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Last week, Emily’s parents revisited our hospice to remember Emily and that strengthened my resolve to write this piece—to share Emily’s voice and to share the ways in which she was supported to use that voice to achieve spiritual peace at the end of her life.
Spirituality relates to issues of meaning, relationships and the world around a person. This may sometimes be expressed through religiosity but is very often unrelated to religious faith, instead relating in a wider sense to identity, purpose, significance and wonder (eg, the beauty of the world around them, a person’s meaning within the world, the purpose of life, etc). It is not hard to imagine how one’s spirituality may be challenged when facing death and dying.
In adult palliative medicine, four especially important thoughts at the end of life are described—namely being able to say ‘I love you’, ‘thank you’, ‘I forgive you’ and ‘forgive me’.1 Similar concepts apply for children but with contextual and developmental differences. Children and young people are more competent than people often assume in comprehending and participating in decisions about their own illness and mortality.2 3 However, it is also important that they have the support and permission of family and professionals to progress those key conversations.
Spiritual care for children and young people includes assessing for and recognising signs of spiritual distress (eg, anger, fear, questions about ‘why me?’, …
Contributors EH had the idea. NT reviewed the drafts and led on the delivery of much of this care, together with the wider team at Charlton Farm. Both EH and NT, as well as Emily’s parents, approved the final draft.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
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