CHILD IS DYING
about Georgiana –
Jennifer Phelan knows it’s possible to survive the unthinkable.
She knows because her 7-year-old daughter Georgiana showed her
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.
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.
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
a child is dying: Smallest patient offers biggest lesson
Bruce Himelstein and Joanne Hilden
Jennifer Phelan knows it’s possible to survive the
unthinkable. She knows because her 7-year-old daughter showed
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
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
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
“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
“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
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
“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.
are tips for family members on dealing with the life-threatening
illness and death of a child:
the doctors you want an honest answer about your child’s
prognosis and treatment options.
in mind that if you choose to stop pursuing therapy because
the side effects are too severe, it can be a loving choice.
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.
about what your child has achieved in his life, no matter
how old he is.
and include siblings. They are too often neglected, or
have unanswered questions and unnecessary guilt.
out from the doctors what will happen in the actual time
your child is dying so that what you see is not a surprise
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.
care of yourself. Let your friends, family and community
for the funeral. And let siblings help with that; it is
important to them.
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.
help from experts in grieving, even if you think you don’t
What you choose as right for your child and family cannot
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
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?
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
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
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?
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?
- 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.
- 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.
- 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
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
Excellent source for books and other publications regarding
National Organization for Rare Disorders, Inc.
Provides information about rare pediatric illnesses.
P.O. Box 8923
New Fairfield, CT 06812-8923
Provides grief support after the death of a child.
P.O. Box 3696
Oak Brook IL 60522-3696
Candlelighters Childhood Cancer Foundation
Offers support, advocacy and information to parents caring
for children with cancer.
3910 Warner Street
Kensington, MD 20895
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
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.
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
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
Offers information on children’s hospice care.
2202 Mt. Vernon Ave, Suite 3C
Alexandria, VA 22301
1-800-24-CHILD or (703) 684-0330
Pain-Science Helping Children
IWK Grace Health Center, Dalhousie University
Offers resources, information and self-help for parents.
Halifax, Nova Scotia