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The American Society for Parenteral and Enteral Nutrition (ASPEN) Position Paper focus is on applying the 4 ethical principles for clinician's decision-making in the use of artificially administered nutrition and hydration (AANH) for adult and pediatric patients. These basic principles are (1) autonomy, respect the patient's healthcare preferences; (2) beneficence, provide healthcare in the best interest of the patient; (3) nonmaleficence, do no harm; and (4) justice, provide all individuals a fair and appropriate distribution of healthcare resources. Preventing and resolving ethical dilemmas is addressed, with an emphasis on a collaborative, interdisciplinary approach. Optimizing early communication and promoting advance care planning, involving completion of an advance directive, including designation of a surrogate decision-maker, are encouraged. Clinicians achieve respect for autonomy when they incorporate the patient, family, community, country, geographical, and presumed cultural values and religious belief considerations into ethical decision-making for adults and children with a shared decision-making process. These discussions should be guided by the 4 ethical principles. Hospital committees and teams, limited-time trials, clinician obligation with conflicts, and forgoing of AANH are addressed. Specific patient conditions are addressed because of the concern for potential ethical issues: coma, decreased consciousness, and dementia; advanced dementia; cancer; eating disorders; and end-stage disease/terminal illness. Incorporated in the Position Paper are ethical decisions during a pandemic and a legal summary involving ethical issues. International authors presented the similarities and differences within their own country or region and compared them with the US perspective.

Background Advance care planning (ACP) is a process of reflection on and communication of a person's future health-care preferences. Evidence suggests visible minorities engage less in ACP. The South Asian ethnic group is the largest visible minority group in Canada, and information is needed to understand how ACP is perceived and how best to approach ACP within this diverse community. Objective To explore perspectives of South Asian community members towards ACP. Design Peer-to-peer inquiry. South Asian community members who graduated from the Patient and Community Engagement Research programme (PaCER) at the University of Calgary utilized the PaCER method (SET, COLLECT and REFLECT) to conduct a focus group, family interviews and a community forum. Setting and participants Fifty-seven community-dwelling men and women (22-86 years) who self-identified with the South Asian community in Calgary, Alberta, Canada. Results The concept of ACP was mostly foreign to this community and was often associated with other end-of-life issues such as organ donation and estate planning. Cultural aspects (e.g. trust in shared family decision making and taboos related to discussing death), religious beliefs (e.g. fatalism) and immigration challenges (e.g. essential priorities) emerged as barriers to participation in ACP. However, participants were eager to learn about ACP and recommended several engagement strategies (e.g. disseminate information through religious institutions and community centres, include families in ACP discussions, encourage family physicians to initiate discussions and translate materials). Conclusions Use of a patient engagement research model proved highly successful in understanding South Asian community members' participation in ACP.

Background Early engagement in advance care planning (ACP) is seen as fundamental for ensuring the highest standard of care for children and young people with a life-limiting condition (LLC). However, most families have little knowledge or experience of ACP. Objective To investigate how parents of children and young people with LLCs approach and experience ACP. Methods Open-ended, semi-structured interviews were conducted with parents of 18 children; nine children who were currently receiving palliative care services, and nine children who had received palliative care and died. Verbatim transcripts of audiotaped interviews were analysed following principles of grounded theory while acknowledging the use of deductive strategies, taking account of both the child’s condition, and the timing and nature of decisions made. Results Parents reported having discussions and making decisions about the place of care, place of death and the limitation of treatment. Most decisions were made relatively late in the illness and by parents who wished to keep their options open. Parents reported different levels of involvement in a range of decisions; many wished to be involved in decision making but did not always feel able to do so. Discussion This study highlights that parents’ approaches to decision making vary by the type of decision required. Their views may change over time, and it is important to allow them to keep their options open. We recommend that clinicians have regular discussions over the course of the illness in an effort to understand parents’ approaches to particular decisions rather than to drive to closure prematurely.

BackgroundDespite the recognized importance of end-of-life (EOL) communication between patients and physicians, the extent and quality of such communication is lacking.ObjectiveWe sought to understand patient perspectives on physician behaviours during EOL communication.DesignIn this mixed methods study, we conducted quantitative and qualitative strands and then merged data sets during a mixed methods analysis phase. In the quantitative strand, we used the quality of communication tool (QOC) to measure physician behaviours that predict global rating of satisfaction in EOL communication skills, while in the qualitative strand we conducted semi-structured interviews. During the mixed methods analysis, we compared and contrasted qualitative and quantitative data.Setting and ParticipantsSeriously ill inpatients at three tertiary care hospitals in Canada.ResultsWe found convergence between qualitative and quantitative strands: patients desire candid information from their physician and a sense of familiarity. The quantitative results (n = 132) suggest a paucity of certain EOL communication behaviours in this seriously ill population with a limited prognosis. The qualitative findings (n = 16) suggest that at times, physicians did not engage in EOL communication despite patient readiness, while sometimes this may represent an appropriate deferral after assessment of a patient's lack of readiness.ConclusionsAvoidance of certain EOL topics may not always be a failure if it is a result of an assessment of lack of patient readiness. This has implications for future tool development: a measure could be built in to assess whether physician behaviours align with patient readiness.

Background Although shared decision making (SDM) is the preferred model of making complex treatment decisions with patients, patients' and doctors' attitudes towards SDM for advance care planning are unknown. Objective We sought to: (i) gain general insights into the current practice of SDM and attitudes about patient involvement, and (ii) gain specific insights into experience with, and attitudes about, SDM for advance care planning. Design Qualitative analysis of face-to-face semi-structured interviews. Setting and participants Patients with chronic lung disease and their doctors at a New York City public hospital. Results Although patients described participation in decision making, many deferred the final decision to their doctors. Doctors indicated a preference for SDM but expressed barriers including perceived lack of patient understanding and lack of patient empowerment. With regard to end-of-life discussions, patients were generally open to having these discussions with their doctors, although their openness sometimes depended on the circumstance (i.e. end-of-life discussions may be more acceptable to patients for whom the chance of dying is high). Doctors reported engaging in end-of-life treatment decisions with their patients, although expressed the need for conversations to take place earlier, in advance of acute illness, and identified a lack of prognostic estimates as one barrier to engaging in this discussion. Conclusions Doctors should explore their patients' attitudes regarding end-of-life discussions and preferences for decision-making styles. There is a need for tools such as decision aids which can empower patients to participate in decision making and can support doctors with prognostic estimates pertinent to individual patients.

In the latter half of the 20th century, Western medicine moved death from the home to the hospital. As a result, the process of dying seems to have lost its spiritual dimension, and become a matter of prolonging material life by means of medical technology. The novel quandaries that arose led in turn to medico-legal regulation. This paper describes the recent regulation of dying in Israel under its Dying Patient Law, 2005. The Law recognizes advance directives in principle, but limits their effect and form through complex medico-legal artifices. It reflects a culture that places high value on both scientific medicine and the sanctity of life as such, and illustrates a medical culture that pitches battle against death. At the same time, the Law constructs the will of the individual in a medico-legal language that is alien to the lay person. The paper suggests an alternative approach to advance care planning that is patient-centred and addresses the psycho-social needs of the individual in terms of her relational autonomy. From this perspective, advance care planning becomes an opportunity to extract the patient from the medical context and allow her to speak about her approaching death with close ones in her own terms of reference. To this end, there is a need for facilitation of an intimate encounter where patients can speak about their concerns with their loved ones. The paper also presents a methodological approach of attentive listening, which can be applied across diverse cultures and circumstances.

Advance care planning is considered an important issue in end-of-life care for older adults. The ongoing COVID-19 pandemic has interrupted the healthcare system and end-of-life care tremendously. This review aimed to explore available articles on advance care planning amid the pandemic and analyze qualitatively. PubMed and Google Scholar were searched on February 2021 using the relevant keywords. Retrieved articles were screened applying inclusion criteria. Any article describing advance care planning during the COVID-19 era was included. A qualitative content analysis was conducted. In total, 20 articles incorporating 5542 participants from five countries were included. Among the articles, eight were primary studies and the rest were perspective papers or secondary analysis. From the qualitative content analysis six major themes emerged namely palliative care, lack of coordination among acute care, hospital palliative care, and long-term care, community-based advance care planning, real-time dissemination of scientific information on the regional pandemic situation, online system and legislation. The COVID-19 pandemic had decreased the uptake of advance care planning. Findings of the review suggested simplification of the procedure regarding advance care planning, implementation of community-based advance care planning and utilization of online resources to enhance the process. Geriatr Gerontol Int 2021; 21: 779-787.

During the COVID‐19 pandemic, principles from both clinical and public health ethics cue clinicians and health care administrators to plan alternatives for frail older adults who prefer to avoid critical care, and for when critical care is not available due to crisis triaging. This paper will explore the COVID‐19 Ethical Decision Making Framework, published in British Columbia, Canada, to familiarize clinicians and policy makers with how ethical principles can guide systems change, in the service of frail older adults. In British Columbia, the health care system has launched resources to support clinicians in proactive advance care planning discussions, and is providing enhanced supportive and palliative care options to residents of long term care facilities. If the pandemic truly overwhelms the healthcare system, frailty, but not age alone, provides a fair and evidence‐based means of triaging patients for critical care and could be included into ventilator allocation frameworks. This article is protected by copyright. All rights reserved.

Objective The objective of this paper is to explore the ethical and legal validity of advance directives that request the voluntary stopping of eating and drinking against a backdrop of late-stage dementia. Method Doctrinal research and analysis of primary and secondary materials including Australian legislation, Australian case law and journal articles was undertaken. Results There is legal uncertainty in Australia around whether an advance directive to voluntarily stop eating and drinking will be followed should the adult become incompetent. Conclusion Voluntary stopping of eating and drinking should be viewed in law as a form of "treatment" that competent adults can nominate in advance directives, thereby providing dementia patients with the opportunity to choose in advance, if they wish, to end their life legally, with dignity and comfort, and in a manner that does not implicate others in criminal behaviour such as assisted suicide, acceleration of death or euthanasia.

The novel Coronavirus disease 2019 (COVID‐19) outbreak has led to rapid and profound changes in healthcare system delivery and society more broadly. Older adults, and those living with chronic or life‐limiting conditions, are at increased risk of experiencing severe or critical symptoms associated with COVID‐19 infection and are more likely to die. They may also experience non‐COVID‐19 related deterioration in their health status during this period. Advance care planning (ACP) is critical for this cohort, yet there is no coordinated strategy for increasing the low rates of ACP uptake in these groups, or more broadly. This paper outlines a number of key reasons why ACP is an urgent priority, and should form a part of the health system's COVID‐19 response strategy. These include reducing the need for rationing, planning for surges in healthcare demand, respecting human rights, enabling proactive care coordination and leveraging societal change. We conclude with key recommendations for policy and practice in the system‐wide implementation of ACP, to enable a more ethical, coordinated and person‐centred response in the COVID‐19 context.

Aim To examine lesbian, gay, bisexual and transgender (LGBT) people's attitudes to advance care planning (ACP) options and alternative decision-making at the end of life. Method Three hundred and five LGBT people completed an online or paper-based questionnaire, comprising fixed-choice questions and open-ended questions. Results Most respondents, particularly those identifying as female or transgender, preferred a partner to be their alternative decision-maker at the end of life should the need arise. Fifty-two per cent of respondents had spoken to this person about their wishes. Regarding legal options enabling end-of-life decision-making, 29% had an enduring power of attorney, 18% an enduring guardian and 12% an advance care directive. Conclusion Despite the significance of ACP for promoting the rights of LGBT people at the end of life, the take-up of these options was nearly as low as for the general population. The potential for targeted strategies to increase the take-up of ACP is identified.

BACKGROUND AND PURPOSE:\ud The European Association of Palliative Care Taskforce, in collaboration with the Scientific Panel on Palliative Care in Neurology of the European Federation of Neurological Societies (now the European Academy of Neurology), aimed to undertake a review of the literature to establish an evidence-based consensus for palliative and end of life care for patients with progressive neurological disease, and their families.\ud METHODS:\ud A search of the literature yielded 942 articles on this area. These were reviewed by two investigators to determine the main areas and the subsections. A draft list of papers supporting the evidence for each area was circulated to the other authors in an iterative process leading to the agreed recommendations.\ud RESULTS:\ud Overall there is limited evidence to support the recommendations but there is increasing evidence that palliative care and a multidisciplinary approach to care do lead to improved symptoms (Level B) and quality of life of patients and their families (Level C). The main areas in which consensus was found and recommendations could be made are in the early integration of palliative care (Level C), involvement of the wider multidisciplinary team (Level B), communication with patients and families including advance care planning (Level C), symptom management (Level B), end of life care (Level C), carer support and training (Level C), and education for all professionals involved in the care of these patients and families (Good Practice Point).\ud CONCLUSIONS:\ud The care of patients with progressive neurological disease and their families continues to improve and develop. There is a pressing need for increased collaboration between neurology and palliative care.

As a society and as individuals, we have come to recognize ourselves as 'death-denying', a self-characterisation particularly prominent in palliative care discourse and practice. As part of a larger project examining death attitudes in the palliative care setting, a Medline search (1971 to 2001) was performed combining the text words 'deny' and 'denial' with the subject headings 'terminal care', 'palliative care' and 'hospice care'. The 30 articles were analysed using a constant comparison technique and emerging themes regarding the meaning and usage of the words deny and denial were identified. This paper examines the theme of denial as an obstacle to palliative care. In the articles, denial was described as an impediment to open discussion of dying, dying at home, stopping 'futile' treatments, advance care planning and control of symptoms. I suggest that these components of care together constitute what has come to be perceived as a correct 'way to die'. Indeed, the very conceptualisation of denial as an obstacle to these components of care has been integral to building and sustaining the 'way to die' itself. The personal struggle with mortality has become an important instrument in the public problem of managing the dying process.

Psychology as a profession has entered the arena of palliative and hospice care later in the process than other health care professions. Through the use of Familial Advance Planning Evaluations (FAPEs), however, psychologists can assist individuals and families in facing end-of-life transitions in important ways. Hospice and palliative care philosophy treats the patient and family as the unit of care. End-of-life decision-making is therefore a family matter as well as a normative developmental transition. Yet, little is known about the decision-making process. This paper reviews the literature regarding informed consent, advance care planning, and proxy decision-making and outlines a theoretical model for familial decision-making. Previous models of end-of-life capacity evaluations and family assessments are presented and serve as the basis for a comprehensive assessment of familial decision-making at the end of life. Functional capacity evaluations of individuals at the end of life regarding decisions about life-sustaining medical treatments enable both the individual patient and one identified proxy from his or her family to discuss important issues families may face during medical crises at the end of life. The information gleaned from such evaluations has the potential to assist psychologists and other professionals in designing family-specific interventions to reduce caregiving distress, improve quality of life for dying patients, and ease the transition to bereavement for caregivers.