A Collaborative educational intervention to improve pre-clinical medical student confidence with Advance Care Planning (ACP).

BACKGROUND: Advance care planning (ACP) is an essential skill for clinicians, yet trainees feel inadequately prepared to conduct ACP discussions. Optimal teaching methods and timing are unknown. AIM: We designed a curricular intervention to expose second-year medical students to the process of ACP, aiming to improve their ACP knowledge and confidence. DESIGN: The intervention consisted of a case-based workshop facilitated by a physician experienced in ACP ("facilitated ACP workshop"), which was added to an existing multifaceted ACP curriculum (longitudinal senior mentor program including multiple visits with a volunteer older adult, completion of an electronic ACP learning module and reflective writing exercise). The control group received the existing ACP curriculum only, while the intervention group received the existing curriculum plus the facilitated ACP workshop. Both groups completed an ACP knowledge assessment and confidence survey at the conclusion of the curriculum. SETTING/PARTICIPANTS: Two consecutive classes of second year medical students, single academic hospital. RESULTS: No statistically significant differences in ACP knowledge or confidence were seen post-intervention. Overall confidence with ACP tasks remained relatively low despite a multifaceted ACP curriculum. CONCLUSIONS: Future studies should investigate longitudinal, experiential ACP learning, and seek to optimize ACP teaching strategies and timing.

Advance care planning in medicare/medicaid-funded agencies: providing a training in cultural competence.

This study presents a training that was developed for staff members at Medicare/Medicaid agencies to improve their knowledge and comfort levels in working on advance care planning (ACP) with their clients in a culturally competent manner. The training was developed to address the need to clarify the different types and purposes of ACP and to help develop the skills needed to work with clients of diverse cultural backgrounds. The evaluation of findings from the training showed the positive impacts that it had on participants; in particular, they exhibited demonstrated improvement in their knowledge of and comfort levels with ACP. The participants also expressed interest in receiving continued training surrounding ACP to increase their cultural competency skills and to receive updated information on ACP policies and practices.

Advance care planning in Australia during the COVID-19 outbreak: now more important than ever.

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.

Advance Healthcare Directives: Binding or Informational Value?

Advance directives entail a refusal expressed by a still-healthy patient. Three consequences stem from that fact: (a) advance refusal is unspecific, since it is impossible to predict what the patient's conditions and the risk-benefit ratio may be in the foreseeable future; (b) those decisions cannot be as well informed as those formulated while the disease is in progress; (c) while both current consent and refusal can be revoked as the disease unfolds, until the treatment starts out, advance directives become effective when the patient becomes incapable or unconscious; such decisions can therefore not be revoked at any stage of the disease. Therefore, advance directives are binding for doctors only at the stage of advance treatment planning, i.e., only if they refer to an illness already in progress.

The Underappreciated Role of Advance Directives: How the Pandemic Revitalises Advance Care Planning Actions.

Covid-19 continues to alter our way of living and dying. Much attention has focused on how to resolve pressing issues surrounding resource allocation and competing public health ethics. While these are important discussions, the legal and ethical dilemmas of treatment decisions remain highly critical. The urgency to ensure that life and death affairs are in order is magnified due to the possibility of becoming infected with Covid-19. However, many people continue to face challenges in organising their future medical care and treatment. This article explores how the pandemic affects advance care planning through the lenses of law and ethics. The range of Covid-19 implications on advance care planning demonstrates a paradigm shift from a primarily elective function to an essential role in healthcare delivery. This renewed appreciation to advance care planning offers the opportunity to support and sustain the important role that it could play during ordinary and extraordinary times.

Advance decisions in dementia: when the past conflicts with the present.

As the prevalence of dementia increases across the Western world, there is a growing interest in advance care planning, by which patients may make decisions on behalf of their future selves. Under which ethical principles is this practice justified? I assess the justification for advance care planning put forward by the philosopher Ronald Dworkin, which he rationalises through an integrity-based conception of autonomy. I suggest his judgement is misguided by arguing in favour of two claims. First, that patients with dementia qualify for some right to contemporary autonomy conceptualised under the 'sense of liberty' it provides. Second, that respecting precedent autonomy, such as an advance care plan, is not essential to Dworkin's integrity-based account of autonomy. Together, my claims problematise the practice of using advance decisions in the context of dementia.

Truth-telling and doctor-assisted death as perceived by Israeli physicians.

BACKGROUND: Medicine has undergone substantial changes in the way medical dilemmas are being dealt with. Here we explore the attitude of Israeli physicians to two debatable dilemmas: disclosing the full truth to patients about a poor medical prognosis, and assisting terminally ill patients in ending their lives. METHODS: Attitudes towards medico-ethical dilemmas were examined through a nationwide online survey conducted among members of the Israeli Medical Association, yielding 2926 responses. RESULTS: Close to 60% of the respondents supported doctor-assisted death, while one third rejected it. Half of the respondents opposed disclosure of the full truth about a poor medical prognosis, and the others supported it. Support for truth-telling was higher among younger physicians, and support for doctor-assisted death was higher among females and among physicians practicing in hospitals. One quarter of respondents supported both truth-telling and assisted death, thereby exhibiting respect for patients' autonomy. This approach characterizes younger doctors and is less frequent among general practitioners. Another quarter of the respondents rejected truth-telling, yet supported assisted death, thereby manifesting compassionate pragmatism. This was associated with medical education, being more frequent among doctors educated in Israel, than those educated abroad. All this suggests that both personal attributes and professional experience affect attitudes of physicians to ethical questions. CONCLUSIONS: Examination of attitudes to two debatable medical dilemmas allowed portrayal of the multi-faceted medico-ethical scene in Israel. Moreover, this study, demonstrates that one can probe the ethical atmosphere of a given medical community, at various time points by using a few carefully selected questions.

Advance care planning for frail older people in China: A discussion paper.

As the aging population, including frail older people, continues to grow in Mainland China, quality of life and end-of-life care for frail older people has attracted much attention. Advance care planning is an effective way to improve end-of-life care for people with advanced diseases, and it is widely used in developed countries; however, it is a new concept in Mainland China. The effects of advance care planning and its acceptability in Mainland China are uncertain because of its culture-sensitive characteristics. The objective of this article is to discuss the serious social issue of caring for frail older people and illustrate the possibility of implementing advance care planning in nursing homes in Mainland China through a review of relevant literature, which will focus on legislation, healthcare system engagement, public engagement, and cultural issues. Recommendations to promote and implement advance care planning include choosing nursing homes as a proper setting, establishing an ethical climate, and enhancing public awareness.

Advance care planning for older people: The influence of ethnicity, religiosity, spirituality and health literacy.

In this discussion paper we consider the influence of ethnicity, religiosity, spirituality and health literacy on Advance Care Planning for older people. Older people from cultural and ethnic minorities have low access to palliative or end-of-life care and there is poor uptake of advance care planning by this group across a number of countries where advance care planning is promoted. For many, religiosity, spirituality and health literacy are significant factors that influence how they make end-of-life decisions. Health literacy issues have been identified as one of the main reasons for a communication gaps between physicians and their patients in discussing end-of-life care, where poor health literacy, particularly specific difficulty with written and oral communication often limits their understanding of clinical terms such as diagnoses and prognoses. This then contributes to health inequalities given it impacts on their ability to use their moral agency to make appropriate decisions about end-of-life care and complete their Advance Care Plans. Currently, strategies to promote advance care planning seem to overlook engagement with religious communities. Consequently, policy makers, nurses, medical professions, social workers and even educators continue to shape advance care planning programmes within the context of a medical model. The ethical principle of justice is a useful approach to responding to inequities and to promote older peoples' ability to enact moral agency in making such decisions.

The interactive effect of advanced cancer patient and caregiver prognostic understanding on patients' completion of Do Not Resuscitate orders.

OBJECTIVE: Advanced cancer patients' prognostic understanding is associated with completion of Do Not Resuscitate (DNR) orders, which often represent engagement in advance care planning (ACP). Given caregivers' critical roles in patient decision-making about ACP and end-of-life care, caregivers' prognostic understanding may have a large additive effect. The present study examined the association between the main and interactive effects of advanced cancer patient and caregiver prognostic understanding on DNR order completion. METHODS: Data were analyzed from a combined dataset of 2 sequential multi-institutional, longitudinal cohort studies of patients with advanced cancer and their informal caregivers (n = 279 dyads) from 2002 to 2008 (Coping with Cancer 1) and 2010 to 2015 (Coping with Cancer 2). Patients' and caregivers' prognostic understanding regarding life-expectancy (≤ 12 months [prognostic understanding], >12 months [lack of prognostic understanding]) was assessed. DNR order completion was assessed through self-report and confirmed through cross-checking with medical records. RESULTS: Multivariable modeling of the main and interactive effects revealed the interactive effect, but not the individual effects, of patients' and caregivers' prognostic understanding was significantly associated with higher odds of patients' DNR order completion, adjusting for potential confounds (AOR = 5.89, P = 0.04). For dyads in which both the patient and caregiver had prognostic understanding regarding life expectancy of ≤12 months, 70.7% of patients had completed DNR orders compared with 31.6% to 38.9% in which 1 or both lacked prognostic understanding. CONCLUSIONS: Findings highlight the need for ensuring accurate patient and caregiver prognostic understanding in increasing DNR order completion, which may provide a framework for improving engagement in ACP more broadly.

Resuscitation decisions at the end of life: medical views and the juridification of practice.

BACKGROUND: Concerns about decision making related to resuscitation have led to two important challenges in the courts resulting in new legal precedents for decision-making practice. Systematic research investigating the experiences of doctors involved in decisions about resuscitation in light of the recent changes in law remains lacking. AIM: To analyse the practice of resuscitation decision making on hospital wards from the perspectives of doctors. DESIGN: The data presented in this paper were collected as part of a wider research study of end-of-life care in an acute hospital setting. Data collection comprised ethnographic non-participant observation on two acute hospital wards and individual interviews with patients, relatives and healthcare professionals caring for patients thought to be approaching the end of life. Data were analysed using a constructivist grounded theory approach. RESULTS: Discussions and decision making about resuscitation present many challenges for those involved on acute medical wards. The data highlight the potential for multiple interpretations of legal precedents, creating misunderstandings that may impact patient care in less positive ways. CONCLUSIONS: This paper provides unique insights into how doctors respond to the changing medico-legal culture and the subsequent effects on patient care. It demonstrates how the juridification of medical practice can occur. It highlights the potential benefit of a structure to support clinicians, patients and relatives in discussing and navigating decisions around care at the end of life in line with the patient's wishes and preferences. Recommendations for future research are made and legal ramifications are discussed.

Best interest versus advance decisions to refuse treatment in advance care planning for neurodegenerative illness.

This article describes the role of nurses assisting people with degenerative illness in advance care planning (ACP) for a time when they may lose decision-making capacity. It looks at the concept of advance decisions to refuse treatment (ADRT), as defined in the Mental Capacity Act 2005 , exploring the legal, ethical and philosophical ramifications of carrying out, or overriding, formerly expressed wishes of someone who has subsequently lost decision-making capacity. It uses an illustrative composite case study of an individual with Huntington's disease whose prognosis includes future deterioration in swallowing, together with consideration of whether to have or refuse a percutaneous endoscopic gastrostomy. The author, who as part of his role cares for people with neurodegenerative conditions, including Huntington's disease, discusses the difficulties and dilemmas that nurses experience with ADRTs, drawing on personal experience. He suggests that, rather than focusing on ADRTs, ACP may be most effective in preparing people and their surrogates to make real-time decisions, based on a shared understanding of the individual's values.

[Dementia from a palliative care perspective: why a disease-specific advance care planning is necessary]. / Demenz aus palliativmedizinischer Perspektive: warum ein krankheitsspezifisches Advance Care Planning wichtig ist.

Dementia from a palliative care perspective: why a disease-specific advance care planning is necessary Abstract. Palliative Care has to transform profoundly in the context of population aging in many countries around the globe. It has to collaborate increasingly with geriatric medicine and incorporate geriatric expertise. One of the pivotal challenges of geriatric palliative care is ethically appropriate decision making for patients who have lost decision-making capacity. While the traditional approach to advance directives (living wills) has demonstrably proven ineffective, the new approach that is currently being embraced, including in German-speaking countries, is the systemic process of advance care planning (ACP). In this article, ACP is first presented with its general aims, elements and effects. Second, it is shown why we need an adapted ACP program for people with dementia and what such a dementia-specific ACP must entail.

Palliative care for children with a yet undiagnosed syndrome.

The number of children without a diagnosis in pediatric palliative home care and the process of decision-making in these children are widely unknown. The study was conducted as single-center retrospective cohort study. Between January 2013 and September 2016, 198 children and young adults were cared for; 27 (13.6%) of these were without a clear diagnosis at the start of pediatric palliative home care. A definite diagnosis was ultimately achieved in three children. Median age was 7 years (0-25), duration of care 569 days (2-2638), and number of home visits 7.5 (2-46). Most patients are still alive (19; 70.4%). Median number of drugs administered was eight (range 2-19); antiepileptics were given most frequently. Despite the lack of a clear diagnosis (and thus prognosis), 13 (48.1%) parents faced with their critically ill and clinically deteriorating children decided in favor of a DNAR order. Comparing this with 15 brain-injured children, signs, symptoms, and supportive needs were similar in both groups. CONCLUSION: Children without a clear diagnosis are relatively common in pediatric palliative care and have-like all other patients-the right to receive optimized and symptom-adapted palliative care. Parents are less likely to choose treatment limitation for children who lack a definitive diagnosis. What is Known: • A clear diagnosis is usually considered important for best-practice pediatric palliative care (PPC) including advanced care planning (ACP). • Timely initiation of pediatric palliative care (PPC) is highly recommended in children with life-limiting conditions. What is New: • SWAN (syndrome without a name) children show similar signs and symptoms (mostly neurological) and have similar supportive needs as brain-injured children. • Defining treatment limitations in advance care planning is more difficult for parents of SWAN compared to brain-injured children.

The role of law in decisions to withhold and withdraw life-sustaining treatment from adults who lack capacity: a cross-sectional study.

OBJECTIVES: To determine the role played by law in medical specialists' decision-making about withholding and withdrawing life-sustaining treatment from adults who lack capacity, and the extent to which legal knowledge affects whether law is followed. DESIGN: Cross-sectional postal survey of medical specialists. SETTING: The two largest Australian states by population. PARTICIPANTS: 649 medical specialists from seven specialties most likely to be involved in end-of-life decision-making in the acute setting. MAIN OUTCOME MEASURES: Compliance with law and the impact of legal knowledge on compliance. RESULTS: 649 medical specialists (of 2104 potential participants) completed the survey (response rate 31%). Responses to a hypothetical scenario found a potential low rate of legal compliance, 32% (95% CI 28% to 36%). Knowledge of the law and legal compliance were associated: within compliers, 86% (95% CI 83% to 91%) had specific knowledge of the relevant aspect of the law, compared with 60% (95% CI 55% to 65%) within non-compliers. However, the reasons medical specialists gave for making decisions did not vary according to legal knowledge. CONCLUSIONS: Medical specialists prioritise patient-related clinical factors over law when confronted with a scenario where legal compliance is inconsistent with what they believe is clinically indicated. Although legally knowledgeable specialists were more likely to comply with the law, compliance in the scenario was not motivated by an intention to follow law. Ethical considerations (which are different from, but often align with, law) are suggested as a more important influence in clinical decision-making. More education and training of doctors is needed to demonstrate the role, relevance and utility of law in end-of-life care.

The role of informal caregivers at the end of life: providing support through Advance Care Planning.

In the palliative phase of a person's illness, the needs of the patient and informal caregivers are paramount. Caregivers often look to palliative care practitioners for support, guidance and emotional comfort. This article reviews the role of the informal caregiver at the end of life, summarising their concerns and needs. The paper also highlights caregiver difficulties in making the coping transition when the patient's medical condition becomes advanced and they require end-of-life care. The focus of the review is placed on discussions about Advanced Care Planning (ACP). ACP is a complex legal, ethical and practical issue that can enable caregivers to consider future strategies and enable them to provide high quality care at the end of life. The paper looks at some of the ethical and legal issues associated with this sensitive end-of-life issue.

Giving Voice to the Voiceless: The Colorado Response to Unrepresented Patients.

Medical decision making on behalf of unrepresented patients is one of the most challenging ethical issues faced in clinical practice. The legal environment surrounding these patients is equally complex. This article describes the efforts of a small coalition of interested healthcare professionals to address the issue in Colorado. A brief history of the effort is presented, along with discussion of the legal, ethical, practical, and political dimensions that arose in Colorado's effort to address decision making for unrepresented patients through an extension of the existing Colorado Medical Treatment Decision Act (CRS 15-18). A discussion of lessons learned in the process is included.

The PoET (Prevention of Error-Based Transfers) Project.

The PoET (Prevention of Error-based Transfers) Project is one of the Ethics Quality Improvement Projects (EQIPs) taking place at William Osler Health System. This specific project is designed to reduce transfers from long-term care to hospital that are caused by legal and ethical errors related to consent, capacity and substitute decision-making. The project is currently operating in eight long-term care homes in the Central West Local Health Integration Network and has seen a 56% reduction in multiple transfers before death in hospital.

[From the Advance Directives to the Advance Care Planning]. / De las instrucciones previas a la planifi cación anticipada de la asistencia sanitaria.

In the last decade we have witnessed a significant legislative transformation with regard to the death and dignity process, and respect the decision of the people in this framework. In that way, different legislation at regional level in our country have been articulated to ensure the right of patients to produce documents of advanced directives or living will. This fact has highlighted the need not only to legal regulation, but a deep change in the pattern of relationship between health professional and patient. Advance planning of healthcare (PAAS) represents an important step in respect for patient autonomy and the desire to involve the person in the decision making process, in matters relating to his own death. This process is developed in order to find solutions to ensure the autonomy and freedom of those who, from a given moment, have lost the ability to make decisions. In this model of care, the role of nursing is not only necessary but essential.

Does the use of specialist palliative care services modify the effect of socioeconomic status on place of death? A systematic review.

BACKGROUND: Cancer patients in lower socioeconomic groups are significantly less likely to die at home and experience more barriers to access to palliative care. It is unclear whether receiving palliative care may mediate the effect of socioeconomic status on place of death. AIM: This review examines whether and how use of specialist palliative care may modify the effect of socioeconomic status on place of death. DESIGN: A systematic review was conducted. Eligible papers were selected and the quality appraised by two independent reviewers. Data were synthesised using a narrative approach. DATA SOURCES: MEDLINE, Embase, CINAHL, PsycINFO and Web of Knowledge were searched (1997-2013). Bibliographies were scanned and experts contacted. Papers were included if they reported the effect of both socioeconomic status and use of specialist palliative care on place of death for adult cancer patients. RESULTS: Nine studies were included. All study subjects had received specialist palliative care. With regard to place of death, socioeconomic status was found to have (1) no effect in seven studies and (2) an effect in one study. Furthermore, one study found that the effect of socioeconomic status on place of death was only significant when patients received standard specialist palliative care. When patients received more intense care adapted to their needs, the effect of socioeconomic status on place of death was no longer seen. CONCLUSION: There is some evidence to suggest that use of specialist palliative care may modify the effect of socioeconomic status on place of death.