#138: Hospice

April 9, 2025 | By Sam Masur

Audio

Summary:

Join us to learn from our expert guest Rebecca MacDonell-Yilmaz about the difference between palliative care and hospice, how to talk about death and dying, and what services home hospice can provide. Dr. MacDonell-Yilmaz is a pediatric palliative care attending and the director of a pediatric home hospice team.

Hospice Pearls

1. Patients with a terminal illness and expected prognosis <6 months are eligible for hospice.
2. Due to concurrent care, pediatric patients younger than 21 years can enroll in hospice and continue life-prolonging or disease-directed therapy.
3. Early involvement of palliative care in the disease course is important for establishing rapport and understanding goals of care.
4. Hospice care involves an interdisciplinary team including physicians, nurses, social workers, aids, and chaplains. It can take place at home, inpatient hospice units, and hospitals depending on the needs of a patient.
5. Providing anticipatory guidance about the dying process can help families better understand what to expect at the end of life. This may include increased fatigue, less time awake, increased confusion, decreased eating and drinking, and increased pain.

Hospice Notes 

What is Hospice and Who Qualifies?

Hospice falls under the umbrella of palliative care but with several distinct features. While palliative care is broader and provides supportive care and symptom management for any patient with a serious  illness, hospice is focused on comfort care for patients who are approaching the end of life. Eligibility for hospice includes a terminal illness with an expected prognosis of <6 months (although patients can continue to be on hospice for longer than this timeframe if they survive longer). Hospice referral may be appropriate for patients with: cancer, heart failure, chronic respiratory failure, genetic or metabolic abnormalities, neurologic diseases, and more.

Concurrent Care

With the enactment of the Affordable Care Act in 2010, concurrent care allows for patients younger than 21 years who meet hospice criteria to enroll in hospice without foregoing life-prolonging and disease-directed therapies. These changes mean that patients may continue to see their supscialtry providers and receive treatments such as chemotherapy and dialysis.

Disparities in Hospice Care

Underrepresented minorities have lower rates of palliative care and hospice utilization. This translates to higher rates of hospitalization and utilization of intensive care at the end of life (Jones 2024,  Turner 2025). 

Introducing Hospice & Goals of Care Conversations

Dr. MacDonnel-Yilmaz recommends early involvement of palliative care so that they can get to know patients and their families. Building these relationships can allow the team to have challenging conversations in the future to help families understand their options and how they fit into the medical reality. When introducing hospice for the first time, it can be helpful to fire a ‘warning shot’ and then try to understand what the family knows about hospice. For example: “We wanted to talk about an option that would allow your child to feel as good as possible for as long as possible but at home instead of at the hospital. That option is hospice. Have you heard about hospice before?”.

Questions to Think About:

• What is most important to you?
• What is your level of function?
• What are you able to do? What is important to you to be able to do?
• What are you hoping for?

Talking about Death with Children

• Try to normalize the conversation – “A lot of times when kids are going through this they have a lot of questions. What is on your mind?”
• Across developmental stages, children will shut down the conversation when they do not want to go further.. Do not push and give them as much space as they need.

Hospice Delivery Models

Settings

• Home: Most common for routine hospice care.
• Inpatient Hospice Units: Meant for cases when the symptom burden is too extreme to be addressed at home (ex. pain, agitation, nausea). Can administer IV/SQ medications. 
• Hospital: Some hospitals can care for patients with hospice involvement in cases when patients are too unstable to transport home or to an inpatient hospice unit (ex. unstable respiratory status).

Hospice Services

The hospice team can include physicians, nurses, social workers, child life, aides, and chaplains. It is important to make sure families understand that this is different from block nursing. Hospice nurses may come about once a week at the beginning and increase visit frequency as needed towards the end-of-life when care needs are greater. Most hospice agencies will have 24/7 phone lines that families can call with questions. One unique service that hospice provides is bereavement support which lasts for 13 months after a patient passes.

End-of-Life Counseling

Many families may not have experience with death and dying, so honest anticipatory guidance is critical. For example: “Based on xyz, it seems that your child’s body is shutting down and that they may die soon.” At the end of life, patients may be more tired, spend less time awake, have increased confusion, eat/drink less, and have increased pain. It can be distressing for families to understand the decreased oral intake, so Dr. MacDonelle-Yilmaz describes this change as “they are not dying because they are not eating and drinking, they are not eating and drinking because they are dying.”

References

Jennifer S. Linebarger, Victoria Johnson, Renee D. Boss, THE SECTION ON HOSPICE AND PALLIATIVE MEDICINE; Guidance for Pediatric End-of-Life Care. Pediatrics May 2022; 149 (5): e2022057011. 10.1542/peds.2022-057011

Goal

Listeners will understand the role of hospice in caring for patients with life-limiting illnesses and develop a framework for goals of care conversations.

Learning Objectives

After listening to this episode listeners will…  

1. Describe the eligibility criteria for hospice care including the provisions of concurrent care.
2. Be familiar with different hospice delivery models and the services that hospice can provide.
3. Feel more comfortable counseling patients and families on what to expect at the end of life.

Disclosures

Dr. MacDonell-Yilmaz reports no relevant financial disclosures. The Cribsiders report no relevant financial disclosures. 

Citation

Mao C, MacDonell-Yilmaz R, Masur S, Chiu C, Berk J. “138: Hospice.” The Cribsiders Pediatric Podcast. https:/www.thecribsiders.com/ April 9, 2025.