Promoting End-of-Life Care and Healthcare Worker Well-Being: Implementing the 3 Wishes Project in an Oncology Intensive Care Unit.

This scholarly project implemented the 3 Wishes Project (3WP), which aims to fulfill the final wishes of dying critically ill patients, in a 16-bed tertiary intensive care unit (ICU). The project assessed outcomes through sur.

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.

[Withdrawal of life sustaining treatment in the ICU - different doctors act differently]. / Hur livsuppehållande behandling avbryts på Iva ­ läkare gör olika.

Decisions to withdraw life sustaining treatment in the ICU are common, but there is little information about how treatment should be withdrawn. A pilot study showed that doctors withdraw life sustaining treatment in different ways even in identical cases. This variation can cause stress for ICU staff and relatives.  Our study investigated the decisions of doctors working in ICUs in Sweden regarding the withdrawal of life sustaining treatment for two fictitious patients. There was variation in if and how drug treatments should be withdrawn, as well as how ventilatory support should be withdrawn. Less experienced doctors tended to choose to prolong the dying process by weaning, even if it is unclear if that is preferable for the staff or for relatives.  Our study could be used in discussions in ICUs to try to understand how individual doctors make decisions about withdrawing life sustaining treatment.

[The oncologist, death and the pharmakon]. / L'oncologue, la mort et le pharmakon.

THE ONCOLOGIST, DEATH AND THE PHARMAKON. Stopping chemotherapy for patients treated in oncology is a difficult moment, feared by oncologists because it is often associated with abandonment or even failure in front of a resistant or aggressive disease. End-of-life chemotherapy is still common in oncology departments. However, it will be harmful if it causes side effects which alter the quality of life of patients or even hasten their death. But above all, this chemotherapy delays the implementation of appropriate palliative care support. Questioning the risk of hubris (excess) in some treatment, asking the relationship between the patient and his death, and prioritizing the quality of last moments is essential to best support patients on the path to the end o f life.

L'ONCOLOGUE, LA MORT ET LE PHARMAKON. L'arrêt des chimiothérapies des malades traités en oncologie est un moment difficile, redouté par les oncologues car souvent associé à un abandon, voire à un échec, face à une maladie résistante devenue trop agressive. La chimio thérapie de la fin de vie est encore fréquente dans les services d'oncologie. Elle est pourtant délétère si elle entraîne des effets indésirables qui altèrent la qualité de vie des malades, voire précipitent leur décès. Mais, surtout, cette chimiothérapie "de trop" retarde la mise en place d'un accompagnement adapté en soins palliatifs. Interroger le risque d'hubris de certains traitements, questionner le rapport à la mort du malade et privilégier la qualité du temps qui reste est pourtant essentiel pour accompagner au mieux les malades sur le chemin de la fin de vie.

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.

Supported Privacy: An Essential Principle for End-of-Life Care for Children and Families in the PICU.

Caring for children and their families at the end-of-life is an essential but challenging aspect of care in the PICU. During and following a child's death, families often report a simultaneous need for protected privacy and ongoing supportive presence from staff. Balancing these seemingly paradoxical needs can be difficult for PICU staff and can often lead to the family feeling intruded upon or abandoned during their end-of-life experience. In this "Pediatric Critical Care Medicine Perspectives" piece, we reframe provision of privacy at the end-of-life in the PICU and describe an essential principle that aims to help the interprofessional PICU team simultaneously meet these two opposing family needs: "Supported Privacy." In addition, we offer concrete recommendations to actualize "Supported Privacy" in the PICU, focusing on environmental considerations, practical needs, and emotional responses. By incorporating the principles of "Supported Privacy" into end-of-life care practices, clinicians can support the delivery of high-quality care that meets the needs of children and families navigating the challenges and supports of end-of-life in the PICU.

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.

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.

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.

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.

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.

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.

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.

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.