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Journal of Pain and Symptom Management Jan 2017Given recent Medicare rules reimbursing clinicians for engaging in advance care planning, there is heightened need to understand factors associated with the timing of...
CONTEXT
Given recent Medicare rules reimbursing clinicians for engaging in advance care planning, there is heightened need to understand factors associated with the timing of advance directive (AD) completion before death and how the timing impacts care decisions.
OBJECTIVE
The purpose of this study was to investigate patterns in timing of AD completion and the relationship between timing and documented care preferences. We hypothesize that ADs completed late in the course of illness or very early in the disease trajectory will reflect higher preferences for aggressive care.
METHODS
We conducted a retrospective study using logistic regressions to analyze data from the Health and Retirement Study, a nationally representative longitudinal survey of older adults.
RESULTS
The analytic sample included exit interviews conducted from 2000 to 2012 among 2904 proxy reporters of deceased participants who had an AD. Nearly three-quarters (71%) of ADs were completed a year or more before death. Being younger or a racial/ethnic minority, and having lower education, a diagnosis of cancer or lung disease, and an expected death were associated with completing an AD within the three months before death, while having the lowest quartile of assets and memory problems were inversely associated with AD completion. Minorities, those with lower education, expected death, and timing of AD completion were associated with electing aggressive care.
CONCLUSION
Early documentation of care wishes may not be associated with an increased likelihood of electing aggressive care; however, ADs completed in the last months of life have higher rates of election of aggressive care.
Topics: Advance Care Planning; Advance Directives; Aged; Aged, 80 and over; Female; Humans; Male; Middle Aged; Patient Participation; Patient Preference; Retrospective Studies
PubMed: 27720793
DOI: 10.1016/j.jpainsymman.2016.08.008 -
BMC Medical Ethics Mar 2019In December 2017, Law 219/2017, 'Provisions for informed consent and advance directives', was approved in Italy. The law is the culmination of a year-long process and... (Review)
Review
BACKGROUND
In December 2017, Law 219/2017, 'Provisions for informed consent and advance directives', was approved in Italy. The law is the culmination of a year-long process and the subject of heated debate throughout Italian society. Contentious issues (advance directives, the possibility to refuse medical treatment, the withdrawal of medical treatment, nutrition and hydration) are addressed in the law.
MAIN TEXT
What emerges clearly are concepts such as quality of life, autonomy, and the right to accept or refuse any medical treatment - concepts that should be part of an optimal relationship between the patient and healthcare professionals. The law maximizes the value of the patient's time to decide. Every patient is allowed to make choices for the present (consenting to or refusing current treatment) as well as for the future, conceived as a continuation of the present, and to decide what comes next, based on what he/she already knows. The law identifies three distinct but converging paths towards the affirmation of a care relationship based on reciprocal trust and respect: the possibility to consent to or refuse treatment, the shared care planning, and advance directives.
CONCLUSIONS
The fundamental point to emerge from the new Italian law is that consensus is an essential connotation of the treatment relationship. Consensus is not limited to the acceptance/rejection of medical treatment but is ongoing. It is projected into the future through shared care planning and advance directives which act as tools for self-determination and the manifestation of the beliefs and preferences of persons unable to express their will. These principles are in line with the idea of appropriate care as evaluated from two different perspectives, one of scientific adequacy and the other commensurate with the individual's resources, fragility, values, and beliefs. Surely, however, the new law is not the end of the matter on issues such as conscientious objection, which is deeply rooted within the Italian cultural and political debate. In this regard, healthcare institutions and policymakers will be called upon to develop and implement organizational policies aimed at the management of foreseeable conscientious objection in this field.
Topics: Advance Directives; Consensus; Humans; Informed Consent; Italy; Personal Autonomy; Terminal Care; Withholding Treatment
PubMed: 30832644
DOI: 10.1186/s12910-019-0353-2 -
Journal of the American Geriatrics... Jun 2017Studies have documented ethnic differences in advance directive (AD) completion, with lower rates in minority groups. Of those with ADs, blacks are more likely than...
Studies have documented ethnic differences in advance directive (AD) completion, with lower rates in minority groups. Of those with ADs, blacks are more likely than whites to prefer aggressive care, but little is known about how these differences in preferences have changed over time in ethnic groups. This nationally representative study aimed to investigate whether these differences in AD development persisted after adjusting for important confounding variables. Year of death was analyzed to see how AD completion changed over time within ethnic groups, and for those with an AD, the association between these factors and opting for aggressive care was investigated. Data from the 2000 to 2012 Health and Retirement Study (HRS) exit interviews from 7,177 decedents were used. Analyses included logistic regression to determine the relationship between ethnicity and AD completion and preferences for aggressive care and how it changed over time in ethnic groups. Forty-six percent of decedents had completed an AD (whites 51.7%, Hispanics 18.0%, blacks 15.0%). Of blacks completing an AD, 23.8% elected prolonged care, compared with 13.3% of Hispanics and 3.3% of whites. Logistic regression revealed that blacks 75% lower odds of completing an AD and Hispanics had 70% lower odds. Model covariates had a small influence on ethnic differences, although in examining the change in AD completion over time, the odds of having an AD increased with each subsequent death year for blacks and whites but not Hispanics. Additional research is needed to investigate the effect of cultural differences in AD completion rates of ethnic minority groups to ensure that preferences are honored in the clinical setting.
Topics: Advance Directives; Black or African American; Aged, 80 and over; Attitude to Death; Ethnicity; Female; Hispanic or Latino; Humans; Male; Patient Preference; Terminal Care; White People
PubMed: 28276051
DOI: 10.1111/jgs.14800 -
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 -
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 -
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 -
BMC Palliative Care Dec 2023Hemodialysis holds the highest incidence and prevalence rate in Taiwan globally. However, the implementation of advance care planning (ACP), advance directives (AD), and...
BACKGROUND
Hemodialysis holds the highest incidence and prevalence rate in Taiwan globally. However, the implementation of advance care planning (ACP), advance directives (AD), and patient self-determination acts (PSDA) remains limited. Our objective was to examine the current status of ACP, AD and PSDA and potential opportunities for enhancement.
METHODS
We developed a novel questionnaire to assess individuals' knowledge, attitudes, and intentions regarding ACP, AD, and PSDA. We also collected baseline characteristics and additional inquiries for correlation analysis to identify potential factors. Student's t-test and Analysis of Variance were employed to assess significance.
RESULTS
Initially, a cohort of 241 patients was initially considered for inclusion in this study. Subsequently, 135 patients agreed to participate in the questionnaire study, resulting in 129 valid questionnaires. Among these respondents, 76 were male (59.9%), and 53 were female (41.1%). Only 13.2% had signed AD. A significant portion (85.3%) indicated that they had not discussed their dialysis prognosis with healthcare providers. Additionally, a mere 14% engaged in conversations about life-threatening decisions. Ninety percent believed that healthcare providers had not furnished information about ACP, and only 30% had discussed such choices with their families. The findings revealed that the average standardized score for ACP and AD goals was 84.97, while the attitude towards PSDA received a standardized score of 69.94. The intention score stood at 69.52 in standardized terms. Potential candidates for ACP initiation included individuals aged 50 to 64, possessing at least a college education, being unmarried, and having no history of diabetes.
CONCLUSION
Patients undergoing hemodialysis exhibited a significant knowledge gap concerning ACP, AD, and the PSDA. Notably, a substantial number of dialytic patients had not received adequate information on these subjects. Nevertheless, they displayed a positive attitude, and a considerable proportion expressed a willingness to sign AD. It is imperative for nephrologists to take an active role in initiating ACP discussions with patients from the very beginning.
Topics: United States; Humans; Male; Female; Patient Self-Determination Act; Intention; Health Knowledge, Attitudes, Practice; Advance Directives; Advance Care Planning; Renal Dialysis
PubMed: 38097993
DOI: 10.1186/s12904-023-01321-2 -
Der Internist May 2022Despite the availability of the instruments of advance directives, power of attorney and healthcare proxy, the patient's preferences for life-sustaining medical... (Review)
Review
Despite the availability of the instruments of advance directives, power of attorney and healthcare proxy, the patient's preferences for life-sustaining medical treatment in a specific situation often remain unknown. The aim of the systemically designed German Advance Care Planning (ACP) program is the reflection, documentation and implementation of patients' preferences regarding future medical treatment in case they are incapable of legally binding decision-making. A specially trained ACP facilitator initially supports the verbalization of the attitudes towards life, severe illness and death on an individual level. Based on these principal views, concrete preferences on how to be treated under defined medical circumstances can be discussed and documented in an advance directive. This includes the three scenarios medical emergency, inpatient hospital treatment in situations with decisional incapability of unknown duration and the situation of permanent cognitive impairment. Through cautious, nondirective conversational techniques in the sense of shared decision-making, the person is enabled to reflect and decide well-informed according to the informed consent standard. All persons participating in decisions regarding future medical treatment, especially future surrogate decision makers, are involved in the process as early as possible. A systematic institutional and regional implementation of the concept is necessary to ensure that the carefully assessed and documented preferences of the patients will be known and honored. The new German § 132g of the Social Code Book V (SGB V) enables institutions for long-term care and for the care of disabled persons, to offer facilitated ACP to all residents at the expense of the statutory health insurance funds. An increased dissemination of this concept is to be expected.
Topics: Advance Care Planning; Advance Directives; Decision Making; Humans; Internal Medicine; Palliative Care
PubMed: 35441880
DOI: 10.1007/s00108-022-01333-9 -
Journal of Hospital Medicine Jun 2022Health 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....
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.
Topics: Advance Directives; Death; Health Care Costs; Health Expenditures; Hospitals; Humans
PubMed: 35527477
DOI: 10.1002/jhm.12839 -
Journal of General Internal Medicine Aug 2002Advance directives (AD) with specific treatment preferences can be difficult to apply in actual clinical situations. As an alternative, advance directives that outline... (Comparative Study)
Comparative Study
BACKGROUND
Advance directives (AD) with specific treatment preferences can be difficult to apply in actual clinical situations. As an alternative, advance directives that outline patient goals and values have been advocated.
OBJECTIVE
To compare patient reactions to values-based and treatment-based advance directive forms.
SETTING
Two academic general medicine outpatient clinics in Pittsburgh, Pa.
METHODS
Outpatients age 55 or older who did not have an AD and were not demented were randomly assigned to complete either Emanuel's Medical Directive (EMD) or Pearlman's values history (PVH) form.
MEASUREMENTS
Length of time to complete and number of questions asked about the AD forms; proportions of patients discussing the AD with family, designating a surrogate, returning the AD by mail, and desiring to have the AD in the medical record; patient ratings of AD by telephone interview; physician report of patient-initiated AD discussions.
RESULTS
Of the 275 patients approached, 143 refused, 69 already had an AD, 63 patients were enrolled, and 25 in each group completed the telephone interview. A majority of individuals in both groups had conversations with others about the AD (60% EMD, 56% PVH; P = .77). All PVH forms designated a surrogate, whereas 79% of EMD forms did so (P = .02). One patient in each group initiated a conversation with his or her physician about AD following study completion. Both forms were thought to be a good first step in planning care at the end of life (92% EMD vs 84% PVH totally or mostly agree; P = .06). Patients completing the EMD thought it would give them control over the way their doctor cared for them at the end of their lives more than did the PVH group (84% EMD vs 48% PVH totally or mostly agree; P = .02). More patients completing the EMD form worried that it would be difficult to change answers on the form if they later changed their minds (20% EMD vs 4% PVH totally or mostly agree; P = .02).
CONCLUSIONS
Both the values-based and treatment-based AD forms were rated favorably overall. Patients thought the treatment-based directive would give them more control over their care. Patients completing the values history form were more likely to designate a surrogate. Patients are likely to discuss both types of AD with family, but neither form alone is likely to lead to AD conversations with physicians.
Topics: Advance Directives; Aged; Attitude to Health; Decision Making; Female; Humans; Interviews as Topic; Male; Middle Aged; Physician-Patient Relations
PubMed: 12213143
DOI: 10.1046/j.1525-1497.2002.10933.x