Attachment 4_Tear-off Pad

Attachment 4_Tear-off Pad.pdf

Palliative Care: Conversations Matter Evaluation (NINR)

Attachment 4_Tear-off Pad

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Attachment 4: EXAMPLE OF CAMPAIGN MATERIALS - TEAR-OFF PAD

For Providers
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.

Before getting started, here are some tips:
•	

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.	 Start the discussion by providing background on palliative care.

Patients and their families are often unfamiliar with the term and what
services are included.

2.	 Ensure 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.	 Provide 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 patients and family
members during this difficult time. Suggest that the patient and/or family
use the space provided for notes or questions for your next conversation.

Information
& Resources
for Families
Improving comfort and
quality of life.
Palliative (pal-lee-uh-tiv) care is a
key part of treatment for children
living with serious illnesses or
life-limiting conditions. It can help
prevent symptoms, give relief from
much more than physical pain,
and enhance quality of life for your
child. Palliative care is important
no matter your child’s age or stage
of illness. It gives an added layer of
support for your whole family.

Support for your child, you,
and your family during a
difficult time.
Palliative care gives support for all
aspects of your child’s illness:
•	Relief from pain and other
symptoms of serious illness
•	Emotional, psychosocial, and
spiritual support services

Support as soon as possible. Palliative care works along 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 during the whole illness. Based on your
child’s needs, we recommend the palliative care options below for
___________________________________________________________________
[patient name]

Pain and symptom management:
___________________________________________________________________
___________________________________________________________________

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

Spiritual or religious support:
___________________________________________________________________
___________________________________________________________________

Other:
___________________________________________________________________
___________________________________________________________________

•	Coordination of care with
all of your child’s health
care providers

Palliative care resources in your community:

•	Open discussions about
treatment choices for your
child, such as help in making
important care decisions and
advanced care planning

Resources include:
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________

There are resources in this hospital and in your community that
may offer support to you and your family.

Your palliative care team. Palliative
care is a partnership between the
child, the family, and a team of
specialists. These team members
help you fully understand your
child’s and family’s care choices.
They will work with you and your
child to make a care plan just
for you. They will help your child
make a smooth transition from the
hospital to outpatient care, or care
received at home.

Recommended members of your palliative care team:
Name: ____________________________________________________________
Phone: ______________________ Title:_______________________________
Name: ____________________________________________________________
Phone: ______________________ Title:_______________________________
Name: ____________________________________________________________
Phone: ______________________ Title:_______________________________

•	Doctors

Ongoing care when you need it. This is the first of many
conversations you will have about palliative care. It is important to
keep talking about options for care throughout the course of your
child’s illness to meet his or her changing needs.

•	Nurses

Let’s plan to talk about your child’s care again on:

•	 Social workers
•	Pharmacists

___________________________________________________________________
[insert date]

•	Chaplains

And reassess your child’s and family’s needs every:_________ weeks.

A palliative care team may include:

•	Counselors
•	 Nutritionists and others

Additional Recommendations:
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________

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.

Notes/Questions:

National Institute of Nursing Research
National Institutes of Health
www.ninr.nih.gov
Printed [MONTH, YEAR]
NIH...Turning Discovery Into Health®

___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
For more information about palliative care, please visit
www.ninr.nih.gov/conversationsmatter.

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.	How 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.
•	 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?

National Institute of Nursing Research
National Institutes of Health
31 Center Drive, Room 5B10
Bethesda, Maryland 20892-2178
www.ninr.nih.gov
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 control of symptoms,
including pain, 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 information about palliative care, please visit
www.ninr.nih.gov/conversationsmatter.


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