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When treatment is no longer working and cure is unlikely, goals of care change.
Planning for the transition to end of life care is important to manage symptoms, make informed decisions, and focus on quality of life for patient and family.
Comfort is critical at every stage of pediatric cancer care. Common symptoms during end of life include:
Palliative care can play an important role in managing pain and symptoms during end of life care. Each situation is different, but a variety of approaches may be used to keep the child comfortable. Doctors may recommend medications, palliative treatments, or complementary therapies.
The palliative care team may expand and include health professionals who can assist both child and family. A multidisciplinary team may include specialists from psychology, child life, spiritual care, social work, and other areas to address specific needs during end of life care.
It is impossible to know the exact path the final stages of the cancer journey will take. However, planning ahead can reduce fear and uncertainty. It allows families time to make decisions that are consistent with their priorities and values. Palliative care specialists can prepare families for different scenarios. Honest and clear communication helps families to understand decisions and care choices, and the associated benefits and burdens.
During end-of-life care, medical procedures may be considered for two main reasons:
Medical interventions during end of life care may include:
A palliative care specialist can help families think through other important end-of-life decisions related to care. Families may wish to consult with their palliative care team to create an advance directive that outlines their wishes. Putting requests in writing can help communicate goals of care. Written orders include DNR and POST forms.
These plans may also be called Physician/Medical Orders for Life-Sustaining Treatment (POLST/ MOLST).
Read more about decisions during end of life care:
The palliative care team can assist families in exploring options and identifying preferences for how patients can have the fullest life possible during end of life care. Opportunities may include:
Allowing children and adolescents to express their wishes on end-of-life issues can be a great gift to patients and families during this phase of their journey. There are tools that help children communicate how they prefer to be comforted, supported, treated, and remembered.
Voicing My Choices allows older children to express thoughts about how their pain is treated, what comforts are important to them and how they would like people to deal with their own grief.
The Conversation Project Starter Kit is a tool that to help parents talk about end-of-life wishes with their seriously ill child. This guide includes questions for reflection, examples of conversation starters, quotes from families, and resources for additional information.
These resources may also provide a starting place for parents to discuss end-of-life topics with their children and help guide palliative care and provide direction for advance care planning.
Working with palliative care specialist during end-of-life care can have immediate and long-term benefits for families. Palliative care helps families
Reviewed: June 2018