Future policy and research for advance care planning in dementia: consensus recommendations from an international Delphi panel of the European Association for Palliative Care.

Advance care planning (ACP) is increasingly recognised in the global agenda for dementia care. The European Association for Palliative Care (EAPC) Taskforce on ACP in Dementia aimed to provide recommendations for policy initiatives and future research. We conducted a four-round Delphi study with a 33-country panel of 107 experts between September, 2021, and June, 2022, that was approved by the EAPC Board. Consensus was achieved on 11 recommendations concerning the regulation of advance directives, equity of access, and dementia-inclusive approaches and conversations to express patients' values. Identified research gaps included the need for an evidence-based dementia-specific practice model that optimises engagement and communication with people with fluctuating and impaired capacity and their families to support decision making, while also empowering people to adjust their decisions if their goals or preferences change over time. Policy gaps included insufficient health services frameworks for dementia-inclusive practice. The results highlight the need for more evidence and policy development that support inclusive ACP practice models.

Perceptions of Bereaved Caregivers and Clinicians About End-of-Life Care for Patients With Destination Therapy Left Ventricular Assist Devices.

Background Patients with left ventricular assist devices (LVADs) implanted as destination therapy may receive suboptimal preparation for and care at the end of life, but there is limited understanding of the reasons for these shortcomings. Exploring perceptions of individuals (caregivers and clinicians) who are closely involved in the end-of-life experience with patients with destination therapy LVADs can help identify key opportunities for improving care. Methods and Results We conducted semistructured qualitative interviews with 7 bereaved caregivers of patients with destination therapy LVADs and 10 interdisciplinary LVAD clinicians. Interviews explored perceptions of preparing for end of life, communicating about end of life, and providing and receiving end-of-life care, and were analyzed using a 2-step team-based inductive approach to coding and analysis. Six themes pertaining to end-of-life experiences were derived: (1) timing end-of-life discussions in the setting of unpredictable illness trajectories, (2) prioritizing end-of-life preparation and decision-making, (3) communicating uncertainty while providing support and hope, (4) lack of consensus on responsibility for end-of-life discussions, (5) perception of the LVAD team as invincible, and (6) divergent perceptions of LVAD withdrawal. Conclusions This study revealed 6 unique aspects of end-of-life care for patients with destination therapy LVADs as reported by clinicians and caregivers. Themes coalesced around communication, team-based care, and challenges unique to patients with LVADs at end of life. Programmatic changes may address some aspects, including training clinicians in LVAD-specific communication skills. Other aspects, such as standardizing the role of the palliative care team and developing practical interventions that enable timely advance care planning during LVAD care, will require multifaceted interventions.

Advance Care Planning During the COVID-19 Pandemic.

Advance care planning (ACP) is especially important during the COVID-19 pandemic. Previously identified barriers to ACP include lack of time during patient visits, billing, clinician and patient discomfort and lack of resources, and difficulties with documenting and accessing ACP documents. Here we describe new challenges and new opportunities for ACP that have arisen from the COVID-19 pandemic, both due to the complexities of the illness and expedited changes in some of the stagnancies in the health care system. The shared risk for COVID-19 that all people face brings urgency to institutional policy changes to ACP form completion. However, research should assess acceptability and effectiveness of these strategies.

Prevalence and factors associated with advanced care directives in a motor neuron disease multidisciplinary clinic in Australia.

OBJECTIVES: Motor neuron disease (MND) is a neurodegenerative disorder leading to functional decline and death. Multidisciplinary MND clinics provide an integrated approach to management and facilitate discussion on advanced care directives (ACDs). The study objectives are to analyse (1) the prevalence of ACD in our MND clinic, (2) the relationship between ACD and patient demographics and (3) the relationship between ACD decision-making and variables such as NIV, PEG, hospital admissions and location of death. METHODS: Using clinic records, all patients who attended the MND clinic in Liverpool Hospital between November 2014 and November 2019 were analysed. Data include MND subtypes, symptom onset to time of diagnosis, time of diagnosis to death, location and reason of death. ACD prevalence, non-invasive ventilation (NIV) and percutaneous endoscopic gastrostomy (PEG) requirements were analysed. RESULTS: There were 78 patients; M:F=1:1. 44 (56%) patients were limb onset, 28 (36%) bulbar onset, 4 primary lateral sclerosis and 2 flail limb syndrome presentations. 27% patients completed ACDs, while 32% patients declined ACDs. Patients born in Australia or in a majority English-speaking country were more likely to complete ACDs compared to those born in a non-English-speaking country. There was no significant correlation between ACD completion and age, gender, MND subtype, symptom duration, NIV, PEG feeding, location of death. CONCLUSION: One-quarter of patients completed ACDs. ACDs did not correlate with patient age, gender, MND subtype and symptom duration or decision-making regarding NIV, PEG feeding or location of death. Further studies are needed to address factors influencing patients' decisions regarding ACDs.

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.

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.

A randomized trial of a multi-level intervention to improve advance care planning and symptom management among low-income and minority employees diagnosed with cancer in outpatient community settings.

INTRODUCTION: Equitable delivery of advance care planning and symptom management among patients is crucial to improving cancer care. Existing interventions to improve the uptake of these services have predominantly occurred in clinic settings and are limited in their effectiveness, particularly among low-income and minority populations. METHODS: The "Lay health worker Educates Engages and Activates Patients to Share (LEAPS)" intervention was developed to improve advance care planning and symptom management among low-income and minority hourly-wage workers with cancer, in two community settings. The intervention provides a lay health worker to all patients newly diagnosed with cancer and aims to educate and activate patients to engage in advance care planning and symptom management with their oncology providers. In this randomized clinical trial, we will evaluate the effect on quality of life (primary outcome) using the validated Functional Assessment of Cancer Therapy - General Survey, at enrollment, 4- and 12- months post-enrollment. We will examine between-group differences on our secondary outcomes of patient activation, patient satisfaction with healthcare decision-making, and symptom burden (at enrollment, 4- and 12-months post-enrollment), and total healthcare use and healthcare costs (at 12-months post-enrollment). DISCUSSION: Multilevel approaches are urgently needed to improve cancer care delivery among low-income and minority patients diagnosed with cancer in community settings. The current study describes the LEAPS intervention, the study design, and baseline characteristics of the community centers participating in the study. ClinicalTrials.gov Registration #NCT03699748.

Awareness and Attitudes Toward Advance Care Planning Among Community-Dwelling Older Adults in China: A Mixed-Methods Study.

CONTEXT: Quality of palliative care and death in mainland China is at a low level of the rest of the world, the public is lacked of proper understanding of the relevant information is one of the important reasons. There has been a shift in policy of palliative care in municipalities recently in mainland China. OBJECTIVES: To measure the advance care planning-related knowledge and attitudes of Chinese community-dwelling older adults, in the hope of presenting a specific implementation of the strategy. METHODS: We conducted a mixed-method sequential explanatory study, composed of a quantitative survey followed by qualitative interviews. The first quantitative phase included 523 community elderly individuals, who completed a validated questionnaire. After statistical analysis, a semistructured qualitative interview has been developed and conducted with 16 of them in order to help explain findings obtained in the first phase. RESULTS: The study was conducted with 523 community-dwelling older adults. The cognition level of advance care planning (ACP) was low, and attitude toward ACP was active. Living alone or living with a spouse (and children), have a religion, poor health condition, and life-sustaining treatment-related experience can affect how they behave with ACP. However, lack of trust in ACP, lack of life education and relevant legislation or policies, and Chinese traditional culture and emotion may impede their take-up. CONCLUSIONS: This study indicated that the awareness and participation of ACP of community-dwelling older adults in mainland China are not enough. The influence of national conditions and culture should be fully considered during the process of ACP development.

Investigation and Analysis of Undergraduate Nursing Students' Attitudes Toward Advanced Care Planning and Their Willingness to Implement.

OBJECTIVE: The purpose of this study is to understand the attitude of undergraduate nursing students toward advanced care planning (ACP) and their willingness to implement ACP and to analyze its influencing factors, so as to provide evidence-based basis for life and death education and ACP-related training in colleges and universities. METHODS: A total of 312 nursing undergraduates from a university in Chengdu (China) were surveyed by using general information questionnaire, attitude scale of ACP, and willingness questionnaire to implement ACP. RESULTS: The scores of undergraduate nursing students' attitude toward ACP were 24.97 ± 2.75, and the scores of total willingness to ACP were 79.26 ± 9.70. Univariate analysis and multivariate linear regression analysis showed that religious belief, grade, family relationship, and family discussion of death were the factors influencing the willingness of nursing students to carry out ACP. CONCLUSIONS: The attitude of undergraduate nursing students toward ACP tended to be positive, but their cognition of ACP was misunderstood, and their willingness to implement ACP needed to be improved. To improve the awareness and implementating willingness of undergraduate nursing students to ACP, it was recommended that colleges and universities carried out systematic standardized life and death education courses and ACP-related training.

Perioperative care of geriatric patients.

The older population is expected to nearly double across the globe by 2050, and the baby boom cohort is expected to represent at least 20% of the US population by 2030. Geriatric patients will increasingly utilize the health-care system, and therefore surgical and perioperative care must be tailored to this sensitive group given the increased risk for perioperative complications. The literature was reviewed to highlight fundamental components of the preoperative evaluation as well as cardiac, pulmonary, and renal complications. Frailty is a multidimensional process that can lead to the physiologic effects of aging and estimates the risk of perioperative morbidity and mortality better than chronologic age alone. Health-care providers should assess a geriatric patient's cognitive status, decision-making capacity, frailty, advance care planning, medications, and anesthetic approach in a multidisciplinary fashion to ensure optimal care. The risks of postoperative cardiac, pulmonary, and renal complications should be evaluated and optimized preoperatively to reduce the potential for adverse outcomes.

Improving Advanced Care Planning through Physician Orders for Life-Sustaining Treatment (POLST) Expansion across the United States: Lessons Learned from State-Based Developments.

BACKGROUND: The Physician Orders for Life-Sustaining Treatment (POLST) Paradigm is an effective advance care planning tool. However, barriers to implementation persist. In the United States, POLST program development occurs at the state-level. Substantial differences between states has left POLST implementation largely unstandardized. No peer-reviewed studies to date have evaluated state-based POLST program development over time. OBJECTIVE: To assess and learn from the successes and barriers in state-based POLST program development over time to improve the reach of POLST or similar programs across the United States. DESIGN: An exploratory, prospective cohort study that utilized semistructured telephone interviews was conducted over a 3-year period (2012-2015). Stakeholder representatives from state POLST coalitions (n = 14) were repeatedly queried on time-relevant successes, barriers, and innovations during POLST program development with levels of legislative and medical barriers rated 1 to 10. Interviews were transcribed and analyzed using techniques grounded in qualitative theory. RESULTS: All coalition representatives reported continuous POLST expansion with improved outreach and community partnerships. Significant barriers to expansion included difficulty in securing funding for training and infrastructure, lack of statewide metric systems to adequately assess expansion, lack of provider support, and legislative concerns. Medical barriers (mean [standard deviation]: 5.0 [0.2]) were rated higher than legislative (3.0 [0.6]; P < .001). CONCLUSION: POLST programs continue to grow, but not without barriers. Based on the experiences of developing coalitions, we were able to identify strategies to expand POLST programs and overcome barriers. Ultimately the "lessons learned" in this study can serve as a guide to improve the reach of POLST or similar programs.

The exploration of the knowledge, attitudes and practice behaviors of advanced care planning and its related predictors among Taiwanese nurses.

BACKGROUND: Despite the documented and well known patient benefits of ACP, the completion of ACP, only a minority of patients, during the advanced or EOL stage of their illnesses, receive such care. The misconceptions about ACP for healthcare providers, such as nurses, might become potential barriers to the effective implication of ACP. Also, from the transcultural perspective, it is evident essential to explore Taiwanese nurses' attitudes, knowledge, and actions of ACP. The purposes of this study were to explore the implication of ACP or hospice care for nurses caring for non-cancer chronic illness patients at a regional teaching hospital in Taiwan; and, to identify predictors of those nurses' knowledge, attitudes, and actions toward ACP. METHODS: This cross-sectional study with a purposive sample of 218 nurses was conducted at a teaching hospital in southern Taiwan. Structured questionnaires were employed and data were analyzed with descriptive statistics, t-test, one-way ANOVAs, Pearson's correlation and multiple regressions. RESULTS: 16.1% of Taiwanese physicians actively initiated ACP issues or conversations with patients or their family members. Nurses' attitudes toward ACP were fairly positive but their knowledge about ACP was insufficient and actions of ACP were not positively executed. The predictors of ACP-Knowledge (ACP-K) included position title, education hours and lacking of educational training. The predictors of ACP-Attitude (ACP-A) included ACP-K and "fear of patient or family member not accepting", whereas ACP-A, position title, "patients do not feel necessary" and "not sure physician's concern" were the predictors of ACP-Act. CONCLUSION: Continuous education and training for nurses regarding ACP needs to be improved by taking those predictors found in this current study into account, and more studies on the nurse's role in ACP also should be further examined. TRIAL REGISTRATION: KAFGH 106-012. Date of registration 1 May 2017.

Planning Ahead for End-of-Life Healthcare among Iranian-American Older Adults: Attitudes and Communication of Healthcare Wishes.

The purpose of this study was to examine relationships between attitudes toward planning for end-of-life (EOL) care and social supports, spirituality, distrust of the US healthcare system, and acculturation; and to investigate a relationship between attitudes and communication of EOL wishes in Iranian-American older adults. A descriptive, cross-sectional study was used. Older adults (N = 135) were surveyed using Qualtrics online software. The participants were new immigrants to the U.S., highly educated, and insured with a generally positive self-reported health status. Of this sample, 47.4% reported that they communicated their EOL wishes orally or through written documentation. Favorable attitudes toward planning were associated with acculturation and healthcare system distrust, and, inversely, were negatively associated with spirituality. No significant association was found between attitudes and social support. Favorable attitudes predicted participants' communication of wishes. The findings can inform the provision of effective interventions to enhance culturally competent EOL care.

Provision of comprehensive, culturally competent palliative care in the Qikiqtaaluk region of Nunavut: Health care providers' perspectives.

OBJECTIVE: To explore health care providers' perceptions of the provision of palliative care in the Qikiqtaaluk (formerly known as Baffin) region of Nunavut. DESIGN: An exploratory, qualitative, cross-sectional design using in-depth, semistructured interviews. SETTING: Qikiqtaaluk region of Nunavut. PARTICIPANTS: Seven physicians and 6 registered nurses who worked in Iqaluit or other northern Inuit communities in the Qikiqtaaluk region of Nunavut. METHODS: Thirteen health care providers participated in in-person or telephone semistructured interviews, which were audiorecorded and transcribed verbatim. MAIN FINDINGS: Interviews with the participating health care providers in the Qikiqtaaluk region of Nunavut revealed 5 complex and interwoven themes that influence the provision of comprehensive, culturally competent palliative care services to Indigenous patients: respecting Inuit culture, end-of-life care planning, and the role of family; recognizing the importance of the northern community (sense of home); being aware of the limited health care resources; recognizing the critical role of medical interpreters; and improving the quality of palliative care programs and resources, as well as health care provider training in palliative care and Inuit end-of-life care. CONCLUSION: Health care providers in the Qikiqtaaluk region of Nunavut have identified several important themes that influence the provision of culturally sensitive and comprehensive palliative care, most notably the need to develop palliative care resources and programs. It is hoped that the results of this study can be used to help guide palliative care strategies including program development and educational initiatives for health care providers. These initiatives can help build community capacity within a currently underserviced population and improve end-of-life care services available to Nunavut patients and their families. Further studies are required to determine the perspectives of medical interpreters, as well as palliative care patients and their families.

Prevalence and correlates of advance care directives among older Australians accessing health and residential aged care services: multicentre audit study.

OBJECTIVES: It is important that the outcomes of advance care planning (ACP) conversations are documented and available at the point of care. Advance care directives (ACDs) are a subset of ACP documentation and refer to structured documents that are completed and signed by competent adults. Other ACP documentation includes informal documentation by the person or on behalf of the person by someone else (eg, clinician, family). The primary objectives were to describe the prevalence and correlates of ACDs among Australians aged 65 and over accessing health and residential aged care services. The secondary aim was to describe the prevalence of other ACP documentation. DESIGN AND SETTING: A prospective multicentre health record audit in general practices (n=13), hospitals (n=12) and residential aged care facilities (RACFs; n=26). PARTICIPANTS: 503 people attending general practice, 574 people admitted to hospitals and 1208 people in RACFs. PRIMARY AND SECONDARY OUTCOME MEASURES: Prevalence of one or more ACDs; prevalence of other ACP documentation. RESULTS: 29.8% of people had at least one ACD on file. The majority were non-statutory documents (20.9%). ACD prevalence was significantly higher in RACFs (47.7%) than hospitals (15.7%) and general practices (3.2%) (p<0.001), and varied across jurisdictions. Multivariate logistic regression showed that the odds of having an ACD were positively associated with greater functional impairment and being in an RACF or hospital compared with general practice. 21.6% of people had other ACP documentation. CONCLUSIONS: In this study, 30% of people had ACDs accessible and a further 20% had other ACP documentation, suggesting that approximately half of participants had some form of ACP. Correlates of ACD completion were greater impairment and being in an RACF or hospital. Greater efforts to promote and standardise ACDs across jurisdictions may help to assist older people to navigate and complete ACDs and to receive care consistent with their preferences. TRIAL REGISTRATION NUMBER: ACTRN12617000743369.

Factors That Influence Attitudes Toward End-of-Life Care Among Medical Students: Nationwide Survey for Fourth-Year Korean Medical Students.

BACKGROUND: Positive attitudes for end-of-life (EOL) care along with adequate education are key factors for the provision of quality EOL care. This national study was conducted to identify the factors that influence attitudes toward EOL care on medical students. METHOD: An anonymous survey was designed and administered to fourth-year medical students at all 41 medical schools in Korea. Topics related to EOL care were assessed in classroom teaching, bedside teaching, and feedback experiences during clinical clerkships. Seven questions for self-rated attitudes and affecting factors were analyzed toward EOL care. RESULTS: With a response rate of 49.2%, the median number of topics recognized by the students as having been delivered was 5 of 11 topics in classroom lectures and 1 of 8 topics in clinical experience. Although few (21.2%) participants indicated that they felt ready for EOL care practice, nevertheless, most felt that they should have adequate knowledge of and preparation for clinical competency in EOL care. Several parameters including respondent's demographics and exposure to EOL care topics in classroom and in bedside teaching influenced the responses to all 7 attitude questions. However, having more than 1 bedside experience was the only factor positively affecting all attitudinal measures. CONCLUSIONS: Clinical experience related to EOL care seems to be the utmost priory in fostering positive attitudes and competency among medical students.

Healthcare Providers' Attitudes, Knowledge, and Practice Behaviors for Educating Patients About Advance Directives: A National Survey.

BACKGROUND:: Advance care planning for end-of-life care emerged in the mid-1970's to address the need for tools, such as the advance directive (AD) legal document, to guide medical decision-making among seriously ill patients, their families, and healthcare providers. OBJECTIVE:: Study aims examine providers' perspectives on AD education that involve examining (1) a range of attitudes about educating patients, (2) whether prior knowledge was associated with practice behaviors in educating patients, and (3) specific factors among healthcare providers such as characteristics of work setting, knowledge, attitudes, and behaviors that may influence AD education and documentation. DESIGN:: To examine providers' views, we conducted a cross-sectional, online survey questionnaire of healthcare providers using social media outreach methods for recruitment. METHODS:: This study used a cross-sectional survey design to examine the proposed aims. Healthcare providers, recruited through a broad approach using snowball methods, were invited to participate in an online survey. Logistic regression analyses were used to examine providers' views toward AD education. RESULTS:: Of 520 participants, findings indicate that most healthcare providers said that they were knowledgeable about AD education. They also viewed providing education as beneficial to their practice. These findings suggest that having a positive attitude toward AD education and experiencing less organizational barriers indicate a higher likelihood that providers will educate patients regarding ADs. CONCLUSION:: Various disciplines are represented in this study, which indicates that attitudes and knowledge influence AD discussions. The importance of AD discussions initiated by healthcare providers is critical to providing optimal patient-centered care.

Successful Advance Care Planning in a Rural Nursing Home.

BACKGROUND:: Advance care planning (ACP) often culminates in the completion of advance care directives (ACD), which is a written record of informed decisions specifying the type and extent of desired medical treatment. Documentation of ACD in nursing homes in the United States indicates a 60% to 70% completion rate. There are little data on the time at which ACD are completed in relation to when the resident was admitted to the nursing home facility. OBJECTIVE:: To explore the success of advanced care planning at a large, rural long-term care (LTC) facility. METHODS:: A descriptive approach, using a retrospective chart review, of 167 residents was used to examine resident completion of health-care system documents, legal documents, predisposing factors (resident demographics and psychosocial characteristics), and the actual process of ACP as defined by the rural LTC facility. RESULTS:: This nursing home utilizes a document entitled resident preference for life-sustaining treatment (RPLST). For residents who do not have formal prepared advance directive documents, the RPLST serves to define resident and family choices for resuscitation and implementation of fluids, nutrition, medications, and antibiotics. The most striking finding was the completion rate of the RPLST within 100 days of being admitted to the nursing home. CONCLUSION:: Documentation of end-of-life preferences within 10 days of admission was achieved through the incorporation of RPLST during the resident admission process.

An Analysis of Recruitment Efficiency for an End-of-Life Advance Care Planning Randomized Controlled Trial.

BACKGROUND:: Optimizing recruitment efficiency is an important strategy to address the resource limitations that typically constrain clinical research. Surprisingly, little empiric data exist to guide research teams attempting to recruit a difficult population into similar studies. Our objective was to investigate factors associated with enrollment into an advance care planning interventional trial. METHODS:: This study used secondary data of patients with advanced cancer receiving treatment at an academic medical center in central Pennsylvania who were referred to a randomized controlled trial of an advance care planning intervention. Enrolled participants were compared to nonparticipants with regard to age, gender, race, season of recruitment, elapsed time between recruitment stage, distance to study site, and number of recruitment calls. RESULTS:: Of the 1988 patients referred, 200 participants were enrolled yielding a recruitment efficiency of 10%. Two-thirds of all enrolled participants were recruited with 1 or less phone calls, whereas only 5% were enrolled after 3 calls. There were no statistically significant differences in enrollment based on gender ( P = .88) or elapsed time between recruitment contacts ( P = .22). However, nonparticipants were slightly older ( P = .02). CONCLUSIONS:: Our finding that individuals were more likely to enroll within the first 3 phone calls suggests that recruitment efforts should be focused on making initial contacts with potential participants, rather than continuing attempts to those who are unable to be contacted easily. Researchers could optimize their recruitment strategy by periodically performing similar analyses, comparing differences between participants and nonparticipants.