Promoting Self-determination for Institutionalized Older People Without Decision-making Capacity: Advance Care Planning by Proxy

NCT04779684 | Completed

• 1 other identifier: ACPbp
• Study Type: interventional
• Target: 20
• Locations: 1 country
• Sites: 1

Brief Summary

This study aims to test the acceptability and feasibility of an advance care planning (ACP) intervention which has been developed to be used with the health care proxies of residential aged care facility (RACF) residents who no longer have decision making capacity for medical decisions. The intervention involves two discussions that are facilitated by a trained health professional. The first discussion aims to discuss the resident's life story, values, previous medical treatments and experiences with illness and death and whether or not they have previously documented their wishes for future care. The second discussion also involves the treating physician and aims to document anticipatory decisions for emergency situations. Follow-up discussions after 12 months or any change in situation will be conducted.

Conditions

Advanced Dementia; Loss of Medical Decision Making Capacity

Keywords

Advance Care Planning by proxy; Surrogate decision making; Advanced Dementia; Decision making capacity

Outcome Measures

Primary Outcomes (2)

• Acceptability of the ACP by proxy intervention

  Acceptability of the intervention from the perspectives of health care proxies, RACF health professionals and physicians will be assessed through qualitative interviews asking about their experiences of the intervention. Interviews will be conducted 12 months after the start of the intervention

  12 months

• Feasibility of the ACP by proxy intervention in RACFs

  Feasibility of the intervention from the perspectives of health care proxies, RACF health professionals and physicians will be assessed through qualitative interviews asking about their experiences of the intervention. Interviews will be conducted 12 months after the start of the intervention.

  18 month

Secondary Outcomes (2)

• Decisional conflict

  18 months

• Self-efficacy in giving care concordent with resident wishes

  18 months

Study Arms (1)

ACP by proxy pilot intervention group

EXPERIMENTAL

All participants are included in the intervention group

Other: Advance care planning by proxy for health care proxies of people without medical decision making capacity

Interventions

Advance care planning by proxy for health care proxies of people without medical decision making capacity OTHER

Two discussions between a trained health professional and a health care proxy of an RACF resident who no longer has decision making capacity. First discussion focuses on life story, values, previous experiences with medical treatments, illness and death. Second discussion also includes treating physician and focuses on establishing general goals of care and medical orders in case of emergency.

ACP by proxy pilot intervention group

Eligibility Criteria

• Age: 70 Years - 110 Years
• Sex: all
• Healthy Volunteers: No
• Age Groups: Older Adult (65+)

You may qualify if:

• Is the legally authorized health care proxy for an RACF resident who: no longer has medical decision making capacity (according to medical judgement), is over 70 years of age and lives in an RACF in the canton of Vaud;
• Has sufficient language proficiency to complete a written questionnaire and participate in discussions.

You may not qualify if:

• Has insufficient language proficiency to complete a written questionnaire and participate in discussions.
• Lacks decision making capacity

Sponsors & Collaborators

• Ralf J. Jox: lead

Study Sites (1)

Lausanne University Hospital

Lausanne, Canton of Vaud, 1011, Switzerland

Location

Study Officials

• Ralf J Jox, MD,PhD

  University of Lausanne Hospitals

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: NA
• Masking: NONE
• Purpose: OTHER
• Intervention Model: SINGLE GROUP
• Sponsor Type: OTHER
• Responsible Party: SPONSOR INVESTIGATOR
• PI Title: Professor

Model Details: Pilot study of acceptability and fesability

Study Record Dates

• First Submitted: February 23, 2021
• First Posted: March 3, 2021
• Study Start: August 1, 2021
• Primary Completion: October 30, 2023
• Study Completion: October 31, 2023
• Last Updated: December 1, 2023

Record last verified: 2023-11

Data Sharing

• IPD Sharing: Will not share

Locations

CH (1)