End-of-life issues in pediatrics: No one expects children to die’
Discussing possibility of death is hard for parents, doctors
When a frail elderly patient is treated for a serious, chronic illness such as cancer, death is naturally assumed to be a possible outcome. But death is not so easy to accept in young patients, as any health care professional who has had pediatric patients die knows.
"The issue of just having to address death in children is an extremely emotional one," says Karen Trotochaud, MN, RN, senior program associate for the Emory University Center for Ethics in Atlanta and assistant director of the Healthcare Ethics Consortium of Georgia. "There is the tendency to do anything and everything to not have to address it. With elderly adults, people anticipate that death is a part of that time of life, but no one — not professionals, not parents — expects children to die."
While acknowledging that hope is an essential tool for parents and health care providers who work with seriously ill children, Trotochaud and Kathy Kinlaw, MDiv, say addressing death as a possibility for some young patients is necessary and probably should be done much earlier in the course of treatment than it usually is. Typically, death is not presented as an outcome until very shortly before the child actually dies, says Kinlaw, acting director of the Emory Center for Ethics and director of the center’s program in health science ethics.
End of life different for adults
Thousands of hours of research and millions of dollars have been spent exploring end-of-life issues in the last three decades, though almost all those efforts have centered on death in adults, particularly cancer deaths, Kinlaw points out, and not much of that information on adults translates well to pediatrics, she says. "We have grown to understand the distinctions between a variety of populations."
Experts in the area of neonatal death, especially those who work in neonatal intensive care units, are among the most adept at helping families deal with the dying process, Kinlaw says. But while a large percentage of pediatric deaths occur in neonates, that group of children is different from other pediatric populations — toddlers, older children, and teenagers — so end-of-life approaches for those patients and their families have to be different, as well.
An obvious difference is that when dealing with a child at the end of life, the health care team is actually dealing with parents or guardians who are making the decisions for the child. So when approaching the end of a child’s life, parental involvement has to be considered.
Determining how to handle the end of life for children is made more challenging, Trotochaud points out, by the shortage of models to work with.
"The early work in end of life was done in adults, because only 2% of deaths occur in children. So the mere fact of the small comparative number means we have less experience and we’ve done less work in that area," she explains. "When we begin looking at how you care for children at the end of life, there’s comparatively little out there that tells people how to do it."
Besides the fact that only a small number of children die each year compared to the number of adult deaths, the causes of childhood death are varied. For each cause of death and each type of end-of-life scenario, there are not many cases from which to learn.
Bring death into the discussion earlier
Kinlaw says health care providers and parents have a tendency to focus on aggressive treatment and curative measures, more so in pediatric patients than in older adults. Parents seek hope, and physicians and nurses have a hard time bringing the possibility of death into the discussion.
"It’s an extremely emotional time, and the desire to pursue anything to keep the child alive is paramount," Trotochaud adds.
Kinlaw and Trotochaud are studying pediatric end-of-life recommendations made by a Georgia task force of advisory members from a variety of professions who met in 2000 and 2001 to identify the barriers to optimal end-of-life care for children and make recommendations for further study.
The task force recommended identifying existing end-of-life resources in Georgia, recognizing gaps in the system, establishing a pathway for end-of-life and palliative care from diagnosis to death and bereavement, and creating an advance-planning guide for families. (See box listing task force findings.)
In working on the advance-planning guide, Kinlaw and Trotochaud say they have recognized a need for death to enter discussions between parents and physicians much sooner than it usually does.
"One of the movements is to try to begin conversations at a very different level, at the point of diagnosis of a life-threatening condition, and not waiting until hours or days before the child will die," explains Kinlaw. "Health care professionals are about intervening for the child, and the family is looking to the future of the child, so it’s the perfect storm of why we have difficulty in saying [to parents] that the one thing we have to talk about early on is that the child might not survive and that there are choices [parents] might have to make along the way."
Trotochaud says that in addition to giving parents more time to think about choices they may want to make during their child’s treatment, bringing up the subject of death early is important because the trajectory from diagnosis to death is much more unknown in children than it is in adults.
"We’ve learned from parents that a lot of times they’re thinking the child might die, but they’re reluctant to speak to their health care providers, and that seems to be a point where if we can begin those conversations, they can address how they will handle the end of life for these children," she says.
Broaching the subject of death while maintaining hope is an art practitioners have said they need guidance in, Kinlaw and Trotochaud say.
"One other thing that seems to be a big point is the need parents have to maintain hope. In my conversations with [bereaved] parents, they’ve said they continually maintain hope until their child dies; they never give up hope that the child will survive," says Trotochaud. "And I think that creates a barrier with the health care practitioners, who probably do give up hope for survival earlier than the parents do.
"So we need to learn to maintain the language of hope even when preparing for death."
Advance planning important
Adults, particularly adults who face chronic or life-threatening disease, are familiar with advance-planning measures such as living wills, advance directives, and health care proxies. But while adults can think ahead about what they want in terms of end-of-life care, children are not legally able — and often are not mature enough — to make end-of-life decisions.
The advance-planning guide that Kinlaw and Trotochaud are developing would guide health care providers and parents in making choices regarding the care they want their children to have at various stages of treatment.
"We had some early focus groups that included parents of children who had died, and we began to see some themes that were important to address," says Kinlaw. "We hope we can create a guide that would be a communication tool between health care providers and parents, to help them think about the kinds of choices they may have to make."
How do you talk about a child’s death?
One of the points a guide should address, she says, is how to talk about the death of a child — a seemingly simple matter, but one difficult to address when the patient is not an adult.
"One of the things we asked the parents about is how they heard the information [that their child might die]," explains Kinlaw. "How well did the health care provider do in telling them about the diagnosis? How well and when did the health care provider communicate that the child might die? Did they do it well? Did they do it clearly? Did they use euphemisms?"
Another point an advance-planning guide should address is pain control, Kinlaw says. Parents want their children to be comfortable, and there are effective ways to communicate to parents what the palliative care options are, she adds.
"Quality of life, control of symptoms and pain — what things give meaning to your child’s life, and how important will that be in terms of your decision making in how aggressive any treatment ought to be? That might be a part of a contextual discussion, rather than the hydration-nutrition-ventilator discussions that go into adults’ advance-planning discussions," she continues.
She says a natural consideration is whether, and how, to bring older children and adolescents into discussions of their own end-of-life care.
Illustrating the need for advance planning for children facing the end of life is a recently published report in the Journal of the American Medical Association on a Dutch study that found 36% of all pediatric deaths studied in the Netherlands required an end-of-life decision.1 The decisions included refraining from life-prolonging treatment (12%), palliative care with possible life-shortening effects (the "double effect") (21%), and use of drugs with the intent of hastening death (< 3%).
Need for end-of-life resources
In putting together a directory of resources for children facing the end of life, the Emory ethicists found some glaring shortages where they least expected.
"We found that a large percentage of childhood deaths occur in children’s hospitals, as you might expect," Trotochaud says. "So, we thought we’d find that there are a lot of services in children’s hospitals for children who die and their families, but that did not turn out to be the case.
"If there’s any one location that should beef up what they’re doing, it should be there. That was an important finding."
Hospice services for children are very limited, at least in Georgia, they say. Only two or three hospices in the state accept children, and those only see one or two children a year. Kinlaw says it’s not known whether that’s because children don’t go into hospice because their families don’t seek out the services, or because they’re not welcomed there.
On the positive side, Kinlaw says, hospitals reported good use of pain control for children at the end of life; however, there was not much focus on other symptoms, such as shortness of breath and nausea.
"We also learned fairly quickly that there are no pediatric long-term care facilities in Georgia, and that is a huge issue anywhere for families who are looking for appropriate resources for their children," she adds. "There are notable deficits in care and resources for caregivers."
Reference
- Vrakking AM, van der Heide A, Arts WFM, et al. Medical end-of-life decisions for children in the Netherlands. Arch Pediatr Adolesc Med 2005; 159:802-809.
Sources
- Karen Trotochaud, MN, RN, senior program associate, Emory University Center for Ethics, Atlanta; assistant director of the Healthcare Ethics Consortium of Georgia. Phone: (404) 727-2796. E-mail: [email protected].
- Kathy Kinlaw, MDiv, program director, health science ethics, and acting director, Emory University Center for Ethics, Atlanta. Phone: (404) 727-2201. E-mail: [email protected].
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