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SAGE Open Medicine 2021The goal of end-of-life care for dying patients is to prevent or relieve suffering as much as possible while respecting the patients' desires. However, physicians face... (Review)
Review
The goal of end-of-life care for dying patients is to prevent or relieve suffering as much as possible while respecting the patients' desires. However, physicians face many ethical challenges in end-of-life care. Since the decisions to be made may concern patients' family members and society as well as the patients, it is important to protect the rights, dignity, and vigor of all parties involved in the clinical ethical decision-making process. Understanding the principles underlying biomedical ethics is important for physicians to solve the problems they face in end-of-life care. The main situations that create ethical difficulties for healthcare professionals are the decisions regarding resuscitation, mechanical ventilation, artificial nutrition and hydration, terminal sedation, withholding and withdrawing treatments, euthanasia, and physician-assisted suicide. Five ethical principles guide healthcare professionals in the management of these situations.
PubMed: 33786182
DOI: 10.1177/20503121211000918 -
Journal of Pain and Symptom Management Sep 2021Persons from underrepresented racial and ethnic groups experience disparities in access to and quality of palliative and end-of-life care. (Review)
Review
CONTEXT
Persons from underrepresented racial and ethnic groups experience disparities in access to and quality of palliative and end-of-life care.
OBJECTIVES
To summarize and evaluate existing palliative and end-of-life care interventions that aim to improve outcomes for racial and ethnic underrepresented populations in the United States.
METHODS
We conducted a systematic review of the literature in the English language from four databases through January 2020. Peer-reviewed studies that implemented interventions on palliative care, advance care planning, or end-of-life care were considered eligible. Data were extracted from 16 articles using pre-specified inclusion and exclusion criteria. Quality was appraised using the modified Downs and Black tool for assessing risk of bias in quantitative studies.
RESULTS
Five studies were randomized controlled trials, and the remainder were quasi-experiments. Six studies targeted Latino/Hispanic Americans, five African Americans, and five, Asian or Pacific Islander Americans. The two randomized control trials reviewed and rated "very high" quality, found educational interventions to have significant positive effects on advance care planning and advance directive completion and engagement for underrepresented racial or ethnic groups.
CONCLUSION
The effectiveness of advance care planning, end-of-life, and palliative care interventions in improving outcomes for underrepresented racial and ethnic populations remains uncertain. Randomized controlled trials and educational interventions indicate that interventions targeting underrepresented groups can have significant and positive effects on advance directives and/or advance care planning-related outcomes. More high-quality intervention studies that address racial and ethnic health disparities in palliative care are needed, particularly those that address systemic racism and other complex multilevel factors that influence disparities in health.
Topics: Advance Care Planning; Ethnicity; Hospice Care; Humans; Palliative Care; Terminal Care; United States
PubMed: 33984460
DOI: 10.1016/j.jpainsymman.2021.04.025 -
Cancer Mar 2022Clinicians often cite a fear of giving up hope as a reason they defer advance care planning (ACP) among patients with advanced cancer. The objective of this study was to... (Randomized Controlled Trial)
Randomized Controlled Trial
BACKGROUND
Clinicians often cite a fear of giving up hope as a reason they defer advance care planning (ACP) among patients with advanced cancer. The objective of this study was to determine whether engagement in ACP affects hope in these patients.
METHODS
This was a secondary analysis of a randomized controlled trial of primary palliative care in advanced cancer. Patients who had not completed ACP at baseline were included in the analysis. ACP was assessed in the forms of an end-of-life (EOL) conversation with one's oncologist and completion of a living will or advance directive (AD). Measurements were obtained at baseline and at 3 months. Hope was measured using the Herth Hope Index (HHI) (range, 12-48; higher scores indicate higher hope). Multivariate regression was performed to assess associations between ACP and hope, controlling for baseline HHI score, study randomization, patient age, religious importance, education, marital status, socioeconomic status, time since cancer diagnosis, pain/symptom burden (Edmonton Symptom Assessment System), and anxiety/depression score (Hospital Anxiety and Depression Scale)-all variables known to be associated with ACP and/or hope.
RESULTS
In total, 672 patients with advanced cancer were enrolled in the overall study. The mean age was 69 ± 10 years, and the most common cancer types were lung cancer (36%), gastrointestinal cancer (20%) and breast/gynecologic cancers (16%). In this group, 378 patients (56%) had not had an EOL conversation at baseline, of whom 111 of 378 (29%) reported having an EOL conversation by 3 months. Hope was not different between patients who did or did not have an EOL conversation over the study period (mean ± standard deviation ∆HHI, 0.20 ± 5.32 vs -0.53 ± 3.80, respectively; P = .136). After multivariable adjustment, hope was significantly increased in patients who had engaged in an EOL conversation (adjusted mean difference in ∆HHI, 0.95; 95% CI, 0.08-1.82; P = .032). Similarly, of 216 patients (32%) without an AD at baseline, 67 (31%) had subsequently completed an AD. Unadjusted hope was not different between those who did and did not complete an AD (∆HHI, 0.20 ± 3.89 vs -0.91 ± 4.50, respectively; P = .085). After adjustment, hope was significantly higher in those who completed an AD (adjusted mean difference in ∆HHI, 1.31; 95% CI, 0.13-2.49; P = .030).
CONCLUSIONS
The current results demonstrate that hope is not decreased after engagement in ACP and indeed may be increased. These findings may provide reassurance to clinicians who are apprehensive about having these important and difficult conversations.
LAY SUMMARY
Many oncologists defer advance care planning (ACP) out of concern for giving up hope. This study demonstrates that hope is not decreased in patients who have engaged in ACP either as a conversation with their oncologists or by completing an advance directive. With this information, providers may feel more comfortable having these important conversations with their patients.
Topics: Advance Care Planning; Advance Directives; Aged; Breast Neoplasms; Communication; Female; Humans; Middle Aged; Palliative Care
PubMed: 34787930
DOI: 10.1002/cncr.34034 -
The Yale Journal of Biology and Medicine Dec 2019The need for improved clinical education surrounding the way difficult news is delivered and how to initiate end-of-life (EOL) discussions with seriously ill patients... (Review)
Review
The need for improved clinical education surrounding the way difficult news is delivered and how to initiate end-of-life (EOL) discussions with seriously ill patients and their families is essential. Physicians and medical students often report feeling unprepared or uncomfortable with broaching the topic of death with their patients and families [1]. Early and honest conversations with patients concerning diagnoses and advance directives help patients and their families make well-informed decisions regarding future medical care, minimize pain and fears, and allow patients to experience a "peaceful death [1]." Moreover, end-of-life conversations frequently focus on resuscitation plans (advance directives), but should be broadened to include patients' psychosocial, physical, and economic concerns. Transparent, realistic, and sensitive end-of-life conversations can help patients maintain autonomy and dignity in the dying process and increase their quality of life as they near death. Additionally, initiating these conversations can alleviate emotional stress and physical symptoms, prevent invasive, costly, unnecessary, and unwanted care, aid grieving families through the bereavement process, and increase patients' satisfaction with end-of-life care provisions [2]. Overall, more attention and training must be delivered to physicians so that they are better prepared to initiate end-of-life discussions in a patient-centered way, focusing on patients' values and priorities. Requiring a more in depth, developmentally appropriate, and standardized training in EOL and palliative care for physicians-in-training in all disciplines in medical education is necessary. Redesigning medical school EOL curriculum will ensure physicians are better prepared to discuss death and dying and to ensure that seriously ill patients are dying well-informed.
Topics: Communication; Empathy; Humans; Judgment; Personal Autonomy; Physicians; Quality of Life; Terminal Care
PubMed: 31866792
DOI: No ID Found -
Einstein (Sao Paulo, Brazil) 2020The objective of this study was to identify the variables that influence physicians to implement Advance Directives and assess their impact on end-of-life care. It is a... (Review)
Review
The objective of this study was to identify the variables that influence physicians to implement Advance Directives and assess their impact on end-of-life care. It is a narrative literature review of 25 articles published between 1997 and 2018, in the following databases: CAPES, EBSCOhost, BDTD, VHL, Google Scholar, MEDLINE®/PubMed. The keywords utilized were: "advance directives", "living wills", "physicians", "attitude", "decision making", "advance care planning". The main factors that influenced physicians to implemente the directives were patients prognosis, medical paternalism, and patients understanding of their medical condition. Respect for autonomy, lack of knowledge and experience with directives, legal concerns, family influence, cultural and religious factors also contributed to medical decision. Most studies (86%) showed that having a directive led to lower rates of invasive interventions in the last days of patient´s life. Physicians were interested in respecting their patients' autonomy and agreed that having an advance directive helped in the decision-making process; however, they stated other factors were also taken into account, mainly prognosis and reversibility conditions. Having directives contributed to reducing the use of life support therapies and adoption of comfort measures.
Topics: Advance Directive Adherence; Advance Directives; Attitude of Health Personnel; Decision Making; Humans; Paternalism; Personal Autonomy; Physicians; Terminal Care
PubMed: 31618287
DOI: 10.31744/einstein_journal/2020RW4852 -
Journal of the American Geriatrics... Jan 2021Advance care planning (ACP) has shown benefit in some, but not all, studies. It is important to understand the utility of ACP. We conducted a scoping review to identify... (Review)
Review
BACKGROUND/OBJECTIVES
Advance care planning (ACP) has shown benefit in some, but not all, studies. It is important to understand the utility of ACP. We conducted a scoping review to identify promising interventions and outcomes.
DESIGN
Scoping review.
MEASUREMENTS
We searched MEDLINE/PubMed, EMBASE, CINAHL, PsycINFO, and Web of Science for ACP randomized controlled trials from January 1, 2010, to March 3, 2020. We used standardized Preferred Reporting Items for Systematic Review and Meta-Analyses methods to chart study characteristics, including a standardized ACP Outcome Framework: Process (e.g., readiness), Action (e.g., communication), Quality of Care (e.g., satisfaction), Health Status (e.g., anxiety), and Healthcare Utilization. Differences between arms of P < .05 were deemed positive.
RESULTS
Of 1,464 articles, 69 met eligibility; 94% were rated high quality. There were variable definitions, age criteria (≥18 to ≥80 years), diseases (e.g., dementia and cancer), and settings (e.g., outpatient and inpatient). Interventions included facilitated discussions (42%), video only (20%), interactive, multimedia (17%), written only (12%), and clinician training (9%). For written only, 75% of primary outcomes were positive, as were 69% for multimedia programs; 67% for facilitated discussions, 59% for video only, and 57% for clinician training. Overall, 72% of Process and 86% of Action outcomes were positive. For Quality of Care, 88% of outcomes were positive for patient-surrogate/clinician congruence, 100% for patients/surrogate/clinician satisfaction with communication, and 75% for surrogate satisfaction with patients' care, but not for goal concordance. For Health Status outcomes, 100% were positive for reducing surrogate/clinician distress, but not for patient quality of life. Healthcare Utilization data were mixed.
CONCLUSION
ACP is complex, and trial characteristics were heterogeneous. Outcomes for all ACP interventions were predominantly positive, as were Process and Action outcomes. Although some Quality of Care and Health Status outcomes were mixed, increased patient/surrogate satisfaction with communication and care and decreased surrogate/clinician distress were positive. Further research is needed to appropriately tailor interventions and outcomes for local contexts, set appropriate expectations of ACP outcomes, and standardize across studies.
Topics: Advance Directives; Communication; Humans; Physician-Patient Relations; Quality of Health Care; Randomized Controlled Trials as Topic
PubMed: 32894787
DOI: 10.1111/jgs.16801 -
PLoS Medicine Nov 2020Advance care planning (ACP) supports individuals to define, discuss, and record goals and preferences for future medical treatment and care. Despite being... (Randomized Controlled Trial)
Randomized Controlled Trial
BACKGROUND
Advance care planning (ACP) supports individuals to define, discuss, and record goals and preferences for future medical treatment and care. Despite being internationally recommended, randomised clinical trials of ACP in patients with advanced cancer are scarce.
METHODS AND FINDINGS
To test the implementation of ACP in patients with advanced cancer, we conducted a cluster-randomised trial in 23 hospitals across Belgium, Denmark, Italy, Netherlands, Slovenia, and United Kingdom in 2015-2018. Patients with advanced lung (stage III/IV) or colorectal (stage IV) cancer, WHO performance status 0-3, and at least 3 months life expectancy were eligible. The ACTION Respecting Choices ACP intervention as offered to patients in the intervention arm included scripted ACP conversations between patients, family members, and certified facilitators; standardised leaflets; and standardised advance directives. Control patients received care as usual. Main outcome measures were quality of life (operationalised as European Organisation for Research and Treatment of Cancer [EORTC] emotional functioning) and symptoms. Secondary outcomes were coping, patient satisfaction, shared decision-making, patient involvement in decision-making, inclusion of advance directives (ADs) in hospital files, and use of hospital care. In all, 1,117 patients were included (442 intervention; 675 control), and 809 (72%) completed the 12-week questionnaire. Patients' age ranged from 18 to 91 years, with a mean of 66; 39% were female. The mean number of ACP conversations per patient was 1.3. Fidelity was 86%. Sixteen percent of patients found ACP conversations distressing. Mean change in patients' quality of life did not differ between intervention and control groups (T-score -1.8 versus -0.8, p = 0.59), nor did changes in symptoms, coping, patient satisfaction, and shared decision-making. Specialist palliative care (37% versus 27%, p = 0.002) and AD inclusion in hospital files (10% versus 3%, p < 0.001) were more likely in the intervention group. A key limitation of the study is that recruitment rates were lower in intervention than in control hospitals.
CONCLUSIONS
Our results show that quality of life effects were not different between patients who had ACP conversations and those who received usual care. The increased use of specialist palliative care and AD inclusion in hospital files of intervention patients is meaningful and requires further study. Our findings suggest that alternative approaches to support patient-centred end-of-life care in this population are needed.
TRIAL REGISTRATION
ISRCTN registry ISRCTN63110516.
Topics: Adaptation, Psychological; Adolescent; Adult; Advance Care Planning; Advance Directives; Aged; Aged, 80 and over; Belgium; Communication; Decision Making; Denmark; Female; Humans; Italy; Male; Middle Aged; Neoplasms; Netherlands; Patient Participation; Patient-Centered Care; Quality of Life; Slovenia; United Kingdom; Young Adult
PubMed: 33186365
DOI: 10.1371/journal.pmed.1003422 -
JAMA Oct 2021
Topics: Adult; Advance Care Planning; Advance Directive Adherence; Decision Making; Decision Making, Shared; Health Services Needs and Demand; Humans; Patient Preference; Proxy; Quality Improvement; Quality of Life; Terminal Care
PubMed: 34623373
DOI: 10.1001/jama.2021.16430