Hospice consists of a medically directed, interdisciplinary team-managed program of services that focuses on the patient and their family. Hospice is the gold standard method of caring for people at the stage of a terminal illness when no further curative or life-prolonging therapy is available or wished to be pursued by a patient or family member. Hospice services can assist the family (as well as family caregivers) in making the patient as comfortable as possible by optimizing pain and symptom management and other forms of physical and/or spiritual suffering as needed in a home or home-like setting.
Hospice care for children is available with important differences from adult hospice care. To learn more, review the “Pediatric Concurrent Hospice Care” section on this page.
Is Hospice the Same as Supportive Palliative Care?
Hospice care focuses on the patient and families’ needs to ensure they are comfortable and treated with dignity near the end of the patient’s life. This is different than supportive palliative care which focuses on improving quality of life while still actively pursuing and engaging in treatments that can potentially be curative or life-prolonging.
Where Are Services Provided?
Hospice can offer pain relief, comfort and support to patients and their families. You can receive hospice services wherever you reside, but it most commonly happens at the home. Here is a list of some of the places where services are offered:
- Your home
- Nursing home
- Assisted-living center
- Intermediate care facility
- Group home
- Hospice in-patient facility
Who Is Part of My Hospice Care Team?
The hospice interdisciplinary team serves an important function in hospice care. This includes:
- Social worker
- Chaplain/spiritual leader
Other specialists as needed:
- Home health aide
- Certified child life specialist
- Trained volunteer
- Other specialists as needed
What Does A Hospice Care Team Do?
Among its major responsibilities, the interdisciplinary hospice team:
- Manages the patient’s pain and other non-pain symptoms.
- Provides emotional support.
- Provides needed medications, medical supplies and equipment.
- Coaches family caretakers on how to care for their loved ones.
- Provides family caregivers with needed time away from caregiver’s responsibilities (respite time).
- Delivers special services like speech and physical therapy when needed.
- Provides short-term inpatient care when pain or symptoms become too difficult to manage at home.
- Provides grief support to surviving loved ones and friends. Support can include conversations with the person and family members, teaching caregiving skills, prayer and phone calls to loved ones, including family members who live at a distance and companionship and help from volunteers.
Where Do I Go to Get These Services?
You can talk to your doctor or medical team to see if you or your loved one qualify for services and where to look for them. You can also find services at:
Rules and Regulations
How Do I Talk to My Family About My Decision?
Talking about end-of-life care often is a difficult conversation to have with family members and healthcare professionals.
The Institute for Healthcare Improvement provides a conversation starter kit (PDF) with a step-by-step guide on how to discuss your end-of-life choices with family and other loved ones. Some suggestions include:
- Writing down your thoughts and concerns before to the conversation.
- Practicing the conversation with a friend.
- Reasserting what matters to you at the end of life.
How Do I Pay for Hospice Care?
Hospice usually costs less than care in a nursing home or other institution. Hospice care is covered by most private health insurance carriers, Medicare, Medicaid and Veteran’s Affairs.
Medicare and Medicaid
If you have Medicare Part A (hospital insurance) or get Medicaid, and meet the conditions below, you can get hospice care if:
- Your hospice and regular doctor certify you’re terminally ill with a life expectancy of six months or less.
- You accept care for comfort and quality of life instead of care and treatment.
- You sign a statement choosing hospice care instead of other treatments for your terminal illness and related conditions.
- Concurrent care is available for people younger than 21 who are entitled to receive services available through the hospice benefit.
Hospice also provides services to caregivers and the family. As a caregiver for a parent, spouse or child, you might feel overwhelmed. Use these resources and suggestions to help you find emotional and physical task support to ease your stress as a caregiver.
- To learn more on advanced care planning, statistics and demographics, caregiving issues and strategies, and navigating legal issues read the Texas Caregiver Resource Guide (PDF).
To learn more on caregiver resources, visit the Caregiver Support webpage.
What About Hospice for Children?
Unlike adult hospice care, if your child gets Medicaid or is enrolled in the Children's Health Insurance Program, he or she can receive curative treatment and hospice services at the same time.
Pediatric Concurrent Hospice Care
Concurrent Care for Children Requirement of the Patient Protection and Affordable Care Act stipulates that a child who is eligible for and receives hospice care can concurrently receive all other services related to the treatment of the child’s condition. That means, in addition to potentially curative measures, a child’s care can also focus on enhancing the quality of life, minimizing suffering, optimizing function and providing opportunities for personal and spiritual growth.
To learn more, visit the following websites:
Having the "talk" with your child
Discussing end-of-life care with your child might seem like an impossible task but it can help prepare you and your family for this important discussion. As frightening and as heavy as this talk can be, there are known benefits in starting this conversation:
- Better coping mechanisms
- Less feelings of regret after having the conversation
- Stronger family communication skills
- Better understanding of what your child's wishes and needs are
The Conversation Project's Pediatric Starter Kit is a specific guide for parents wanting to have "the talk" with their ill child.