scholarly journals Placing the Preferences of People with Profound Intellectual and Multiple Disabilities At the Center of End-of-Life Decision Making Through Storytelling

2019 ◽  
Vol 44 (4) ◽  
pp. 267-279 ◽  
Author(s):  
Joanne Watson ◽  
Hille Voss ◽  
Melissa J. Bloomer
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Narrative Approaches ◽  
Life Planning ◽  
End Of Life Planning ◽  
Advance Care ◽  
End Of Life Decision ◽  
Decision Making Support

With a focus on the use of narrative approaches, this article is a commentary on decision-making support for people with profound intellectual and multiple disability (PIMD) at the end-of-life. Due to improved health care, people with PIMD are living longer lives than ever before. Therefore, they are increasingly facing decisions relating to end-of-life care and planning. Despite the increased attention that has been given to end-of-life planning, opportunities to have preferences responded to at the end-of-life are more likely afforded to people considered to have cognitive and decision-making capacity. Those supporting people with PIMD to plan for and make decisions about end-of-life care face several challenges. These challenges are rooted in difficulties with communication exchange between people with PIMD and their communication partners, leading to a widely held perception of decision-making incompetence for this population. In response to this challenge, this article draws on empirical research to discuss decision-making support within the context of palliative care and advance care planning, specifically for people with PIMD. It promotes decision-making support as an approach to assist supporters of people with PIMD to allow those people’s expressions of preferences to be acknowledged and acted upon at the end-of-life. The use of narrative is presented and discussed as a tool for enabling this responsiveness, specifically within the context of end-of-life 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.

Family Issues in End-of-life Decision Making and End-of-life Care

2002 ◽  
Vol 46 (2) ◽  
pp. 284-298 ◽  
Author(s):  
WILLIAM E. HALEY ◽  
REBECCA S. ALLEN ◽  
SANDRA REYNOLDS ◽  
HONGBIN CHEN ◽  
ALLISON BURTON ◽  
...  
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Family Issues ◽  
End Of Life Decision ◽  
Life Decision

scholarly journals End-of-Life Plans for African American Older Adults With Dementia

2018 ◽  
Vol 35 (10) ◽  
pp. 1314-1322 ◽  
Author(s):  
Karen O. Moss ◽  
Nancy L. Deutsch ◽  
Patricia J. Hollen ◽  
Virginia G. Rovnyak ◽  
Ishan C. Williams ◽  
...  
Keyword(s):  
Older Adults ◽  
African American ◽  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Life Care ◽  
Life Planning ◽  
Care Recipients ◽  
Life Plans ◽  
End Of Life Planning

African Americans are perceived to be least likely of all racial and ethnic groups to prepare for the end of life. However, verbal plans for the end of life are of particular importance to this population and may help understand why they are less likely to possess a formal end-of-life care planning document. The purpose of this study was to determine the number of formal and/or informal end-of-life care plans that existed among a convenience sample of African American older adults with dementia. For this descriptive study, data were collected from African American family caregivers (N = 65) of older adults with dementia. Descriptive statistics were conducted. Caregivers in this sample reported high rates of formal and/or informal end-of-life plans for their care recipients. Agency forms (power of attorney, health-care surrogate, or guardianship forms) had been obtained by 74% of the care recipients, while 63% of them possessed a formal end-of-life care planning document. All combined, 88% of the caregivers possessed at least 1 document or verbal information concerning end-of-life care for their care recipient or at least there was an assigned surrogate. Although limited, these findings reflect more end-of-life planning in this population than previous studies reported and could improve the quality of end-of-life outcomes in this population by giving health-care providers increased understanding of African American end-of-life planning preferences. This may, in turn, help the providers to inform and educate these care recipients and their family caregivers.

scholarly journals A framework for resolving disagreement during end of life care in the critical care unit

2010 ◽  
Vol 33 (4) ◽  
pp. 240 ◽  
Author(s):  
Karen Choong ◽  
Cynthia Cupido ◽  
Erin Nelson ◽  
Donald M Arnold ◽  
Karen Burns ◽  
...  
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Critical Care ◽  
Conflict Resolution ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Care Providers ◽  
End Of Life Decision ◽  
Life Decision

Background: End-of-life decisions regarding the administration, withdrawal or withholding of life-sustaining therapy in the critical care setting can be challenging. Disagreements between health care providers and family members occur, especially when families believe strongly in preserving life, and physicians are resistant to providing medically “futile” care. Such disagreements can cause tension and moral distress among families and clinicians. Purpose: To outline the roles and responsibilities of physicians, substitute decision makers, and the judicial system when decisions must be made on behalf of incapable persons, and to provide a framework for conflict resolution during end-of-life decision-making for physicians practicing in Canada. Source: We used a case-based example to illustrate our objectives. We employed a comprehensive approach to understanding end-of-life decision making that included: 1) a search for relevant literature; 2) a review of provincial college policies; 3) a review of provincial legislation on consent; 4) a consultation with two bioethicists and 5) a consultation with two legal experts in health law. Principal Findings: In Canada, laws about substitute decision-making for health care are primarily provincial or territorial. Thus, laws and policies from professional regulatory bodies on end-of-life care vary across the country. We tabulated the provincial college policies on end-of-life care and the provincial legislation on consent and advance directives, and constructed a 10-step approach to conflict resolution. Conclusion: Knowledge of underlying ethical principles, understanding of professional duties, and adoption of a process for mediation and conflict resolution are essential to ensuring that physicians and institutions act responsibly in maintaining a patients’ best interests in the context of family-centred care.

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.

End-of-life care in the intensive care unit: a challenge for nurses

2001 ◽  
Vol 10 (4) ◽  
pp. 230-237 ◽  
Author(s):  
PA Miller ◽  
S Forbes ◽  
DK Boyle
Keyword(s):  
Decision Making ◽  
Intensive Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Nursing Practice ◽  
Care Planning ◽  
Life Care ◽  
Cultural Issues ◽  
End Of Life Decision ◽  
Life Decision

Results from several research studies combined with increasing public tensions surrounding physician-assisted suicide have fueled a growing awareness of the inadequacies of end-of-life care. Investigators also suggest that intensive care unit nurses have a limited role in end-of-life decision making and care planning. This article explores cultural issues influencing end-of-life care in intensive care units, explores factors surrounding the limited involvement of critical care nurses in end-of-life decision making and care planning, and offers recommendations for changing nursing practice. Because improving end-of-life care will require cultural changes, an understanding of the cultural issues involved is needed. Recommendations for changing nursing practice include a model of end-of-life care that incorporates the goals of both cure and comfort care, as well as a shared decision-making process. Nurses are essential to improving end-of-life care in today's intensive care units.

Beyond the hour of death: Family experiences of grief and bereavement following an end-of-life hospitalization in the intensive care unit

2020 ◽  
pp. 136345932094647
Author(s):  
Julia I Bandini
Keyword(s):  
Intensive Care Unit ◽  
Decision Making ◽  
Intensive Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Family Members ◽  
Life Care ◽  
Family Experiences ◽  
End Of Life Decision ◽  
Life Decision

End-of-life decision-making is an important area of research, and few sociological studies have considered family grief in light of end-of-life decision-making in the hospital. Drawing on in-depth interviews with family members in the intensive care unit (ICU) during an end-of-life hospitalization and into their bereavement period up to six months after the death of the patient, this article examines bereaved family members’ experiences of grief by examining three aspects from the end-of-life hospitalization and decision-making in the ICU that informed their subsequent bereavement experiences. First, this article explores how the process of advance care planning (ACP) shaped family experiences of grief, by demonstrating that even prior informal conversations around end-of-life care outside of having an advance directive in the hospital was beneficial for family members both during the hospitalization and afterwards in bereavement. Second, clinicians’ compassionate caring for both patients and families through the “little things” or small gestures were important to families during the end-of-life hospitalization and afterwards in bereavement. Third, the transition time in the hospital before the patient’s death facilitated family experiences of grief by providing a sense of support and meaning in bereavement. The findings have implications for clinicians who provide end-of-life care by highlighting salient aspects from the hospitalization that may shape family grief following the patient’s death. Most importantly, the notion that ACP as a social process may be a “gift” to families during end-of-life decision-making and carry through into bereavement can serve as a motivator to engage patients in ACP.

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