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.

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 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.

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.

Challenges faced by patients, relatives and clinicians in end-stage dementia decision-making: a qualitative study of swallowing problems

2020 ◽  
pp. medethics-2020-106222
Author(s):  
Joseph Dimech ◽  
Emmanuel Agius ◽  
Julian C Hughes ◽  
Paul Bartolo
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Ethical Issues ◽  
Tube Feeding ◽  
Care Plan ◽  
Term Care ◽  
Swallowing Problems ◽  
Swallowing Difficulties ◽  
Life Threatening ◽  
End Stage

BackgroundDecision-making in end-stage dementia (ESD) is a complex process involving medical, social, legal and ethical issues. In ESD, the person suffers from severe cognitive problems leading to a loss of capacity to decide matters regarding health and end-of-life issues. The decisional responsibility is usually passed to clinicians and relatives who can face significant difficulty in making moral decisions, particularly in the presence of life-threatening swallowing problems.AimThis study aimed to understand the decision-making processes of clinical teams and relatives in addressing life-threatening swallowing difficulties in ESD in long-term care in Malta.MethodThe study followed a qualitative approach where six case studies, involving six different teams and relatives of six different patients, were interviewed retrospectively to understand their decision-making in connection with the management of swallowing difficulties in ESD. Data were collected through semistructured interviews with each stakeholder. All data were transcribed and subjected to thematic analysis.ResultsFour themes were identified: the vulnerability of patients in dementia decision-making; the difficult role of relatives in decision-making; the decisional conflict between aggressive care through tube feeding versus oral comfort feeding; a consensus-building decision-making process as ideal to facilitate agreement and respect for patient’s dignity.ConclusionDecision-making to manage swallowing difficulties in ESD is a challenging process, which involves an interpretation of personal values, beliefs, patient preferences, care needs and clinical practice. Better communication between clinicians and relatives in dementia helps promote agreement between stakeholders leading to a care plan that respects the dignity of patients at their end of life.

Treatment preferences and advance care planning at end of life: The role of ethnicity and spiritual coping in cancer patients

2005 ◽  
Vol 30 (2) ◽  
pp. 174-179 ◽  
Author(s):  
Gala True ◽  
Etienne J. Phipps ◽  
Leonard E. Braitman ◽  
Tina Harralson ◽  
Diana Harris ◽  
...  
Keyword(s):  
End Of Life ◽  
Cancer Patients ◽  
Advance Care Planning ◽  
Spiritual Coping ◽  
Treatment Preferences ◽  
Care Planning ◽  
Advance Care
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