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Communicating with Your Child’s Palliative Care Team

Palliative care offers quality of life care and support for the entire family during pediatric cancer. Palliative care specialists assist with managing pain and side effects to promote comfort during illness and treatment. They also help families understand information and navigate complex medical decisions.

Clear, open, and ongoing communication builds trust and helps reduce uncertainty. This enables the patient, family, and care team to work together for a common purpose: to make each day the best it can possibly be.

Adolescent pediatric cancer patient walks in a hallway with a physician

Forming a good relationship with the palliative care team is important as it allows for open discussion of questions that span controlling symptoms to managing fears and uncertainty.

Starting the Conversation

Palliative care services are generally offered only to patients with a serious illness. Most families probably haven’t interacted with a palliative care specialist before their child’s diagnosis. Usually, families are first introduced to their palliative care team at the hospital or clinic. Follow-up consultations may take place beyond the clinical setting such as by phone or home visit. Families can also ask their doctors for a palliative care referral. Early palliative care is important to establish quality of life as a priority at the start of the pediatric cancer journey.

Palliative care meets families where they are. Early conversations should accomplish several aims:

  • Establish goals of treatment 
  • Clarify expectations
  • Identify current needs
  • Understand family values and priorities

As the cancer journey continues, the way that these are addressed can look very different. However, palliative care conversations should regularly revisit these aims.

Talking to Children About Quality of Life

Children will have different needs, and needs can change over time. Needs might include getting rid of the nagging itch of a rash, finding ways to spend more time with friends, managing chronic pain, or fulfilling a wish when cure is not possible. Quality of life care gives children more power over their illness and control over the way they are able to live their daily lives. The palliative care team can help by addressing the concerns directly or by advocating for the child with other members of the care team.

Children should be encouraged to talk about physical, emotional, and spiritual needs. The goals of palliative care are to reduce suffering, keep patients as comfortable as possible, and promote quality of life. Some children may think that pain and side effects are just part of treatment and that nothing can be done to help. Other children may be embarrassed to share the details of their concerns. Others may hold back to protect concerned family members.

Family caregivers play a key role in relaying patient concerns to the palliative care team. Children may not feel comfortable sharing their feelings and experiences with strangers. Families can keep a record of the child’s descriptions of side effects and other concerns and share these notes with the palliative care team. If communication between parent and child is difficult at any point, the palliative care provider can provide support to help open dialogue.

Improving Communication between Family Caregivers and the Palliative Care Team

Parents and other family members face complex needs and emotions during the cancer journey. Coordinating patient care with other family demands is overwhelming for caregivers. The palliative care team can be an important resource for families as they navigate the health care system, make care plans, and manage daily concerns.

The palliative care team spends time communicating closely with the family and other providers involved in the child’s care. They can help parents weigh the pros and cons of complex decisions and help ensure that decisions are in keeping with the family’s values and beliefs.

A good relationship with the palliative care team enables families to ask important questions. In pediatric cancer, a family’s questions might include:

  • We don’t know if we are making the right decisions for our child’s care and it weighs on us. How can you help?
  • Should we send our child to school during chemotherapy treatments?
  • Can you help us understand this information and how it affects treatment plans?
  • From your point of view, what concerns you most at this time?
  • If cure isn’t possible can you help us set end-of-life care goals and communicate those to the full care team? What should we tell our child?
  • I want to take my child home. What would that look like? How can you help?

Tips to help families communicate with their palliative care teams:

  • Discuss what quality of life means to your child and family. This may include things your child would like to be able to do, symptom control, pain relief, and ways to manage fears and uncertainty.
  • Share important family values and religious beliefs, and talk about how they might influence care and treatment decisions.
  • Tell your palliative care team how you prefer information discussed. Let the team know what is helpful or not helpful when receiving news. Discuss how to share information with your child in age-appropriate ways that meet his or her individual needs.
  • Talk about ways you and your child can share in decision making and be active in planning.
  • Let the team know if there is confusion or disagreement among family members regarding plans or treatment goals. This is common, and the palliative care team can help address concerns and clarify information.
  • Keep the team informed. Notify the team of changes such as new, improvement or worsening of symptoms, situations affecting the family outside of the hospital, or complementary and/or integrative therapies you might be interested in trying.
  • Be open to discussions of future planning. Transitions of care – even those that are positive – can be stressful for the entire family. Knowing what might be next and taking steps to prepare can reduce anxiety and increase sense of control.

Reviewed: June 2018