What Is Hospice Respite Care? Definition & FAQs

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Certified Care Manager, Aging Life Care Professional, and National Master Guardian Emeritus

Hospice care is a philosophy of care wrapped in medical and support services for people at the end of life. A team of hospice professionals creates a plan of care for your loved one that considers their terminal diagnosis, pain level, functional ability, and emotional and spiritual needs.

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Medicare covers the cost of hospice, but you must meet specific criteria to qualify for hospice and the other services. One of the little-known benefits of hospice is respite care. The hospice team understands the pressure and emotional impact of caring for someone at the end of life. Family members are very involved in providing care to a loved one, and caregiver burnout is a serious concern. 

To address the problem of caregiver stress, Medicare allows a benefit called respite care under certain circumstances. If your loved one is not in hospice, respite care is available through other state and local programs. We will discuss respite care under hospice, how to use it, and alternatives to respite care if you have exhausted the benefit. 

Hospice Respite Care Definition

Respite care is short-term inpatient care provided to the patient only when necessary to relieve caregiver stress for family members or anyone else caring for that individual. Respite care is only approved for five consecutive days, with no more than one respite period in a single billing period, usually 90 days.

Inpatient respite has to be approved by the hospice director and takes place in a Medicare-certified hospice facility. The facility must have the capability of managing all of the care needs of the hospice patient.

Some places where hospice respite can not be provided are assisted living, nursing homes, or patient's residence. There might be a free-standing hospice facility that can act as a respite location in some cases. 

What Are the Benefits of Hospice Respite Care?

The benefits of hospice respite care are numerous. Five days might not seem long, but it can be a lifeline for exhausted caregivers. Here are a few of the benefits of respite care:

  • Caregivers can get relief from the daily tasks that are physically and emotionally draining. The time off can allow caregivers to recharge and rest. Time away from caregiving duties can improve your health and give you the energy to resume caregiving. The adverse mental and physical health consequences of caregiving are well-documented.
  • Respite care permits caregivers time to attend important events like weddings or graduations. Also, respite allows someone to focus on family issues or take time to spend with friends and accomplish vital tasks that have been delayed.
  • Sometimes caregiving for a loved one can create resentment and frustration. The mental break from caregiving can provide an emotional reset and allow for a more stable return to caring for your loved one. 
  • Respite care can give the family time to reassess the caregiving situation and make plans for paid caregiving or other alternatives if the primary caregiver is unavailable. Hospice care rarely provides 24-hour care, so arranging for additional support takes time.
  • Respite care can improve your sleep, appetite, and energy while reducing stress levels.
  • Your loved one may also appreciate the opportunity to give you a break from caregiving duties. Some patients feel guilt over their family taking time to care for them.

Who Qualifies for Hospice Respite Care?

The qualifications for hospice respite care are guided by Medicare and approved by the hospice company you have in place. They include:

  • The hospice team approves the request for respite and arranges for a contracted facility to take care of your loved one.
  • The caregiver needs relief from caregiving responsibilities for a short time and can continue caring for the patient at home again.
  • The caregiver is temporarily unable to provide care to the beneficiary because of personal illness.
  • The caregiver needs to leave town.
  • The caregiver wants to attend a family event such as a graduation, wedding, etc. 

Situations that do Not Qualify for Hospice Respite

There are situations in which respite care is not appropriate and will not be approved: 

  • The patient does not have a caregiver providing care in the home regularly.
  • The patient is already in 24-hour care at a care facility, and the desire for respite care is not related to a patient caregiver's need.
  • The respite care was provided in a hospice inpatient unit, a skilled nursing facility (SNF), or a nursing facility that already meets the special hospice standards. If a loved one is in a nursing facility, they are already receiving 24-hour care and may not qualify for hospice and, therefore, respite. 

How Do You Pay for Hospice Respite Care?

If the Medicare-approved criteria are met for hospice respite, then Medicare will pay for hospice respite. But, if you don’t meet the requirements or have already exhausted the benefit and still need respite, there are other options to pay for respite. If you choose a free-standing hospice facility, you will want to check to ensure that Medicare will pay for the room and board costs. 

  • If your loved one is a veteran, there could be payment options or programs through your local VA.
  • If your loved one has long-term care insurance, they may cover respite care but check with the provider to review benefits. Your loved one’s long-term care insurance policy could already be paying out cash benefits, but they could have a respite option.
  • You could consider covering your loved one’s respite care through private pay options. Some care centers may have sliding fee options for short-term respite care. 

How Do You Arrange Hospice Respite Care?

Since hospice respite care is limited, you will want to carefully consider when is the right time to arrange for respite care. Your hospice company must make arrangements with a contracted facility to ensure that Medicare will cover the cost and you won’t compromise hospice benefits. 

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Select your respite time well in advance

It may not be possible, but select your respite time in advance. If a wedding is coming up, plan it. Or arrange a trip with friends or leave town for work obligations. Hospice may need some time to make the respite arrangements.

Talk with your loved one

Talk ahead of time with your loved ones to allow them to express any reservations or concerns. Going to another setting could be distressing, and you will want to reassure them that they will be cared for and the situation is temporary. Being cared for by a stranger for a time can be anxiety-provoking. Encourage friends and other family members to visit your loved one often while in respite care. 

Pick your time wisely

You may be limited to several respite periods, so pick your time wisely. Getting caregiver relief is important, but so are once-in-a-lifetime events that may have significant meaning to you. Reviewing the most critical events will help you make a good decision about when to take respite.

Notify the hospice nurse 

Notify the hospice nurse that you would like to take a respite and give specifics about the dates and times you will be away. The hospice nurse will determine your eligibility and inform the team that you will be taking a few days to yourself. The hospice company will need to arrange for the transfer of your loved one to a contracted Medicare facility.

What Are Your Alternatives If You Can’t Receive Hospice Respite Care?

There are some alternatives if you can’t receive hospice respite care. Some will involve paying for respite, and others are ideas on how to take time off when you need it. It is normal for family caregivers to be challenged by taking care of a loved one on hospice. Hospice supports people at the end of life, but not with round-the-clock care. As the primary caregiver, you may provide other care for your loved one when hospice is not there. The question is how to replace yourself so you can take time off. 

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Involve other family members

If you are the primary caregiver, think about involving other family members for the few days you are gone. Since it is time-limited, others may be more willing to pitch in—plan on delegating and leaving detailed instructions on care, including likes and dislikes and a schedule.

Assisted living respite

Assisted living respite is possible, but it might be tricky if your loved one is in a hospital bed. Assisted living communities have furnished rooms but not access to a hospital bed. Respite rooms are fully furnished, and hospice could continue providing services while staff augments care. Most assisted living communities charge a per-day rate for respite care.

In-home care

In-home care can be a logical but expensive option to provide care while on respite. Hours are flexible, but in-home workers in most states are restricted to assistance with daily living tasks, which might be all you need. If you have been providing quasi-medical tasks for your loved one, in-home caregivers may be unable to perform those same duties. 

Private pay nursing home

It might be possible to pay privately for a week at a nursing home, but you will want to check with the hospice to ensure that this choice doesn’t compromise your hospice benefit. Even with a negotiated daily rate, paying for nursing home care will be costly.

Hospice respite care

Respite care is one of the many hospice benefits available to families at the end of life. Take time to meet with your loved one’s hospice nurse to review benefits and find the care you and your loved one are entitled to. Hospice rules and regulations can be challenging to understand, but the more you know, the more support you can access.

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