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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.

The Heart Failure Association of the European Society of Cardiology has published a previous position paper and various guidelines over the past decade recognizing the value of palliative care for those affected by this burdensome condition. Integrating palliative care into evidence-based heart failure management remains challenging for many professionals, as it includes the identification of palliative care needs, symptom control, adjustment of drug and device therapy, advance care planning, family and informal caregiver support, and trying to ensure a good death. This new position paper aims to provide day-to-day practical clinical guidance on these topics, supporting the coordinated provision of palliation strategies as goals of care fluctuate along the heart failure disease trajectory. The specific components of palliative care for symptom alleviation, spiritual and psychosocial support, and the appropriate modification of guideline-directed treatment protocols, including drug deprescription and device deactivation, are described for the chronic, crisis and terminal phases of heart failure. Funding Agencies|Patient Forum of the European Society of Cardiology

Survival prospects in adults with congenital heart disease (CHD), although improved in recent decades, still remain below expectations for the general population. Patients and their loved ones benefit from preparation for both unexpected and predictable deaths, sometimes preceded by a prolonged period of declining health. Hence, advance care planning (ACP) is an integral part of comprehensive care for adults with CHD. This position paper summarizes evidence regarding benefits of and patients' preferences for ACP and provides practical advice regarding the implementation of ACP processes within clinical adult CHD practice. We suggest that ACP be delivered as a structured process across different stages, with content dependent upon the anticipated disease progression. We acknowledge potential barriers to initiate ACP discussions and emphasize the importance of a sensitive and situation-specific communication style. Conclusions presented in this article reflect agreed expert opinions and include both patient and provider perspectives. ispartof: EUROPEAN HEART JOURNAL vol:41 issue:43 pages:4200-4210 ispartof: location:England status: published

Background Advance care planning (ACP) aids can help prepare patients, family members, and physicians for in-the-moment medical decision-making. We wished to describe the content and approach of paper-based ACP aids in order to characterize existing aids and inform the development of a new ACP aid. Methods Paper-based ACP aids were identified through an environmental scan and screened for eligibility. ACP conceptual frameworks and data were gathered via stakeholder engagement and used to inform the coding framework that two investigators used to independently code each aid. A directed content analysis was conducted on these eligible aids. Aids were categorized through a deliberative process with an investigator abstracting general information for each aid. Results Fifteen aids met the eligibility criteria. They ranged in length from 6 to 78 pages with the average aid written at an eighth-grade reading level. The content analysis revealed that many aids encouraged choosing a surrogate decision maker and informed users about legal medical documents. Fewer than half of the aids facilitated patient clarification of values regarding quality of life issues. The authors identified and termed the following three categories of aids: informative; semi-action oriented; and action-oriented. It was often unclear whether patients contributed to the development or testing of the ACP aids reviewed. Conclusions Most existing paper-based ACP aids address legal matters such as completing an advance directive. Only a minority elicited patient values and it was unclear whether any were developed in partnership with patients. Future development of ACP aids should account for patient preferences with a goal of supporting in-the-moment medical decision-making.

This paper reports the findings from a study to investigate health care professionals&rsquo, views regarding the use and acceptability of two similar paper-based advance care planning (ACP) documents designed for older adults in their last year of life to inform end-of-life care provision. Participants&rsquo, views of using PEACE (Proactive Elderly Persons Advisory Care), a nurse led model with community geriatrician oversight, and PACe (proactive anticipatory care plan), a general practitioner (GP) led model implemented by two clinical commissioning groups (CCGs) as part of a wider pilot to determine their ability to improve end-of-life care provision, were explored. Hospital admission avoidance matrons took part in face to face interviews and care staff employed in private residential care homes took part in individual telephone interviews to explore their views of using the PEACE tool. Telephone interviews were conducted with GPs to explore their views of PACe. GPs and admission avoidance matrons were employed by CCGs and all study participants were recruited from the South East of England, where data collection took place in 2015. The data were analysed thematically. Findings from the study demonstrate how both tools provide a focus to ACP discussions to inform individual end-of-life care preferences. The importance of relationships was a pivotal theme established, trusting inter-professional relationships to enable multidisciplinary teamwork and a prior relationship with the older person (or their proxy in the case of cognitive impairment) to enable such conversations in the first place. Both tools enabled participants to think critically and reflect on their own practice. Notwithstanding participants&rsquo, views to improve their layout, using a paper-based approach to deliver streamlined ACP and end-of-life care was a theme to emerge as a potential barrier, and highlighted problems with accessing paper-based documentation, accuracy and care co-ordination in the context of multidisciplinary team working. The value of technology in overcoming this barrier and underpinning ACP as a means to help simplify service provision, promote integrated professional practice and provide seamless care, was put forward as a way forward.

s / Biol Blood Marrow Transplant 21 (2015) S114eS126 S124 Sarah Thirlwell , Kim Amtmann-Buettner . 1 BMT, Moffitt Cancer Center, Tampa, FL; 2 Professional Nursing Development, Moffitt Cancer Center, Tampa, FL; 3 Inpatient BMT, Moffitt Cancer Center, Tampa, FL; 4 Supportive Care Medicine, Moffitt Cancer Center, Tampa, FL; 5 Patient and Family Services, Moffitt Cancer Center, Tampa, FL Topic Significance & Study Purpose/Background/Rationale: BMT nurses deliver the treatments that can lead to patient and family acute and chronic suffering, and sometimes death, for the hope of cure and control of disease. In 2010, staff of our BMT Unit began demonstrating severe compassion fatigue (CF) with an increase in moral distress, nurse turnover rate, medical leave usage, conflict among staff, patients and families, and increased requests to Psychosocial Care for debriefing. Nursing Leadership, in partnership with other disciplines, recognized the need to address CF and create a plan to alleviate burnout and to increase nurses’ resiliency. Methods, Intervention, & Analysis: In 2011, the ProQOL5 survey, a valid CF assessment tool, was distributed to inpatient BMT nurses. The nurse manager then partnered with staff, Organizational Development, Social Work, Chaplaincy and Supportive Care Medicine to identify strategies to decrease CF among inpatient BMT nurses. A strategic plan was implemented to provide education about CF, to offer debriefing support, to hold skill-building sessions for resiliency and stress reduction techniques, to promote quality end-of-life care, and to improve workflow to promote selfcare. After implementation of the interventions, the ProQOL5 survey was repeated in 2013. Findings & Interpretation: Comparison of the results of the ProQOL5 surveys from 2011 to 2013 revealed improvement in the survey sub-domains of Compassion Satisfaction, Burnout, and Secondary Trauma. The result suggests that, when compared to standard compassion fatigue scores, BMT inpatient nurses experience slightly above average compassion satisfaction, low burnout as opposed to average burnout, and a low level of secondary trauma. Discussion & Implications: BMT nurses can experience severe compassion fatigue as a result of the care they deliver on a daily basis. A strategic and multimodal approach to alleviate CF can have a positive impact. Although the survey results did show improvement from 2011 to 2013, compassion fatigue is an ongoing concern for BMT nurses. Next steps include creation of a staff respite room on the BMT unit and the formation of a Code Lavender Team.

Contains fulltext : 232493.pdf (Publisher’s version ) (Open Access) BACKGROUND: The acute nature of COVID-19 and its effects on society in terms of social distancing and quarantine regulations affect the provision of palliative care for people with dementia who live in long-term care facilities. The current COVID-19 pandemic poses a challenge to nursing staff, who are in a key position to provide high-quality palliative care for people with dementia and their families. OBJECTIVE: To formulate practice recommendations for nursing staff with regard to providing palliative dementia care in times of COVID-19. DESIGN AND METHOD: A rapid scoping review following guidelines from the Joanna Briggs Institute. Eligible papers focused on COVID-19 in combination with palliative care for older people or people with dementia and informed practical nursing recommendations for long-term care facilities. After data extraction, we formulated recommendations covering essential domains in palliative care adapted from the National Consensus Project's Clinical Practice Guidelines for Quality Palliative Care. DATA SOURCES: We searched the bibliographic databases of PubMed, CINAHL and PsycINFO for academic publications. We searched for grey literature using the search engine Google. Moreover, we included relevant letters and editorials, guidelines, web articles and policy papers published by knowledge and professional institutes or associations in dementia and palliative care. RESULTS: In total, 23 documents (7 (special) articles in peer-reviewed journals, 6 guides, 4 letters to editors, 2 web articles (blogs), 2 reports, a correspondence paper and a position paper) were included. The highest number of papers informed recommendations under the domains 'advance care planning' and 'psychological aspects of care'. The lowest number of papers informed the domains 'ethical care', 'care of the dying', 'spiritual care' and 'bereavement care'. We found no papers that informed the 'cultural aspects of care' domain. CONCLUSION: Literature that focuses specifically on palliative care for people with dementia in long-term care facilities during the COVID-19 pandemic is still largely lacking. Particular challenges that need addressing involve care of the dying and the bereaved, and ethical, cultural and spiritual aspects of care. Moreover, we must acknowledge grief and moral distress among nursing staff. Nursing leadership is needed to safeguard the quality of care and nursing staff should work together within an interprofessional care team to initiate advance care planning conversations in a timely manner, to review and document advance care plans, and to adapt goals of care as they may change due to the COVID-19 situation. Tweetable abstract: The current COVID-19 pandemic affects people living with dementia, their families and their professional caregivers. This rapid scoping review searched for academic and grey literature to formulate practical recommendations for nursing staff working in long-term care facilities on how to provide palliative care for people with dementia in times of COVID-19. There is a particular need for grief and bereavement support and we must acknowledge grief and moral distress among nursing staff. This review exposes practice and knowledge gaps in the response to COVID-19 that reflect the longstanding neglect and weaknesses of palliative care in the long-term care sector. Nursing leadership is needed to safeguard the quality of palliative care, interprofessional collaboration and peer support among nursing staff.

Background Cystic fibrosis (CF) is a life-limiting genetic disease that causes chronic lung infections. We developed an internet-based decision aid (DA) to help patients with CF make better informed decisions regarding treatments and advance care planning. We built the DA around two major treatment decisions: whether to have a lung transplant and whether to agree to invasive mechanical ventilation (intubation). Objective This study aims to conduct usability testing of the InformedChoices CF DA among key stakeholder groups. Methods We performed a patient needs assessment using think-aloud usability testing with patients with CF, their surrogates, and CF clinicians. Think-aloud participants provided feedback while navigating the DA, and after viewing, they answered surveys. Transcripts from the think-aloud sessions and survey results were categorized into common, generalizable themes and optimizations for improving content, comprehension, and navigation. We assessed the ease of use of the DA (System Usability Scale) and also assessed the participants’ perceptions regarding the overall tone, with an emphasis on emotional reactions to the DA content, level of detail, and usefulness of the information for making decisions about either intubation or lung transplantation, including how well they understood the information and were able to apply it to their own decision-making process. We also assessed the DA’s ease of navigation, esthetics, and whether participants were able to complete a series of usability tasks (eg, locating specific information in the DA or using the interactive survival estimates calculator) to ensure that the website was easy to navigate during the clinic-based advance care planning discussions. Results A total of 12 participants from 3 sites were enrolled from March 9 to August 30, 2018, for the usability testing: 5 CF clinicians (mean age 48.2, SD 12.0 years), 5 adults with CF, and 2 family and surrogate caregivers of people with CF (mean age of CF adults and family and surrogate caregivers 38.8, SD 10.8 years). Among the 12 participants, the average System Usability Scale score for the DA was 88.33 (excellent). Think-aloud analysis identified 3 themes: functionality, visibility and navigation, and content and usefulness. Areas for improvement included reducing repetition, enhancing comprehension, and changing the flow. Several changes to improve the content and usefulness of the DA were recommended, including adding information about alternatives to childbearing, such as adoption and surrogacy. On the basis of survey responses, we found that the navigation of the site was easy for clinicians, patients, and surrogates who participated in usability testing. Conclusions Usability testing revealed areas of potential improvement. Testing also yielded positive feedback, suggesting the DA’s future success. Integrating changes before implementation should improve the DA’s comprehension, navigation, and usefulness and lead to greater adoption.

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 Advance care planning is the process of discussing health care treatment preferences based on patients’ personal values, and it often involves the completion of advance directives. In the first months of 2020, a novel coronavirus, severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), began circulating widely in the American state of Colorado, leading to widespread diagnosis of coronavirus disease (COVID-19), hospitalizations, and deaths. In this context, the importance of technology-based, non–face-to-face methods to conduct advance care planning via patient portals has increased. Objective The aim of this study was to determine the rates of use of a web-based advance care planning tool through a health system–based electronic patient portal both before and in the early months of the COVID-19 pandemic. Methods In 2017, we implemented web-based tools through the patient portal of UCHealth’s electronic health record (EHR) for patients to learn about advance care planning and complete an electronically signed medical durable power of attorney (MDPOA) to legally appoint a medical decision maker. Patients accessing the portal can complete and submit a legally valid MDPOA, which becomes part of their medical record. We collected data on the patients’ date of MDPOA completion, use of advance care planning messaging, age, sex, and geographic location during the early phase of the COVID-19 pandemic (December 29, 2019, to May 30, 2020). Results Over a 5-month period that includes the early phase of the COVID-19 pandemic in Colorado, total monthly use of the advance care planning portal tool increased from 418 users in January to 1037 users in April and then decreased slightly to 815 users in May. The number of MDPOA forms submitted per week increased 2.4-fold after the stay-at-home order was issued in Colorado on March 26, 2020 (P Conclusions Use of a web-based patient portal to complete an MDPOA increased substantially during the first months of the COVID-19 pandemic in Colorado. There was an increase in advance care planning that corresponded with state government shelter-in-place orders as well as public health reports of increased numbers of COVID-19 cases and deaths. Patient portals are an important tool for providing advance care planning resources and documenting medical decision makers during the pandemic to ensure that medical treatment aligns with patient goals and values.

Introduction: Advanced care planning (ACP) is a voluntary process of discussion about future care between an individual and their care provider. ACP is a key focus of national policy as a means to improve patient centered care at the end-of-life. Despite wide held belief that ACP is beneficial, uptake is sporadic with considerable variation depending on age, ethnicity, location and disease group. Methods: This study looked to establish the prevalence of ACP on initial presentation to hospital with a medical emergency within The Society of Acute Medicine Benchmarking Audit (SAMBA'18). 123 acute hospitals from across the UK collected data during a day of care survey. The presence of ACP and the presence of 'Do Not Attempt Cardiopulmonary Resuscitation' orders were recorded separately. Results: Among 6072 patients presenting with an acute medical emergency, 290 patients (4.8%) had an ACP that was available for the admitting medical team. The prevalence of ACP was higher at 12.6% for patients over 90 years old. Comparing the effect of location for older patients showed that for patients over 90 years old, 25.3% of patients in institutional care had ACP whereas 8.7% of patients admitted from home had ACP. However, in patients above the age of 90 who were being re-admitted after a hospital admission within the previous 30 days, just 15.3% had evidence of ACP. Conclusion: Very few patients have an ACP that is available to admitting medical teams during an unscheduled hospital admission. Even among patients with advanced age, and who have recently been in hospital, the prevalence of available ACP remains low, in spite of national guidance. Further interventions are needed to ensure that patients' wishes for care are known by providers of acute medical care. Funding Statement: The authors stated that: This study was unfunded." Declaration of Interests: No conflicts of interest declared by the authors. Ethics Approval Statement: The authors declared that ethics committee approval was not required for this study.

// Jessica I. Hoell 1 , Hannah L. Weber 1 , Stefan Balzer 1 , Mareike Danneberg 1 , Gabriele Gagnon 1 , Laura Trocan 1 , Arndt Borkhardt 1 , Gisela Jansen 1 and Michaela Kuhlen 1 1 University of Duesseldorf, Medical Faculty, Department of Pediatric Oncology, Hematology and Clinical Immunology, Center for Child and Adolescent Health, Duesseldorf, Germany Correspondence to: Michaela Kuhlen, email: Michaela.Kuhlen@med.uni-duesseldorf.de Keywords: terminal care; advance care planning (ACP); pediatric palliative care; palliative medicine; medical orders for life-sustaining treatment (MOLST) Received: February 15, 2018 Accepted: March 08, 2018 Published: April 03, 2018 ABSTRACT Pediatric advance care planning seeks to ensure end-of-life care conforming to the patients/their families' preferences. To expand our knowledge of advance care planning and “medical orders for life-sustaining treatment” (MOLST) in pediatric palliative home care, we determined the number of patients with MOLST, compared MOLST between the four “Together for Short Lives” (TfSL) groups and analyzed, whether there was a relationship between the content of the MOLST and the patients’ places of death. The study was conducted as a single-center retrospective analysis of all patients of a large specialized pediatric palliative home care team (01/2013-09/2016). MOLST were available in 179/198 children (90.4%). Most parents decided fast on MOLST, 99 (55.3%) at initiation of pediatric palliative home care, 150 (83.4%) within the first 100 days. MOLST were only changed in 7.8%. Eighty/179 (44.7%) patients decided on a Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR) order, 58 (32.4%) on treatment limitations of some kind and 41 (22.9%) wished for the entire spectrum of life-sustaining measures (Full Code). Most TfSL group 1 families wanted DNACPR and most TfSL group 3/4 parents Full Code. The majority (84.9%) of all DNACPR patients died at home/hospice. Conversely, all Full Code patients died in hospital (80% in an intensive care setting). The circumstances of the childrens’ deaths can therefore be predicted considering the content of the MOLST. Regular advance care planning discussions are thus a very important aspect of pediatric palliative home care.

Since the concept of the living wills emerged nearly 50 years ago, there have been practical challenges in translating the concept of an advance directive (AD) into documents that are clinically useful across various healthcare settings and among different patient populations and cultures. Especially, challenging has been the reliance in most ADs on pre-selected “choices” about specific interventions which either revolve around broad themes (e.g., “prolong life / do not prolong life”) or whether or not to utilize particular interventions (e.g., CPR, mechanical ventilation), both of which about most laypersons know little and, more importantly, lacking context, prove to be of limited meaningfulness. Moreover, whether by foundational frame, decade-long misunderstanding in medicine and bioethics, or different societal customs, these ADs present decision-making responsibility for initiating, continuing, or withdrawing medical interventions as a patient responsibility—creating a burden for which most patients are unprepared—and hence reducing healthcare providers’ responsibility to mere technical application or customer service. At our institution, significant efforts have focused on embracing the unique and complementary responsibilities of patients (articulating their goals, values, and preferences) and physicians (using medical expertise to reach patient goals) for enabling appropriate plans of care. This includes re-structuring our AD form to more accurately represent patient’s values as the frame within which physicians are responsible for determining appropriate care. Rather than specifying interventions, the AD makes patients responsible for specifying what matters to them as well as what they value in terms of function, interaction, and level of acceptable burden, thus providing clear goals for clinicians to pursue—or when goals are not reachable by available medical interventions, to acknowledge and allow for logical shifts to what may be achieved, including, in end of life contexts, care focused on respect and dignity.

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.

Background: Advance care planning (ACP) promotes conversations about future health care needs, enacted if a person is incapable of making decisions at end-of-life that may be communicated through written documentation such as advance care directives. To meet the needs of multicultural and multifaith populations in Australia, an advance care planning website, ACPTalk, was funded to support health professionals in conducting conversations within diverse religious and cultural populations. ACPTalk aimed to provide religion-specific advance care planning content and complement existing resources. Objective: The purpose of this paper was to utilize the context, input, process, and product (CIPP) framework to conduct a formative and summative evaluation of ACPTalk. Methods: The CIPP framework was used, which revolves around 4 aspects of evaluation: context, input, process, and product. Context: health professionals’ solutions for the website were determined through thematic analysis of exploratory key stakeholder interviews. Included religions were determined through an environmental scan, Australian population statistics, and documentary analysis of project steering committee meeting minutes. Input: Project implementation and challenges were examined through documentary analysis of project protocols and meeting minutes. Process: To ensure religion-specific content was accurate and appropriate, a website prototype was built with content review and functionality testing by representatives from religious and cultural organizations and other interested health care organizations who completed a Web-based survey. Product: Website analytics were used to report utilization, and stakeholder perceptions were captured through interviews and a website survey. Results: Context: A total of 16 key stakeholder health professional (7 general practitioners, 2 primary health nurses, and 7 palliative care nurses) interviews were analyzed. Website solutions included religious and cultural information, communication ideas, legal information, downloadable content, and Web-based accessibility. Christian and non-Christian faiths were to be included in the religion-specific content. Input: Difficulties gaining consensus on religion-specific content were overcome by further state and national religious organizations providing feedback. Process: A total of 37 content reviewers included representatives of religious and cultural organizations (n=29), health care (n=5), and community organizations (n=3). The majority strongly agree or agree that the content used appropriate language and tone (92%, 34/37), would support health professionals (89%, 33/37), and was accurate (83%, 24/29). Product: Resource usage within the first 9 months was 12,957 page views in 4260 sessions; majority were (83.45%, 3555/4260) from Australia. A total of 107 Australian-based users completed the website survey; most felt information was accurate (77.6%, 83/107), easy to understand (82.2%, 88/107), useful (86.0%, 92/107), and appropriate (86.0%, 92/107). A total of 20 nurses (general practice n=10, palliative care n=8, and both disciplines n=2) participated in stakeholder interviews. Qualitative findings indicated overall positivity in relation to accessibility, functionality, usefulness, design, and increased knowledge of advance care planning. Recommended improvements included shortened content, a comparable website for patients and families, and multilingual translations. Conclusions: The CIPP framework was effectively applied to evaluate the development and end product of an advance care planning website.Although overall findings were positive, further advance care planning website development should consider the recommendations derived from this study.

Although advance care planning (ACP) can lead to more patient-centered care, the communication around it can be challenging in acute care hospitals, where saving a life or shortening hospitalization is important priorities. Our qualitative study in an acute care hospital in Japan revealed when specifically physicians and nurses start communication to facilitate ACP. Seven physicians and 19 nurses responded to an interview request, explaining when ACP communication was initiated with 32 patients aged 65 or older. Our qualitative approach employed descriptive analysis to identify major themes, which included “initiation by patients” and “initiation by healthcare professionals.” In the latter case, seven specific triggers were identified: (1) when the patients’ medical condition changed in terms of symptom relief, (2) when the patients’ medical condition changed in terms of prognostic prediction, (3) when serious events occurred, (4) when a choice of treatment was presented, (5) when the location for end-of-life care was chosen, (6) when the patients’ cognitive function deteriorated, and (7) when serious events settled down. Within this group of healthcare professionals, physicians were more focused on changes in their patients’ medical condition, whereas nurses focused more on their patients’ desire for a long-term perspective. Nurses encouraged patients to consider ACP themselves, which developed into an approach to respect patients’ autonomy. In acute care hospitals, it appeared to be desirable to have an early discussion where patients could understand the significance ACP, which would matter even after their discharge from the hospital.

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.

While advance care planning (ACP) is recognized as a key facilitator of high-quality, goal-concordant end-of-life care, black Americans are less likely to participate in ACP than non-Hispanic whites (Carr 2011; Detering et al. 2010). There are divided explanations for why these disparities persist. Some scholars attribute racial disparities in end-of-life care to socioeconomic (SES) differences between black and white Americans citing blacks’ and whites’ differentiated access to, control over, and use of material resources (Wilson 1978; Yearby 2011). Others assert that health care preferences do not solely reflect lack of resources or health literacy, but that the larger social context frames care preferences differently across racial and ethnic groups in American society (Alegria et al. 2011; Sewell and Pingel forthcoming). By turning the analytical lens to class-privileged black Americans, I investigate whether racism overflows the margins of class disadvantage. Using data from the Health and Retirement Study, I ran logistic regression and moderation models. I found that class-privileged blacks are less likely to engage in ACP than both high-SES and low-SES whites. The interaction of race and SES was negatively and significantly associated with ACP (OR=0.91; P

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.

Background Telephone and video telemedicine appointments have been a crucial service delivery method during the COVID-19 pandemic for maintaining access to health care without increasing the risk of exposure. Although studies conducted prior to the pandemic have suggested that telemedicine is an acceptable format for older adults, there is a paucity of data on the practical implementation of telemedicine visits. Due to prior lack of reimbursement for telemedicine visits involving nonrural patients, no studies have compared telephone visits to video visits in geriatric primary care. Objective This study aimed to determine (1) whether video visits had longer durations, more visit diagnoses, and more advance care planning discussions than telephone visits during the rapid implementation of telemedicine in the COVID-19 pandemic, and (2) whether disparities in visit type existed based on patient characteristics. Methods We conducted a retrospective, cross-sectional analysis of patients seen at two geriatric clinics from April 23 to May 22, 2020. Approximately 25% of patients who had telephone and video appointments during this time underwent chart review. We analyzed patient characteristics, visit characteristics, duration of visits, number of visit diagnoses, and the presence of advance care planning discussion in clinical documentation. Results Of the 190 appointments reviewed, 47.4% (n=90) were video visits. Compared to telephone appointments, videoconferencing was, on average, 7 minutes longer (mean 37.3 minutes, SD 10 minutes; P Conclusions Although clinicians spent more time on video visits than telephone visits, more than half of this study’s older patients did not use video visits, especially if they were from racial or ethnic minority backgrounds or Medicaid beneficiaries. This potential health care disparity merits greater attention.

Purpose To investigate the prevalence of advance directives, healthcare proxies, and legal representatives in Austrian intensive care units (ICUs), and to explore barriers faced by adults engaged in the contemplation and documentation phase of the advance care planning process. Methods Two studies were conducted: (1) A 4-week multicenter study covering seven Austrian ICUs. A retrospective chart review of 475 patients who presented to the ICUs between 1 January 2019 and 31 January 2019 was conducted. (2) An interview and focus group study with 12 semi-structured expert interviews and three focus groups with 21 adults was performed to gain insights into potential barriers faced by Austrian adults planning medical decisions in advance. Results Of the 475 ICU patients, 3 (0.6%) had an advance directive, 4 (0.8%) had a healthcare proxy, and 7 (1.5%) had a legal guardian. Despite the low prevalence rates, patients and relatives reacted positively to the question of whether they had an advance directive. Patients older than 55 years and patients with children reacted significantly more positively than younger patients and patients without children. The interviews and focus groups revealed important barriers that prevent adults in Austria from considering planning in advance for potentially critical health states. Conclusion The studies show low prevalence rates of healthcare documents in Austrian ICUs. However, when patients were asked about an advance directive, reactions indicated positive attitudes. The gap between positive attitudes and actual document completion can be explained by multiple barriers that exist for adults in Austria when it comes to planning for potential future incapacity.

In Japan, most residents with Hansen’s disease (leprosy) live in dedicated sanatoria because of an established quarantine policy, even after being cured of the primary disease. They suffer from secondary diseases and are advancing in age, and advance care planning (ACP) is increasingly crucial for them to live their lives with dignity in a sanatorium. In this study, we have three aims: (1) to understand how to promote communication about their wishes for medical treatment, care, and recuperation; (2) to identify required assistance; and (3) to explore how to promote ACP in a sanatorium. This study is a qualitative research conducted through semi-structured interviews. The study included 57 ex-Hansen’s disease patients and 66 staff (10 doctors, 27 nurses, 23 care workers, and 6 social workers) from 10 facilities. Ex-Hansen’s disease patients were expected to consider ACP, but this was in the context of uncertainty about whether a sanatorium would close and whether there would be doctors to manage their needs. They reported being confused when staff rushed to confirm their advance directives, feeling that they were not provided with enough information before being approached. Barriers to promoting ACP were found to be insufficient of team-based care and information sharing, ex-Hansen’s disease patients’ weak interest in their end of life, and their conservative thoughts. We believe that ACP can be achieved by listening to the wishes of recovered patients through regular home care visits by nurses and everyday support by care workers. Furthermore, multidisciplinary coordination is urgently needed for promoting ACP.

Studies of advance care planning (ACP) in persons living with dementia (PLWDs) are rare. We conducted an intervention development study to adapt an efficacious ACP intervention, SPIRIT (Sharing Patient’s Illness Representations to Increase Trust), for PLWDs in early stages and their surrogates and assessed the feasibility/acceptability of the adapted SPIRIT. SPIRIT was adapted by the investigators and underwent expert panel review. The refined SPIRIT was then evaluated in a randomized trial with 23 dyads of PLWDs and their surrogates. Dyads were randomized to SPIRIT in-person (in a private room in a memory clinic) or SPIRIT remote (via videoconferencing from home). Participants completed preparedness outcome measures (dyad congruence on goals of care, patient decisional conflict, surrogate decision-making confidence) 2-3 days postintervention along with a semi-structured interview. PLWDs’ levels of articulation of end-of-life wishes during SPIRIT sessions were rated (3 = expressed wishes very coherently, 2 = somewhat coherently, 1 = unable to express wishes coherently). Fourteen PLWDs had moderate dementia, but all 23 were able to articulate their end-of-life wishes very or somewhat coherently during the SPIRIT session. While decision-making capacity was higher in PLWDs who articulated their wishes very coherently, global cognitive function did not differ by articulation levels. PLWDs and surrogates perceived SPIRIT as beneficial, but the preparedness outcomes did not change from baseline to postintervention in either group. SPIRIT for PLWDs and surrogates engaged them in meaningful ACP discussions. Further research is warranted to test its efficacy and long-term outcomes with a larger and diverse sample.

Background Haemodialysis patients receive very little involvement in their end‐of‐life care decisions. Issues relating to death and dying are commonly avoided until late in their illness. This study aimed to explore the experiences and perceptions of doctors and nurses in nephrology for involving haemodialysis patients in end‐of‐life care decisions. Methods A semi‐structured qualitative interview study with 15 doctors and five nurses and thematic analysis of their accounts was conducted. The setting was a large teaching hospital in Wales, UK. Results Prognosis is not routinely discussed with patients, in part due to a difficulty in estimation and the belief that patients do not want or need this information. Advance care planning is rarely carried out, and end‐of‐life care discussions are seldom initiated prior to patient deterioration. There is variability in end‐of‐life practices amongst nephrologists; some patients are felt to be withdrawn from dialysis too late. Furthermore, the possibility and implications of withdrawal are not commonly discussed with well patients. Critical barriers hindering better end‐of‐life care involvement for these patients are outlined. Conclusions The study provides insights into the complexity of end‐of‐life conversations and the barriers to achieving better end‐of‐life communication practices. The results identify opportunities for improving the lives and deaths of haemodialysis patients.

Background and objectives Conservative care for patients aged 75 years and older with CKD stage 5 as a treatment option besides dialysis was proposed officially in the Netherlands in October 2016. This national survey showed the current implementation of this option in Netherlands nephrology departments. Design, setting, participants and measurement A web-based survey was sent to medical managers of 60 nephrology departments in the Netherlands in August 2016. Results Twenty-one medical managers (35%) completed the survey. The term "conservative care" is frequently used and well known. The estimated number of patients in whom the decision for maximal conservative care was made in 2015 was 310 of 2249 patients with CKD stage 5 age 75 years and older (range 5-50 patients per department). 164 patients became symptomatic and received no dialysis. There is no official registration for this treatment option and patient category. The practice patterns vary widely. Only one of 21 respondents reported a conservative care outpatient clinic. Formal training or education regarding conservative care is not available in most of departments. 95% of respondents discussed this treatment option with their patients. General practitioners are always being informed about their patient's decision. Their main role is providing or organizing palliative care support at the end of life and discussing advance care planning. Most respondents (86%) considered to include their patients in a prospective multicentre observational study, conservative care versus dialysis. Conclusions Conservative care as a treatment option for patients with CKD stage 5 aged 75 years and older is well established. The practice patterns are varied in the Netherlands. Follow-up studies are needed to see whether the new multidisciplinary guideline facilitates harmonization of practice pattern. Funding is needed to optimize the implementation of conservative care.

BackgroundAdvance care planning is being promoted as a central component of end-of-life policies in many developed countries, but there is concern that professionals find its implementation challenging.AimTo assess the feasibility of implementing advance care planning in UK primary care.Design of studyMixed methods evaluation of a pilot educational intervention.SettingFour general practices in south-east Scotland.MethodInterviews with 20 GPs and eight community nurses before and after a practice-based workshop; this was followed by telephone interviews with nine other GPs with a special interest in palliative care from across the UK.ResultsEnd-of-life care planning for patients typically starts as an urgent response to clear evidence of a short prognosis, and aims to achieve a `good death'. Findings suggest that there were multiple barriers to earlier planning: prognostic uncertainty; limited collaboration with secondary care; a desire to maintain hope; and resistance to any kind of `tick-box' approach. Following the workshop, participants' knowledge and skills were enhanced but there was little evidence of more proactive planning. GPs from other parts of the UK described confusion over terminology and were concerned about the difficulties of implementing inflexible, policy-driven care.ConclusionA clear divide was found between UK policy directives and delivery of end-of-life care in the community that educational interventions targeting primary care professionals are unlikely to address. Advance care planning has the potential to promote autonomy and shared decision making about end-of-life care, but this will require a significant shift in attitudes.

Background: Advance care planning allows patients to articulate their future care preferences should they no longer be able to make decisions on their own. Early advance care planning in outpatient settings provides benefits such as less aggressive care and fewer hospitalizations, yet it is underutilized due to barriers such as provider time constraints and communication complexity. Novel methods, such as patient portals, provide a unique opportunity to conduct advance care planning previsit planning for outpatient care. This follow-up to our pilot study aimed to conduct pragmatic testing of a novel electronic health record-tethered framework and its effects on advance care planning delivery in a real-world primary care setting. Objective: Our intervention tested a previsit advance care planning workflow centered around a framework sent via secure electronic health record-linked patient portal in a real-world clinical setting. The primary objective of this study was to determine its impact on frequency and quality of advance care planning documentation. Methods: We conducted a pragmatic trial including 2 sister clinical sites, one site implementing the intervention and the other continuing standard care. A total of 419 patients aged between 50 and 93 years with active portal accounts received intervention (n=200) or standard care (n=219). Chart review analyzed the presence of advance care planning and its quality and was graded with previously established scoring criteria based on advance care planning best practice guidelines from multiple nations. Results: A total of 19.5% (39/200) of patients who received previsit planning responded to the framework. We found that the intervention site had statistically significant improvement in new advance care planning documentation rates (P