Worry as a Mechanism to Motivate Information Seeking about Protective End-of-Life Communication Behaviors

Making known one’s end-of-life (EOL) care wishes via the processes of advance care planning (ACP) and advance directive (AD) completion is associated with many positive outcomes for patients including lower healthcare costs, greater patient-provider relationship satisfaction, increased quality of life, and more. Despite these benefits, fewer than 30% of patients in the United States engage in ACP or complete ADs. These low numbers are most likely due to several causes, including low self-efficacy and low motivation to engage in the process. Several researchers have examined the persuasive power of using worry to motivate patients to engage in preventive health behaviors. The present study expands upon this body of literature by examining patient intentions to seek information related to ACP and AD after being exposed to stimuli intended to arouse differing levels of worry regarding bad EOL outcomes. Participants (N = 804) were randomly assigned to either the high worry, low worry, or control group and asked to complete a questionnaire examining beliefs and information seeking intentions regarding ACP and AD completion. Additionally, to control for participants’ level of trait worry, each participant completed the Penn State Worry Questionnaire, which was treated as a covariate in the final analysis. A repeated measures MANCOVA found a statistically significant increase for the worrying conditions on the participants’ intention to seek information about ACP and ADs from time 1 to time 2 for those in the worry experimental conditions. However, those in the control group did not show a statistically significant increase. Additionally, exposure to the high worry condition was predictive of engaging in actual information seeking behavior about EOL care. Results of the experiment indicate worry is associated with greater motivation to engage in information seeking about ACP and AD. This study contributes to the literature on worry as a persuasive mechanism to motivate patients to engage in important preventative health behaviors.     

To What Extent Do Physician Orders for Life-Sustaining Treatment (POLST) Reflect Patients' Preferences for Care at the End of Life?

ObjectiveTo assess whether medical orders within Physician Orders for Life-Sustaining Treatment (POLST) forms reflect patients' preferences for care at the end of life.DesignThis cross-sectional study assessed the agreement between medical orders in POLST forms and the free-form text documentation of an advance care planning conversation performed by an independent researcher during a single episode of hospitalization.Setting and ParticipantsInpatients at a single public university hospital, aged 21 years or older, and for whom one of their attending physicians provided a negative answer to the following question: “Would I be surprised if this patient died in the next year?” Data collection occurred between October 2016 and September 2017.MeasuresAgreement between medical orders in POLST forms and the free-form text documentation of an advance care planning conversation was measured by kappa statistics.ResultsSixty-two patients were interviewed. Patients' median (interquartile range) age was 62 (56-70) years, and 21 patients (34%) were women. Overall, in 7 (11%) cases, disagreement in at least 1 medical order for life-sustaining treatment was found between POLST forms and the content of the independent advance care planning conversation. The kappa statistic for cardiopulmonary resuscitation was 0.92 [95% confidence interval (CI): 0.82-1.00]; for level of medical intervention, 0.90 (95% CI: 0.81-0.99); and for artificially administered nutrition, 0.87 (95% CI: 0.75-0.98).Conclusions and ImplicationsThe high level of agreement between medical orders in POLST forms and the documentation in an independent advance care planning conversation offers further support for the POLST paradigm. In addition, the finding that the agreement was not 100% underscores the need to confirm frequently that POLST medical orders accurately reflect patients' current values and preferences of care.     

Advance Directive Preferences Among Terminally Ill Older Patients and Its Facilitators and Barriers in China: A Scoping Review

ObjectivesTo explore advance directive (AD) preferences and the facilitators and barriers of promoting ADs among terminally ill older patients in China.DesignA scoping review was used to identify key themes in ADs.Setting and participantsStudies from 2007 to 2017 were identified from the MEDLINE and Cochrane libraries. Articles concerning important components of ADs in terminally ill older patients were selected.MeasuresEligible articles concerning important components of ADs in terminally ill older patients were thematically synthesized. Later, implementation evidence was identified from core components.ResultsWe used 13 articles and identified key components in ADs: (1) Chinese cultural characteristics; (2) policy support; (3) advance care planning (ACP); (4) hospice-palliative care (HPC); (5) prognosis disclosure and life-sustaining treatment preference; (6) knowledge about ADs for patients and their families; (7) the prevalence of ADs; (8) implementation of ADs; (9) staff experience and training; and (10) effective communication between patients, their families, and health care professionals. Facilitators in implementing ADs included previous comfort-oriented end-of-life care experience of patients or their families, and the enactment of relevant policy. Barriers included traditional Chinese cultural beliefs; lack of policy; lack of knowledge of ADs, ACP, and HPC; and poor communication between physicians, patients, and family members.Conclusions/ImplicationsChinese patients still showed positive preferences toward ADs. The implementation of ADs could be promoted through public education about ADs, the learning of ACP and HPC, and relevant policy development in China.     

The Compliance of End-of-Life Care Preferences Among Older Adults and Its Facilitators and Barriers: A Scoping Review

ObjectivesTo explore the compliance of end-of-life (EOL) care preferences, and the facilitators and barriers of promoting quality of EOL care among older adults.DesignA scoping review was used to identify key themes in the compliance of EOL care preferences among older adults.Setting and participantsStudies published between 2009 and 2020 were identified from the Medline and Cochrane libraries. Eligible articles containing components related to the compliance of EOL care preferences among older adults were selected.MeasuresThe eligible articles were thematically synthesized. Factors that affected the compliance of EOL care preferences among older adults were identified from the key components.ResultsIn total, 35 articles were included to identify the key components in the compliance of EOL care preferences: (1) supportive policy, (2) supportive environment, (3) cultural characteristics, (4) advance care planning (ACP), (5) the concordance of EOL care preferences between patients and surrogate decision makers, (6) prognosis awareness, and (7) patient's health status and the type of disease. Facilitators for the compliance of EOL care preferences included enactment of relevant policy, sufficient care institutions, the utilization of ACP, and poor health status. Barriers included lack of supportive policy, different culture, and low utilization of ACP.Conclusions/ImplicationsThe compliance of EOL care preferences was low among older adults. The compliance of EOL care preferences can be improved through relevant policy development and the utilization of ACP.     

The Evolution of Health Care Advance Planning Law and Policy

Context: The legal tools of health care advance planning have substantially changed since their emergence in the mid-1970s. Thirty years of policy development, primarily at the state legislative level addressing surrogate decision making and advance directives, have resulted in a disjointed policy landscape, yet with important points of convergence evolving over time. An understanding of the evolution of advance care planning policy has important implications for policy at both the state and federal levels.Methods: This article is a longitudinal statutory and literature review of health care advance planning from its origins to the present.Findings: While considerable variability across the states still remains, changes in law and policy over time suggest a gradual paradigm shift from what is described as a “legal transactional approach” to a “communications approach,” the most recent extension of which is the emergence of Physician Orders for Life-Sustaining Treatment, or POLST. The communications approach helps translate patients’ goals into visible and portable medical orders.Conclusions: States are likely to continue gradually moving away from a legal transactional mode of advance planning toward a communications model, albeit with challenges to authentic and reliable communication that accurately translates patients’ wishes into the care they receive. In the meantime, the states and their health care institutions will continue to serve as the primary laboratory for advance care planning policy and practice.     

A New Model for End-of-Life Care in Nursing Homes

ObjectivesThis study aimed to promote quality end-of-life (EOL) care for nursing home residents, through the establishment of advance care plan (ACP) and introduction of a new care pathway. This pathway bypassed the emergency room (ER) and acute medical wards by facilitating direct clinical admission to an extended-care facility.DesignAn audit on a new clinical initiative that entailed the Community Geriatrics Outreach Service, ER, acute medical wards, and an extended-care facility during winter months in Hong Kong.MethodsThe participants were older nursing home residents enrolled in an EOL program. We monitored the ratio of clinical to emergency admissions, ACP compliance rate, average length of stay (ALOS) in both acute hospital and an extended-care facility, and mortality rates.ResultsA total of 76 patients were hospitalized from January to March 2013. Of them, 30 (39%) were directly admitted to the extended-care facility, either through the liaison of Community Geriatrics Outreach Service (group A, 19/76, 25%) or transferred from the ER (group B, 11/76, 14%). The remaining 46 patients (group C, 61%) were admitted via the ER to acute medical wards following the usual pathway, followed by transfer to an extended-care facility if indicated. The ACP compliance rate was nearly 100%. In the extended-care unit, groups A and C had similar ALOS of 11.8 and 11.1 days, respectively, whereas group B had a shorter stay of 7.6 days. The ALOS of group C in acute medical wards was 3.5 days. The in-hospital mortality rates were comparable in groups A and C of 26% and 28%, respectively, whereas group B had a lower mortality rate of 18%.ConclusionsNearly 40% of EOL patients could be managed entirely in an extended-care setting without compromising the quality of care and survival. A greater number of patients may benefit from the EOL program by improving the collaboration between community outreach services and ER; and extending hours for direct clinical admission to an extended-care facility.     

Structuring healthcare advance directives: Evidence from Chinese end-of-life cancer patients' treatment preferences

Background

Patients' treatment decisions may be influenced by the ways in which treatment options are presented. There is little evidence on how patients with advanced cancer choose preferences for advance directives (ADs) in China. Informed by behavioural economics, we assess whether end-of-life (EOL) cancer patients held deep-seated preferences for their health care and whether default options and order effects influenced their decision-making.

Methods

We collected data on 179 advanced cancer patients who were randomly assigned to complete one of the four types of ADs: comfort-oriented care (CC) AD (comfort default AD); a life extension (LE)-oriented care option (LE default AD); CC (standard CC AD) and LE-oriented (standard LE AD). Analysis of variance test was used.

Results

In terms of the general goal of care, 32.6% of patients in the comfort default AD group retained the comfort-oriented choice, twice as many as in the standard CC group without default options. Order effect was significant in only two individual-specific palliative care choices. Most patients (65.9%) appointed their children to make EOL care decisions, but patients choosing the CC goal were twice as likely to ask their family members to adhere to their choices than patients who chose the LE goal.

Conclusion

Patients with advanced cancer did not hold deep-seated preferences for EOL care. Default options shaped decisions between CC and LE-oriented care. Order effect only shaped decisions in some specific treatment targets. The structure of ADs matters and influence different treatment outcomes, including the role of palliative care.

Patient or Public Contribution

Between August and November 2018, from 640 cancer hospital medical records fitting the selection criteria at a 3A level hospital in Shandong Province, we randomly selected 188 terminal EOL advanced cancer patients using a random generator programme to ensure all eligible patients had an equal chance of selection. Each respondent completes one of the four AD surveys. While respondents might require support in making their healthcare choices, they were informed about the purpose of our research study, and that their survey choices would not affect their actual treatment plan. Patients who did not agree to participate were not surveyed.     

The Role of Health Care Provider Goals,Plans, and Physician Orders for Life-Sustaining Treatment (POLST) in Preparing for Conversations About End-of-Life Care

The Physician Orders for Life-Sustaining Treatment (POLST) is a planning tool representative of an emerging paradigm aimed at facilitating elicitation of patient end-of-life care preferences. This study assessed the impact of the POLST document on provider goals and plans for conversations about end-of-life care treatment options. A 2 (POLST: experimental, control) × 3 (topic of possible patient misunderstanding: cardiopulmonary resuscitation, medical intervention, artificially administered nutrition) experimental design was used to assess goals, plan complexity, and strategies for plan alterations by medical professionals. Findings suggested that the POLST had little impact on plan complexity or reaction time with initial plans. However, preliminary evidence suggested that the utility of the POLST surfaced with provider responses to patient misunderstanding, in which differences in conditions were identified. Significant differences in goals reported as most important in driving conversational engagement emerged. Implications for findings are discussed.     

Advance Care Planning Engagement and End-of-life Preference Among Older Chinese Americans: Do Family Relationships and Immigrant Status Matter?

ObjectivesTo examine how immigrant status and family relationships are associated with advance care planning (ACP) engagement and end-of-life (EOL) preference in burial planning among older Chinese Americans, the largest subgroup of Asian Americans.DesignCross-sectional survey.SettingCommunities in Honolulu, Hawai'i.ParticipantsParticipants were 430 older Chinese Americans aged 55 years and older.MeasuresMeasures included ACP contemplation, ACP discussion, and EOL preference in burial planning, immigrant status, family cohesion, family conflict, demographic information, and health status.ResultsResults show that in comparison to foreign-born Chinese Americans, US-born Chinese Americans were more likely to have ACP contemplation [odds ratio (OR) 2.80, 95% confidence interval (CI) 1.39-5.63], ACP discussion (OR 3.02, 95% CI 1.50-6.08), and preferences for burial plans at the end of life (OR 4.56, 95% CI 2.04-10.18). Family conflict increased the possibility of having ACP contemplation (OR 1.21, 95% CI 1.07-1.38), ACP discussion (OR 1.22, 95% CI 1.07-1.39), and EOL preference in burial planning (OR 1.22, 95% CI 1.04-1.42), whereas family cohesion was not associated with these study outcomes.Conclusions and ImplicationsThis study suggests that ACP should be adapted to be more culturally appropriate, especially in a time of coronavirus and xenophobia, such as framing ACP as a tool to help families reduce stress while fulfilling filial obligations, in order to ensure equitable access to ACP.     

Building successful coalitions to promote advance care planning

This qualitative study explored the challenges and successes of an advance care planning (ACP) coalition formed at the University of Wisconsin called Life Planning 2000. Data were obtained from key informant interviews (n = 24) and grounded theory. Major themes included commitment (the need for leadership, recruitment of key persons, and funding); cohesiveness (disparate groups collaborating toward a common purpose); and outcomes (including educational tool development). Coalitions need to define short-, intermediate-, and long-term goals that result in measurable outcomes and an evaluation process. Resources must be commensurate with goals. Results indicate that strong leadership, paid staff adequate funding, and the collaboration of diverse groups working toward a common goal are essential if a coalition promoting end-of-life (EOL) care planning is to be successful.     

Clinical decision support technology to increase advance care planning in the primary care setting

Physicians are often unable to guide patients through the advance care planning (ACP) process due to cost and time constraints. We conducted a retrospective analysis in the primary care setting targeting older adults without an advance medical directive (AMD). An ACP educational packet was sent to intervention patients before their health maintenance examination (HME). Additionally, their physicians had access to a computerized clinical decision support system on AMD completion at the time of the HME. Control participants' physicians had access to the computerized decision support system and traditional resources only. All participants who received the packet were sent a follow-up survey. In all, 21.6% of intervention participants completed an AMD, compared with 4.1% of control participants. Combining clinical decision support systems and standardized processes enhances the ACP process.     

Opinions and use of advance directives by physicians at a tertiary care hospital

The physician-patient relationship is an essential part of end-of-life planning, including discussions of advance directives (AD). Physicians likely to encounter AD issues with their patients were identified and queried as to their knowledge, opinion, and experience with ADs. Though most physicians felt ADs were helpful to both physicians and patients, considerably less were familiar with hospital policies and the different types of ADs. Formal education in the use and function of ADs also appears to be lacking, suggesting a need to improve the way in which ADs are addressed during medical training.     

Racial/Ethnic Disparities in Nursing Home End-of-Life Care: A Systematic Review

ObjectiveHealth disparities are pervasive in nursing homes (NHs), but disparities in NH end-of-life (EOL) care (ie, hospital transfers, place of death, hospice use, palliative care, advance care planning) have not been comprehensively synthesized. We aim to identify differences in NH EOL care for racial/ethnic minority residents.DesignA systematic review guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses and registered in PROSPERO (CRD42020181792).Setting and ParticipantsOlder NH residents who were terminally ill or approaching the EOL, including racial/ethnic minority NH residents.MethodsThree electronic databases were searched from 2010 to May 2020. Quality was assessed using the Newcastle-Ottawa Scale.ResultsEighteen articles were included, most (n = 16) were good quality and most (n = 15) used data through 2010. Studies varied in definitions and grouping of racial/ethnic minority residents. Four outcomes were identified: advance care planning (n = 10), hospice (n = 8), EOL hospitalizations (n = 6), and pain management (n = 1). Differences in EOL care were most apparent among NHs with higher proportions of Black residents. Racial/ethnic minority residents were less likely to complete advance directives. Although hospice use was mixed, Black residents were consistently less likely to use hospice before death. Hispanic and Black residents were more likely to experience an EOL hospitalization compared with non-Hispanic White residents. Racial/ethnic minority residents experienced worse pain and symptom management at the EOL; however, no articles studied specifics of palliative care (eg, spiritual care).Conclusions and ImplicationsThis review identified NH health disparities in advance care planning, EOL hospitalizations, and pain management for racial/ethnic minority residents. Research is needed that uses recent data, reflective of current NH demographic trends. To help reduce EOL disparities, language services and cultural competency training for staff should be available in NHs with higher proportions of racial/ethnic minorities.     

Care Toward the End of Life in Older Populations and Its Implementation Facilitators and Barriers: A Scoping Review

Purpose

To inform health system improvements for care of elderly populations approaching the end of life (EOL) by identifying important elements of care and implementation barriers and facilitators.

Advance care planning for Māori,Pacific and Asian people: the views of New Zealand healthcare professionals

Despite the benefits of advance care planning (ACP), international research has suggested that in pluralistic and multicultural societies such as New Zealand, significant differences exist in the uptake of ACP between European‐based populations and other cultural groups [Crawley (2005)]. The purpose of this study was to therefore explore the views of generalist palliative care providers in both the community and hospital settings regarding the barriers to ACP adoption as well as methods to increase knowledge about ACP among Māori, Pacific and Asian cultural groups within New Zealand society. Eleven individual interviews, two joint interviews and three focus groups were conducted with health and social care professionals with a wide range of knowledge and experience in palliative care. Challenges were related to a number of issues based on culture, including family decision‐making style, a need to ‘do everything’ and a reluctance to discuss issues surrounding dying and death. Suggestions to increase the knowledge of ACP included techniques to improve information access and the utilisation of shared norms and values to assist with discussions between Māori, Pacific and Asian health professionals and their patients and families/whānau. Findings indicate a need for more family/whānau‐centred models of ACP, addressed much earlier in the healthcare process and within the community setting.     

POLST Is More Than a Code Status Order Form: Suggestions for Appropriate POLST Use in Long-Term Care

POLST (Physician Orders for Life-Sustaining Treatment) is a medical order form used to document preferences about cardiopulmonary resuscitation (CPR), medical interventions such as hospitalization, care in the intensive care unit, and/or ventilation, as well as artificial nutrition. Programs based on the POLST paradigm are used in virtually every state under names that include POST (Physician Orders for Scope of Treatment), MOLST (Medical Orders for Life-Sustaining Treatment), and MOST (Medical Orders for Scope of Treatment), and these forms are used in the care of hundreds of thousands of geriatric patients every year. Although POLST is intended for persons who are at risk of a life-threatening clinical event due to a serious life-limiting medical condition, some nursing homes and residential care settings use POLST to document CPR preferences for all residents, resulting in potentially inappropriate use with patients who are ineligible because they are too healthy. This article focuses on reasons that POLST is used as a default code status order form, the risks associated with this practice, and recommendations for nursing homes to implement appropriate use of POLST.     

Allow-Natural-Death (AND) Orders: Legal, Ethical, and Practical Considerations

Conversations with patients and families about the allow-natural-death (AND) order, along with the standard do-not-resuscitate (DNR) order during end-of-life (EOL) decision-making, may create engagement and understanding while promoting care that can be defended using enduring notions of autonomy, beneficence, and professional duty. Ethical, legal, and pragmatic issues surrounding EOL care decision-making seem to suggest discussion of AND orders as one strategy clinicians could consider at the individual practice level and at institutional levels. A discussion of AND orders, along with traditional DNR orders is presented. This is followed by argument and counter-argument focused on ethical, legal, and practical issues germane to EOL care decision-making associated with use of AND orders.     

Adherence to “No Transfer to Hospital” Advance Directives Among Nursing Home Residents

ObjectivesMany older adults in long-term care (LTC) experience acute health crises but are at high risk of transfer distress and in-hospital morbidity and mortality. Residents often complete advance directives (ADs) regarding future care wishes, including directives for hospital transfers. This study aims to estimate the prevalence of, and adherence to, “no transfer to hospital” ADs in LTC, and to explore the circumstances leading to transfers against previously expressed directives.DesignWe conducted a mixed methods study in 10 nursing homes in Nova Scotia, Canada. A total of 748 resident charts and Emergency Health Services (EHS) database notes were reviewed from 3 time periods spanning implementation of a new primary care model, Care by Design (CBD).MeasuresADs were divided into those requesting transfer to hospital vs on-site management only, which were then analyzed in relation to actual hospital transfers. Reasons for EHS calls, management, and qualitative data were derived from the EHS database. Resident variables were obtained from LTC charts. Measures were compared between time periods.ResultsADs were complete in 92.4% of charts. Paramedics were called for 80.5% of residents, and 73.6% were transferred to hospital, 51.3% of whom had explicit ADs to the contrary. The majority of those were transferred for fall-related injuries, followed by medical illness. Unclear care plans, symptom control, and perceived need for investigations and procedures all influenced transfer decisions.Conclusions/ImplicationsThe use of “no transfer to hospital” directives did not appear to impact the number of residents being transferred to acute care. Half of those transferred to hospital had explicit ADs to the contrary, largely driven by fall-related injury. The high incidence of injury-related transfers highlights an important gap in advance care planning. Clarifying transfer preferences for injury management in advance directives may lead to better end-of-life experiences for residents and improve effective resource utilization.     

Development of an interactive computer program for advance care planning

Objective  To describe the development of an innovative, multi-media decision aid for advance care planning.
Background  Advance care planning is an important way for people to articulate their wishes for medical care when they are not able to speak for themselves. Living wills and other types of advance directives are the most commonly used tools for advance care planning, but have been criticized for being vague, difficult to interpret, and inconsistent with individuals' core beliefs and values.
Results  We developed a multimedia, computer-based decision aid for advance care planning ( 'Making Your Wishes Known: Planning Your Medical Future' ) to overcome many of the limitations of standard advance directive forms. This computer program guides individuals through the process of advance care planning, and unlike standard advance directives, provides tailored education, values clarification exercises, and a decision-making tool that translates an individual's values and preferences into a specific medical plan that can be implemented by a health-care team. Pilot testing with 50 adult volunteers recruited from an outpatient primary care clinic showed high levels of satisfaction with the program. Further pilot testing with 34 cancer patients indicated that the program was perceived to be highly accurate at representing patients' wishes.
Conclusions  This paper describes the development of an innovative decision aid for advance care planning that was designed to overcome common problems with standard advance directives. Preliminary testing suggests that it is acceptable to users and is accurate.     

Efficacy of Advance Care Planning: A Systematic Review and Meta-Analysis

ObjectiveTo systematically review the efficacy of advance care planning (ACP) interventions in different adult patient populations.DesignSystematic review and meta-analyses.Data SourcesMedline/PubMed, Cochrane Central Register of Controlled Trials (1966 to September 2013), and reference lists.Study SelectionRandomized controlled trials that describe original data on the efficacy of ACP interventions in adult populations and were written in English.Data Extraction and SynthesisFifty-five studies were identified. Study details were recorded using a predefined data abstraction form. Methodological quality was assessed using the PEDro scale by 2 independent reviewers. Meta-analytic techniques were conducted using a random effects model. Analyses were stratified for type of intervention: ‘advance directives’ and ‘communication.’Main Outcomes and MeasuresPrimary outcome measures were completion of advance directives and occurrence of end-of-life discussions. Secondary outcomes were concordance between preferences for care and delivered care, knowledge of ACP, end-of-life care preferences, quality of communication, satisfaction with healthcare, decisional conflict, use of healthcare services, and symptoms.ResultsInterventions focusing on advance directives as well as interventions that also included communication about end-of-life care increased the completion of advance directives and the occurrence of end-of-life care discussions between patients and healthcare professionals. In addition, interventions that also included communication about ACP, improved concordance between preferences for care and delivered care and may improve other outcomes, such as quality of communication.ConclusionsACP interventions increase the completion of advance directives, occurrence of discussions about ACP, concordance between preferences for care and delivered care, and are likely to improve other outcomes for patients and their loved ones in different adult populations. Future studies are necessary to reveal the effective elements of ACP and should focus on the best way to implement structured ACP in standard care.