End-of-life Care Research Articles

Perspectives in preparedness of family caregivers of patients with cancer providing end-of-life care in the home: A narrative review of qualitative studies.

Many patients with advanced cancer identify home as being their preferred place of death. A critical component in achieving a home death is the support of family members, who often take on responsibilities for which they feel insufficiently prepared with subsequent impacts upon their health and well-being. This study sought to review existing qualitative literature on family carers' experiences in providing end-of-life care at home for patients with advanced cancer, with an emphasis on exploring factors that influence how prepared they feel for their role. A narrative review was chosen to provide an overview and analysis of qualitative findings. MEDLINE, PubMed, PsychINFO, and EMBASE databases were searched with the following search terms: "Cancer," "Caregiver," "End of Life Care," "Home," and "Qualitative." Inclusion criteria were as follows: English language, empirical studies, adult carers, and articles published between 2011 and 2021. Data were abstracted, and study quality was assessed using the Critical Appraisal Skills Programme checklist for qualitative research. Fourteen relevant articles were included. Three overarching themes reflecting the factors influencing family preparedness for their role were identified: "motivations for providing care," "interactions with health-care professionals," and "changes during the caring process." Inadequate preparation of family carers is apparent with regard to their role in providing end-of-life care at home for patients with advanced cancer. There is a need for health-care workers to more effectively identify the information and support needs of families, and utilize evidence-based strategies that have emerged to address these needs.

End-of-life Decision-making Differs Between a Cancer and a Dementia Patient: Influences of the Physician's Background Factors.

Appropriate decision-making is essential for end-of-life (EOL) care without futile therapies. However, these decisions might vary in cases of cancer and other advanced diseases according to physicians' experience, education, and values. This study aimed to compare the decisions in EOL care of advanced cancer and dementia and the factors that influence them in medical students, general practitioners (GPs), and physicians with special competence in palliative medicine (cPM). A questionnaire presenting patient scenarios concerning different decisions and ethical aspects of EOL care with additional questions on attitudes and background factors was delivered to 500 Finnish GPs, all Finnish physicians with cPM (n=82), and all graduating medical students (n=639) in 2015-2016. Altogether 601 responses were obtained (53%). Palliative care was chosen more often for a patient with advanced prostate cancer (83%) than for a patient with advanced dementia (41%) (both patients males, same age). A suspicion of iatrogenic bleeding in the prostate cancer patient decreased the willingness to choose palliative care, especially among the students. Patient benefit was regarded as an important background factor in decision making by all respondent groups, but physicians' legal protection was not considered as important among the physicians with cPM as it was among the other respondent groups. Finnish doctors and students were more likely to choose palliative care options for an advanced prostate cancer patient than for an advanced dementia patient. Decision-making was influenced by respondents' background factors and attitudes. Education on EOL care for different types of advanced and incurable diseases is highly needed.

A qualitative exploration of allied health providers’ perspectives on cultural humility in palliative and end-of-life care

BackgroundCultural factors, including religious or cultural beliefs, shape patients’ death and dying experiences, including palliative and end-of-life (EOL) care preferences. Allied health providers must understand their patients’ cultural preferences to support them in palliative and EOL care effectively. Cultural humility is a practice which requires allied health providers to evaluate their own values, biases, and assumptions and be open to learning from others, which may enhance cross-cultural interactions by allowing providers to understand patients’ perceptions of and preferences for their health, illness, and dying. However, there is limited knowledge of how allied health providers apply cultural humility in palliative and EOL care within a Canadian context. Thus, this study describes Canadian allied health providers’ perspectives of cultural humility practice in palliative and EOL care settings, including how they understand the concept and practice of cultural humility, and navigate relationships with patients who are palliative or at EOL and from diverse cultural backgrounds.MethodsIn this qualitative interpretive description study, remote interviews were conducted with allied health providers who currently or recently practiced in a Canadian palliative or EOL care setting. Interviews were audio-recorded, transcribed, and analyzed using interpretive descriptive analysis techniques.ResultsEleven allied health providers from the following disciplines participated: speech-language pathology, occupational therapy, physiotherapy, and dietetics. Three themes were identified: (1) Interpreting and understanding of cultural humility in palliative and EOL care (i.e., recognizing positionality, biases and preconceived notions and learning from patients); (2) Values, conflicts, and ethical uncertainties when practicing cultural humility at EOL between provider and patient and family, and within the team and constraints/biases within the system preventing culturally humble practices; (3) The ‘how to’ of cultural humility in palliative and EOL care (i.e., ethical decision-making in palliative and EOL care, complexities within the care team, and conflicts and challenges due to contextual/system-level factors).ConclusionsAllied health providers used various strategies to manage relationships with patients and practice cultural humility, including intra- and inter-personal strategies, and contextual/health systems enablers. Conflicts and challenges they encountered related to cultural humility practices may be addressed through relational or health system strategies, including professional development and decision-making support.

A palliative care communication simulation for undergraduate nursing and midwifery students: A pilot study.

Undergraduate nursing education prepares student for entry into the profession. Palliative care is an essential component of nursing education; however, a focus on the management of symptom burden fails to prepare the undergraduate in communication skills required for palliative or end-of-life care (EoLC). Simulation to teach acute care is well researched; however, limited studies explore simulation for palliative care or EoLC. Fewer studies combine communication with palliative care simulation. The overarching aim is to explore the influence of a palliative care communication simulation on undergraduate nursing students. Participants were students recruited from two campuses at a major Australian university in 2021. Students attended a compulsory simulation for all nursing or nursing and midwifery students. Pre- and post-simulation questionnaires collected qualitative and quantitative responses from participants. This paper reports that the quantitative data captured included demographic information, and the Frommelt Attitude Toward Care of the Dying (FATCOD-B) tool, to assess the attitudes. The qualitative component of the research will be reported as a separate paper. A statistically significant increase in FATCOD-B scores was observed between pre- and post-simulation questionnaires, as well as a statistically significant difference related to the gender of participants. Age and previous experience with death also impacted FATCOD-B results. The increase in FATCOD-B scores demonstrate that the positive impact of simulation suggests the importance of educational interventions such as the one conducted in this study. Education to improve the attitude toward caring for the dying and communication skills for difficult conversations are relevant and valuable. Further research is indicated.

Palliative care and end of life care in decompensated cirrhosis.

Palliative care and end of life care in decompensated cirrhosis.

Frequency and Magnitude of Obstacles and Helpful Behavior Items in End-of-Life Care as Perceived by Nurses Working in Critical-Access Hospitals.

Twenty percent of Americans live in rural areas where most of their health care is provided in critical-access hospitals (CAHs). It is unknown how frequently obstacle and helpful behavior items occur in end-of-life (EOL) care in CAHs. The aims of this study were to determine the frequency of occurrence scores of obstacle and helpful behavior items in providing EOL care in CAHs and to also determine which obstacles and helpful behaviors have the greatest or least impact on EOL care based on the magnitude scores. A questionnaire was sent to nurses working in 39 CAHs in the United States. Nurse participants were asked to rate obstacle and helpful behavior items by size and frequency of occurrence. Data were analyzed to quantify the impact of obstacle and helpful behavior items on EOL care in CAHs by multiplying the mean size by the mean frequency of items to determine mean magnitude scores. Items with the highest and lowest frequency were determined. In addition, obstacle and helpful behavior item magnitude scores were calculated. Seven of the top 10 obstacles were related to patients' families. Seven of the top 10 helpful behaviors involved nurses ensuring families had positive experiences. Nurses in CAHs perceived issues around patient family members as significant obstacles to EOL care. Nurses work to ensure that families have positive experiences. Visiting hour issues seemed to be irrelevant. The use of technology, such as telehealth, seemed to provide little benefit in EOL care in CAHs.

One death doesn't fit all: how should we approach end-of-life care in very frail adults?

Death is inevitable. When, however, is bound by uncertainty in frailty. A purely proactive approach to dying - exemplified by the DNACPR (do not attempt cardiopulmonary resuscitation) form - is unrealistic. What does a good death look like - and who decides? To understand the experiences of primary care clinicians and bereaved relatives in end-of-life (EOL) care and inform future service provision for frail and dying people. We conducted 21 semi-structured interviews with 12 GPs and 9 relatives of recently deceased patients and completed an inductive thematic analysis. We identified four themes: 1) relationships and duty of care: many participants identified the responsibility - medical and familial - associated with EOL care. Discussions and decision-making around death, while crucial, create a significant emotional burden; 2) power and authority: the decision-making process involves multilayered power dynamics between families, patients, and clinicians in attempts to manage uncertainty. Medical judgements' authority can be simultaneously welcomed and challenged. Advanced care planning can become symbolic of hidden tensions around acceptance of death; 3) conflicting ideologies: conflicting binary ideas around a 'good death' recurred, with no universal preferences. Understanding where families, the dying, and the doctor sit on these spectra is crucial and rarely communicated; 4) resource limitations (for example, lack of social care support) constrain the decision-making process. You only get one chance to die well. Thoughtful and empathetic decision-making in a reactive and complex environment is crucial to supporting patients, loved ones, and clinicians. A one-size-fits-all proactive 'death conveyor belt' is unrealistic.

Silent Conversations: Goals of Care and End-of-Life Quality in Relapsed High-Risk Leukemia.

Advanced practice providers (APPs) affect high-quality health care through leadership, evidence-based practice implementation, and quality improvement projects. When planning solutions to clinical problems, leadership must solicit APP input to promote success. Hematology patients are more likely to receive poor-quality end-of-life (EOL) care than those with solid tumors. Regardless of disease, aggressive EOL care is increasing despite evidence that it is often inconsistent with patients' goals of care (GOC). Data regarding this phenomenon in hematology specifically is lacking. The distorted association of "end of life" with "goals of care" has "silenced" crucial goals discussions in patients with relapsed or refractory high-risk leukemia, which raises concerns for the provision of care that is inconsistent with patients' values and preferences. Hematologists may possess certain traits and distinct barriers leading to what one might call an aversion to GOC discussions in the inpatient setting. (1) Quantify hematologists' rate of participation in a GOC pathway initiative during two separate months. (2) Explore the hematologists' definition of and barriers to having GOC discussions. This is a mixed-methods, explanatory sequential design (follow-up explanations variant). Quantitative: Hematology inpatient admissions during two nonconsecutive months in 2021. Qualitative: Eighteen leukemia hematologists from one dedicated cancer center. During the 2 months, an average of 36% of admissions met the criteria for GOC pathway initiation, 19% of those had an appropriate initiation order, and < 1% had a properly documented and billed GOC discussion. Nine hematologists responded to a SurveyMonkey poll with two questions. All nine included clinical situation and communication in their definition of GOC discussions. Time limitations and prognostic uncertainty were the two most reported barriers. The findings demonstrate that the apprehension of hematologists to have GOC conversations is similarly seen in the APPs' reluctance to initiate a pathway intended to lead to GOC conversations. The percentage of eligible inpatient admissions meeting the specified criteria was similar between the 2 months; however, the number of appropriate referrals and documented or billed GOC discussions was higher in the earlier month, demonstrating temporal decline. Further research inquiry is needed to explore causation of this phenomenon.

Comparison of functional disabilities, place of death and end-of-life medical expenditures among centenarians and non-centenarians in China: a series of cross-sectional studies

BackgroundLong-term and end-of-life (EOL) care for older adults has become a global concern due to extended longevity, which is generally accompanied by increased rates of disability. However, differences in the rates of disability in activities of daily living (ADLs), place of death and medical expenditures during the last year of life between centenarians and non-centenarians in China remain unknown. This study aims to fill this research gap to inform policy efforts for the capacity-building of long-term and EOL care for the oldest-old, especially for centenarians in China.MethodsData from 20,228 decedents were derived from the 1998–2018 Chinese Longitudinal Healthy Longevity Survey. Weighted logistic and Tobit regression models were used to estimate differences in the prevalence of functional disability, rate of death in hospitals and EOL medical expenditures by age groups among oldest-old individuals.ResultsOf the 20,228 samples, 12,537 oldest-old individuals were female (weighted, 58.6%, hereafter); 3,767 were octogenarians, 8,260 were nonagenarians, and 8,201 were centenarians. After controlling for other covariates, nonagenarians and centenarians experienced a greater prevalence of full dependence (average marginal differences [95% CI]: 2.7% [0%, 5.3%]; 3.8% [0.3%, 7.9%]) and partial dependence (6.9% [3.4%, 10.3%]; 15.1% [10.5%, 19.8%]) but a smaller prevalence of partial independence (-8.9% [-11.6%, -6.2%]; -16.0% [-19.1%, -12.8%]) in ADLs than octogenarians. Nonagenarians and centenarians were less likely to die in hospitals (–3.0% [–4.7%, –1.2%]; –4.3% [–6.3%, –2.2%]). Additionally, nonagenarians and centenarians reported more medical expenditures during the last year of life than octogenarians with no statistically significant differences.ConclusionThe oldest-old experienced an increased prevalence of full and partial dependence in ADLs with increasing age and reported a decline in the prevalence of full independence. Compared with octogenarians, nonagenarians and centenarians were less likely to die in hospitals. Therefore, future policy efforts are warranted to optimise the service provision of long-term and EOL care by age patterns for the oldest-old population in China.

Ambitions for palliative and end of life care: mapping examples of use of the framework across England

BackgroundSince 2015, the Ambitions for Palliative and End of Life Care: a national framework for local action has provided guidance for care within England and beyond. Relaunched in 2021, the Framework sets out six Ambitions which, collectively, provide a vision to improve how death, dying and bereavement are experienced and managed. However, to date, there has been no central evaluation of how the Framework and its Ambitions have been implemented within service development and provision. To address this evidence gap, we investigated understanding and use of the Framework.MethodsAn online questionnaire survey was conducted to identify where the Framework has been used; examples of how it has been used; which Ambitions are being addressed; which foundations are being used; understanding of the utility of the Framework; and understanding of the opportunities and challenges involved in its use. The survey was open between 30 November 2021–31 January 2022, promoted via email, social media, professional newsletter and snowball sampling. Survey responses were analysed both descriptively, using frequency and cross-tabulations, and exploratively, using content and thematic analysis.Results45 respondents submitted data; 86% were from England. Findings indicate that the Framework is particularly relevant to service commissioning and development across wider palliative and end of life care, with most respondents reporting a focus on Ambition 1 (Each person is seen as an individual) and Ambition 3 (Maximising comfort and wellbeing). Ambition 6 (Each community is prepared to help) was least likely to be prioritised, despite people welcoming the focus on community in national guidance. Of the Framework foundations, ‘Education and training’ was seen as most necessary to develop and/or sustain reported services. The provision of a shared language and collaborative work across sectors and partners were also deemed important. However, there is some indication that the Framework must give more prioritisation to carer and/or bereavement support, have greater scope to enhance shared practice and mutual learning, and be more easily accessible to non-NHS partners.ConclusionsThe survey generated valuable summary level evidence on uptake of the Framework across England, offering important insights into current and past work, the factors impacting on this work and the implications for future development of the Framework. Our findings suggest considerable positive potential of the Framework to generate local action as intended, although difficulties remain concerning the mechanisms and resources necessary to enact this action. They also offer a valuable steer for research to further understand the issues raised, as well as scope for additional policy and implementation activity.

Twelve Tips for Integrating Bioethics and Palliative Care in Medical Education

It is important to integrate bioethics and palliative care (PC) in addition to providing the appropriate teaching of end-oflife care to future doctors. This article presents an evaluation of the updated literature and thus proposes to integrate the principles of bioethics with PC in medical schools. Accordingly, these 12 tips aim to highlight the necessary key points to help facilitate the teaching of PC and bioethics to medical students. These points are: addressing of bioethical theories according to the context experienced; supporting shared decisions; encouraging the development of a care plan based on beneficence, non-maleficence, and dignity; relieving uncomfortable physical symptoms and the avoidance of dysthanasia; promoting comfort through palliative sedation; understanding vulnerabilities and promoting the patient’s autonomy; taking care of those who care; integratingspirituality and the respect of religious practices; taking care of family members and informal caregivers; understanding and respecting research participants; developing awareness of medically assisted death and ethical-legal limits; and including PC and bioethics themes in all student experiences related to terminality during medical school.

Trust as a Central Factor in Hospice Enrollment Disparities Among Ethnic and Racial Minority Patients: A Qualitative Study of Interrelated and Compounding Factors Impacting Trust.

Background: Disparities in end-of-life (EOL) care remain among ethnic/racial minority populations. Choosing hospice care in the United States depends on goals-of-care discussions founded on trust. While studies examine hospice enrollment disparities and others explore trust in hospice settings in general, very few explicitly examine the role of trust in hospice enrollment disparities. Objectives: To explore factors impacting trust and how these might contribute to disparities in hospice enrollment. Design: A qualitative, individual interview study, based on grounded theory. Setting/Subjects: Setting: Rhode Island, USA. Participants: Multiple stakeholders in EOL care, with diverse professional and personal backgrounds. Measurements: In-depth semistructured individual interviews were audio-recorded and transcribed as part of a broader study of hospice enrollment barriers in diverse patients. Analysis: Five researchers did a secondary data analysis, focusing on trust as the central phenomenon of interest. Researchers independently analyzed transcripts, then held iterative group analysis meetings until they reached consensus regarding themes, subthemes, and relationships. Results: Twenty-two participants included five physicians, five nurses, three social workers, two chaplains, one nursing assistant, three administrators, and three patient caregivers/family. Interviews reveal that trust is multidimensional, involving personal- and systems-level trust, and both locus and degree of trust. Factors impacting trust include: fear; communication/relationships; knowledge of hospice; religious/spiritual beliefs; language; and cultural beliefs/experiences. While some are common across groups, several are more prevalent in minority populations. These factors appear to interact in complex ways, unique to individual patients/families, compounding their impact on trust. Conclusions: While gaining patient/family trust regarding EOL decision making is challenging across all groups, minority patients often experience additional compounding factors impacting trust building. More research is needed to mitigate the negative ways these interacting factors impact trust.

Preclinical patient transport at the end of life

Although most people would like to die at home, many die in hospitals. The study shows physicians' and paramedics' experiences with prehospital care of patients at the end of life. Using an anonymous online questionnaire, primary care physicians and ambulance personnel in the Frankfurt am Main metropolitan area were surveyed about their experiences with end of life care. A total of 63primary care physicians (PCP) and 62emergency medical service staff (EMS) answered the questionnaire (female 31.2%, male 68.8%). Of the respondents 65.8% reported that patients are often still transported to hospital at the end of life. Of the participants 17.9% felt confident in their assessment of apatient at the end of life, 33.3% of PCP and 8.5% of EMS felt confident about subsequent treatment and 91.9% of PCP and 96.2% of EMS reported that they always/often ask about an advance healthcare directive. Of the participants 98.3% felt that EMS rarely/never ask about advance care planning, 78.7% of all participants would rarely/never ask about it and 90.4% of EMS would like to have alegally secure emergency document to guide their actions. Transporting patients at the end of life is part of everyday prehospital practice. There are uncertainties in the assessment and care of these patients. In the future, rescue service and medical training should include specific palliative care strategies. Advance healthcare directive and advance care planning must be more widely recognized by the medical community, so that in emergency situations the desired corridors of action in the best interests of the patient are quickly made known.

Use of palliative sedation following Medical Assistance in Dying (MAiD) legislation: A mixed-methods study of palliative care providers.

Palliative sedation (PS) and Medical Assistance in Dying (MAiD) are options for end-of-life (EOL) care in Canada, since the latter was legalized in 2016. Little research to date has explored the potential impact of MAiD on PS practices. This study investigated physicians' perceptions of their practices surrounding PS and how they may have changed since 2016. A survey (n=37) and semi-structured interviews (n=23) were conducted with palliative care providers throughout Ontario. Questions focused on PS practices and explored potential changes following the implementation of MAiD. Codes were determined collaboratively and applied line-by-line by 2 independent investigators. Survey responses were analyzed alongside interview transcripts and noted to be concordant. Themes were generated via reflexive thematic analysis. Thematic analysis yielded the following themes: (1) Increased patient/family knowledge of EOL care; (2) More frequent/fulsome discussions; (3) Normalization/repositioning of PS; and (4) Conflation and differentiation of PS/MAiD. Across these themes, participants espoused increased patient, family, and provider comfort with PS, which may stem equally from the advent of MAiD and the growth of palliative care in general. Participants also emphasized that, following MAiD, PS is viewed as a less radical intervention. This is the first study to investigate physicians' perspectives on the impact of MAiD on PS. Participants strongly opposed treating MAiD and PS as direct equivalents, given the differences in intent and eligibility. Participants stressed that MAiD requests/inquiries should prompt individualized assessments exploring all avenues of symptom management - the results of which may or may not include PS.

End-of-Life Care in the Last Three Months before Death in Older Patients with Cancer in Belgium: A Large Retrospective Cohort Study Using Data Linkage

This study aims to describe end-of-life (EOL) care in older patients with cancer and investigate the association between geriatric assessment (GA) results and specialized palliative care (SPC) use. Older patients with a new cancer diagnosis (2009–2015) originally included in a previous multicentric study were selected if they died before the end of follow-up (2019). At the time of cancer diagnosis, patients underwent geriatric screening with Geriatric 8 (G8) followed by GA in case of a G8 score ≤14/17. These data were linked to the cancer registry and healthcare reimbursement data for follow-up. EOL care was assessed in the last three months before death, and associations were analyzed using logistic regression. A total of 3546 deceased older patients with cancer with a median age of 79 years at diagnosis were included. Breast, colon, and lung cancer were the most common diagnoses. In the last three months of life, 76.3% were hospitalized, 49.1% had an emergency department visit, and 43.5% received SPC. In total, 55.0% died in the hospital (38.5% in a non-palliative care unit and 16.4% in a palliative care unit). In multivariable analyses, functional and cognitive impairment at cancer diagnosis was associated with less SPC. Further research on optimizing EOL healthcare utilization and broadening access to SPC is needed.

Euthanasia in the practice of the european court of human rights

The paper aims to shed light on the interpretation of mercy killing, i.e., euthanasia, in European Court of Human Rights cases. This controversial phenomenon has a specific legal status. More specifically, due to the complexity of euthanasia, it is impossible to create universally accepted international standards. On the other hand, modern society creates a need to expand the legal boundaries regarding bioethical issues related to the compassionate endof-life care. The European Court of Human Rights is a unique international organization that interprets universal legal documents, especially the European Convention on Human Rights, in the context of euthanasia. Bearing this in mind, it is important to collect and analyze the information resulting from the specific decision-making process of the European Court of Human Rights. The Court’s past and future similar cases will certainly affect the future legal status of euthanasia both internationally and at the level of member states.

Medical care costs at the end of life among older adults with cancer: a national health insurance data-based cohort study

ObjectiveAlong with aging, the elderly population with cancers is increasing. The costs of end-of-life (EOL) care are particularly high among cancer patients. The purpose of this study was to investigate the trends in medical costs in the last year of life among older adults with cancer.Design, setting, and participantsUsing the Health Insurance Review and Assessment Services (HIRA) database for the period 2016–2019, we identified older adults aged ≥ 65 years who had a primary diagnosis of cancers and high-intensity treatment at least once in the intensive care unit (ICU) of tertiary hospitals.Main outcomes and measuresHigh-intensity treatment was defined as receiving at least one of the following treatments: cardiopulmonary resuscitation, mechanical ventilation, extracorporeal membrane oxygenation, hemodialysis, and transfusion. The EOL medical treatment costs were calculated by dividing periods 1, 2, 3, 6, and 12 months from the time of death, respectively.ResultsThe mean total EOL medical expense per older adult during the year before death was $33,712. The cost of EOL medical expenses for three months and one month before subjects’ death accounted for 62.6% ($21,117) and 33.8% ($11,389) of total EOL costs, respectively. Among subjects who died while receiving high-intensity treatment in the ICU, the costs associated with medical treatments that occurred during the last month before death were 42.4% ($13,841) of the total EOL expenses during the year.ConclusionThe findings indicate that EOL care expenditures for the older population with cancer are highly concentrated until the last month. The intensity of medical care is an important and challenging issue in terms of care quality and cost suitability. Efforts are needed to properly use medical resources and provide optimal EOL care for older adults with cancer.

The roles of preparation, location, and palliative care involvement in parent-perceived child suffering at the end of life

PurposeParents' perceptions of their child's suffering affect their bereavement experience. Identifying factors that shape parental perceptions of suffering could help build effective supportive interventions for children and parents navigating EOL and grief. We aimed to compare parent-perceived child suffering between diagnostic groups and identify related factors. Design and methodsWe combined databases from 3 surveys of parents whose children who died following cancer, a complex chronic condition (CCC), or advanced heart disease. We built multivariable logistic regression models to identify relationships between parent-perceived child suffering and parent/child, illness experience, and care-related factors. ResultsAmong 277 parents, 41% rated their child's suffering as moderate or high. Fifty-seven percent of parents whose child died from cancer reported that their child suffered “a lot” or “a great deal” at EOL, compared to 33% whose child died from a CCC, and 17% whose child died from heart disease (P < 0.001). Preparation for EOL symptoms was associated with decreased parent-perceived child suffering in multivariable modeling, with parents who were prepared for EOL 68% less likely to rate their child's suffering as high compared to those who felt unprepared (AOR: 0.32, CI [0.13–0.77], P = 0.013). ConclusionsPreparing families for their child's EOL may help mitigate lingering perceptions of suffering. Operationalizing preparation is crucial to optimizing family support during EOL care. Implications to practicePreparation for symptoms, and access to resources, including medical/psychosocial interventions and staff, may help ease parental perception of EOL suffering. Clinicians should prioritize preparing families for what to expect during a child's dying process.

Social and healthcare professionals' experiences of end-of-life care planning and documentation in palliative care.

To explore social and healthcare professionals' experiences of end-of-life (EOL) care planning and documentation in palliative care. A qualitative study with narrative methodology. A narrative method with interviews was used. Data were collected from purposively selected registered nurses (n = 18), practical nurses (n = 5), social workers (n = 5) and physicians (n = 5) working in palliative care unit in five hospitals in three hospital districts. Content analysis within narrative methodologies was undertaken. Two main categories - patient-oriented EOL care planning and multi-professional EOL care planning documentation- were formed. Patient-oriented EOL care planning included treatment goals planning, disease treatment planning and EOL care setting planning. Multi-professional EOL care planning documentation included healthcare professionals' and social professionals' perspectives. Healthcare professionals' perspectives on EOL care planning documentation included benefits of structured documentation and poor support of electronic health record (EHR) for documentation. Social professionals' perspective on EOL care planning documentation included usefulness of multi-professional documentation and externality of social professionals in multi-professional documentation. The results of this interdisciplinary study demonstrated a gap between what healthcare professionals consider important in Advance Care Planning (ACP), that is, proactive, patient-oriented and multi-professional EOL care planning and the ability to access and document this in a useful and accessible way in the EHR. Knowledge of the patient-centered EOL care planning and multi-professional documentation processes and their challenges are prerequisites for documentation to be supported by technology. The Consolidated Criteria for Reporting Qualitative Research checklist was followed. No patient or public contribution.

Appropriateness of end-of-life care for children with genetic and congenital conditions: a cohort study using routinely collected linked data.

This study aims to evaluate the appropriateness of end-of-life care for children with genetic and congenital conditions. This is a decedent cohort study. We used 6 linked, Belgian, routinely collected, population-level databases containing children (1-17) who died with genetic and congenital conditions in Belgium between 2010 and 2017. We measured 22 quality indicators, face-validated using a previously published RAND/UCLA methodology. Appropriateness of care was defined as the overall "expected health benefit" of given healthcare interventions within a healthcare system exceeding expected negative outcomes. In the 8-year study period, 200 children were identified to have died with genetic and congenital conditions. Concerning appropriateness of care, in the last month before death, 79% of children had contact with specialist physicians, 17% had contact with a family physician, and 5% received multidisciplinary care. Palliative care was used by 17% of the children. Concerning inappropriateness of care, 51% of the children received blood drawings in the last week before death, and 29% received diagnostics and monitoring (2 or more magnetic resonance imaging scans, computed tomography scans, or X-rays) in the last month. Conclusion: Findings suggest end-of-life care could be improved in terms of palliative care, contact with a family physician and paramedics, and diagnostics and monitoring in the form of imaging. What is Known: • Previous studies suggest that end-of life care for children with genetic and congenital conditions may be subject to issues with bereavement, psychological concerns for child and family, financial cost at the end of life, decision-making when using technological interventions, availability and coordination of services, and palliative care provision. Bereaved parents of children with genetic and congenital conditions have previously evaluated end-of-life care as poor or fair, and some have reported that their children suffered a lot to a great deal at the end of life. • However, no peer-reviewed population-level quality evaluation of end-of-life care for this population is currently present. What is New: • This study provides an evaluation of the appropriateness of end-of-life care for children who died in Belgium with genetic and congenital conditions between 2010 and 2017, using administrative healthcare data and validated quality indicators. The concept of appropriateness is denoted as relative and indicative within the study, not as a definitive judgement. • Our study suggests improvements in end-of-life care may be possible, for instance, in terms of the provision of palliative care, contact with care providers next to the specialist physician, and diagnostics and monitoring in terms of imaging (e.g., magnetic resonance imaging, computed tomography scans). Further empirical research is necessary, for instance, into unforeseen and foreseen end-of-life trajectories, to make definitive conclusions about appropriateness of care.