Planning for End-of-Life Care

Common symptoms during end of life include:

• Pain
• Fatigue
• Depression, anxiety, and irritability
• Nausea and vomiting
• Loss of appetite and weight loss
• Sleep problems
• Shortness of breath
• Confusion or other mental changes

Medical interventions may include:

• Surgery or radiation therapy to treat symptoms caused by a tumor
• Chemotherapy that might prolong life
• Medicines
• Integrative therapies such as relaxation techniques or essential oils
• Assisted breathing
• Feeding through a tube
• Intravenous (IV) fluids
• Blood transfusions

Palliative care and quality of life

A palliative care team can help you and your family focus on the quality of your life. Palliative care helps people with serious illnesses.

The palliative care team may include specialists from psychology, child life, spiritual care, social work, and other areas. Working with palliative care specialists helps families:

• Have hard conversations
• Understand options
• Create opportunities for memory making
• Manage emotional and spiritual needs
• Find resources for medical, financial, and daily concerns

Advance care planning

Advance care planning allows patients and caregivers to state their values and desires related to medical care at the end of life.  

Palliative care specialists can prepare you for different situations that could happen. They can help you understand choices. 

You may wish to talk with the palliative care team to create an advance directive. An advance directive is a written statement of how someone wants medical care provided if they: 

• Cannot make decisions for themselves 
• Do not wish to make decisions for themselves
• Want to make important decisions before there is a crisis

Putting requests in writing can help communicate goals of care. Written orders may be referred to as a DNR or a POST form. Some providers use both terms. They are both orders that record wishes for care.  

Comfort care is still provided, including pain medicines. This is important to note because some families avoid placing orders for fear that their child will suffer. 

• “Do Not Resuscitate” (DNR) Order: A DNR order is a request to allow a natural death. The medical team will not perform cardiopulmonary resuscitation (CPR) or other procedures if the child’s breathing or heart stops. Families may also specify “Do Not Intubate” (DNI). The care team can explain each of these orders. 
• “Physician/Medical Orders for Scope of Treatment” (POST) Form: A POST form is a written record of patient and family wishes for medical care. It is not required. But it can give families control over care. POST forms should be reviewed whenever a patient’s condition changes. Families can change it at any time. A POST form includes preferences for: 
  
  • CPR 
  • Medical interventions 
  • Antibiotics 
  • Nutrition support

These advance care plans may also be called Physician/Medical Orders for Life-Sustaining Treatment (POLST/ MOLST). These orders are especially important if the patient is getting care at home.  

In the hospital, orders are in the patient’s electronic medical record (EMR). When the patient is at home, it is important to have the advance care document there for outside medical providers such as emergency medical services (EMS) or hospice.  

Patient and family wishes for last days

The palliative care team can help families decide how patients can have the fullest life possible during end-of-life care. This may include:

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

Tools to help include:

• Voicing My Choices is a planning guide that allows older children to express thoughts about how their pain is treated, what comforts are important, and how they would like their loved ones to remember them. Ask your care team if they can give you a copy.
• The Conversation Project Starter Kit  helps parents talk about end-of-life wishes with their child. This guide has questions for reflection, conversation starters, quotes from families, and resources for more information.

Read more about decisions during end-of-life care:

Questions to ask your care team about end-of-life care

• What decisions do I need to make?
• How can the palliative care team help?
• How does the palliative care team work with my child’s doctor?
• Should I involve my child in decisions? What is the best way to do that?
• How do I explain what is happening to my other children?

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