arrangements and place of death among older adults. Both demographic information and health status predicted prior-to-death disability profiles.

Healthcare use and costs in the last six months of life by level of care and cause of death.

BACKGROUND: Existing knowledge on healthcare use and costs in the last months of life is often limited to one patient group (i.e., cancer patients) and one level of healthcare (i.e., secondary care). Consequently, decision-makers lack knowledge in order to make informed decisions about the allocation of healthcare resources for all patients. Our aim is to elaborate the understanding of resource use and costs in the last six months of life by describing healthcare use and costs for all causes of death and by all levels of formal care. METHOD: Using five national registers, we gained access to patient-level data for all individuals who died in Norway between 2009 and 2013. We described healthcare use and costs for all levels of formal care-namely primary, secondary, and home- and community-based care -in the last six months of life, both in total and differentiated across three time periods (6-4 months, 3-2 months, and 1-month before death). Our analysis covers all causes of death categorized in ten ICD-10 categories. RESULTS: During their last six months of life, individuals used an average of healthcare resources equivalent to €46,000, ranging from €32,000 (Injuries) to €64,000 (Diseases of the nervous system and sense organs). In terms of care level, 63% of healthcare resources were used in home- and community-based care (i.e., in-home nursing, practical assistance, or nursing home care), 35% in secondary care (mostly hospital care), and 2% in primary care (i.e., general practitioners). The amount and level of care varied by cause of death and by time to death. The proportion of home- and community-based care which individuals received during their last six months of life varied from 38% for cancer patients to 92% for individuals dying with mental diseases. The shorter the time to death, the more resources were needed: nearly 40% of all end-of-life healthcare costs were expended in the last month of life across all causes of death. The composition of care also differed depending on age. Individuals aged 80 years and older used more home- and community-based care (77%) than individuals dying at younger ages (40%) and less secondary care (old: 21% versus young: 57%). CONCLUSIONS: Our analysis provides valuable evidence on how much healthcare individuals receive in their last six months of life and the associated costs, broken down by level of care and cause of death. Healthcare use and costs varied considerably by cause of death, but were generally higher the closer a person was to death. Our findings enable decision-makers to make more informed resource-allocation decisions and healthcare planners to better anticipate future healthcare needs.

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.

Integrating Palliative Care and Hematologic Malignancies: Bridging the Gaps for Our Patients and Their Caregivers.

Patients with hematologic malignancies (HMs) struggle with immense physical and psychological symptom burden, which negatively affect their quality of life (QOL) throughout the continuum of illness. These patients are often faced with substantial prognostic uncertainty as they navigate their illness course, which further complicates their medical decision making, especially at the end of life (EOL). Consequently, patients with HM often endure intensive medical care at the EOL, including frequent hospitalization and intensive care unit admissions, and they often die in the hospital. Our EOL health care delivery models are not well suited to meet the unique needs of patients with HMs. Although studies have established the role of specialty palliative care for improving QOL and EOL outcomes in patients with solid tumors, numerous disease-, clinician-, and system-based barriers prevail, limiting the integration of palliative care for patients with HMs. Nonetheless, multiple studies have emerged over the past decade identifying the role of palliative care integration in patients with various HMs, resulting in improvements in patient-reported QOL, symptom burden, and psychological distress, as well as EOL care. Importantly, these studies have also identified active components of specialty palliative care interventions, including strategies to promote adaptive coping especially in the face of prognostic uncertainty. Future work can leverage the knowledge gained from specialty palliative care integration to develop and test primary palliative care interventions by training clinicians caring for patients with HMs to incorporate these strategies into their clinical practice.

Urban people's preferences for life-sustaining treatment or artificial nutrition and hydration in advance decisions.

BACKGROUND: The Patient Right to Autonomy Act (PRAA), implemented in Taiwan in 2019, enables the creation of advance decisions (AD) through advance care planning (ACP). This legal framework allows for the withholding and withdrawal of life-sustaining treatment (LST) or artificial nutrition and hydration (ANH) in situations like irreversible coma, vegetative state, severe dementia, or unbearable pain. This study aims to investigate preferences for LST or ANH across various clinical conditions, variations in participant preferences, and factors influencing these preferences among urban residents. METHODS: Employing a survey of legally structured AD documents and convenience sampling for data collection, individuals were enlisted from Taipei City Hospital, serving as the primary trial and demonstration facility for ACP in Taiwan since the commencement of the PRAA in its inaugural year. The study examined ADs and ACP consultation records, documenting gender, age, welfare entitlement, disease conditions, family caregiving experience, location of ACP consultation, participation of second-degree relatives, and the intention to participate in ACP. RESULTS: Data from 2337 participants were extracted from electronic records. There was high consistency in the willingness to refuse LST and ANH, with significant differences noted between terminal diseases and extremely severe dementia. Additionally, ANH was widely accepted as a time-limited treatment, and there was a prevalent trend of authorizing a health care agent (HCA) to make decisions on behalf of participants. Gender differences were observed, with females more inclined to decline LST and ANH, while males tended towards accepting full or time-limited treatment. Age also played a role, with younger participants more open to treatment and authorizing HCA, and older participants more prone to refusal. CONCLUSION: Diverse preferences in LST and ANH were shaped by the public's current understanding of different clinical states, gender, age, and cultural factors. Our study reveals nuanced end-of-life preferences, evolving ADs, and socio-demographic influences. Further research could explore evolving preferences over time and healthcare professionals' perspectives on LST and ANH decisions for neurological patients..

The double burden of severe mental illness and cancer: a population-based study on colorectal cancer care pathways from screening to end-of-life care.

AIMS: Cancer is one of the main causes of death in persons with severe mental illness (SMI). Although their cancer incidence is similar, or sometimes even potentially lower compared to the general population, their cancer mortality remains higher. The role of healthcare provision and care equity in this mortality is increasingly being addressed in research, but available studies are limited in their scope. In this context, our aim was to compare colorectal cancer (CRC) care pathways from screening to end-of-life care in patients with and without pre-existing SMI on a national scale. METHODS: This research leverages real-world data from the French national health claims database, covering the entire population, to assess cancer screening, diagnosis, treatment and post-treatment follow-up as well as quality of care (QOC) pathways among patients with incident CRC in 2015-2018, considering whether they had pre-existing SMI. We matched patients with SMI with three patients without - on age, sex, region of residence, year of cancer incidence and cancer type and location at presentation - as well as nationally established quality of CRC care indicators and regression models adjusting for relevant socio-economic, clinical and care provider-related covariates. RESULTS: Among patients with incident CRC, 1,532 individuals with pre-existing SMI were matched with individuals without SMI. After adjusting for covariates, both colon and rectal cancer patients with SMI were less likely to participate in the national CRC screening programme and to receive advanced diagnostic examinations (e.g., colonoscopies and several complementary diagnostic examinations). They also had lower odds of receiving combined treatments (e.g., neoadjuvant chemotherapy, radiotherapy and excision) and of having access to targeted therapy or capecitabine but higher odds for invasive care (e.g., stoma). Colon cancer patients with SMI were also more likely to have no treatment at all, and rectal cancer patients with SMI were less likely to receive post-treatment follow-up. Suboptimal QOC was observed for both groups of patients, but to a higher extent for patients with SMI, with statistically significant differences for indicators focusing on diagnosis and post-treatment follow-up. CONCLUSIONS: Our findings reveal discrepancies across the care continuum of CRC between individuals with and without SMI and provide initial avenues on where to focus future efforts to address them, notably at the entry and exit stages of cancer care pathways, while calling for further research on the mechanisms preventing equity of physical healthcare for individuals with SMI.

SupporTive Care At Home Research (STAHR) for patients with advanced cancer: Protocol for a cluster non-randomized controlled trial.

Advancements in the treatment and management of patients with cancer have extended their survival period. To honor such patients' desire to live in their own homes, home-based supportive care programs have become an important medical practice. This study aims to investigate the effects of a multidimensional and integrated home-based supportive care program on patients with advanced cancer. SupporTive Care At Home Research is a cluster non-randomized controlled trial for patients with advanced cancer. This study tests the effects of the home-based supportive care program we developed versus standard oncology care. The home-based supportive care program is based on a specialized home-based medical team approach that includes (1) initial assessment and education for patients and their family caregivers, (2) home visits by nurses, (3) biweekly regular check-ups/evaluation and management, (4) telephone communication via a daytime access line, and (5) monthly multidisciplinary team meetings. The primary outcome measure is unplanned hospitalization within 6 months following enrollment. Healthcare service use; quality of life; pain and symptom control; emotional status; satisfaction with services; end-of-life care; advance planning; family caregivers' quality of life, care burden, and preparedness for caregiving; and medical expenses will be surveyed. We plan to recruit a total of 396 patients with advanced cancer from six institutions. Patients recruited from three institutions will constitute the intervention group, whereas those recruited from the other three institutions will comprise the control group.

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.

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.

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.

Maintaining Parental Roles During Neonatal End-of-Life Care: A Review of the Literature.

Parents who are experiencing neonatal death need support in promoting and maintaining their parental role. This includes parenting their infant during end-of-life. Bedside nurses should partner with parents to help them maintain the parent-infant relationship by establishing effective communication, building trust, and promoting the parental role. By doing so, parents will utilize these experiences to process their grief through meaning-making.

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.

End of life decision making when home mechanical ventilation is used to sustain breathing in Motor Neurone Disease: patient and family perspectives.

BACKGROUND: Motor Neurone Disease (MND) leads to muscle weakening, affecting movement, speech, and breathing. Home mechanical ventilation, particularly non-invasive ventilation (NIV), is used to alleviate symptoms and support breathing in people living with MND. While home mechanical ventilation can alleviate symptoms and improve survival, it does not slow the progression of MND. This study addresses gaps in understanding end-of-life decision-making in those dependent on home mechanical ventilation, considering the perspectives of patients, family members, and bereaved families. METHODS: A UK-wide qualitative study using flexible interviews to explore the experiences of people living with MND (n = 16), their family members (n = 10), and bereaved family members (n = 36) about the use of home mechanical ventilation at the end of life. RESULTS: Some participants expressed a reluctance to discuss end-of-life decisions, often framed as a desire to "live for the day" due to the considerable uncertainty faced by those with MND. Participants who avoided end-of-life discussions often engaged in 'selective decision-making' related to personal planning, involving practical and emotional preparations. Many faced challenges in hypothesising about future decisions given the unpredictability of the disease, opting to make 'timely decisions' as and when needed. For those who became dependent on ventilation and did not want to discuss end of life, decisions were often 'defaulted' to others, especially once capacity was lost. 'Proactive decisions', including advance care planning and withdrawal of treatment, were found to empower some patients, providing a sense of control over the timing of their death. A significant proportion lacked a clear understanding of the dying process and available options. CONCLUSIONS: The study highlights the complexity and evolution of decision-making, often influenced by the dynamic and uncertain nature of MND. The study emphasises the need for a nuanced understanding of decision-making in the context of MND.

Insights into the experiences of nurse educators in end-of-life care: A qualitative study.

AIM: This study elucidated the experience of nurse educators instructing practicums for nursing students assigned to the care of end-of-life patients in fundamental nursing education. BACKGROUND: With the growing population of older adults and increased mortality, nurses providing care for people at the end-of-life stage and their families (referred to as end-of-life nursing) will be increasingly important in Japanese healthcare settings. Acquiring knowledge and action-level methods can be insufficient for nursing students to approach the illness experiences of people at the end of their life and their families, increasing the importance of practicum in end-of-life nursing to enable learning from experience. This situation raised the need to study how nurse educators for nursing care for end-of-life patients experience the situation and what they practice as observed through the educator's standpoint to devise better teaching methods for end-of-life nursing practica. DESIGN: Interpretative phenomenology was used. METHODS: Semi-structured interviews were conducted with six nurse educators. Participants were interviewed about their experiences in teaching nursing students who care for people in the final stages of life. Data were analyzed using Benner's Interpretive phenomenological approach. RESULTS: Nurse educators teaching students assigned to end-of-life patients experienced the [sudden appearance of patients themselves] and were involved in the nursing care for these end-of-life patients. They [seized the opportune "moments" for teaching] while [placing the value of practicum in end-of-life nursing in the "fragments" that students find] and then acknowledged that students were becoming aware of the core values of end-of-life nursing, even though they could not perform the techniques of care. Nurse educators also [recognized students as learners at the "borderline stage"] who are still distinct from nurses and valued students in their current state of development with hopes and expectations for further growth. CONCLUSIONS: This study highlighted the importance of nurse educators leveraging their practical knowledge to provide direct guidance to nursing students in clinical settings. The educators approached patient care with intentionality, prioritizing the well-being of patients while engaging in co-existent care alongside the students. Simultaneously, they respected the nursing students in their transition to becoming nurses, harboring hopes and expectations for continued growth. Concurrently, they were curious about the patient and student. They sought to balance the interests of the two parties representing dissimilar temporality, thereby applying their intuitive embodied intelligence into practice. Such experiences were also interpreted from the temporality of nursing students in a transitional stage of becoming nurses.

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.