Kids courageous facing death
September 15th, 2010
02:10 PM ET

Kids courageous facing death

Adults facing serious or terminal illnesses often ask themselves "Why me?" But it's the rare child who has this reaction, says Dr. Sarah Friebert of Akron Children’s Hospital in Akron, Ohio.

"The older we get, the more entitled we feel ... we sort of expect that we're going to live to be 100 or we’re going to be rich or we’re going to be this or we’re going to be that," says Friebert. "Kids don’t have that sense of entitlement; they sort of live in the present more than we do."

Friebert works with dying and seriously ill children as the director of pediatric palliative care at Akron Children’s. She finds that kids have a particular courage and resilience when it comes to facing the inevitable.

"Most children are very aware of what's going to happen with them," and often understand this faster than the adults in their lives, says Friebert, who attended the National Hospice and Palliative Care Organization convention in Atlanta, Georgia, this week.

Her program aims to reduce the suffering of these children and their families through an approach that includes pain management, psychological counseling, spiritual guidance, and education about navigating the health care system. The program visits seriously ill children in their homes, advocates on behalf of them at school and addresses other quality of life issues.

Palliative care does not mean giving up on curative treatments, she said. Instead, it can be a supplement to other therapies to help families cope with difficult situations. Friebert's philosophy is, "Let’s hope for the best and prepare for the worst."

"We usually try to help families allow children to express their needs, have their goals met, and really have a sense that their life has had meaning, and that they have made a contribution," she said.

Until recently, terminally ill children were only eligible for Medicaid to cover hospice care if their parents agreed to not pursue cure-directed therapy. This year's health care legislation permanently changes that, so parents do not have to choose between hospice and conventional medical therapies. Friebert has not yet seen the effects of this new legislation, but it is being enacted by the individual states, and she is working with the state of Ohio on these issues.

But there is still no coverage for children who are not terminally ill, Friebert said. Some kids who come to Friebert's program have serious conditions that may be managed over many years as chronic illnesses. These include cystic fibrosis, complex congenital heart disease, severe neurological impairments, genetic disorders, and chromosome disorders.

More children's hospitals in the United States are looking for ways to develop these programs, Friebert said. She estimates that between 40 and 70 percent of these institutions have some form of pediatric palliative care initiative.

Financial issues discourage many hospitals from following suit, she said. There is also resistance to the idea of children dying - and hospitals don't necessarily want to create a program around the facts that young patients die and miracles don't happen for everyone.

Despite working with dying children on a daily basis, Friebert does not find her job depressing. She went into medicine to alleviate suffering and help people live better, which is the mission of her program.

"I know that I can’t save everybody’s life," she said. "What really matters to me at the end of the day is that these families feel that they’ve done the best job that they can for their child."

soundoff (455 Responses)
  1. NadineW

    Well said JasonB. I am an ATHEIST as well and even I am disgusted by the arrogance of some atheists (who tell themselves that they are "liberal" and "open minded"). It is just as wrong for me to tell a Christian that he is foolish and superstitious as it is for a Christian to tell me that I am a bad person who is going to hell. Maybe the Christians are right. Maybe the Muslims are right. Maybe the Buddhists are right. Who knows? Who cares? In the end we're ALL going to die anyway. No one is better than anyone else.

    September 15, 2010 at 23:03 | Report abuse | Reply
  2. Older Brother

    Thank you Dr Friebert for everything you do for these you children. As the son of a cancer researcher i hear stories everyday on how a 6 or 7 year old child passes away due to their illness. and to see that someone is taking a stand and helping ease the process brings tears to my eyes.

    September 15, 2010 at 23:15 | Report abuse | Reply
  3. Mom to an angel

    I wish the hospital my daughter was in had pallaitive care. She was only ten weeks old born with CHD. The doctors and nurses were always outwardly positive about her condition but I could always sense a reservation in their voices. It seems pallaitive care would of encouraged them to dare to talk about "what if" and would of given me some help in dealing with my own doubts about her making it as well as helped us prepare. Its been 6 weeks since she died and it have left and enormous hole in my heart and my childrens too.

    September 15, 2010 at 23:31 | Report abuse | Reply
  4. MarkG

    Just the portion of the Healthcare Reform bill that has allowed terminally ill children and their parents the right to CHOOSE Hospice AND Curative treatment instead of one or the other is reason enough to prevent the Tea-Party/Repubicans from having any influence on congress.

    September 16, 2010 at 00:03 | Report abuse | Reply
  5. Kelly

    I am surprised at the number of atheists posting comments. I agree with Abraham Lincoln who said, " I can see how it might be possible for someone to look around on earth and not believe in God, but I cannot conceive how anyone could look up into heaven and say there is no God."

    September 16, 2010 at 00:43 | Report abuse | Reply
  6. AMP

    All this G-d talk. To quote Sammie Davis Jr to Archie Bunker on God – "She's Black."

    September 16, 2010 at 01:12 | Report abuse | Reply
  7. Paul Ronco

    >> Until recently, terminally ill children were only eligible for Medicaid to cover hospice care if their parents agreed to not pursue cure-directed therapy. This year's health care legislation permanently changes that, so parents do not have to choose between hospice and conventional medical therapies.


    September 16, 2010 at 01:16 | Report abuse | Reply
  8. Sandy

    I have to wonder if the reason children don't say "why me?" as often as adults do is also because they have never had the illusion of control that adults do. They know that there are many things they are powerless to change, but we adults live our lives believing that we control our destinies, only to be caught short when illness or accident changes the future we envisioned for ourselves.

    As a parent I can vouch for children saying "why me?" in other areas - why do I have to do something my sibling doesn't, why do I have to do this chore, etc.

    September 16, 2010 at 01:46 | Report abuse | Reply
  9. P Marcos

    Thank you CNN for posting this wonderful article. It reinforce my faith in humanity. Those little brave souls who take their destiny without complains.... and look at me... I want to show the world that my God is right... so let me burn someone else's faith or let me destroy their faith...! This story humbles me...... Thank you CNN....

    September 16, 2010 at 02:29 | Report abuse | Reply
  10. Guest

    don't let them confuse you; the reason the kids don't ask is because they know better

    September 16, 2010 at 02:56 | Report abuse | Reply
  11. Cuadrose

    I only believe in a God of love. I cannot imagine believing in a God who allows this kind of suffering and loss. So, when people say "it's God's Will," I want to puke. Or, when they say 'there must a lesson to learn from all this," I want to puke. The mystery of life is just that, a mystery. If it help's someone to believe that it's God's will, I guess that is what works for them and that is okay. However, for me, I just want to puke when someone suggests that God has a part in hurting another, or allowing another to hurt. The mystery of life is something that happens all day everyday. Most of what happens will never be understood so, I work to just accept that it is what it is. There is no acceptable answer to the why question for me that would make a child suffering or dying somehow okay. I live with cancer everyday and I am grateful to be here. I have never asked 'why me,' why not me, should I want it to be someone else? I don't have it because of anything I did, in the mystery of life, it just happens, a fluke. It doesn't always happen because of genetics, generational genes being passed on. Even for those with a possible genetic predisposition, it is the mystery of life why some have the genes and other's don't. We can plan to live a long life however, we cannot predict that we will. Maybe these children aren't encumbered with the attachments to life that adults develop by living longer. Maybe the children are the lucky ones, I don't know. I and I am sure there parents, would rather they live a long and full life. I can only imagine how painful it must be for a parent to outlive their child. I am grateful this Doctor provides the kind of compassionate care that she does. I am happy that the new healthcare program will make curative care possible even if Medicaid is paying for it or whether the patient is in Hospice. As adults it is important to let our families know what we want and don't want when it comes to care for terminal illness so they don't have to make those difficult decisions in the midst of an emotionally difficult time. It is the loving thing to do when you ask the ill about their wishes even when it feels like the most difficult conversation to have. It is difficult conversation however, it is about reality. So if the belief in God helps you get through it so be it, there are also other ways to get through it too.

    September 16, 2010 at 04:10 | Report abuse | Reply
  12. Sherry

    I lost my only son to cancer just short of his 17th birthday. I had not been to church for years, but my son had been attending a local church before his diagnosis. One of the older gentlemen he met at church also had cancer, and this angel stopped by to counsel my son almost daily. Brett came to me and asked if it would be ok for him to be baptised in the church. I was shocked that he felt he needed to ask my persmission, but he thought since I did not attend any church that I might be upset. That night we held each other and cried til we were cried out. I explained the although I myself did not believe in any religious group, I knew that there was an greater power that had created us all. His baptism was a beautiful thing, right there in my home, since he was no longer able to leave his bed. He never asked "why me?', but he did ask my husband, (his step dad) to take care of me. Here he lay dying, but his only concern was over leaving me. He died 2 weeks later. Society may have seen him as a child, but he was more of a man than anyone I have ever known. He would be 35 this Saturday, and the pain is as fresh as it ever was. I am still not affiliated with any church, but I know that when I leave this mortal coil, I will see my beautiful son again and hold him in my arms. And yes,I do believe in God, and I know he believes in me.

    September 16, 2010 at 05:29 | Report abuse | Reply
  13. Jessica Cromer

    I am sorry for the loss of your child!I strongly believe that there is a God and that all children whose lives are cut short share Paradise with Him...

    September 16, 2010 at 06:02 | Report abuse | Reply
  14. jayson

    You all get mad at atheist people for telling there belief about no god and say we should keep it ourself and not mention it but yet you all mention god all the time to us. So we should not mention religin at all and just keep it all to ourselves, no one will have to hear either persons thoery.

    September 16, 2010 at 06:28 | Report abuse | Reply
  15. Justina

    I remember as a kid I wasn't afraid of the inevitable death, somehow, not at all. In God's mercy I'm alive today. Thank God for the mysterious comfort and courage He provides the little ones.

    September 16, 2010 at 07:26 | Report abuse | Reply
  16. mike

    The kids don't whine because they have no memory of a better life. That's it. It has nothing to do with "courage". The author is just pimping kids' stories to boost her own ego, which in reality is a pretty sad form of exploitation. Fail.

    September 16, 2010 at 07:30 | Report abuse | Reply
    • Rich

      clearly... you have no children

      September 16, 2010 at 08:31 | Report abuse |
  17. Sandra

    Well said NYGIRL.........Nice way of expressing what truly is out there right now. It's sad that some of us can't or wont pay attention to what's in their hearts. There is a purpose on earth for Dr. Friebert in what she is doing with families and ill children. It's not a bad thing. Let's not show so much anger and bitterness here. Regardless, if your a christian or not. You are not the one suffering here, it's all about the dying children here and how this can be dealt with families. Imagine if your child is dying right now ? Give peace and warmth for the dying children. Respect.

    September 16, 2010 at 07:51 | Report abuse | Reply
  18. Rich

    My son was treated at Akron Childrens... GREAT hospital, wonderful dr's and staff. Would recomend to anyone looking for a great childrens hospital

    September 16, 2010 at 08:30 | Report abuse | Reply
  19. joe

    it is important to allow and encourage a dieing persons belief in God, or whatever, or at least not condem their belief. Like it or not, 'belief' is important in helping the person cope. What a dieing person does not need are mindless social workers and ridiculous do-gooders; and all the low life scum-bags that would deny a dieing person whatever drugs are needed to help in dealing with pain and suffering.

    September 16, 2010 at 08:35 | Report abuse | Reply
  20. ohlovethelordforheisgood

    Now we see what Christ meant when he said "excepy you be converted and become as little children, you will not see the kingdom of heaven" Gospel of Matthew 18:3,,,,man is called to repent of his sin and trust God as these dear children do and if he cannot do this its because of SIN,

    September 16, 2010 at 08:46 | Report abuse | Reply
  21. Bette

    Five years ago I witnessed first hand at how children deal with their own possible mortality. My young son went into respiratory arrest 7 days after a liver transplant. He was given less than a 30% chance of survival. He asked my husband if he was going to die as he was struggling to breathe. What do you tell your child when faced with that kind of question? Well my husband told him not to worry, that he was in good hands. We thought we were going to be faced with having to say goodbye to our son. But againts all odds, he pulled through after 5 weeks on an ECMO machine. When he was finally off all assistance, he told us that he just wanted to live. Dying was not an option to him. Somehow he knew he was not checking out, yet. How does one explain how a 12 yr old defeated death? Even the doctors were amazed. Was it God, was it a guardian angel, or was it shear guts from a young boy? I don't know the answer, but I am happy to say that 12 yr old boy is a healthy 17 yr old today.

    September 16, 2010 at 08:58 | Report abuse | Reply
  22. Susan

    It is sad and discouraging to see some of the simplistic responses of those who lack faith. Picturing that God is some kind of divine vending machine meting out punishments to test people. Every suffering is part of human nature... and all human suffering can be redemptive if we allow God to work through the sufferings of our lives in a way that leads us closer to Him and to the truth... Newsflash... if you are human you will have difficulties and sufferings in your life... not because God is testing you but because YOU ARE HUMAN... What we do with these sufferings and what they do to us is what matters... do we grow beyond ourselves or do we become more selfish... do we grow closer to God or do we become bitter and angry... do we reach out to others or do we turn in on ourselves... do we use them to heal our human weaknesses or exacerbate them.... Everyone seems to forget that Christians believe that God became incarnate- willing to take on human sufferings so we can be free... not to torment us by cruel tests.
    Also- as a former hospice nurse I agree with the other nurse here... you cannot work with the dying and not come to believe that God does exist... His fingerprints are everywhere... God bless all those who care for the dying and the chronically ill.

    September 16, 2010 at 14:39 | Report abuse | Reply
  23. Kjcube

    Why is it called Kids courageous and not Courageous kids?

    September 19, 2010 at 14:04 | Report abuse | Reply
  24. Student of Life

    I feel sorry for atheists. They are so naive. The _truly_ intelligent people realize that we can't know whether God exists or not. There is no way to prove either stance. So the best you atheists can actually achieve, scientifically, is that you are agnostic. That means you must admit that you do not know. Are you psychologically strong enough to struggle with that reality? That you really don't know? And, are you strong enough to accept the possibility that God might ACTUALLY exist. When you allow yourself to think in that direction, and ponder this possibility, you will discover many things about yourself. But it takes strength to do this, and it is a lifelong meditation. So, please, don't cop out with saying you're an atheist. It's lame.

    September 20, 2010 at 00:57 | Report abuse | Reply
  25. BJJSchecter

    When I was going through chemo several years back, there were so many kids and babies going through chemo at the same time I was. I was a wreck, but, when I saw the strength that they displayed in their situation I was amazed and they gave me hope in my own struggle. I still get all sentimental thinking about it. Kids are so resillient and strong it's truly amazing.

    September 21, 2010 at 10:37 | Report abuse | Reply
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