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Children's Palliative Care Coalition
Education

 What is pediatric palliative care?

  "Pediatric palliative care seeks to relieve symptoms associated with a serious medical condition or its treatment and to enhance the quality of life for children and their families, addressing their unique psychological, social and spiritual needs."
Source: The Institute of Medicine (IOM)3

Palliative care should include curative treatment!
Particularly in the case of children, palliative care should always include curative treatment when appropriate (
"Concurrent Care").

Palliative care is about enabling the patient to live as fully as possible,
Palliative treatment provides relief from the symptoms and stress of a serious illness and has the objective of improving quality of life for both the patient and the family. It is appropriate both at any stage in a serious illness and also to mitigate the life-limiting impact of a chronic disability. It includes the management of curative treatment. Pediatric palliative care focuses on the health and happiness of the child.
End-of-life Care:
With extreme diagnoses, palliative care may be the primary care rather than a supplementary treatment. Such cases require specialized expert care to ensure not only the comfort and wellbeing of the patient but also that the best possible quality of life is maintained. When such expert care is not immediately available, Guidelines may help an attending physician, or even a non-professional caregiver.

(*Concurrent Care: The tradition of hospice is for the payers (e.g. insurers) not to provide curative treatment after the patient opted for palliative care. With children in particular not to provide curative care is diminished care. It is also is a major deterrent for any parent in considering palliative care for their child.)

State benefits
The dependence of a high proportion of child patients upon Medicaid distinguishes pediatric palliative care from adult. One reason is that Medicaid often provides wider cover than tradititional insurance, which has been an incentive for many states to pursue Medicaid Expansion legislation or Medicaid waivers to widen eligibility for children.
Many families benefit from the Healthy Michigan Plan, and  state services, like
the Children's Waiver Program.
Michigan Children's Special Healthcare Services plays a vital role in ensuring reimbursement that might not normally be available to caregivers.

"Pal Care"
The bonds between palliative care providers and their patients often become very strong,and some suggest a better term to describe the medical approach to this treatment is "Pal Care"

Pallaitive Care

Why Education?

Palliative care for children, being rare, requires caregivers to explain more.
Expanding public understanding and professional knowledge is a major purpose of the Coalition.
This means clarifying the meaning and nature of the term itself.
It is also necessary to keep families and caregivers aware of services available within the state of Michigan,
 and up to date with advances nationally and internationally.

Pediatric Palliative Care  - What's it all about?
The need for pediatric palliative care is worldwide. The video looks at issues from an international perspective:

 

More links on Pediatric Palliative Care:

Children Benefit From Palliative Medicine: NHPCO Report

 

End-of-Live Care Guidelines


Palliative Care -- Conversations Matter (National Institute of Nursing


Advanced Illness Care
: This report on person-centered care for advanced illness has relevant aspects.

"What is pediatric palliative care?"
This article provides a good definition of the term.

 

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