scholarly journals THE EXAMINATION OF DETERMINANTS AND BARRIERS TO END-OF-LIFE DECISION MAKING AND PLANNING

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S236-S237
Author(s):  
Brittany E Gaines ◽  
Debra J Dobbs

Abstract As individuals are living longer, in many cases with chronic diseases, there is an increased focus on end-of-life (EOL) planning and decision making. This includes a broad spectrum of choices including advance care planning (ACP) and turning to palliative care or hospice care. Although there has been an increase in palliative and hospice care enrollment and ACP engagement over the past decade, participation remains low for certain subgroups of the population. The purpose of this symposium is to offer insight into reasons for these varying rates of engagement by exploring determinants and barriers to EOL decision making and planning and by examining caregiver knowledge of EOL decision making and planning from the service provider perspective. The first three studies examine various types of influences in EOL decision making and planning. Inoue and colleagues explore factors associated with the length of hospice stay, and Gaines and colleagues examine the impact of environmental characteristics in ACP. Ornstein and colleagues use Denmark registry data to assess the role of kinlessness at the time of death in EOL decision making and healthcare utilization. The final presentation by Noh and colleagues examines how service providers in rural areas perceive community residents’ knowledge of ACP and palliative care. The discussion following these presentations will compare findings across different forms of EOL decision making and planning, consider the impact of the varying methodological approaches used, and highlight implications of these works for potential interventions and policies related to EOL decision making and planning.

Author(s):  
Simon Chapman ◽  
Ben Lobo

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.


2018 ◽  
Vol 26 (6) ◽  
pp. 1680-1695 ◽  
Author(s):  
Pablo Hernández-Marrero ◽  
Emília Fradique ◽  
Sandra Martins Pereira

Background: Nurses are the largest professional group in healthcare and those who make more decisions. In 2014, the Committee on Bioethics of the Council of Europe launched the “Guide on the decision-making process regarding medical treatment in end-of-life situations” (hereinafter, Guide), aiming at improving decision-making processes and empowering professionals in making end-of-life decisions. The Guide does not mention nurses explicitly. Objectives: To analyze the ethical principles most valued by nurses working in palliative care when making end-of-life decisions and investigate if they are consistent with the framework and recommendations of the Guide; to identify what disputed/controversial issues are more frequent in these nurses’ current end-of-life care practices. Design: Qualitative secondary analysis. Participants/context: Three qualitative datasets including 32 interviews from previous studies with nurses working in palliative care in Portugal. Ethical consideration: Ethical approval was obtained from the Ethics Research Lab of the Instituto de Bioética (Ethics Research Lab of the Institute of Bioethics) (Ref.04.2015). Ethical procedures are thoroughly described. Findings: All participant nurses referred to autonomy as an ethical principle paramount in end-of-life decision-making. They were commonly involved in end-of-life decision-making. Palliative sedation and communication were the most mentioned disputed/controversial issues. Discussion: Autonomy was highly valued in end-of-life care and decision-making. Nurses expressed major concerns in assessing patients’ preferences, wishes, and promoting advance care planning. Nurses working in palliative care in Portugal were highly involved in end-of-life decision-making. These processes embraced a collective, inclusive approach. Palliative sedation was the most mentioned disputed issue, which is aligned with previous findings. Communication also emerged as a sensitive ethical issue; it is surprising, however, that only three nurses referred to it. Conclusion: While the Guide does not explicitly mention nurses in its content, this study shows that nurses working in palliative care in Portugal are involved in these processes. Further research is needed on nurses’ involvement and practices in end-of-life decision-making.


2021 ◽  
Author(s):  
Elizabeth W. Tindal ◽  
Daithi S. Heffernan ◽  
Tareq Kheirbek ◽  
Andrew Stephen ◽  
Stephanie N. Lueckel

2017 ◽  
Vol 35 (1) ◽  
pp. 166-172 ◽  
Author(s):  
Si Won Lee ◽  
Hyun Jung Jho ◽  
Ji Yeon Baek ◽  
Eun Kyung Shim ◽  
Hyun Mi Kim ◽  
...  

Background: Palliative care in outpatient setting has been shown to promote better symptom management and transition to hospice care among patients with advanced cancer. Nevertheless, specialized palliative care is rarely provided at cancer centers in Korea. Herein, we aimed to assess aggressiveness of end-of-life care for patients with metastatic colorectal cancer according to the use of outpatient palliative care (OPC) at a single cancer center in Korea. Methods: We performed a retrospective medical record review for 132 patients with metastatic colorectal cancer who died between 2011 and 2014. Fifty patients used OPC (OPC group), while 82 patients did not (non-OPC group). Indicators of aggressiveness of end-of-life care including chemotherapy use, emergency department visits, hospitalization, and utilization of hospice care were analyzed according to the use of OPC. Results: More patients in the OPC group were admitted to hospice than those in the non-OPC group (32% vs 17%, P = .047). The mean of inpatient days within 30 days of death was shorter for the OPC group than the non-OPC group (4.02 days vs 7.77 days, respectively, P = .032). There were no differences in the proportions of patients who received chemotherapy and visited the emergency department within 30 days from death. Conclusion: Among patients with metastatic colorectal cancer, OPC was associated with shorter inpatient days near death and greater hospice utilization. Further prospective studies are needed to evaluate the impact of OPC on end-of-life care in Korea.


2013 ◽  
Vol 99 (3) ◽  
pp. 216-220 ◽  
Author(s):  
J Sullivan ◽  
P Monagle ◽  
L Gillam

ObjectiveEnd-of-life decision-making is difficult for everyone involved, as many studies have shown. Within this complexity, there has been little information on how parents see the role of doctors in end-of-life decision-making for children. This study aimed to examine parents’ views and experiences of end-of-life decision-making.DesignA qualitative method with a semistructured interview design was used.SettingParent participants were living in the community.ParticipantsTwenty-five bereaved parents.Main outcomesParents reported varying roles taken by doctors: being the provider of information without opinion; giving information and advice as to the decision that should be taken; and seemingly being the decision maker for the child. The majority of parents found their child's doctor enabled them to be the ultimate decision maker for their child, which was what they very clearly wanted to be, and consequently enabled them to exercise their parental autonomy. Parents found it problematic when doctors took over decision-making. A less frequently reported, yet significant role for doctors was to affirm decisions after they had been made by parents. Other important aspects of the doctor's role were to provide follow-up support and referral.ConclusionsUnderstanding the role that doctors take in end-of-life decisions, and the subsequent impact of that role from the perspective of parents can form the basis of better informed clinical practice.


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