Chaplain Jeanne M. Tessier, M.A., M.A.P.T., on allowing children their voice

Healthcare and the Rights of Children

"In all actions concerning children, whether undertaken by public or private social welfare institutions, courts of law, administrative authorities or legislative bodies, the best interests of the child shall be a primary consideration."
United Nations High Commission for Human Rights,
2 September, 1990, page 3.[1]

In 1871, Mary Ellen Wilson was discovered by Etta Angell Wheeler, a social worker in New York City, where she lived with foster parents who beat her, starved her, and kept her locked up. There were no local, state or federal laws protecting children from abuse. Local authorities considered such things "family matters."

Lacking any other avenue of protection for the child, Wheeler turned to the Society for the Prevention of Cruelty to Animals (SPCA). She convinced the SPCA that, as a human animal, the child deserved their protection. The case, tried with a lawyer provided by the SPCA defending the child, was successful.[2] In U.S. history, animals were protected before children.

It wasn't until the 1960s that laws specifically prohibiting child abuse became common in the United States. Such protection laws are still nonexistent in many parts of the world. Meanwhile, protection of the rights of children is virtually nonexistent around the world, including in the U.S. and in many hospitals dedicated to their treatment.

Dr. Janusz Korczak spoke passionately for the rights of children as he cared for institutionalized orphans in Poland under the Nazi regime. Among his writings are these words: "Children are not the people of tomorrow, but people today. They are entitled to be taken seriously. They have a right to be treated by adults with courtesy and respect, as equals. [3] The writer and theologian Dietrich Bonhoeffer, argued that "The test of the morality of a society is what it does for its children."[4] Perhaps, after the words "does for" in Bonhoeffer's quote, we could add "and to."

At the children's hospital where I work, I've met children who were beaten, shaken, neglected, abandoned, permanently brain-injured, abused, and/or killed by adults whose responsibility it was to care for them. These are terrible wrongs, my medical colleagues agree, and are often quick to judge those thought to be the perpetrators of these acts of violence. (I understand the impulse.) But regarding not just the protection but the rights of children, especially their rights to have a voice in how they live and die, health care institutions, medical personnel and parents often conspire, through silence, deception, fear, misunderstanding, misguided hope, and paralysis, to hide the truths of their own bodies from the young and to deny them the right to be their own persons in many ways.

Adult patients have the right to know what is happening in their own bodies and to consent to treatment. Most children are given neither information nor the opportunity to give consent for treatment for their life-long illnesses, even when they are old enough to wed and to vote. Most often, children in hospitals have no voice in the decision-making about their care. Their bodies and medical care are governed exclusively by the grownups that surround them. Often, too, that governance and decision-making regarding the child's body is viewed by persons outside the decision-making network, especially chaplains and nurses, as futile and, in their words, "unnecessary torture."

Routinely, parents and physicians insist on treatments that the children do not want and which have a very small chance, or no chance at all, of affecting a cure. A seven-year old girl, for example, who'd already lived through two excruciating and unsuccessful bone marrow transplants, was subjected to a third, even though her physicians offered a less than 5% chance that it would help and a much higher chance that it would shorten her life and make her life's end a misery. This child begged her mother not to make her go through the transplant process again, but her plea was ignored. As a result, this child died in a hospital ICU, ventilated and unable to communicate. She was denied the right to complete her own life's work, to say her goodbyes, and to die in peace.

Every day, actions like these occur to children in hospitals. Children are routinely denied even a voice, much less appropriate control, over the course of their own lives and deaths. Care conferences, at which parents, nurses, and others gather to discuss treatment options, involve many people, but, most often, not the child. Their inclusion is seldom even considered, and when it is suggested, many are surprised and some are appalled.

Many parents insist that their children be told nothing about what is happening in their own bodies, and medical staff routinely support these harmful parental decisions. A child with cancer named Benjamin told medical anthropologist Myra Bluebond-Langner, "The ones who tell me [the truth] are my friends."[5] A father regrets that, "My last words to my son were a lie."[6] How is it that medical institutions and cultures can accept the rightness of this denial and deceit? Adults have been granted their rights to information and meaningful participation in their treatment; it is time to extend these rights to children.

Children understand far more than we know. Bluebond-Langner, in The Private Worlds of Dying Children, eloquently described the creative and collaborative strategies employed by children on a hospital oncology unit to learn about their own and each other's conditions, in spite of the concerted efforts of parents and staff alike to maintain a conspiracy of silence.[7] Even if they don't understand all the words we grownups use, children understand and are grateful when someone lovingly and honestly explains what is happening to them and why. They know painful actions are sometimes necessary to restore their health. They also know when their own bodies are not getting better. They deserve to have a voice in their own care. Pediatric physician Billy F. Andrews eloquently expressed this need in his self-published "The Children's Bill of Rights" in 1968:

We hold these truths to be self-evident... That the personhood of each child be fully appreciated and that each be informed of all matters including health as they grow in intellect and capability; and that they learn to be involved, as maturity allows, and to participate in all decisions concerning their well-being....
The Children's Bill of Rights, Billy F. Andrews, M.D.,
May 19, 1968, Louisville KY

Dying children, just like dying adults, need to be given time and space to complete the work of their lives, whether that means reading a favorite story, going home to pet their dog, or, making a beaded necklace as a farewell gift to Mom. Children deserve to know when they are dying and to be involved in deciding how they'll spend their last days. They deserve full status as human beings, in hospitals and in their own homes.

It is time to grant children the love, protection, truth and voice that each of us seeks in our own lives. Children's hospitals and chaplains are in a unique position to advocate for the empowerment of children to their parents and before legal bodies. When parents bring their children to us for care, hospital cultures can model and teach respect for, the dignity of, and the right to truth and to a voice in their own lives and care of the world's children. It is time we begin.

Footnotes:

[1] http://www.unhchr.ch/html/menu3/b/k2crc.htm

[2] http://everything2.com/index.pl?node_id=1320794

[3] http://korczak.com/Biography/kap-0.htm

[4] http://www.quoteworld.org/authors/dietrich_bonhoeffer

[5] Myra Bluebond-Langner, The Private Worlds of Dying Children. Princeton NJ: Princeton University Press, 1978, p. 188.

[6] A. Goldman, ed. Care of the Dying Child. Oxford: Oxford University Press. As quoted in When Children Die. Washington DC: National Academy Press, 2003, p. 121.

[7] op.cit.

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