Palliative Care: What Parents and Caregivers Need to Know

Palliative (PAL-ee-uh-tiv) care is a medical specialty that is focused on treating symptoms such as pain or stress that can often go along with a serious illness. Where other medical specialties focus on curing or treating the underlying illness, palliative care is meant to ease discomfort and manage symptoms caused by a serious illness.

A common misconception is that palliative care is end of life care, but it is not—hospice care is end of life care. Palliative care is a type of care that provides an extra layer of support for patients and families going through a serious illness. The focus is on improving quality of life by treating symptoms (such as pain), helping with coping and easing stress, and supporting complex medical decision-making.

Historically, palliative care has focused on symptom relief for people who have cancer. However, many children and adults with genetic, neurological, or other conditions affecting their life expectancy and/or their quality of life can also benefit from palliative medicine. 

The main difference between palliative care and hospice care is scope: any patient with a serious illness can benefit from palliative care, while hospice care is specifically aimed at patients who are approaching the end of life.

Both palliative and hospice care focus on the patient’s quality of life and comfort. While palliative care is often used alongside other specialties that are attempting to cure or manage a serious illness, hospice care is for those who have a much shorter life expectancy and prefer to receive most of their care at home, aided by a multidisciplinary team with expertise in pain and symptom management. 

Palliative care at Gillette Children’s can help patients and their families improve their quality of life as well as provide support for medical decision-making. Our dedicated team of neuropalliative experts works with your family to identify treatment goals and manage complex pain and other symptoms that may be causing you or your child distress. By working across all specialties, Gillette provides seamless, team-based and family-focused care for our patients ages 0-40.

Working closely with social work, child and family services, therapeutic recreation, psychology, nutrition, and chaplaincy services, the experts at Gillette consider you or your child’s physical, social, mental, and spiritual health to design a care plan that is tailored to their unique needs and wants. Palliative care strategies are tailored to the individual patient and include but are not limited to medication therapy, holistic health and wellness, rehabilitation therapies, mental health therapy, and ways you can help manage you or your child’s symptoms at home. 

Your child could benefit from a palliative care appointment if they have a potentially life-limiting condition that places them at risk for serious complications and they:

• Have been hospitalized for a long period of time, or several times over the last six months.
• Show signs of declining health, like changes in their personality, energy level, or appetite.
• Experience chronic pain or other distressing symptoms that limit function and impair their quality of life.
• Would benefit from guidance related to difficult medical decision-making (e.g., a proposed surgery).
• Need assistance with advance care planning (ACP), a process that involves making informed decisions about future healthcare. 

When your child is sick, even making basic medical care decisions can feel overwhelming. The team at Gillette is devoted to supporting your family through this process, providing expert opinions and guidance at a time when you may need them most.

Our goal is to help relieve some of the stress that often comes along with watching your child face an illness. By focusing on your child’s quality of life, palliative care works to reduce your child’s distress and pain—which in turn can help ease the burden of stress on the family.