Appendix E_Materials_Interactive Worksheet

Appendix E: Materials - Interactive
worksheet/ Tear-off pad
{Cover Page}

CAMPAIGN NAME
WILL BE PLACED HERE

For Providers

Before getting started, here are some tips:
•

Talking about pediatric
palliative care.
As a health care provider, you are
uniquely positioned to discuss
options for palliative care with your
pediatric patients and their families.
This conversation can help educate
families about palliative care, ensure
clear communication between
provider and family, and build their
trust and confidence in you.

Initiate a conversation about palliative care with your pediatric patients and
their families as soon as possible.

• 
Continue discussions about palliative care throughout the course of your
patient’s illness.
•

Listen to the patients and their families to understand their unique needs.

•

 nsure your patients and their families understand that:
E
– Receiving palliative care does not mean that active medical treatments,
curative care, or life-prolonging care will stop.

•

 rovide clear, easy-to-understand information and materials about
P
palliative care.

Instructions on how to use the front of this pad.
You can use the front of this tear pad as an interactive discussion tool to
guide your conversations about pediatric palliative care. The following
steps correspond to each section on the front of the pad and can help you
start and manage the conversation.
1. S
 tart the discussion by providing background on palliative care.
Patients and their families are often unfamiliar with the term and what
services are included.
2. E
 nsure your patients and their families understand that palliative care
should be initiated as soon as possible and continued throughout the
course of the illness. Explain which palliative care services are available
in your care setting, check the boxes of services appropriate for the
patient, and use the space provided below each box to make specific
recommendations on appropriate care.
3. P
 rovide information about the different members of a palliative care team
and use the space provided to recommend a team for the patient and his
or her family. If additional resources are available in your care setting or
community, fill in the Palliative care resources section.
Note: You can update this section with a sticker listing available resources.
4. It is important to convey to patients and their families that this is the
first of many conversations. Fill in the space provided with a date and
recurring time frame for when the patient’s care will be discussed.
Reiterate that palliative care provides support for patient and family during
this difficult time. Suggest that the patient and/or family use the space
provided for notes or questions for your next conversation.

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CAMPAIGN NAME
WILL BE PLACED HERE
Information
and Resources
Improving comfort and
quality of life.
Palliative (pal-lee-uh-tiv) care is
a central part of treatment for
children living with serious illnesses
or life-limiting conditions. It can
help prevent symptoms, provide
relief from much more than physical
discomfort, and enhance quality of
life for your child. Palliative care
is important regardless of your
child’s age or stage of illness,
and it provides an added layer
of support for your entire family.

Support for your child, you,
and your family during a
difficult time.
Palliative care provides support for
all aspects of your child’s illness:
• R
 elief from pain and other
symptoms of serious illness
• E
 motional, psychosocial, and
spiritual support services
 oordination of care with all of
• C
your child’s health care providers
 pen discussions about
• O
treatment options for your
child, including help in making
important care decisions and
advanced care planning

Support as soon as possible. Palliative care works together with
your child’s main treatment. It can be provided along with all other
medical treatments. It may start as soon as your child’s treatment
begins and can continue throughout the entire illness. Based on your
child’s needs, we recommend the following palliative care options for
___________________________________________________________________
[patient name]

Pain and symptom management:
___________________________________________________________________
___________________________________________________________________

Emotional, coping, or social support for your child
or other family members:
___________________________________________________________________
___________________________________________________________________

Spiritual or religious support:
___________________________________________________________________
___________________________________________________________________

Other:
___________________________________________________________________
___________________________________________________________________

Palliative Care Resources:
There are resources in this hospital and in your community that
may offer support to you and your family.
Resources include:
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
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Your palliative care team. Palliative
care is a partnership between the
child, the family, and a team of
specialists. These team members
spend as much time as it takes to
help you fully understand your child’s
and family’s care options. They
will work with you and your child to
develop a care plan for your unique
situation. They will help your child
make a smooth transition between
the hospital and outpatient care, or
care received at home. A palliative
care team may include:

Recommended members of your palliative care team:

• Doctors
• Nurses

___________________________________________________________________
[insert date]

• Social workers

And reassess your child’s and family’s needs every:

• Pharmacists

____________________________________________________________weeks.
[insert number]

• Chaplains

___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
Ongoing care when you need it. This is the first of many
conversations you will have about palliative care. It is important
to continue talking about options for care throughout the course of
your child’s illness to address his or her changing needs.
Let’s plan to talk about your child’s care again on:

• Counselors
• Nutritionists and others

Your notes about palliative care
Use this space to take notes and to track your child’s progress.
You may also want to write down questions to ask the palliative
care team.

[CAMPAIGN LOGO]

Notes/Questions:
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
For more information about palliative care, please visit
[CAMPAIGN URL].

National Institute of Nursing Research
National Institutes of Health
31 Center Drive, Room 5B10
Bethesda, Maryland 20892-2178
www.ninr.nih.gov
NIH publication [NUMBER]
Printed [MONTH, YEAR]

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{Cardboard Backing}

CAMPAIGN NAME
WILL BE PLACED HERE

For Providers

1. What is palliative care and when is it provided?

Frequently asked
questions and
suggested responses.

• P
 alliative care is an important part of treatment for your child
and can prevent or manage the symptoms associated with your
child’s illness as well as the side-effects of many primary medical
treatments. It can provide relief from much more than physical
discomfort, and enhance quality of life.
• It is appropriate across a range of serious illnesses
or conditions and it may integrate pain and symptom
management with psychosocial support such as spiritual
support, counseling, and social services.
• P
 alliative care is available at any time during an illness, and
its availability does not depend upon whether or not your
child’s condition can be cured.
2. Does the patient have to be in hospice care to receive
palliative care?
• Y
 our child does not need to be in hospice care to receive
palliative care. Your child can receive palliative care in a
hospital-based, outpatient, or home setting.
3. H
 ow can palliative care help my child and our family?
• T
 he purpose of palliative care is to address distressing
symptoms that the patient may experience such as pain,
breathing difficulties, nausea, or others.

[CAMPAIGN LOGO]

• P
 alliative care extends beyond patient care and includes
advanced planning and coordinated care as well as support
for family members, including your child’s siblings.
• I can help you work with your child’s other care providers to
integrate palliative care services into the primary treatment plan.
I can also help coordinate the delivery of your child’s care.
4. Who provides palliative care?

NIH publication [NUMBER]
Printed [MONTH, YEAR]
NIH...Turning Discovery Into Health

• P
 alliative care is delivered by a team of professionals based on
your child’s needs. The palliative care team combines pain and
symptom control and other support into every part of treatment.
Team members will spend as much time as needed with your
child and you to fully understand your child’s needs.
For more resources about palliative care, visit [CAMPAIGN URL].
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