scholarly journals A Literature Review of Possible Barriers and Knowledge Gaps of General Practitioners in Implementing Advance Care Planning in Ireland: Experience from Other Countries

2021 ◽  
Vol 9 (2) ◽  
pp. 145-149
Author(s):  
Karendeep Somal ◽  
Tony Foley
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
General Practitioners ◽  
Care Plan ◽  
Knowledge Gaps ◽  
Decision Making Capacity ◽  
Advance Care Plan ◽  
Advance Care ◽  
Critical Appraisal Skills ◽  
Eol Care

An Advance Care Plan (ACP) is a process of decision-making concerning end of life care that embodies a patient’s values and wishes, for a time when patients are unable to make such decisions for themselves. ACPs have been employed into medical practices worldwide; however, they remain largely uncompleted by general practitioners (GPs), regardless of their benefits to patients and their families with respect to end of life (EOL) care. Furthermore, ACPs will soon be implemented into clinician practices across Ireland, as part of the Assisted Decision Making (Capacity) Act 2015. This review aims to explore the literature to examine challenges GPs may face in employing ACPs into clinical practice. An electronic search was performed through three databases: PubMed, MEDLINE, and CINAHL Plus, through which a total of eleven studies met the selection criteria. Additionally, three studies were provided by experts in the field. Thus, a total of fourteen studies were condensed and critically appraised through CASP (Critical Appraisal Skills Program), which concluded that the quality of the studies was high. Through this review, knowledge gaps and barriers for GPs regarding ACPs were identified. Barriers for implementing ACPs into practice were categorized into three major themes: barriers for the GP, barriers in the healthcare system, and barriers regarding the patient. These included insufficient time, complexity of the ACP documents themselves, uncertainty of the disease prognosis, and the ultimate fear of inducing anxiety and loss of hope in patients.

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 A case study approach to investigating end-of-life decision making in an acute health service

2013 ◽  
Vol 37 (1) ◽  
pp. 93 ◽  
Author(s):  
Heather M. Tan ◽  
Susan F. Lee ◽  
Margaret M. O'Connor ◽  
Louise Peters ◽  
Paul A. Komesaroff
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Family Involvement ◽  
Health Professionals ◽  
Care Planning ◽  
Metropolitan Hospital ◽  
Decision Making Processes ◽  
Advance Care ◽  
Eol Care

Aim. To identify end-of-life (EOL) decision making processes for patients with non-cancer illnesses in a major metropolitan hospital. Methods. A retrospective review using a case study framework of 47 randomly selected patient records over a 6-month period explored issues in EOL care planning. Results. Reviewed charts represented 53% of total deaths in the study period. All patients (aged 66–99) had co-morbid conditions. In 64%, the first record of EOL discussions occurred in the last 24 h of life. Four case groups were identified, ranging from a clear plan developed with patient/family involvement and fully implemented, to no plan with minimal patient/family involvement in decision making. Factors related to clearer EOL care planning according to expressed patient wishes included multiple previous admissions, shorter hospitalisations at EOL, living with a relative and involvement of family in decisions about care. Conclusion. This study has shown that the development and effective implementation of EOL plans is associated with the active involvement of both family members and health professionals. It also draws attention to the risks of delaying EOL discussions until late in the illness trajectory or later in life as well as pointing to challenges in acting on EOL developed outside the hospital environment. What is known about the topic? End of life (EOL) care planning has been widely discussed in some countries but research into outcomes of such programs has produced variable results both in real outcomes for patients and in satisfaction and ease of application for health professionals. Programs of advance care planning have been introduced in some Australian health services but are yet to produce definitive results. What does this paper add? This paper identifies some of the factors that appear to impact on EOL decision making processes in a major Australian metropolitan hospital for patients suffering non-cancer life-limiting illnesses. These data will facilitate the development of more effective EOL care processes in this and other similar healthcare services. What are the implications for practitioners? Clear effective processes for making EOL decisions are likely to result in better outcomes for patients, family members and practitioners. A distinctive cluster of patient circumstances may identify risk for poor advance care planning.

scholarly journals 458 - End-of-life decision-making capacity in an elderly patient with schizophrenia and terminal cancer

2020 ◽  
Vol 32 (S1) ◽  
pp. 179-179
Author(s):  
C Kotzé ◽  
JL Roos
Keyword(s):  
Decision Making ◽  
Mental Illness ◽  
End Of Life ◽  
Serious Mental Illness ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Decision Making Capacity ◽  
Advance Care ◽  
End Of Life Decision

Medical practitioners are confronted on a daily basis with decisions about patients’ capacity to consent to interventions. To address some of the pertinent issues with these assessments, the end -of-life decision-making capacity in a 72-year old lady with treatment resistant schizophrenia and terminal cancer will be discussed.In the case discussed there were differences in opinion about the patients decision-making capacity. In light of this, the role of the treating clinician and importance of health-related values in capacity assessment are highlighted. It is recommended that the focus of these assessments can rather be on practical outcomes, especially when capacity issues arise. This implies that the decision-making capacity of the patient is only practically important when the treatment team is willing to proceed against the patient’s wishes. This shifts the focus from a potentially difficult assessment to the simpler question of whether the patient’s capacity will change the treatment approach.Compared to the general population, people with serious mental illness have higher rates of physical illness and die at a younger age, but they do not commonly access palliative care services and are rarely engaged in end-of-life care discussions. Older people with serious mental illness can engage in advance care planning. Conversations about end -of-life care can occur without fear that a person’s psychiatric symptoms or related vulnerabilities will undermine the process. Clinicians are also advised to attend to any possible underlying issues, instead of focusing strictly on capacity. Routine documentation of end-of-life care preferences can support future decision making for family and clinicians at a time when patients are unable to express their decisions.More research about palliative care and advance care planning for people with serious mental illness is needed. This is even more urgent in light of the COVID-2019 pandemic, as there are potential needs for rationing of health care in the context of scarce resources. Health services should consider recommendations that advanced care planning should be routinely implemented. These recommendations should not only focus on the general population and should include patients with serious mental illness.

Specific Ethical Issues at the End of Life (DRAFT)

2018 ◽  
Author(s):  
Robert C. Macauley
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Advance Care Planning ◽  
Ethical Issues ◽  
Care Planning ◽  
High Burden ◽  
Code Status ◽  
Decision Making Capacity ◽  
Advance Care

A specific application of advance care planning has to do with determining the “code status” of a patient. Many of the terms used to document this status are misunderstood or carry unfortunate connotations, such as “DNR.” It is more appropriate to refer to a “Do Not Attempt Resuscitation” (DNAR), to emphasize the uncertainty as to whether attempted resuscitation will be successful. Code status is especially relevant to patients who “want everything,” which may include high-burden and low-benefit procedures. Time-limited trials and Do Not Escalate Treatment orders may be considered in those situations. There may also be situations when a patient’s refusal should be overridden, when the patient’s decision-making capacity is compromised.

scholarly journals Advance care planning and syringe drivers in palliative and end-of-life care

2020 ◽  
Vol 29 (17) ◽  
pp. 1010-1015
Author(s):  
Aby Mitchell ◽  
Scott Elbourne
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Symptom Control ◽  
Care Plan ◽  
Care Planning ◽  
Life Care ◽  
Advance Care Plan ◽  
Syringe Driver ◽  
Advance Care

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.

scholarly journals End-of-Life Decision-Making Capacity in Older People With Serious Mental Illness

2021 ◽  
Vol 12 ◽  
Author(s):  
Carla Kotzé ◽  
Johannes Lodewikus Roos ◽  
René Ehlers
Keyword(s):  
Decision Making ◽  
Mental Illness ◽  
Older People ◽  
End Of Life ◽  
Serious Mental Illness ◽  
Decision Making Capacity ◽  
Consent To Treatment ◽  
Advance Care ◽  
End Of Life Decision ◽  
Life Decision

Background: The study's main aim was to assess the end-of-life decision-making capacity and health-related values of older people with serious mental illness.Methods: A cross-sectional, observational study, was done at Weskoppies Psychiatric Hospital, Gauteng Province, South Africa that included 100 adults older than 60 years of age and diagnosed with serious mental illness. The Mini-Cog and a semi-structured clinical assessment of end-of-life decision-making capacity was done before a standardized interview, Assessment of Capacity to Consent to Treatment, was administered. This standardized instrument uses a hypothetical vignette to assess decision-making capacity and explores healthcare-related values.Results: The Assessment of Capacity to Consent to Treatment scores correlated (p < 0.001) with the outcomes of the semi-structured decision-making capacity evaluation. Significant correlations with impaired decision-making capacity included: lower scores on the Mini-Cog (p < 0.001); a duration of serious mental illness of 30–39 years (p = 0025); having a diagnosis of schizophrenia spectrum disorders (p = 0.0007); and being admitted involuntarily (p < 0.0001). A main finding was that 65% of participants had decision-making capacity for end-of-life decisions, were able to express their values and engage in advance care discussions.Discussion and Conclusion: Healthcare providers have a duty to initiate advance care discussions, optimize decision-making capacity, and protect autonomous decision-making. Many older patients with serious mental illness can engage in end-of-life discussions and can make autonomous decisions about preferred end-of-life care. Chronological age or diagnostic categories should never be used as reasons for discrimination, and older people with serious mental illness should receive end-of-life care in keeping with their preferences and values.

scholarly journals Developing an applied model for making decisions towards the end of life about care for someone with dementia

PLoS ONE ◽  
2021 ◽  
Vol 16 (5) ◽  
pp. e0252464
Author(s):  
Nathan Davies ◽  
Tanisha De Souza ◽  
Greta Rait ◽  
Jessica Meehan ◽  
Elizabeth L. Sampson
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
End Of Life Care ◽  
Care Plan ◽  
Decision Making Process ◽  
Life Care ◽  
Family Carers ◽  
Modified Model ◽  
People With Dementia ◽  
Advance Care

Background Many people with dementia reach the end-of-life without an advance care plan. Many are not ready to have conversations about end-of-life, and decision-making is left to their families and professionals when they no longer have capacity. Carers may benefit from further support with decision-making. To develop this support, it is important to understand the decision-making process. Aim Explore with family carers and people living with dementia the decision-making process and factors that influence decision-making in dementia end of life care, to produce a model of decision-making in the context of dementia end-of-life care. Methods Semi-structured interviews with 21 family carers and 11 people with dementia in England (2018–2019) from memory clinics, general practice and carer organisations. Interviews were analysed using thematic analysis and findings were mapped onto the Interprofessional Shared Decision Making model, refined to produce a modified model of decision-making in dementia. Results Participants described five key decisions towards the end-of-life as examples of decision making. We used these experiences to produce a modified model of decision-making in dementia end-of-life-care. The model considers the contextual factors that influence the decision-making process, including: personal preferences; advance care planning and Lasting Power of Attorney; capacity and health and wellbeing of the person with dementia; support from others and clarity of roles. The decision-making process consists of seven inter-linked stages: 1) identifying the decision maker or team; 2) sharing and exchanging information; 3) clarifying values and preferences; 4) managing and considering emotions; 5) considering the feasibility of options; 6) balancing preferred choice and the actual choice; and 7) implementation and reflecting on outcomes. Conclusions The modified model breaks down the decision-making process and attempts to simplify the process while capturing the subtle nuances of decision making. It provides a framework for conversations and supporting decisions by carers.

scholarly journals What Matters at the End of Life: A Qualitative Study of Older Peoples Perspectives in Southern Denmark

2019 ◽  
Vol 5 ◽  
pp. 233372141983019
Author(s):  
Stine Hanson ◽  
Mikkel Brabrand ◽  
Annmarie T. Lassen ◽  
Jesper Ryg ◽  
Dorthe S. Nielsen
Keyword(s):  
Decision Making ◽  
Focus Groups ◽  
End Of Life ◽  
Care Plan ◽  
Treatment Preferences ◽  
Significant Life ◽  
Advance Care ◽  
Significant Life Experiences ◽  
Depth Interviews ◽  
What Matters

What matters at the end of life (EOL) among the older population in Denmark is poorly investigated. We used focus groups and in-depth interviews, to identify perspectives within the EOL, along with what influences resuscitation, decision making, and other treatment preferences. We included eligible participants aged ≥65 years in the Region of Southern Denmark. Five focus groups and nine in-depth interviews were conducted, in total 31 participants. We found a general willingness to discuss EOL, and experiences of the process of dying were present among all participants. Three themes emerged during the analysis: (a) Being independent is crucial for the future, (b) Handling and talking about the EOL, and (c) Conditions in Everyday Life are Significant. Life experiences seemed to affect the degree of reflection of EOL and the decision-making process. Knowing your population of interest is crucial, when developing an approach or using an advance care plan from another setting.

Advance Care Planning—A Primer

2014 ◽  
Vol 5 (1) ◽  
Author(s):  
Karishma Taneja ◽  
Puneet Sayal
Keyword(s):  
Advance Care Planning ◽  
Healthcare Professionals ◽  
Healthcare Providers ◽  
Decision Makers ◽  
Care Plan ◽  
Care Planning ◽  
Advance Care Plan ◽  
Advance Care ◽  
Substitute Decision Makers ◽  
Eol Care

Advance Care Planning (ACP) is the process by which individuals make decisions that can guide their future healthcare if they become incompetent. Creation of an Advance Care Plan should involve discussions with healthcare providers and substitute decision makers (SDM). ACP can assist individuals, their families, and healthcare professionals in planning for future and end-of-life (EOL) care. Recent research suggests that ACP can increase discussions about EOL preferences and improve the concordance between patient preferences and their EOL care. More than 50% of Canadians have not completed an Advanced Care Plan. This may be due to a variety of reasons, however it is possible that the community does not have enough knowledge about healthcare options that can be provided in the hospitals. Current research is focused on identifying barriers and facilitators to ACP, as well as implementing methods for incorporating it during standard medical care. Various stakeholders have identified ACP as a priority, and in order to raise awareness, April 16th has been designated as National Advance Care Planning Day in Canada

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.

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