What Surrogates Understand (and Don’t Understand) About Patients’ Wishes After Engaging Advance Care Planning: A Qualitative Analysis

2021 ◽  
pp. 104990912110266
Author(s):  
David B. Simmons ◽  
Benjamin H. Levi ◽  
Michael J. Green ◽  
In Seo La ◽  
Daniella Lipnick ◽  
...  
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Advance Care Planning ◽  
Tertiary Care ◽  
Medical Decision ◽  
Care Planning ◽  
Prognostic Information ◽  
Informational Uncertainty ◽  
Advance Care ◽  
Patients Wishes

Background: The goal of advance care planning (ACP) is to improve end-of-life decision-making for patients and their spokespersons, but multiple studies have failed to show substantial or consistent benefit from ACP. Understanding how and why ACP under-performs in the setting of complex medical decision-making is key to optimizing current, or designing new, ACP interventions. Aim: To explore how ACP did or did not contribute to a spokespersons’ understanding of patient wishes after engaging in ACP. Design: Thematic analysis of 200 purposively sampled interviews from a randomized control trial of an ACP decision aid. Setting/Participants: 200 dyads consisting of patients 18 years or older with advanced serious illness and their spokesperson at 2 tertiary care centers in Hershey, PA and Boston, MA. Participants were interviewed 1 month after completing ACP. Results: ACP helped participants: 1) express clear end-of-life wishes, 2) clarify values, and 3) recognize challenges associated with applying those wishes in complex situations. Shortcomings of ACP included 1) unknown prognostic information or quality-of-life outcomes to inform decision-making, 2) skepticism about patients’ wishes, and 3) complicated emotions impacting end-of-life discussions. Conclusions: Helping patients and their spokespersons better anticipate decision-making in the face of prognostic and informational uncertainty as well as the emotional complexities of making medical decisions may improve the efficacy of ACP interventions.

The implications of the Mental Capacity Act (MCA) 2005 for advance care planning and decision making

2018 ◽  
Author(s):  
Simon Chapman ◽  
Ben Lobo
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Advance Care Planning ◽  
Care Planning ◽  
Best Interest ◽  
Policy And Practice ◽  
Advance Care ◽  
Current Context ◽  
Mental Capacity Act ◽  
End Of Life Decision

This chapter provides an overview of the MCA’s impact on end-of-life care. It situates the MCA in the current context of policy and practice. It describes how the MCA can be used to improve care, enable people to express and protect choices, and empower and enable the professional and/or the proxy decision maker. It also presents an introduction and explanation of the role of the IMCA and how it might apply to advance care planning (ACP) and end of life decision making, and an explanation of the legal and ethical process involved in reaching best interest decisions, especially for potentially vulnerable people in care homes and other settings.

scholarly journals Advance Care Planning and End-Of-Life Communications: Practical Tips for Oncology Advanced Practitioners

2021 ◽  
Vol 12 (1) ◽  
Author(s):  
Poonam Goswami, DNP, FNP-C, AOCNP
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Aggressive Treatment ◽  
Advanced Practitioner ◽  
Advance Care ◽  
Patients Wishes

Advance care planning discussions ensure patients’ values and goals of care, including the freedom to choose their place of death, are respected. The benefits of advance care planning and early end-of-life care discussions are often delayed, as these discussions are not initiated early in patients’ cancer trajectories. As a result, patients’ wishes often remain unknown until the last phase of their life. Evidence suggests that many patients inappropriately receive aggressive treatment near the end of life, which leads to higher resource utilization, decreased quality of life, and increased cost. The purpose of this article is to provide practical tips to the oncology advanced practitioner on initiating advance care planning and end-of-life care discussions with patients and their families or caregivers.

scholarly journals Advance care planning in Asian culture

2020 ◽  
Vol 50 (9) ◽  
pp. 976-989 ◽  
Author(s):  
Shao-Yi Cheng ◽  
Cheng-Pei Lin ◽  
Helen Yue-lai Chan ◽  
Diah Martina ◽  
Masanori Mori ◽  
...  
Keyword(s):  
Health Care ◽  
Decision Making ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Patient Autonomy ◽  
Care Planning ◽  
Life Care ◽  
Asian Countries ◽  
Advance Care

Abstract Ageing has been recognized as one of the most critically important health-care issues worldwide. It is relevant to Asia, where the increasing number of older populations has drawn attention to the paramount need for health-care investment, particularly in end-of-life care. The advocacy of advance care planning is a mean to honor patient autonomy. Since most East Asian countries are influenced by Confucianism and the concept of ‘filial piety,’ patient autonomy is consequently subordinate to family values and physician authority. The dominance from family members and physicians during a patient’s end-of-life decision-making is recognized as a cultural feature in Asia. Physicians often disclose the patient’s poor prognosis and corresponding treatment options to the male, family member rather to the patient him/herself. In order to address this ethical and practical dilemma, the concept of ‘relational autonomy’ and the collectivism paradigm might be ideally used to assist Asian people, especially older adults, to share their preferences on future care and decision-making on certain clinical situations with their families and important others. In this review article, we invited experts in end-of-life care from Hong Kong, Indonesia, Japan, South Korea, Singapore and Taiwan to briefly report the current status of advance care planning in each country from policy, legal and clinical perspectives. According to the Asian experiences, we have seen different models of advance care planning implementation. The Asian Delphi Taskforce for advance care planning is currently undertaken by six Asian countries and a more detailed, culturally sensitive whitepaper will be published in the near future.

Advance Care Planning for Persons with Intellectual Disabilities

GeroPsych ◽  
2018 ◽  
Vol 31 (2) ◽  
pp. 87-95 ◽  
Author(s):  
Monika T. Wicki
Keyword(s):  
Decision Making ◽  
Intellectual Disabilities ◽  
End Of Life ◽  
Advance Care Planning ◽  
Care Planning ◽  
End Of Life Decisions ◽  
Percent Agreement ◽  
Decision Making Capacity ◽  
Advance Care ◽  
Life Decisions

Abstract. As people live longer, they become more likely to die from prolonged, incurable, chronic illnesses occurring more frequently in old age. This study explores the usefulness, quality, and reliability of documented advance care planning interviews to determine the decision-making capacity of persons with intellectual disabilities (IDs). A volunteer sample of 60 persons rated the capacity to consent to treatment of four persons deciding on two end-of-life decisions. Sensitivity, specificity, and percent agreement were calculated. Interrater reliability was assessed using Fleiss’ κ and Krippendorff’s α. A Yates’ corrected χ2 was used to analyze differences in ratings between groups of raters. The sensitivity value was 62%; the specificity value was 95%. The percent agreement for all participants was 70%, Fleiss’ κ was 0.396, and Krippendorff’s α was 0.395. Of the participants, 72 found documented advance care planning discussions useful for diagnosing the decision-making capacity of people with IDs. The documented interviews helped to identify those persons with IDs who had the decision-making capacity. Documented interviews on end-of-life decisions could make a valuable contribution to fostering their self-determination in end-of-life issues.

scholarly journals CLINICAL DECISION-MAKING MOMENTS: A REALITY FOR ADVANCE CARE PLANNING AT END-OF-LIFE

2013 ◽  
Vol 3 (2) ◽  
pp. 255.2-256
Author(s):  
S F Lee ◽  
J Beattie ◽  
M O'Connor ◽  
P Komessarof ◽  
M Gold ◽  
...  
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Advance Care Planning ◽  
Clinical Decision Making ◽  
Clinical Decision ◽  
Care Planning ◽  
Advance Care
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