Identity in illness
When illness erases identity, a name restores it. Being recognised protects dignity, even at the end of life
Identity is easily obscured in illness. Personhood is soluble in patienthood, writes palliative care leader Dr Harvey Max Chochinov. I’ve nursed “the cabbage in bed 4” (referring to coronary artery bypass grafting, shortened to CABG and pronounced cabbage) and “the valve in bed 3”. In hospital, numbers replace names in the interests of data protection but at the expense of engagement. “What you have” can become more important than “who you are”, with one physician wanting to hang a sign over his bed reading “P.I.P. – Previously Important Person”, so desperate was he to reaffirm a sense of self in his sickness.
In his blog for the British Medical Journal, GP John Launer wonders why “wearing a hospital gown and lying horizontally demotes a person from being a worthy member of the human race to being an object with no entitlement to be noticed, let alone greeted”, feeling like a piece of furniture rather than a living, breathing equal. He says that we should all #sayhellotopatients, in a campaign building on that inspired by the late geriatrician Kate Granger. She led the #hellomynameis initiative, which called for hospital staff to introduce themselves to patients by name.
The desire to be known and nurtured is a fundamental part of our human nature; we seek a sense of being seen and supported. “Feeling like an outsider can harm us,” writes Professor of psychology Geoffrey L. Cohen. “We are exquisitely attuned to whether or not we belong in our group, with our tribe, with our kin, and that includes our fictive kin…..And it’s that fundamental concern about belonging to a larger group, being accepted in that group and having something to contribute to that group that motivates so much of our day-to-day thought, feeling and action.” Could our recovery rest on feeling received? Might hospital stays be shortened when we feel seen?
Whilst a hello can allow the edges of an identity to emerge out of invisibility, a name shows that someone is known (somewhat) and noticed. Starting out in a nursing home and knowing no-one by name is difficult for the new nurse. Residents are, by necessity, at first defined by diagnoses and drugs, but soon, I might be befriending a name that once skated for England as I bandage her now frail legs. I’m softly saying a name to orientate a resident with dementia, and I’m learning, for each and every name, just what matters most. Trust is built, value ascribed. The best nursing handovers are when each resident is referred to by name, with insights shared, however small, rather than attention being drawn only to those names (or numbers) with immediate medical needs to meet.
A name tells much about a person’s identity, heritage and self-worth. “The most important anchorage to our self-identity throughout life remains our own name,” wrote Gordon Allport, one of the founders of personality psychology, in 1961. “Good name in man and woman, dear my lord, Is the immediate jewel of their souls,” wrote Shakespeare in Othello, continuing:
Who steals my purse steals trash; ’tis something, nothing;
’twas mine, ’tis his, and has been slave to thousands;
But he that filches from me my good name
Robs me of that which not enriches him,
And makes me poor indeed.”
Disease may diminish dignity and affect autonomy and ability, but a need for nursing care should never erase a name. #CallMe or Call Me Because Names Matter is a campaign to ensure that people are addressed by the name they prefer every time, everywhere in healthcare. Allowing patients to express the name they would like to be known by, storing it digitally and printing it on their wristband, restores something of personhood to patienthood. #CallMe is the cornerstone of so-called person-centred care, and is much needed because too often mistakes are made, sometimes with devastating effects. I nursed a lady in the dying weeks of her life, and through a difficult death, alone with her as she breathed her last since she had no family. Only after the death did I learn from her executor that she was known by her middle name, and never by the name that I had used so often.
For some patients though there simply is no name; they are known by no-one, unnamed and unclaimed in hospital beds across the world. In a heart-rending article for the LA Times, staff writer Corinne Purtill describes the desperate search for identity for patients without identification, unable to say their name since they are unconscious, incapacitated or simply too ill. Care is compromised when nothing is known about a patient’s medical history, their medications or their allergies; they become ‘hostage in the hospital’, a number in a nursing home, bed blockers who don’t belong. Saddest of all is when these people die as strangers – something that I have seen and never forgotten.
I met the man with no name as I arrived for a care home shift early one morning. I was never told how or why he came to be with us. He was a man so swollen that it took two staff to move each leg to reposition him in the bed. He was struggling for every breath, and I could see that he had chest pain. His words were French, in an unusual accent, distorted by delirium, punctuated by pain. Paramedics were called, the man went to hospital and returned a few hours later and died with us. I felt his fear, I mourned his loss. He had seen so many faces in his last few hours, yet none had known him, held him, named him or claimed him. But, perhaps, behind the seen, One whom I had not seen had seen him, and knew his name. I recalled some beautiful words from the prophet Isaiah, speaking God’s words into such a time as this, “I will not forget you. See, I have engraved you on the palms of my hands.”
Hymnwriters across the ages have been taken by the idea that we are God’s tattoo. “My name is graven on his hands, My name is written on his heart,” wrote Charitie Lees Bancroft. “My name from the palms of his hands eternity will not erase,” wrote Augustus Toplady. Nineteenth century preacher Charles Spurgeon lifts his eyes from ink-stained skin to starry skies when assuring himself that we are known by name to the uttermost.
“He who counts the stars and calls them by their names, is in no danger of forgetting His own children. He knows your case as thoroughly as if you were the only creature He ever made, or the only saint He ever loved”.
That God knows our name changes everything. It did for Mary Magdalene, one of Jesus’ closest disciples, on the first Easter Day. Grief-stricken at his death, bewildered by his missing body, and by two angels dressed in white, Mary assumed that the man she then met was the gardener – until he spoke one word - her name. This alone told her it was her teacher Jesus, risen from the dead.
Centuries before Mary was another woman in the Bible who met an angel. Abandoned and abused, Hagar was fleeing. She ended up giving God a name—El Roi, “the God who sees me”, because she knew that God saw her and knew her name. And that to her, in a desert of despair, mattered more than anything.