What Caregivers Need to Know about Hospice Care at Home

Hospice care in the familiar surroundings of home can be a meaningful gift for a loved one with a serious illness.

A study by the Henry J. Kaiser Family Foundation found that most of us would prefer to die at home. The study also revealed that most of us don’t want to be a financial burden or ask family to make difficult decisions about our end-of-life care.

Hospice empowers patients and caregivers to both reach important end-of-life goals. With medical, emotional, social and spiritual support from the hospice team, patients have the opportunity to live at home and caregivers receive the support they need.

Daughter talking with mom

If you are the primary caregiver for a loved one considering hospice, this article will give you an idea of what to expect and answer some of your questions about hospice care at home.

The first step is the plan of care

The first step is the plan of care

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

The hospice team can arrange for delivery of medical equipment and medications. They work with you on a personalized schedule for visits from nurses, therapists, chaplains, social workers and volunteers.

Frequent communication ensures the team will adapt to your changing needs. 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 hospice 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, but it is a commitment many family caregivers choose as a gift of peace for their loved ones. Medicare surveys show that almost 80 percent of caregivers say their hospice experience was positive.

There will be good day and challenges. Thankfully, you are not alone. 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 become too complex for caregivers. 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 contracted facility with 24/7 nursing care. Hospice staff continue to support the patient and their families.

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 the hospice patient. The hospice team works with the caregiver to schedule visits.

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 non-terminal conditions. Patients agree to transition from curative treatments for their terminal illness to comfort care, which focuses on improving quality of life with the time that’s left. They can continue medical treatments for other, non-terminal, conditions.

If you'd like to talk about hospice care, call our resource center during business hours at 931-486-8607. Your may also browse a list of Compassus location near you to speak with a local hospice provider.