Search citation statements
Paper Sections
Citation Types
Year Published
Publication Types
Relationship
Authors
Journals
During the period 1980-2000 the research literature has been dominated by surveys and studies soliciting views on predefined issues with relatively few in-depth, open-ended qualitative studies.
During the period 1980-2000 the research literature has been dominated by surveys and studies soliciting views on predefined issues with relatively few in-depth, open-ended qualitative studies.
Most ethical guidelines strongly promote disclosure of a diagnosis of dementia to the affected individual, based on the principle of autonomy. Nevertheless, codes of medical ethics allow for various interpretations of this issue and surveys of clinical practice illustrate that such disclosure is by no means the rule. We argue that diagnostic disclosure for persons with dementia must be considered a process that begins when cognitive impairment is first suspected and that evolves over time as information is obtained. Whenever possible and appropriate, this process should involve not only the affected individual but also their family and/or other current or potential future care providers. Once a diagnosis is established it should be disclosed in a manner consistent with the expressed wishes of the patient, using an individualized patient-centered approach that maintains the individual's personal integrity. Diagnostic disclosure of dementia is a process that may require additional time as well as follow-up or referral to other specialists. We recommend that a progressive disclosure process be employed to address issues including: remaining diagnostic uncertainty, treatment options, future plans, financial planning, assigning power of attorney, wills and "living wills", driving privileges and the need for eventual driving cessation, available support services, and potential research participation. The potential for adverse psychological consequences to diagnostic disclosure must be assessed and these should be addressed through education and support of the patient and their family/caregivers throughout the diagnostic disclosure process. At present, few data are available regarding patients' perspectives on the diagnostic disclosure process and its consequences. This limitation and the apparent discrepancies in physician and caregiver opinions about the disclosure process, make it incumbent upon health care professionals to evaluate the diagnostic disclosure process within their practice.
Les développements en technologie informatique et la restructuration constante des services de santé en vue d'accroître les services en communauté plaident en faveur d'une amélioration des communications et l'échange d'information personnelle des patients entre les divers fournisseurs de soins sociaux et de la santé. Cependant, les principes de confidentialité et de protection de la vie privée sembleraient empêcher ces processus. Afin d'explorer les obligations pratiques, éthiques et légales qui relèvent des échanges d'information personnelle de santé, nous avons mené une série d'entrevues avec des intervenants en milieu de la santé, des personnes au stage initial de la démence ainsi qu'avec des aidants naturels. Les résultats indiquent qu'un certain niveau de discorde règne parmi les principaux concernés. Les professionnels de la santé indiquent qu'ils approuvent le dévoilement d'information à leurs collègues et aux aidants naturels dans l'intérêt des patients. Les patients reconnaissent les avantages de la divulgation d'information personnelle aux intervenants professionnels, mais ils préféreraient retenir le contrôle du dévoilement aux membres de la famille. Quant aux membres de la famille, ils souhaitent être informés de la condition du patient, et ce, même sans son accord. Le présent travail discute aussi les implications de ces résultats pour la recherche et la formation de nouvelles politiques. A B S T R A C TDevelopments in information technology and the ongoing restructuring of health services to increase provision in community settings militate in favour of a streamlining of communications and the exchange of information about patients among health and social care providers. Yet the principles of confidentiality and privacy appear to inhibit this process. In order to explore the practical, ethical, and legal imperatives attendant upon personal health information exchange, we conducted a series of interviews with professional care providers, persons with early-stage dementia, and their family caregivers. The findings indicate some degree of discordance. Professionals reported valuing disclosure both to colleagues and family caregivers on the basis of its being in the patients' best interests. Patients also valued inter-professional exchange, but sought strong control over disclosure to family members. Family caregivers valued being kept informed of the patient's condition, even without the latter's consent. Implications for research and policy are discussed.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
hi@scite.ai
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.