Patricia Maani Fogelman, DNP - Pediatric · PDF file 2013. 6. 19. · Loss, Grief,...
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ABC’s of Palliative Medicine: Interventions for the Child with Advanced or Terminal Illness
Patricia Maani Fogelman, DNP
Ruby Weller, CRNP
Geisinger Health System
• Define Palliative Medicine and identify two patient care benefits it offers to healthcare today.
• Identify appropriate timing for referral to palliative medicine consultation
• Describe two palliative medicine interventions for the pediatric patient with advanced illness
• Verbalize key phrases to discussing end-of-life care compassionately with patients/families
• Recognize the key elements of a constructive, patient- centered family meeting
• List three pharmacologic interventions to relieve distress at the end of life
Pediatric Palliative Medicine
America is a death-denying society
Affects child, family, healthcare providers, and community
Grief is an individual process
Davies & Orloff, 2010
Palliative Medicine: Care Patients Want
U.S. News and World Reports
• Vigorous treatment of their pain and symptoms
• Relief from worry, anxiety, and depression
• Communication about their care over time.
• Coordinated care throughout the multiple-year course of an illness
• Support for family caregivers
• Practical support
• A sense of safety in the health care system
• In 2010, 45,000 children died in the US • About ½ of these deaths are infants and
neonates • 25,000 are living with a serious illness
• Nearly 17 million adults are caring for a seriously ill child.
� Little experience with death
- Exaggerated sense of dying process
� No “typical” death
Kuhlthau K, Kahn R, Hill KS, Gnanasekaran S, Ettner SL. Matern Child health J 2010; 14(2): 155-63
NICU Total cases Deaths Cases LOS Deaths LOS
597 14 17.34 11.57
PEDS Total cases Deaths Cases LOS Deaths LOS
3901 20 3.36 14.26
Pediatric Palliative Medicine
• Children are living longer with complex chronic medical conditions.
• Multiple acute and chronic health crises create significant challenges for the child and family.
• Symptom management for these children presents a unique challenge to health care providers
• Interdisciplinary family-centered care is an integral part of the symptom management for a chronically or terminally ill child
Child/Family Expectations of Health Care Provider
• Be honest
• Elicit values and goals
• Help explore realistic options
• Team communication/consistency
• Take time to listen Hinds & Kelly, 2010
WHO Definition of Palliative Care for Children
• Active total care of the child’s body, mind and spirit, and also involves giving support to the family • Begins when the illness is diagnosed, and continues regardless
of whether or not a child receives treatment directed at the disease
• Health providers must evaluate and alleviate a child’s physical, psychological , and social distress
• Requires a broad multidisciplinary approach that includes the family and makes use of community resources
• Can be provided in tertiary care facilities, in community health centers and even in children’s homes
Family Centered Care
Family shapes types of interventions
– Illness experience – QOL and sources of suffering – Goals of care
• Curative/restorative • Life prolongation • Comfort
– Relatively young children with an advanced illness can (depending on the circumstances) express their values/goals/preferences and participate in decisions
– Work toward keeping bereaved families intact and functional during illness and after child’s death
The Artful Conversation
Recognize how uncertain this time is for families, and how frightening it can be.
Reaffirm your commitment to them.
Respond to phone calls and questions.
– Patients and families believe that a demonstrated willingness to stay with them through crisis and challenging events is a sign of caring and commitment from their medical providers.
Health Care Professionals: Communication Barriers
• Feeling “like a failure”
• Fear of expressing emotions
• Spiritual concerns
• Fear of own mortality
• Lack of education
• Ethical issues/concerns Boyd et al., 2011; Dahlin, 2010
• Warning shot first - “I’m afraid I have some
• Is this a good time for this discussion?
• What does patient know?
• What does patient want to know?
• Recognize that patients often do not hear or retain
much of what is said
• Encourage patient to share verbalization of message
• Summarize, document and follow-up
• Summarize ‘big picture’ in a few sentences
• Avoid jargon and organ by organ review
• Avoid euphemisms and use ‘dying’ if appropriate
• Answer questions
• Respond to emotional reactions
• Prepare for common reactions • Acceptance • Conflict/denial • Grief/despair
• Respond empathically
Delivering very bad news
I wish I had better news to give you.
Responding to unrealistic hopes
from a patient or family
I wish that were possible. It sounds like
all of us would be a lot happier if that
Responding to demands for
aggressive treatment when
prognosis is very poor
It must be very hard to come to the
intensive care unit every day and see so
little change. I wish medicine had the
power to turn things around.
Responding to expressions of loss,
grief, and hopelessness
It sounds like a terrible loss for you. I
wish it hadn’t turned out this way.
Quill et al Quill et al Ann Int Med 2001Ann Int Med 2001
Family Factors Influencing Communication
– Anxiety – Loss – Guilt/shame/blame – Plan of care for
Malone & Price, 2012
Cultural Factors Influencing Communication
Community – Religion – Spirituality – Food
– Economic situation – Health beliefs regarding
death, grief, pain
– Importance of rituals
Self-identification �Birthplace �Ethnic identity �Availability of support systems �Decision-making �Language and communication
Mazanec & Panke, 2010
Knowledge and attitudes
Cross-cultural communication/ cultural assessment
Spirituality and healing Kagawa-Singer, 2011; Mazanec & Panke, 2010
Components of Cultural Assessment
Nurse and Interdisciplinary Team
– Self assessment – Cultural beliefs of co-
– Training in cultural competency
Use of interpreters
Quality of Life Considerations
• Education • Grief and family
counseling • Peer support • Music therapy • Spiritual support • Respite care • Maintain role of child’s
previous medical caregivers
• Integration entire support system for patient and family
UNCLEAR/DISTRESSFUL HELPFUL It’s time to pull back. Let’s think about/discuss
discontinuing treatments which are not providing benefit.
There is nothing more we can do. We may consider changing the goals of care. Let’s review the goals of care to see if any of them have changed.
A miracle may turn things around. In my experience, I have not seen a child in this situation survive.
HELPFUL PHRASES AVOID
May I just sit here with you? It was a blessing…
Is there anyone I can call for you? You have other children to think about.
What might be helpful to you at this time?
I know how you feel.
Would you like me to talk with your other family members, or be there with you when you talk with them?
This will make you a better/stronger person.
Listen With Parents’ Ears
WHAT HCP SAYS WHAT PARENT HEARS
His creatinine is better. He will get well.
She is stable today. She is getting better.
We have an experimental treatment.
This new therapy will cure my child.
Do you want us to do CPR? You think CPR will help.
Do you want us to “do everything” for your child?
Doing everything means you think my child will survive and get well.
Helpful Tips for Talking with Children
• Child Life Specialist
• Appropriate language for developmental age
• Begin with non-threatening topic
• Listen actively/observe non-verbals
• Ask child what he/she knows
• Give valid choices
• Respect opinions
• Allow time to plan
Loss, Grief, Mourning, Bereavement
Loss is absence of a possess