Dataset Information

Psychiatric Advance Directives Under the Convention on the Rights of Persons With Disabilities: Why Advance Instructions Should Be Able to Override Current Preferences.

ABSTRACT: Psychiatric advance directives (PADs) are documents by means of which mental health service users can make known their preferences regarding treatment in a future mental health crisis. Many states with explicit legal provisions for PADs have ratified the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD). While important UN bodies consider PADs a useful tool to promote the autonomy of service users, we show that an authoritative interpretation of the CRPD by the Committee on the Rights of Persons with Disabilities has the adverse consequence of rendering PADs ineffective in situations where they could be of most use to service users. Based on two clinical vignettes, we demonstrate that reasonable clinical recommendations can be derived from a more realistic and flexible CRPD model. Concerns remain about the accountability of support persons who give effect to PADs. A model that combines supported decision making with competence assessment is able to address these concerns.

SUBMITTER: Scholten M

PROVIDER: S-EPMC6749547 | biostudies-other | 2019

REPOSITORIES: biostudies-other

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Psychiatric Advance Directives Under the Convention on the Rights of Persons With Disabilities: Why Advance Instructions Should Be Able to Override Current Preferences.

Scholten Matthé M Gieselmann Astrid A Gather Jakov J Vollmann Jochen J

Frontiers in psychiatry 20190911

Psychiatric advance directives (PADs) are documents by means of which mental health service users can make known their preferences regarding treatment in a future mental health crisis. Many states with explicit legal provisions for PADs have ratified the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD). While important UN bodies consider PADs a useful tool to promote the autonomy of service users, we show that an authoritative interpretation of the CRPD by the Com ...[more]

PMID: 31572233

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Project description:ObjectiveAdvance directives (ADs) are integral to health care, allowing patients to specify surrogate decision-makers and treatment preferences in case of loss of capacity. The present study sought to identify determinants of ADs among stroke survivors.MethodsIn this cross-sectional study (Care Attitudes and Preferences in Stroke Survivors [CAPriSS]), community-dwelling stroke survivors were surveyed on ADs; validated scales were used to query palliative care knowledge and attitudes towards life-sustaining treatments. Logistic regression was used to determine variables associated with ADs.ResultsAmong 562 community-dwelling stroke survivors who entered the survey after screening questions confirmed eligibility, 421 (74.9%) completed survey components with relevant variables of interest. The median age was 69 years (IQR 58-75 years); 53.7% were male; and 15.0% were Black. Two hundred and fifty-one (59.6%) respondents had ADs. Compared to stroke survivors without ADs, those with ADs were more likely to be older (median age 72 vs. 61 years; p<0.001), White (91.2% vs. 75.9%, p<0.001), and male (58.6% vs. 46.5%, p = 0.015), and reported higher education (p<0.001) and income (p = 0.011). Ninety-eight (23.3%) participants had "never heard of palliative care". Compared to participants without ADs, participants with ADs had higher Palliative Care Knowledge Scale (PaCKS) scores (median 10 [IQR 5-12] vs. 7 [IQR 0-11], p<0.001), and lower scores on the Attitudes Towards Life-Sustaining Treatments Scale (indicating a more negative attitude towards life-sustaining treatments; median 23 [IQR 18-28] vs. 29 [IQR 24-35], p<0.001). Multivariable logistic regression identified age (OR 1.62 per 10 year increase, 95% CI 1.30-2.02; p<0.001), prior advance care planning discussion with a physician (OR 1.73, 95% CI 1.04-2.86; p = 0.034), PaCKS scores (OR 1.06 per 1 point increase, 95% CI 1.01-1.12; p = 0.018), and Attitudes Towards Life-Sustaining Treatments Scale scores (OR 0.91 per 1 point increase, 95% CI 0.88-0.95; p<0.001) as variables independently associated with ADs.ConclusionsAge, prior advance care planning discussion with a physician, palliative care knowledge, and attitudes towards life-sustaining treatments were independently associated with ADs.

Project description:BackgroundIn Mainland China, advance directives (ADs) and end-of-life care for patients with tumours, especially patients with brain tumours who may have lost consciousness or the ability to speak at the early stage of their illness, have been poorly acknowledged. Thus, this study aimed to clarify the knowledge and preferences of ADs and end-of-life care in patients with brain tumours and to investigate predictors of patient preferences.MethodsThis was a population-based cross-sectional survey that was conducted via face-to-face interviews. Information on sociodemographic factors, brain tumour illness, knowledge and preferences of the advanced decisions and end-of-life care of the patients was collected.ResultsA total of 88.61% of participants had never heard of ADs, but 65.18% reported that they would like to make ADs. Knowledge of ADs, receiving surgical treatment or radiotherapy, being younger than 70?years old, being male, having educational qualifications of college or beyond, being childless, having medical insurance for nonworking or working urban residents and self-paying medical expenses were predictors of preference for making ADs. A total of 79.43% of participants wanted to discuss end-of-life arrangements with medical staff, and 63.29% of participants were willing to receive end-of-life care, even though it would not delay death. A total of 65.82% of patients with brain tumours wanted resuscitation, and as many as 45.45% of the patients thought that they did not need life support if they were in a persistent vegetative state. Brain primary tumours, being younger than 70?years old, male sex, educational qualification of junior middle school or below, having children, having new rural cooperative medical insurance and having medical expenses paid by children or spouses were predictors of choosing appropriate palliative care.ConclusionsADs and end-of-life care have been poorly acknowledged among patients with brain tumours in mainland China. Additional efforts should be encouraged amongst patients with primary brain tumours, those who are undergoing surgery and radiotherapy and those who have low socioeconomic status. A longitudinal and comprehensive study is encouraged to promote disease-specific ADs among Chinese patients with brain tumours.

Dataset Information

Psychiatric Advance Directives Under the Convention on the Rights of Persons With Disabilities: Why Advance Instructions Should Be Able to Override Current Preferences.

Publications

Psychiatric Advance Directives Under the Convention on the Rights of Persons With Disabilities: Why Advance Instructions Should Be Able to Override Current Preferences.

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