Care of a dying child
Like adults, children are eligible for all types of hospice care: routine, inpatient, continuous, and respite. Almost always, children receive hospice care at home or as inpatients.
However, a hospice can’t bill for services if a patient is still undergoing aggressive treatment, and most parents want to continue treatment if their child’s life has any chance of being spared. Consequently, most children who could benefit from hospice care never receive it, and few hospice programs focus specifically on children. Although most adult hospice programs will accept pediatric patients, most of the staff would be the first to admit that they’re ill prepared to serve the needs of dying children. In fact, many hospice nurses choose to work only with adults, finding work with children too painful.
Two common reasons for children to need end-of-life care are end-stage cancer and grave congenital defects or birth injuries. Many other problems can bring a dying child to end-of-life care as well, including accidents, violence, genetic diseases, and almost every imaginable complication of illness or surgery. Families of dying children often are faced with the same painful decisions that families of dying adults must face, including withdrawing life support. (See Letting Lisa go, pages 184 and 185.)
Child care
If you’re helping to care for a dying child, much of what you provide will mirror the types of care an adult would receive. In addition, keep these special
points in mind. (See Guidelines for care of dying children and their parents, page 186.)
points in mind. (See Guidelines for care of dying children and their parents, page 186.)
Expert InsightsLetting Lisa go
I’m caring for Lisa, age 10, who has a rare and aggressive brain tumor with a poor prognosis. Bright and articulate, she told me months ago that she wasn’t afraid to die and didn’t want to undergo chemotherapy. But her parents convinced her to give it a try, even though the response rate was less than 5%.
The treatment wasn’t effective, and now Lisa is nearing the end of her life. She seems to have accepted this, but her parents won’t give up. Yesterday I heard her dad say, “You can’t die now; we need you!”
I’m deeply troubled by this and want to help the child, but how? — K.S., Ontario
This situation is extremely difficult for all involved, especially Lisa. She has to face dying and death without her family’s support — because although they’re physically present, they’re not emotionally or spiritually available.
For Lisa’s sake, her parents need to let her go. And you can be the catalyst that helps them take this step.
Sit privately with Lisa and ask if she feels like sharing what she’s going through and how she feels about this cancer. If she does, ask her if she wants you to relay those words to her family or if she’d prefer to tell them herself. If she chooses the latter, ask if she’d like you to be present as her helper.
With your support, she may find the courage to speak to her parents about her wishes. She’s probably tried to talk with them in the past but been discouraged by their distress.
In your role as Lisa’s advocate, you might call her parents to her bedside and say something like this: “Lisa loves you so much and appreciates all you’ve done during these weeks and months. Now she has something very important that she needs to say.”
Listening to their child say that she doesn’t want to go on will be heartbreaking for Lisa’s parents. But they need to hear the truth.
During the conversation, you might ask Lisa if she’d like to discuss her funeral or tell her family how she wants to be remembered. This is the time to identify her favorite music, readings, and people she’d like to have speak about who she was and why she was a great kid. You could suggest the idea of making a casting of her hand that she can give to her parents and grandparents. Or she might want to produce a short video as a personal way to say good-bye to friends and family.
Finally, I recommend that you talk about getting hospice involved. Lisa’s parents may need help to honor her wish to avoid “heroic” interventions as death approaches. Hospice personnel can provide good counsel and support in this matter. They’ll also provide bereavement follow-up for a year after Lisa dies, when her parents need compassion and emotional support as they adjust to life without their child.
— JOY UFEMA, RN, MS
Safe haven
As much as possible, keep the child’s bed a safe haven. Try not to perform painful procedures while the child is in bed. Nurses who work in children’s hospitals or designated pediatric units usually have policies to guide their practice and a designated procedure room to avoid the need to cause a child pain while in bed.
If you don’t have the luxury of a procedure room and the patient is ambulatory or up in a wheelchair, consider going into another room. For example, you might be able to set up a sterile field on the kitchen table to perform I.V. or port maintenance.
To respect the child’s privacy in the home, many procedures — such as urinary catheter or wound care — may have to be done in the child’s room or even in the bed. And a patient who is immobilized and dying shouldn’t be removed from bed regardless of age.
No lying
Never lie to a child, especially a child who is your patient. If a procedure is going to hurt, tell the truth. A patient who is dying needs to be able to trust you; if you lie, that bond of trust will not be possible.
Also, remember that the child is your patient first. Listen to what the child is saying, and respond according to the developmental level of the child, using words or actions he understands. Prepare the child ahead of time for any changes in the routine or new procedures. Be the child’s advocate,
and help him express his thoughts and wishes to family and physicians if needed.
and help him express his thoughts and wishes to family and physicians if needed.
Guidelines for care of dying children and their parents
Never lie to the child.
Keep the child’s bed a safe haven whenever possible.
Be the child’s advocate first.
Be careful what you say and how you say it.
Consult with social services and spiritual providers to help parents let go of the child’s life.
Provide privacy to say good-bye after the death.
Provide private access to a telephone.
Help with transportation and food as needed, if the parents and child aren’t at home.
Refer the family to bereavement services, particularly those designed for parents.
Family care
Each family of a dying child faces unique heartbreak. Family members won’t always be rational, and they won’t always be receptive to teaching and learning. Stress rarely brings out the best in people and, by default, you may be on the receiving end of the family’s turbulent emotions at times. Stay calm and professional, and listen empathetically. Identify their most important need at the moment and work with them to meet it. They may be hungry, tired, financially stressed, or in need of time for their own personal hygiene or emotional outlets. They may also be struggling with emotional and spiritual distress, frustration, anger, denial, or grief. Helping the parents through this period can make them better able to be there for their child.
The sample cases included here offer an idea of the range of family issues that may arise when a child is dying. For clarity, each case tries to focus on one issue, even though many families have multiple issues. The patients and families are invented or composites; none represent real people.
Aban, a newborn
Baby Aban was the first child of a newlywed Muslim couple. Aban’s mother was a teenager brought from the Middle East as the bride of the oldest son of an unassimilated Arab immigrant family who had been in the United States a few years. The young mother spoke only Arabic; her husband spoke limited English. Aban’s father was only a few years older than his bride, with minimal education.
The couple lived with the groom’s parents and his younger brothers and sisters. The groom’s parents spoke only Arabic, and only Arabic was spoken in the home. The only members of the household who spoke English fluently were the younger children who had attended public school in the United States.
Silent arrival
Aban came into the world silently. His silence and floppy appearance alerted the hospital staff that he needed further evaluation. He was examined by the finest neonatal neurologists, and every possible test was done. The prognosis was grave. Aban had only brain stem function, which allowed him to breathe but little more. Despite having been told all of this in Arabic, neither of Aban’s parents understood the severity and consequences of Aban’s condition.
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