scholarly journals Promoting patients' rights at the end of life in a geriatric setting in France: The healthcare professionals’ level of knowledge about surrogate decision-makers and advance directives

2020 ◽  
Vol 103 (7) ◽  
pp. 1390-1398
Author(s):  
Jean Paul Rwabihama ◽  
Joël Belmin ◽  
De Rozier Rakotoarisoa ◽  
Meoïn Hagege ◽  
Etienne Audureau ◽  
...  
Keyword(s):  
End Of Life ◽  
Advance Directives ◽  
Healthcare Professionals ◽  
Decision Makers ◽  
Patients Rights ◽  
Surrogate Decision Makers ◽  
Level Of Knowledge ◽  
Surrogate Decision

We Should Widen Access to Physician-Assisted Death

2021 ◽  
pp. 1-31
Author(s):  
Jordan MacKenzie ◽  
Adam Lerner
Keyword(s):  
Advance Directives ◽  
Terminally Ill ◽  
Decision Makers ◽  
Assisted Death ◽  
Surrogate Decision Makers ◽  
Incapacitated Patients ◽  
Surrogate Decision ◽  
Rule Out

Abstract Typical philosophical discussions of physician-assisted death (“pad”) have focused on whether the practice can be permissible. We address a different question: assuming that pad can be morally permissible, how far does that permission extend? We will argue that granting requests for pad may be permissible even when the pad recipient can no longer speak for themselves. In particular, we argue against the ‘competency requirement’ that constrains pad-eligibility to presently-competent patients in most countries that have legalized pad. We think pad on terminally ill, incapacitated patients can be morally permissible in cases where advance directives or suitable surrogate decision-makers are available, and should be legally permissible in such cases as well. We argue that this view should be accepted on pain of inconsistency: by allowing surrogate decision-makers to request withdrawal of life-sustaining care on behalf of patients and by allowing patients to request pad, we rule out any plausible justification for imposing a competency requirement on pad.

scholarly journals Development and effectiveness of advance care planning protocol for heart failure outpatients

2021 ◽  
Vol 20 (Supplement_1) ◽  
Author(s):  
AH Higashitsuji ◽  
SO Okada ◽  
YF Fujisawa ◽  
MS Sano ◽  
NT Taguchi ◽  
...  
Keyword(s):  
Heart Failure ◽  
End Of Life ◽  
End Of Life Care ◽  
Home Visit ◽  
Decision Makers ◽  
Care Planning ◽  
Life Care ◽  
Patients With Heart Failure ◽  
Surrogate Decision Makers ◽  
Surrogate Decision

Abstract Funding Acknowledgements Type of funding sources: None. Background/Introduction Heart failure has a poor prognosis, and the number of patients continues to increase. Moreover, since it is a disease that causes various sufferings, substantial end-of-life care is needed. Advanced care planning (ACP) is a part of end-of-life care for patients with heart failure. ACP provides patient decision-making opportunities, documenting end-of-life preferences, and increasing end-of-life conversation. However, the ACP intervention for patients with heart failure is not integrated, and studies are insufficient. In addition, Japan follows a non-Western culture, in which participation in the medical decision-making is reluctant and considered to be less prepared for ACP. Clarifying the effects of systematic ACP on patients with heart failure in Japan can be used to determine effective interventions in Japan and may provide effective ACP intervention for patients who have no preparedness worldwide. Purpose This study aimed to identify the effect of protocol-based intervention on the outcomes of ACP in Japanese outpatients with heart failure. Methods This is a single-center retrospective observational study. Data on patient attributes, conversation records, and document information from medical records of patients who have undergone intervention using the predeveloped ACP protocol were collected. Numerical data were statistically analyzed. ACP results were evaluated by performing deductive content analysis on the basis of existing frameworks. A subgroup analysis was performed on differences in ACP outcomes based on patient attributes. Results Data were collected from 13 patients who underwent ACP intervention. The median age was 69 years. Moreover, 76% were male, 84% were married, 76% were living with family, and 46% were receiving home-visit nursing care. New York Heart Association functional classification II was the most common in the severity classification of heart failure, and ischemic cardiomyopathy was the most common etiology. Documenting patient’s wishes, recording patient’s wishes in medical record, and identifying what brings value to patient"s life were achieved in 76% of the participants. Deciding surrogate decision makers, discussing values and care preferences with the surrogate, and discussing values and care preferences with health care professionals were achieved in 69% of the participants. Differences in patient attributes, such as age and presence or absence of home-visit nursing, did not affect ACP outcomes. Conclusion Protocol-based ACP allows patients with heart failure to determine surrogate decision makers and discuss care preferences with healthcare professionals, identify what they value, and record their wishes. The protocol-based ACP had a positive impact on ACP outcomes, without being restricted by patient attributes.

scholarly journals The Association of Surrogate Decision Makers' Religious and Spiritual Beliefs With End-of-Life Decisions

2020 ◽  
Vol 59 (2) ◽  
pp. 261-269 ◽  
Author(s):  
Alexia M. Torke ◽  
George Fitchett ◽  
Saneta Maiko ◽  
Emily S. Burke ◽  
James E. Slaven ◽  
...  
Keyword(s):  
End Of Life ◽  
Decision Makers ◽  
Spiritual Beliefs ◽  
End Of Life Decisions ◽  
Surrogate Decision Makers ◽  
Life Decisions ◽  
Surrogate Decision

Working with Children in End-of-Life Decision Making

2009 ◽  
Vol 16 (6) ◽  
pp. 743-758 ◽  
Author(s):  
Joanne Whitty-Rogers ◽  
Marion Alex ◽  
Cathy MacDonald ◽  
Donna Pierrynowski Gallant ◽  
Wendy Austin
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Decision Makers ◽  
Ethical Challenges ◽  
Children And Families ◽  
Best Interest ◽  
Surrogate Decision Makers ◽  
Surrogate Decision ◽  
End Of Life Decision

Traditionally, physicians and parents made decisions about children’s health care based on western practices. More recently, with legal and ethical development of informed consent and recognition for decision making, children are becoming active participants in their care. The extent to which this is happening is however blurred by lack of clarity about what children — of diverse levels of cognitive development — are capable of understanding. Moreover, when there are multiple surrogate decision makers, parental and professional conflict can arise concerning children’s ‘best interest’. Giving children a voice and offering choice promotes their dignity and quality of life. Nevertheless, it also presents with many challenges. Case studies using pseudonyms and changed situational identities are used in this article to illuminate the complexity of ethical challenges facing nurses in end-of-life care with children and families.

Illustrative Cases

2021 ◽  
pp. 133-150
Keyword(s):  
Decision Making ◽  
Advance Directives ◽  
Decision Makers ◽  
Decision Making Capacity ◽  
Challenges And Opportunities ◽  
Surrogate Decision Makers ◽  
Food And Drink ◽  
Surrogate Decision ◽  
Real Patients

Four stories of real patients considering VSED who would prefer to continue living until decision-making capacity is lost, and then have others start the stopping eating and drinking (SED) process on their behalf are described. Waiting until this stage potentially protects patients from having to initiate VSED before they really want to, but it also places considerable burdens on surrogate decision-makers who must activate the SED process based on the patient’s prior statements and formal advance directives (ADs). ADs for SED can help guide the timing, but a now-incapacitated patient who is very hungry and thirsty may not comprehend why he is not being provided food and drink. Patients and surrogates should consider in advance how to weigh statements of the “then-self” versus the “now-self” in subsequent decision-making. Four cases of SED by AD are explored, including some of the challenges and opportunities raised by allowing this possibility.

scholarly journals Surrogate Decision Makers' Understanding of Dementia Patients' Prior Wishes for End-of-Life Care

2009 ◽  
Vol 21 (4) ◽  
pp. 627-650 ◽  
Author(s):  
Betty S. Black ◽  
Linda A. Fogarty ◽  
Hilary Phillips ◽  
Thomas Finucane ◽  
David J. Loreck ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Decision Makers ◽  
Life Care ◽  
Dementia Patients ◽  
Surrogate Decision Makers ◽  
Surrogate Decision

scholarly journals A rapid review of patient and family perspectives on inappropriateness of intensive care treatments at the end of life

2019 ◽  
Author(s):  
Magnolia Cardona ◽  
Shantiban Shanmugam ◽  
Ebony T Lewis ◽  
Alex Psirides ◽  
Matthew Anstey ◽  
...  
Keyword(s):  
Intensive Care ◽  
End Of Life ◽  
Decision Makers ◽  
Rapid Review ◽  
Treatment Goals ◽  
Social Constructs ◽  
Icu Admission ◽  
Family Perspective ◽  
Surrogate Decision Makers ◽  
Surrogate Decision

ABSTRACTAimTo understand patient/family perspective of inappropriate intensive care unit (ICU) admissions and treatment.MethodsRapid literature review of English language articles published between 2001 and 2017 in Medline or PsycInfo.ResultsThirteen articles covering 6,194 elderly patients or surrogate decision-makers from four countries were eligible. Perceived inappropriateness of ICU treatments was mainly expressed as dissatisfaction with clinicians’ as surrogate decision-makers, inconsistency with patient/family values, family distrust of physician’s predictions on poor prognosis, and inadequate communication on over-aggressive treatment causing suffering. Consultation on opinion before ICU admission varied from 1% to 53.6%, and treatment goals from 1.4 to 31.7%. Satisfaction with the decision-making process in ICU was higher for those who had certain level of control and involvement in the process.ConclusionsThe patient/family perspective on inappropriateness of ICU treatments involves preferences, values and social constructs beyond medical criteria. Earlier consultation with families before ICU admission, and patient education on outcomes of life-sustaining therapies may help reconcile these provider-patient disagreements.Take-home messageThe patient/family perspective on inappropriateness of ICU at the end of life often differs from the clinician’s opinion due to the non-medical frame of mind. To improve satisfaction with communication on treatment goals, consultation on patient values and inclusion of social constructs in addition to clinical prediction are a good start to reconcile differences between physician and health service users’ viewpoint.

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