I got to know Joseph * over a number of months. He was first admitted to hospital in April, when his bed overlooked the garden with trees in bud. As Spring turned to Summer he was readmitted, and when Autumn came he watched the leaves change colour and fall. Each time he was admitted he spent more time in hospital and less time at home, and we worried more about whether this admission might be his last.
Joseph had been diagnosed with Idiopathic Pulmonary Fibrosis, an incurable condition in which the lungs become progressively scarred, leading to breathlessness and functional decline. Like many patients with a chronic disease, he had opted for a coping strategy that focused on living, and trying to forget there was anything wrong. This meant that despite having symptoms for a number of years he had seldom seen a doctor, knew little about his disease or its’ likely trajectory, and had shared very little with his family.
Posted in Death
Tagged care, chronic disease, chronic sorrow, compassion, death, fear, grief, hope, identity, illness, living bereavement, living loss, NHS, patient
I love Christmas. But I occasionally find myself in a moment of loneliness in the midst of all the crowds and music and noise. When I see pictures of friends with their newborns, home just in time for Christmas; hear couples conspiring about the perfect present for each other; or catch the refrain of a song and am reminded that no-one is thinking “all I want for Christmas is you” the sparkle loses it’s shine. Being in the ever diminishing demographic of single 30-somethings can be lonely. But these moments are fleeting. I’m soon reminded of how much love surrounds me as my Mum calls to double check when my train is getting in, my brother texts to ask whether vegetarians eat gravy, and my friends email checking who is bringing the Gin at New Year. I know how lucky I am and how full of people my life is, and I was reminded of this on my last day of work before the Christmas holiday.
Ron* was a patient I had previously met in clinic. He had severe COPD and lung cancer for which he’d opted not to have treatment. He was admitted the week before Christmas with breathlessness and we were treating him for an infective exacerbation of COPD. We were fully staffed and the team had the ward under control so there was time to do what I wish we could do more often: sit and chat.
At work recently I felt like a broken record. “What’s their name?” I said again and again with increasing frustration as I received calls about patients who were referred to as “bed 3,” “side room 1,” and “bed 9.”
Of course, at times it is convenient and even desirable to omit a patient’s name in a conversation. It was suggested on Twitter that it may be better to overhear what ‘bed 9’ needs rather than ‘John Doe is ready for his haemorrhoidectomy,’ and in this case I agree! My worry is that in most cases there is no explicit intent to maintain confidentiality. Instead the convenience of referring to people by their bed number slips into routine communication. I have certainly been guilty of this myself. I worry that this is not merely disrespectful, but that it contributes to the dehumanising experience of being a patient, and negatively impacts on the doctor-patient relationship.
Posted in Life
Tagged care, dehumanisation, doctor, education, empathy, Health care, Healthcare, individual, medicine, NHS Change Day, partnership, patient, patient-centred, system