Planning End-of-Life Care for Patients with Dementia: Roles of Families and Health Professionals

2001 ◽  
Vol 42 (4) ◽  
pp. 273-291 ◽  
Author(s):  
Charles E. Gessert ◽  
Sarah Forbes ◽  
Mercedes Bern-Klug
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Health Professionals ◽  
End Of Life Care ◽  
Family Members ◽  
Care Planning ◽  
Life Care ◽  
Dementia Patients ◽  
Advance Care ◽  
Surrogate Decision

We examined families' end-of-life decision making and their interactions with health professionals. Twenty-eight family members of institutionalized dementia patients participated in four focus groups. We found that participating family members were not well prepared for their decision-making roles, and that they: 1) experienced substantial burdens and loss in caring for institutionalized elders; 2) had limited understanding of the natural progression of dementing conditions; 3) were uncomfortable in setting goals for their relatives' end-of-life care; 4) had little experience with death, and were ambivalent about the anticipated death of their relative; and (5) reported that they had little substantive communication with health professionals regarding end-of-life care planning. We concluded that many of the needs of such families could be addressed through improved application of the principles of advance care planning, including regular structured discussions, involvement of surrogate decision-makers, and anticipation of clinical decisions. Health professionals should take the lead in ‘normalizing’ the discussion of death.

Nursing Home Resident, Family, and Staff Perspectives on Hospital Transfers for End-of-Life Care

2021 ◽  
pp. 003022282199770
Author(s):  
Janet Sopcheck ◽  
Ruth M. Tappen
Keyword(s):  
Emergency Department ◽  
Nursing Home ◽  
End Of Life ◽  
End Of Life Care ◽  
Family Members ◽  
Terminally Ill ◽  
South Florida ◽  
Care Planning ◽  
Life Care ◽  
Advance Care

Residents who are terminally ill often experience transfers to the emergency department resulting in hospitalizations, which may be potentially avoidable with treatment in the nursing home. This qualitative study explored the perspectives of 15 residents, 10 family members, and 20 nursing home staff regarding end-of-life care and the circumstances prompting resident transfers. Data analysis of participant interviews conducted January to May 2019 in a South Florida nursing home identified four themes related to transfer to the hospital: time left to live, when aggressive treatments would be unavailing, not knowing what the nursing home can do, and transfer decisions are situation-dependent. Study findings underscore the importance of increasing resident and family awareness of treatments available in the nursing home and person-centered advance care planning discussions. Further research should explore the reasons for residents’ and family members’ choice of aggressive therapies and their goals for care at the end of life.

Association Between Advance Directives and Quality of End-of-Life Care (DRAFT)

2018 ◽  
Author(s):  
Donna S. Zhukovsky
Keyword(s):  
End Of Life ◽  
Advance Directives ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Family Members ◽  
Care Planning ◽  
Life Care ◽  
Care Providers ◽  
Advance Care

Advance care planning is a complex process whereby an individual reflects on future care options at the end of life after reflecting on his or her values and goals for care. These values, goals, and preferences are then communicated to key stakeholders in the process (i.e., proxy and surrogate decision-makers, family members, and health care providers). It is unclear how well the completion of advance directives and a written outcome of advance care planning affect desired patient outcomes. In this chapter, a critical review is provided of a mortality follow-back survey that evaluates the association of advance directives with quality of end-of-life care from the perspective of bereaved family members. Study strengths and limitations are described, as are directions for future research.

scholarly journals Advance care planning in Asian culture

2020 ◽  
Vol 50 (9) ◽  
pp. 976-989 ◽  
Author(s):  
Shao-Yi Cheng ◽  
Cheng-Pei Lin ◽  
Helen Yue-lai Chan ◽  
Diah Martina ◽  
Masanori Mori ◽  
...  
Keyword(s):  
Health Care ◽  
Decision Making ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Patient Autonomy ◽  
Care Planning ◽  
Life Care ◽  
Asian Countries ◽  
Advance Care

Abstract Ageing has been recognized as one of the most critically important health-care issues worldwide. It is relevant to Asia, where the increasing number of older populations has drawn attention to the paramount need for health-care investment, particularly in end-of-life care. The advocacy of advance care planning is a mean to honor patient autonomy. Since most East Asian countries are influenced by Confucianism and the concept of ‘filial piety,’ patient autonomy is consequently subordinate to family values and physician authority. The dominance from family members and physicians during a patient’s end-of-life decision-making is recognized as a cultural feature in Asia. Physicians often disclose the patient’s poor prognosis and corresponding treatment options to the male, family member rather to the patient him/herself. In order to address this ethical and practical dilemma, the concept of ‘relational autonomy’ and the collectivism paradigm might be ideally used to assist Asian people, especially older adults, to share their preferences on future care and decision-making on certain clinical situations with their families and important others. In this review article, we invited experts in end-of-life care from Hong Kong, Indonesia, Japan, South Korea, Singapore and Taiwan to briefly report the current status of advance care planning in each country from policy, legal and clinical perspectives. According to the Asian experiences, we have seen different models of advance care planning implementation. The Asian Delphi Taskforce for advance care planning is currently undertaken by six Asian countries and a more detailed, culturally sensitive whitepaper will be published in the near future.

How is advance care planning conceptualised in Australia? Findings from key informant interviews

2011 ◽  
Vol 35 (2) ◽  
pp. 197 ◽  
Author(s):  
Joel J. Rhee ◽  
Nicholas A. Zwar
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
Health Professionals ◽  
End Of Life Care ◽  
Aged Care ◽  
Treatment Preferences ◽  
Successful Implementation ◽  
Care Planning ◽  
Life Care ◽  
Advance Care

Objective. Advance Care Planning (ACP) has been gaining prominence as an important component of good end-of-life care. This study explored how ACP is conceptualised by stakeholder organisations and clinicians involved in aged care and end-of-life care in Australia, in particular their views on the aim, appropriate context and settings for ACP, and how ACP should be facilitated. Participants. Twenty-three participants including expert clinicians and representatives of government organisations, professional societies, consumer groups and other organisations involved in aged care and end-of-life care. Design. Qualitative descriptive analysis of semi-structured telephone interviews. Results. Most participants viewed ACP as an ongoing process aimed at enhancing an individual’s autonomy and ensuring good end-of-life care. However, there were significant differences in how this process was conceptualised. Some viewed ACP as a process undertaken by patients to define and communicate their treatment preferences. Others viewed ACP as discussions undertaken by health professionals to gain a better understanding of the patient’s values and goals in order to provide good care. Implications. Our findings highlight significant differences in how ACP is conceptualised in Australia. A shared conceptualisation and agreement on purpose is needed to ensure a successful implementation of ACP in Australia. What is known about the topic? Advance care planning (ACP) has been gaining increasing prominence both internationally and in Australia and is seen as an important component of good end-of-life care. Originally conceptualised as a document outlining a patient’s specific treatment preferences about life-sustaining treatments, ACP has been increasingly recognised in the literature as an ongoing process of discussion, communication and documentation of the patient’s wishes and values regarding end-of-life care. What does this paper add? This paper shows that most expert clinicians and representatives of key stakeholder organisations view ACP as a process that aims to enhance individual autonomy and ensure good end-of-life care. However, our findings show that they often hold contrasting views on ACP – ranging from a consumer-orientated view that sees ACP as undertaken to define and communicate their care preferences; to a care-orientated view that sees ACP as discussions led by health professionals in order to gain an understanding of patients’ values and wishes in order to provide better care. What are the implications for practitioners? Our findings highlight significant differences in how ACP is conceptualised in Australia. This can cause confusion and conflict, leading to reduced effectiveness of ACP. A shared conceptualisation and agreement on purpose is needed to ensure a successful implementation of ACP in Australia.

scholarly journals Ethical frameworks for surrogates’ end-of-life planning experiences

2016 ◽  
Vol 24 (1) ◽  
pp. 46-69 ◽  
Author(s):  
Hyejin Kim ◽  
Janet A Deatrick ◽  
Connie M Ulrich
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
End Of Life Care ◽  
Care Planning ◽  
Surrogate Decision Making ◽  
Life Care ◽  
Ethical Theories ◽  
Ethical Frameworks ◽  
Life Care Planning ◽  
Surrogate Decision

Background: Despite the growing body of knowledge about surrogate decision making, we know very little about the use of ethical frameworks (including ethical theories, principles, and concepts) to understand surrogates’ day-to-day experiences in end-of-life care planning for incapacitated adults. Objectives and Methods: This qualitative systematic review was conducted to identify the types of ethical frameworks used to address surrogates’ experiences in end-of-life care planning for incapacitated adults as well as the most common themes or patterns found in surrogate decision-making research. Findings: Seven research papers explicitly identified ethical theories, principles, or concepts, such as autonomy, substituted judgment, and best interest standards as guidelines for the research. Surrogate decision making themes included the responsibilities and goals of being a surrogate, factors influencing surrogates’ decision making, outcomes for surrogates, and an overarching theme of “wanting to do the right thing” for their loved one and/or themselves. Discussion: Understanding the complexity of surrogates’ experiences of end-of-life care planning is beyond the scope of conventional ethical frameworks. Conclusion: Ethical frameworks that address individuality and contextual variations related to decision making may more appropriately guide surrogate decision-making research that explores surrogates’ end-of-life care planning experiences.

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.

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