Promoting Informed Decision Making Through Advance Care Planning

Queen's University Belfast

Status: Unknown

Conditions: Neurodegenerative Diseases; Dementia

Treatments: Other: Project Nurse - ACP Facilitator; Other: 'Comfort Care at the End of Life for Persons with Dementia'

Study type: Interventional

Funder types: Other

Identifiers

NCT02211287

B14/25

Details and patient eligibility

About

The purpose of this study is to evaluate the application of a best-practice Advance Care Planning (ACP) model for individuals living with dementia in a sample of nursing homes in Northern Ireland

Enrollment: 420 estimated patients

Sex: All

Ages: 18+ years old

Volunteers: No Healthy Volunteers

Inclusion criteria

1. Family Caregivers

   • Family caregivers of a resident who does not have decision making capacity to participate in ACP discussion
   • Individuals identified by the nursing home manager as the family member who possess power of attorney for personal care and/or viewed by the nursing home staff as most involved in the care of the resident who does not have decision making capacity.

2. Health Care Professionals

Nursing home managers, registered nursing staff and GPs who:

• are employed, or in the case of GPs, care for residents, in the six nursing homes that were part of the intervention group
• were familiar with the intervention to discuss its strengths and weaknesses in an interview
• are able to speak English as they are required to participate in interviews.

Exclusion criteria

• Family caregivers and health care professionals who are unable to communicate through written and spoken English.
• Family caregivers who has a family resident considered to have the ability to participate in ACP discussions.

Trial design

420 participants in 2 patient groups

Intervention

Experimental group

Description:

The intervention will include five key elements: a Project Nurse - ACP facilitator; family education on comfort care at the end of life for individuals with dementia using the 'Comfort Care at the end of life for persons with dementia' booklet; a family meeting with follow-up telephone call; documentation of ACP decisions, and orientation and education directed towards General Practitioners (GPs) and nursing home staff about the intervention.

Treatment:

Other: 'Comfort Care at the End of Life for Persons with Dementia'

Other: Project Nurse - ACP Facilitator

Usual care

No Intervention group

Description:

Care will continue as usual for the nursing home residents