Advance care planning by proxy in German nursing homes: Descriptive analysis and policy implications.

BACKGROUND: Legally recognized advance directives (ADs) have to be signed by the person to whom the decisions apply. In practice, however, there are also ADs written and signed by legal proxies (surrogates) on behalf of patients who lack decision-making capacity. Given their practical relevance and substantial ethical and legal implications, ADs by proxy (AD-Ps) have received surprisingly little scientific attention so far. OBJECTIVES: To study the form, content, validity, and applicability of AD-Ps among German nursing home residents and develop policy implications. METHODS: Secondary analysis of two independent cross-sectional studies in three German cities, comprising 21 nursing homes and 1528 residents. The identified AD-Ps were analyzed in parallel by three independent raters. Inter-rater agreement was measured using free-marginal multi-rater kappa statistics. RESULTS: Altogether, 46 AD-Ps were identified and pooled for analysis. On average (range), AD-Ps were 1 (1-7) year(s) old, 0.5 (0.25-4) pages long, signed by 1 (0-5) person, with evidence of legal proxy involvement in 35%, and signed by a physician in 20% of cases. Almost all the AD-Ps reviewed aimed to limit life-sustaining treatment (LST), but had widely varying content and ethical justifications, including references to earlier statements (30%) or actual behavior (11%). The most frequent explicit directives were: do-not-hospitalize (67%), do-not-tube-feed (37%), do-not-attempt-resuscitation (20%), and the general exclusion of any LST (28%). Inter-rater agreement was mostly moderate (kappa ≥0.6) or strong (kappa ≥0.8). CONCLUSIONS: Although AD-Ps are an empirical reality in German nursing homes, formal standards for such directives are lacking and their ethical justification based on substituted judgment or best interest standard often remains unclear. A qualified advance care planning process and corresponding documentation are required in order to safeguard the appropriate use of this important instrument and ensure adherence to ethico-legal standards.

Quality of end-of-life communication in 2 high-risk ICU cohorts: a retrospective cohort study.

BACKGROUND: Factors influencing the quality of end-of-life communication are relevant to improving end-of-life care. We assessed the quality of end-of-life communication and influencing factors in 2 intensive care unit (ICU) cohorts at high risk of death: patients living in nursing homes and those on extracorporeal membrane oxygenation (ECMO). METHODS: This retrospective cohort study included admissions to 4 ICUs in Winnipeg, Manitoba, from 2000 to 2017. We identified cohorts and influencing factors from the Winnipeg ICU database and by manual chart review. We assessed quality of end-of-life communication using 18 validated, binary quality indicators to calculate a weighted, scaled, composite score (range 0-100). We used median regression to identify factors associated with the composite score. RESULTS: The ECMO cohort (n = 109) was younger than the nursing home cohort (n = 230), with longer hospital stays and higher disease severity. Mean composite scores of end-of-life communication were extremely low in both cohorts (mean 48.5 [standard error of the mean (SEM) 1.7] for the nursing home cohort, 49.1 [SEM 2.5] for the ECMO cohort). Patient characteristics associated with higher median composite scores were older age (5.0 per decade, 95% confidence interval [CI] 2.1-7.8) and lower (worse) Glasgow Coma Scale (GCS) scores (1.8 per GCS point, 95% CI 0.5-3.2). The median composite score rose significantly over time (1.7 per year, 95% CI 0.5-2.8). INTERPRETATION: The quality of end-of-life communication in ICUs is poor, and factors associated with better prognosis are also associated with worse communication. Direct and early communication should occur with all patients in the ICU and their surrogates, not just those who are believed most likely to die.

In This Together: Navigating Ethical Challenges Posed by Family Clustering during the Covid-19 Pandemic.

Harrowing stories reported in the media describe Covid-19 ravaging through families. This essay reports professional experiences of this phenomenon, family clustering, as encountered during the pandemic's spread across Southern California. We identify three ethical challenges following from it: Family clustering impedes shared decision-making by reducing available surrogate decision-makers for incapacitated patients, increases the emotional burdens of surrogate decision-makers, and exacerbates health disparities for and the suffering of people of color at increased likelihood of experiencing family clustering. We propose that, in response to these challenges, efforts in advance care planning be expanded, emotional support offered to surrogates and family members be increased, more robust state guidance be issued on ethical decision-making for unrepresented patients, ethics consultation be increased in the setting of conflict following from family clustering dynamics, and health care professionals pay more attention to systemic and personal racial biases and inequities that affect patient care and the surrogate experience.

Cognitively Impaired Older Persons' and Caregivers' Perspectives on Dementia-Specific Advance Care Planning.

BACKGROUND/OBJECTIVES: Advance care planning (ACP) traditionally involves asking individuals about their treatment preferences during a brief period of incapacity near the end of life. Because dementia leads to prolonged incapacity, with many decisions arising before a terminal event, it has been suggested that dementia-specific ACP is necessary. We sought to elicit the perspectives of older adults with early cognitive impairment and their caregivers on traditional and dementia-specific ACP. DESIGN: Qualitative study with separate focus groups for patients and caregivers. SETTING: Memory disorder clinics. PARTICIPANTS: Twenty eight persons aged 65+ with mild cognitive impairment or early dementia and 19 caregivers. MEASUREMENTS: Understanding of dementia trajectory and types of planning done; how medical decisions would be made in the future; thoughts about these decisions. RESULTS: No participants had engaged in any written form of dementia-specific planning. Barriers to dementia-specific ACP emerged, including lack of knowledge about the expected trajectory of dementia and potential medical decisions, the need to stay focused in the present because of fear of loss of self, disinterest in planning because the patient will not be aware of decisions, and the expectation that involved family members would take care of issues. Some patients had trouble engaging in the discussion. Patients had highly variable views on what the quality of their future life would be and on the leeway their surrogates should have in decision making. CONCLUSIONS: Even among patients with early cognitive impairment seen in specialty clinics and their caregivers, most were unaware of the decisions they could face, and there were many barriers to planning for these decisions. These issues would likely be magnified in more representative populations, and highlight challenges to the use of dementia-specific advance directive documents.

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.

The Japan Geriatrics Society consensus statement "recommendations for older persons to receive the best medical and long-term care during the COVID-19 outbreak-considering the timing of advance care planning implementation".

Since the end of 2019, a life-threatening infectious disease (coronavirus disease 2019: COVID-19) has spread globally, and numerous victims have been reported. In particular, older persons tend to suffer more severely when infected with a novel coronavirus (SARS-CoV-2) and have higher case mortality rates; additionally, outbreaks frequently occur in hospitals and long-term care facilities where most of the residents are older persons. Unfortunately, it has been stated that the COVID-19 pandemic has caused a medical collapse in some countries, resulting in the depletion of medical resources, such as ventilators, and triage based on chronological age. Furthermore, as some COVID-19 cases show a rapid deterioration of clinical symptoms and accordingly, the medical and long-term care staff cannot always confirm the patient's values and wishes in time, we are very concerned as to whether older patients are receiving the medical and long-term care services that they wish for. It was once again recognized that it is vital to implement advance care planning as early as possible before suffering from COVID-19. To this end, in August 2020, the Japan Geriatrics Society announced ethical recommendations for medical and long-term care for older persons and emphasized the importance of conducting advance care planning at earlier stages. Geriatr Gerontol Int 2020; 20: 1112-1119.

Prevalence of palliative sedation in the State of São Paulo: an emerging medical demand.

OBJECTIVE: To investigate the prevalence of palliative sedation use and related factors. METHODS: An observational study based on data collected via electronic questionnaire comprising 23 close-ended questions and sent to physicians living and working in the state of São Paulo. Demographic data, prevalence and frequency of palliative sedation use, participant's familiarity with the practice and related motivating factors were analyzed. In order to minimize memory bias, questions addressing use frequency and motivating factors were limited to the last year prior to survey completion date. Descriptive statistics were used to summarize data. RESULTS: In total, 20,168 e-mails were sent and 324 valid answers obtained, resulting in 2% adherence. The overall prevalence of palliative sedation use over the course of professional practice was 68%. However, only 48% of respondents reported having used palliative sedation during the last year, primarily to relieve pain (35%). The frequency of use ranged from one to six times (66%) during the study period and the main reason for not using was the lack of eligible patients (64%). Approximately 83% of physicians felt comfortable using palliative sedation but only 26% reported having specific academic training in this field. CONCLUSION: The prevalence of palliative sedation use is high, the primary indication being pain relief. However, frequency of use is low due to lack of eligible patients.

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.

Planificación compartida de la atención: la COVID-19, ¿una oportunidad? / Shared care planning: COVID-19, is it an opportunity?

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[Current ethical challenges in intensive care in the face of the corona pandemic]. / Aktuelle ethische Herausforderungen in der Intensivmedizin angesichts der Corona-Pandemie.

In view of dramatically increasing patient numbers worldwide in the face of the corona pandemic and scarce resources in intensive care medicine in many countries, some of which are dramatically undersupplied, concerns and fears have spread among the population in Germany. Healthcare workers didn't know how to deal with an overload of the healthcare system. Numerous inquiries from concerned physicians as well as ethics committees prompted the German Interdisciplinary Association for Intensive Care and Emergency Medicine (DIVI) together with seven other medical associations to work out a clinical-ethical recommendation on "Decisions on resource allocation in emergency and intensive care in the context of the COVID-19 pandemic".

Caring for Frail Older Adults During COVID-19: Integrating Public Health Ethics into Clinical Practice.

During the coronavirus disease 2019 (COVID-19) pandemic, principles from both clinical and public health ethics cue clinicians and healthcare 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 article will explore the COVID-19 Ethical Decision Making Framework, published in British Columbia (BC), Canada, to familiarize clinicians and policy makers with how ethical principles can guide systems change, in the service of frail older adults. In BC, the healthcare 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. J Am Geriatr Soc 68:1666-1670, 2020.

Scarce-Resource Allocation and Patient Triage During the COVID-19 Pandemic: JACC Review Topic of the Week.

The COVID-19 pandemic and its sequelae have created scenarios of scarce medical resources, leading to the prospect that health care systems have faced or will face difficult decisions about triage, allocation, and reallocation. These decisions should be guided by ethical principles and values, should not be made before crisis standards have been declared by authorities, and, in most cases, will not be made by bedside clinicians. Do not attempt resuscitation and withholding and withdrawing decisions should be made according to standard determination of medical appropriateness and futility, but there are unique considerations during a pandemic. Transparent and clear communication is crucial, coupled with dedication to provide the best possible care to patients, including palliative care. As medical knowledge about COVID-19 grows, more will be known about prognostic factors that can guide these difficult decisions.

Reducing Discrepancy Between Code Status Orders and Physician Orders for Life-Sustaining Therapies: Results of a Quality Improvement Initiative.

BACKGROUND: Advanced care planning through Physician Order For Life-Sustaining Therapies (POLST) has been encouraged by professional societies. But these documents may be overlooked or ignored during hospitalization and "full-code" orders written as a default, putting patients at risk for unwanted resuscitation. After 2 instances of unwanted resuscitation in which limited support POLSTs were ignored, a series of improvements were implemented. This study measured the effectiveness of those steps in reducing POLST code status discrepancy. METHODS: Pre-post implementation chart review of randomly chosen medical admissions to determine the rate of discordance between POLST orders (when present) and admission code status orders. Physician Order For Life-Sustaining Therapies were classified as either "full" or "limited" based on orders for life-sustaining therapies on the form. Chi-square tests or Fisher exact tests were performed on binary data to identify statistically significant differences at the 95% confidence level between pre- and postimplementation admissions. RESULTS: In all, 444 preimplementation and 448 postimplementation admissions were evaluated. Discrepant code status orders for those with limited POLST fell from 10 (22.7%) of 44 preimplementation to 3 (4.6%) of 65 after implementation, P = .006. The number of documented code status discussions in admission notes increased from 19.6% to 63.6% (P < .001). The median age of all POLST in the chart was 1.2 years. CONCLUSIONS: Among those patients with limited POLST orders, discrepant full-code orders increase the potential for unwanted resuscitation. Multistep improvements including documentation templates improved the process of verifying end-of-life wishes and increased meaningful code status discussions. The rate of discrepant orders fell in response to process improvements.

Palliative care for people living with heart failure: European Association for Palliative Care Task Force expert position statement.

Contrary to common perception, modern palliative care (PC) is applicable to all people with an incurable disease, not only cancer. PC is appropriate at every stage of disease progression, when PC needs emerge. These needs can be of physical, emotional, social, or spiritual nature. This document encourages the use of validated assessment tools to recognize such needs and ascertain efficacy of management. PC interventions should be provided alongside cardiologic management. Treating breathlessness is more effective, when cardiologic management is supported by PC interventions. Treating other symptoms like pain or depression requires predominantly PC interventions. Advance Care Planning aims to ensure that the future treatment and care the person receives is concordant with their personal values and goals, even after losing decision-making capacity. It should include also disease specific aspects, such as modification of implantable device activity at the end of life. The Whole Person Care concept describes the inseparability of the physical, emotional, and spiritual dimensions of the human being. Addressing psychological and spiritual needs, together with medical treatment, maintains personal integrity and promotes emotional healing. Most PC concerns can be addressed by the usual care team, supported by a PC specialist if needed. During dying, the persons' needs may change dynamically and intensive PC is often required. Following the death of a person, bereavement services benefit loved ones. The authors conclude that the inclusion of PC within the regular clinical framework for people with heart failure results in a substantial improvement in quality of life as well as comfort and dignity whilst dying.

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.