Effects of Visual Aids for End-of-Life Care on Decisional Capacity of People With Dementia

2020 ◽  
Vol 29 (1) ◽  
pp. 185-200 ◽  
Author(s):  
Wan-Zu D. Chang ◽  
Michelle S. Bourgeois
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
End Of Life Care ◽  
External Support ◽  
Life Care ◽  
Visual Aids ◽  
Decisional Capacity ◽  
People With Dementia ◽  
Decision Making Capacity ◽  
Moderate Dementia

Purpose This study evaluated the decision-making capacity of persons with mild and moderate dementia on end-of-life care when using visual aids. A secondary purpose was to learn whether the judges naive to the experimental conditions would rate participants' decisional abilities as better when augmented by visual aids, thereby validating the behavioral changes due to the use of these external support. Method Twenty older adults with mild and moderate dementia demonstrated Understanding, Expressing a Choice, Reasoning, and Appreciation of 2 medical vignettes under 2 counterbalanced conditions: verbal alone or verbal with visual aids. Transcripts were analyzed and scored to measure decisional skills. Twelve judges rated participants' decisional abilities using a 7-point Likert scale. Results Participants demonstrated significantly better overall decisional capacity in Understanding, Reasoning, and Appreciation when supported by visual aids during the decision-making process. No significant differences between conditions were found in Expressing a Choice, the decisional skill Logical Sequence under Reasoning, and Acknowledgment under Appreciation. Overall, the judges' ratings validated these outcomes; the judges' ratings reflected greater agreement in the visual condition than in the verbal condition. Conclusions Findings indicated that visual aids (a) improved the decision-making capacity of individuals with dementia in comprehending medical information, employing supportive reasons, and relating this information to his or her own situation and (b) contain the potential for judges who majored or are majoring in speech-language pathology to reach a stronger consensus when determining the decision-making capacity of individuals with dementia.

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.

Depression and the Desire to Die Near the End of Life

2015 ◽  
Author(s):  
Nathan Fairman ◽  
Scott A Irwin
Keyword(s):  
Decision Making ◽  
Suicidal Ideation ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Decisional Capacity ◽  
Hastened Death ◽  
Desire To Die ◽  
Clinical Conditions ◽  
The Relationship

This chapter examines how depression may affect a patient’s ability to make life-shortening decisions within the setting of care near the end of life, as well as a clinician’s willingness to support the patient’s preferences (that is, respecting his autonomy). It considers how the suspicion of depression can make the physician pause even when the obvious choice would be to support the patient’s decision. It also describes some of the defining features of depression, including hopelessness, suicidal ideation, and desire for hastened death. The chapter first reviews depression and similar clinical conditions in the context of end-of-life care before discussing the construct of capacity and the elements of its assessment. It then considers evidence on the relationship between depression and decisional capacity before concluding with suggestions to help guide decision-making.

Completion of Limitation of Medical Treatment forms by junior doctors for patients with dementia: clinical, medicolegal and education perspectives

2017 ◽  
Vol 41 (5) ◽  
pp. 519
Author(s):  
Jaclyn Yoong ◽  
Aleece MacPhail ◽  
Gael Trytel ◽  
Prashanti Yalini Rajendram ◽  
Margaret Winbolt ◽  
...  
Keyword(s):  
Decision Making ◽  
Medical Education ◽  
Medical Treatment ◽  
End Of Life ◽  
End Of Life Care ◽  
Essential Element ◽  
Junior Doctors ◽  
Life Care ◽  
People With Dementia ◽  
Education Personnel

Objective Limitation of Medical Treatment (LMT) forms are an essential element of end-of-life care. Decision making around LMT is complex and often involves patients with dementia. Despite the complexity, junior doctors frequently play a central role in completing LMT forms. The present study sought perspectives from a range of stakeholders (hospital clinicians, medical education personnel, legal and advocacy staff) about junior doctors’ roles in completing LMT forms in general and for patients with dementia. Methods Qualitative data were gathered in semi-structured interviews (SSI) and theoretical concepts were explored in roundtable discussion (RD). Participants were recruited through purposive and convenience sampling drawing on healthcare and legal personnel employed in the public hospital and aged care systems, selected from major metropolitan hospitals, healthcare and legal professional bodies and advocacy organisations in Victoria, Australia. The contents of the SSIs and RD were subject to thematic analysis using a framework approach. Data were indexed according to the topics established in the study aim; categories were systematically scrutinised, from which key themes were distilled. Results Stakeholders reported that completing LMT forms was difficult for junior doctors because of a lack of medical and legal knowledge, as well as clinical inexperience and inadequate training. Healthcare organisations (HCOs) either lacked policies about the role of junior doctors or had practices that were discordant with policy. In this process, there were substantial gaps pertaining to patients with dementia. Recommendations made by the study participants included the provision of supervised clinical exposure and additional training for junior doctors, strengthening HCO policies and explicit consideration of the needs of patients with dementia. Conclusions LMT forms should be designed for clarity and consistency across HCOs. Enhancing patient care requires appropriate and sensitive completion of LMT. Relevant HCO policy and clinical practice changes are discussed herein, and recommendations are made for junior doctors in this arena, specifically in the context of patients with dementia. What is known about the topic? Junior doctors continue to play a central role in LMT orders, a highly complex decision-making task that they are poorly prepared to complete. LMT decision making in Australia’s aging population and for people with dementia is especially challenging. What does this paper add? A broad range of stakeholders, including hospital clinicians, medical education personnel and legal and advocacy staff, identified ongoing substantial gaps in education and training of junior doctors (despite what is already known in the literature). Furthermore, LMT decision making for patients with dementia is not explicitly considered in policy of practice. What are the implications for practitioners? Current policy and practice are not at the desired level to deliver appropriate end-of-life care with regard to LMT orders, especially for patients with dementia. Greater involvement of executives and senior clinicians is required to improve both practice at the bed side and the training and support of junior doctors, as well as creating more robust policy.

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 Addressing Decision Making on End of Life Care for People with Dementia

2017 ◽  
Vol 03 (03) ◽  
Author(s):  
Jones K ◽  
Birchely G ◽  
Clare L ◽  
Huxtable R ◽  
Walter T ◽  
...  
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
People With Dementia

scholarly journals Conversations About Death and Dying, End-of-Life Care Plans and Preferences Between Aging Parents and Adult Children

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 417-417
Author(s):  
Hyo Jung Lee ◽  
Jacobbina Jin Wen Ng
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Adult Children ◽  
End Of Life Care ◽  
Death And Dying ◽  
Family Members ◽  
Life Care ◽  
Joint Decision ◽  
Aging Parents ◽  
Care Plans

Abstract This study aims to investigate whether attitude and perception on late-life death and dying, end-of-life care plans and preferences could be better understood from current values shared between aging parents and their adult children in the multi-cultural city-bound country, Singapore. We are in the process of interviewing 20 aging parent-adult child dyads. Up to date, six semi-structured interviews were completed and transcribed. We performed Content analysis to analyze the transcripts. Preliminary findings showed that both aging parents and adult children rarely discussed this issue, although parents had their own plans or preferences. The major barriers against open conversations about death and dying of aging parents include: the perception of not-yet time to talk about this issue (without knowing when the right time is) and tendency to have conversations about death in tandem with finances, but not death itself. Although specific end-of-life care plans or arrangements were not thought out thoroughly, aging parents expressed a high level of trust and reliance on close family members’ decisions regarding their end-of-life care. They tended to agree on joint decision-making process within family, even though adult children had no or unmatched ideas about their aging parents’ end-of-life wishes. This did not necessarily align with previous findings in Western countries, underscoring individuals’ control over their own death and dying process. Open conversation within family, family-involved advance care planning, or joint decision-making processes may be warranted to promote quality of life and death in older Singaporeans and well-being of their family members of all ages.

scholarly journals Compassion in healthcare – lessons from a qualitative study of the end of life care of people with dementia

2013 ◽  
Vol 106 (12) ◽  
pp. 492-497 ◽  
Author(s):  
Jacqueline Crowther ◽  
Kenneth CM Wilson ◽  
Siobhan Horton ◽  
Mari Lloyd-Williams
Keyword(s):  
Qualitative Study ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
People With Dementia
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