Topic:

WHEN A CHILD IS DYING

In This Session:

Story about Georgiana –  
Jennifer Phelan knows it’s possible to survive the unthinkable. She knows because her 7-year-old daughter Georgiana showed her how.

Team members caring for dying children frequently recognize the depth of their patients’ perception and awareness. Children often know when they are dying, even though others are reluctant to admit it. The death of a child and how they meet that end, however, can offer lessons about life and how to survive the unthinkable. 

About The Authors:

 

Bruce Himelstein, M.D., is Director of Palliative Care Services at the Children's Hospital of Wisconsin and Associate Professor in the Department of Pediatrics, Division of Hematology/Oncology at the Medical College of Wisconsin. He is co-investigator for a National Institute of Health grant to research parental beliefs in pediatric oncology and is a member of the Children's Oncology Task Force on End-of-Life Care, and the Bone Tumor Strategy Group. Dr. Himelstein is board certified in Pediatric Hematology and Oncology and by the American Board of Hospice and Palliative Medicine. 

 

Joanne Hilden, M.D., is the Chair of the Department of Pediatric Hematology/Oncology and Children's Oncology Group (COG) Responsible Investigator at the Children's Hospital at the Cleveland Clinic, Cleveland, Ohio. She founded and co-chairs the COG Task Force on End-of-Life Care. Dr. Hilden is a 2001 Soros Scholar in the Project on Death in America, and she is a certified trainer for the American Medical Association’s EPEC project to educate physicians about end-of-life care. Dr. Hilden is co-author, with Dr. Dan Tobin, of Shelter from the Storm: Caring for a Child with a Life-Threatening Condition.

Readings:

When a child is dying: Smallest patient offers biggest lesson

By Bruce Himelstein and Joanne Hilden
  
  Jennifer Phelan knows it’s possible to survive the unthinkable. She knows because her 7-year-old daughter showed her how.
Phelan’s education started in June of 1999, when her only child, Georgiana Antonopoulos, was diagnosed with lymphoma, a cancer of the blood. It ended last November, as she watched the little girl she called Georgie, surrounded by friends and family, die peacefully on the oncology ward in the Children’s Hospital of Philadelphia.
From the moment Georgiana was diagnosed, all Phelan could think about was losing her daughter. She didn’t talk about it, though, “because I was told it was normal to feel that way. … And I don’t know if I feared more her dying than I did a relapse. Sure enough, that came true.
“When she relapsed, I knew she wouldn’t make it. I didn’t want to feel that way, but I did. I didn’t tell anybody that, because I was afraid I would get yelled at, having to say something like that or feel something like that, so I did whatever (my doctor) wanted to do as far as the chemo(therapy).”
When the disease failed to respond, her primary care oncologist, Dr. Susan Rheingold, mentioned pediatric palliative care as an option.
What Phelan and her daughter would experience for the next two months is a quietly growing medical specialty that includes the smallest dying patients and their families in critical medical decisions. Teams of specialists work together to tend to the emotional, psychological, practical and spiritual needs of the patient and family — and that stay with the child as he or she moves through the health care system.

Child life specialists, psychologists, hospice professionals, social workers and spiritual counselors are called in to help the family say their goodbyes and prepare for what lies ahead.
In the last few months of her life, Georgiana was getting the kind of comprehensive palliative care not widely incorporated into the mainstream medical system for children with life-threatening illnesses — mainly because no one wants to deal with the fact that children die.
Advocates battle the perception that once a child is put under palliative care, doctors have given up, and a search for a cure stops. It’s a perception Jennifer Phelan faced squarely.
“I must stress how much I hated having to experience palliative care, as I know you know this all too well,” Phelan wrote in an e-mail to a team member after Georgiana died. “But the team was so comforting and so very compassionate. I think that is so important because I, as many other parents, was given the worst news imaginable.”
Or, as Steve Simms, the psychologist who worked with the family, put it, “Palliative care meant death and letting go. It meant that Jennifer was going to lose her daughter. It was the shattering of the myth that (the hospital) would find the cure. She dreaded the day you would darken her door.”
Once Georgiana was admitted, her hospital room immediately was transformed into a home-like setting. Her parents brought her teddy bear and “baby blanket,” which she had slept with every night since she was born. Georgiana hated the hospital-issued pajamas and socks, so she brought in her own “funky” footwear. Helping her get to sleep was a wind-up music box that played “Winnie the Pooh” and a bright green frog light.
The team treated and spoke to Georgiana daily, while conferring with her two sets of parents — Jennifer and her husband, and Georgiana’s father and his wife.
Unlike her parents, Georgiana quickly came to terms with her condition.
Team members caring for dying children frequently recognize the depth of their patients’ perception and awareness. Children often know when they are dying.
Phelan describes it simply: “I see the doctor. My mommy leaves the room. I come back in crying. She put it together. You can’t hide it from them. They’re going to figure it out on their own.”
As Georgiana got sicker, her mother recalls her asking, “Mom, am I going to die?”
“And I couldn’t answer her. I said, ‘I don’t know.’ I said, ‘That’s what we we're all afraid of because the medicine didn’t work.’ And she cried. And that was it — she stopped and went to do whatever she was doing.”
Afterward, Georgiana spoke openly with her primary nurse about how snowflakes and ladybugs could come together in heaven. She drew a smiling self-portrait of herself in heaven just a few days before her death.
“I also think it was important that Georgiana had (a child psychologist) talk to her and I think she helped her a whole lot,” said Phelan. “She knew why this woman was coming in to talk to her. After a few times she looked forward to it…. I guess because she thought that she was (just) going to talk to her and it wasn’t all talk — it was through play. I guess we found out a lot through that …”
It took encouragement from the team, however, before Phelan could speak openly with Georgiana about dying. “It was hard, but I’m glad I did it,” said Phelan. “Because she said she wasn’t scared, and she didn’t think about it. I asked her, and it was the way she said it that makes me feel a little better now. Her fear was leaving us. She had said to me, ‘If I die, I won’t see you anymore.’ And I told her she would, because she could watch us from heaven. And then she didn’t talk about it again.
“She said that every night when I go to bed she’ll come in my room and give me a kiss,” Phelan said.
As Georgiana’s condition worsened, her doctor and the palliative care team discussed the family’s options, including if, when and how to let her die naturally: Stopping the antibiotics. No more trips to the intensive care unit. Whether to set up hospice care at home. Saying no to life support systems. And planning for a funeral.
“When we couldn’t get Georgie into remission and the chance of a bone marrow transplant was practically nil, Jennifer investigated the options, but didn’t want to put Georgie through more,” Rheingold said. “Jennifer’s maturity was astounding from the first discussion of palliative care on. Whereas some families want to try anything to prolong their child’s life or continue to hope for a cure, not always thinking of the cost to the child and quality of life issues, the quality of Georgiana’s life was always first and foremost for Jennifer.”
“The hardest decision was stopping those antibiotics,” Phelan recalled. “But I knew I didn’t want Georgie on a tube (life support machine). I mean, I don’t think I could’ve seen her like that, because she wasn’t going to live anyway and she wouldn’t want to be that way. I think if I had done anything else it would have been for me, not her. That would’ve been selfish … I just wouldn’t do it.”
As death neared, managing Georgiana’s pain with morphine became everyone’s No. 1 priority.
“I remember at the funeral the priest saying — he was trying to be comforting but so far from knowing what it was really like those past months — that ‘now she wasn’t suffering anymore,’” recalled Rheingold. “It pissed me off, as Jennifer and we had tried so hard not to make her suffer.”
Phelan later wrote to the team: “I can still hear you telling me on Friday, the 24th of November, ‘She should pass within the next day or two ...’ Sure enough, you were exactly right. I hated the truth, the reality of this nightmare, and I still do, but I appreciated the fact that nobody sugar-coated it.”
Phelan remains in contact with Georgiana’s nurses, her primary physician, and the palliative care team even now. “I can’t even begin to tell you how much I think these contacts are helpful. I developed relationships with these people. They were there for me to talk to and, most of all, they were there for Georgie.”
Phelan is part of an online bereavement group and attends support groups at the hospital. She recognizes that she and her husband are grieving differently: “He wants to socialize. I want to be alone.” She’s also making a picture quilt, a legacy to her daughter.
Phelan has found that because she has been through the unthinkable, she’s treated a little too gently — or not at all — by friends and acquaintances. But she has a message for them about acceptance, something else she learned from her little girl.
“I guess people are uncomfortable,” she says. “They don’t know what to say to me. I get that look, you know, like ‘that’s Georgiana’s mom.’ It’s all right, it’s OK. I’m still here, you can talk to me. Just come up and say hi to me. People ignore you. They don’t know what to say. I feel like just saying, ‘Hello, it’s OK.’”
For Rheingold and the palliative care team, that’s the ultimate goal.
“Of my three patients that have died I feel this was the most comfortable for all involved — Georgie, her family and me,” she said. “It is always hard to see a child die, but I felt that we worked together as a team to make it the best possible death — if those words can be used together in the same sentence.’’
2001, Partnership for Caring, Inc.
Distributed by Knight Ridder/Tribune Information Services.

Tips:

Here are tips for family members on dealing with the life-threatening illness and death of a child:
  • Tell the doctors you want an honest answer about your child’s prognosis and treatment options.
  • Keep in mind that if you choose to stop pursuing therapy because the side effects are too severe, it can be a loving choice.
  • Find a doctor or nurse who is an expert in symptom control. Your child can be comfortable, whether you choose to have her die at home or in the hospital.
  • Talk about what your child has achieved in his life, no matter how old he is. 
  • Reassure and include siblings. They are too often neglected, or have unanswered questions and unnecessary guilt. 
  • Find out from the doctors what will happen in the actual time your child is dying so that what you see is not a surprise to you.
  • While your child is still alive, make memories. Take a lot of pictures, save a lock of hair or fingerprints, record his voice, have him draw pictures and write for you.
  • Take care of yourself. Let your friends, family and community help you.
  • Prepare for the funeral. And let siblings help with that; it is important to them.
  • Ask the doctors to tell you the really hard stuff — like the fact that if your child goes on a ventilator, he won’t be able to talk to you any more.
  • Get help from experts in grieving, even if you think you don’t need it.
  • Remember: What you choose as right for your child and family cannot be wrong.

Discussion Questions:

  1. How might pediatric provider teams deal with the fact that parents fear their child’s death but don’t bring it up? For example, Jennifer stated that she didn’t talk about it. She stated, “I didn’t tell anybody that,  because I was afraid I would get yelled at, having to say something like that or feel something like that, so I did whatever my doctor wanted to do as far as the chemotherapy.”      
  2. Jennifer’s team expressed very well the mental line, the line of acceptance of the inevitability of death, that must be crossed by parents to accept a palliative care referral. What are some ways that our communication as health care providers contributes to the myth that palliative care is only for the dying? How can we make palliative care more attractive  for families and providers, so that children can experience the comfort that Georgiana felt? So that it isn’t a “choice” they have to make, but  rather, a service that is provided in mainstream medicine?  
  3. Jennifer and Georgianna ultimately communicated very well about the fact  that she was dying. What are some ways that we can help children and parents  to express what they know, what they need, and what they fear? How can  we, or should we in all cases, break through the “mutual pretense” that prevents this communication?       
  4. What are the many types of decisions that have to be made if a child’s  parents and doctors are trying to decide whether the child should die at home or in the hospital? How can parents get information to make those decisions

Points and Observations:

  1. Jennifer is a very loving mother who wanted what was best for her daughter. As such, she presented both her heart and her head to the team as decisions were made.  She didn’t want the information sugar-coated, “hated” what she was told, yet appreciated the truth-telling. The health care team addressed both her emotional needs and questions as well as her need for facts and information.  How is this accomplished?  Are there pitfalls and common mistakes?  What are the resources available to parents and to physicians who are in this situation?
  2. Children know more than we think.  Georgiana sometimes presented very mature questions and attitudes to her caregivers.  How did she show what she knew and what she was afraid of?  To whom did she ask questions, and in whom did she confide?  Are there members of the health care team who can be especially helpful to providers and to parents when such a child needs to be involved in health care decisions?

References:

  1. Burd, L. (2001). Endings. University of North Dakota School of Medicine.  This is a booklet that raises the questions parents need to think about if their child has a terminal illness.  This is not a place to find the answers, but rather, to find the questions that parents need to ask medical staff in terms of making decisions and preparing for the death of their child.
  2. Davies, B. (1999).   Shadows in the sun: The experiences of sibling bereavement in childhood.  Philadelphia: Brunnder/Mazel.  This book includes practical guidance for both parents and professionals trying to help children grieving the death of a sibling.  The early and long-term issues are covered in a comprehensive and quite helpful fashion, using research findings and the family situation of each particular child. 
  3. Grollman, E. (1993).   Straight talk about death for teenagers: How to cope with losing someone you love.  Boston: Beacon Press.  This is a text geared for teenagers, written in a straight yet sensitive manner.
  4. Grollman, E (1990).  Talking about death: A dialogue between parent and child.  Boston: Beacon Press.  This is a sensitive, comprehensive review of talking with children about the death of loved ones.  There are modeled conversations and age-appropriate guidelines as well as a very complete list of resources.
  5. Moldow, D. G., & Martinson, I. (1991). Home care for seriously ill children: A manual for parents. Alexandria, VA: Children's Hospice International.  This booklet concentrates on the medical issues around death and dying, and provides more detail about handling them.  It is written in an understandable fashion, and is a helpful tool for parents to use as a guide to conversations with their medical team.
  6. Pike, M., & Wheeler, S. (1992). Goodbye my child. Omaha, NE: Centering Corp.  This book deals with the death of children of all ages, and includes information on organ donation, autopsy, and funeral arrangements.  It also deals well with the grief experienced by grandparents, brothers and sisters, and friends.
  7. Rosof, B. (1994). The worst loss: How families heal from the death of a child.  New York: Henry Holt.  This book describes the process of grieving that adults go through, and also describes the grief process of children. 
  8. Schaefer, D., & Lyons, C.  (1993). How do we tell the children?  A step-by-step guide for helping children two to teen cope when someone dies. New York: Newmarket Press.  This book offers practical and clearly written advice for adults who must talk to children of all ages about death.  This is done in the context of the different developmental ages of children.
  9. Schiff, H. S. (1977). The bereaved parent. New York: Penguin Books.  Through reflections of her own experience, a grieving parent normalizes the feelings many parents fear are unusual or abnormal. 
  10. Wagner, S.  (1994). The Andrew poems.  Lubbock, TX: Texas Tech University Press.  These are poems written by the mother of a little boy who drowned.  Her eloquent expressions of grief but also of the joy of her parenting bring comfort and a message to bereaved parents that they are not alone in their grief.
 

Links: You must be connected to the internet for these links to work.

Growth House
Excellent source for books and other publications regarding end-of-life care
(415) 255-9045
www.growthhouse.org

The National Organization for Rare Disorders, Inc.
Provides information about rare pediatric illnesses.
P.O. Box 8923
New Fairfield, CT 06812-8923
(203) 746-6518 
www.rarediseases.org

The Compassionate Friends
Provides grief support after the death of a child.
P.O. Box 3696
Oak Brook IL 60522-3696
(877) 969-0010
www.compassionatefriends.org

The Candlelighters Childhood Cancer Foundation
Offers support, advocacy and information to parents caring for children with cancer.
3910 Warner Street
Kensington, MD 20895
1-800-366-2223
www.candlelighters.org

Department of Symptom Control and Palliative Care
M. D. Anderson Cancer Center

Provides information and resources about symptom control and palliative care.
1515 Holcombe, Box 08
Houston, TX 77030
(713) 792-6085
www.mdanderson.org/departments/palliative/

End-of-Life Care for Children
Texas Children’s Cancer Center
Texas Children’s Hospital

Offers information and resources for families and professionals on end-of-life care for children. Also, offers “The End-of-Life Care for Children” handbook, which encompasses most of the materials on the website.
Houston, TX
www.childendoflifecare.org/home.html

Project Joy and Hope for Texas
Offers news and resource information about end-of-life care and bereavement services for families with children with life limiting illness.
PO Box 5111
Pasadena, TX 77508
(713) 944-6JOY or toll free at (866) JOYHOPE
www.joyandhope.org/contact.html

Children’s International Project on Palliative/Hospice Services (ChIPPS)
National Hospice and Palliative Care Organization

Offers information on the program to enhance the science and practice of pediatric hospice and palliative care
1700 Diagonal Road, Suite 300
Alexandria, VA 22314
(703) 837-1500 
www.nhpco.org 

Children's Hospice International
Offers information on children’s hospice care.
2202 Mt. Vernon Ave, Suite 3C
Alexandria, VA 22301
1-800-24-CHILD or (703) 684-0330
www.chionline.org

Pediatric Pain-Science Helping Children
IWK Grace Health Center, Dalhousie University
Offers resources, information and self-help for parents.
Halifax, Nova Scotia
Canada
is.dal.ca/~pedpain/pedpain.html