Decision-making on behalf of people living with dementia: how do surrogate decision-makers decide?

Deirdre Fetherstonhaugh, Linda McAuliffe, Michael Bauer, Chris Shanley
J Med Ethics
doi:10.1136/medethics-2015-103301

Abstract

Background
For people living with dementia, the capacity to make important decisions about themselves diminishes as their condition advances. As a result, important decisions (affecting lifestyle, medical treatment and end of life) become the responsibility of someone else, as the surrogate decision-maker. This study investigated how surrogate decision-makers make important decisions on behalf of a person living with dementia.

Methods
Semi-structured interviews were conducted with 34 family members who had formally or informally taken on the role of surrogate decision-maker. Thematic analysis of interviews was undertaken, which involved identifying, analysing and reporting themes arising from the data.

Results
Analysis revealed three main themes associated with the process of surrogate decision-making in dementia: knowing the person's wishes; consulting with others and striking a balance. Most participants reported that there was not an advance care plan in place for the person living with dementia. Even when the prior wishes of the person with dementia were known, the process of decision-making was often fraught with complexity.

Discussion
Surrogate decision-making on behalf of a person living with dementia is often a difficult process. Advance care planning can play an important role in supporting this process. Healthcare professionals can recognise the challenges that surrogate decision-makers face and support them through advance care planning in a way that suits their needs and circumstances.

The article is here.

Informed Consent Procedures with Cognitively Impaired Patients: A Review of Ethics and Best Practices

By L. M. Field and J. D. Calvert
Psychiatry Clin Neurosci. 2015 Mar 10
doi: 10.1111/pcn.12289

Abstract

AIM:

The objectives of this paper are to discuss ethical issues of informed consent in cognitively impaired patients and review considerations for capacity determination. We will also discuss how to evaluate capacity, determine competence, and obtain informed consent when a patient is deemed incompetent. This review emphasizes how to carry out informed consent procedures when capacity is questionable and discusses measures supported for use when determining cognitively impaired patients' ability to consent.

METHODS:

Information was gathered from medical and psychological codes of ethics, peer-reviewed journals, published guidelines from healthcare organizations (e.g., American Medical Association), and scholarly books. Google Scholar and PsycINFO were searched for articles related to "informed consent" and "cognitive impairment" published in English between 1975 and 2014. Relevant sources referenced in retrieved publications were subsequently searched and reviewed.

RESULTS:

We selected 43 sources generated by our search. Sources were included in our review if they presented information related to at least one of our focus areas. These areas included: review of informed consent ethics and procedures, review of cognitive impairment evaluations, recommendations for measuring cognitive capacity, and alternative forms of informed consent.

CONCLUSIONS:

Patients' cognitive impairments can hinder the ability of patients to understand treatment options. Evaluating the capacity of patients with cognitive impairment to understand treatment options is vital for valid informed consent and should be guided by best practices. Thus, proper identification of patients with questionable capacity, capacity evaluation, and determination of competence, as well as reliance upon appropriate alternative consent procedures, are paramount.

The article is here.