Patricia Maani Fogelman, DNP - Pediatric · PDF file 2013. 6. 19. · Loss, Grief,...

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Transcript of Patricia Maani Fogelman, DNP - Pediatric · PDF file 2013. 6. 19. · Loss, Grief,...

  • ABC’s of Palliative Medicine: Interventions for the Child with Advanced or Terminal Illness

    Patricia Maani Fogelman, DNP

    Ruby Weller, CRNP

    Geisinger Health System

    Danville, PA




    • 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

  • Background

    • 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


    FY 2011

    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

    | 8

    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

    • Non-abandonment

    • 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

    (WHO; 1998a)

    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

    bad news.”

    • 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

    | 16

    Clinical Scenario

    Delivering very bad news

    Sample Response

    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

    were so.

    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

    Cultural Sensitivity

    Knowledge and attitudes

    Non-judgmental approach

    Cross-cultural communication/ cultural assessment

    Interdisciplinary approach

    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

    Conversational style

    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.



    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


    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