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Background: For a patient’s legal right to make end-of-life treatment decisions to be respected, health care practitioners, patients and their substitute decision-makers must know what rights exist and how to assert them (or support others to assert them). Yet very little is known about what enhances or obstructs the operationalization of legal rights from the perspective of patients, family members and substitute decision-makers. Aim: To explore barriers and facilitators to the operationalization of rights in end-of-life decision-making from the perspectives of terminally-ill patients and family members and substitute decision-makers of terminally ill patients in Australia. Design: Semi-structured interviews (face to face and telephone) with patients, family or substitute decision-makers experienced in end-of-life decision-making completed between November 2016 and October 2017. A thematic content analysis of interview transcripts. Setting/participants: Purposive sampling across three Australian states provided 16 terminally-ill patients and 33 family and/or substitute decision-makers. Results: Barriers and facilitators emerged across three overlapping domains: systemic factors; individual factors, influenced by personal characteristics and decision-making approach; and communication and information. Health care practitioners play a key role in either supporting or excluding patients, family and substitute decision-makers in decision-making. Conclusion: In addition to enhancing legal literacy of community members and health practitioners about end-of-life decision-making, support such as open communication, advocacy and help with engaging with advanced care planning is needed to facilitate people operationalizing their legal rights, powers and duties. Palliative care and other support services should be more widely available to people both within and outside health systems.

Zusammenfassung Hintergrund Der überwiegende Teil der Patienten in Deutschland verstirbt entgegen ihres Wunsches nicht zu Hause. Eine Entscheidungshilfe für das notfallmedizinische Team kann nachfolgende Klinikeinweisungen von Patienten am Lebensende vermeiden. Material und Methoden Die Entscheidungshilfe Notarzt wurde im Rahmen des G-BA-Projektes AVENUE-Pal basierend auf einem Expertenkonsens mittels qualitativer und quantitativer Befragungen entwickelt. Sie stellt einen Teilaspekt des Gesamtprojektes dar. Ergebnisse Die EH Notarzt definiert 7 Ziele, die durch die Dimensionen „Information“, „Beratung“, „Unterstützung“, „Schulung“, „Anleitung“, „Übung“, „Kooperation“ und „Dokumentation“ erreicht werden sollen. Die EH Notarzt stellt eine Möglichkeit der Optimierung der notfallmedizinischen Behandlung von Patienten am Lebensende dar. Diskussion Die EH Notarzt ist eine Entwicklung zur Verbesserung der präklinischen Versorgung von Patienten am Lebensende und zur Vermeidung von Klinikeinweisungen am Lebensende. Derzeit ist die EH Notarzt ein theoretisches Hilfsmittel, welches in die praktische Anwendung überführt werden und weiterhin an die Notwendigkeiten der täglichen Patientenversorgung angepasst werden muss.

Purpose At the end of a building’s lifecycle, there are several limitations to the decision-making process (DMP). There is a lack of data available from the building’s history, the difficulty in assessing the condition of a building and the variety of stakeholders’ needs that have to be satisfied. The purpose of this paper is to answer the question: how would end-of-life (EOL) DMP change when buildings will have been digitally built? The answer will be illustrated through a conceptual framework. Design/methodology/approach A qualitative analysis of the existing literature has been performed to identify the elements within building information modelling (BIM) and advanced digital technologies that could be of support to the DMP. The findings have been collected and summarised in a conceptual framework that has been validated and enhanced through online interviews with industry experts. Findings The enhanced framework has identified that BIM technology would bring the benefit of providing the initial digital data source, from which machine learning and data analytics would then extract the relevant data needed to measure accurately the criteria during the analysis of the EOL options put on the table. Originality/value The findings of this research could contribute to developing the software modules making the bridge between BIM and machine learning technologies, to implement them in the EOL DMP.

End-of-life decision making involves clinicians, patients, and relatives; yet, the law in Israel hardly recognises the role of relatives. This raises the question of the law’s impact in practice and, hence, whether it should be amended. This issue is examined on the basis of findings from a qualitative, interview-based study conducted in Israel among relatives of dying patients. The findings indicate that there are areas in which clinicians and relatives do not adhere to the law in the end-of-life decision-making process. For example, they do not always ascertain the patient's end-of-life preferences, which ignores a patient's right to autonomy and their right to make informed decisions. The apparent gaps between the actual conduct of clinicians and relatives on the one hand and the directives of the Israeli Dying Patient Act 2005 on the other, lead us to propose several changes to the Act.

This paper analyzes the opinions on and attitudes towards the end of life among the population residing in Argentina. The data presented are taken from the Second National Survey of Religious Beliefs and Attitudes in Argentina, which was conducted on a multi-stage sample of 2421 cases in 89 districts throughout the country. Opinions about the end of life include positions in favor of euthanasia, requesting life extension through life support technologies, and leaving death to God’s will. Religious beliefs and affiliations prove to be determining variables in the positions taken by Argentine citizens regarding the end of life, death, and euthanasia. Furthermore, among those without any religious affiliation, some positions of autonomy over their bodies stand out: prolonging life and bringing life to an end, which means that their support for euthanasia can be assumed. The data presented here intend to contribute to planning health policies about the end-of-life process. The different views on this process or, in other words, the beliefs, values, and needs of patients and their families have a unique relevance that must be considered in the organization of care settings in end-of-life contexts. El presente documento analiza las opiniones y actitudes hacia el final de la vida entre la población residente en Argentina. Los datos presentados fueron tomados de la Segunda Encuesta Nacional de Creencias y Posturas Religiosas en Argentina, que se realizó en una muestra en varias etapas para 2421 casos en 89 distritos de todo el país. Las opiniones sobre el final de la vida incluyen posiciones a favor de la eutanasia, la solicitud de prolongación de la vida por medio de tecnologías de soporte vital y dejar la muerte a la voluntad de Dios. Las creencias y afiliaciones religiosas demuestran ser variables determinantes en las posiciones tomadas por los ciudadanos argentinos en relación con el fin de la vida, la muerte y la eutanasia. Además, entre los que no tienen ninguna afiliación religiosa, destacan algunas posiciones de autonomía sobre sus cuerpos: prolongar la vida y poner fin a la vida, lo que significa que se puede asumir su apoyo a la eutanasia. Los datos presentados aquí tienen la intención de contribuir a la planificación de las políticas de salud sobre el proceso del final de vida. Las diferentes opiniones sobre este proceso o, en otras palabras, las creencias, valores y necesidades de los pacientes y sus familias tienen una relevancia única que debe considerarse en la organización de entornos de atención en contextos del final de la vida. Neste documento, analisam-se as opiniões e as atitudes no fim da vida entre a população residente na Argentina. Os dados apresentados foram coletados da Segunda Pesquisa Nacional de Crenças e Posicionamentos Religiosos na Argentina, que foi realizada numa amostra em várias etapas para 2.421 casos em 89 distritos de todo o país. As opiniões sobre o fim da vida incluem posicionamentos a favor da eutanásia, a solicitação de prolongação da vida por meio de tecnologias de apoio vital e deixar a morte à vontade de Deus. As crenças e as afiliações religiosas demonstram ser variáveis determinantes nos posicionamentos tomados pelos cidadãos argentinos com relação ao fim da vida, à morte e à eutanásia. Além disso, entre os que não têm afiliação religiosa, destacam alguns posicionamentos de autonomia sobre seus corpos: prolongar a vida e dar fim à vida, o que significa que pode ser assumido seu apoio à eutanásia. Os dados apresentados aqui têm o objetivo de contribuir para planejar as políticas de saúde sobre o processo de fim da vida. As diferentes opiniões sobre esse processo ou, em outras palavras, as crenças, os valores e as necessidades dos pacientes e suas famílias têm uma relevância única que deve ser considerado na organização de contextos de entornos de atenção em contextos no fim da vida.

Economic motivations are key drivers of human behavior. Unfortunately, they are largely overlooked in literature related to medical decisionmaking, particularly with regard to end-of-life care. It is widely understood that the directions of a proxy acting in bad faith can be overridden. But what of cases in which the proxy or surrogate appears to be acting in good faith to effectuate the patient’s values, yet doing so directly serves the decision-maker’s financial interests? Such situations are not uncommon. Many patients care as deeply about economic wellbeing of their families as they do for their own lives and health. This brief work examines three scenarios that raise ethical issues regarding the role of pecuniary motives in making critical medical decisions. Each scenario presents a potential financial conflict of interest between an incapacitated patient and a third-party decision-maker and offers a framework for integrating ethical and legal concerns into clinical care. It is our hope that this work prepares physicians for unexpected ethical conflicts of interest and enables them to further the interests of his or her patients.

BACKGROUND: Lay health workers (LHWs) engaging African Americans in conversations about advance care planning (ACP) often have felt unprepared for the challenges of communicating with patients as they approach the end of life. We developed a church-based training curriculum, LIGHT (Listening, Identifying, Guiding, Helping, Translating), in response to this need. OBJECTIVES: To evaluate the LIGHT Curriculum by assessing its impact on knowledge, beliefs and attitudes, and self-efficacy of the learners; describing their assessment of the classroom component of the training; and describing their visit activities, and perceptions derived during client visits. DESIGN: prospective, descriptive, pre- and post-training evaluation. SETTINGS/SUBJECTS: Thirty-seven LHWs (Comfort Care Supporters [CCSs]) from three African American Churches (United States). Measurements: knowledge, beliefs and attitudes, assessment of classroom training, self-efficacy, visit activities, and perceptions. RESULTS: Pre-to-post knowledge scores (range 0–26) increased by a mean of 5.23, p

Background: Surrogates often do not accurately predict older people's preferences about end-of-life (EOL) care. Few studies have examined the impact of advance care planning (ACP) on EOL decision-making consistency between older people and their surrogates, and these studies have yielded conflicting results. Objectives: To evaluate the effectiveness of ACP in improving EOL decision-making consistency between older people and their surrogates. Design: The intervention in this pre-post quasi-experimental design included an informative video, a brochure about ACP, and a guided discussion about EOL wishes. Setting: Two geriatric wards in a medical center in northern Taiwan. Subjects: One hundred eight participants, as 54 pairs of older people and their surrogates, were randomly assigned to either the experimental or control group. The experimental group received an intervention, while the control group received usual care. Measurements: Life-Support Preferences Questionnaire. Results: The intervention did not improve decision-making consistency between older people and their surrogates. This was the first time that most pairs discussed specific EOL decisions, so additional preparation may improve comfort with this topic. This study also found that some older people had difficulty concentrating on the educational brochure or understanding the related terms. Conclusions: Preparation for ACP discussion is needed for older people and their surrogates. Longer-term effects of ACP should be monitored because ACP interventions may have enhanced empathy between older people and their surrogates. Additionally, a culturally sensitive illustrated questionnaire that explains life-support preferences and ACP topics may improve communication between older people and their surrogates.

Aim Parents' role as end-of-life decision-makers for their child has become largely accepted Western health-care practice. How parents subsequently view and live with the end-of-life decision (ELD) they made has not been extensively examined. To help extend understanding of this phenomenon and contribute to care, as a part of a study on end-of-life decision-making, bereaved parents were asked about the aftermath of their decision-making. Methods A qualitative methodology was used. Semi-structured interviews were conducted with parents who had discussed ELDs for their child who had a life-limiting condition and had died. Data were thematically analysed. Results Twenty-five bereaved parents participated. Results indicate that parents hold multi-faceted views about their decision-making experiences. An ELD was viewed as weighty in nature, with decisions judged against the circumstances that the child and parents found themselves in. Despite the weightiness, parents reflected positively on their decisions, regarding themselves as making the right decision. Consequently, parents' comments demonstrated being able to live with their decision. When expressed, regret related to needing an ELD, rather than the actual decision. The few parents who did not perceive themselves as their child's decision-maker subsequently articulated negative reactions. Enduring concerns held by some parents mostly related to non-decisional matters, such as the child's suffering or not knowing the cause of death. Conclusion Results suggest that parents can live well with the ELDs they made for their child. End-of-life decision-making knowledge is confirmed and extended, and clinical support for parents informed.

Controlled donation after circulatory death (cDCD) occurs after a decision to withdraw life‐sustaining treatment and subsequent family approach and approval for donation. We currently lack data on factors that impact the decision‐making process on withdraw life‐sustaining treatment and whether time from admission to family approach, influences family consent rates. Such insights could be important in improving the clinical practice of potential cDCD donors. In a prospective multicenter observational study, we evaluated the impact of timing and of the clinical factors during the end‐of‐life decision‐making process in potential cDCD donors. Characteristics and medication use of 409 potential cDCD donors admitted to the intensive care units (ICUs) were assessed. End‐of‐life decision‐making was made after a mean time of 97 hours after ICU admission and mostly during the day. Intracranial hemorrhage or ischemic stroke and a high APACHE IV score were associated with a short decision‐making process. Preserved brainstem reflexes, high Glasgow Coma Scale scores, or cerebral infections were associated with longer time to decision‐making. Our data also suggest that the organ donation request could be made shortly after the decision to stop active treatment and consent rates were not influenced by daytime or nighttime or by the duration of the ICU stay., For potential donation after circulatory death donors, the authors assess the end‐of‐life decision‐making process from admission to the decision to withdraw life‐sustaining treatment and show that consent rates for organ donation are not associated with either intensive care unit stay duration or day‐ versus nighttime family approach.

Die amyotrophe Lateralsklerose (ALS) ist die h��ufigste adulte neurodegenerative Motoneuronenerkrankung und f��hrt zu weitreichenden Einschr��nkungen der physischen Funktionen sowie zu respiratorischer Insuffizienz. Aktuell ist keine kurative Therapie verf��gbar. Allerdings sind symptomatische Interventionen m��glich, die lebensverl��ngernde Effekte haben k��nnen: Die nicht-invasive Beatmung (NIV), die invasive Beatmung via Tracheostoma (IV) und die Magensonde (PEG). Viele Patienten entwickeln unter diesen Interventionen eine gute Lebensqualit��t. Au��enstehende wie Angeh��rige sch��tzen diese allerdings oft falsch ein. Im Laufe der ALS m��ssen viele existentielle Fragen beantwortet werden. F��r andere Erkrankungen ist bekannt, dass Patienten h��ufig mit ihren Angeh��rigen und ��rzten gemeinsam Entscheidungen im Rahmen eines Shared Decision Makings (SDM) treffen wollen. Ob dies auch f��r die ALS zutrifft, war bislang noch offen. Oft m��ssen Angeh��rige auch anstelle des Patienten als Proxy entscheiden, z.B. aufgrund bulb��rer Einschr��nkung. ��bergeordnetes Ziel dieser Arbeit war daher, das Entscheidungsverhalten von Patienten und deren Angeh��rigen im Rahmen der ALS n��her zu untersuchen. Damit soll auch hinterfragt werden, inwiefern durch Angeh��rige der Patientenwille gewahrt werden kann. Die in dieser Arbeit adressierten Entscheidungen waren ��berwiegend existentieller Natur und bezogen sich mitunter auf lebensverl��ngernde Ma��nahmen (NIV, IV, PEG) und deren m��glichen Behandlungsabbruch bei Verschlechterung des ALS-Patienten. Dazu wurden 84 ALS-Patienten der Neurologischen Universit��tsklinik Ulm sowie deren 84 Angeh��rige durch standardisierte, validierte Frageb��gen befragt. Dies geschah mit Hilfe der Frageb��gen zu lebensrelevanten Entscheidungen nach Lul��. Weiter wurde die Depressivit��t mit dem ALS-Depressionsinventar 12 Items (ADF-12), die Lebensqualit��t nach Bernheim, sowie Pr��ferenzen in der Entscheidungsfindung durch die Control Preference Scale (CPS) und durch freie Fragen aus dem Protokoll der Studie NEEDSinALS (www.NEEDSinALS.com) erfasst. Die Daten der einzelnen Patienten-Angeh��rigen-Dyaden wurden mit Hilfe des Mann-Whitney-Test verglichen. Faktoren, die mit der Proxy-Entscheidung assoziiert waren, sollten mit einer ANOVA identifiziert werden. Im Mittelwertvergleich zeigte sich hinsichtlich der Inanspruchnahme von lebenserhaltenden Interventionen und des Einbezugs im Rahmen des SDM kein signifikanter Unterschied zwischen Patienten und Angeh��rigen, auch wenn deskriptiv Unterschiede deutlich wurden. Allerdings zeigte sich hinsichtlich eines Behandlungsabbruches von IV und NIV bei Verschlechterung des Zustandes des Patienten ein signifikanter Unterschied zwischen den Angeh��rigen und Patienten in ihrem Antwortverhalten. Es konnte in dieser Arbeit eine signifikante Assoziation der Patientenentscheidung pro IV und PEG und dem Wunsch der Angeh��rigen nach lebenserhaltenden Ma��nahmen gezeigt werden. Au��erdem wurde in dieser Arbeit eine signifikante Assoziation des Wunsches der Angeh��rigen nach lebensverl��ngernden Ma��nahmen und deren Proxy-Entscheidung f��r PEG und IV gezeigt. Diese Arbeit konnte ebenfalls zeigen, dass weder die gesch��tzte Lebensqualit��t der Patienten, noch deren gesch��tzte Depression oder die eigene Lebensqualit��t und Beeintr��chtigung mit der Proxy-Entscheidung der Angeh��rigen assoziiert waren. Die eigene Depressivit��t der Angeh��rigen war allerdings zum Teil signifikant mit der Proxy-Entscheidung (IV) assoziiert. Diese Arbeit konnte damit f��r die ALS zeigen, dass viele Patienten ein SDM anstrebten und Angeh��rige dies auch richtig einsch��tzten. Dabei involvierten sich die Angeh��rigen in der Proxy-Entscheidung tendenziell eher selbst mehr und weniger den Arzt als der Patient dies tats��chlich wollte. Ob der Wunsch der Angeh��rigen nach mehr Geh��r in der Versorgung der ALS-Patienten gerechtfertigt ist, bleibt daher fraglich. In dieser Arbeit wurde zudem deutlich, dass in besonders kritischen F��llen des Behandlungsabbruches die ALS-Patienten und deren Proxy sich in ihrem Antwortverhalten signifikant unterschieden und die Proxy-Entscheidung und der Wunsch der Angeh��rigen, dass der Patient Lebensverl��ngerung in Anspruch nimmt, signifikant assoziiert waren. Der Patientenwille kann in diesen F��llen ggf. nicht korrekt durch Angeh��rige gewahrt werden und Angeh��rige orientieren sich bei der Proxy-Entscheidung m��glicherweise mehr an den eigenen Pr��ferenzen als an denen der Patienten. Auch die Invasivit��t des Verfahrens und der subjektive Impact dessen schien eine Rolle f��r die Proxy-Entscheidung zu spielen. In dieser Arbeit konnten somit mehrere, mit der Proxy-Entscheidung im Rahmen der ALS assoziierte Faktoren identifiziert werden: W��nsche der Angeh��rigen, Invasivit��t der Intervention und Depressivit��t der Angeh��rigen. Die gesch��tzte Lebensqualit��t der Patienten, Beeintr��chtigung und Einschr��nkung durch die ALS und Depressivit��t der Patienten schienen hier nicht mit der Proxy-Entscheidung assoziiert. Diese Arbeit konnte f��r die ALS damit deutlich machen, dass nicht in allen F��llen eine Wahrung des Patientenwillens durch Angeh��rige m��glich scheint und diskutiert vor diesem Hintergrund, Wege zur Wahrung des Patientenwillens wie die Patientenverf��gung oder gemeinsame Entscheidungsmodelle. Diese Ergebnisse sollten weiter dazu genutzt werden, im klinischen Alltag die Wahrung der Autonomie der ALS-Patienten und patientenzentriertes Entscheiden zu verbessern, aber es auch erm��glichen, Angeh��rige ad��quat in die klinische Versorgung von ALS-Patienten einzubeziehen, um so auch ihre Versorgung zu optimieren und ihre Last zu verringern.

The phenomenon of end-of-life (EOL) decision-making is a lived experience by which individuals or families make decisions about care they will receive prior to death. A postmodern philosophical approach suggests EOL decision-making is a varied contextual phenomenon that is highly influenced by subjectivity. Thus, there is no specific definition for the phenomenon of EOL decision-making. Watson’s theory of human caring complements a postmodern approach in guiding the nursing process of caring for individuals as they experience EOL decision-making.

This paper examines interrelated dichotomies in social anthropology and cross-cultural research on advance care directives (ACDs). It aims to recast the disjuncture between individual (Western) sel...

Background:The study's main aim was to assess the end-of-life decision-making capacity and health-related values of older people with serious mental illness.Methods:A cross-sectional, observational study, was done at Weskoppies Psychiatric Hospital, Gauteng Province, South Africa that included 100 adults older than 60 years of age and diagnosed with serious mental illness. The Mini-Cog and a semi-structured clinical assessment of end-of-life decision-making capacity was done before a standardized interview, Assessment of Capacity to Consent to Treatment, was administered. This standardized instrument uses a hypothetical vignette to assess decision-making capacity and explores healthcare-related values.Results:The Assessment of Capacity to Consent to Treatment scores correlated (p< 0.001) with the outcomes of the semi-structured decision-making capacity evaluation. Significant correlations with impaired decision-making capacity included: lower scores on the Mini-Cog (p< 0.001); a duration of serious mental illness of 30–39 years (p= 0025); having a diagnosis of schizophrenia spectrum disorders (p= 0.0007); and being admitted involuntarily (p< 0.0001). A main finding was that 65% of participants had decision-making capacity for end-of-life decisions, were able to express their values and engage in advance care discussions.Discussion and Conclusion:Healthcare providers have a duty to initiate advance care discussions, optimize decision-making capacity, and protect autonomous decision-making. Many older patients with serious mental illness can engage in end-of-life discussions and can make autonomous decisions about preferred end-of-life care. Chronological age or diagnostic categories should never be used as reasons for discrimination, and older people with serious mental illness should receive end-of-life care in keeping with their preferences and values.

Background: Trauma increases the risk for infection, but it is unknown how infection affects goals-of-care (GOC) decision making. We sought to determine how infections impact transition to comfort ...

COVID-19 pandemic brought difficult scenarios that patients and families are facing about end- of-life decisions. This exposed some weak areas in the healthcare system where we can continue improve in reducing disparities and emphasizing advance care planning from a primary level of care. We present a case of challenges in end-of-life decision-making in a Latino patient.

With a focus on the use of narrative approaches, this article is a commentary on decision-making support for people with profound intellectual and multiple disability (PIMD) at the end-of-life. Due to improved health care, people with PIMD are living longer lives than ever before. Therefore, they are increasingly facing decisions relating to end-of-life care and planning. Despite the increased attention that has been given to end-of-life planning, opportunities to have preferences responded to at the end-of-life are more likely afforded to people considered to have cognitive and decision-making capacity. Those supporting people with PIMD to plan for and make decisions about end-of-life care face several challenges. These challenges are rooted in difficulties with communication exchange between people with PIMD and their communication partners, leading to a widely held perception of decision-making incompetence for this population. In response to this challenge, this article draws on empirical research to discuss decision-making support within the context of palliative care and advance care planning, specifically for people with PIMD. It promotes decision-making support as an approach to assist supporters of people with PIMD to allow those people’s expressions of preferences to be acknowledged and acted upon at the end-of-life. The use of narrative is presented and discussed as a tool for enabling this responsiveness, specifically within the context of end-of-life planning.

Background: Adolescents and young adults undergoing heart transplantation experience risks of morbidity and mortality both pre- and post-transplant. To improve end-of-life care for this population, it is necessary to understand their medical and end-of-life decision-making preferences. Aim: (1) To examine adolescent/young adult decision-making involvement specific to heart transplant listing, and (2) to characterize their preferences specific to medical and end-of-life decision making. Design: This cross-sectional research study utilized survey methods. Data were collected from October 2016 to March 2018. Setting/participants: Twelve adolescent and young adult patients listed for heart transplant (ages = 12–19 years) and one parent for each were enrolled at a single-center, US children’s hospital. Results: Consistent with their preferences, the majority of adolescent/young adult participants (82%) perceived a high level of involvement in the decision to be listed for transplant. Patient involvement in this decision was primarily by way of seeking advice or information from their parents and being asked to express their opinion from parents. Despite a preference among patients to discuss their prognosis and be involved in end-of-life decision making if seriously ill, only 42% of patients had discussed their end-of-life wishes with anyone. Few parents recounted having such discussions. Preferences regarding the timing and nature of end-of-life decision-making discussions varied. Conclusions: Although young people are involved in the decision to pursue heart transplantation, little attention is paid to involving them in discussions regarding end-of-life decision making in a manner that is consistent with individual preferences.

Veterinary oncology has evolved rapidly over the past 30 years, with combinations of surgery, chemotherapy, immunotherapy, and radiation therapy now representing standard practice for managing pets with cancer. Recently, additional effort has been directed toward optimizing palliative strategies for mitigating clinical signs associated with advanced-stage disease, thereby reducing patient morbidity as pet owners navigate end-of-life decision making. This is a multi-dimensional, individualized process, which demands attention to the primary neoplastic condition, concurrent diseases, and emotional needs of the family. An approach to oncologic referral and end-of-life care is described, with attention to the dynamics between oncologist, referring veterinarian, and client.

Problem Little is known about how parents perceive their role or the role of health care providers (HCPs) during end-of-life decision making (EOL DM) in the context of the pediatric intensive care unit (PICU). Eligibility criteria The authors searched CINAHL, PubMed, Ovid Medline, Web of Science, Social Science Database, PsycINFO, and Google scholar for English language studies performed in the United States related to parental perception of parental or HCP roles in EOL DM in the PICU since 2008. Sample Eleven studies of parents and health care providers (HCPs) of critically ill children in the PICU and/or receiving inpatient pediatric palliative care, and bereaved parents of PICU patients. Results Most parents reported belief that EOL DM is within the domain of parental role, a minority felt it was a physician's responsibility. Parental EOL DM is rooted more firmly in emotion and perception and a desire to be a ‘good parent’ to a child at EOL in the way they see fit than HCP recommendations or ‘medical facts’. Parents need HCPs to treat them as allies, communicate well, and be trustworthy. Conclusions Role conflict may exist between parents and HCPs who are prioritizing different attributes of the parental role. The role of the nurse in support of parental role in the PICU is not well-elucidated in the extant literature. Implications Future research should focus on what parents need from HCPs, especially nurses, to support their parental role, and factors that facilitate the development of trust and good communication.

The ethics of adolescent decision making is a complicated mine­field with laws that vary from state to state. The case of a fourteen-year-old girl, who simultaneously was diagnosed with cancer and discovered she was pregnant, highlights several weaknesses in our current approach to adolescent decision making in the context of pregnancy. In addition, adolescents with life-limiting conditions face similar challenges that can be examined through the framework of Catholic doctrine.

Historically nurses have lacked significant input in end-of-life decision-making, despite being an integral part of care. Nurses experience negative feelings and moral conflict when forced to aggressively deliver care to patients at the EOL. As a result, nurses participate in slow codes, described as a limited resuscitation effort with no intended benefit of patient survival. The purpose of this study was to explore and understand the process nurses followed when making decisions about participation in limited resuscitation. Five core categories emerged that describe this theory: (1) recognition of patient and family values at the EOL; (2) stretching time and reluctance in decision-making; (3) harm and suffering caused by the physical components of CPR; (4) nurse's emotional and moral response to delivering aggressive care, and; (5) choosing limited resuscitation with or without a physician order. Several factors in end-of-life disputes contribute to negative feelings and moral distress driving some nurses to perform slow codes in order to preserve their own moral conflict, while other nurses refrain unless specifically ordered by physicians to provide limited care through tailored orders.

Objectives:The study’s main aim was to assess the end-of-life decision-making capacity and health-related values of older people with serious mental illness.Design, Setting, and Participants:This was a cross-sectional, observational study, done at Weskoppies Psychiatric Hospital, Gauteng Province, South Africa that included 100 adults older than 60 years of age and diagnosed with serious mental illness.Measurements:Socio-demographic, diagnostic, and treatment data were collected before administration of the Mini- Cog and a semi-structured clinical assessment of end-of-life decision-making capacity. Finally, the standardized interview, Assessment of Capacity to Consent to Treatment, was administered. This standardised instrument uses a hypothetical vignette to assess decision-making capacity and explores healthcare-related values.Results:According to the semi-structured decision-making capacity assessment, 65% of participants had decision-making capacity for end-of-life decisions. The Assessment of Capacity to Consent to Treatment scores were significant (pConclusions:Two thirds of older people with serious mental illness had decision-making capacity and were able to engage in end-of-life care discussions. Healthcare providers have a duty to initiate advance care discussions, optimize decision-making capacity, and protect autonomous decision-making. Chronological age or diagnostic categories should never be used as reasons for discrimination, and older people with serious mental illness should receive end-of-life care in keeping with their preferences and values.

"Background: Conflict is unfortunately well-documented in the adult intensive care unit (AICU). In the context of end-of-life (EOL) decision-making (i.e. the withdrawal or withholding of life-sustaining treatment), conflict commonly occurs when a consensus cannot be reached between the healthcare team and the patient’s family on the “best interests” of the critically ill, incapacitated patient, as per England’s Mental Capacity Act 2005. Whilst existing literature has identified potential routes for conflict resolution, it is less clear how these approaches are perceived and utilised by stakeholders in the EOL decision-making process. Aim: We aim to explore this by systematically reviewing and synthesising the published evidence, which addresses the following research question: what does existing qualitative research reveal about physician approaches to addressing conflict arising in EOL decisions in the AICU? Methods: Peer-reviewed qualitative studies (retrieved from MEDLINE, Project Muse, EMBASE, Web of Science, PsycINFO, CINAHL and LILACS) examining conflict and dispute resolution in the context of EOL decisions in the AICU setting will be included. Two reviewers will independently screen for eligibility and extract data from either all or 10% of the included studies, with a third reviewer independently screening studies of uncertain eligibility. The ‘thematic synthesis’ approach will be utilised to analyse the resulting data (Thomas & Harden, 2008). The systematic review is currently underway, laying the foundations for a larger empirical study, undertaken for a PhD, funded by the Wellcome Trust BABEL (Balancing Best Interests in Healthcare, Ethics, and Law) Collaborative Award. The results will be presented at the conference. "

The law regulating medical end-of-life decisions aims to support patients to receive high-quality health care. It does so through ensuring treatment received reflects the person's wishes and values and protecting health professionals who provide adequate pain and symptom relief even if that treatment may coincidentally hasten death. However, good decision-making is predicated by those involved, including patients themselves and those supporting patients, being familiar with the law and the role it plays in the decision-making process. This article reports on a study exploring the role that law plays in end-of-life decision-making from the perspective of terminally-ill patients, their substitute decision-makers and family members. While participants' decision-making practices were often underpinned by a legal framework, the role of the law was largely invisible. Community education is needed for the public to know their legal rights and responsibilities, and to understand that the law plays a role in supporting end-of-life decision-making.

Background: End-of-life treatment decisions present special challenges for prehospital emergency providers. Paramedics regularly make value-laden choices that transcend technical judgment and professional skill, affecting the type of care, how and to whom it is provided. Changes in prehospital emergency care over the last decade have created new moral challenges for prehospital emergency providers; these changes have also accentuated the need for paramedics to make rapid and reasoned ethical judgments. Objective: The purpose of the study was to explore the decision-making process that occurs when prehospital emergency teams respond to an end-of-life call with a focus on how state authorized documents such as a Non-Hospital Do Not Resuscitate (NHDNR) or Medical/Physician���s Orders for Life-Sustaining Treatment (MOLST/POLST) or lack thereof inform decision-making. This paper presents the specific circumstances that informed the need for intervention from Online Medical Direction (OLMD) framed in the perspectives and words of the prehospital providers seeking that assistance. Methods: This study involved in-depth in-person interviews with 50 providers to elicit participants��� experiences in their own words using a semi-structured interview instrument. Interviews were audio recorded and transcribed with permission. Results: Five themes emerged that illuminated how and when OLMD was involved in emergency end-of-life decisions: Termination of Resuscitation (TOR); Family Revoked DNR; Missing Documents; No Documents and No CPR; and Unusual Situations. Participants illustrated how the decision to terminate efforts was best-supported when it was made by collaboration between the on-scene provider and OLMD. Participants described ethical dilemmas when families asked them to initiate CPR in the presence of DNR orders and cognitive dissonance when CPR has been initiated but a valid DNR/MOLST is subsequently located. Conclusions: The study findings demonstrate the invaluable contribution of OLMD for complex end-of-life care decisions by prehospital providers, especially when there are difficult legal, ethical, and logistical questions. OLMD provides far more than technical support.

Purpose: African Americans with life-limiting illnesses experience significant health inequities. Lay health workers (LHWs) may help overcome existing challenges of communicating with African Americans about advance care planning (ACP) and end-of-life decision-making. Church-based LHWs have some advantages over other LHWs but no curriculum exists to fully prepare them. This article describes the development, content, format, and implementation of a curriculum designed to meet this need. Methods: We created a church-based curriculum to train African American, LHWs as communications-facilitators who can support persons with life-limiting illnesses, not only with ACP but also with issues that arise as illnesses progress. Learners are church members whom we call comfort care supporters. The curriculum organizes the LHW interactions with clients by the mnemonic LIGHT: Listening, Identifying, Guiding, Helping, and Translating. Results: The final curriculum consists of three parts: (1) a 26-h classroom component delivered in nine modules organized around eight themes: meaning and prognosis of a life-limiting illness, spirituality and the meaning of death, understanding the dying process, major decisions and choices, goals of care, end-of-life services, and resources, intrafamily communication, and role and activities of the LHW; (2) a visit component; and (3) experiential, case-based discussions during monthly meetings. Conclusions: LHWs may improve quality of care and thus reduce health inequities at the end-of-life. Preparing LHWs for conversations about ACP is necessary but insufficient. This curriculum also prepares LHWs to attend to the spiritual needs of clients and to support clients with their other needs as their illness progresses.

All of those working in paediatric intensive care will be faced with difficult decisions and will be looking after children at the end of their lives. Chapter 12 addresses the principles of medical ethics. It explains the assessment of ‘Gillick’ competence and obtaining consent from children, when to consider treatment limitation and involve the palliative care team, and, in some cases, where legal advice should be sought. Brainstem death is defined, and guidance is provided on how to perform brainstem death tests, including the use of ancillary tests and specific requirements for children under the age of 2 months. The chapter discusses end-of-life care in the Paediatric Intensive Care Unit, including organ donation in children. The final scenario explores the role of the intensivist in resource allocation decision-making and intensive care triage.

Objective Comparison of nurse involvement in end of life decision making in European countries participating in ETHICUS I- 1999 and ETHICUS II- 2015. Methodology This was a prospective observational study of 22 European ICUs included in the ETHICUS-II and I. Data were collected as per the ETHICUS-I and ETHICUS-II protocols. Four questions within the ETHICUS protocols related to nurse involvement in end of life decision making were analyzed. This is a comparison of changes in nurse involvement in end of life decisions from 1999 to 2015. Setting International e-based questionnaire completed by an intensive care clinician when an end of life decision was performed on any patient. Subjects Intensive care physicians and nurses, no interventions were performed. Measurements A 20 question survey was used to describe the decision making process, on what basis was the decision made, who was involved in the decision making process, and what precise decisions were made. Results A total of 4592 cases from 22 centres are included. While there was more agreement between nurses and physicians in ETHICUS-I compared to ETHICUS-I, fewer discussions with nurses occurred in ETHICUS-II. The frequency of end of life decisions that were discussed with nurses decreased in all three regions between ETHICUS-I and ETHICUS-II. Conclusion Based on the results of the current study, nurses should be further encouraged to increase their involvement in end of life decision-making, especially those in southern Europe.

BACKGROUND/OBJECTIVES: Experts have suggested that patients represented by professional guardians receive higher-intensity end-of-life treatment than other patients, but there is little corresponding empirical data. DESIGN: Retrospective cohort study. SETTING AND PARTICIPANTS: Among Veterans aged ≥65 who died from 2011–2013, we used Minimum Data Set assessments to identify those who were nursing home residents and had moderately severe or severe dementia. We applied methods developed in prior work to determine which of these Veterans had professional guardians. Decedent Veterans with professional guardians were matched to decedent Veterans without guardians in a 1:4 ratio, according to age, gender, race, dementia severity, and nursing facility type (VA-based versus non-VA). MEASUREMENTS: Our primary outcome was intensive care unit (ICU) admission in the last 30 days of life. Secondary outcomes included mechanical ventilation and cardiopulmonary resuscitation in the last 30 days of life, feeding tube placement in the last 90 days of life, ≥3 nursing home-to-hospital transfers in the last 90 days of life, and in-hospital death. RESULTS: ICU admission was more common among patients with professional guardians than matched controls (17.5% versus 13.7%), but the difference was not statistically significant (adjusted OR, 1.33 [95% CI, 0.89–1.99]). There were no significant differences in receipt of any other treatment, nor was there a consistent pattern. Mechanical ventilation and cardiopulmonary resuscitation were more common among patients with professional guardians, while feeding tube placement, ≥3 end-of-life hospitalizations, and in-hospital death were more common among matched controls. CONCLUSION: Rates of high-intensity treatment were similar whether or not a nursing home resident with dementia was represented by a professional guardian. This is in part because high-intensity treatment occurred more frequently than expected among patients without guardians.

End-of-life (EOL) decision making in the intensive care unit (ICU) is challenging for both families and clinicians. This decision-making process is ideally framed around a shared understanding of a patient’s values and goals, all taken in the context of their critical illness and prognosis.

A common perception about Multidisciplinary team (MDT) approach is that it improves quality of care to hospitalized patients, particularly those who are dying. However, there is paucity of information on challenges in implementing such approach in end-of-life care (eolc). The present study explores barriers to MDT functioning in the context of ‘eolc’. Data collected through interviews of physicians, nurses and other staff, and review of case records of deceased patients of a multispecialty hospital in Kolkata (India) suggest that the MDT approach fails to live up to its rhetoric. One of the major challenges is professional boundary that is intrinsic to MDT. Due to this, specialist physicians fail to make consensus end-of-life decisions by overcoming disciplinary boundaries. Moreover, holistic caregiving is compromised in the physician-dominant medical team, where nurses and other non-clinical caregivers feel marginalized. The hospital environment is also not conducive to multidisciplinary teamwork. Application of a disease-specific treatment protocol in ‘eolc’ settings aggravates team coordination. ‘Eolc’ referrals and care transfers becomes very difficult. Dying patients and their families are specially affected by such discordant care. Based on the findings, the study suggests that while team approach is imperative to effective ‘eolc’, there is a need to shift focus from multidisciplinary to transdisciplinary approach to enhance care integration and patient-centric care to terminally ill patients.

Background In pediatric hematopoietic stem cell transplantation (HSCT), the end-of-life (EOL) phase and the loss of the child is often characterized by a sudden deterioration of the child following a period of intensive curative treatment. This demands a fast transition for parents. Therefore, an understanding of the parents' perspective on decision-making in such a complex situation is needed. This study aims to gain insight in parental experiences in EOL decision-making in allogeneic pediatric HSCT. Methods A qualitative descriptive study was performed among parents of eight families. Data were thematically analyzed. Results All parents were aware of their child's deterioration. Six families were confronted with a rapid deterioration, while two families experienced a gradual realization that their child would not survive. Parental EOL decision-making in pediatric HSCT shows a reflective perspective on the meaning of parenthood in EOL decision-making. Two central themes were identified: "survival-oriented decision-making" and "struggling with doubts in hindsight." Six subthemes within the first theme described the parents' goal of doing everything to achieve survival. Discussion Parents experienced EOL decision-making mainly as a process guided by health care professionals (HCPs) based on the child's condition and treatment possibilities. The decision-making is characterized by following opportunities and focusing on hope for cure. In hindsight parents experienced doubts about treatment steps and their child's suffering. HCPs can strengthen the parental role by an early integration of palliative care, providing timely support to parents in the process of imminent loss. Advance care planning can be used to support communication processes, defining preferences for future care.

This chapter brings the rationalist account of decision-making capacity to bear on three case studies. The first concerns a patient who ‘unwisely’ refuses treatment for a condition that can be treated straightforwardly, but which will otherwise be fatal. The second concerns a Jehovah’s Witness who refuses a life-saving blood transfusion. The third concerns an individual suffering from anorexia nervosa, who recognizes that she is dangerously underweight, but who nonetheless refuses to consume food. The author argues that a rationalist approach can accommodate the thought that an individual’s decision-making capacity is not precluded by their making an ‘unwise’ decision. It can also accommodate both the thought that Jehovah’s Witnesses can have decision-making capacity to refuse blood transfusions, and that some sufferers of anorexia nervosa may lack decision-making capacity. The author argues that his account is better equipped to investigate the nuances of these hard cases than the standard account.

Background Austria has recently been embroiled in the complex debate on the legalization of measures to end life prematurely. Empirical data on end-of-life decisions made by Austrian physicians barely exists. This study is the first in Austria aimed at finding out how physicians generally approach and make end-of-life therapy decisions. Methods The European end-of-life decisions (EURELD) questionnaire, translated and adapted by Schildmann et al., was used to conduct this cross-sectional postal survey. Questions on palliative care training, legal issues, and use of and satisfaction with palliative care were added. All Austrian specialists in hematology and oncology, a representative sample of doctors specialized in internal medicine, and a sample of general practitioners, were invited to participate in this anonymous postal survey. Results Five hundred forty-eight questionnaires (response rate: 10.4%) were evaluated. 88.3% of participants had treated a patient who had died in the previous 12 months. 23% of respondents had an additional qualification in palliative medicine. The cause of death in 53.1% of patients was cancer, and 44.8% died at home. In 86.3% of cases, pain relief and / or symptom relief had been intensified. Further treatment had been withheld by 60.0%, and an existing treatment discontinued by 49.1% of respondents. In 5 cases, the respondents had prescribed, provided or administered a drug which had resulted in death. 51.3% of physicians said they would never carry out physician-assisted suicide (PAS), while 30.3% could imagine doing so under certain conditions. 38.5% of respondents supported the current prohibition of PAS, 23.9% opposed it, and 33.2% were undecided. 52.4% of physicians felt the legal situation with respect to measures to end life prematurely was ambiguous. An additional qualification in palliative medicine had no influence on measures taken, or attitudes towards PAS. Conclusions The majority of doctors perform symptom control in terminally ill patients. PAS is frequently requested but rarely carried out. Attending physicians felt the legal situation was ambiguous. Physicians should therefore receive training in current legislation relating to end-of-life choices and medical decisions. The data collected in this survey will help political decision-makers provide the necessary legal framework for end-of-life medical care.

The decision to admit or not admit a patient to the intensive care unit (ICU), thus increasing the intensity of care, should be the result of medical expertise regarding the reversibility of the acute condition that led to the failure of vital organ systems, in accordance with the will of the patient. Since all required information may not be available in the acute situation, nor the certainty of the effectiveness of intensified treatment in the ICU, admission of the patient for a predetermined time period to see any improvement and reversibility may be advisable. This holds especially true for the unknown patient with limited available documentation, seen in an emergency department. Ideally, different scenarios were discussed previously and electively with physicians involved, the patient, and the family. Taking time is important and can be used to collect all required information while also observing the effect of the implemented therapies in the ICU since a patient can die only once. The use of scoring systems for the individual patient to determine indication and prognostication for treatment in an ICU is of limited value.