scholarly journals Can there be a Disability Studies Theory of "End-of-Life Autonomy?"

2011 ◽  
Vol 31 (4) ◽  
Author(s):  
Harold Braswell
Keyword(s):  
End Of Life ◽  
Disability Studies ◽  
Terminal Illness ◽  
Medical Condition ◽  
Terminally Ill ◽  
Persons With Disabilities ◽  
Self Development ◽  
Relational Process

<p>Keywords</p><p>ADA, autonomy, bioethics, end-of-life, euthanasia, terminal illness</p><p>Abstract</p><p>In this article, I examine the possibility of a disability studies theory of "end-of-life autonomy." I define "end-of-life autonomy" as an individual's legally protected and medically enacted decision to die in response to a serious incurable medical condition. Disability studies scholars criticize such autonomy when it is exercised by persons with disabilities, but are divided on its application to the terminally ill. But the problem with end-of-life autonomy is not determining the correct population to which it applies; it is the ableism underlying the concept of "autonomy" itself. I redefine "autonomy" as a relational process of self-development that is oriented toward a greater recognition of dependence. This rethinking can make the ADA more responsive to terminally ill individuals, and helps lay the foundation for a disability studies theory of end-of-life autonomy.</p>

scholarly journals Building Bridges Between the Civil Rights Movements of People with Disabilities and Those with Terminal Illness

2017 ◽  
Vol 78 (3) ◽  
Author(s):  
Kathryn L. Tucker
Keyword(s):  
United States ◽  
Civil Rights ◽  
End Of Life ◽  
Terminal Illness ◽  
Terminally Ill ◽  
People With Disabilities ◽  
The United States ◽  
Disability Rights ◽  
Persons With Disabilities ◽  
Aid In Dying

The movement for disability rights in the United States is grounded on a bedrock commitment to empowering the individual with autonomy and independence. Despite this foundation, a sharp line has been drawn by much of the disability advocacy community when it comes to the autonomy of a mentally competent terminally ill patient to choose a more peaceful death through aid in dying. This exercise of autonomy has largely been opposed by the disability advocacy community. This Article proposes that given the common principles shared by these two social justice movements and evidence from two decades of open practice in the United States that shows that no risk arises for people with disabilities when aid in dying is available, it is time for the disability advocacy community to reexamine and evolve its position on aid in dying. This evolution has the potential to benefit both advocacy communities.Part I discusses the principles common to the movements for disability rights and end-of-life liberty, demonstrating how they are virtually identical. Part II reviews arguments advanced by proponents of end-of-life liberty in favor of empowering terminally ill patients with more options, specifically including aid in dying, and those advanced by disability rights advocates against this position. In Part III, the data from nearly twenty years of openly practiced aid in dying in the United States is reviewed. Particular focus is given to how data regarding this practice relates to persons with disabilities. Finally, Part IV suggests that it is timely and strategic for the disability advocacy community to reconsider its opposition to aid in dying, and it sets forth indicators that such reconsideration is emerging. 

Happiness at the end of life: A qualitative study

2021 ◽  
pp. 1-7
Author(s):  
Tan Seng Beng ◽  
Wong Ka Ghee ◽  
Ng Yun Hui ◽  
Ooi Chieh Yin ◽  
Khoo Wei Shen Kelvin ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
End Of Life ◽  
Terminal Illness ◽  
Terminally Ill ◽  
Social Connections ◽  
Targeted Interventions ◽  
Pain And Suffering ◽  
The University ◽  
Eudaimonic Happiness

Abstract Objective Dying is mostly seen as a dreadful event, never a happy experience. Yet, as palliative care physicians, we have seen so many patients who remained happy despite facing death. Hence, we conducted this qualitative study to explore happiness in palliative care patients at the University of Malaya Medical Centre. Method Twenty terminally ill patients were interviewed with semi-structured questions. The results were thematically analyzed. Results Eight themes were generated: the meaning of happiness, connections, mindset, pleasure, health, faith, wealth, and work. Our results showed that happiness is possible at the end of life. Happiness can coexist with pain and suffering. Social connections were the most important element of happiness at the end of life. Wealth and work were given the least emphasis. From the descriptions of our patients, we recognized a tendency for the degree of importance to shift from the hedonic happiness to eudaimonic happiness as patients experienced a terminal illness. Significance of results To increase the happiness of palliative care patients, it is crucial to assess the meaning of happiness for each patient and the degree of importance for each happiness domain to allow targeted interventions.

End of Life Communication

2016 ◽  
Author(s):  
Maureen P. Keeley
Keyword(s):  
End Of Life ◽  
Terminal Illness ◽  
Death And Dying ◽  
Family Members ◽  
Terminally Ill ◽  
Comfort Care ◽  
Hospice Volunteers ◽  
End Of Life Decision ◽  
And Control ◽  
End Of Life Communication

End of life communication includes both verbal and nonverbal messages that transpire following a diagnosis of a terminal illness and death. The circumstances that occur at the end of life create opportunities for unique and important communication. Specifically, communication at the end of life is impacted by numerous and complicated factors: First, cultural views on death and dying often determine what is talked about, when it can be talked about, and who is included in the conversations. Second, the fears, desires, and needs of the terminally ill must be taken into account at the end of life as it is their personal end of life journey. Third, the nature of the relationships between the terminally ill and their family and friends have tremendous influence on the nature and topics of conversations that will be shared. Fourth, interactions with healthcare professionals (preferably with palliative care specialists) tend to be more task focused, emphasizing end of life decision making and comfort care for the terminally ill. Fifth, as people are tending to live longer with terminal illness and often doing so far from their family, professional caregivers and hospice volunteers are also engaging in meaningful and significant communication with the terminally ill. Communication at the end of life often determines whether or not the dying are allowed to die with dignity, with some control over their final wishes, and whether they are ultimately able to obtain some peaceful closure. Within close relationships communication at the end of life has the potential for authentic conversations that bring people closer, heal old wounds, and allow the terminally ill and close others to create some final memories and to say goodbye to one another. Communication at the end of life with health professionals has the potential for both the terminally ill and their family members to have greater satisfaction with end of life decisions and control of pain for the terminally ill, as well as better outcomes regarding grief and bereavement following the death for family members. For hospice volunteers and professional caregivers, communication at the end of life teaches the necessity and complexities of interactions at the end of life for the larger society.

Patient and caregiver characteristics related to completion of advance directives in terminally ill patients

2016 ◽  
Vol 15 (1) ◽  
pp. 12-19 ◽  
Author(s):  
Grace W.K. Ho ◽  
Lauren Skaggs ◽  
Gayane Yenokyan ◽  
Anela Kellogg ◽  
Julie A. Johnson ◽  
...  
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
Terminal Illness ◽  
Terminally Ill ◽  
Living Will ◽  
Care Planning ◽  
Power Of Attorney ◽  
Convenience Sample ◽  
Advance Care ◽  
Lateral Sclerosis

AbstractObjective:There is a growing body of literature describing the characteristics of patients who plan for the end of life, but little research has examined how caregivers influence patients' advance care planning (ACP). The purpose of this study was to examine how patient and caregiver characteristics are associated with advance directive (AD) completion among patients diagnosed with a terminal illness. We defined AD completion as having completed a living will and/or identified a healthcare power of attorney.Method:A convenience sample of 206 caregiver–patient dyads was included in the study. All patients were diagnosed with an advanced life-limiting illness. Trained research nurses administered surveys to collect information on patient and caregiver demographics (i.e., age, sex, race, education, marital status, and individual annual income) and patients' diagnoses and completion of AD. Multivariate logistic regression was employed to model predictors for patients' AD completion.Results:Over half of our patient sample (59%) completed an AD. Patients who were older, diagnosed with amyotrophic lateral sclerosis, and with a caregiver who was Caucasian or declined to report an income level were more likely to have an AD in place.Significance of results:Our results suggest that both patient and caregiver characteristics may influence patients' decisions to complete an AD at the end of life. When possible, caregivers should be included in advance care planning for patients who are terminally ill.

scholarly journals End-of-Life Discussions, Goal Attainment, and Distress at the End of Life: Predictors and Outcomes of Receipt of Care Consistent With Preferences

2010 ◽  
Vol 28 (7) ◽  
pp. 1203-1208 ◽  
Author(s):  
Jennifer W. Mack ◽  
Jane C. Weeks ◽  
Alexi A. Wright ◽  
Susan D. Block ◽  
Holly G. Prigerson
Keyword(s):  
End Of Life ◽  
Odds Ratio ◽  
Terminal Illness ◽  
Goal Attainment ◽  
Terminally Ill ◽  
Full Sample ◽  
Patients With Cancer ◽  
Physical Distress ◽  
Eol Care ◽  
To Receive

Purpose Physicians have an ethical obligation to honor patients' values for care, including at the end of life (EOL). We sought to evaluate factors that help patients to receive care consistent with their preferences. Methods This was a longitudinal multi-institutional cohort study. We measured baseline preferences for life-extending versus symptom-directed care and actual EOL care received in 325 patients with advanced cancer. We also measured associated sociodemographic, health, and communication characteristics, including EOL discussions between patients and physicians. Results Preferences were assessed a median of 125 days before death. Overall, 68% of patients (220 of 325 patients) received EOL care consistent with baseline preferences. The proportion was slightly higher among patients who recognized they were terminally ill (74%, 90 of 121 patients; P = .05). Patients who recognized their terminal illness were more likely to prefer symptom-directed care (83%, 100 of 121 patients; v 66%, 127 of 191 patients; P = .003). However, some patients who were aware they were terminally ill wished to receive life-extending care (17%, 21 of 121 patients). Patients who reported having discussed their wishes for EOL care with a physician (39%, 125 of 322 patients) were more likely to receive care that was consistent with their preferences, both in the full sample (odds ratio [OR] = 2.26; P < .0001) and among patients who were aware they were terminally ill (OR = 3.94; P = .0005). Among patients who received no life-extending measures, physical distress was lower (mean score, 3.1 v 4.1; P = .03) among patients for whom such care was consistent with preferences. Conclusion Patients with cancer are more likely to receive EOL care that is consistent with their preferences when they have had the opportunity to discuss their wishes for EOL care with a physician.

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.

Views of Registered Dietitians Compared to Speech-Language Pathologists on Artificial Nutrition and Hydration at the End of Life

2021 ◽  
pp. 104990912199431
Author(s):  
Molly K Bigford ◽  
Roschelle Heuberger ◽  
Erica Raymond ◽  
Viki Shayna ◽  
James Paauw
Keyword(s):  
End Of Life ◽  
Terminal Illness ◽  
Descriptive Analysis ◽  
Study Patient ◽  
Artificial Nutrition ◽  
Speech Language Pathologists ◽  
Artificial Nutrition And Hydration ◽  
Nutrition And Hydration ◽  
Evidenced Based ◽  
Registered Dietitian Nutritionists

Objective: To analyze and compare the knowledge and opinions of registered dietitian nutritionists (RDNs) about artificial nutrition and hydration (ANH) in a terminal illness. Beliefs of speech-language pathologists (SLPs) were also considered and compared against RDN data. Methods: This is a descriptive analysis utilizing survey responses from RDNs and SLPs regarding ANH in a case study patient with advanced dementia. Results: There was a strong belief among RDNs that ANH at end of life (EOL) would improve nutritional status, although a correlation was found between those in favor of ANH and believing it was ethical to withhold ANH at EOL (R2 = 0.109, p = 0.002). Responses indicated that SLPs need more education regarding ANH techniques, while RDNs felt ANH would improve aspiration risk. Place of employment, religion and age of respondents were also found to impact beliefs. Conclusion: Clinicians, specifically RDNs, working with patients at EOL need more evidenced-based education on the risks and benefits of ANH. Decisions regarding care of patients at EOL should be void of clinicians’ personal bias which may affect ethical treatment in the clinical setting. Further controlled trials must be performed before claims can be made regarding ANH at EOL.

scholarly journals Facing Death: Attitudes toward Physician-Assisted End of Life among Physicians Working at a Tertiary-Care-Hospital in Israel

2021 ◽  
Vol 18 (12) ◽  
pp. 6396
Author(s):  
Keren Dopelt ◽  
Dganit Cohen ◽  
Einat Amar-Krispel ◽  
Nadav Davidovitch ◽  
Paul Barach
Keyword(s):  
End Of Life ◽  
Tertiary Care Hospital ◽  
Human Life ◽  
Tertiary Care ◽  
Terminally Ill ◽  
Background Information ◽  
Care Hospital ◽  
Medical Assistance In Dying ◽  
Terminally Ill Patients ◽  
The Right

The demand for medical assistance in dying remains high and controversial with a large knowledge gap to support optimal patient care. The study aimed to explore physicians’ attitudes regarding euthanasia and examine the factors that related to these attitudes. We surveyed 135 physicians working at a tertiary-care hospital in Israel. The questionnaire was comprised of demographic and background information, DNR procedure information, encounters with terminally ill patients, familiarity with the law regarding end-of-life questions, and Attitudes toward Euthanasia. About 61% agreed that a person has the right to decide whether to expedite their own death, 54% agreed that euthanasia should be allowed, while 29% thought that physicians should preserve a patients’ life even when they expressed the wish to die. A negative statistically significant relationship was found between the level of religiosity and attitudes toward euthanasia. The physicians’ attitudes towards euthanasia are quite positive when compared to other countries. The data shows a conflict of values: the sacredness of human life versus the desire to alleviate patients’ suffering. The Coronavirus-19 outbreak reinforces the importance of supporting physicians’ efforts to provide ethical and empathic communication for terminally ill patients. Future studies should aim to improve our understanding and treatment of the specific types of suffering that lead to end-of-life requests.

scholarly journals Locked Out

2017 ◽  
Vol 26 (4) ◽  
pp. 555-576 ◽  
Author(s):  
VERONICA JOHANSSON ◽  
SURJO R. SOEKADAR ◽  
JENS CLAUSEN
Keyword(s):  
Quality Of Life ◽  
Moral Responsibility ◽  
Medical Condition ◽  
Persons With Disabilities ◽  
Social Barriers ◽  
Computer Interfaces ◽  
Novel Approach ◽  
Viable Solution ◽  
Key Issues

Abstract:Brain–computer interfaces (BCIs) can enable communication for persons in severe paralysis including locked-in syndrome (LIS); that is, being unable to move or speak while aware. In cases of complete loss of muscle control, termed “complete locked-in syndrome,” a BCI may be the only viable solution to restore communication. However, a widespread ignorance regarding quality of life in LIS, current BCIs, and their potential as an assistive technology for persons in LIS, needlessly causes a harmful situation for this cohort. In addition to their medical condition, these persons also face social barriers often perceived as more impairing than their physical condition. Through social exclusion, stigmatization, and frequently being underestimated in their abilities, these persons are being locked out in addition to being locked-in. In this article, we (1) show how persons in LIS are being locked out, including how key issues addressed in the existing literature on ethics, LIS, and BCIs for communication, such as autonomy, quality of life, and advance directives, may reinforce these confinements; (2) show how these practices violate the United Nations Convention on the Rights of Persons with Disabilities, and suggest that we have a moral responsibility to prevent and stop this exclusion; and (3) discuss the role of BCIs for communication as one means to this end and suggest that a novel approach to BCI research is necessary to acknowledge the moral responsibility toward the end users and avoid violating the human rights of persons in LIS.

Association between perceptions of prognosis and end-of-life outcomes for patients with advanced lung and gastrointestinal cancer.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 6503-6503
Author(s):  
Carlisle E. W. Topping ◽  
Madeleine Elyze ◽  
Rachel Plotke ◽  
Lauren Heuer ◽  
Charu Vyas ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Gastrointestinal Cancer ◽  
Controlled Trial ◽  
Terminally Ill ◽  
Cancer Type ◽  
Linear Regression Models ◽  
Care Intervention ◽  
Eol Care ◽  
At Home

6503 Background: Many patients with advanced cancer maintain misperceptions of their prognosis and are thus unprepared to make difficult decisions regarding their end-of-life (EOL) care. However, studies examining the associations between patients’ perceptions of their prognosis and their EOL outcomes are limited. Methods: We conducted a secondary analysis using longitudinal data from a randomized controlled trial of a palliative care intervention for patients with newly diagnosed incurable lung and non-colorectal gastrointestinal cancer. We administered the Prognosis and Treatment Perceptions Questionnaire to assess patients’ perceptions of their prognosis at baseline, week-12, and week-24, using the final assessment closest to death. We used multivariate logistic and linear regression models, adjusting for age, gender, marital status, cancer type, and randomization to the palliative care intervention, to examine the associations among patients’ perceptions of their prognosis with the following EOL care outcomes abstracted from the electronic health record: 1) hospice utilization and length-of-stay (LOS); 2) hospitalizations in the last 30 days of life; 3) receipt of chemotherapy in the last 30 days of life; and 4) location of death. Results: We enrolled 350 patients in the parent trial, of which 80.5% (281/350) died during the study period and were included in this analysis. Overall, 59.4% (164/276) of patients reported that they were terminally ill, and 66.1% (154/233) reported that their cancer was likely curable at the assessment closest to death. In multivariate analyses, patients who reported that their cancer was likely curable were less likely to utilize hospice (OR = 0.25, 95%CI 0.10-0.61, P = 0.002) or die at home (OR = 0.56, 95%CI 0.32-0.98, P = 0.043), and more likely to be hospitalized in the last 30 days of life (OR = 2.28, 95%CI 1.20-4.32, P = 0.011). In contrast, patients’ report that they were terminally ill was only associated with lower likelihood of hospitalizations in the last 30 days of life (OR = 0.52, 95%CI 0.29-0.92, P = 0.025). Patients’ perceptions of their prognosis were not associated with hospice LOS or chemotherapy administration in the last 30 days of life. Conclusions: Patients’ perceptions of their prognosis are associated with important EOL outcomes including hospice utilization, hospitalizations at the EOL, and death at home. Interventions are needed to enhance patients’ perceptions of their prognosis in order to optimize their EOL care.

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