BACKGROUND: Ethnicity may be associated with important aspects of end-of-life care, such as what treatments are received, access to palliative care and where people die. However, most studies have focused on end-of-life care of white, Hispanic and black patients. We sought to compare end-of-life care delivered to people of Chinese and South Asian ethnicity with that delivered to others from the general population, in Ontario, Canada.
METHODS: In this population-based cohort study, we included all people who died in Ontario, Canada, between Apr. 1, 2004, and Mar. 31, 2015. People were identified as having Chinese or South Asian ethnicity on the basis of a validated surname algorithm. We used modified Poisson regression analyses to assess location of death and care received in the last 6 months of life.
RESULTS: We analyzed 967 339 decedents, including 18 959 (2.0%) of Chinese and 11 406 (1.2%) of South Asian ethnicity. Chinese (13.6%) and South Asian (18.5%) decedents were more likely than decedents from the general population (10.1%) to die in the intensive care unit (ICU). The adjusted relative risk of dying in intensive care was 1.21 (95% confidence interval [CI] 1.15 to 1.27) for Chinese and 1.25 (95% CI 1.20 to 1.30) for South Asian decedents. In their last 6 months of life, decedents of Chinese and South Asian ethnicity experienced significantly more ICU admission, hospital admission, mechanical ventilation, dialysis, percutaneous feeding tube placement, tracheostomy and cardiopulmonary resuscitation than the general population.
INTERPRETATION: Decedents of Chinese and South Asian ethnicity in Ontario were more likely than decedents from the general population to receive aggressive care and to die in an ICU. These findings may be due to communication difficulties between patients and clinicians, differences in preferences about end-of-life care or differences in access to palliative care services.
OBJECTIVE: Although the psychometric properties of the Family Satisfaction with End-of-Life Care measure have been examined in diverse settings internationally; little evidence exists regarding measurement equivalence in Hispanic caregivers. The aim was to examine the psychometric properties of a short-form of the FAMCARE in Hispanics using latent variable models and place information on differential item functioning (DIF) in an existing family satisfaction item bank.
METHOD: The graded form of the item response theory model was used for the analyses of DIF; sensitivity analyses were performed using a latent variable logistic regression approach. Exploratory and confirmatory factor analyses to examine dimensionality were performed within each subgroup studied. The sample included 1,834 respondents: 317 Hispanic and 1,517 non-Hispanic White caregivers of patients with Alzheimer's disease and cancer, respectively.
RESULTS: There was strong support for essential unidimensionality for both Hispanic and non-Hispanic White subgroups. Modest DIF of low magnitude and impact was observed; flagged items related to information sharing. Only 1 item was flagged with significant DIF by both a primary and sensitivity method after correction for multiple comparisons: "The way the family is included in treatment and care decisions." This item was more discriminating for the non-Hispanic, White responders than for the Hispanic subsample, and was also a more severe indicator at some levels of the trait; the Hispanic respondents located at higher satisfaction levels were more likely than White non-Hispanic respondents to report satisfaction.
SIGNIFICANCE OF RESULTS: The magnitude of DIF was below the salience threshold for all items. Evidence supported the measurement equivalence and use for cross-cultural comparisons of the short-form FAMCARE among Hispanic caregivers, including those interviewed in Spanish.
Objectives: Given the ethnic/racial disparities in end-of-life care, this study aimed to describe and identify factors affecting engagement in three types of advance care planning including informal talk, living will, and durable power of attorney for health care among ethnic/racial minority older adults. Living will refers to any written instruction about medical treatments at the end-of-life while durable power of attorney for health care allows someone to make a health care decision when an individual is incapable of making a reasoned decision.
Design: We used a subset of racial/ethnic minority groups drawn from the second wave of the National Health Aging and Trends Survey (n = 543) collected in 2012.
Results: The descriptive result showed that informal talk (60%) happened most followed by durable power of attorney for health care (30%) and living will (26.5%) completion. Multivariate logistic regression analyses found that higher education and lower preference toward life-sustaining treatment were associated with engagement in all three types of advance care planning. Having multimorbidity and U.S. born were associated with having informal talk. Non-Hispanic others were more likely to have informal talk and complete durable power of attoreny for health care to compared to Blacks. Furthermore, married older adults were more likely to complete living wills compared to those separated/divorced or never married.
Conclusions: Our findings about different factors affecting engagement in advance care planning indicate that we may need targeted approaches to promote each type of advance care planning for ethnic/racial minority older adults.
Mexican Americans (MAs), 1 of 10 subgroups of Latinos, are the largest and fastest growing Latino subgroup in the United States; yet, their access to end-of-life (EOL) care using hospice services is low. An investigation was needed into extant research-based knowledge about factors influencing EOL care decisions among MAs to guide health-care professionals in assisting MAs to make timely, acceptable, and satisfactory EOL care decisions. To determine whether gender was an influence on EOL decision-making among older MAs, CINAHL and PubMed were searched for articles published between 1994 and 2018. Relevant sources were also identified through the reference lists of review articles. Reports were included if they were written in English, involved participants aged 50 years and older who identified themselves as MA, and data derived directly from participants. Reports in which MAs were not equally represented in the sample, large databases, and instrumentation development and testing articles were excluded. Of the 345 unduplicated articles identified in our electronic search and the 47 identified through review articles, 22 met the inclusion criteria. Content analysis was conducted using a priori codes from the Ethno-Cultural Gerontological Nursing Model (ECGNM). Only 8 (36%) of the 22 articles reported on MA older adults' gendered experiences related to EOL decision-making. Results indicate an association between gender and EOL decision-making. As the older MA population grows, tackling disparities in EOL services use requires attention to how culture and gender influence EOL decision-making and care.
The views of family carers who provide end of life care to people of advanced age are not commonly known. We conducted a bicultural study with bereaved New Zealand Maori (indigenous) and non-indigenous family carers who, on behalf of their older family member, reflected on the end of life circumstances and formal and informal care experienced by the older person. Semi-structured interviews were undertaken with 58 people (19 Maori and 39 non-Maori), who cared for 52 family members who died aged over 80 years. A Kaupapa Maori thematic analysis of family/whanau perspectives identified examples of good holistic care as well as barriers to good care. These are presented in a proposed Whare Tapa Wha Older Person’s Palliative Care model. Good health care was regarded by participants as that which was profoundly relationship-oriented and upheld the older person’s mana (authority, status, spiritual power) across four critical health domains: Whanau (social/family), Hinengaro (emotional/mental), Wairua (spiritual) and Tinana (physical) health domains. However, poor health care on one level impacted on all four domains affecting (reducing) mana (status). The “indigenous” model was applicable to both indigenous and non-indigenous experiences of end of life care for those in advanced age. Thus, Indigenous perspectives could potentially guide and inform end of life care for all.
Objectives: To investigate racial differences in implementation of 11 evidence-based cancer pain management strategies in a matched sample of patients in hospice.
Sample & Setting: 32 African American and 32 Caucasian American older adults (aged 65 years or older) with cancer pain receiving hospice care in the midwestern United States.
Methods & Variables: Matched cohort secondary data analysis of postintervention data in a cluster randomized controlled trial was used. Main outcomes are the summative and individual Cancer Pain Practice Index scores.
Results: There were few statistically significant or clinically meaningful differences in implementation of individual best practices for pain management by race. Assessment of primary pain characteristics and management of opioid-induced constipation with a bowel regimen was significantly lower in African Americans than in Caucasian Americans.
Implications for Nursing: African American older adults receiving hospice care at the end of life received pain management that was, overall, comparable to matched Caucasian American older adults. Hospice and oncology nurses play a critical role in effective pain management and should continue to implement evidence-based guidelines for pain management into daily practice. Diffusing the hospice model and principles of pain and symptom management into other settings and specialty care areas may reduce widespread pain disparities.
CONTEXT: Opportunities for the use of palliative care services are missed in African-American communities, despite Level I evidence demonstrating their benefits.
OBJECTIVE: Single-institution, stakeholder-engaged study to design an intervention to increase palliative care use in African-American communities.
METHODS: Two-phased qualitative research design guided by the Behavior Change Wheel (BCW) and Theoretical Domains Framework (TDF) models. In phase one, focus group sessions were conducted to identify barriers and facilitators of palliative care use, and the viability of community health workers (CHWs) as a solution. After applying the BCW and TDF to data gathered from phase one, phase two consisted of a stakeholder meeting to select intervention content and prioritize modes of delivery.
RESULTS: A total of 15 stakeholders participated in our study. Target behaviors identified were for patients to gain knowledge about benefits of palliative care, physicians to begin palliative care discussions earlier in treatment, and to improve patient-physician interpersonal communication. The intervention was designed to improve patient capability, physician capability, patient motivation, physician motivation, and increase patient opportunities to use palliative care services. Strategies to change patient and physician behaviors were all facilitated by CHWs and included: creation and dissemination of brochures about palliative care to patients, empowerment and activation of patients to initiate goals of care discussions, outreach to community churches, and expanding patient social support.
CONCLUSION: Use of a theory-based approach to facilitate the implementation of a multi-component strategy provided a comprehensive means of identifying relevant barriers and enablers of CHWs as an agent to increase palliative care use in African-American communities.
In the United States, racial and ethnic minorities and people with lower socioeconomic status (SES) face structural, health system, and interpersonal barriers to optimal health care, including palliative care. Much of the available data on palliative care in racial and ethnic minorities and people with lower SES have identified disparities according to race, ethnicity, and SES. Limitations to understanding disparities in palliative care include the fact that much of the available data are cross-sectional, drawn from administrative or claims data, or based on qualitative work in limited geographic areas. To advance our knowledge and achieve health equity with respect to palliative care in patient groups that have been understudied or that are known to receive disparate care, gaining a deeper understanding of the barriers to palliative care is necessary from patients, families, referring providers, and communities. In addition, cultural competency training for all members of the palliative care team and referring providers needs to be changed from being obligatory to being intentional and assessed continuously. Finally, concerted changes in coordination of care, payment structures, and policy are needed.
Hmong Americans have typically been unwilling to use biomedical palliative care for end-of-life needs. This has resulted in confusion and frustration for Hmong patients, families, and nurses. Hmongs' end-of-life care choices for family members usually involve in-home caregiving provided by the family using a combination of biomedicine and traditional healing methods. Health care decisions are made for the patient by the family and community in this familistic culture. A qualitative approach was used to explore the beliefs that ultimately determine end-of-life care goals and strategies for Hmong patients. Semistructured interviews were conducted with 15 family caregivers of terminally ill patients and 5 shamans and Hmong funeral officiants. Several themes affecting care choices were identified, including cultural legacies of the responsibility of end-of-life caregiving by the family, the desire for family privacy in caregiving, and the role of community in the care for the dying, as well as completion of the rituals that ensure the soul of the deceased reaches the afterlife. Suggestions for improving communication between Hmongs and biomedical providers include providing information about end-of-life care beliefs and strategies to biomedical care providers and providing information to Hmong patients and families about hospice and palliative care options and services to support family care.
BACKGROUND: People of Black and minority ethnic heritage are more likely to die receiving life supporting measures and less likely to die at home. End-of-life care decision making often involves adult children as advance care planning is uncommon in these communities. Physicians report family distress as being a major factor in continuing with futile care.
AIM: To develop a deeper understanding of the perspectives of elders of Black and minority ethnic heritage and their children, about end-of-life conversations that take place within the family, using a meta-ethnographic approach.
DESIGN: Systematic interpretive exploration using the process of meta-ethnography was utilised.
DATA SOURCES: CINAHL, MEDLINE, PubMed and PsycINFO databases were searched. Inclusion criteria included studies published between 2005 and 2019 and studies of conversations between ethnic minority elders and family about end-of-life care. Citation snowballing was used to ensure all appropriate references were identified. A total of 13 studies met the inclusion criteria and required quality level using Critical Appraisal Skills Programme.
RESULTS: The following four storylines were constructed: 'My family will carry out everything for me; it is trust'; 'No Mum, don't talk like that'; 'I leave it in God's hands'; and 'Who's going to look after us?' The synthesis reflected the dichotomous balance of trust and burden avoidance that characterises the perspectives of Black and minority ethnic elders to end-of-life care planning with their children.
Information about traditional end-of-life care customs was gathered from Maori New Zealanders. How health and palliative care services helped or hindered families to use their customs within different health care settings was also examined. The use of the digital story-telling method to create personalised short videos is reported on in this paper. Kaupapa Maori Research and social constructivist methods were employed to conduct face-to-face interviews with 61 Maori families (including someone with a life limiting illness), plant medicine healers, spiritual practitioners and health and palliative care providers. Of these, sixteen family representatives participated in a digital story telling workshop. A Kaupapa Maori thematic analysis confirmed earlier findings that the digital storytelling method was a useful technique to record Maori traditional caregiving customs. Subject material aligned with four dominant themes; (1) ‘whanau manaaki’, where the mana (value, prestige, authority) of family was given visibility and was celebrated; (2) the ‘importance of wairuatanga’ provided insight into the place of Maori spirituality, (3) the ‘importance of rongoa rakau’ highlighted the role of traditional plant medicines; and (4) the ‘cultural support provided by health professionals’ reflected the care values health and palliative Q3 care professionals should ideally adopt.
The need for cultural understanding is particularly important in end-of-life (EOL) care planning as the use of EOL care in minority populations is disproportionately lower than those who identify as Caucasian. Data regarding the use of EOL care services by Native Hawaiians in Hawai'i and the United States is limited but expected to be similarly disproportionate as other minorities. In a population with a lower life expectancy and higher prevalence of deaths related to chronic diseases such as cardiovascular disease, diabetes, and obesity, as compared to the state of Hawai'i as a whole, our objective was to review the current literature to understand the usage and perceptions of EOL care planning in the Native Hawaiian population. We searched ten electronic databases and after additional screening, seven articles were relevant to our research purpose. We concluded that limited data exists regarding EOL care use specifically in Native Hawaiians. The available literature highlighted the importance of understanding family and religion influences, educating staff on culturally appropriate EOL care communication, and the need for more research on the topic. The paucity of data in EOL care and decision-making in Native Hawaiians is concerning and it is evident this topic needs more study. From national statistics it looks as though this is another health disparate area that needs to be addressed and is especially relevant when considering the rapid increase in seniors in our population.
BACKGROUND: Racial and ethnic minorities are at risk for disparities in quality of care after out-of-hospital cardiopulmonary arrest (OHCA). As such, we examined associations between race and ethnicity and use of guideline-recommended and life-sustaining procedures during hospitalizations for OHCA.
METHODS: This was a retrospective study of hospitalizations for OHCA in all acute-care, non-federal California hospitals from 2009 to 2011. Associations between the use of (1) guideline-recommended procedures (cardiac catheterization for ventricular fibrillation/tachycardia, therapeutic hypothermia), (2) life-sustaining procedures (percutaneous endoscopic gastrostomy (PEG)/tracheostomy, renal replacement therapy (RRT)), and (3) palliative care and race/ethnicity were examined using hierarchical logistic regression analysis.
RESULTS: Among 51,198 hospitalizations for OHCA, unadjusted rates of cardiac catheterization were 34.9% in Whites, 19.8% in Blacks, 27.2% in Hispanics, and 30.9% in Asians (P < 0.01). Rates of therapeutic hypothermia were 2.3% in Whites, 1.1% in Blacks, 1.3% in Hispanics, and 1.9% in Asians (P < 0.01). Rates of PEG/tracheostomy and RRT were 2.2% and 9.8% in Whites, 5.7% and 19.9% in Blacks, 4.2% and 19.9% in Hispanics, and 3.4% and 18.2% in Asians, respectively (P < 0.01). Rates of palliative care were 14.8% in Whites, 9.6% in Blacks, 10.1% in Hispanics, and 14.3% in Asians (P < 0.01). Differences in utilization of procedures persisted after adjustment for patient and hospital-related factors.
CONCLUSION: Racial and ethnic minorities are less likely to receive guideline-recommended interventions and palliative care, and more likely to receive life-sustaining treatments following OHCA. These findings suggest that significant disparities exist in medical care after OHCA.
OBJECTIVE: Interventions are needed to improve mental health (i.e., depression, anxiety) and palliative care (i.e., symptoms, goals of care, and advance care planning) outcomes in Latino/as with advanced cancer.
METHODS: An interprofessional study team used the Ecological Validity Model and a participatory approach to adapt an evidence-based counseling intervention for Latino/as and integrate the counseling intervention with an evidence-based patient navigator intervention. Next, a small pilot study was conducted to understand and improve the feasibility of the integrated Puente para Cuidar intervention.
RESULTS: Adaptations were made to language, literacy, and content of the counseling intervention, and video vignettes of the counseling case studies were produced on the recommendation of Latino/a stakeholders. Bicultural, bilingual patient navigators were used as "cultural brokers" between Latino/a patients and the counselor. The pilot study of Puente para Cuidar demonstrated feasibility based on participant perception of helpfulness and acceptability and nearing goal visit completion rates.
CONCLUSIONS: A culturally adapted intervention to address mental health and palliative care needs in Latino/as with advanced cancer was developed from prior evidenced-based interventions using a cultural adaptation model and a participatory approach. The intervention is ready for effectiveness testing.
Background: The World Health Assembly urges members to build palliative care (PC) capacity as an ethical imperative. Nurses provide PC services in a variety of settings, including the home and may be the only health care professional able to access some disparate populations. Identifying current nursing services, resources, and satisfaction and barriers to nursing practice are essential to build global PC capacity.
Objective: To globally examine home health care nurses' practice, satisfaction, and barriers, regarding existing palliative home care provision.
Design: Needs assessment survey.
Setting/Subjects: Five hundred thirty-two home health care nurses in 29 countries.
Measurements: A needs assessment, developed through literature review and cognitive interviewing.
Results: Nurses from developing countries performed more duties compared with those from high-income countries, suggesting a lack of resources in developing countries. Significant barriers to providing home care exist: personnel shortages, lack of funding and policies, poor access to end-of-life or hospice services, and decreased community awareness of services provided. Respondents identified lack of time, funding, and coverages as primary educational barriers. In-person local meetings and online courses were suggested as strategies to promote learning.
Conclusions: It is imperative that home health care nurses have adequate resources to build PC capacity globally, which is so desperately needed. Nurses must be up to date on current evidence and practice within an evidence-based PC framework. Health care policy to increase necessary resources and the development of a multifaceted intervention to facilitate education about PC is indicated to build global capacity.
For nearly five years, bioethicists and neurologists debated whether Jahi McMath, an African American teenager, was alive or dead. While Jahi's condition provides a compelling study for analyzing brain death, circumscribing her life status to a question of brain death fails to acknowledge and respond to a chronic, if uncomfortable, bioethics problem in American health care—namely, racial bias and unequal treatment, both real and perceived. Bioethicists should examine the underlying, arguably broader social implications of what Jahi's medical treatment and experience represented. On any given day, disparities in the quality of health care and health outcomes for people of color in comparison to whites are evidenced in American hospitals and clinics. These disparities are not entirely explained by differences in patient education, insurance status, employment, income, expressed preference for treatments, and severity of disease. Instead, research indicates that, even for African Americans able to gain access to health care services and navigate institutional nuances, disparities persist across a broad range of services, including diagnostic screening and general medical care, mental health diagnosis and treatment, pain management, HIV-related care, and treatments for cancer, heart disease, diabetes, and kidney disease.
La recherche en santé autochtone au Canada a été négligée dans le passé et qualifiée de problématique, notamment en raison du manque de collaboration avec les peuples autochtones. L'Énoncé de politique des trois Conseils sur l'éthique de la recherche avec des êtres humains décrit au chapitre 9 la conduite éthique de la recherche axée sur les Premières nations, les Inuits et les Métis. Les principes PCAP® des Premières nations (propriété, contrôle, accès et possession) soulignent l'importance majeure de l'engagement et de la gouvernance autochtones. En vue d'assurer que les buts et les activités de la recherche développée soient réalisés en partenariat complet et significatif avec les peuples et les communautés autochtones, il est possible de faire appel à des méthodes de recherche participative communautaire (RPC) intégrant leur plein engagement. Les recherches utilisant des ensembles de données secondaires, telles que les données administratives sur la santé recueillies en routine, ne devraient plus être exclues de cette approche. Notre objectif était de décrire comment notre équipe de chercheurs universitaires, alliée à un organisme national de santé autochtone, a adapté les méthodes de RPC dans le cadre d'un projet de recherche utilisant des données recueillies antérieurement pour examiner les lacunes dans la prestation de soins de fin de vie aux peuples autochtones en Ontario. Nous décrivons le processus d'élaboration de ce partenariat de recherche et expliquons comment l'intégration des principes de base et des processus de formation du savoir autochtones ont guidé cette collaboration. Notre partenariat de recherche, qui implique l'adaptation de méthodes de RPC, illustre un processus d'engagement qui pourrait guider d'autres chercheurs désirant mener des recherches en santé autochtone à l'aide de données déjà recueillies. Nous faisons aussi état d'une entente de recherche transparente, négociée équitablement entre un organisme national de santé autochtone et des chercheurs, qui pourrait servir de cadre pour des collaborations de recherche similaires. Il est essentiel de s'assurer que les perspectives autochtones soient au cœur des processus de recherche et qu'elles soient reflétées dans ceux-ci lorsque des données administratives sur la santé sont utilisées.
OBJECTIVES: The end-of-life trajectory for persons with dementia is often protracted and difficult to predict, placing these individuals at heightened risk of live discharge from hospice. Risks for live discharge due to condition stabilization or failure to decline among patients with dementia are not well established. Our aim was to identify demographic, health, and hospice service factors associated with live discharge due to condition stabilization or failure to decline among hospice patients with dementia.
DESIGN: Retrospective cohort study.
SETTING: A large not-for-profit agency in New York City.
PARTICIPANTS: A total of 2629 hospice patients with dementia age 65 years and older.
MEASUREMENTS: Primary outcome was live discharge from hospice due to condition stabilization or failure to decline (vs death). Measures include demographic factors (race/ethnicity, Medicaid, sex, age, marital status, parental status), health characteristics (primary dementia diagnosis, comorbidities, functional status, prior hospitalization), and hospice service (location, length of service, number and timing of nurse visits).
RESULTS: Logistic regression models indicated that compared with white hospice patients with dementia, African American and Hispanic hospice patients with dementia experienced increased risk of live discharge (African American: adjusted odds ratio [aOR] = 2.42; 95% confidence interval [CI] = 1.34-4.38; Hispanic: aOR = 2.99; 95% CI = 1.81-4.94). Home hospice (aOR = 7.57; 95% CI = 4.04-14.18), longer length of service (aOR = 1.04; 95% CI = 1.04-1.05), and more days between nurse visits and discharge (aOR = 1.86; 95% CI = 1.56-2.21) were also associated with live discharge.
CONCLUSION: To avoid burdensome and disruptive transitions out of hospice in patients with dementia, interventions to reduce live discharge due to condition stabilization or failure to decline should be tailored to meet the needs of African American, Hispanic, and home hospice patients. Policies regarding sustained hospice eligibility should account for the variable and protracted end-of-life trajectory of patients with dementia.
BACKGROUND: Life-limiting illness plagues Native Americans, yet access to palliative and end-of-life care, including hospice care, is severely limited.
AIM: This study aimed to explore palliative and hospice care with Native American elders and tribal health educators on a Northern Plains reservation in the US.
METHODS: Using a community-based participatory approach, participants discussed the cultural acceptability of palliative and hospice care in their tribal community. Monthly talking circles were held over a 5-month period.
RESULTS: Opportunities were present for improving cultural awareness and advance directive education to elders. Challenges raised were related to infrastructure, tribal government and the Indian Health Service. Needs identified included cultural awareness and language education for health-care providers and advance directive education.
CONCLUSION: Community-based participatory research is useful when working with indigenous populations. Health professionals providing services to Native American communities must embrace cultural differences, seeking to learn from the culture itself how to best meet its people's needs.
OBJECTIVES: Latino-advanced cancer patients engage in advance care planning (ACP) at lower rates than non-Latino patients. The goal of the present study was to understand patients' and caregivers' preferred methods of communicating about ACP.
METHODS: Patients and caregivers were interviewed about cultural, religious, and familial beliefs that influence engagement in ACP and preferences for ACP communication.
RESULTS: Findings highlighted that Latino patients respect doctors' medical advice, prefer the involvement of family members in ACP discussions with doctors, hold optimistic religious beliefs (e.g., belief in miracles) that hinder ACP discussions, and prefer culturally competent approaches, such as using their native language, for learning how to discuss end-of-life (EoL) care preferences.
SIGNIFICANCE OF RESULTS: Key cultural, religious, and familial beliefs and dynamics influence Latino engagement in ACP. Patients prefer a family-centered, physician informed approach to discussing ACP with consideration and incorporation of their religious medical beliefs about EoL care. Promising targets for improving the communication of and engagement in ACP include integrating cultural and religious beliefs in ACP discussions, providing information about ACP from the physician, involving family members in ACP discussions and decision-making, and giving instructions on how to engage in ACP discussions.