Medical end-of-life decisions for children in the Netherlands

09/01/05

CHICAGO – A Dutch study found that end-of-life decisions (ELD) are an important aspect of end-of-life care for children between one and 17 years old and that those decisions include choices to refrain from life-prolonging treatment and to relieve pain or symptoms, according to a report in the September issue of Archives of Pediatrics & Adolescent Medicine, one of the JAMA/Archives journals.

Most studies of end-of-life decisions (defined as decisions that intentionally or otherwise hasten death) have focused on adults or newborn infants, according to background information in the article. End-of-life decisions range from decisions to forgo potentially life-sustaining treatments and decisions to alleviate pain or other symptoms by using drugs with a possible life-shortening effect, to decisions to give physician assistance in dying, that is, the use of drugs with the aim of ending life.

Astrid M. Vrakking, M.Sc., of Erasmus MC, University Medical Center Rotterdam, the Netherlands, and colleagues conducted two studies to assess the frequency of end-of-life decisions preceding child death and the characteristics of the decision-making process in the Netherlands. The first was a death certificate study in which all 129 physicians reporting the death of a child aged one to 17 years between August and December 2001 received a written questionnaire. The second was an interview study in which face-to-face interviews were held with 63 physicians working in pediatric hospital departments.

"Some 36 percent of all deaths of children between the ages of one and 17 years during the relevant period were preceded by an end-of-life decision: 12 percent by a decision to refrain from potentially life-prolonging treatment; 21 percent by the alleviation of pain or symptoms with a possible life-shortening effect; and 2.7 percent by the use of drugs with the explicit intention of hastening death," the authors report. "The interview study examined 76 cases of end-of-life decision making. End-of-life decisions were discussed with all nine competent and three partly competent children, with the parents in all cases, with other physicians in 75 cases, and with nurses in 66 cases."

"End-of-life decision making is an important aspect of end-of-life care for children younger than 18 years," the authors conclude. "An ELD is made in about one third of the deaths in this age group, although physician-assisted dying is rare in this age group, especially for older children. … Communication about end-of-life decision making for children typically involves caregivers, parents, and, if possible, the child. To gain more insight into the end-of-life decision-making process, experiences and opinions of parents and other caregivers, such as nursing staff, should be studied as well."

(Arch Pediatr Adolesc Med. 2005; 159:802-809. Available pre-embargo to the media at www.jamamedia.org.)

Editor's Note: This study was funded by a grant from the Ministry of Health, Welfare and Sport and the Ministry of Justice, Den Haag, the Netherlands.

Editiorial: The Emerging Issue of Euthanasia
In an editorial accompanying the article, Harold B. Siden, M.D., M.H.Sc., of the University of British Columbia, Vancouver, writes, "As one might expect, discontinuing a life-support intervention or giving drugs to alleviate pain that might have a life-shortening effect was far more common than active euthanasia or physician-assisted suicide, which occurred in 2.7 percent of the cases."

"Consultation was a common theme in all of the interviews," Dr. Siden writes. "End-of-life discussions were held with parents in all cases, and half of the time the discussion was requested by the parents. Physicians involved nurses in 66 of 76 cases and consulted a colleague in 100 percent of the cases. The decision to enter the end-of-life arena is not an easy one, regardless of the child's situation."

Dr. Sidens concludes that the message of these studies is "that euthanasia does occur, and we need to understand it better in pediatrics. Even community general pediatricians, who seem far removed from the debate, need to know that their chronically ill patients who have diagnoses of life-threatening diseases are themselves asking about end-of-life decisions. The genie is out of the bottle, and families will want information about what is increasingly discussed. The strength of this study is that it helps us to ask the next questions, generating momentum and potential for future research.

(Arch Pediatr Adolesc Med. 2005; 159:887-889. Available pre-embargo to the media at www.jamamedia.org.)

Editorial: Is There Any Consensus About End-of-Life Care in Pediatrics?
In a second editorial accompanying the article, Jeffrey P. Burns, M.D., M.P.H. and Christine Mitchell, R.N., M.S., of Harvard Medical School, address the question of whether the United States has an ethical framework to guide the provision of sedation and analgesia to terminally ill children. They suggest the doctrine of double effect, where a bad effect is tolerated if an action's good effect is what is intended, such as administering morphine to relieve suffering even though it may have the effect of depression of respiration (slowing breathing) as well. "Double-effect reasoning provides a defensible rationale for escalating doses among practitioners who support neither euthanasia at one extreme nor the practice of allowing patients to die with untreated suffering at the other," the authors write.

"Yet, if one looks past the cacophonous debate often found in the media on this issue, there is broad consensus about many fundamental aspects of end-of-life care for children," the authors conclude. "That consensus forms around several core principles almost universally held: parents and families should be encouraged to be present and to comfort the dying child; children should not die experiencing preventable suffering, if at all possible; and not all children must stay connected to machines intended to support vital signs as they die. Everyday throughout the world, in the home and in the hospital, families and clinicians provide care to dying children in accordance with these principles."

(Arch Pediatr Adolesc Med. 2005; 159:889-891. Available pre-embargo to the media at www.jamamedia.org.)

For more information, contact JAMA/Archives Media Relations at 312-464-JAMA (5262) or email mediarelations@jama-archives.org.

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