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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.
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:
As the cancer journey continues, the way that these are addressed can look very different. However, palliative care conversations should regularly revisit these aims.
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.
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:
Reviewed: June 2018