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Quality of Life

Palliative, End-of-Life, and Bereavement Care

“Are we at a point now where we’ve cured [Justin's] leukemia but we’ve created a situation where he has no quality of life?”
––Barb Heidt
Psychiatric clinical nurse specialist
Cincinnati Children’s Hospital

Palliative Care

The National Coalition for Cancer Survivorship (NCCS) describes palliative care and symptom management as “medical care that lessens pain or the side effects from treatment of a disease, such as cancer.” Palliative care helps to make patients more comfortable at every stage of an illness, and the NCCS recommends that pain and symptom management begin immediately when any child receives a diagnosis of a life-threatening condition.

The goals of palliative care are:

  • To minimize the pain from a life-threatening disease and make the person as comfortable as possible at all times. 
  • To provide care and support for the physical, emotional, developmental, spiritual and practical needs of a patient and family.

End-of-Life and Bereavement Care

One of the most wrenching experiences a family can have is deciding when to move from focusing on curative treatment to managing the end of their child’s life.

“I don’t think it’s humane to let a person lay there and slowly die,” said Justin’s sister, Jennifer. But Justin’s father had a different perspective: “We weren’t there just to make him comfortable,” Dale explained. “We were there to save our kid. It was a commitment to him––or, to do everything possible.”

End-of-life care focuses on the special needs a patient and family have when facing death. It is important to educate families about options for care and help them make informed decisions. This delicate kind of care may be provided by a hospice or special care program and requires sensitivity to age and culturally appropriate ways to talk with children about dying. 

Shared decision making ensures that healthcare providers fully inform and involve parents in decisions. Communication between families and care providers must be clear and culturally sensitive. The patient should be involved to whatever extent possible.

Bereavement care provides the family with a coordinated program involving professionals, volunteers, family and community support systems that meets their needs. In the days, months and years following a child’s death, physicians, nurses, social workers and hospice staff can stay meaningfully involved with the family. Abruptly ending contact with grieving families may feel like abandonment.

Palliative care and symptom management isn’t just for those who are dying. In addition to helping patients cope with pain, nausea and fatigue, palliative care and symptom management lets patients talk to others who can help them make decisions about their treatment and support them with their emotional, social, spiritual and practical needs. Support can also be provided to their families, helping them to understand and cope with the problems facing their loved ones.

Learn about the role of the caregiver »

Find out about survivorship challenges and get helpful tips »

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Dr. Swerdling, a Caucasian man with glasses, holds his hand to his furrowed brow

Justin, a Caucasian teenaged boy, in a hospital bed, wearing a baseball cap and sweatshirt joking around