Why Doesn't a Family Member of a Person With Advanced Dementia Use a Substituted Judgment When Making a Decision for That Person?

Hirschman, Karen B.; Kapo, Jennifer; Karlawish, Jason

doi:10.1097/01.jgp.0000203179.94036.69

Cited by 75 publications

(107 citation statements)

References 9 publications

Supporting

Mentioning

104

Contrasting

Unclassified

Order By: Relevance

“…In line with findings from other patient populations 99 Future ACP interventions are especially encouraged to incorporate the following strategies recommended by qualitative research: acknowledgement of the role that family can play, both positively and negatively, in ACP; reassurance to patients that their EOL wishes will be respected as a motivator for undertaking ACP; and distinguishing between decisions about dialysis withdrawal from choices about other life-sustaining treatments such as CPR and ventilation. The latter is particularly of interest because of results from a descriptive study suggesting that withdrawal from dialysis may be discussed less often than decisions about CPR and ventilation 50 , emphasising the need for a CKD-specific approach to ACP.…”

Section: Discussionmentioning

confidence: 98%

Advance Care Planning for Adults With CKD: A Systematic Integrative Review

Luckett

Sellars

Tieman

et al. 2014

American Journal of Kidney Diseases

106

View full text Add to dashboard Cite

show abstract

Section: Discussionmentioning

confidence: 98%

Advance Care Planning for Adults With CKD: A Systematic Integrative Review

Luckett

Sellars

Tieman

et al. 2014

American Journal of Kidney Diseases

106

View full text Add to dashboard Cite

show abstract

“…Details on the recruitment process are published elsewhere. 18 The overall response rate on the basis of those family members who were reached over the phone was 88%. One investigator (K.B.H.)…”

Section: Participantsmentioning

confidence: 99%

“…Without these discussions, families are left struggling to make decisions about nursing home placement 13,14 and end-of-life care 2,15-17 without the guidance of the patients' preferences. 18 The prevalence of this problem is likely to increase by the year 2050 when the number of persons with dementia in the United States is estimated to reach 11 to 16 million. 19 Although, advance care planning is appealing for dementia patients and their family members, little is known about the strategies that can facilitate advance care planning discussions or about the reasons why people do not have these discussions.…”

mentioning

confidence: 99%

Identifying the Factors That Facilitate or Hinder Advance Planning by Persons With Dementia

Hirschman

Kapo²,

Karlawish³

2008

Alzheimer Disease &Amp; Associated Disorders

Self Cite

143

View full text Add to dashboard Cite

We performed semistructured interviews with 30 family members of patients with advanced dementia to identify the factors that facilitate or hinder advance planning by persons with dementia. All interviews were analyzed using qualitative data analysis techniques. The majority (77%) of family members reported that their relative had some form of written advance directive, and at least half reported previous discussions about health care preferences (57%), living situation or placement issues (50%), and finances or estate planning (60%) with the patient. Family members reported some themes that prompted planning and others that were barriers to planning. Events that most often triggered planning were medical, living situation, or financial issues associated with a friend or family member of the patient (57%). Barriers to planning included both passive and active avoidance. The most common form of passive avoidance was not realizing the importance of planning until it was too late to have the discussion (63%). The most common form of active avoidance was avoiding the discussion (53%). These data suggest potentially remediable strategies to address barriers to advance planning discussions. Keywordsadvance care planning; Alzheimer disease; decision making; advance directivesIn the United States, policy makers, health professionals, and patient advocacy groups have promoted the process of advance care planning, that is, planning for future medical care in the event that a person is unable to make his or her own decisions at the end of life. Advance care planning allows persons with chronic and ultimately fatal illnesses to convey preferences to guide decisions when they cannot speak for themselves. 1,2 However, many people do not Reprints:

show abstract

“…Unexpectedly, we found that honoring their relatives’ current wishes was explicitly emphasized by many of the proxies interviewed, who often distinguished these from premorbid preferences. This notion does not clearly map onto the substituted judgment standard, which presumes that premorbid preferences are the “gold standard.” 25 Making the process still more complex, proxies often described trying to honor both past and present preferences. It is possible that the considerable weight given to patients’ current preferences may represent a type of best interests consideration—i.e., through their everyday experiences with patients, proxies learn how their tolerance for certain activities may have changed.…”

Section: Discussionmentioning

confidence: 99%

“Thinking About It for Somebody Else”: Alzheimer's Disease Research and Proxy Decision Makers' Translation of Ethical Principles Into Practice

Dunn

Fisher

Hantke

et al. 2013

The American Journal of Geriatric Psychiatry

View full text Add to dashboard Cite

Objectives Ethical guidelines suggest that, when enrolling dementia patients in research, alterative decisionmakers (proxies) should base their decision on a “substituted judgment” of how the patient would have decided. If unable to make a substituted judgment, proxies are asked to decide based on the patient’s best interests. This mixed-methods study is the first to examine explicitly whether and to what degree proxies differentiate between these two approaches, and what considerations influence their mode of decisionmaking. Design Interview study regarding enrollment of relative in hypothetical clinical trial of an investigational drug for Alzheimer’s disease (AD). Participants were randomized to respond to questions about one of four hypothetical clinical trials that differed by levels of described risk and potential benefit. Participants Proxy decisionmakers (n=40). Measurements Open-ended and rating-scaled items. Results Half of the proxies agreed with both of two rating-scaled items asking about different approaches to decisionmaking—i.e., agreeing that they would decide based on how their relative would have decided, and agreeing that they would decide based on what they believed was in their relative’s best interests. Narrative responses elaborated on themes within the following three major domains: Substituted Judgment, Best Interests, and Weighing Substituted Judgment and Best Interests. Substituted Judgment was framed as honoring the patient’s wishes and values. Best Interests was described as a perceived duty to maintain quality of life and avoid burdens or risks. Weighing the two standards emerged as a challenging, yet important, way of honoring wishes while maintaining quality of life. An unexpected theme was the attempt by alternative decisionmakers to discern their loved one’s current, vs. premorbid, research preferences. Conclusions Tensions exist between abstract ethical principles regarding decisionmaking “standards” and their translation into research decisions.

show abstract

Why Doesn't a Family Member of a Person With Advanced Dementia Use a Substituted Judgment When Making a Decision for That Person?

Cited by 75 publications

References 9 publications

Advance Care Planning for Adults With CKD: A Systematic Integrative Review

Advance Care Planning for Adults With CKD: A Systematic Integrative Review

Identifying the Factors That Facilitate or Hinder Advance Planning by Persons With Dementia

“Thinking About It for Somebody Else”: Alzheimer's Disease Research and Proxy Decision Makers' Translation of Ethical Principles Into Practice

Contact Info

Product

Resources

About