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JAMA Oct 2021
Topics: Adult; Advance Care Planning; Advance Directive Adherence; Decision Making; Decision Making, Shared; Health Services Needs and Demand; Humans; Patient Preference; Proxy; Quality Improvement; Quality of Life; Terminal Care
PubMed: 34623373
DOI: 10.1001/jama.2021.16430 -
Dementia and Geriatric Cognitive... 2021In the absence of a cure, dementia is often managed by minimizing risk factors contributing to quality of life (QOL). Attitudes to dementia in older adults may differ...
INTRODUCTION
In the absence of a cure, dementia is often managed by minimizing risk factors contributing to quality of life (QOL). Attitudes to dementia in older adults may differ from those in relatively younger adults. The aim was to conduct a systematic review of the literature to determine how QOL was assessed in adults, 65 years and older with dementia, and identify factors that influence the reported scores.
METHODS
A systematic review of full-text articles addressing QOL in older adults with dementia, published in English from January 1995 to September 2020, was conducted using PubMed and PsycINFO. We included studies that assessed QOL and involved participants 65 years and older. Studies were evaluated for inclusion by 2 independent pairs of reviewers. We assessed the quality of the studies using the Joanna Briggs Institute's Critical Appraisal Checklist. Study characteristics and findings were summarized. Analysis was by narrative synthesis. We identified social and clinical factors influencing QOL scores.
RESULTS
Of the 1,010 articles identified, 19 met the inclusion criteria. These 19 studies involved 6,279 persons with dementia, with sample sizes from 32 to 1,366. Mean age of participants ranged from 77.1 to 86.6 years. Five measurement tools were identified; Quality of Life in Alzheimer Disease (QOL-AD), Alzheimer Disease-Related Quality of Life (ADRQL), Quality of Life in Late-Stage Dementia (QUALID), QUALIDEM (a dementia-specific QOL tool), and DEMQOL (health-related QOL for people with dementia). Self-ratings of QOL were higher than proxy ratings. Factors commonly influencing self-ratings of QOL included depression, functional impairment, and polypharmacy. Common factors that influenced proxy ratings included functional impairment, presence of neuropsychiatric symptoms, cognitive impairment, and caregiver burden.
CONCLUSION
In evaluating QOL in dementia, self- and proxy reports may complement each other to ensure that all perspectives are addressed.
Topics: Aged; Aged, 80 and over; Alzheimer Disease; Caregivers; Dementia; Humans; Proxy; Quality of Life
PubMed: 34167127
DOI: 10.1159/000515317 -
Anaesthesiology Intensive Therapy 2014The right to self-determination, including the decision on treatment, is affirmed in modern societies. Therefore, the fundamental condition of legal procedures is... (Review)
Review
The right to self-determination, including the decision on treatment, is affirmed in modern societies. Therefore, the fundamental condition of legal procedures is informed consent of a patient or an authorised person. However, to make the consent legally effective, some conditions have to be met; of these, the provision of comprehensive medical information is of the utmost importance. Thus, a patient is entitled to necessary information provided by a physician. The correlate of this right is the obligation to disclose information which must be fulfilled by a medical practitioner. The aim of this review is to examine this obligation in terms of determining the range of subjects authorised to provide information, the scope of subject information or a set of data, and the manner and time in which it should be given. Moreover, this article discusses regulations which permit limitations of information disclosure, i.e. the patient's entitlement to renounce the right to information, and therapeutic privilege. The disquisition regards achievements of legal doctrine and judicature, from the angle of which all the legal solutions and doubts arising are presented.
Topics: Disclosure; Humans; Informed Consent; Legal Guardians; Patient Rights; Third-Party Consent
PubMed: 25078772
DOI: 10.5603/AIT.2014.0033 -
Polskie Archiwum Medycyny Wewnetrznej Sep 2009On March 31, 2005, Terri Schiavo (born December 3, 1963) died -- the final complication of a cardiac arrest on February 25, 1990. Her death was preceded by the... (Review)
Review
On March 31, 2005, Terri Schiavo (born December 3, 1963) died -- the final complication of a cardiac arrest on February 25, 1990. Her death was preceded by the withdrawal of artificially administered hydration and nutrition through a feeding tube. Prior to her death, Terri's saga was the focus of intense medical, ethical, and legal debates in the United States (US) and elsewhere. These debates were characterized by confusion about the facts, ethical principles, and laws relevant to the case. Much of the confusion revolved around a number of ethical and legal questions including: Is it ethically and legally permissible to withhold or withdraw life-sustaining treatments from patients who do not want the treatments? Is withholding or withdrawing life-sustaining treatments the same as physician-assisted suicide or euthanasia? Is artificially administered hydration and nutrition a medical treatment or mandatory care akin to bathing? What were Terri's values, preferences, and goals regarding life-sustaining treatments? In this article, the medical, ethical, and legal data related to the case and the aforementioned ethical and legal questions raised by it are reviewed. Finally, the clinical implications of the saga, such as the need for clinicians to be more proactive in educating patients about their rights related to making health care decisions, end-of-life care options, and advance care planning (e.g., completing an advance directive) are discussed. Notably, given that the Schiavo saga occurred in the US, this article is written from a US perspective.
Topics: Adult; Advance Directives; Euthanasia, Passive; Female; Humans; Legal Guardians; Life Support Care; Persistent Vegetative State; United States
PubMed: 19776703
DOI: No ID Found -
PloS One 2021Vulnerable groups, e.g. persons with mental illness, neurological deficits or dementia, are often excluded as participants from research projects because obtaining...
Attitudes of legal guardians and legally supervised persons with and without previous research experience towards participation in research projects: A quantitative cross-sectional study.
BACKGROUND
Vulnerable groups, e.g. persons with mental illness, neurological deficits or dementia, are often excluded as participants from research projects because obtaining informed consent can be difficult and tedious. This may have the consequence that vulnerable groups benefit less from medical progress. Vulnerable persons are often supported by a legal guardian in one or more demands of their daily life. We examined the attitudes of legal guardians and legally supervised persons towards medical research and the conditions and motivations to participate in studies.
METHODS
We conducted a cross-sectional study with standardized surveys of legal guardians and legally supervised persons. Two separate questionnaires were developed for the legal guardians and the supervised persons to asses previous experiences with research projects and the reasons for participation or non-participation. The legal guardians were recruited through various guardianship organizations. The supervised persons were recruited through their legal guardian and from a previous study among psychiatric patients. The data were analysed descriptively.
RESULTS
Alltogether, 82 legal guardians and 20 legally supervised persons could be recruited. Thereof 13 legal guardians (15.6%) and 13 legally supervised persons (65.0%) had previous experience with research projects. The majority of the guardians with experience in research projects had consented the participation of their supervised persons (n = 12 guardians, 60.0%; in total n = 16 approvals). The possible burden on the participating person was given as the most frequent reason not to participate both by the guardians (n = 44, 54.4%) and by the supervised persons (n = 3, 30.0%). The most frequent motivation to provide consent to participate in a research study was the desire to help other patients by gaining new scientific knowledge (guardians: n = 125, 78.1%; supervised persons: n = 10, 66.6%).
CONCLUSIONS
Overall, an open attitude towards medical research can be observed both among legal guardians and supervised persons. Perceived risks and no sense recognized in the study are reasons for not participating in medical research projects.
Topics: Adult; Attitude; Biomedical Research; Cross-Sectional Studies; Dementia; Female; Humans; Informed Consent; Legal Guardians; Male; Mental Disorders; Middle Aged; Risk; Surveys and Questionnaires; Vulnerable Populations
PubMed: 34525101
DOI: 10.1371/journal.pone.0256689 -
Neurologic Clinics May 1999Current law in the United States authorizes physicians to diagnose brain death by applying generally accepted neurologic criteria for determining loss of function of the... (Review)
Review
Current law in the United States authorizes physicians to diagnose brain death by applying generally accepted neurologic criteria for determining loss of function of the entire brain. This article offers a medical-legal perspective on problems that may arise with respect to the determination of brain death. These include the possibility of diagnostic error, conceptual disagreements that may constrain the use of neurologic criteria to diagnose death, and the conflation of brain death and loss of consciousness. This article also addresses legal aspects of the debate over whether to expand the definition of brain death to include permanent unconsciousness. Although existing laws draw a clear distinction between brain death and the persistent vegetative state, many courts have authorized removal of life support from individuals whose unconsciousness is believed to be permanent on proof that removal accords with preferences expressed before sentience was lost.
Topics: Adult; Advance Directives; Brain Death; Diagnostic Errors; Expert Testimony; Female; Humans; Legal Guardians; Life Support Care; Male; Neurologic Examination; United States
PubMed: 10196410
DOI: 10.1016/s0733-8619(05)70132-8 -
Arquivos de Neuro-psiquiatria Jun 2017To assess the legal capacity and guardianship proceedings in patients diagnosed with dementia.
OBJECTIVE
To assess the legal capacity and guardianship proceedings in patients diagnosed with dementia.
METHODS
Ninety-seven patients diagnosed with dementia and seen at a tertiary hospital were evaluated.
RESULTS
Of these 97 patients, 60 (62%) were female. The mean age of the patients was 77.9 years; average schooling was 5.5 years. The main diagnosis was Alzheimer's disease (73%): 16 patients were at a mild stage, eight at a moderate stage and 73 at an advanced stage of dementia. Only 28 patients had been legally declared incapable.
CONCLUSION
The large numbers of patients at an advanced stage of dementia, and the relatively few patients legally declared incapable show that legal issues in dementia are problematic.
Topics: Aged; Aged, 80 and over; Dementia; Educational Status; Female; Humans; Legal Guardians; Male; Mental Competency; Middle Aged; Patient Advocacy; Personal Autonomy
PubMed: 28658403
DOI: 10.1590/0004-282X20170061 -
Journal of the American Geriatrics... Nov 2022Guardianship may pose an ethical dilemma for physicians, who must balance protecting vulnerable patients from potential safety concerns with respecting their autonomy....
Guardianship may pose an ethical dilemma for physicians, who must balance protecting vulnerable patients from potential safety concerns with respecting their autonomy. Older adults with dementia are particularly susceptible to loss of independence and the ability to participate in medical decision making. To have the capacity for medical decision making, individuals must understand relevant information, appreciate their circumstances, demonstrate reasoning, and express a consistent choice free from coercion. Although capacity assessments are usually task-specific, geriatricians and other specialists may be asked to comment on capacity more globally. These determinations may be used to support a Petition for the Appointment of a Guardian of a Legally Incapacitated Adult, the legal process of pursuing guardianship in probate court. Assigned guardians may be known to the incapacitated individual (e.g., a family member or friend) or may be professional guardians with no prior relationship to the ward. Guardians are encouraged to use substituted decision-making, taking into account the ward's previously expressed values and preferences. Although a number of viable alternatives to guardianship exist, numerous systemic barriers may prevent these from being fully explored. The ongoing need for guardianship should be periodically revisited and reassessed. Data about guardians and wards is shockingly sparse, as there are no centralized databases. Laws and regulations for guardianships vary significantly between states. Physicians can serve as important allies and advocates for patients with cognitive impairment at risk of incapacity, can help preserve their autonomy for as long as possible, and ensure appropriate protections are in place if the patient does lose their decision-making ability.
Topics: Humans; Aged; Decision Making; Legal Guardians; Clinical Decision-Making
PubMed: 35420158
DOI: 10.1111/jgs.17797 -
Journal of Pain and Symptom Management Jul 2021Guardians are surrogate decision makers appointed by a court when other health care decision-makers are unable, unwilling, or unavailable to make decisions. Prior...
CONTEXT
Guardians are surrogate decision makers appointed by a court when other health care decision-makers are unable, unwilling, or unavailable to make decisions. Prior studies suggest that persons under guardianship may experience delays in transitions of care.
OBJECTIVES
To compare quality of end-of-life care for persons under guardianship to a matched group on objective indicators and to identify narrative themes characterizing potential obstacles to quality end-of-life care.
METHODS
One hundred sixty-seven persons under guardianship who died between 2003 and 2019 within the Veterans Healthcare Administration in Massachusetts and Connecticut matched on a 1:1 basis to persons without guardians. The groups were compared on treatment specialty at death, days of hospice and intensive care unit care, and receipt of palliative care consultation. Additionally, patient narratives for those under guardianship with extended lengths in intensive care unit were subjected to qualitative analysis.
RESULTS
Overall, <1% were under guardianship. Within this sample of persons who died within the Veterans Health Administration, persons under guardianship were as likely as patients in the comparison group to receive palliative care consultation (odds ratio [CI] = 0.93 [.590-1.46], P = .359), but were more likely to have ethics consultation (odds ratio [CI] = 0.25 [0.66-0.92], P = .036) and have longer lengths of ICU admission (β = -.34, t = -2.70, P = .009). Qualitative findings suggest that issues related to family conflict, fluctuating medical course, and limitations in guardian authority may underlie extended lengths of stay.
CONCLUSION
Guardianship appears to be rare, and as a rule, those under guardianship have equal access to hospice and palliative care within Veterans Health Administration. Guardianship may be associated with health-care challenges in a small number of cases, and this may drive perceptions of adverse outcomes.
Topics: Hospice Care; Humans; Intensive Care Units; Legal Guardians; Massachusetts; Palliative Care; Terminal Care
PubMed: 33212143
DOI: 10.1016/j.jpainsymman.2020.11.008 -
Deutsches Arzteblatt International Apr 2011Psychiatric emergencies such as acute psychomotor agitation or suicidality often arise in non-psychiatric settings such as general hospitals, emergency services, or... (Review)
Review
BACKGROUND
Psychiatric emergencies such as acute psychomotor agitation or suicidality often arise in non-psychiatric settings such as general hospitals, emergency services, or doctors' offices and give rise to stress for all persons involved. They may be life-threatening and must therefore be treated at once. In this article, we discuss the main presenting features, differential diagnoses, and treatment options for the main types of psychiatric emergency, as an aid to their rapid and effective management.
METHOD
Selective literature review.
RESULTS AND CONCLUSION
The frequency of psychiatric emergencies in non-psychiatric settings, such as general hospitals and doctors' offices, and their treatment are poorly documented by the few controlled studies and sparse reliable data that are now available. The existing evidence suggests that the diagnosis and treatment of psychiatric emergencies need improvement. The treatment of such cases places high demands on the physician's personality and conduct, aside from requiring relevant medical expertise. Essential components of successful treatment include the establishment of a stable, trusting relationship with the patient and the ability to "talk down" agitated patients calmly and patiently. A rapid and unambiguous decision about treatment, including consideration of the available options for effective pharmacotherapy, usually swiftly improves the acute manifestations.
Topics: Commitment of Mentally Ill; Cooperative Behavior; Dangerous Behavior; Diagnosis, Differential; Emergencies; Emergency Services, Psychiatric; Humans; Interdisciplinary Communication; Legal Guardians; Mental Competency; Mental Disorders; Physician-Patient Relations; Psychomotor Agitation; Psychotic Disorders; Psychotropic Drugs; Referral and Consultation; Substance-Related Disorders; Suicide; Suicide Prevention
PubMed: 21505610
DOI: 10.3238/arztebl.2011.0222