Hospice

We’d like to refer you to the children’s hospice. The sentence lands. The parent hears hospice and the word expands inside the sentence until it fills the room, and everything else the professional is saying — about respite, about support, about the hydrotherapy pool — is muffled by the word, because the word has said the thing the parent has been trying not to hear, which is that someone with authority has looked at the child and seen a child who belongs in a building with that word on its sign. The parent may refuse the referral. Many do. The refusal is not denial. The refusal is a refusal of the word, a refusal to let the word attach itself to the child, a refusal to drive through the gate and accept what driving through the gate means. And what the parent does not yet know — what the word has prevented them from knowing — is that the place behind the gate is not what the word says it is. The place is warm. The place is full of children who are living, noisily, colourfully, emphatically living. The place has a messy play room and a music room and a garden. The place has staff who are laughing. The parent looks at the place and the place does not look like the word, and the not-looking is the beginning of a relationship the word nearly prevented. The word comes from the Latin hospitium: a place of hospitality, a guesthouse, a shelter for travellers. The root is hospes, which means both host and guest — the same word for both sides of the encounter, because the Latin understood that the relationship between the one who gives shelter and the one who receives it is not a hierarchy but a reciprocity. The same root gives hospital, hotel, hospitality, and hostile — the last because the stranger at the door might be either guest or enemy, and the word had to hold both possibilities. A hospice was, in its medieval usage, a place where pilgrims could rest on a long journey. The pilgrims were going somewhere. The hospice was not the destination. It was the stopping-place, the shelter along the route, the building that existed to make the journey bearable.

The modern hospice has inherited the word and reversed its meaning, because the modern hospice is, for many of the people who enter it, the last place. But the older meaning — shelter, rest, a place that makes the journey bearable — is not wrong. It is the truest thing the word still says. The modern hospice movement begins with Cicely Saunders. Saunders, a nurse, social worker, and later physician, founded St Christopher’s Hospice in London in 1967 and in doing so established the principles that would define palliative care as a discipline. The principles were: that dying people had needs the hospital system was not meeting; that pain could and should be controlled through proactive medication rather than reactive response; that the dying person was a whole person — a person with physical, emotional, social, and spiritual needs, not a collection of failing organs; and that the time between the end of curative treatment and the end of life was not a medical failure but a period of life that deserved its own care, its own expertise, its own vocabulary. Saunders’ concept of total pain — pain that encompassed physical suffering, psychological distress, social isolation, and spiritual anguish — was a direct challenge to a medical system that understood pain as a sensation to be treated rather than an experience to be heard. The hospice was the place where the hearing would happen — the place where the dying person would be received as the medieval hospice received the pilgrim: as a guest, with hospitality, with the understanding that the guest was on a journey and that the journey deserved respect.

Children’s hospices are different. This sentence is the beginning and the end of everything that needs to be said about them, and nothing that follows it is adequate to the difference, and the difference must be described anyway because the word hospice applies to both and the applying conflates what should not be conflated. The adult hospice is, in most cases, a place where people go to die. The adult hospice serves people in the final weeks or months of life. The adult’s relationship with the hospice is terminal in both senses: it is concerned with the end, and it ends. The children’s hospice is not primarily a place where children go to die. The children’s hospice is a place where children with life-limiting and life-threatening conditions go to live — to have respite, to receive symptom management, to access therapies, to use the hydrotherapy pool and the sensory room and the garden with the accessible swings, to be cared for by specialist nurses while their families sleep or go home or simply stop, for a night or a weekend, carrying what they have been carrying every hour of every day since the child was diagnosed. For many families, it is the only place where the child’s needs are understood without explanation, where the equipment is already there, where the staff know how to suction a tracheostomy and manage a seizure and recognise the particular quality of a particular child’s distress without the parent having to translate. The children’s hospice is, for many children, the best place they go. And the word hospice stands at the entrance, and the word means death, and the parent who drives through the gate for the first time drives through the word before they drive through the gate, and the driving-through is an act of courage the word does not deserve to demand.

The first children’s hospice in the world was Helen House, opened in Oxford in 1982 by Sister Frances Dominica. The founding story is a story about a specific child: Helen, who had a brain tumour and whose parents were exhausted by her care and needed a place where Helen could be looked after and they could rest. The story is individual before it is institutional, particular before it is general, and this is the children’s hospice movement’s founding grammar: it begins with the child, not the system. There are now over fifty children’s hospices in the United Kingdom, most of them run by charities, most of them funded primarily through donations, most of them receiving only a fraction of their operating costs from the NHS. The funding model is itself a statement about how the system values the children the hospices serve: these are children whose care the state has substantially outsourced to charity, whose specialist needs are met by organisations that must raise money from the public in order to provide what the public health system does not. The children’s hospice is, in this sense, an institutional expression of the gap between the child’s need and the state’s provision — a gap the charity fills with excellence and fills with resentment and fills with the annual cycle of fundraising that requires the charity to present disabled and dying children to the public in terms the public will respond to, and the terms the public responds to are the terms of the inspiration narrative, and the inspiration narrative is the price the children pay for the care the state does not fund.

The word does specific damage to the families of children with life-limiting conditions that are not immediately terminal. A life-limiting condition is a condition for which there is no reasonable hope of cure and from which the child is expected to die before adulthood. The definition is broad. It encompasses conditions with trajectories of months and conditions with trajectories of decades. A child diagnosed at birth with a life-limiting condition may live for two years or for twenty, and the span is not uncertainty in the medical sense — it is not that the prognosis is unclear. It is that the prognosis is: this child will die of this condition, and nobody knows when. The children’s hospice serves this child from diagnosis, which means the hospice enters the family’s life not at the end but at the beginning, not as the last stop but as a companion for the whole journey, and the journey may be long, and the word hospice is there for every year of it, and every year the word says death and the child is alive, and the word says ending and the child is beginning, and the word says final and the family is at the start of something that will be the longest, hardest, most important work of their lives, and the word is wrong about everything except the one thing the family cannot bear to think about, which is that the word will eventually be right, and the eventually is the space the family lives in, and the space is years, and the years are life, and the life is lived in the shadow of a word that cannot stop meaning what it means.

The children’s hospice also provides end-of-life care, and this is the thing the word was built for, and this is the thing the word gets right, and the getting-right is extraordinary, and the extraordinariness should be said. When the child’s condition deteriorates, when the trajectory steepens, when the conversations shift from management to comfort and from comfort to the end, the hospice becomes what the word says it is: a place of shelter at the end of a journey. The care the hospice provides in the final days is care that most families could not provide at home and that most hospitals cannot provide at all, because the hospital’s vocabulary is a vocabulary of intervention and the hospice’s vocabulary is a vocabulary of accompaniment, and the child who is dying needs accompaniment more than intervention, needs to be held more than treated, needs the pain controlled and the seizures managed and the room to be quiet and the parent’s hand to be there and the time to be allowed to pass at the pace it passes and nobody trying to accelerate or decelerate it but simply being in it, being present in the time that is left, and the being-present is the hospice’s skill, and the skill is not nothing, and the word hospice in this context is not wrong, and the not-wrongness should be honoured, because the word that is wrong for most of the child’s life is right at the end of it, and the rightness at the end is the word’s redemption and its cruelty, because the word was right all along, the word just arrived too early, and the too-early arriving is the word’s structural defect: it names the end at the beginning and asks the family to live with the naming for every year in between.

After the child dies, the hospice provides bereavement support. The family that has been coming to the hospice for years — for respite, for symptom management, for the hydrotherapy pool, for the staff who knew the child’s name and the child’s laugh and the child’s particular way of turning towards the window when the afternoon light came through — this family now comes for a different reason, or does not come, or cannot come, or comes and sits in the room where the child was and the child is not and the room is the same room and is not the same room because the child is not in it and the room was the child’s room and the room is now a room, and the parent is in the room, and the bereavement counsellor is in the room, and the word hospice has finally become what the word always said it was, which is a place associated with death, except the association is now a fact, and the fact is the thing the parent is living inside, and the parent is living inside the word as well as the building, and the word is not shelter any more. The word is the name of the place where the child’s life was held, and the place is still holding it, and the family is still connected to it, and the connection is the bereavement support and the memorial days and the sibling groups and the quiet knowledge that someone in this building remembers the child, and the remembering is something, and the something is not nothing, and the word hospice holds this too — holds the before and the during and the after in a single word that cannot hold it, that was never designed to hold it, that was designed for pilgrims stopping for the night on a journey to somewhere else, and the family’s journey is not to somewhere else. The family’s journey is to the place where the child was, and the child is not there, and the journey does not end, and the hospice is the only word that knows this, and the word is not enough, and nothing is enough, and the word stays anyway, on the sign by the gate, doing what the word has always done, which is to offer shelter to people on a journey the word cannot complete.

Hospitium: a place of shelter for travellers. Hospes: both host and guest. The children’s hospice is the word’s truest expression and the word’s deepest betrayal. The word promises hospitality, and the hospice delivers it, and the hospitality is real, and the hospitality is extraordinary, and the hospitality exists because the state has not provided what the state should provide, and the charity has filled the gap, and the gap is filled with excellence, and the excellence is funded by donations, and the donations are raised by an industry that must present dying children to a public that is moved by dying children, and the movement is called inspiration, and the inspiration funds the hospice, and the hospice cares for the child, and the child is a guest in a building that exists because the child is dying, and the child may not be dying yet, may not die for years, but the word is on the building and the word means dying, and the child lives inside the word and inside the building and inside the contradiction, and the contradiction is: this is the best place the child goes, and this is the place that means the child is going to die, and both of these are true, and the word must hold them both, and the word cannot, and the word does, and the holding is the word’s last act of hospitality, offered to a family that needs the shelter more than it needs the word to make sense.

Extract from my book Keywords: A Vocabulary of Child Disability. Available from old bookstores, both online and offline.

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