The emerging field of pediatric palliative care recommends that terminally ill children and their parents engage in compassionate and honest communication about the end of life.1–5 Extensive clinical experience and research attest that young patients often derive comfort from asking questions, sharing their hopes and fears, and receiving loving reassurance.6 Nevertheless, these conversations can be extremely challenging, both for parents and clinicians. Obstacles to communication include uncertainty about what to say, fear of distressing the child, and a concern that the young patient will “give up the fight.”7
A historical perspective on these difficult issues may prove illuminating. By analyzing 17th century diaries, letters, and medical texts, it is possible to piece together some of the conversations that took place between parents and their gravely ill children in the past. The ensuing discussions draw on my book, The Sick Child in Early Modern England, a study of the perception, treatment, and experience of childhood illness in the period from approximately 1580 to 1720.8 During this time, almost one-third of young people died before 15 years of age.5 Rather than shielding their offspring from these foreboding facts, parents encouraged their children to think about their own mortality. To this end, the young were taken into sick chambers to witness the final hours of relatives and neighbors. In the 1650s, 4-year-old John Sudlow from Middlesex was present at the death of his infant brother; seeing the little body “without breath, and not being able to speak or stir” made John “greatly concerned” and caused him to ask his parents “whether he must die too.” His parents answered truthfully.6 This early exposure to death might seem morbid, but parents’ intentions were benevolent: by making mortality familiar to children, they hoped to take the fear out of the unknown. It was part of the “preparation for death,” a religious process that was designed to help the Christian reach a state of peaceful acceptance, and even happiness, about dying.11
The preparation for death intensified once the child fell ill. Parents alerted their offspring to the likelihood of death by asking them if they were “willing to die.” This frank and simple question gave the child the opportunity to voice any anxieties or doubts, and to receive explanations and reassurances. In 1678, “as he lay in Bed very ill,” 5-year-old Joseph Scholding from Suffolk said to his mother, “Mother…I am thinking how my Soul shall get to Heaven when I die; my Legs cannot carry it, [because] the Worms shall eat them.” His mother “took up his Fingers, which were half dead,” and explained, “God will send his Angels, and they shall carry it to Heaven.”12 Joseph’s preoccupation with the Christian doctrine of salvation is typical of children from his era; society at this time was deeply religious. Church attendance was compulsory, and death and judgement were staple topics of sermons.
A more secular concern expressed by children was what would become of their belongings and pets. The law did not allow those aged <21 years to draw up a will, but children were nevertheless invited to make known their wishes regarding who should inherit their possessions. Sick of consumption in 1665, twelve-year-old Caleb Vernon from London bequeathed “all his toyes” to his little sisters Nancy and Betty. When he overheard Nancy asking, “Who shall have Caleb’s [pet] Bird when he is dead?” he told his father: “Father, I shall not think of dying yet, but if I do, I will give it to my Sister Betty, who hath none, for Nancy hath one already.”13 This example suggests that siblings as well as the dying child were encouraged to talk openly about death.
Children’s greatest fear was separation from their parents. In the 1670s, 6-year-old Jason Whitrow took his mother “by the hand, and said, ‘Mother, I shall dye, oh that you might dye with me, that we might both go to the Lord together.’”14 Parents sought to allay these anxieties by reassuring dying children that life after death would not be devoid of parental love: Jesus would take on the role of both mother and father. In 1661, when Mary Warren, aged 10 years, clasped her arms around her mother’s neck, her mother said, “Thou embracest me, but I trust thou art going to the embracings of the Lord Jesus.”15 Parents also reminded their children that they would eventually enjoy a blissful reunion in heaven (Fig 1). Through these conversations, children often came to feel resigned to death, and sometimes even expressed joy. In 1652, eleven-year-old Martha Hatfield from Yorkshire, sick of ‘spleen wind’, became “exceedingly rapt up with joy…laughing,” and was heard exclaiming, “I am now going to Heaven.”16
To a modern ear, these positive reactions to death seem scarcely credible. Admittedly, parents may have exaggerated their child’s happiness about heaven as a way to mitigate their own grief. However, when we consider 17th century attitudes to childhood, these responses begin to seem more plausible. Children enjoyed a special religious status at this time: they were thought to be especially beloved by God and capable of extraordinary faith.17 These ideas were rooted in the Biblical passage Matthew 18, verses 2–3:
And Jesus called a little child unto him, and…said, Verily I say unto you, Except you be converted, and become as little children, you shall not enter into the kingdom of heaven.
Adults’ expectations strongly influence children’s behavior, and therefore it is likely that children who were raised in environments that nurtured precocious spirituality may have sometimes been able to meet, and even surpass, these expectations. Besides, there was a powerful reason why death could be seen as desirable to children: namely, many had already suffered the death of a parent or sibling, and longed to see them again in paradise.18 In 1620, 10-year-old Cecilia D’Ewes fell ill of smallpox at boarding school in London; her mother had died a short time previously, and the girl therefore appeared not to mind dying but instead cried with relief, “I will go to my mother, I will see her; I shall shortly be with her.”19 Children’s relationships with their deceased siblings continued in their dreams. Tom Josselin from Essex, aged 11 years, had a “wonderful dreame” in 1643 that Jesus took him “up to heaven” to visit his deceased sister Mary. They flew “over a mountain and over the sea” to paradise, where they found angels “singing melodiously and praying all in white.”20 Tom’s vivid imagination of heaven, coupled with his desire to see his sister, made death seem attractive. Nevertheless, it would be wrong to romanticize death at this time; the flipside to the belief in heaven was hell, a place that caused nightmares rather than pleasant dreams.
What can we take away from this brief foray into the past? Parents in the 17th century loved their children, and sought to comfort them through talking. This conversation was probably far less difficult, however, in the early modern period because people were so much more certain about what happened after death. Perhaps part of the answer is to find a way to break the taboo surrounding death, so that over time, both adults and children are able to discuss it with less discomfort.21
My thanks are owed to the Wellcome Trust for generously funding my doctoral degree, upon which this research draws. I also thank the palliative care pediatricians, Dr Mary Devins and Dr Maeve O’Reilly, and the palliative care nurse, Valerie Jennings, for talking to me about the care of terminally ill children, and for sharing with me their valuable insights. They are based at Our Lady’s Children’s Hospital, Dublin, and Dr O’Reilly also works at St Luke’s Hospital, Dublin.
- Accepted May 8, 2015.
- Address correspondence to Hannah Newton, PhD, 15 Moorlands Close, Brockenhurst, Hampshire, United Kingdom, SO42 7QS. E-mail:
FINANCIAL DISCLOSURE: The author has indicated she has no financial relationships relevant to this article to disclose.
FUNDING: The article is based on doctoral research that was funded by the Wellcome Trust in 2006–2009 and conducted at the University of Exeter.
POTENTIAL CONFLICT OF INTEREST: The author has indicated she has no potential conflicts of interest to disclose.
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- Copyright © 2015 by the American Academy of Pediatrics