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Brief Communication: The Relationship between Having a Living Will and Dying in Place
Abstract
Background: Living wills, a type of advance directive, are promoted as a way for patients to document preferences for life-sustaining treatments should they become incompetent. Previous research, however, has found that these documents do not guide decision making in the hospital. Objective: To test the hypothesis that people with living wills are less likely to die in a hospital than in their residence before death. Design: Secondary analysis of data from a nationally representative longitudinal study. Setting: Publicly available data from the Asset and Health Dynamics Among the Oldest Old (AHEAD) study. Patients: People older than 70 years of age living in the community in 1993 who died between 1993 and 1995. Measurements: Self-report and proxy informant interviews conducted in 1993 and 1995. Results: Having a living will was associated with lower probability of dying in a hospital for nursing home residents and people living in the community. For people living in the community, the probability of in-hospital death decreased from 0.65 (95% Cl, 0.58 to 0.71) to 0.52 (Cl, 0.42 to 0.62). For people living in nursing homes, the probability of in-hospital death decreased from 0.35 (Cl, 0.23 to 0.49) to 0.13 (Cl, 0.07 to 0.22). Limitations: Retrospective survey data do not contain detailed clinical information on whether the living will was consulted. Conclusion: Living wills are associated with dying in place rather than in a hospital. This implies that previous research examining only people who died in a hospital suffers from selection bias. During advance care planning, physicians should discuss patients' preferences for location of death.
... Data from the Get With The Guidelines (GWTG)-Resuscitation registry have shown that the rate of survival to discharge after in-hospital cardiac arrest (IHCA) is 25.8%, and 45% of patients present with shockable rhythms, such as ventricular fibrillation and pulseless ventricular tachycardia. [1] To prevent these life-threatening events, multiple strategies have been developed, including the rapid response system (RRS), [2,3] and advance care planning (ACP), such as a donot-resuscitate [4] / do-not-attempt-resuscitate (DNAR) orders, [5,6] and have also been introduced into clinical practice. Indeed, several meta-analyses and reviews have demonstrated that RRS is associated with reductions in cardiopulmonary arrest and hospital mortality rates. ...
... The implementation of RRS during hospitalization is potentially justifiable because of possible benefits, such as the reduction in non-intensive care unit (ICU) cardiopulmonary arrest and hospital mortality. [6][7][8] However, a meta-analysis by Chan et al [11] revealed that the introduction of RRS was associated with a reduction in cardiac arrest rates, but failed to reduce inhospital mortality. Lyons et al [12] showed that RRS potentially improves outcomes but elucidates inconclusive results, this is partly because of the heterogeneous nature of RRS, including the activation criteria. ...
... [7][8][9] Furthermore, in patients in terminal stages, advance directives, such as a DNAR order and ACP facilitate the decision-making among medical staff who managing these patients in the critical settings to determine which strategies should affect the code status decision rate, and possibly improve the rate of survival to discharge. [5,6] In contrast, there is controversy on the role of the RRS in hospital mortality; several reviews and meta-analyses revealed that the RRS failed to demonstrate a reduction in hospital mortality. [11,12,18] The clarification of this important issue, therefore, would confer substantial benefits in the context of in-hospital critical care medicine. ...
Rapid response systems (RRS) have been introduced worldwide to reduce unpredicted in-hospital cardiac arrest (IHCA) and in-hospital mortality. The role of advance care planning (ACP) in the management of critical patients has not yet been fully determined in Japan.
We retrospectively assessed the characteristics of all inpatients with unpredicted IHCA in our hospital between 2016 and 2018. Yearly changes in the number of RRS activations and the incidence of unpredicted IHCA with or without code status discussion were evaluated from 2014 to 2018. Hospital standardized mortality ratios were assessed from the data reported in the annual reports by the National Hospital Organization.
A total of 81 patients (age: 70.9 ± 13.3 years) suffered an unpredicted IHCA and had multiple background diseases, including heart disease (75.3%), chronic kidney disease (25.9%), and postoperative status (cardiovascular surgery, 18.5%). Most of the patients manifested non-shockable rhythms (69.1%); survival to hospital discharge rate was markedly lower than that with shockable rhythms (26.8% vs 72.0%, P < .001). The hospital standardized mortality ratios was maintained nearly constant at approximately 50.0% for 3 consecutive years. The number of cases of RRS activation markedly increased from 75 in 2014 to 274 patients in 2018; conversely, the number of unpredicted IHCA cases was reduced from 40 in 2014 to 18 in 2018 (P < .001). Considering the data obtained in 2014 and 2015 as references, the RRS led to a reduction in the relative risk of unpredicted IHCA from 2016 to 2018 (ie, 0.618, 95% confidence interval 0.453–0.843). The reduction in unpredicted IHCA was attributed partly to the increased number of patients who had discussed the code status, and a significant correlation was observed between these parameters (R² = 0.992, P < .001). The reduction in the number of patients with end-stage disease, including congestive heart failure and chronic renal failure, paralleled the incidence of unpredicted IHCA.
Both RRS and ACP reduced the incidence of unpredicted IHCA; RRS prevents progression to unpredicted IHCA, whereas ACP decreases the number of patients with no code status discussion and thus potentially reducing the patient subgroup progressing to an unpredicted IHCA.
... [9][10][11][12] Degenholtz et al. and Silveira et al. found that American elderly patients who completed ADs were less likely to die in nursing homes or hospitals and more often receive care consistent with their preferences. 13,14 Halpern et al. found that ADs provide seriously ill US patients with an opportunity to counter the tendency to administer treatments to extend life. 15 Given the importance of treatment choices embedded in ADs, it is important to understand how the structure of ADs might affect patient preferences. ...
... Behavioural economics suggests that the preference for hospice care or invasive treatment might be 'constructed' when people are asked to select from a predetermined list of options, rather than reflecting a patient's deep-rooted preferences. 17 Although the effect of the default option on patients has been verified in several studies, [5][6][7][8][13][14][15] its effect on patients with advanced cancer remains unstudied. Unlike other types of seriously ill patients, patients with advanced cancer are in an irreversible and painful healthcare stage and EOL cancer care can only delay death for a short period of time. ...
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.
... Advance care planning (ACP), a process by which people communicate their preferences for future medical care, 1,2 is associated with a higher likelihood of patients receiving care consistent with their goals and higher patient and family satisfaction with end of life care. [3][4][5][6] However, ACP rates are as low as 20% to 30% among older, socioeconomically disadvantaged populations-including people of color and those with lower income-compared with rates higher than 50% among older adults overall. Rates of documented ACP in the electronic health record (EHR) are even lower. ...
Importance
Advance care planning (ACP) is low among older adults with socioeconomic disadvantage. There is a need for tailored community-based approaches to increase ACP, but community patterns of ACP are poorly understood.
Objective
To examine the association between neighborhood socioeconomic status (nSES) and ACP and to identify communities with both low nSES and low rates of ACP.
Design, Setting, and Participants
This cross-sectional study examined University of California San Francisco electronic health record (EHR) data and place-based data from 9 San Francisco Bay Area counties. Participants were primary care patients aged 65 years or older and living in the San Francisco Bay Area in July 2017. Statistical analysis was performed from May to June 2020.
Exposures
Patients’ home addresses were geocoded and assigned to US Census tracts. The primary factor, nSES, an index combining area-level measures of income, education, poverty, employment, occupation, and housing or rent values, was divided into quintiles scaled to the distribution of all US Census tracts in the Bay Area (Q1 = lowest nSES). Covariates were from the EHR and included health care use (primary care, outpatient specialty, emergency department, and inpatient encounters in the prior year).
Main Outcomes and Measures
ACP was defined as a scanned document (eg, advance directive), ACP Current Procedural Terminology code, or ACP note type in the EHR.
Results
There were 13 104 patients included in the cohort—mean (SD) age was 75 (8) years, with 7622 female patients (58.2%), 897 patients (6.8%) identified as Black, 913 (7.0%) as Latinx, 3788 (28.9%) as Asian/Pacific Islander, and 748 (5.7%) as other minority race/ethnicity, and 2393 (18.3%) self-reported that they preferred to speak a non-English language. Of these, 3827 patients (29.2%) had documented ACP. The cohort was distributed across all 5 quintiles of nSES (Q1: 1426 patients [10.9%]; Q2: 1792 patients [13.7%]; Q3: 2408 patients [18.4%]; Q4: 3330 patients [25.4%]; Q5: 4148 patients [31.7%]). Compared with Q5 and after adjusting for health care use, all lower nSES quintiles showed a lower odds of ACP in a graded fashion (Q1: adjusted odds ratio [aOR] = 0.71 [95% CI, 0.61-0.84], Q2: aOR = 0.74 [95% CI, 0.64-0.86], Q3: aOR = 0.81 [95% CI, 0.71-0.93], Q4: aOR = 0.82 [95% CI, 0.72-0.93]. A bivariable map of ACP by nSES allowed identification of 5 neighborhoods with both low nSES and ACP.
Conclusions and Relevance
In this study, lower nSES was associated with lower ACP documentation after adjusting for health care use. Using EHR and place-based data, communities of older adults with both low nSES and low ACP were identified. This is a first step in partnering with communities to develop targeted, community-based interventions to meaningfully increase ACP.
... The 2 randomized clinical trials 11,12 (RCTs) showing benefits of ADs included only very elderly patients who were already in nursing homes or hospitals. Observational studies have shown that patients who complete ADs in the community less commonly die in a hospital, [13][14][15][16] more often receive care consistent with their preferences, 15 and, in certain regions, receive less costly care. 16 However, the likelihood of unmeasured differences between patients who do and do not choose to complete ADs precludes inferences regarding whether AD completion or the choices made in ADs cause such benefits. ...
Importance
There is limited evidence regarding how patients make choices in advance directives (ADs) or whether these choices influence subsequent care.
Objective
To examine whether default options in ADs influence care choices and clinical outcomes.
Design, Setting, and Participants
This randomized clinical trial included 515 patients who met criteria for having serious illness and agreed to participate. Patients were enrolled at 20 outpatient clinics affiliated with the University of Pennsylvania Health System and the University of Pittsburgh Medical Center from February 2014 to April 2016 and had a median follow-up of 18 months. Data analysis was conducted from November 2018 to April 2019.
Interventions
Patients were randomly assigned to complete 1 of the 3 following ADs: (1) a comfort-promoting plan of care and nonreceipt of potentially life-sustaining therapies were selected by default (comfort AD), (2) a life-extending plan of care and receipt of potentially life-sustaining therapies were selected by default (life-extending AD), or (3) no choices were preselected (standard AD).
Main Outcomes and Measures
This trial was powered to rule out a reduction in hospital-free days in the intervention groups. Secondary outcomes included choices in ADs for an overall comfort-oriented approach to care, choices to forgo 4 forms of life support, patients’ quality of life, decision conflict, place of death, admissions to hospitals and intensive care units, and costs of inpatient care.
Results
Among 515 patients randomized, 10 withdrew consent and 13 were later found to be ineligible, leaving 492 (95.5%) in the modified intention-to-treat (mITT) sample (median [interquartile range] age, 63 [56-70] years; 279 [56.7%] men; 122 [24.8%] black; 363 [73.8%] with cancer). Of these, 264 (53.7%) returned legally valid ADs and were debriefed about their assigned intervention. Among these, patients completing comfort ADs were more likely to choose comfort care (54 of 85 [63.5%]) than those returning standard ADs (45 of 91 [49.5%]) or life-extending ADs (33 of 88 [37.5%]) (P = .001). Among 492 patients in the mITT sample, 57 of 168 patients [33.9%] who completed the comfort AD, 47 of 165 patients [28.5%] who completed the standard AD, and 35 of 159 patients [22.0%] who completed the life-extending AD chose comfort care (P = .02), with patients not returning ADs coded as not selecting comfort care. In mITT analyses, median (interquartile range) hospital-free days among 168 patients assigned to comfort ADs and 159 patients assigned to life-extending default ADs were each noninferior to those among 165 patients assigned to standard ADs (standard AD: 486 [306-717] days; comfort AD: 554 [296-833] days; rate ratio, 1.05; 95% CI, 0.90-1.23; P < .001; life-extending AD: 550 [325-783] days; rate ratio, 1.03; 95% CI, 0.88-1.20; P < .001). There were no differences among groups in other secondary outcomes.
Conclusions and Relevance
In this randomized clinical trial, default options in ADs altered the choices seriously ill patients made regarding their future care without changing clinical outcomes.
Trial Registration
ClinicalTrials.gov Identifier: NCT02017548
... Minerva anestesiologica april 2019 off between the right to self-determination, including the proportionality of care (i.e. the right not to suffer hopelessly invoked by Pope Francis in the message to World Medical association on the issues of end-of-life) and euthanasia, thus eliminating that grey area ethically intolerable in a civil society. 18,19 actually, if the law had been promulgated previously, it would have certainly allowed a different ending to important legal cases that in recent years influenced public opinion and political debate in italy (see Welby, englaro 12 and DJ Fabo). in conclusion, even taking for granted that ethical discussions should never stop, a legislative regulation to end-of-life is the starting point from which the awareness and education of both health-care professionals and citizens can be further enhanced. this legislation is bound to impact heavily on clinical practice by modifying many decision-making processes and clarifying the doctor-patient relationship 20 in cases when the therapeutic practices implemented are not able to produce positive outcomes. ...
... in clinical practice, however, many studies have shown that very few patients drew up an aDs document before the icU admission; 20 when available, aDs do not guarantee consistency between received care and patients' wishes, [21][22][23][24] having little influence over the decision to limit treatments, [25][26][27] being static in relation to the dynamic nature of the illness, 28 therefore, with no reference to the current illness, its severity and prognosis, and specific treatments needed. thus, aDs can be partly or entirely disregarded (with the HcP's agreement, if an HcP has been indicated) only if they are clearly inconsistent or not corresponding to the patient's current clinical situation (art. ...
ARTICLE ONLINE FIRST This provisional PDF corresponds to the article as it appeared upon acceptance. A copyedited and fully formatted version will be made available soon. The final version may contain major or minor changes. Subscription: Information about subscribing to Minerva Medica journals is online at: http://www.minervamedica.it/en/how-to-order-journals.php Reprints and permissions: For information about reprints and permissions send an email to: journals.dept@minervamedica.it-journals2.dept@minervamedica.it-journals6.dept@minervamedica.it EDIZIONI MINERVA MEDICA ABSTRACT The Italian Parliament has recently approved a law on informed consent, advance directives and advance care planning. The law also deals with health care proxyand health care decisions for minors and adults who are not able to give consent. The Italian law arrived quite late in comparison with other European countries. After several years of debate on the need to approve such a law, the focus has now shifted to the assessment of the legislative provisions and their impact on clinical practice. In this article, the authors firstly offer an overview of the findings from the empirical research regarding the use of the different legal tools in the field of intensive care medicine; secondly, they present the tools now provided by law no. 219/2017 particularly with regardto the decision-making processes in the Intensive Care Unit (ICU); thirdly, the authors offer a comparison between the new Italian law and other European legal orders, with special referenceto France, Spain, Germany and England. The aim of the article is to assess the degree of innovation of the law vis-à-vis the previous framework.
... 17 The remaining four studies involved secondary analysis of data from the US Health and Retirement Study (HRS). [18][19][20][21] Two found an association between reduced risk of hospital death and having an advance directive 18 or a treatment-limiting advance directive. 19 Since the review by Brinkman-Stoppelenburg et al, attorney, while Nicholas et al 23 found a lower risk of hospital death for people with a treatment-limiting advance directive, among those with severe dementia living in the community and those with normal cognition living in care homes. ...
Objectives To explore whether advance care planning is associated with place of death in England, as well as with sufficiency of support to care for a dying person at home, overall quality of care and pain management.
Methods We undertook secondary analysis of data from the National Survey of Bereaved People, 2013, based on a stratified random sample of 49 607 people selected from 150 111 eligible registered deaths (n=22 661, 46% response rate). The indicator of advance care planning used was having expressed a preference for place of death and this being recorded by healthcare staff. Analysis was conducted using logistic regression models.
Results Decedents with a recorded preference for place of death had significantly greater odds of dying at home rather than in hospital (OR 6.25; 99% CI 5.56 to 7.14) and in a care home rather than in hospital (OR 2.70; 99% CI 2.33 to 3.13). They also had significantly greater odds of receiving sufficient support to be cared for and to die at home, of receiving ‘outstanding’ or ‘excellent’ care, and of having pain relieved ‘completely, all the time’ while being cared for at home.
Conclusions Advance care planning was found to be strongly associated with lower rates of hospital death and a range of quality outcomes. These findings provide support for the emphasis on advance care planning in end of life care policy in England, while also suggesting the need for further research to better understand the mechanisms underlying these relationships.
... consistent with their preferences. [18][19][20][21] However, ADs have known shortcomings, [22][23][24][25][26] and finding a scalable solution for a diverse patient population is challenging. The use of default options has been shown to have large effects in a variety of areas, including the use of opt out versus opt-in framing to increase organ donation and vaccination rates. ...
Introduction Although most seriously ill Americans wish to avoid burdensome and aggressive care at the end of life, such care is often provided unless patients or family members specifically request otherwise. Advance directives (ADs) were created to provide opportunities to set limits on aggressive care near life's end. This study tests the hypothesis that redesigning ADs such that comfort-oriented care is provided as the default, rather than requiring patients to actively choose it, will promote better patient-centred outcomes.
Methods and analysis This multicentre trial randomises seriously ill adults to receive 1 of 3 different ADs: (1) a traditional AD that requires patients to actively choose their goals of care or preferences for specific interventions (eg, feeding tube insertion) or otherwise have their care guided by their surrogates and the prevailing societal default toward aggressive care; (2) an AD that defaults to life-extending care and receipt of life-sustaining interventions, enabling patients to opt out from such care; or (3) an AD that defaults to comfort care, enabling patients to opt into life-extending care. We seek to enrol 270 patients who return complete, legally valid ADs so as to generate sufficient power to detect differences in the primary outcome of hospital-free days (days alive and not in an acute care facility). Secondary outcomes include hospital and intensive care unit admissions, costs of care, hospice usage, decision conflict and satisfaction, quality of life, concordance of preferences with care received and bereavement outcomes for surrogates of patients who die.
Ethics and dissemination This study has been approved by the Institutional Review Boards at all trial centres, and is guided by a data safety and monitoring board and an ethics advisory board. Study results will be disseminated using methods that describe the results in ways that key stakeholders can best understand and implement.
Trial registration number NCT02017548; Pre-results.
... ‘Having one’s affairs in order’ necessarily requires preparation which might also assist people to have other end of life care wishes met. People in the USA who discussed and recorded their preferences in the form of an Advance Directive (a legally-binding document of a person’s preferences for medical care in event that they become incapacitated) were more likely to receive end of life care in accordance with their wishes [15-17]. People with newly diagnosed life-threatening or life-limiting illness often find it difficult to talk about their end of life preferences at this time [18], and people who become ill suddenly may never have the opportunity. ...
Discussing end of life preferences can be beneficial, and it is thought that the best time to have these conversations is usually when people are well. This review aims to establish current evidence for the effectiveness of community-based interventions to encourage people to consider, and to discuss with those closest to them, their preferences for end of life care or what they wish to happen after their death.
A systematic literature review was undertaken. A systematic search was conducted using Scopus and Google, and academic experts were contacted. Studies were included if they evaluated interventions intended to encourage people to discuss their end of life preferences with those closest to them, or to address known barriers to these discussions. Reported outcomes had to relate to attitude or behaviour change in the target group, or target group perceptions of the intervention. Studies were excluded if the intervention targeted only people with a life-limiting illness, or intended specifically to facilitate communication of end of life preferences between patients and healthcare staff. Studies were systematically described and assessed for quality. There was no attempt to combine results of different studies.ResultsThe Scopus search identified 5743 citations, and the Google search identified over 40,000, of which the first 40 pages were scanned. Five studies were included, four identified through the Scopus search and one from a book identified through Google. Three studies reported positive results, two were less positive. A peer education programme on end of life planning for older people, featuring small discussion workshops, was positively appraised by participants. An arts project bringing hospice users and school pupils together appeared to help normalise death for school pupils. A public information 'roadshow' engaged people using an informal questionnaire survey, facilitating conversations between people who participated together. Public lectures by physicians intending to promoting home death as a possibility were unsuccessful in changing attitudes at six months follow-up. A module on end of life planning delivered as part of 'expert patient' education programme on the management of chronic illness was not well received by participants.
Available evidence highlights the importance of actively engaging people rather than passively providing information, and of ensuring an appropriate context for interventions. However, data are limited and there is a need for more research and for sharing of best practice.
We devised IMADOKO as a tool to confirm the current status of terminal cancer patients and are using it in the home care team. In this study, we retrospectively investigated the actual state of end-of-life care to clarify the impact of IMADOKO on decision-making support for terminal cancer patients and their families. The subjects were 64patients (male/female, 38/26) before IMADOKO introduction, and 140 patients (male/female, 78/62) after the introduction, with an average age of 74 years in both cases and the primary lesions were the pancreas, lung, and the gastrointestinal tract. The rate of death at home increased significantly after the introduction of IMADOKO, compared to before. In the IMADOKO introduced group, IMADOKO was used in 108 patients and all their families. The use of IMADOKO for the patient was not related to the location of death, but it significantly improved communication between the patient and family, and between patient/patient's family and medical staff. It was shown that IMADOKO may be useful for decision-making support in choosing a better place of recuperation.
Introduction:
Health care costs remain high at the end of life. It is not known if there is a relationship between advance directive (AD) completion and hospital out-of-pocket costs. This analysis investigated whether AD completion was associated with lower hospital out-of-pocket costs at end of life.
Methods:
We used Health and Retirement Study participants who died between 2000 and 2014 (N = 9228) to examine the association between AD completion status and hospital out-of-pocket spending in the last 2 years of life through the use of a two-part model controlling for socioeconomic status, death-related characteristics and health insurance coverage.
Results:
About 44% of decedents had completed ADs. Having an AD was significantly associated with $673 lower hospital out-of-pocket costs, with a higher magnitude of savings among younger decedents. Decedents who completed ADs 3 months or less before death had higher out-of-pocket costs ($1854 on average) than those who completed ADs more than 3 months before death ($1176 on average).
Conclusions:
AD completion was significantly associated with lower hospital out-of-pocket costs, with greater out-of-pocket savings among younger decedents. Early AD completers experienced lower costs than decedents who completed ADs closer to death.
Objectives
This study aimed to assess the knowledge, attitude and practice (KAP) among community-dwelling adults in Malaysia regarding advance care planning (ACP), and its associated factors.
Design
This cross-sectional study was conducted from July–September 2018.
Setting
This study was conducted at the University Malaya Medical Centre, Kuala Lumpur, Malaysia.
Participants
We recruited community-dwelling adults (ambulatory care patients or their accompanying persons) who were ≥21 years old and able to understand English or Malay. A 1:10 systematic sampling procedure was used. Excluded were community-dwelling adults with intellectual disabilities or non-Malaysian accompanying persons. A trained researcher administered the validated English or Malay Advance Care Planning Questionnaire at baseline and 2 weeks later.
Primary and secondary outcome measures
The primary outcome was the KAP regarding ACP. The secondary outcomes were factors associated with KAP.
Results
A total of 385/393 community-dwelling adults agreed to participate (response rate 98%). Only 3.1% of the community-dwelling adults have heard about ACP and 85.7% of them felt that discussion on ACP was necessary after explanation of the term. The desire to maintain their decision-making ability when seriously ill (94.9%) and reducing family burden (91.6%) were the main motivating factors for ACP. In contrast, resorting to fate (86.5%) and perceived healthy condition (77.0%) were the main reasons against ACP. Overall, 84.4% would consider discussing ACP in the future. Community-dwelling adults who were employed were less likely to know about ACP (OR=0.167, 95% CI 0.050 to 0.559, p=0.004) whereas those with comorbidities were more likely to favour ACP (OR=2.460, 95% CI 1.161 to 5.213, p=0.019). No factor was found to be associated with the practice of ACP.
Conclusions
Despite the lack of awareness regarding ACP, majority of community-dwelling adults in Malaysia had a positive attitude towards ACP and were willing to engage in a discussion regarding ACP after the term ‘ACP’ has been explained to them.
Knowing patient wishes regarding treatment acceptance or refusal is an essential aspect of care strategy, based on the principle of autonomy.
Context
Americans express a strong preference for participating in decisions regarding their medical care, yet they are often unable to participate in decision-making regarding their end-of-life care.
Objective
To examine determinants of end-of-life planning; including, the effect of an individual's ageing and dying process, health status and socio-economic and racial/ethnic background.
Methods
US observational cohort study, using data from the Health and Retirement Study (1992 – 2014) including 37,494 individuals. Random-effects logistic regression analysis was used to examine the relationship between the presence of a living will and a range of individual time-varying characteristics, including time to death, and several time-invariant characteristics.
Results
End-of-life planning depends on several patient characteristics and circumstances, with socio-economic and racial/ethnic background having the largest effects. The probability of having a living rises sharply late in life, as we would expect, and is further modified by the patient's proximity to death. The dying process, exerts a stronger influence on end-of-life planning than does the aging.
Conclusions
Understanding differences that increase end-of-life planning is important to incentivize patients’ participation. Advance planning should be encouraged and accessible to people of all ages as it is inevitable for the provision of patient-centered and cost-effective care.
Background
Advance directives (ADs) have been legally regulated to promote autonomy over health decisions among patients who later lose decision-making capacity.
Aims and objectives
To analyse the differences in clinical practice at end of life among people who had completed an AD versus those who had not.
Methods
Retrospective case–control study (1:2), matched by age, sex, year, cause of death and region of residence. The data sources used were the ADs registry, central registry of insured persons, hospital discharge, pharmacy and billing databases, and the mortality registry. Conditional logistic regression models (crude and adjusted by socioeconomic level) were performed. The outcome variable was the frequency of medical procedures performed during the last year of life.
Results
1723 people with ADs who died in Catalonia during 2014–2015 were matched with 3446 dead controls (without ADs). Thoracentesis was the procedure with the greatest reduction among women with an AD (adjusted OR (OR adj ) 0.54, 95% CI: 0.32 to 0.89) in conjunction with artificial nutrition (OR adj 0.54, 95% CI: 0.31 to 0.95). Intubation was the procedure with the greatest reduction (OR adj 0.56, 95% CI: 0.33 to 0.94) among men. Slight differences could be seen in the case of cancer deaths. There were no relevant differences when adjusting by socioeconomic level.
Conclusions
ADs are an effective tool to adjust the realisation of some procedures at end of life. These results can help better plan for the treatment of patients with ADs, as well as increase the awareness among clinical personnel, families and the general population.
Living wills are designed to ensure that patients’ preferences will be respected at the end of life should they lose capacity to make decisions. However, data on living will use suggest there are barriers to achieving this objective. Moreover, there is evidence that completion of a living will creates a risk of an unwanted outcome: the potential for premature withdrawal of interventions. We suggest a multifaceted approach to improve the ability of living wills to achieve their goals. However, acknowledgment of the current reality should oblige providers offering a living will to their patients to present a balanced view of living wills that includes enumeration of the risk, barriers to achieving the purported benefits, and alternatives to completing a living will, in addition to discussion of the potential benefits. This requires a change in current practice that would encourage shared decision making regarding whether completing a living will or other type of advance directive is desired by the patient and discourage the proliferation of living wills completed without providing these important advantages and disadvantages to the patient.
Background:
Advance care planning (ACP) conversations are an important intervention to provide care consistent with patient goals near the end of life. The emergency department (ED) could serve as an important time and location for these conversations.
Objectives:
To determine the feasibility of an ED-based, brief negotiated interview (BNI) to stimulate ACP conversations among seriously ill older adults.
Methods:
We conducted a pre/postintervention study in the ED of an urban, tertiary care, academic medical center. From November 2017 to May 2019, we prospectively enrolled adults ≥65 years of age with serious illness. Trained clinicians conducted the intervention. We measured patients' ACP engagement at baseline and follow-up (3 ± 1 weeks) and reviewed electronic medical record documentation of ACP (e.g., medical order for life-sustaining treatment [MOLST]).
Results:
We enrolled 51 patients (mean age = 71; SD 12), 41% were female, and 51% of patients had metastatic cancer. Median duration of the intervention was 11.8 minutes; few (6%) of the interventions were interrupted. We completed follow-up for 61% of participants. Patients' self-reported ACP engagement increased from 3.0 to 3.7 out of 5 after the intervention (p < 0.01). Electronic documentation of health care proxy forms increased (75%-94%, n = 48) as did MOLST (0%-19%, n = 48) during the six months after the ED visit.
Conclusion:
A novel, ED-based, BNI intervention to stimulate ACP conversations for seriously ill older adults is feasible and may improve ACP engagement and documentation.
Objectives: To determine the frequency of advance directives or
directives disclosed by healthcare agents and their influence on
decisions to withdraw/withhold life-sustaining care in neurocritically
ill adults.
Data Sources: PubMed, Embase, and Cochrane databases.
Study Selection: Screening was performed using predefined search terms to identify studies describing directives of neurocritically
ill patients from 2000 to 2019. The review was registered prior to the screening process (International Prospective Register of Systematic Reviews [PROSPERO]-Identification number 149185).
Data Extraction: Data were collected using standardized forms. Primary outcomes were the frequency of directives and associated
withholding/withdrawal of life-sustaining care.
Data Synthesis: Out of 721 articles, 25 studies were included representing 35,717 patients. The number of studies and cohort sizes increased over time. A median of 39% (interquartile range, 14–72%) of patients had directives and/or healthcare agents. The presence of directives was described in patients with stroke, status epilepticus, neurodegenerative disorders, neurotrauma, and neoplasms, with stroke patients representing the largest subgroup. Directives were more frequent among patients with neurodegenerative disorders compared with patients with other illnesses (p = 0.043). In reference to directives, care was adapted in 71% of European, 50% of Asian, and 42% of American studies, and was withheld or withdrawn more frequently over time with a median of 58% (interquartile range, 39–89%). Physicians withheld resuscitation in reference to directives in a median of 24% (interquartile range, 22–70%).
Conclusions: Studies regarding the use and translation of directives
in neurocritically ill patients are increasing. In reference to directives, care was adapted in up to 71%, withheld or withdrawn in 58%, and resuscitation was withheld in every fourth patient, but the quality of evidence regarding their effects on critical care remains weak and the risk of bias high. The limited number of patients having directives is worrisome and studies aiming to increase the use and translation of directives are scarce. Efforts need to be made to increase the perception, use, and translation of directives of the neurocritically ill.
Context:
Advance care planning (ACP) documentation needs to be available at the point of care to guide and inform medical treatment decision-making.
Objective:
To examine concordance between self-reported completion of ACP documentation and self-reported storage of the documentation at the person's current point of care with the availability of the documentation in that person's health record.
Methods:
A national multicenter audit of health records and a self-report survey of eligible audit participants in 51 Australian health and residential aged care services. The audit assessed availability of ACP documentation in the health record, whereas the survey assessed self-reported completion and storage of the ACP documentation at the person's current place of care. To ascertain concordance, survey and audit data were cross-tabulated and concordance rates and kappa statistics were calculated overall and by health care sector and ACP documentation type.
Results:
The audit included 2285 people, of whom 1082 were eligible for the survey. Of 507 who completed the survey (response rate = 47%), 272 (54%) reported completing ACP documentation, of whom 130 (48%) had documentation identified in the audit. Conversely, 39 of 235 people (17%) who reported not completing ACP documentation had documentation identified (concordance rate = 64%; κ = 0.303, P < .001). The concordance rate increased to 79% when self-reported storage of ACP documentation at the person's current point of care was compared with the existence of the document in their health record (κ = 0.510, P < .001). Concordance varied by health care setting and type of ACP documentation.
Conclusion:
Discrepancies exist between self-reported completion of ACP documentation and the presence of these documents in the health records of older adults, representing a significant patient safety issue. Public education campaigns and improvements to systems for document storage and accessibility are required to support person-centered medical and end-of-life care.
Background::
Advance directives are statements that allow a person to express his or her wishes for medical treatment in advance of needing it or to appoint someone else if they are unable to do so.
Objectives::
To estimate the prevalence of decedents having a documented advance directive (AD) and a signed enduring power of attorney (SPoA) and to determine the degrees to which characteristics of decedents and their informant and the care the decedent received were predictive of the decedents having a documented AD and a SPoA.
Methods::
A population-based mortality follow-back survey was conducted in Nova Scotia, Canada. Informants who were knowledgeable of a decedents' death were invited to participate in a telephone interview based on the After-Death Bereaved Family Member Interview. Regression analyses were used to assess factors that were predictive of having an AD or SPoA.
Results::
Overall, 56.3% of decedents had a documented AD, and 67.6% had an SPoA. Significant predictors of a decedent having a documented AD were their age, where they received the majority of their end-of-life care, whether they received specialized palliative care, whether they were aware they were dying, and the informant's age. Significant factors in predicting whether a person had a SPoA were whether the decedent received specialized palliative care, where they received the majority of their care, and the age and education level of their informant.
Conclusion::
These results may be used to better target and tailor future efforts to promote use of AD and SPoA.
Background
Little is known about doctors’ decision‐making patterns when using Advance Care Directives (ACDs) particularly for older patients in Australia and New Zealand.
Aims
To determine the level of agreement amongst Australian and New Zealand doctors’ decisions when using ACDs to guide treatment decisions for older patients. To evaluate factors that may affect decision‐making including doctors’ demographics, vignette complexity and ACD content.
Methods
In December 2016 to January 2017 a survey was distributed to doctors working within one tertiary hospital network in Melbourne and to doctors registered with the Australian and New Zealand Society of Geriatric Medicine. The survey comprised of 3 vignettes (1, 2, 3) presented with de‐identified versions of genuine ACDs (A and B) volunteered by community members via a tertiary hospital ACD service.
Results
560 doctors submitted completed surveys. The level of agreement between doctors when using ACDs varied by vignette complexity, ACD content, doctor speciality (p = 0.006 vignette 1 ACD A, p = 0.04 vignette 1 ACD B, p = 0.04 vignette 2 ACD A) and doctor seniority (p = 0.04 vignette 1 ACD A, p < 0.0001 vignette 2 ACD A). Australian and New Zealand doctors are infrequently exposed to ACDs in their work, 30% did not know the legal status of ACDs and majority of the cohort requested more education on ACDs.
Conclusion
Despite the presence of an ACD, the level of agreement on treatment decisions for older patients when using ACDs varies by vignette complexity, ACD content, speciality and seniority of doctors.
This article is protected by copyright. All rights reserved.
OBJECTIVES
To comprehensively assess the effect of a living will on end‐of‐life care.
DESIGN
Systematic review with narrative analysis following Preferred Reporting Items for Systematic Reviews and Meta‐Analyses methodology.
PARTICIPANTS
All interventional and observational studies were included, excepting those with fictive cases. Included studies were conducted in adults with and without living wills, excluding individuals with specific psychiatric living wills.
MEASUREMENTS
Two authors independently extracted study and participant characteristics and outcomes related to end‐of‐life care (place of death, hospitalization and intensive care unit management, life‐sustaining treatments, restricted care). Risk of bias was assessed using the Risk Of Bias In Non‐randomized Studies of Interventions tool.
RESULTS
From 7,596 records identified, 28 observational studies were included, 19 conducted in the United States, 7 in Europe, and 1 each in Canada and Australia. Place of death was assessed in 14 studies, life‐sustaining treatments in 13, decision for restricted care in 12, and hospitalization in 8. Risk of bias was serious for 26 studies and moderate for 2. Twenty‐one studies reported significantly less medical management for individuals with a living will, 3 reported more medical management, and the difference was not significant in 37.
CONCLUSION
Methodological quality of included studies was insufficient to offer reliable results. The effect of living wills appears limited in view of the importance and direction of potential biases. Further studies including larger populations, considering main confounding factors, and documenting the real presence of a living will in medical records are necessary to reach stronger conclusions on the effect of living wills on end‐of‐life care.
Context:
Research has revealed racial disparities in advance care planning and intensity of end-of-life care. Studies of the relationship between advance care planning and sadness and anxiety at the end-of-life are inconclusive.
Objective:
To determine the extent to which the relationship between advance care planning and sadness and anxiety at the end-of-life differs by race.
Methods:
Study analyzes data from 315 Medicare beneficiaries from the 2011-2016 National Health and Aging Trends Study. Caregiver-assessed sadness/anxiety at decedent's end of life was categorized as none, managed needs, and unmanaged needs. We used multinomial logistic regression and calculated relative risk and predicted probability of reporting sadness/anxiety by race and advance care planning status, controlling for demographic and health characteristics.
Results:
Among non-Hispanic black/African-Americans who died, end-of-life discussions and having a healthcare proxy increased the predicted probability of caregivers reporting unmanaged needs related to sadness/anxiety by factors of 2.6 and 3.5, respectively (discussions: from 15% to 39%, p=.03; healthcare proxy: from 12% to 42% p=.008). In contrast, among non-Hispanic white decedents, end-of-life discussions and naming a healthcare proxy was not associated with caregivers reporting unmanaged needs related to sadness/anxiety.
Conclusion:
Advance care planning may not work the same way for black and white individuals. End-of-life discussions and naming a healthcare proxy are potentially harmful to dying black patients' mental health. This finding suggests a need for additional research to understand why caregivers report unmanaged sadness/anxiety for dying black patients who engaged in advance care planning, and increased attention to these patients' mental health at the end-of-life.
Background. Many people recognize the potential benefits of advance directives (ADs), yet few actually complete them. It is unknown whether an active choice intervention influences AD completion. Methods. New employees were randomized to an active choice intervention (n = 642) or usual care (n = 637). The active choice intervention asked employees to complete an AD, confirm prior AD completion, or fill out a declination form. In usual care, participants could complete an AD, confirm prior completion, or skip the task. We used multivariable logistic regression to assess the relationship between the intervention arm and both AD completion online and the return of a signed AD by mail, as well as assess interactions between intervention group and age, gender, race, and clinical degree status. Results. Participants assigned to the active choice intervention more commonly completed ADs online (35.1% v. 20.4%, P < 0.001) (odds ratio [OR] = 2.10; 95% confidence interval [CI] = 1.63–2.71; number needed to treat = 6.8) and returned signed ADs by mail (7.8% v. 3.9%, P = 0.003; number needed to treat = 25.6). The effect of the intervention was significantly greater among men (OR = 4.13; 95% CI = 2.32–7.35) than among women (OR = 1.74; 95% CI = 1.30–2.32) (interaction P value < 0.001). Responses to all eight choices made in the ADs were similar between groups (all P > 0.10). Limitations. A young and healthy participant may not benefit from AD completion as an older or seriously ill patient would. Conclusions. The active choice intervention significantly increased the proportion of participants completing an AD without changing the choices in ADs. This relationship was especially strong among men and may be a useful method to increase AD completion rates without altering choices.
Efforts to promote the completion of advance directives implicitly assume that completion rates of these documents, which help ensure care consistent with people's preferences in the event of incapacity, are undesirably low. However, data regarding completion of advance directives in the United States are inconsistent and of variable quality.We systematically reviewed studies published in the period 2011-16 to determine the proportion of US adults with a completed living will, health care power of attorney, or both. Among the 795,909 people in the 150 studies we analyzed, 36.7 percent had completed an advance directive, including 29.3 percent with living wills. These proportions were similar across the years reviewed. Similar proportions of patients with chronic illnesses (38.2 percent) and healthy adults (32.7 percent) had completed advance directives. The findings provide benchmarks for gauging future policies and practices designed to motivate completion of advance directives, particularly among those people most likely to benefit from having these documents on record. © 2017 Project HOPE-The People-to-People Health Foundation, Inc.
Lesbian, gay, bisexual, transgender, and queer (LGBTQ) persons often receive end-of-life care incongruent with wishes. Evidence with heterosexual samples supports associations among end-of-life documentation (do not resuscitate [DNR] orders, durable power of attorney for health care orders [DPOAH], living wills [LW]), and care consistent with wishes. However, little is known about the knowledge, attitudes, and willingness regarding utilization of these documents among LGBTQ persons. Of 107 participants, most had heard of each document (95% DNR, 91% DPOAH, 97% LW), but had not procured them (26% DNR, 50% DPOAH, 51% LW). Answers above 4 on a 5-point Likert scale indicated willingness to pursue these documents and belief documents would be enforced. However, approximately one-third of respondents believed documents would be enforced more for heterosexual persons than themselves. This result indicates sexuality or gender minority-related stigma may be a barrier to document utilization. Future research, policies, and guidelines should address these concerns.
Background and objectives:
Little is known about the relation between the content of advance directives and downstream treatment decisions among patients receiving maintenance dialysis. In this study, we determined the prevalence of advance directives specifying treatment limitations and/or surrogate decision-makers in the last year of life and their association with end-of-life care among nursing home residents.
Design, setting, participants, & measurements:
Using national data from 2006 to 2007, we compared the content of advance directives among 30,716 nursing home residents receiving dialysis to 30,825 nursing home residents with other serious illnesses during the year before death. Among patients receiving dialysis, we linked the content of advance directives to Medicare claims to ascertain site of death and treatment intensity in the last month of life.
Results:
In the last year of life, 36% of nursing home residents receiving dialysis had a treatment-limiting directive, 22% had a surrogate decision-maker, and 13% had both in adjusted analyses. These estimates were 13%-27%, 5%-11%, and 6%-13% lower, respectively, than for decedents with other serious illnesses. For patients receiving dialysis who had both a treatment-limiting directive and surrogate decision-maker, the adjusted frequency of hospitalization, intensive care unit admission, intensive procedures, and inpatient death were lower by 13%, 17%, 13%, and 14%, respectively, and hospice use and dialysis discontinuation were 5% and 7% higher compared with patients receiving dialysis lacking both components.
Conclusions:
Among nursing home residents receiving dialysis, treatment-limiting directives and surrogates were associated with fewer intensive interventions and inpatient deaths, but were in place much less often than for nursing home residents with other serious illnesses.
PurposeThe purposes of the study were to assess awareness and prevalence of advance directives (ADs) among patients with advanced cancer undergoing active outpatient care and to determine factors associated with AD completion before and after the diagnosis of cancer. Methods
Patients with advanced solid tumor malignancy receiving treatment at the Chemotherapy Day Unit were approached for recruitment. They completed an onsite questionnaire about completion and timing of ADs, demographic information, and perceived health; a review of their medical records was conducted to document their cancer care and co-morbidities. Multinomial logistic regression analysis identified factors associated with the timing of AD completion (pre-cancer, post-cancer, or not at all). ResultsTwo hundred patients were enrolled, with 193 surveys available for analysis. ADs were completed in 55 % (106/193) of patients, including a living will in 33 % (63/193), a power of attorney in 49 % (95/193), and a do-not-resuscitate (DNR) designation in 18 % (35/193). Most patients (53 %) had completed an AD before being diagnosed with cancer. Higher income (p = 0.02) and age (p = 0.004) were associated with AD completion pre-cancer diagnosis; discussion of end-of-life care (p = 0.02) and palliative care referral (p < 0.0001) were associated with AD completion post-cancer diagnosis. Conclusions
This study demonstrates that different factors may influence the completion of ADs before and after a diagnosis of cancer and highlights the potential for early palliative care to impact the completion of ADs in patients with advanced cancer who are undergoing active cancer treatment.
Background:
Evidence suggests that advance directives may improve end-of-life care among seriously ill patients, but improving completion rates remains a challenge.
Objective:
This study tested the influence of increasing the number of options for completing an advance directive among seriously ill patients.
Methodology:
Outpatients ( N = 316) receiving hemodialysis across 15 dialysis centers in the Philadelphia region between July 2014 and July 2015 were randomized to receive either the option to complete a brief advance directive form or expanded options including a brief, expanded, or comprehensive form. Patients in both groups could decline to complete an advance directive or take their selected version home. The primary outcome was a returned, completed advance directive. Secondary outcomes included whether patients wanted to complete an advance directive, decision satisfaction, quality of life at 3 months, and patient factors associated with advance directive completion.
Results:
Although offering more advance directive options was not significantly associated with increased rates of completion (13.1% in the standard group v. 12.2% in the expanded group, P = 0.80), it did significantly increase the proportion of patients who wanted to complete an advance directive and took one home (71.9% in standard v. 85.3% in expanded, P = 0.004). There was no difference in satisfaction ( P = 0.65) or change in quality of life between groups ( P = 0.63). A higher baseline quality of life was independently associated with advance directive completion ( P = 0.006).
Conclusions and relevance:
These results suggest that although an expanded choice set may initially nudge patients toward completing advance directives without restricting choice, increasing actual completion requires additional interventions that overcome downstream barriers.
Background:
The Centers for Medicare & Medicaid Services (CMS) recently instituted physician reimbursements for advance care planning (ACP) discussions with patients.
Aim:
To measure public support for similar programs.
Design:
Cross-sectional online and in-person surveys.
Setting/participants:
English-speaking adults recruited at public parks in Philadelphia, Pennsylvania, from July to August 2013 and online through survey sampling international Web-based recruitment platform in July 2015. Participants indicated support for 6 programs designed to increase advance directive (AD) completion or ACP discussion using 5-point Likert scales. Participants also indicated how much money (US$0-US$1000) was appropriate to incentivize such behaviors, compared to smoking cessation or colonoscopy screening.
Results:
We recruited 883 participants: 503 online and 380 in-person. The status quo of no systematic approach to motivate AD completion was supported by 67.0% of participants (63.9%-70.1%). The most popular programs were paying patients to complete ADs (58.0%; 54.5%-61.2%) and requiring patients to complete ADs or declination forms for health insurance (54.1%; 50.8%-57.4%). Participants more commonly supported paying patients to complete ADs than paying physicians whose patients complete ADs (22.6%; 19.8%-25.4%) or paying physicians who document ACP discussions (19.1%; 16.5%-21.7%; both P < .001). Participants supported smaller payments for AD completion and ACP than for obtaining screening colonoscopies or stopping smoking.
Conclusions:
Americans view payments for AD completion or ACP more skeptically than for other health behaviors and prefer that such payments go to patients rather than physicians. The current CMS policy of reimbursing physicians for ACP conversations with patients was the least preferred of the programs evaluated.
Purpose:
Many cancer patients do not have advance directives (ADs), which may lead to unwanted excessive or aggressive care when patients have lost decision-making capacity. The aim of this study was to investigate knowledge and attitudes of approving ADs and explore factors associated with willing to designate ADs among cancer patients in China.
Methods:
We conducted semi-structured interview method investigating 753 in-patients with cancer in two cancer centers.
Results:
Of those subjects, none of the cancer patients had an AD. Only 22.4 % (118 of 526) approved ADs. Comparing with the disapproved ADs group, the approved ADs group were more likely to discuss the AD with oncologist or nurse (χ (2) = 180.4, p < 0.001) in the cancer center (χ (2) = 244.1, p < 0.001), and they chose more comfort care (χ (2) = 18.8, p < 0.001). Most of cancer patients in the two groups wanted to die at home (72.8 %, 73.7 %, respectively). The older patients (OR, 1.04, 95 % CI, 1.02-1.07, p = 0.001), female (OR, 0.55, 95 % CI, 0.35-0.88, p = 0.013), with higher education levels (OR, 3.38, 95 % CI, 1.92-5.96, p < 0.001), with religious beliefs (OR, 2.91, 95 % CI, 1.71-4.94, p < 0.001), and with higher scores of ECOG (OR, 1.46, 95 % CI, 1.17-1.82, p = 0.001) were associated with desiring for ADs.
Conclusions:
Our findings indicate that there was a dearth of knowledge and different attitudes toward approving ADs among cancer patients, and some factors of demographic and clinical characteristics influenced their willing to designate ADs. This research highlights the importance of propagandizing the ADs to the public, especially to the patients, and further discussing with them when the time is ripe.
Objectives: Advance care planning (ACP) is the process of discussing the wishes of people regarding end-of-life care and other related medical decisions. The aims of this study were to develop an ACP booklet in Taiwan and to identify relevant ACP issues. Materials and methods: A three-stage research design was used. First, potential items were collected from the literature and were modified based on clinical situations and Taiwanese culture. Next, experts in palliative care evaluated the content validity of the items. Finally, healthy participants reviewed the ACP booklet and then discussed their experiences in focus groups. Results: The significant issues identified discussing ACP included life story, current health status and habits, life-threatening conditions and suffering, medical decisions about the end-of-life care, and a number of other items. The provision of comprehensive information about the pros and cons of specific medical procedures and of palliative care was identified as important. Conclusion: An ACP booklet facilitates discussion and decision-making related to end-of-life care. Furthermore, the present findings indicated that, when carrying out an ACP discussion, not only are the preferences and values of people important, but also factors related to their culture.
During the last few decades, patients' rights have been reinforced in many countries by acts of law. Measures now include health care proxies to uphold the doctor-patient relationship and advance directives for end-of-life patients. These could be relevant tools as early as the initial diagnosis of haematological malignancies because of the uncertain disease course. The aim of this research was to assess the factors associated with the designation of a proxy and writing advance directives by patients in a haematology department in France.
After a specific programme to encourage discussions about end-of-life preferences, we conducted a mixed-methods study comprising retrospective analysis of a random sample of 200 patients' medical records, crossed with a qualitative analysis of the content of advance directives. Statistical analysis was performed by the RKward V 0.6.1 software with 0.05 denoting significance. The study was performed and presented in accordance with the STROBE guidelines. A thematic analysis of the advance directives was performed by two researchers.
A total of 197 medical records were evaluable. The mean age of the patients was 66 years (range: 18-91). Nearly 2/3 of them (64.5%) designated a proxy, 6.1% wrote advance directives, and 8.1% and 4.6% expressed a wish to meet a religious representative or a volunteer, respectively. The 2-year survival rate was 78.4% [95%CI: 68.2-90.2]. Patients who wrote advance directives were statistically older (p <0.00025). Patients who wrote an advance directive were more likely to have expressed a wish to meet a religious representative (p <0.001) or a volunteer (p = 0.003). Marital status was a significant factor in appointing a proxy (p = 0.04).
To the best of our knowledge, this is the first paper to identify influencing factors for proxies and advance directives in a homogenous population of patients with haematological malignancies. Most patients chose a proxy. However, despite several training programmes for the carers and a care planning programme, few patients wrote advance directives. Our findings suggest that influencing factors are advanced age and a wish to see a religious representative. This study highlights the importance of oral communication about end-of-life issues between carers, patients and their relatives.
O conceito de diretivas antecipadas de vontade emergiu em resposta ao avanço tecnológico e ao tratamento médico agressivo empregados em situações ambíguas, como no caso de um prognóstico ruim. O cerne do presente documento é o exercício da autonomia do paciente. A Resolução 1.995/12 do Conselho Federal de Medicina estabelece os critérios para que qualquer pessoa - desde que maior de idade e plenamente consciente - possa definir junto ao seu médico quais os limites terapêuticos na fase final de sua vida. O documento é facultativo e poderá ser elaborado em qualquer momento da vida e da mesma maneira modificado ou revogado a qualquer tempo. Este artigo tem por propósito discorrer sobre seus benefícios, obstáculos e limites, considerando o vasto número de pesquisas realizadas sobre o tema e as experiências positivas e negativas de outros países no intuito de contribuir para a discussão de sua efetiva utilização no Brasil.
Hospital readmission from the nursing home is often a concerning development for nursing home residents who have recently been dismissed from the hospital. Clinicians and family often consider the potential prognosis when residents return to the hospital. The objective was to determine the relationship between two-year mortality and 30-day hospital readmission status from the nursing home.
Objectives:
To examine the relationship between Physician Orders for Life-Sustaining Treatment (POLST) for Scope of Treatment and setting of care at time of death.
Design:
Cross-sectional.
Setting:
Oregon in 2010 and 2011.
Participants:
People who died of natural causes.
Measurements:
Oregon death records containing cause and location of death were matched with POLST orders for people with a POLST form in the Oregon POLST registry. Logistic regression was used to measure the association between POLST orders and location of death.
Results:
Of 58,000 decedents, 17,902 (30.9%) had a POLST form in the registry. Their orders for Scope of Treatment were comfort measure only, 11,836 (66.1%); limited interventions, 4,787 (26.7%); and full treatment, 1,153 (6.4%). Comfort measures only (CMO) orders advise avoiding hospitalization unless comfort cannot be achieved in the current setting; 6.4% of participants with POLST CMO orders died in the hospital, compared with 44.2% of those with orders for full treatment and 34.2% for those with no POLST form in the registry. In the logistic regression, the odds of dying in the hospital of those with an order for limited interventions was 3.97 times as great (95% CI = 3.59-4.39) as of those with a CMO order, and the odds of those with an order for full treatment was 9.66 times as great (95% CI = 8.39-11.13).
Conclusions:
The association with numbers of deaths in the hospital suggests that end-of-life preferences of people who wish to avoid hospitalization as documented in POLST orders are honored.
Background:
Advance care planning is the process of discussing and recording patient preferences concerning goals of care for patients who may lose capacity or communication ability in the future. Advance care planning could potentially improve end-of-life care, but the methods/tools used are varied and of uncertain benefit. Outcome measures used in existing studies are highly variable.
Aim:
To present an overview of studies on the effects of advance care planning and gain insight in the effectiveness of different types of advance care planning.
Design:
Systematic review.
Data sources:
We systematically searched PubMed, EMBASE and PsycINFO databases for experimental and observational studies on the effects of advance care planning published in 2000-2012.
Results:
The search yielded 3571 papers, of which 113 were relevant for this review. For each study, the level of evidence was graded. Most studies were observational (95%), originated from the United States (81%) and were performed in hospitals (49%) or nursing homes (32%). Do-not-resuscitate orders (39%) and written advance directives (34%) were most often studied. Advance care planning was often found to decrease life-sustaining treatment, increase use of hospice and palliative care and prevent hospitalisation. Complex advance care planning interventions seem to increase compliance with patients' end-of-life wishes.
Conclusion:
The effects of different types of advance care planning have been studied in various settings and populations using different outcome measures. There is evidence that advance care planning positively impacts the quality of end-of-life care. Complex advance care planning interventions may be more effective in meeting patients' preferences than written documents alone. More studies are needed with an experimental design, in different settings, including the community.
Living wills are a form of advance directives that help to protect patient autonomy. They are frequently encountered in the conduct of medicine. Because of their impact on care, it is important to understand the adequacy of current medical school training in the preparation of physicians to interpret these directives.
Between April and August 2011 of third and fourth year medical students participated in an internet survey involving the interpretation of living wills. The survey presented a standard living will as a "stand-alone," a standard living will with the addition an emergent clinical scenario and then variations of the standard living will that included a code status designation ("DNR," "Full Code," or "Comfort Care"). For each version/ scenario, respondents were asked to assign a code status and choose interventions based on the cases presented.
Four hundred twenty-five students from medical schools throughout the country responded. The majority indicated they had received some form of advance directive training and understood the concept of code status and the term "DNR." Based on a stand-alone document, 15% of respondents correctly denoted "full code" as the appropriate code status; adding a clinical scenario yielded negligible improvement. When a code designation was added to the living will, correct code status responses ranged from 68% to 93%, whereas correct treatment decisions ranged from 18% to 78%. Previous training in advance directives had no impact on these results.
Our data indicate that the majority of students failed to understand the key elements of a living will; adding a code status designations improved correct responses with the exception of the term DNR. Misunderstanding of advance directives is a nationwide problem and jeopardizes patient safety. Medical School ethics curricula need to be improved to ensure competency with respect to understanding advance directives.
Objective
To systematically review the efficacy of advance care planning (ACP) interventions in different adult patient populations.
Design
Systematic review and meta-analyses.
Data Sources
Medline/PubMed, Cochrane Central Register of Controlled Trials (1966 to September 2013), and reference lists.
Study Selection
Randomized controlled trials that describe original data on the efficacy of ACP interventions in adult populations and were written in English.
Data Extraction and Synthesis
Fifty-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 Measures
Primary 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.
Results
Interventions 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.
Conclusions
ACP 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.
The provision of comprehensive cancer care in an increasingly complex landscape necessitates that oncology providers familiarize themselves with the application of palliative care. Palliative care is a learnable skill. Recent endeavors in this arena have demonstrated that providing palliative care is part and parcel with providing compassionate and high-quality cancer care, specifically as it pertains to physical and emotional outcomes for patients and their caregivers alike. The basic tenets of providing palliative care emphasize: frequent and honest communication, routine and systematic symptom assessment, integration of spiritual assessments, and early integration of specialized hospice and palliative care resources as a patient's circumstances evolve. This article will endeavor to review and synthesize recent developments in the palliative care literature, specifically as they pertain to the oncologist as a primary palliative care provider.
Objectives: This study tests the efficacy of a preadmission, educational interview on advance directives, in this case, health care proxies (HCPs) offered to elective, orthopedic patients. Method: Using a quasi-experimental design, participants (n = 54) are assigned to either treatment group (who received the educational interview, con- ducted by a social worker, over and above the federally mandated written information on HCPs) or comparison group (who received the written information only). Results: Logistic regression analysis indicates there is a sta- tistically significantly higher probability that a patient would sign an HCP if assigned to the treatment group than if assigned to the comparison condition. Conclusion: Benefits of educating patients about HCPs as part of routine social work practice are outlined.
This study examines the potential social diffusion effects of the Respecting Choices advance care planning program administered in La Crosse, Wisconsin, since 1991. The program produces educational materials for patients, trains facilitators to help patients prepare for end of life, and ensures that advance directives are connected to patients’ medical records. Using data from a survey of more than 5,000 White Wisconsin high school graduates in their mid-60s, we found that participants who were living in the La Crosse area were significantly less likely than their peers living elsewhere to have executed a living will or appointed a health care power of attorney. This pattern may reflect psychological reactance, where individuals reject a message or lesson when they perceive compliance as a threat to their autonomy. There was no evidence of social diffusion effects; participants who lived in the La Crosse region themselves or who had social network members residing in the area were no more likely than those with no known ties to the region to have engaged in advance care planning. Future studies should explore the processes through which individuals learn and share with others their knowledge of advance care planning.
Although decisions regarding end-of-life care are personal and important, they may be influenced by the ways in which options are presented. To test this hypothesis, we randomly assigned 132 seriously ill patients to complete one of three types of advance directives. Two types had end-of-life care options already checked-a default choice-but one of these favored comfort-oriented care, and the other, life-extending care. The third type was a standard advance directive with no options checked. We found that most patients preferred comfort-oriented care, but the defaults influenced those choices. For example, 77 percent of patients in the comfort-oriented group retained that choice, while 43 percent of those in the life-extending group rejected the default choice and selected comfort-oriented care instead. Among the standard advance directive group, 61 percent of patients selected comfort-oriented care. Our findings suggest that patients may not hold deep-seated preferences regarding end-of-life care. The findings provide motivation for future research examining whether using default options in advance directives may improve important outcomes, including patients' receipt of wanted and unwanted services, resource use, survival, and quality of life.
Purpose:
The purpose of this study was to investigate Korean attitudes toward advance directives (ADs) among cancer patients, family caregivers, oncologists, and the general public.
Methods:
A multicenter survey study explored the attitudes of participants to ADs, and hospice-palliative care (HPC) was conducted. A total of 1,242 cancer patients, 1,289 family caregivers, 303 oncologists, and 1,006 members of the general public participated in the survey.
Results:
The majority of patients, family caregivers, oncologists, and general public agreed with the necessity of ADs. However, oncologists regard "when became terminal status" as an optimal timing for completion of ADs (52.2 %), while other groups regard earlier periods as it. More than 95 % oncologist answered that cardiopulmonary resuscitation and mechanical ventilator are necessity items for ADs form, while around 70 % of other groups answered so. Multivariate analysis revealed that several factors including agreement with terminal disclosures and a positive attitude toward HPC were independently associated with necessity of ADs.
Conclusions:
We found that attitudes toward ADs among cancer patients, family caregivers, oncologists, and the general public were significantly different. Our study also suggests that favorable attitudes toward comfort end-of-life care and HPC are keys that influence the perceived need for ADs.
Rationale: Living wills often accompany patients who present for emergent care. Despite evidence suggesting that misunderstanding could lead to inappropriate care, few studies have assessed underlying assumptions about these instructions and how care may be affected.
Objectives: To determine if the living will implies a code status before clinical interaction and to assess how the term "do-not-resuscitate" is defined in terms of patient care.
Methods: An intranet survey was administered to clinical departments at a 350-bed acute care and level II trauma center. There were 585 potential respondents including physicians, nurses, and first-responders. No age or experience restrictions or exclusions were applied, given that emergent care presumes neither minimum age nor previous experience. The survey presented a fictitious living will refusing lifesaving interventions and prompted respondents to assign a code status (do-not-resuscitate or full code) and define the level of care associated with the former. Clinical information was withheld to isolate responses to the advance directive.
Results: Between 440 and 452 responses were made. Most were female (64%) and nurses (62%) with an average age of 38.2 years (range 18-68) and an average duration of employment of 13.3 years (range 0.3-40.9). Seventy-nine percent (347/440) indicated do-not-resuscitate and 70% (317/452) construed do-not-resuscitate with "comfort care/end-of-life care." Occupation hierarchy (pre-hospital, nurse, physician) was related to the likelihood of choosing full code or full care (P ≤ 0.001, odds ratios: 4.03 [95% bounds 1.70, 9.55]; 2.19 [95% bounds: 1.04, 4.65], respectively).
Conclusions: A majority of caregivers at a level II trauma center construed a living will with a do-not-resuscitate order which, in turn, was equated with end-of-life care. Such understandings may unnecessarily put patients at risk when presenting for emergent care.
The newly implemented Mental Capacity Act 200524.
Mental Capacity Act 2005. Code of Practice [accessed 25 July 2008]. Available at www.justice.gov.uk/docs/mca-cp.pdf View all references in England and Wales enshrines much of the practice established under case law to safeguard people who lack ability to make specific decisions, enhances personal autonomy and enables people to make advance decisions to refuse treatment. It introduces new proxy-decision-making roles to address health, welfare and financial matters and specialist advocacy for people who do not have family or friends where major health and welfare decisions are to be made. This article outlines the scope of the Mental Capacity Act 200524.
Mental Capacity Act 2005. Code of Practice [accessed 25 July 2008]. Available at www.justice.gov.uk/docs/mca-cp.pdf View all references, considers some of the implications of the Act for social work practitioners around the areas of planning and working with others in new roles, and clarifies some of their responsibilities. The article concludes that the potential for good practice will need to be supported by professional reflection and service monitoring.
The Advance Directives (ADs) have been adopted in many countries to defend patients' autonomy. In Italy, the role of ADs has recently been the subject of heated debate involving political parties and the Roman Catholic Church. In February 2009, the conservative government coalition presented a bill of law on this issue. It has been passed by the Low Chamber and is now being discussed in the Senate. The purpose of the article is to highlight any possible bill's contradiction with Italian Constitution, Italian Code of Medical Ethics (ICME), and Oviedo Convention contents, relevant for intensivists.
Analysis of bill's content in the light of Italian Constitution, ICME, Oviedo Convention articles and in comparison with French legislation regarding end of life (Leonetti law).
In the Authors' point of view the bill's articles -limit the moral and judicial importance of four main issues as informed consent, permanent incapacity, artificial nutrition/hydration, and withdraw/withhold treatments.
In the Authors' opinion the ADs must represent informed preferences made freely by patients within the relationship with their physicians, as part of an advance care planning. When this relationship develops in accordance with the ICME rules, it contains all of the ethical/professional dimensions to legitimate right choices in each case. The law should draw inspiration from ICME principles, assigning them a juridical power, acknowledging their validity in legitimating end-of-life decisions, and defining a framework of juridical legitimacy for these decisions without infringing on patients' right to autonomy with prescriptions on the care.
To evaluate care provided by primary care physicians in community practice to older patients presenting with cognitive impairment and dementia.
Secondary analysis of an intervention study.
Primary care clinics.
101 patients 75 years and older enrolled in the ACOVE-2 study who presented with a new cognitive problem, new dementia, or prevalent dementia.
Patients assessment and management were evaluated from medical record review and caregiver interviews.
Among 34 patients presenting with a new cognitive problem, half received a cognitive assessment comprising of a test of memory and one other cognitive task, 41% were screened for depression and 29% were referred to a consultant. Of the 27 patients with newly diagnosed dementia, 15% received the components of a basic neurological examination, one-fifth received basic laboratory testing and for one third the medical record reflected an attempt to classify the type of dementia. Counseling was under-reported in the medical record compared to the caregiver interview for the 101 patients with dementia, but even the interview revealed that about half or fewer patients received counseling about safety and accident prevention, caregiver support or managing conflicts. Less than 10% were referred to a social worker.
This small but detailed evaluation suggests patients presenting with cognitive problems to primary care physicians do not consistently receive basic diagnosis and management.
ResearchGate has not been able to resolve any references for this publication.