End-of-Life Preferences: A Randomized Trial of Framing Comfort Care as Refusal of Treatment in the Context of COVID-19.

BACKGROUND: Rates of advance directive (AD) completion in the United Kingdom are lower than in the United States and other western European countries, which is especially concerning in light of the COVID-19 pandemic. UK residents typically complete an advance decision to refuse care (ADRT), whereas US versions of ADs present a more neutral choice between comfort-oriented or life-prolonging care. The purpose of this study is to test whether this framing affects decision making for end-of-life care and if this is affected by exposure to information about the COVID-19 pandemic. METHODS: In an online experiment, 801 UK-based respondents were randomly allocated to document their preferences for end-of-life care in a 2 (US AD or UK ADRT) by 2 (presence or absence of COVID-19 prime) between-subjects factorial design. RESULTS: Most (74.8%) of participants across all conditions chose comfort-oriented care. However, framing comfort care as a refusal of treatment made respondents significantly less likely to choose it (65.4% v. 84.1%, P < 0.001). This effect was exacerbated by priming participants to think about COVID-19: those completing an ADRT were significantly more likely to choose life-prolonging care when exposed to the COVID-19 prime (39.8% v. 29.6%, P = 0.032). Subgroup analyses revealed these effects differed by age, with older participants' choices influenced more by COVID-19 while younger participants were more affected by the AD framing. CONCLUSIONS: The UK ADRT significantly reduced the proportion of participants choosing comfort-oriented care, an effect that was heightened in the presence of information about COVID-19. This suggests the current way end-of-life care wishes are documented in the United Kingdom could affect people's choices in a way that does not align with their preferences, especially in the context of the COVID-19 pandemic. HIGHLIGHTS: Participants completing an AD framed as an advance decision to refuse treatment were significantly less likely to choose comfort-oriented care than participants completing an AD with a neutral choice between comfort-oriented and life-prolonging care.Exposure to a COVID-19 prime had an interactive effect on documented preferences in the refusal of treatment condition, with these participants even less likely to choose comfort-oriented care.Policy makers and organizations that design templates for advance care planning, particularly in the time of the COVID-19 pandemic, should be aware how the framing of these forms can influence decisions.

Standardized High-Quality Processes for End-of-Life-Decision Making in the Intensive Care Unit Remain Robust during an Unprecedented New Pandemic-A Single-Center Experience.

Due to the global COVID-19 pandemic, a concomitant increase in awareness for end-of-life decisions (EOLDs) and advance care planning has been noted. Whether the dynamic pandemic situation impacted EOLD-processes on the intensive care unit (ICU) and patient-sided advance care planning in Germany is unknown. This is a retrospective analysis of all deceased patients of surgical ICUs of a university medical center from March 2020 to July 2021. All included ICUs had established standardized protocols and documentation for EOLD-related aspects of ICU therapy. The frequency of EOLDs and advance directives and the process of EOLDs were analyzed (No. of ethical approval EA2/308/20). A total number of 319 (85.5%) of all deceased patients received an EOLD. Advance directives were possessed by 83 (22.3%) of the patients and a precautionary power of attorney by 92 (24.7%) of the patients. There was no difference in the frequency of EOLDs and patient-sided advance care planning between patients with COVID-19 and non-COVID-19 patients. In addition, no differences in frequencies of do-not-resuscitate orders, withholding or withdrawing of intensive care medicine therapeutic approaches, timing of EOLDs, and participation of senior ICU attendings in EOLDs were noted between patients with COVID-19 and non-COVID-19 patients. Documentation of family conferences occurred more often in deceased patients with COVID-19 compared to non-COVID-19 patients (COVID-19: 80.0% vs. non-COVID-19: 56.8, p = 0.001). Frequency of EOLDs and completion rates of advance directives remained unchanged during the pandemic compared to pre-pandemic years. The EOLD process did not differ between patients with COVID-19 and non-COVID-19 patients. Institutional standard procedures might contribute to support the robustness of EOLD-making processes during unprecedented medical emergencies, such as new pandemic diseases.

Utilization of Palliative Care Screening Tool to Early Identify Patients with COVID-19 Needing Palliative Care: A Cohort Study.

There are very few programs that identify patients with coronavirus disease 2019 (COVID-19) who need palliative care. This cohort study presents a model to use a validated palliative care screening tool (PCST) to systematically identify hospitalized patients with COVID-19 in need of palliative care. In this prospective study, we consecutively recruited patients with COVID-19 admitted to Taipei City Hospital between 1 January and 30 July 2021. Patients' palliative care needs were determined by using the PCST. Advance care planning (ACP) and advance directives (AD) were systemically provided for all patients with a PCST score ≥ 4. Of 897 patients, 6.1% had a PCST score ≥ 4. During the follow-up period, 106 patients died: 75 (8.9%) with a PCST score < 4 and 31 (56.4%) with a PCST score ≥ 4. The incidence of mortality was 2.08 and 0.58/100 person-days in patients with PCST scores ≥ 4 and <4, respectively. After controlling for other covariates, a PCST score ≥ 4 was associated with a higher risk of mortality in patients with COVID-19 (adjusted HR = 2.08; 95% CI: 1.22-3.54; p < 0.001). During hospitalization, 55 patients completed an ACP discussion with their physicians, which led to 15 of them completing the AD. Since hospitalized patients with COVID-19 had a high mortality rate, it is imperative to implement a comprehensive palliative care program to early identify patients needing palliative care and promotion of AD and ACP.

Multidisciplinary Clinicians and the Relational Autonomy of Persons with Neurodegenerative Disorders and an Advance Care Plan: A Thematic Analysis.

INTRODUCTION: People diagnosed with neurodegenerative disorders often grapple with threats to their agency, prompting some to engage in advance care planning. Advance care plans are intended to protect autonomy by helping patients receive goal-consistent healthcare. Accordingly, there is a need to better understand factors associated with hospital doctors' application of advance care plans to treatment decisions of this patient cohort. PURPOSE: The purpose of this study was to explain the recommendations of multidisciplinary hospital-based clinicians about the benefits of advance care plans for people diagnosed with neurodegenerative disorders, and the elements that influence how doctors apply such plans. MATERIALS AND METHODS: Using a constructivist grounded theory informed thematic analysis, semi-structured interviews were conducted with purposively and theoretical sampled hospital-based clinicians: 16 doctors, six registered nurses and 10 allied health clinicians who self-reported having experience delivering healthcare to people with neurodegenerative disorders and an advance care plan. Allied health and nurse data helped to inform questions posed to doctors. Data were inductively analysed using open and focused coding. RESULTS: Analysis revealed two main themes: recommending agency through advance care plans; and limiting agency through advance care plans. These themes formed the basis of the core category: patient agency. All clinicians held positive attitudes towards advance care plans as a means to preserve patient voices and alleviate family of responsibility. However, the extent to which doctors shared decisions with family revealed a tension between individualistic agency associated with advance care plans and relational autonomy perceived by doctors as appropriate. CONCLUSION: Although doctors expressed positive attitudes towards advance care plans, they typically practiced relational autonomy wherein they partner with family in contemporaneous healthcare decision on patients' behalf. Accordingly, the healthcare preferences of hospitalised, incompetent people with neurodegenerative disorders are balanced against judgements of both doctors and family.

Consensus Report on Destination Therapy in Japan　- From the DT Committee of the Council for Clinical Use of Ventricular Assist Device Related Academic Societies.

Destination therapy (DT) is the indication to implant a left ventricular assist device (LVAD) in a patient with stage D heart failure who is not a candidate for heart transplantation. The implantable LVAD has been utilized in Japan since 2011 under the indication of bridge to transplant (BTT). After almost 10 year lag, DT has finally been approved and reimbursed in May 2021 in Japan. To initiate the DT program in Japan, revision of the LVAD indication from BTT is necessary. Also, in-depth discussion of caregiver issues as well as end-of-life care is indispensable. For that purpose, we assembled a DT committee of multidisciplinary members in August 2020, and started monthly discussions via web-based communication during the COVID-19 pandemic. This is a summary of the consensus reached after 6 months' discussion, and we have included as many relevant topics as possible. Clinical application of DT has just started, and we are willing to revise this consensus to meet the forthcoming issues raised during real-world clinical experience.

Advance Care Plans and the Potentially Conflicting Interests of Bedside Patient Agents: A Thematic Analysis.

AIM: People diagnosed with a neurodegenerative disorder often contend with a threat to independence and control, leading some to complete an advance care plan. Advance care plans are commonly associated with treatment limitations; however, key patient agents (such as doctors, allied health, nurses and family) may instead make temporal, best interests or good medical practice decisions on behalf of the patient. Accordingly, there is a need to better understand ancillary decision-maker's perspectives, particularly of doctors. PURPOSE: To explain how the potentially conflicting interests of bedside patient agents operates as a factor which influences doctors' application of advance care plans of people with a neurodegenerative disorder. PARTICIPANTS AND METHODS: Using a constructivist grounded theory informed thematic analysis, 38 semi-structured interviews were conducted with hospital-based doctors, allied health, nurses and family of people with a neurodegenerative disorder who had an advance care plan. Data were inductively analysed using open and focused coding. RESULTS: Analysis revealed two main themes: dynamics of discerning best interests; and avoiding conflict. Rather than applying advance care plans, doctors largely involved families to attempt best interests decision-making partnerships on patients' behalf. Bedside agents demonstrated significant intra and interpersonal challenges associated with their roles as patient agents. Doctors appeared protective of families and patients with neurodegenerative disorder. CONCLUSION: Although bedside agents value advance care plans, doctors often favour temporal healthcare decisions in consultation with family. We suggest there are limitations to the effectiveness of advance care plans in practice, with application typically only occurring close to death. Despite the intentions of advance care planning, bedside agents may still experience considerable dissonance.

The Role Complexities in Advance Care Planning for End-of-Life Care-Nursing Students' Perception of the Nursing Profession.

Nurses' perceptions of being responsible for advance care planning (ACP) vary greatly across different studies. It could, however, affect their involvement in advance care planning and patients' quality of death. Recent studies on this topic have mostly focused on advance directives but not ACP and nurses in the ward setting. This study aimed to assess the perception of Hong Kong nursing undergraduates of the nurse's role in advance care planning and examine its associations with knowledge, attitude, and experience. A cross-sectional 57-item survey was delivered to nursing undergraduates between June and August 2020. The chi-squared test or Fisher's exact test were used for univariate analysis. The multiple logistic regression model was used for multivariate analysis. A total of 469 participants were assessed for eligibility; 242 of them were included in the data analysis, with a response rate of 97.6%. The majority of respondents-77.3% (95% CI: 72.0-82.6%)-perceived having a role in ACP, but large discrepancies were found between their perception of their role regarding different aspects of ACP. Participants who had a better knowledge status (p = 0.029) or supported the use of ACP (p < 0.001) were more likely to have a positive perception of their role in ACP. A negative correlation was found between the experience of life threat and positive role perception (p < 0.001). Through strengthening training, the role clarity of nursing undergraduates could be achieved, maximizing their cooperation with and implementation of ACP in their future nursing career. The enhancement of end-of-life education could also be undertaken to fill nursing undergraduates' knowledge gap in this area and change their attitudes.

Perceptions of the Importance of Advance Care Planning During the COVID-19 Pandemic Among Older Adults Living With HIV.

Background: The importance of advance care planning (ACP) discussions have been heightened during the COVID-19 pandemic. We assessed advance directive completion, healthcare proxy (HCP), and attitudes toward ACP among older adults ages 50+ living with HIV during the COVID-19 pandemic. Methods: Internet-based surveys were administered to 100 participants residing in the Coachella Valley, California from April to June 2020. We examined self-reported completion of an advance directive, HCP, and attitudes toward ACP before and after COVID-19. Adjusted regressions were performed on attitudes toward ACP. Results: Participants' mean age was 64.2 years, most were non-Hispanic white (88.0%), men (96.0%), and identified as sexual minorities (96.0%). Many reported having an advance directive (59.6%) or HCP (67.3%). Most (57.6%) believed ACP to be more important now compared to the pre-pandemic era. Having an advance directive was associated with increase in age, higher education, living with other people, never having an AIDS diagnosis, and current undetectable viral load (p < 0.05). Having a HCP was associated with higher education, being married/partnered, and living with other people (p < 0.05). In a logistic regression model adjusted for education and living situation, the belief that ACP was more important during COVID was associated with not having an advance directive (OR: 5.07, 95% CI: 1.78-14.40) and fear of COVID-19 infection (OR: 4.17, 95% CI: 1.61-10.76.) Conclusions: The COVID-19 pandemic presents a window of opportunity to engage people aging with HIV in ACP discussions, particularly those who do not already have an advance directive.

Hearts above water: Palliative care during a pandemic.

Social workers and nurses, as members of interprofessional palliative medicine teams, faced unfamiliar challenges and opportunities as they endeavored to provide humanistic care to patients and families during the coronavirus (COVID-19) pandemic. Typical methods for engaging patients and families in medical decision-making became thwarted by visitation restrictions and patients' dramatic health declines. This paper presents an innovative social work and nursing intervention aimed at enhancing humanistic patient/family care and advanced directive dialogs. Through incorporating a narrative synthesis of the teams' reflective journals from COVID-19, the paper chronicles the intervention implementation, patient/family responses, and team members' personal and professional meaning-making processes.

Chronic and Sudden Serious Illness, COVID-19, and Decision-Making Capacity: Integrating Advance Care Planning Into the Preoperative Checklist for Elective Surgery.

Advance Care Planning (ACP) includes anticipating future medical decisions and designating a medical decision maker in the event of losing the capacity to make one's own medical decisions. Many advantages can be seen to doing ACP before a crisis as well as revisiting these discussions over time as circumstances change. This case presentation is of a 74-year-old woman with multiple medical problems who had ACP discussions in the context of proposed surgery for colon cancer. These conversations highlight the elements of high-quality ACP and the importance of learning what patients mean when they employ phrases commonly referenced in these conversations. The planned surgery was delayed by the COVID-19 pandemic but the discussions helped to guide decision-making when the patient became critically ill with COVID-19.