scholarly journals Multidisciplinary Clinicians and the Relational Autonomy of Persons with Neurodegenerative Disorders and an Advance Care Plan: A Thematic Analysis

2021 ◽  
Vol Volume 14 ◽  
pp. 3385-3398
Author(s):  
Denise Patricia Craig ◽  
Robin Ray ◽  
Desley Harvey ◽  
Mandy Shircore
2020 ◽  
Vol 8 (11) ◽  
Author(s):  
Charlie Corke ◽  
Stella-May Gwini ◽  
Sharyn Milnes ◽  
Ben Jong ◽  
Neil Orford

Faced with a high likelihood of poor outcome treatment choice is difficult and few people are certain about what they would, or would not, want. Recognising this we sought to explore how individuals react to hypothetical choices made on their behalf by surrogate decision-makers. We used an online survey, using a hypothetical scenario involving a 95% chance of poor outcome and 5% chance of good outcome. There were 510 participants. Most (63%) expressed uncertainty regarding preference for treatment. 37% expressed certainty (12% certainly wanting treatment and 25% certainly not wanting treatment). Seventy seven percent indicated they would be understanding or pleased if the surrogate chose to treat, while 92% were understanding or pleased with a decision not to treat by a surrogate decision maker. Patients who had expressed ‘certain’ wishes when presented with the scenario (either certainly wanting or certainly not wanting treatment) were more likely to be angry/upset when surrogates made the opposite decision. Those who had completed an Advance Care Plan (ACP) were more likely to be angry/upset when these wishes were not followed. This finding suggests it may be unrealistic to expect surrogate decision-makers to identify ‘what the patient would want’ as a binary choice between consenting to treatment or refusing treatment when chances are poor and the decision is difficult. Asking surrogates to identify choices that they believe would be likely to make the person angry or upset might be more appropriate and more effective. Most people were understanding of decisions made by surrogates (whether these matched their preference or not). This finding should be used to reassure surrogates who are required to make difficult decisions. Additionally, factors associated with patient upset/anger at surrogate treatment decisions were identified. This most commonly included those patients who had documented wishes in an Advance Care Plan that was not followed.


2017 ◽  
Vol 1 (suppl_1) ◽  
pp. 158-159
Author(s):  
K.D. Yuk ◽  
H. Ming Ma ◽  
K. Au ◽  
M. Leung ◽  
J. Ng ◽  
...  

Author(s):  
Nola M. Ries ◽  
Maureen Douglas ◽  
Jessica Simon ◽  
Konrad Fassbender

Advance care planning (ACP) is the process of thinking about, discussing and documenting one’s preferences for future health care. ACP has important benefits: people who have a written directive are more likely to receive care that accords with their preferences, have fewer hospitalizations, and die in their preferred location. This article focuses on the important role that legal professionals have in advising and assisting clients with ACP. Studies report that people who have a written advance care plan are more likely to have received assistance in preparing the document from a lawyer than from a doctor. Yet virtually no research engages with the legal profession to understand lawyers’ attitudes, beliefs, and practices in this important area. This article starts to fill this gap by reporting the findings of a survey of lawyers in the province of Alberta. The results reveal lawyers’ practices in relation to ACP, their perceptions of their professional role and factors that support or hinder lawyers in working with clients on ACP, and their preferences for resources to assist them in helping their clients. To the authors’ knowledge, this is the first survey of lawyers on their practices in relation to ACP.


2018 ◽  
Vol 2 (suppl_1) ◽  
pp. 530-530
Author(s):  
R Tkatch ◽  
J Draklellis ◽  
J Maycroft ◽  
J Schaeffer ◽  
T Martin

2020 ◽  
Vol 29 (17) ◽  
pp. 1010-1015
Author(s):  
Aby Mitchell ◽  
Scott Elbourne

This article discusses the practicalities of syringe drivers (subcutaneous continuous infusion pumps) for symptom control in patients requiring palliative or end-of-life care, which may form part of an advance care plan. It includes a discussion of palliative and end-of-life care, advance care planning, and when a syringe driver might be beneficial for the patient. It also provides step-by-step clinical guidance on setting up a syringe driver.


2015 ◽  
Vol 5 (Suppl 2) ◽  
pp. A75.3-A76
Author(s):  
R Chong ◽  
J Eng Ramdat ◽  
R Ng ◽  
H Chau ◽  
YZ May ◽  
...  

2016 ◽  
Vol 40 (4) ◽  
pp. 391 ◽  
Author(s):  
Ian A. Scott ◽  
Nalaka Rajakaruna ◽  
Darshan Shah ◽  
Leyton Miller ◽  
Elizabeth Reymond ◽  
...  

Objective The aim of the present study was to develop, implement and explore the effects of a program in advance care planning (ACP) within a tertiary hospital general medicine service. Methods Before–after exploratory mixed-methods analysis was conducted of an ACP program comprising seven components designed to overcome well-documented barriers to ACP in clinical practice. The results of pre-ACP program audits performed in June 2014 were compared with those of post-ACP audits performed over 5 months from July to November 2014. The main outcome measure was the number of advance care plans completed in patients considered eligible for ACP based on a life expectancy of 12 months or less as assessed by two prognostication instruments. Questionnaire surveys ascertained staff perceptions of ACP and the usefulness of training and resources in ACP. Results Pre-ACP program analysis of 166 consecutive patients deemed eligible for ACP revealed that only 1% had a documented advance care plan. Following ACP implementation, 115 of 215 (53%) potentially eligible patients were considered able to participate in ACP discussions and were approached to do so before discharge, of whom 89 (77.4%) completed an advance care plan, whereas 26 (23.6%) declined. This equated to an overall completion rate for all potentially eligible patients of 41% compared to 1% pre-ACP (P < 0.001). Major barriers to ACP perceived by at least 30% of questionnaire respondents included the reluctance of patients and family to discuss ACP, insufficient time to initiate or complete ACP, patient and/or family factors that rendered ACP impractical, inadequate communication skills around end-of-life issues, confusion about who was primarily responsible for conducting ACP and difficulty using ACP documentation forms. Enabling factors included dedicated ACP workshops, facilitator and resource packages for staff, and ACP brochures for patients and family. Conclusion A multifaceted ACP program in a general medicine service led to completion of an advance care plan in more than three of four patients considered eligible for, and who participated in, ACP. However, although program components were tailored to overcome known barriers to ACP, staff indicated ongoing difficulties, with less than half of ACP-eligible patients completing advance care plans. What is known about this topic? Advance care planning is increasingly recognised as an important part of hospital care for older patients with advanced chronic disease. However, research indicates that ACP discussions are rare in hospital settings because of various barriers that are not adequately addressed in the design of ACP programs. What does this paper add? The present exploratory study of the development, implementation and evaluation of an ACP program in a tertiary hospital general medicine service shows that program components designed to overcome specific barriers to ACP discussions was associated with a >75% completion rate of advance care plans among ACP-eligible patients who participated in ACP discussions. Dedicated staff training and resources in ACP, employment of an ACP facilitator and ready access to ACP documentation forms were important enabling strategies. What are the implications for practitioners? Hospital units caring for significant numbers of older patients with limited life expectancy can implement ACP programs that help normalise ACP discussions within routine clinical care.


2020 ◽  
Author(s):  
Laura Panozzo ◽  
Pam Harvey ◽  
Meagan-Jane Adams ◽  
Dennis O'Connor ◽  
Bernadette Ward

Abstract Background Doctors, particularly general practitioners, play a significant role in assisting patients to create advance care plans. When medically indicated, these documents are important tools to promote congruence between end-of-life care and patient’s personal preferences. Despite this, little is known regarding the availability of these documents in hospitals. The aim of this study was to identify the proportion of people who died in hospital without an advance care plan and how many of these had advance care planning (ACP) documents in their general practice records.Methods A retrospective cohort study was conducted of patient hospital records with manual linkage to general practice records. The large regional hospital in Victoria, Australia has a catchment population in excess of 300,000 people. The study sample was patients aged 75 years and over who died in the hospital between 1 January 2016 and 31 December 2017. The hospital records of these patients were examined to identify those which did not have a system alert for ACP documents on the file. Alerted ACP documents were limited to those legislated in the state of Victoria: advance care plan, Enduring Power of Attorney (Medical Treatment) or Enduring Power of Guardianship. Where no ACP document system alert was found in the hospital record, the patient’s nominated general practice was consented to participate and the corresponding general practice record was examined. Data were analysed using descriptive statistics.Results Of the 406 patients who died in hospital, 76.1% (309) did not have a system alert for any ACP document. Of the 309 hospital records without a system alert, 144 (46.7%) corresponding general practice records were examined. Of these, 14.6% included at least one ACP document, including four advance care plans, that were not available in hospital.Conclusions Unless ACP documents are consistently communicated from general practice, patient’s preferences may be unknown during end-of-life care. It is important that both doctors and patients are supported to use connected electronic health records to ensure that documents are readily available to healthcare staff when they are required.


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