What Caregivers Need to Know about At Home Hospice Care

Caring for a family member at home can be a meaningful gift for someone with a life-limiting illness. A study by the Henry J. Kaiser Family Foundation found that most of us would prefer to die at home. It also revealed that we don't want to be financial burdens or ask family to make difficult decisions about our end-of-life care.

Hospice at home can be difficult. Caregivers must remember to take care of themselves and maintain connections with family, friends and the hospice team. It is these connections that will be a lifeline in a time of need.

Daughter talking with mom about hospice.

If you are the primary caregiver for a loved one considering hospice, this article helps you understand what to expect, practical tips, and strategies to manage caregiving at home.

The home hospice plan of care

The home hospice plan of care

The plan of care outlines hospice services and schedules. Developing the plan with your hospice provider gives you the opportunity to ask questions and share what's most important to your family.

The hospice team arranges for delivery of medical equipment and medications. They work with you on a schedule for visits from nurses, therapists, chaplains, social workers and volunteers. The schedule adapts to your needs.

Frequent check-ins ensure the team provides for your most pressing concerns. Whether you need practical advice about daily care or intervention for a medical emergency, hospice nurses are available 24 hours a day. 

Responsibilities of the family caregiver

  • Help patients with the activities of daily living, including bathing, dressing, feeding and going to the bathroom.
  • Ensure your loved one has their prescriptions and that all medicines are given at the correct dose and time. Hospice nurses and aides can teach proper techniques.
  • Provide basic medical care, including changing dressing, taking temperatures and blood pressure readings.
  • Understand how to use medical equipment, which may include oxygen machines, wheelchairs, lifts and hospital beds.
  • Notify hospice personnel of changes in the patient's condition.

Common questions from caregivers

How Difficult is Hospice at Home?

Home hospice comes with challenges. With help, it is possible, with many families sharing that it is an affirming and profound experience. Medicare surveys show that almost 80 percent of caregivers say their hospice experience was positive.

Thankfully, you are not alone as a caregiver. The hospice team supports you at every step of the journey. If you need a temporary break, respite care is a Medicare benefit covering patient transport and up to five consecutive days of inpatient care at a nursing facility or hospital.

Inpatient Care

There may be a time when care becomes too complex for family members. General inpatient care is appropriate when a caregiver is unable to manage care due to pain or other symptoms. The hospice schedules transportation to a facility with 24/7 nursing care. Hospice staff continue to support patients and families during inpatient care.

Do Medicare benefits cover full-time, in-home care?

Medicare benefits do not pay for around-the-clock or 40-hour workday care. A family member usually steps in to be the primary caregiver at home. The hospice team works caregivers to schedule visits. Medicare covers hospice in a nursing home (JPG, 95.2KB), but not room and board costs.

How much does hospice cost?

Hospice is a fully funded Medicare/Medicaid benefit. Most families choosing home hospice have no out-of-pocket expenses related to care for a terminal illness or support services. The U.S. Department of Veteran’s Affairs also covers hospice care for veterans.

Does a hospice referral mean medical treatments end?

Hospice patients still receive medical treatments for their non-terminal conditions. Patients agree to transition from curative treatments for a terminal illness to comfort care, which focuses on improving quality of life.

Call us 24/7 at 833-380-9583 to learn about your options for in-home care. You may also browse a list of Compassus location near you to speak with a local hospice provider.