Literature DB >> 31179811

Walking the Tightrope between Study Participant Autonomy and Researcher Integrity: The Case Study of a Research Participant with Alzheimer's Disease Pursuing Euthanasia in Switzerland.

Elena Portacolone1, Kenneth E Covinsky1, Julene K Johnson1, Robert L Rubinstein2, Jodi Halpern3.   

Abstract

This article addresses ethical issues in the conduct of ethnographic research with vulnerable study participants, such as individuals with cognitive impairment. Seven ethical issues emerged from this case study, in which a participant diagnosed with Alzheimer's disease wished to pursue euthanasia in Switzerland: (a) How to protect the participant's autonomy while ensuring his decision had not resulted from untreated depression or modifiable social factors; (b) How to interpret self-harm; (c) How to protect the research team members' "mandated reporter" status; (d) How to counteract the attractive qualities of pro-euthanasia videos depicting an easy end to personal suffering; (e) How to find a better alternative to the common practice of reporting self-harm cases to Adult Protective Services and then removing these cases from studies; (f) How to leverage a participant's trust to address these issues; and (g) Whether researchers should do anything further to help address unmet needs in similar situations.

Entities:  

Keywords:  Alzheimer’s disease; Euthanasia; Switzerland; adverse events; cognitive impairment; ethics; qualitative research; suicide

Mesh:

Year:  2019        PMID: 31179811      PMCID: PMC6884661          DOI: 10.1177/1556264619853198

Source DB:  PubMed          Journal:  J Empir Res Hum Res Ethics        ISSN: 1556-2646            Impact factor:   1.742


  3 in total

1.  The Precarity of Older Adults Living Alone With Cognitive Impairment.

Authors:  Elena Portacolone; Robert L Rubinstein; Kenneth E Covinsky; Jodi Halpern; Julene K Johnson
Journal:  Gerontologist       Date:  2019-03-14

2.  The Effects and Meanings of Receiving a Diagnosis of Mild Cognitive Impairment or Alzheimer's Disease When One Lives Alone.

Authors:  Elena Portacolone; Julene K Johnson; Kenneth E Covinsky; Jodi Halpern; Robert L Rubinstein
Journal:  J Alzheimers Dis       Date:  2018       Impact factor: 4.472

3.  Potentially Unsafe Activities and Living Conditions of Older Adults with Dementia.

Authors:  Halima Amjad; David L Roth; Quincy M Samus; Sevil Yasar; Jennifer L Wolff
Journal:  J Am Geriatr Soc       Date:  2016-06-02       Impact factor: 5.562

  3 in total
  4 in total

1.  Expectations and Concerns of Older Adults With Cognitive Impairment About Their Relationship With Medical Providers: A Call for Therapeutic Alliances.

Authors:  Elena Portacolone; Kenneth E Covinsky; Julene K Johnson; Jodi Halpern
Journal:  Qual Health Res       Date:  2020-06-20

2.  Difficulty and help with activities of daily living among older adults living alone with cognitive impairment.

Authors:  Ryan D Edwards; Willa D Brenowitz; Elena Portacolone; Ken E Covinsky; Andrew Bindman; M Maria Glymour; Jacqueline M Torres
Journal:  Alzheimers Dement       Date:  2020-06-26       Impact factor: 21.566

3.  The Living Alone with Cognitive Impairment Project's Policy Advisory Group on Long-Term Services and Supports: Setting a Research Equity Agenda.

Authors:  Elena Portacolone; Jacqueline M Torres; Julene K Johnson; Donna Benton; Thomas Rapp; Thi Tran; Paula Martinez; Carrie Graham
Journal:  Int J Environ Res Public Health       Date:  2022-05-16       Impact factor: 4.614

4.  Addressing Suicide Risk in Patients Living With Dementia During the COVID-19 Pandemic and Beyond.

Authors:  Elena Portacolone; Amy L Byers; Jodi Halpern; Deborah E Barnes
Journal:  Gerontologist       Date:  2022-08-12
  4 in total

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