Shared Decision Making to Improve Palliative Care in the Nursing Home
Study Overview
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.
Study Type
Enrollment (Actual)
Phase
- Not Applicable
Contacts and Locations
Study Locations
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Missouri
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Columbia, Missouri, United States, 65203
- The Bluffs
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Participation Criteria
Eligibility Criteria
Ages Eligible for Study
Accepts Healthy Volunteers
Genders Eligible for Study
Description
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.
Study Plan
How is the study designed?
Design Details
- Primary Purpose: Supportive Care
- Allocation: Randomized
- Interventional Model: Parallel Assignment
- Masking: None (Open Label)
Arms and Interventions
Participant Group / Arm |
Intervention / Treatment |
|---|---|
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Experimental: Intervention
These family members and residents will use web conferencing technology to attend their quarterly care conferences
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Individuals will communicate with the nursing home team via web conferencing during quarterly care conference
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No Intervention: Control
These family and residents will receive usual care
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What is the study measuring?
Primary Outcome Measures
Outcome Measure |
Measure Description |
Time Frame |
|---|---|---|
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Difference in Mean Patient Health Questionaire 9 Score From Baseline
Time Frame: 30 days
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9 questions that indicate depression- taken at 30 days-Scale is 0-27 with higher values representing more depression.
Measure collected every 30 days.
Analysis is a comparison of means between the last measure taken and the baseline scores- with an overall average then computed.
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30 days
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Secondary Outcome Measures
Outcome Measure |
Measure Description |
Time Frame |
|---|---|---|
|
Zarit Burden Interview
Time Frame: 30 days
|
Family members will report which of their responsibilities are perceived as burdensome.
Response options for each item range from 0-4, and total scores range from 0-88, with higher scores indicating greater self-reported burden.
Total score computed with an average score response.
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30 days
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Generalized Anxiety- 7
Time Frame: 30 days
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7 questions that measure family member anxiety.
It has 7 items and is scored 0-21 with a higher number representing greater anxiety.
A total score is computed.
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30 days
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Caregiver Quality of Life
Time Frame: 30 days
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4 questions pertaining to family quality of life.
There are 4 items each scored 0-9 with a total score of 0 to 36 and higher scores representing poorer quality of life.
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30 days
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Collaborators and Investigators
Collaborators
Investigators
- Principal Investigator: Debra Oliver, PhD, University of Missouri-Columbia
Publications and helpful links
Study record dates
Study Major Dates
Study Start (Actual)
Primary Completion (Actual)
Study Completion (Actual)
Study Registration Dates
First Submitted
First Submitted That Met QC Criteria
First Posted (Estimate)
Study Record Updates
Last Update Posted (Actual)
Last Update Submitted That Met QC Criteria
Last Verified
More Information
Terms related to this study
Other Study ID Numbers
- 2003012
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