CompletedNot Applicable

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

Switzerland20 participantsStarted 2021-08-01

Plain-language 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.

Who can participate

Age range

70 Years – 110 Years

Sex

ALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

Health Care Proxy Inclusion Criteria: * 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. Health Care Proxy Exclusion Criteria: * Has insufficient language proficiency to complete a written questionnaire and participate in discussions. * Lacks decision making capacity

Questions worth asking your doctor

Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.

1Based on my diagnosis and history, is this trial worth exploring for me — or is there a standard treatment we should try first?
2What does this trial's phase tell us about how much is already known about its safety and benefit?
3What would taking part actually involve for me — visits, tests, time, and travel?
4What are the known and possible risks or side effects I should weigh, and how would they be monitored?
5If this trial isn't the right fit, what other options or trials would you suggest I look into?

Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.

Questions for the trial coordinator

The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.

1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?

A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.

What they're measuring

Acceptability of the ACP by proxy intervention

Timeframe: 12 months

Feasibility of the ACP by proxy intervention in RACFs

Timeframe: 18 month

Trial details

NCT IDNCT04779684

SponsorRalf J. Jox

Sponsor typeOTHER

Study typeINTERVENTIONAL

Primary completion2023-10-30

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