Shared Decision Making to Improve Palliative Care in the Nursing Home
| Status: | Active, not recruiting |
|---|---|
| Conditions: | Chronic Pain |
| Therapuetic Areas: | Musculoskeletal |
| Healthy: | No |
| Age Range: | 65 - Any |
| Updated: | 5/5/2018 |
| Start Date: | September 2016 |
| End Date: | December 31, 2018 |
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 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.
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 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.
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.
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.
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.
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