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Good Grief: The Pediatric Care Provider and Patient Death
Alexis Winnen, CCLSProgram CoordinatorRainbow Babies and Children’s HospitalRainbow Center for Pediatric EthicsCleveland, Ohio
Dena Mitchell, RN, BSNSenior Oncology NurseUniversity HospitalsCase Medical CenterIreland Cancer Center, PediatricsCleveland, Ohio
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Introduction:Experiencing Pediatric Patient Death
• Death denying culture
• An occupational hazard
• Unique to the healthcare provider
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Objectives
• Increase a sense of competency and mastery in caring for the dying patient and bereaved family
• Acknowledge the pediatric healthcare provider’s grief
• Introduce coping strategies
• Discuss opportunities for increasing peer support in the work environment
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First Death Experiences
“Looking Behind the Mask”
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Normal Caregiver Grief Reactions
HELPLESSNESS
FAILURE
GUILT
HURT
ANGER
SADNESS
POWERLESSNESS
DESPAIR
RELIEF
SELF CONTROL
DETACHMENT
NEED TO CRY
NEED TO PRAY
WITHDRAW
NEED TO SHARE
NEED TO ATTEND FUNERAL
ONGOING THOUGHTS
DREAMS
SLEEP DISTURBANCES
CAN’T COME TO WORK
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Types of Loss Unique to the Caregiver:
• Loss of a close relationship with a patient/family • Loss due to professional identification with pain of
family members• Loss of professional goals, expectations, self-image
and role• Loss related to personal system of beliefs and
assumptions about life• Losses that are unresolved from the past • Losses anticipated for the future • Loss related to personal mortality being challenged
Papadatou, D. (2000). Omega, 41(1), 59-77.
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Contributing Factors to the Grief Experience:
• Lack of support• Feelings of inadequacy• Fear of failure• Communication gaps• Denying the inevitable• Avoiding reality
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Case Illustration
“J”• What’s the plan of care?• Is everyone on the same page?• Am I in this alone?
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Cope:Derived from the old Frenchword, couper, meaning toslash or strike.To fight or contend (with) successfully or on equal terms.To deal with problems, troubles, etc.
Webster’s new world dictionary of the American language (2nd college ed.). (1980).
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Coping Strategies
• Face death and grief head on• Seek knowledge and apply it• Identify supportive measures in work environment• Briefing• Debriefing• Finding meaning• Separate work and personal life• Take care of yourself• Say goodbye
Hellsten, M.B., Hockenberry-Eaton, M., Lamb, D., Chordas, C., Kline, N. & Bottomley, S.J. (2000). Helping professionals care for dying children: Strategies that help. In Texas Children’s Cancer Center-Texas Children’s Hospital, Houston: End-of-Life Care for Children. Retrieved May 3, 2005 from: http://www.childendoflifecare.org/profess/profess20.html
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Enhancing a Supportive Work Environment:
• Offer a hand • Give positive feedback• Invite and seek informal debriefing• Respect personal limits and boundaries• Consider formal mentoring, debriefing
and education
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Paradigm Shift
Participation in life completing itselfrather than only seeing
the loss of a shortened life
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Case Illustration
“D”• Are we asking the right questions?• How can we work together as a team?• What are we hoping for?
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Reframing Hope
• To be together• To have peace• To have comfort• To have quality of life• To have opportunities for memory making• To have choices• To be treated with honesty• To maintain dignity• To feel supported
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Discussion
To Laugh often and much;To win the respect of intelligent people and the affection of children;
To earn the appreciation of honest critics;To appreciate beauty, to find the best in others;
To leave the world a bit better whether by a healthy child, a garden patch,or a redeemed social condition;
To know even one life has breathed easier because you have lived.This is to have succeeded.
- Ralph Waldo Emerson
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References
Hellsten, M.B., Hockenberry-Eaton, M., Lamb, D., Chordas, C., Kline, N. & Bottomley, S.J. (2000). Helping professionals care for dying children: Strategies that help. In Texas Children’s Cancer Center-Texas Children’s Hospital, Houston: End-of-Life Care for Children. Retrieved May 3, 2005 from: http://www.childendoflifecare.org/profess/profess20.html
Papadatou, D., Papazoglou, I., Petraki, D. & Bellali, T. (1999). Mutual support among nurses who provide care to dying children. Illness, Crisis & Loss, 7(1), 37-48.
Papadatou, D. (2000). A proposed model of health professional’s grieving process. Omega, 41(1), 59-77.
Rando, T.A. (1984). Grief, dying, and death: Clinical interventions for caregivers. Champaign, Illinois: Research Press Company.
Saunders, J.M., Valente, S.M. (1994). Nurses’ grief. Cancer Nursing, 17(4), 318-325.
Smith, R. (Ed.). (2000). A good death. BMJ, 320, 129-130.
Steinhauser, K.E., Clipp, E.C., McNeilly, M., Christakis, N.A., McIntyre, L.M. & Tulsky, J.A. (2000). In search of a good death: Observations of patients, families and providers. Annals of Internal Medicine, 132(10), 825-832.
Webster’s new world dictionary of the American language (2nd college ed.). (1980). Simon and Schuster.
Woods, M. (2001). Balancing rights and duties in ‘life and death’ decision making involving children: A role for nurses? Nursing Ethics, 8(5), 397-408.
