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.     

Advance Directives and HIV: A Current Trend in the Inner City

Throughout the 1980’s, HIV antiretroviral therapy was non-existent or insufficient, and patients admitted to hospitals were frequently terminal. In 1988 we evaluated the HIV related hospitalizations at the Lutheran Medical Center in Brooklyn, New York, and found that only 1.3 % of the patients had an advanced directive/living will. Fifty percent of the patients expired during their hospitalization. To assist health care professionals during this serious illness, medical decisions were needed from the patients and, at other times, from family members and/or significant others. Subsequently, patients were approached to discuss advance directives (AD). With the introduction of the Highly Active Antiretroviral Therapy, medical management has decreased HIV mortality. Patients may have started having different perceptions on the need for an AD. The study design was submitted to the Institutional Review Board (IRB), and the IRB granted a HIPPA waiver because this was a retrospective study which delinked the study data from any identification of the patient. The chart reviews were conducted to ascertain the existence of an AD for all patients admitted at the Lutheran Medical Center, Brooklyn, NY from 2004 to 2011. One hundred eighty-two patients were identified from their discharge codes for HIV or AIDS. The median age was 47 years (range 22–85 years). Median time since HIV diagnosis was 9.5 years (range 0–28 years). Ninety-two percent lacked an AD on admission. From the thirty patients that were older than 54 years of age, only four of them had an AD prior to admission. During hospitalization only 11 patients out of 187 enacted a new AD, which decreased the overall percentage of patients lacking an AD to 86.3 % (pre and during admission). The majority of HIV infected patients hospitalized lacked an AD. Our data did not indicate a greater predominance of ADs from a private practice or clinic setting. ADs did not increase with increasing age. Moreover, with longer years with an HIV diagnosis, the number of ADs did not increase. Our results would indicate that a different approach is necessary to adequately address ADs with this specific population, especially as their longevity increases.     

“I don’t need my patients’ opinion to withdraw treatment”: patient preferences at the end-of-life and physician attitudes towards advance directives in England and France

This paper presents the results of a qualitative interview study exploring English and French physicians’ moral perspectives and attitudes towards end-of-life decisions when patients lack capacity to make decisions for themselves. The paper aims to examine the importance physicians from different contexts accord to patient preferences and to explore the (potential) role of advance directives (ADs) in each context. The interviews focus on (1) problems that emerge when deciding to withdraw/-hold life-sustaining treatment from both conscious and unconscious patients; (2) decision-making procedures and the participation of proxies/relatives; (3) previous experience with ADs and views on their usefulness; and (4) perspectives on ways in which the decision-making processes in question might be improved. The analysis reveals differences in the way patient preferences are taken into consideration and shows how these differences influence the reasons physicians in each country invoke to justify their reluctance to adhering to ADs. Identifying cultural differences that complicate efforts to develop the practical implementation of ADs can help to inform national policies governing ADs and to better adapt them to practice.     

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.     

Documentation of advance directives among home health and hospice patients: United States, 2007

This report provides nationally representative data on documentation of advance directives (ADs) among home health (HH) and hospice patients. Advance directives were recorded for 29% of HH patients and 90% of hospice discharges. Among HH patients, increasing age and use of assistive devices were associated with greater odds of having an AD, while being Hispanic or black (relative to white) and enrolled in Medicaid decreased the odds of having ADs. Among hospice discharges, being enrolled in Medicare and having 4 or 5 activities of daily living (ADL) limitations were associated with higher odds of ADs while depression, use of emergency services, and being black (relative to White) were associated with lower odds. Even after adjustment for potentially confounding factors, racial differences persist in AD documentation in both care settings.     

More counselling for end-of-life decisions by GPs with own advance directives: A postal survey among German general practitioners

Background: Although general practitioners (GPs) are among the preferred contact persons for discussing end-of-life issues including advance directives (ADs), there is little data on how GPs manage such consultations.

Objectives: This postal survey asked German GPs about their counselling for end-of-life decisions.

Methods: In 2015, a two-sided questionnaire was mailed to 959 GPs. GPs were asked for details of their consultations on ADs: frequency, duration, template use, and whether they have own ADs. Statistical analysis evaluated physician characteristics associated with an above-average number of consultations on AD.

Results: The participation rate was 50.3% (n?=?482), 70.5% of the GPs were male; the average age was 54 years. GPs had an average of 18 years of professional experience, and 61.4% serve more than 900 patients per three months. Most (96.9%) GPs perform consultations on living wills (LW) and/or powers of attorney (PA), mainly in selected patients (72.3%). More than 20 consultations each on LWs and PAs are performed by 60% and 50% of GPs, respectively. The estimated mean duration of consultations was 21?min for LWs and 16?min for PAs. Predefined templates were used in 72% of the GPs, 50% of GPs had their ADs. A statistical model showed that GPs with ADs and/or a qualification in palliative medicine were more likely to counsel ≥20 patients per year for each document.

Conclusion: The study confirmed that nearly all German GPs surveyed provide counselling on ADs. Physicians with ADs counsel more frequently than those without such documents.     

The Association between Depression and Medication Nonpersistence in New Users of Antidiabetic Drugs

Objectives

To measure the association between depression and nonpersistence with antidiabetic drugs (ADs) among new users of oral ADs and to estimate factors associated with nonpersistence among these new users with depression.

Failure of the Current Advance Care Planning Paradigm: Advocating for a Communications-Based Approach

The purpose of advance care planning (ACP) is to allow an individual to maintain autonomy in end-of-life (EOL) medical decision-making even when incapacitated by disease or terminal illness. The intersection of EOL medical technology, ethics of EOL care, and state and federal law has driven the development of the legal framework for advance directives (ADs). However, from an ethical perspective the current legal framework is inadequate to make ADs an effective EOL planning tool. One response to this flawed AD process has been the development of Physician Orders for Life Sustaining Treatment (POLST). POLST has been described as a paradigm shift to address the inadequacies of ADs. However, POLST has failed to bridge the gap between patients and their autonomous, preferred EOL care decisions. Analysis of ADs and POLST reveals that future policy should focus on a communications-based approach to ACP that emphasizes ongoing interactions between healthcare providers and patients to optimize EOL medical care to the individual patient.     

Advance directives for health care among older community residents

Advance directives (ADs) for healthcare are useful planning tools for older people. In addition, the utilization of ADs is important for health and human services planners, administrators, and policy makers to understand because whether or not people have an AD, and what types of ADs they have can dramatically influence the treatment trajectories and the well-being of older people who can longer make decisions for themselves. Using telephone survey data with a random sample of Oklahoma residents age 60 and older, we examined the prevalence of four measures of AD use. Prior to the implementation of this survey in 2002, the Oklahoma Aging Services Division was very active in promoting two types of AD---the living will and the durable power of attorney for healthcare. More than half of those interviewed had a living will, two-fifths had a durable power of attorney for healthcare, and one-third had both ADs. Older age and higher levels of education were consistently associated with having ADs.     

Prevalence and Contents of Advance Directives in Patients Receiving Home Parenteral Nutrition

Background: Ethical issues may arise with patients who receive home parenteral nutrition (HPN) and have a change in their overall health status. We sought to determine the extent of advance care planning and the use of advance directives (ADs) by patients receiving HPN. Materials and Methods: Retrospective review of the medical records of adult patients newly started on HPN at the Mayo Clinic, Rochester, Minnesota, between January 1, 2003, and December 31, 2012, to determine the prevalence and contents of their ADs. Results: A total of 537 patients met the inclusion criteria. Mean (SD) age at commencement of HPN was 52.8 (15.2) years, and 39% (n = 210) were men. Overall, 159 patients (30%) had ADs. Many mentioned specific life‐prolonging treatments: cardiopulmonary resuscitation (44 [28%]), mechanical ventilation (43 [27%]), and hemodialysis (19 [12%]). Almost half mentioned pain control (78 [49%]), comfort measures (65 [41%]), and end‐of‐life management of HPN (76 [48%]). Many also contained general statements about end‐of‐life care (no “heroic measures”). The proportion specifically addressing end‐of‐life management of HPN (48%) was much higher than that previously reported in other populations with other life‐supporting care such as cardiac devices. The primary diagnosis or the indication for HPN was not correlated with whether or not the patient had an AD (P = .07 and .46, respectively). Conclusion: Although almost one‐third of the patients had an AD, less than half specifically mentioned HPN in it, which suggests that such patients should be encouraged to execute an AD that specifically addresses end‐of‐life management of HPN.     

Implementation of the Family Health Program and socio-spatial exclusion in the city of São Paulo, Brazil

The present article analyzes the implementation of the Family Health Program (FHP) in S?o Paulo, Brazil, taking as its reference the occupation of the city's space, characterized by strong socio-spatial segregation. The population coverage and consolidation achieved by the FHP and the partner institutions' legal and institutional formats were identified in 96 Administrative Districts (AD). The study then proceeded to stratify these ADs beginning with their position in a ranked social exclusion map. ADs were classified in five groups. Based on these results, a typology was produced in the FHP implementation in this capital city of the State of S?o Paulo. Clearly distinct patterns were identified when the ADs were ranked for exclusion/inclusion. FHP implementation was effective within the peripheral ADs, especially those in Group 1, indicating pressure for the Municipal Health Secretariat to comply with its discourse, which had assumed the FHP as a health care model to be implemented throughout the city, at least reaching the entire low-income population.     

The utility of standardized advance directives: the general practitioners’ perspective

Advance directives (AD) are written documents that give patients the opportunity to communicate their preferences regarding treatments they do or do not want to receive in case they become unable to make decisions. Commonly used pre-printed forms have different formats. Some offer space for patients to (a) appoint a surrogate decision maker, and/or (b) to determine future medical treatments and/or (c) give a statement of personal values. So far it is unknown which forms GPs preferably use and why they decide to do so. 23 semi-structured interviews with GPs were analysed using content analysis. Interviewees mainly use short templates (to appoint surrogate decision makers) and medium length templates with checkboxes to indicate patients’ preferences in regards to life prolonging measures. Especially when patients faced the progression of a disease, participants use the latter version. Only then, the interviewees remarked, patients are capable to rate concrete situations reliably. GPs also realize the importance of the verbal assessment of patients’ preferences; however they rarely keep a written form of the conversation. Some GPs hand out one or more templates and ask their patients to read and think about them at home with the option to talk to them about it later on, while others prefer their patients to fill them out alone at home. Regardless of template usage, most GPs emphasize that ADs require regular updates. GPs tend to see standardized advance directives mainly as a tool to start a conversation with their patients and to identify their real preferences and values. When the patient is still not facing the progression of an already existing disease it could be sufficient to only appoint a surrogate decision maker instead of creating a full AD. However, in all other situations, appointing a surrogate decision maker should be backed up by a written statement of a patient’s general values. Patients and their relatives should always have the opportunity to ask their GP for medical advice when drafting an AD. It is crucial to regularly verify and update existing ADs within the course of a disease.     

Frequency and determinants of advance directives concerning end-of-life care in The Netherlands

In the USA, the use of advance directives (ADs) has been studied extensively, in order to identify opportunities to increase their use. We investigated the prevalence of ADs and the factors associated with formulation of an AD in The Netherlands, using samples of three groups: the general population up to 60 years of age, the general population over 60 years of age, and the relatives of patients who died after euthanasia or assisted suicide. The associated factors were grouped into three components: predisposing factors (e.g. age, gender), enabling factors (e.g. education) and need factors (e.g. health-related factors). We found that living wills had been formulated by 3% of younger people, 10% of older people, and 23% of the relatives of a person who died after euthanasia or assisted suicide. Most living wills concerned a request for euthanasia. In all groups, 26-29% had authorized someone to make decisions if they were no longer able to do so themselves. Talking to a physician about medical end-of-life treatment occurred less frequently, only 2% of the younger people and 7% of the older people had done so. Most people were quite confident that the physician would respect their end-of-life wishes, but older people more so than younger people. In a multivariate analysis, many predisposing factors were associated with the formulation of an AD: women, older people, non-religious people, especially those who lived in an urbanized area, and people with less confidence that the physician would respect their end-of-life wishes were more likely to have formulated an AD. Furthermore, the enabling factor of a higher level of education, the need factor of contact with a medical specialist in the past 6 months, and the death of a marital partner were associated with the formulation of an AD.     

Human papillomavirus vaccination and the risk of autoimmune disorders: A systematic review and meta-analysis

IntroductionHuman papillomavirus (HPV) vaccination has been proven to effectively protect against HPV infection and infection-associated cancer. However, there are concerns about the relationship between HPV vaccination and the risk of autoimmune disorders (ADs). Therefore, we performed a systematic review and meta-analysis to comprehensively evaluate the relationship between HPV vaccination and ADs risk.MethodsTo identify relevant studies, we conducted a systematic search in EMBASE and PubMed databases of scientific articles published through June 2018. Fixed or random effects models were adopted to estimate overall relative risk.ResultsIn total, 20 studies (12 cohort studies, 6 case-control studies, and 2 randomized controlled trials) involving more than 169,000 AD events were included in our meta-analysis. Our results show that HPV vaccination was not associated with an increased risk of subsequent ADs (odds ratio [OR] = 1.003, 95% confidence interval (CI): 0.95–1.06), particularly among those with a prior ADs (OR = 0.82, 95% CI: 0.7–0.96). Most of the subgroup analysis results based on the location or type of ADs were consistent with the overall results.ConclusionNo evidence of an association between HPV vaccination and ADs was found. Given the low number of estimates for individual AD, additional and larger observational studies are needed to verify our findings.     

Advance directives in home health and hospice agencies: United States, 2007

This report provides nationally representative data on policies, storage, and implementation of advance directives (ADs) in home health and hospice (HHH) agencies in the United States using the National Home and Hospice Care Survey. Federally mandated ADs policies were followed in >93% of all agencies. Nearly all agencies stored ADs in a file at the agency, but only half stored them at the patient's residence. Nearly all agencies informed staff about the AD, but only 77% and 72% of home health agencies informed the attending physician and next-of-kin, respectively. Home health and hospice agencies are nearly universally compliant with ADs policies that are required in order to receive Medicare and Medicaid payments, but have much lower rates of adoption of ADs policies beyond federally mandated minimums.     

Quality of clinical supervision as perceived by attending doctors in university and district teaching hospitals

CONTEXT: Attending doctors (ADs) play important roles in the supervision of specialist registrars. Little is known, however, about how they perceive the quality of their supervision in different teaching settings. We decided to investigate whether there is any difference in how ADs perceive the quality of their supervision in university teaching hospital (UTH) and district teaching hospital (DTH) settings. METHODS: We used a standardised questionnaire to investigate the quality of supervision as perceived by ADs. Fifteen items reflecting good teaching ability were measured on a 5-point Likert scale (1-5: never-always). We investigated for factors that influenced the perceived quality of supervision using Likert scale items (1-5: totally disagree-totally agree) and open-ended questionnaires. RESULTS: A total of 83 ADs (UTH: 51; DTH: 32) were eligible to participate in the survey. Of these, 43 (52%) returned the questionnaire (UTH: 25; DTH: 18). There was no difference in the overall mean of the 15 items between the UTH (3.67, standard deviation [SD] 0.35) and DTH (3.73, SD 0.31) ADs. Attending doctors in the DTH group rated themselves better at 'teaching technical skills' (mean 3.50, SD 0.70), compared with their UTH counterparts (mean 3.0, SD 0.76) (P = 0.03). Analysis of variance of the overall means revealed no significant difference between the different hospital settings. CONCLUSIONS: The results suggest that teaching hospital environments do not influence how ADs perceive the quality of their supervision. Lack of time for teaching was perceived as responsible for poor supervision. Other factors found to influence AD perceptions of good supervision included effective teaching skills, communication skills and provision of feedback.     

Is the Brain Undernourished in Alzheimer’s Disease?

Cerebrospinal fluid (CSF) amino acid (AA) levels and CSF/plasma AA ratios in Alzheimer Disease (AD) in relation to nutritional state are not known. Methods: In 30 fasting patients with AD (46% males, 74.4 ± 8.2 years; 3.4 ± 3.2 years from diagnosis) and nine control (CTRL) matched subjects, CSF and venous blood samples were drawn for AA measurements. Patients were stratified according to nutritional state (Mini Nutritional Assessment, MNA, scores). Results: Total CSF/plasma AA ratios were lower in the AD subpopulations than in NON-AD (p < 0.003 to 0.017. In combined malnourished (16.7%; MNA < 17) and at risk for malnutrition (36.6%, MNA 17–24) groups (CG), compared to CTRL, all essential amino acids (EAAs) and 30% of non-EAAs were lower (p < 0.018 to 0.0001), whereas in normo-nourished ADs (46.7%, MNA > 24) the CSF levels of 10% of EAAs and 25% of NON-EAAs were decreased (p < 0.05 to 0.00021). CG compared to normo-nourished ADs, had lower CSF aspartic acid, glutamic acid and Branched-Chain AA levels (all, p < 0.05 to 0.003). CSF/plasma AA ratios were <1 in NON-AD but even lower in the AD population. Conclusions: Compared to CTRL, ADs had decreased CSF AA Levels and CSF/plasma AA ratios, the degree of which depended on nutritional state.     

Preferences in end-of-life care of older persons: after-death interviews with proxy respondents

This population-based study employing after-death interviews with proxies describes older persons' preferences regarding medical care at the end of life. Interviews were held with 270 proxy respondents of 342 deceased persons (age range 59-91) in the Netherlands, The deceased were respondents to the Longitudinal Aging Study Amsterdam. The prevalence of advance directives (ADs), preferences for medical decisions at the end of life (i.e. withholding treatment, physician-assisted suicide euthanasia) and preferences about the focus of treatment in the last week of life (i.e. comfort care versus extending life) were examined. Written ADs were present in 14% of the sample. A quarter had designated a surrogate decision-maker. Co-morbidity and perceived self-efficacy (PSE) were positively associated with ADs. About half the sample had expressed a preference in favour or against one or more medical decisions at the end of life. Predictors positively associated with expressing a preference were co-morbidity, dying from cancer, and PSE. Being religious was negatively associated with expressing a preference. The knowledge of the proxy regarding the older person's preference for the focus of treatment was dependent on the patient's symptom burden as perceived by the proxy. The majority of older persons had died without either an AD, or having expressed preferences for end-of-life care. Stimulating the formulation of ADs may help professionals who work with older people to understand these preferences better, especially in the case of non-cancer patients and those with low PSE.     

Abstract

Aims: The overall aims of this thesis were: a) to compare stroke unit (SU) care and its continuum with care on general wards (GW) for elderly patients concerning resource use and costs for care and rehabilitation focusing on assistive technology in a one-year follow-up and, b) to explore the use and cost of assistive devices (ADs), ability in daily activities and self-rated health-related quality of life (HRQL) longitudinally. Methods: Two hundred and forty-nine persons ≥70 years were followed in a randomized, prospective study evaluating stroke unit care after acute stroke. The patients were interviewed and observed four times during the first year by two registered occupational therapists. In two of the studies the patients were followed longitudinally. Results: There were no statistically significant differences in total resource use and costs for care and rehabilitation between the SUs and the GWs during the first year after stroke. Costs in relation to the severity at stroke onset showed statistically significant differences, indicating that patients with severe stroke were treated at a higher cost. Informal care widely exceeded the care provided by the community. The total cost of ADs was 2% of the total costs of care and rehabilitation during the first year. One third of the patients had ADs before stroke. One year after stroke the majority of the patients used ADs. There was a statistically significant difference between the SU group and the GW group in the proportion of patients who had supplementary ADs prescribed between 0-3 months after stroke; the patients at the SU had a higher number of uncomplicated and cheap ADs prescribed. The ADs had a large impact and were prescribed at low cost. Different types of ADs were needed at different stages in the rehabilitation process. Constant routine evaluation of elderly patients with stroke is recommended during the first year after acute stroke. High concordance was found between the assessments in the Functional Independence Measure (FIM?) and the Barthel Index (BI). The assessments in the 7-level FIM? polarize, and the intermediary levels are rarely used, suggesting that a 5-level FIM is sufficient. There were no statistically significant differences between the SU group and the GW group regarding dependence or HRQL as assessed longitudinally. There were statistically significant differences in daily activities and HRQL as assessed with the 5-level FIM and the Nottingham Health Profile (NHP) in patients who used at least one AD and those who did not. Conclusions: Since the majority of the patients with stroke used ADs one year after acute stroke but at relatively low cost, assistive technology must be considered to be one of the best tools for maintaining the highest possible level of daily activity in this patient group. Regular routine evaluations are required both for best use of resources and adaptation to individual needs. The 5-level FIM proved to be useful, but further research into its clinical utility is required. More attention should be paid to the role of spouses as caregivers in stroke survivors, since informal care carries a far greater burden than the care provided by the community. Support schemes of all types are required to relieve the spouses.