Lilacs & Greensleeves: Hospice and Respite Care
How Respite Care Brings Relief for Caregiver Burnout
Demands of Caregiving
Caregiving for someone who is ill can be stressful, but when that someone is in the final stages of life, caregiving takes on different challenges. Care requirements are often escalated, with medications given more frequently, special wound care that may be needed, as well as assistance with feeding and toileting. The uncertainty of when death will occur also puts emotional pressure on the caregiver.
All of this can cause caregivers to lose sleep and live in isolation and fear, which can result in depression, fatigue and anxiety, also referred to as “caregiver burnout.”¹ To deter this, it is essential that those taking care of the dying also take care of themselves by getting plenty of rest and making time for themselves away from the demands of caregiving.
End-of-life patients receiving hospice services are eligible for “respite care,” defined and covered by the Medicare hospice benefit. Hospice respite care allows a family caregiver to get a break from caregiving duties while the patient is cared for in a Medicare-certified inpatient facility.
See a list of all VITAS Inpatient Hospice Unit locations
What Is Respite Care?
Medicare defines respite care as, “… short-term inpatient care provided to the individual only when necessary to relieve the family members or the person caring for the individual at home.”²
Situations that are considered necessary include:
Caregivers who may be suffering from physical or emotional exhaustion from taking care of a patient around the clock
Caregivers who would like to attend a family event such as a graduation, wedding, funeral, etc.
Caregivers who become ill and cannot take care of the patient.
Who Provides Respite Care?
In the event of these kinds of situations, the hospice benefit pays for a patient to stay in a Medicare-certified facility for up to five days and nights while the caregiver is away. Members of the hospice care team, who are in a position to notice the symptoms of caregiver burnout, can ask the team physician to provide orders to admit a patient into a Medicare-approved facility, such as a hospice inpatient unit, a bed in a hospital contracted by the hospice, or a nursing home.
Once the patient is admitted, the hospice team continues to expedite the patient’s plan of care, while the facility staff provides the care that would have been given by the family caregiver. Under the hospice benefit, inpatient respite care can be provided on an occasional basis, ensuring that the caregiver can relax and enjoy time away knowing his or her loved one is in good hands.
Not every caregiver needs a break of up to five days and nights, which respite care provides. Relief from caregiving can also be provided by other means. When a hospice care team member, including a hospice volunteer, arrives [at the home] or a trusted friend is visiting [the home], the family caregiver may utilize that time to run errands, take a walk or meet friends.
Re-energizing the Caregiver with Respite Care
Spending time with others or taking a short trip can help caregivers catch up on much needed rest, gain perspective and foster a more positive attitude. To get the most from respite care, caregivers are encouraged to plan ahead to decide how they will spend this time. The ARCH National Respite Network and Resource Center recommends that caregivers take regular and sufficient amounts of respite time and make this a meaningful and purposeful break from routine³.
Respite Care is One of Our Four Levels of Care
VITAS offers four broad types, or levels, of care as defined by the Medicare hospice benefit:
Routine home care. This is how we provide hospice care most often: in patients’ homes, long-term care facilities and nursing homes.
Continuous care (Intensive Comfort Care®). When medically necessary, acute symptom management is provided at home or in another facility by hospice staff in shifts of up to 24 hours/day so the patient can avoid hospitalization.
Inpatient care. If a patient’s needs cannot be managed at home, VITAS inpatient hospice units and special arrangements at other local facilities provide hospice care around the clock until the patient can return home.
Respite care. Limited to up to five consecutive days, respite care provides a brief “respite” for the patient’s primary caregiver by admitting the home care patient to an institutional setting without meeting the “inpatient” pain and symptom management criteria.