Barriers to Obtaining Consent in Dementia Research: Implications for Surrogate Decision‐Making

Baskin, Shari A.; Morris, Jane; Ahronheim, Judith C.; Meier, Diane E.; Morrison, R. Sean

doi:10.1111/j.1532-5415.1998.tb01039.x

Cited by 40 publications

(33 citation statements)

References 12 publications

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“…As previously reported, very few surroforgo certain treatments among the intervention gates approached for consent refused to enroll the groups. It is possible that larger numbers might patient in the study (12). have revealed differences in certain categories.…”

Section: Resultsmentioning

confidence: 94%

Palliative Care in Advanced Dementia: A Randomized Controlled Trial and Descriptive Analysis

Ahronheim

Morrison²,

Morris³

et al. 2000

Journal of Palliative Medicine

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139

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It was difficult for a palliative care research team to influence the care of advanced dementia patients in the acute hospital setting. When patients have advanced dementia, there may be unique barriers, including perceived prognostic uncertainty, difficulty assessing comfort level, and perceptions about tube feeding. There must be a reexamination of treatment approaches for this severely impaired group of patients. Further study should attempt to identify patients prior to the need for acute hospitalization so goals can be established when there is less urgency to make life and death decisions.

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Section: Resultsmentioning

confidence: 94%

Palliative Care in Advanced Dementia: A Randomized Controlled Trial and Descriptive Analysis

Ahronheim

Morrison²,

Morris³

et al. 2000

Journal of Palliative Medicine

Self Cite

139

View full text Add to dashboard Cite

show abstract

“…Third, another potential problem that may be mitigated with a family decision-making approach is that designated surrogates for dementia patients may need assistance to serve adequately in this role (Baskin et al, 1998). Prior research has shown that, even when patients are fully capacitous, the assistance of a close relative or friend can help the patient better understand the medical options available (Frost, 1975).…”

Section: Rationale For Including Family Membersmentioning

confidence: 98%

Surrogate Decision Making for Genetic Testing for Alzheimer Disease

Eaton¹

1999

Genetic Testing

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Genetic tests are commercially available for the purpose of aiding in the differential diagnosis of Alzheimer disease among patients with dementia. Such patients often lack the mental capacity to consent to or reject such testing. If genetic testing is to be undertaken, it is important legally and ethically to consider who should participate in the decision to test. State law and the patient's previously expressed wishes will determine which individual should serve as the surrogate decision maker. Other family members should be included in the discussion of the decision, and their assent to the surrogate's decision should be sought.

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“…Who that person should be is a vital question, which has been much debated in the literature. A family member is assumed to have the best knowledge of the patient's preferences and values earlier in life but is not always available or willing to participate (Baskin et al, 1998). Various reasons have been reported for giving informed consent, such as hope of direct or indirect benefits, desperation, trust in the investigator, belief in the goodness of research, and altruism (Sugarman et a]., In Sweden, a vulnerable person may be under the protection of a legal representative whose primary role is to see to the person's best interests, in particular his/her financial affairs, but has no authority by law to give approval for participation in research.…”

Section: Selection Of Proxy Decision-makersmentioning

confidence: 99%

Alzheimer Disease Ethics—Informed Consent and Related Issues in Clinical Trials: Results of a Survey Among the Members of the Research Ethics Committees in Sweden

Peterson¹,

Wallin

2003

Int. Psychogeriatr.

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The rapid advances in biomedical sciences have induced special moral and ethical attitudes, which ought to be taken into account. One of the most essential issues is the principles for participation in research of subjects with reduced decision-making capacity.We conducted a questionnaire survey among members of the research ethics committees in Sweden to find out their attitudes to a range of ethical issues related to research on subjects with Alzheimer's disease. One hundred thirty-six of those approached responded (66%), and 117 of the responses (56%) were considered substantially complete. There were 16 questions with fixed reply alternatives. Some central questions concerned the informed consent process. With a few exceptions, there were no significant differences in attitudes between the experts and laypersons, between persons of different ages, and between men and women. However, women and laypersons were in general keener to preserve the patient's integrity and the experts were more willing than the laypersons to allow participation of subjects with dementia in placebo-controlled trials.

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Barriers to Obtaining Consent in Dementia Research: Implications for Surrogate Decision‐Making

Abstract: Absence of functional surrogate decision-makers is a major barrier to research and clinical decision-making for hospitalized patients with advanced dementia.

Cited by 40 publications

References 12 publications

Palliative Care in Advanced Dementia: A Randomized Controlled Trial and Descriptive Analysis

Palliative Care in Advanced Dementia: A Randomized Controlled Trial and Descriptive Analysis

Surrogate Decision Making for Genetic Testing for Alzheimer Disease

Alzheimer Disease Ethics—Informed Consent and Related Issues in Clinical Trials: Results of a Survey Among the Members of the Research Ethics Committees in Sweden

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