caring for children needing palliative care

1. CARING FOR DYING CHILDREN
A doctor shares her pain and joy caring for dying
children.
Dr. Felicia Chang
(Writing Team)

2. “OK,
give me 20
minutes and I will be there!”, I put down my phone. “ I’m so sorry
Mrs. Lee, I have to cut short this conversation because some urgent
matters came up. “ I explained to my patient about the reason I had to leave.
As I was rushing to Ling Ling’s house, I was in tears. I was trying so hard not to
cry. “ Felicia! You need to pull yourself together and act professionally. Do not let
your emotion take over now. Please you cannot afford it!” That was the mantra I
kept repeating while driving like a maniac.
As I entered the house, it felt so strange. I was here just an hour ago. But the
feeling was so different this time. It was so cold and so distant. “Hi Kong Kong
and Po Po,”I addressed Ling Ling’s grandparents . My voice was barely audible
but it did not matter because they did not respond. They just let their head hung
down like beaten dolls. As I walked up the stairs, it felt like a 100-ton rock tied to
my legs. Every step was heavier than the previous one as I walk towards the
room. Just before I entered the room, I took a deep breath and then pushed the
door open.
The little one was lying on her favourite bed. Her
mom was holding her close to her heart, rocking
gently. I heard a quiet whisper. “ Mommy love you
darling. You are my precious diamond. I love you.”
Her daddy was hugging both of them and joined
the rocking motion. It was so beautiful and yet so
sad at the same time. They sensed someone
looking at them and both look up. Their eyes were
red from crying. “May I?” They nodded.
Her little arms felt so cold. It was just an hour ago when she was still breathing.
Her body was still soft. Eyes were shut close. Perhaps it was my imagination but
she seems to smile. As I was carrying her little battered body, I asked her
permission to check on her. “Ling darling, this is Dr. Felicia. I am just going to
check you like I usually do ok,” I whispered into her ears. No pulse, I felt my eyes
getting warm. No breathing, I felt drops of my tears start to form in my lower
eyelids. No heartbeat and I saw my tears fell on her cheek. “I am sorry Mr. and
Mrs. Lim, Ling Ling has left us and gone to heaven.”

3. Suddenly the once quiet room was filled with crying.
There was sudden realization it was all over. A
beautiful angel had joined the heavenly host at the age
of 5. “ We love you Ling. We will miss you. We will
never forget you. Please don’t forget us. You are the
best daughter we had ever had.” Her parents gave her
a kiss on her forehead. “ Bye Ling darling, it is my privilege
to care for you. I love you too. Go in peace.” I said my
goodbyes and gently kissed her cheek.
As I walked down the stair, Ling Ling’s grandparents turned their heads towards
me. I shook my head gently. Grandma cried and grandpa turned his face away.
With a heavy heart I got into my car and drove away.
As I was driving away, I suddenly felt I needed to shout. I screamed in my car and
my tears would not stop flowing. I cried so much that I could not see what was in
front of me. I had to pull over at the curb and allow my grief to pour out! Took me
15 minutes before I could drive home. And the rest of the day was a blur.
Taking care of very ill children is the toughest part of being a
palliative care doctor. By the time the children were sent to us,
most have very short life expectancy. Some stay for short
months but many very short days. Taking care of dying
children needs special skills. The skill to communicate
with the child who may not want you. The skill to assess
their condition when they were afraid of you. The skill to
make friends with them and their family.
Ling Ling was referred to me at the age of 4. She had a very rare liver cancer and
by the time I saw her, she was severely jaundice and had a big and swollen
tummy. She refused to look at me at first, always sat with her back facing me.
Eventually I won her over with bribery! I bought sticker books and every visit a
new batch of stickers. Though she did not feel threatened by my presence, she
never talked to me. When I though my effort was lost, I decided to space out my
visit. Instead of twice-weekly visit, I cut down to one. The first time I did not visit
she asked for me. How strange! A child who did not talk to me for 4 months
asked for me. That was when I knew she accepted me.
As she continues to deteriorate, I prepared her parents about her deterioration.
Looking back now, I did not prepare my own soul. As medical personnel
especially dealing with end stage cancer, we can guess when will be the last week
of life. But nothing prepare for the emotional emptiness and despair we felt
when one of ‘our’ children dies. The first death is always the hardest. Ling Ling
was my first child who died at home.
How do we make sense of what had happened? How can an innocent life like her

4. be allowed to suffer so much of discomfort and pain? Did she even get the
chance to know Jesus? Where will she be after she left her earthly body? No
answer.
After Ling Ling’s dead, I was not able to do my work. My nurse knew something
was wrong because I could not give advice. I was grieving so bad that I could not
continue working. In my heart I knew I did the best but why did I still feel so
miserable. I took a break and went to away, just to leave KL and my work.
I went back to work and my boss asked me if I wanted to continue seeing
children. He gave me a choice - I could see both adult and children or adult
patients only. But he warned me that the feeling that I had gone through would
never leave me because with every child’s death, I would go through the whole
grieving process again. It was a tough decision. The pain was almost unbearable.
The same day, I got down on my knee. “Dear
Lord, do you want me to continue? Loosing Ling
Ling was terrible. I felt like a failure! I do not
understand why would you allow such a gentle
soul suffer so much. I was angry. What wrong
has she committed? Are you not all merciful?
Can’t you spare the children? Why do you want
to take care of them? Why would you want me
to suffer too? I cried. It is not fair! Bad people
live and young innocent kid die. And how could you ask me to be part of this?”
The next day I told my boss. I wanted the children. No matter how painful it
would be, the least I could do was to walk with them to the door of death. That
was 8 years ago when I started to see dying and ill children. I gave them my all. I
controlled the symptom and took away the pain as best that I could. I took them
out for dinner, shopping, even to amusement park to fulfill their final wish. I ate
with them, laugh with them, cried with them. I gave them my professional care as
well as to demonstrate God’s love to them through kindness and love.
Why did I choose this path? God did not answer me that
evening. There was no booming sound that said, “
Felicia, I want you to care for children because….” Or a
bible verses that stood out that said it was God’s will. I
continue to take care of children because I can. As
simple as that. If I do not do it (care for dying
children), who will? I know I have a million and one
question that I am going to throw to Jesus when we meet, but right know, all I
want is to take care of these little angels so that they have one more friend before

5. they meet their maker.
Sometimes we make difficult choices and we do not know if that is the right
choice. It becomes harder when there seems to be no answer. Although God did
not answer me that evening, I knew it was my calling to serve Him in this area. I
will not lie, it was not easy and it is not easy even now. I have lost count the
nights I cried myself to sleep when I lost a patient. I have lost count the days
when I felt like a zombie when more than 2 patients died the same day. My work
reminded me that we are all mortal and no one escapes death. But my strength
comes from God. I am able to continue what I do because of God’s promises that
He is my strength. I would have thrown in the towel if not because God is with
me all the way.
For Ling Ling, it was my first lost. Taking care of her helped me to be a better
person. I learned about patience around kids. I learned to take care of kids, you
need to speak their language and their common language is play. So I learn about
playing. I learn that relationship sometimes does not need words, just your
presence. I have learned that children are pretty resilient. Despite the suffering
they go through, they still want to play, wanted to be hug and wanted to be love.
Once a year, I still receive Chinese New Year blessing from her parents. It is a
reminder to myself that I have helped a soul to find her home in heaven.
At the end of the day, I thank God for the opportunity to serve His children. I
thank God for His calling for me. I thank God for the strength,
patience and wisdom He gave me when I have to deal with
children who are facing death. Thank you dear Jesus for loving
the children and me! So not afraid to chose the road less travel
because the end result is so much sweeter. God Bless!

6. they meet their maker.
Sometimes we make difficult choices and we do not know if that is the right
choice. It becomes harder when there seems to be no answer. Although God did
not answer me that evening, I knew it was my calling to serve Him in this area. I
will not lie, it was not easy and it is not easy even now. I have lost count the
nights I cried myself to sleep when I lost a patient. I have lost count the days
when I felt like a zombie when more than 2 patients died the same day. My work
reminded me that we are all mortal and no one escapes death. But my strength
comes from God. I am able to continue what I do because of God’s promises that
He is my strength. I would have thrown in the towel if not because God is with
me all the way.
For Ling Ling, it was my first lost. Taking care of her helped me to be a better
person. I learned about patience around kids. I learned to take care of kids, you
need to speak their language and their common language is play. So I learn about
playing. I learn that relationship sometimes does not need words, just your
presence. I have learned that children are pretty resilient. Despite the suffering
they go through, they still want to play, wanted to be hug and wanted to be love.
Once a year, I still receive Chinese New Year blessing from her parents. It is a
reminder to myself that I have helped a soul to find her home in heaven.
At the end of the day, I thank God for the opportunity to serve His children. I
thank God for His calling for me. I thank God for the strength,
patience and wisdom He gave me when I have to deal with
children who are facing death. Thank you dear Jesus for loving
the children and me! So not afraid to chose the road less travel
because the end result is so much sweeter. God Bless!