A support service for patients with life-threatening illnesses and chronic disease…
…as well as their families and caregivers.
Palliative Care…
--Palliative care seeks to enhance quality of life.
-- Helps families pursue comfort-oriented goals concurrently with cure-directed therapy.
-- Manage a child’s pain and other symptoms so he or she is comfortable, but not asleep or unconscious.
-- Talk openly with family about a child’s prognosis and treatment side effects so families can make tough, but informed, decisions.
-- Optimize achievement of goals and potential for children on a complex medical journey.
Philosophy
The American Academy of Pediatrics (AAP) supports an integrated model of palliative care, in which components of palliative care are offered at diagnosis of a life-limiting disease and continued through the course of illness, whether the outcome ends in cure or death. The Pain and Palliative Care team supports this goal, in addition to providing palliative care to children with chronic disease and acute life-threatening events. Our team is dedicated to helping children live life to the fullest.
Palliative care is NOT exclusive.
It is offered concurrently with curative therapy.
When to call the Pain and Palliative Care team?
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Difficulty with pain control or other symptoms such as nausea/vomiting, dyspnea, pruritis, constipation, or medication side effects
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Patient was previously followed by Pain and Palliative Care team
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New diagnosis of life-limiting or life-threatening disease
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Patient/Family/Physician in conflict over goal setting
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Medical decision making discussions with patient/family
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Patient, family or physician uncertainty regarding prognosis
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Advanced Cancer
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Family with limited social supports
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Complex care coordination and/or home going needs
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For further referral information, please see:
www.capc.org/tools-for-palliative-care-programs/clinical-tools/consult-triggers/pediatric-palliative-care-referral-criteria.pdf
What do we do?
Pain management
Sometimes easing a child’s pain is straightforward. When pain is chronic, or from nerves (“neuropathic”), or resulting from treatment (such as chemotherapy), it can be more difficult to manage. For some, pain may come from a spiritual or emotional source rather than physical.
Care coordination
Streamlining care for children with chronic illness can be difficult. The needs of the patient and family are assessed and care is coordinated while keeping palliation as a central part of every treatment plan. An emphasis is placed on facilitating communication between providers and families to optimize decision-making and coping.
Alleviate symptoms
Constipation, breathlessness, and itching, can be very troubling. These symptoms, as well as others, may result from medications or disease processes.
Recognize needs
Each child has different needs. Some children and families need help understanding illness progression with possible outcomes. Other families want guidance with medical decisions and planning. At times, quiet, supportive listening is all that is needed.
Everyone involved
A child’s illness reaches beyond the child. Siblings, parents, extended family, friends, school, and others can be affected. Routines and ways of life may be changed. It is important to keep everyone involved.
The Pediatric Pain and Palliative Care Team sees patients
for in-patient consults, out-patient consult, and home visits (depending on patient situation)
Education
-Medical students and residents
-Presentations
Institutional
-Physician and department-specific needs
-Pain Policy Initiative
-Adult Palliative Care Team
-JCAHO
Outside HUMC
-NJ Palliative Care Coalition
- “New Jersey Pediatric Palliative Care”
-Hospice Organizations
Staff
Section Chief
Jamie Beversdorf, MD
Pain and Palliative Care APN
Jamie L. Boman, RN, APN
Glossary
Palliative care: Symptom management as well as addressing the psychological, social, or spiritual needs of children and their families. It can include, but is not limited to, end-of-life and bereavement.
Curative therapy: Treatment aimed at curing a disease.
Hospice: Medical and multi-disciplinary care for patients with 6 months or less to live, if the disease follows its expected course. Curative therapy is not performed at this time. Hospice aims to provide the best quality of life for the patient and support for family.
DNR/AND: DNR (Do Not Resuscitate) and AND (Allow Natural Death) are terms that describe allowing someone to die, without using shocks to restart a heart, putting a tube in the mouth to help someone breathe, or performing CPR. It does NOT mean “Do Nothing.” Patients are cared for, symptoms are managed, and medical therapy is given.