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3.
Perspect Biol Med ; 65(2): 307-315, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35938438

RESUMO

This article discusses the utility of Perske's "dignity of risk" as a useful heuristic to explain the consent process for a study to evaluate central thalamic deep brain stimulation as a means to restore cognitive function in moderate to severe brain injury. Narratives of interviews with subjects and their families from a related BRAIN Initiative study reveal discordant views on risk, with subjects being more risk-tolerant than their loved ones. This is a challenge for families who remain protective of subjects who have recovered to the point that they are capable of independent decision-making. While the legal threshold for consent has been met, normative and psychological challenges remain as families accommodate themselves to the reemergent agency of the subject. Dignity of risk is a constructive framework to apprehend how families come to appreciate the primacy of the subject's voice and affirm their reemergent agency following a devastating brain injury.


Assuntos
Lesões Encefálicas , Estimulação Encefálica Profunda , Voz , Lesões Encefálicas/terapia , Estimulação Encefálica Profunda/métodos , Humanos , Respeito , Tálamo/fisiologia
5.
Perspect Biol Med ; 65(2): 171-178, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35938424

RESUMO

This article uses multiple interwoven personal narratives to explicate the relationships among several concepts crucial to bioethics brought into focus by Robert Perske's 1972 article on "The Dignity of Risk," including dignity, risk, paradox, disability, autonomy, uncertainty, diagnosis, and prognosis. The use of personal narrative as a form of evidence and a knowledge-making method allows for the exploration of the meaning-making work of language and story and the introduction of humanities and social science concepts such as stigma management and dignity maintenance into Perske's concept of the dignity of risk. The personal narratives the article draws include Mark, a character in Perske's article; W. E. B. Du Bois; Frantz Fanon; and myself. Finally, the article calls for humility in medical science's predictive narratives for all patients, but particularly for people with disabilities.


Assuntos
Bioética , Pessoalidade , Humanos , Respeito
6.
Perspect Biol Med ; 65(2): 179-188, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35938425

RESUMO

Requesting accommodations such as signed language interpreters in health-care settings is an activity that can present risk to the deaf patient. By providing space for considerations of risk-taking for particular kinds of experiences that are not universally shared, such as interpreter-mediated experiences, the notion of the dignity of risk can be expanded. The author uses two examples of signed language interpreting in health-care settings to demonstrate how the dignity of risk emerges. This is followed by an analysis of the concept of epistemic injustice as applied to insider knowledge of the deaf community and the potential harms to one's dignity resulting from this asymmetry of knowledge. The essay concludes with an evaluation of concerns about dignity and risk for deaf individuals.


Assuntos
Respeito , Línguas de Sinais , Humanos
7.
Perspect Biol Med ; 65(2): 189-198, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35938426

RESUMO

The dignity of risk implies respect for individuals' right to make their own decisions, to participate in a broad range of desired activities, even if those activities have risk, and to expose themselves to potential consequences or learning opportunities. Historically, a more paternalistic approach, done as a benevolent assurance of safety, has been taken with individuals with intellectual disabilities. While optimizing safety, this approach can limit opportunity and, more importantly, limit the dignity of the individual. However, the concern for safety and the sense of responsibility to keep individuals with intellectual disabilities from harm is solidly entrenched and is not without some merit. "Supported decision-making" can offer an alternative to guardianship for some individuals, providing structured processes to enhance full participation. Strategies to involve individuals with intellectual disabilities in their own decision-making and to optimize the safety of those decisions include expanding the discussion of the concept of dignity of risk with family members and care providers of individuals with intellectual disabilities before they turn 18 years old; providing social-skills training and other educational opportunities that promote the likelihood of success in activities and decision-making; and maintaining guardrails when needed to prevent serious harms.


Assuntos
Deficiência Intelectual , Adolescente , Família , Humanos , Aprendizagem , Respeito
8.
Perspect Biol Med ; 65(2): 199-206, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35938427

RESUMO

Dignity of risk, as originally defined by Robert Perske (1972), focused on the treatment of people with intellectual impairments and the need to shift away from paternalism. However, the term also resonates deeply in other health-care situations today. The concept of dignity of risk is tricky to operationalize in many contexts, including in medical decision-making during rehabilitation. In some cases, clinicians may focus solely on risk and how best to "minimize" risk to patients, rather than on understanding and fleshing out options and choices. Questions naturally surface, such as: whose risk are we seeking to limit and at what cost to a patient's dignity? How do personal choices relate to patients' values and quality of life? Can we employ a shared decision-making model when discussing risk taking? When we look closely, we recognize that dignity of risk is at play when cognitively intact patients disregard medical advice that is viewed as the standard of care. This article closely examines this type of risk, the context in which it arises in rehabilitation, and opportunities for shared decision-making that can integrate dignity of risk principles.


Assuntos
Medicina , Respeito , Humanos , Paternalismo , Qualidade de Vida
9.
Perspect Biol Med ; 65(2): 213-220, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35938429

RESUMO

Dignity and indignity, risk and safety, are pairs of concepts on a continuum, and this continuum can have fuzzy boundaries and differing interpretations. Risk is typically defined and apprehended by an actor and an observer and can shift according to time, place, context, and voice. Moreover, when the dignity of risk is considered, it typically involves the subject who is deemed to be taking the risk(s) and the other who is considering protection or safeguards and weighing in at a specific moment in time, focusing on a window of information and conceptualization. This can lead to reflexive responses and confirmatory biases. This article draws on the author's experience as a psychologist and clinical ethicist and focuses on judgments about the other, the meaning of risk, and the confounding nature of human perceptions and attributions about risk. As humans in relationship with each other, we are imperfect evaluators of risk for the other. Humility and an openness to situational factors may open up much needed space for reflection.


Assuntos
Respeito , Humanos
10.
Perspect Biol Med ; 65(2): 232-241, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35938431

RESUMO

Hospitals have both a regulatory and an ethical mandate to craft a safe discharge plan for all patients. These plans can become a source of conflict between clinicians and patients when they have differing conceptions of safety and best interests. In bioethics principles this conflict can be characterized as the tension between the patient's right to make medical decisions in accordance with their values, or autonomy, and the clinician's obligation to provide best care to their patients, or beneficence. Employed independently, these principles can be limiting and may not accommodate the nuanced narrative of patients who lack decisional capacity but have expressed clear preferences about where they wish to live. Utilizing case-based discussion, this article explores how the inclusion of Robert Perske's dignity of risk principal in bioethics consultation can support clinicians in expanding their conceptions of beneficence and safety, providing the team with the freedom to craft discharge plans that keep the patient at the center of the narrative.


Assuntos
Bioética , Autonomia Pessoal , Beneficência , Humanos , Encaminhamento e Consulta , Respeito
11.
Perspect Biol Med ; 65(2): 242-251, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35938432

RESUMO

Managing risk is a necessary component of living a full moral life. Evaluating which risks are acceptable, for what reasons, in what conditions, and then taking actions based on those evaluations, are exercises of moral agency-of intentionally actualizing values that shape an embodied personhood. Health-care institutions in the United States are risk averse, designed to manage risk in ways that can impede the full exercise of patients' moral agency. Home hospice care, conceived as an alternative to institutionally based end-of-life care and driven explicitly by patient goals and values, would seem to be an environment in which patients are empowered to express the full spectrum of their personhood-including making decisions about risk consistent with their values. While home hospice patients have more discretion over risk than patients receiving care in institutions like hospitals and nursing homes, efforts to limit that discretion abound. Such limits can be experienced by patients as failures to recognize their dignity as persons, even while those limits are perceived by others as necessary to preserve that very dignity by keeping them safe. This article uses a running case study to reconceptualize "risk" in home hospice care by (1) challenging the clinical assumption that physical harm is the most important lens through which to view risk, and (2) presenting and applying the concept of positive risk-taking as one way to develop the concept and assessment of risk more fully.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Humanos , Casas de Saúde , Pessoalidade , Respeito , Estados Unidos
12.
Perspect Biol Med ; 65(2): 252-261, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35938433

RESUMO

For Americans with significant disability, decisions about where to live are common flashpoints for the dignity of risk principle. Typically, a health-care professional, like the person's primary care physician, argues that the person is unsafe living at home and therefore must enter a nursing home. However, most people-even with extensive activities of daily living support needs-want to remain home in their communities. The belief that nursing homes offer safer residential environments is unproven and highly suspect. Furthermore, removing people from their personal home comforts diminishes their quality of life. Nonetheless, despite the clear moral imperative of the dignity of risk principle, many factors in the United States impede people with significant disability from remaining at home. Ableist and stigmatized attitudes of physicians about quality of life among people with disability are potential contributors. Few people have adequate financial resources to afford the personal assistance services (PAS) they need for daily basic supports. Medicaid, the major public payor for PAS, is difficult to join, varies widely by state, and has long waiting lists for home and community-based services. These issues are explored using stories from the author's friend Michael, who has significant physical disability and lives home alone.


Assuntos
Atividades Cotidianas , Pessoas com Deficiência , Humanos , Casas de Saúde , Qualidade de Vida , Respeito , Estados Unidos
13.
Perspect Biol Med ; 65(2): 262-273, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35938434

RESUMO

Historically, people with intellectual/developmental disabilities (IDD) lived in institutions with little contact with the community. Having a label of "mental retardation" meant they were incapable of living and working outside of the institution. These individuals were protected from risk and harms and had little input into how they lived their lives. Perske (1972) challenged the idea that persons with IDD necessarily had to be protected from the harms one faces in daily life. He championed the principle of "dignity of risk," respecting their right to weigh risks and harms of their choices. Over time, federal, state, and local agencies embraced the idea that people with IDD should be integrated into communities and receive supports so they may live their lives to the fullest. This article discusses how a community agency worked with their clients with IDD to balance their personal liberties with acceptable risks as they live and work in the community. Approaches such as the use of a Risk Committee or the empowerment of direct care workers in assessing risks are described through case illustrations.


Assuntos
Deficiências do Desenvolvimento , Deficiência Intelectual , Criança , Pessoal de Saúde , Humanos , Masculino , Respeito
14.
Perspect Biol Med ; 65(2): 274-282, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35938435

RESUMO

Of the more than 47 million people living with Alzheimer's disease or other types of dementia, an estimated one-third live alone. This essay explores the idea of the dignity of risk as it presents in the lives of people living alone with dementia, an underrepresented group in research, and considers the tension between safeguarding people with dementia from risks associated with disease progression and denying them the experience of risk as an aspect of everyday life. For individuals, risk is associated with vulnerability, choice, uncertainty, and the pursuit of goals, and may hold positive and negative connotations. This essay considers how myriad choices in the everyday lives of people living alone with dementia present some degree of risk, and how the ability to make these choices may constitute a life of dignity, replete with meaning and richness. The essay concludes with suggestions about how to reframe living alone with dementia as a way of living that can be better socially supported.


Assuntos
Demência , Ambiente Domiciliar , Humanos , Respeito , Incerteza
15.
Perspect Biol Med ; 65(2): 295-306, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35938437

RESUMO

Although the notion of "dignity of risk" has primarily been used in reference to adolescents with disabilities, this concept can be applied to all adolescents, as parents and guardians are challenged by how to balance adolescents' need for self-determination with the need for safety and supervision. In the context of maturing cognitive and emotional neural circuits, normative adolescent development involves temporal shifts in social and environmental factors that are inherently associated with both higher risk-taking and opportunities for growth and new learning. The challenge for parents of balancing risk and opportunity is influenced by social, cultural, and environmental factors, previous experience, personality, and the perceived capability of the adolescent. When perceived capability is lower, the challenge becomes even more acute, such as when an adolescent has a developmental, physical, or psychiatric disability that impacts cognitive, emotional, or adaptive functioning. This article reviews the literature on normative brain development from the perspective of balancing risk and self-determination in adolescence and discusses the implications for families and clinicians across a range of ability and disability. Potential approaches to fostering self-determination are discussed.


Assuntos
Emoções , Respeito , Adolescente , Humanos
17.
BMJ ; 378: o1698, 2022 07 13.
Artigo em Inglês | MEDLINE | ID: mdl-35831014

Assuntos
Nomes , Respeito , Humanos
19.
Int J Palliat Nurs ; 28(7): 314-321, 2022 Jul 02.
Artigo em Inglês | MEDLINE | ID: mdl-35861440

RESUMO

BACKGROUND: The concept of end of life (EOL), as in the term end-of-life care, is used synonymously in both palliative and terminal care. Practitioners and researchers both require a clearer specification of the end-of-life concept to be able to provide appropriate care in this phase of life and to conduct robust research on a well-described theoretical basis. AIMS: The aim of this study was to critically analyse the end-of-life concept and its associated terminology. METHOD: A concept analysis was performed by applying Rodgers' evolutionary concept analysis method. FINDINGS: Time remaining, clinical status/physical symptoms, psychosocial symptoms and dignity were identified as the main attributes of the concept. Transition into the end-of-life phase and its recognition were identified as antecedents. This study demonstrates that end-of-life care emerged following the application of the 'end-of-life concept' to clinical practice. CONCLUSION: The early recognition of the end-of-life phase seems to be crucial to ensuring an individual has well-managed symptoms and a dignified death.


Assuntos
Assistência Terminal , Morte , Humanos , Cuidados Paliativos , Respeito
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