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BMC Cancer Jan 2021In Mainland China, advance directives (ADs) and end-of-life care for patients with tumours, especially patients with brain tumours who may have lost consciousness or the...
BACKGROUND
In Mainland China, advance directives (ADs) and end-of-life care for patients with tumours, especially patients with brain tumours who may have lost consciousness or the ability to speak at the early stage of their illness, have been poorly acknowledged. Thus, this study aimed to clarify the knowledge and preferences of ADs and end-of-life care in patients with brain tumours and to investigate predictors of patient preferences.
METHODS
This was a population-based cross-sectional survey that was conducted via face-to-face interviews. Information on sociodemographic factors, brain tumour illness, knowledge and preferences of the advanced decisions and end-of-life care of the patients was collected.
RESULTS
A total of 88.61% of participants had never heard of ADs, but 65.18% reported that they would like to make ADs. Knowledge of ADs, receiving surgical treatment or radiotherapy, being younger than 70 years old, being male, having educational qualifications of college or beyond, being childless, having medical insurance for nonworking or working urban residents and self-paying medical expenses were predictors of preference for making ADs. A total of 79.43% of participants wanted to discuss end-of-life arrangements with medical staff, and 63.29% of participants were willing to receive end-of-life care, even though it would not delay death. A total of 65.82% of patients with brain tumours wanted resuscitation, and as many as 45.45% of the patients thought that they did not need life support if they were in a persistent vegetative state. Brain primary tumours, being younger than 70 years old, male sex, educational qualification of junior middle school or below, having children, having new rural cooperative medical insurance and having medical expenses paid by children or spouses were predictors of choosing appropriate palliative care.
CONCLUSIONS
ADs and end-of-life care have been poorly acknowledged among patients with brain tumours in mainland China. Additional efforts should be encouraged amongst patients with primary brain tumours, those who are undergoing surgery and radiotherapy and those who have low socioeconomic status. A longitudinal and comprehensive study is encouraged to promote disease-specific ADs among Chinese patients with brain tumours.
Topics: Adult; Advance Directives; Aged; Aged, 80 and over; Brain Neoplasms; China; Cross-Sectional Studies; Female; Follow-Up Studies; Health Knowledge, Attitudes, Practice; Humans; Male; Middle Aged; Patient Preference; Prognosis; Surveys and Questionnaires; Terminal Care
PubMed: 33402101
DOI: 10.1186/s12885-020-07775-4 -
JAMA Surgery Oct 2022Advance care planning (ACP) prepares patients and caregivers for medical decision-making, yet it is underused in the perioperative surgical setting, particularly among...
IMPORTANCE
Advance care planning (ACP) prepares patients and caregivers for medical decision-making, yet it is underused in the perioperative surgical setting, particularly among older adults undergoing high-risk procedures who are at risk for postoperative complications. It is unknown what patient factors are associated with perioperative ACP documentation among older surgical patients.
OBJECTIVE
To assess ACP documentation among high-risk patients 65 years and older undergoing elective surgery.
DESIGN, SETTING, AND PARTICIPANTS
In this observational cohort study including 3671 patients 65 years and older undergoing elective surgery at a tertiary academic center in California, electronic health record data were linked to the National Surgical Quality Improvement Project outcomes data and the California statewide death registry. The study was conducted from January 1 to December 31, 2019. Data were analyzed from January to May 2022.
EXPOSURES
Elective surgery requiring an inpatient admission.
MAIN OUTCOMES AND MEASURES
ACP documentation, defined as a discussion regarding goals of care documented in an ACP note, an advance directive, or a physician order for life-sustaining treatment (POLST) form, within 90 days before elective surgery requiring inpatient admission. Multivariate regression was performed to identify factors associated with missing ACP.
RESULTS
Among 3671 patients (median [IQR] age 72 [65-94] years; 1784 [48.6%] female; 401 [10.9%] Asian, 155 [4.2%] Black, 284 [7.7%] Latino/Latina, 2647 [72.1%] White, and 184 [5.0%] of other races or ethnicities, including American Indian or Alaska Native, Native Hawaiian or Pacific Islander, multiple races or ethnicities, other, and unknown or declined to respond, combined owing to small numbers), 539 (14.7%) had ACP documentation in the 90-day presurgery window. Of these 539, 448 (83.1%) had advance directives, and 60 (11.1%) had POLST forms. The 30-day and 1-year mortality were 0.7% (n = 27) and 6.6% (n = 244), respectively. Missing ACP was significantly associated with male sex (adjusted odds ratio [aOR], 1.39; 95% CI, 1.14-1.69) and having a non-English preferred language (aOR, 1.78; 95% CI, 1.18-2.79). Medicare insurance was significantly associated with having ACP (aOR for missing ACP, 0.63; 95% CI, 0.40-0.95).
CONCLUSIONS AND RELEVANCE
In this study, perioperative ACP was uncommon, particularly in men, individuals with a non-English preferred language, and those without Medicare insurance coverage. The perioperative setting may represent a missed opportunity for ACP for older surgical patients. When addressing ACP for surgical patients, particular attention should be paid to overcoming language-related disparities.
Topics: Advance Care Planning; Advance Directives; Aged; Cohort Studies; Documentation; Female; Humans; Male; Medicare; United States
PubMed: 36001323
DOI: 10.1001/jamasurg.2022.3687 -
Revista Brasileira de Enfermagem 2019to explain the approaches and discussions about the Advance Healthcare Directives spread among health professionals, lawyers and society. (Review)
Review
OBJECTIVE
to explain the approaches and discussions about the Advance Healthcare Directives spread among health professionals, lawyers and society.
METHOD
bibliographic search in the databases SciELO, LILACS, BDENF, in Portuguese, carried out from December 2017 to January 2018.
RESULTS
22 articles were considered for analysis with interviews and testimonies of physicians, intensivists and geriatricians, nurses, technicians and Nursing auxiliaries, Medical students, lawyers and Law students.
CONCLUSION
there is a small number of papers on the Advance Healthcare Directives in Brazil, and a wide range of approaches that have not yet been clarified. The theme is not widely spread and little clarified in its essence.
Topics: Advance Directives; Decision Making; Humans; Personal Autonomy; Right to Die
PubMed: 30916293
DOI: 10.1590/0034-7167-2018-0347 -
The Milbank Quarterly Jun 2010The legal tools of health care advance planning have substantially changed since their emergence in the mid-1970s. Thirty years of policy development, primarily at the... (Review)
Review
CONTEXT
The legal tools of health care advance planning have substantially changed since their emergence in the mid-1970s. Thirty years of policy development, primarily at the state legislative level addressing surrogate decision making and advance directives, have resulted in a disjointed policy landscape, yet with important points of convergence evolving over time. An understanding of the evolution of advance care planning policy has important implications for policy at both the state and federal levels.
METHODS
This article is a longitudinal statutory and literature review of health care advance planning from its origins to the present.
FINDINGS
While considerable variability across the states still remains, changes in law and policy over time suggest a gradual paradigm shift from what is described as a "legal transactional approach" to a "communications approach," the most recent extension of which is the emergence of Physician Orders for Life-Sustaining Treatment, or POLST. The communications approach helps translate patients' goals into visible and portable medical orders.
CONCLUSIONS
States are likely to continue gradually moving away from a legal transactional mode of advance planning toward a communications model, albeit with challenges to authentic and reliable communication that accurately translates patients' wishes into the care they receive. In the meantime, the states and their health care institutions will continue to serve as the primary laboratory for advance care planning policy and practice.
Topics: Advance Care Planning; Advance Directives; History, 20th Century; History, 21st Century; Humans; Living Wills; Policy Making; Resuscitation Orders; Terminal Care; United States
PubMed: 20579283
DOI: 10.1111/j.1468-0009.2010.00596.x -
The Cochrane Database of Systematic... Jan 2009An advance directive is a document specifying a person's preferences for treatment, should he or she lose capacity to make such decisions in the future. They have been... (Review)
Review
BACKGROUND
An advance directive is a document specifying a person's preferences for treatment, should he or she lose capacity to make such decisions in the future. They have been used in end-of-life settings to direct care but should be well suited to the mental health setting.
OBJECTIVES
To examine the effects of advance treatment directives for people with severe mental illness.
SEARCH STRATEGY
We searched the Cochrane Schizophrenia Group's Register (February 2008), the Cochrane Library (Issue 1 2008), BIOSIS (1985 to February 2008), CINAHL (1982 to February 2008), EMBASE (1980 to February 2008), MEDLINE (1966 to February 2008), PsycINFO (1872 to February 2008), as well as SCISEARCH and Google - Internet search engine (February 2008). We inspected relevant references and contacted first authors of included studies.
SELECTION CRITERIA
We included all randomised controlled trials (RCTs), involving adults with severe mental illness, comparing any form of advance directive with standard care for health service and clinical outcomes.
DATA COLLECTION AND ANALYSIS
We extracted data independently. For homogenous dichotomous data we calculated fixed-effect relative risk (RR) and 95% confidence intervals (CI) on an intention-to-treat basis. For continuous data, we calculated weighted mean differences (WMD) and their 95% confidence interval again using a fixed-effect model.
MAIN RESULTS
We were able to include two trials involving 321 people with severe mental illnesses. There was no significant difference in hospital admission (n=160, 1 RCT, RR 0.69 0.5 to 1.0), or number of psychiatric outpatient attendances between participants given advanced treatment directives or usual care. Similarly, no significant differences were found for compliance with treatment, self harm or number of arrests. Participants given advanced treatment directives needed less use of social workers time (n=160, 1 RCT, WMD -106.00 CI -156.2 to -55.8) than the usual care group, and violent acts were also lower in the advanced directives group (n=160, 1 RCT, RR 0.27 CI 0.1 to 0.9, NNT 8 CI 6 to 92). The number of people leaving the study early were not different between groups (n=321, 2 RCTs, RR 0.92 CI 0.6 to 1.6).
AUTHORS' CONCLUSIONS
There are too few data available to make definitive recommendations. More intensive forms of advance directive appear to show promise, but currently practice must be guided by evidence other than that derived from randomised trials. More trials are indicated to determine whether higher intensity interventions, such as joint crisis planning, have an effect on outcomes of clinical relevance.
Topics: Adult; Advance Directives; Commitment of Mentally Ill; Humans; Mental Disorders; Patient Admission; Randomized Controlled Trials as Topic
PubMed: 19160260
DOI: 10.1002/14651858.CD005963.pub2 -
International Journal of Environmental... Feb 2021Advance directive (AD) has been underutilized among patients with heart failure (HF). This study was performed to explore the ADs and examine factors associated with the...
Advance directive (AD) has been underutilized among patients with heart failure (HF). This study was performed to explore the ADs and examine factors associated with the completion of an AD survey in patients with HF. In a descriptive, correlational study, data on end-of-life values, treatment directives, and proxy (Korean-Advance Directive (K-AD) questionnaire) and factors associated with K-AD completion were collected among HF patients during outpatient visits. Of 67 patients (age, 67 years; male, 61.2%), 52.2% completed all or part of the K-AD. Among values, comfortable death was the most preferred ( = 15) followed by avoiding family burden ( = 6). In those completers, preferences for hospice care, cardiopulmonary resuscitation, ventilation support, and hemodialysis were 68.6%, 42.9%, 28.6%, and 28.6%, respectively. Female sex (odds ratio (OR) = 0.167), poorer HF prognosis (OR = 0.156), and better functional status (OR = 0.905) were associated with less likelihood of completing the AD survey. The findings suggest that in-depth AD discussion needs to be started earlier in patients with HF to facilitate completion of AD, especially in female patients. Future research should investigate if early discussion of ADs as part of advance care planning with integration into standard care of HF facilitates the documentation of ADs.
Topics: Advance Care Planning; Advance Directives; Aged; Female; Heart Failure; Humans; Male; Surveys and Questionnaires
PubMed: 33673089
DOI: 10.3390/ijerph18041780 -
BMC Medical Ethics Nov 2020In Spain, there has been great effort by lawmakers to put Advance Directives (ADs) into practice since 2002. At the same time, the field of bioethics has been on the...
BACKGROUND
In Spain, there has been great effort by lawmakers to put Advance Directives (ADs) into practice since 2002. At the same time, the field of bioethics has been on the rise, a discipline that has spurred debate on the right of patients to exercise their autonomy. Despite all this, the implementation of ADs can be said to have failed in Spain, because its prevalence is very low, there is a great lack of knowledge about them and they have very little impact on clinical decisions. The purpose of this article is to analyze and discuss the main reasons for the failure of ADs in Spain.
MAIN BODY
The main reasons why ADs have no impact on clinical practice in Spain have been fundamentally four: (1) the training of health professionals about the end of life and AD is lacking; (2) there has been no public process to increase awareness about AD, and therefore people (with the exception of specific highly sensitized groups) know little about them; (3) the bureaucratic procedure to document and implement ADs is excessively complex and cumbersome, creating a significant barrier to their application; (4) in Spain, the remnants of a paternalistic medical culture continue to exist, which causes shared decision-making to be difficult.
CONCLUSION
Due to the four reasons mentioned above, AD have not been a useful tool to help honor patients' autonomous decisions about their future care and, therefore, they have not achieved their objective. However, despite the difficulties and problems identified, it has also been observed that health care professionals and the Spanish public have a very positive view of AD. Having identified the problems which have kept AD from being successful, strategies must be developed to help improve their implementation into the future.
Topics: Advance Directives; Health Personnel; Humans; Spain
PubMed: 33198746
DOI: 10.1186/s12910-020-00557-4 -
JAMA Network Open Mar 2020There is limited evidence regarding how patients make choices in advance directives (ADs) or whether these choices influence subsequent care. (Randomized Controlled Trial)
Randomized Controlled Trial
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.
Topics: Advance Directives; Aged; Decision Making; Female; Hospitalization; Humans; Male; Middle Aged; Palliative Care; Patient Care Planning; Patient Satisfaction; Pennsylvania; Quality of Life; Terminal Care
PubMed: 32227179
DOI: 10.1001/jamanetworkopen.2020.1742 -
Theoretical Medicine and Bioethics Feb 2020This paper revisits Ronald Dworkin's influential position that a person's advance directive for future health care and medical treatment retains its moral authority...
This paper revisits Ronald Dworkin's influential position that a person's advance directive for future health care and medical treatment retains its moral authority beyond the onset of dementia, even when respecting this authority involves foreshortening the life of someone who is happy and content and who no longer remembers or identifies with instructions included within the advance directive. The analysis distils a eudaimonist perspective from Dworkin's argument and traces variations of this perspective in further arguments for the moral authority of advance directives by other authors. It then critiques a feature of the eudaimonist perspectives within these arguments-namely, the position that dementia has a retroactive negative impact on what a person has previously valued-and challenges the commonly held assumption underlying them that a person's life and well-being have relatively low value beyond the onset of dementia. Although advance directives have moral authority as a means of guiding one's future health care, accounts that dismiss the value of the lives and well-being of people living with dementia should be questioned to the extent that such accounts are used to support the moral authority of advance directives stipulating measures to foreshorten individuals' lives.
Topics: Advance Directives; Dementia; Humans; Moral Obligations; Philosophy, Medical
PubMed: 32034586
DOI: 10.1007/s11017-020-09517-w -
Clinical Medicine (London, England) 2006
Topics: Advance Directive Adherence; Advance Directives; Australia; Comprehension; Death; Delivery of Health Care; Ethics, Medical; Humans; Living Wills; United Kingdom
PubMed: 16826850
DOI: 10.7861/clinmedicine.6-3-231