Skip to Main Content

Welcome to

Together is a new resource for anyone affected by pediatric cancer - patients and their parents, family members, and friends.

Learn More
Blog Community

Planning for End of Life Care

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.

A family sitting on a bench beside the river watching the sunset.

It is impossible to know the exact path the final stages of the cancer journey will take. Planning ahead can reduce fear and uncertainty.

Pain and symptom management

Comfort is critical at every stage of pediatric cancer care. Common symptoms during end of life include:

  • Increased fatigue and tiring easily
  • Emotional distress such as depression, anxiety, and irritability
  • Nausea and/or vomiting
  • Loss of appetite
  • Weight loss
  • Sleep problems
  • Changes in breathing, heart rate, or blood pressure
  • Decreased urine output
  • Constipation or diarrhea
  • Loss of bowel or bladder control
  • Fever
  • Seizures
  • Confusion or other changes in mental function

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.

Advance care planning

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:

  1. As a treatment to prolong life
  2. As a treatment to provide comfort

Medical interventions during end of life care may include:

  • Surgery or radiation therapy to treat symptoms caused by a tumor
  • Assisted breathing through supplemental oxygen or mechanical ventilation
  • Medically administered nutrition (tube feeding)
  • Intravenous fluids for hydration
  • Blood transfusions
  • Antibiotics to fight infection
  • Medications to prevent seizures
  • Chemotherapy that might prolong life

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.

  • “Do Not Resuscitate” (DNR) Order – A DNR order is a request to allow a natural death. The medical team will not perform CPR or other procedures if the child’s breathing or heart stops. Families may also specify “Do Not Intubate” (DNI) and/or “Allow Natural Death” (AND). The care team can explain each of these orders in detail.
  • “Physician/Medical Orders for Scope of Treatment” (POST/MOST) Form – A POST form is a written record of patient and family wishes for medical care. The form provides a clear outline for health professionals. It is not required, but it can give families control over care and reduce anxiety and uncertainty. POST forms should be reviewed whenever a patient’s condition changes, and families can change their preferences at any time. A POST form generally includes preferences for:
    • CPR
    • Medical interventions
    • Antibiotics
    • Artificial nutrition

These plans may also be called Physician/Medical Orders for Life-Sustaining Treatment (POLST/ MOLST).

Read more about decisions during end of life care:

Living the last days according to patient and family wishes

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:

  • Living out final days at home
  • Spending time with friends and loved ones
  • Fulfilling a wish or life goal
  • Creating special memories

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.

Importance of palliative care

Working with palliative care specialist during end-of-life care can have immediate and long-term benefits for families. Palliative care helps families

  • Navigate difficult conversations
  • Understand options and make informed decisions
  • Be emotionally present and create opportunities for memory making
  • Manage emotional and spiritual needs
  • Find resources to address medical, financial, and daily concerns

The Palliative Hub - Useful Downloads

Reviewed: June 2018