Shared Decision Making to Improve Palliative Care in the Nursing Home

NCT ID: NCT02917603

Last Updated: 2021-01-20

Basic Information

• Recruitment Status: COMPLETED
• Clinical Phase: NA
• Total Enrollment: 40 participants
• Study Classification: INTERVENTIONAL
• Study Start Date: 2016-09-01
• Study Completion Date: 2018-03-31

Brief Summary

Twenty-eight percent of Americans over the age of 65 die in a nursing home. Research has found the quality of care of end-of-life care in nursing homes to have many challenges. It has also been documented that family members, especially those living at a distance, want to be involved in the care of their resident and family support can be beneficial to residents. Family members' involvement in decision-making in the nursing home setting improves outcomes for residents with life-limiting illnesses. Shared decision-making (SDM) is a process wherein a healthcare choice is jointly made by a healthcare provider and a resident or resident's proxy, often a family member. This proposal seeks to facilitate SDM among family members, residents with life-limiting illnesses (who are not enrolled in hospice), and the nursing home care team. The overall research question (RQ) asks: To what extent are outcomes for family member and residents with life limiting illnesses associated with SDM via web-conferencing in the nursing home? The overall hypothesis (H) is that SDM among family members, residents (when possible), and skilled nursing home staff via web-conferencing will improve outcomes for family members and residents with life-limiting illnesses. This is an exploratory mixed methods randomized clinical trial pilot to test the effect of shared decision making using web-based conferencing on the depression and burden of family members and the pain of nursing home residents.

Detailed Description

Twenty-eight percent of Americans over the age of 65 die in a nursing home. Research has found that the quality of care at the end of life in these facilities is less than adequate. While some residents improve their care with the use of the Hospice Medicare benefit, considerable barriers remain for the majority of nursing home residents who do not enroll in hospice but have a serious illness. This project focuses on improving palliative care for geriatric nursing home residents who are not receiving hospice care. Two systematic reviews of end-of-life care in nursing homes found challenges in symptom burden, including unmanaged pain, inadequate discussions regarding goals of care and advance directives, poor communication, unmet family expectations, and inadequate staff education.

Residents' values, beliefs, and goals are often unknown by nursing home staff. Dementia, illness, or poor communication may prevent residents from articulating their wishes regarding care. In many cases, family members can act as mediators between the resident and staff as plans of care are developed and decisions are made. Despite the desire to remain involved in care of the nursing home resident, many family members are unable to be physically present in the nursing home and experience loss of control, dis-empowerment, and guilt. As frailty increases and goals of care become increasingly palliative, the frustrations and burdens for families can worsen. Family members, especially those living at a distance, want to be involved in the care of their resident, and their involvement in decision-making can improve outcomes for residents with serious illnesses.

This project facilitates SDM (shared decision making) among family members, residents with serious illnesses (not enrolled in hospice), and the nursing home care team. Based on a family-identified need, this proposal facilitates SDM among family members, residents with serious illnesses (not enrolled in hospice), and the nursing home care team.

Conditions

Pain

Study Design

• Allocation Method: RANDOMIZED
• Intervention Model: PARALLEL
• Primary Study Purpose: SUPPORTIVE_CARE
• Blinding Strategy: NONE

Study Groups

Intervention

These family members and residents will use web conferencing technology to attend their quarterly care conferences

Group Type: EXPERIMENTAL

Web Conferencing

Intervention Type: BEHAVIORAL

Individuals will communicate with the nursing home team via web conferencing during quarterly care conference

Control

These family and residents will receive usual care

Group Type: NO_INTERVENTION

No interventions assigned to this group

Interventions

Web Conferencing

Individuals will communicate with the nursing home team via web conferencing during quarterly care conference

Intervention Type: BEHAVIORAL

Eligibility Criteria

Inclusion Criteria

• Residents: Residents of The Bluffs nursing home, Columbia Missouri, over the age of 65, have at least one family member who agrees to participate, and have a serious life limiting illness. Residents enrolled in hospice or admitted to post hospital short term nursing home stay are excluded from participation.
• Family Members: Identified family member by a resident or nursing home staff at The Bluffs, over the age of 18, without cognitive impairment, and with access to a computer, tablet, or smartphone device.

Exclusion Criteria

• Residents enrolled in hospice can not participate.

• Minimum Eligible Age: 65 Years
• Eligible Sex: ALL
• Accepts Healthy Volunteers: No

Sponsors

University of Washington

OTHER

Sponsor Role: collaborator

Washington University School of Medicine

OTHER

Sponsor Role: lead

Responsible Party

Debra Parker Oliver

Professor

Responsibility Role: PRINCIPAL_INVESTIGATOR

Principal Investigators

Debra Oliver, PhD

Role: PRINCIPAL_INVESTIGATOR

University of Missouri-Columbia

Locations

The Bluffs

Columbia, Missouri, United States

Countries

United States

References

Oliver DP, Rolbiecki AJ, Washington K, Kruse RL, Popejoy L, Smith JB, Demiris G. A Pilot Study of An Intervention to Increase Family Member Involvement in Nursing Home Care Plan Meetings. J Appl Gerontol. 2021 Sep;40(9):1080-1086. doi: 10.1177/0733464820946927. Epub 2020 Aug 13.

Reference Type: DERIVED

PMID: 32787506 (View on PubMed)

Provided Documents

Document Type: Informed Consent Form

View Document

Document Type: Study Protocol and Statistical Analysis Plan

View Document

Other Identifiers

2003012

Identifier Type: -

Identifier Source: org_study_id