Humanising Healthcare
“Dying gives you a freedom to speak your mind.” So said inspirational geriatrician Dr Kate Granger, who died of cancer on July 23 at the age of 34. Granger was diagnosed with a very rare sarcoma (desmoplastic small-round-cell tumour) in 2011, when her median life expectancy was just 14 months and yet she lived for nearly 5 years. Even more extraordinary was her desire while dying to improve the NHS.
Granger’s first job on qualifying as a doctor was in Dewsbury hospital, working for a wise diabetologist called Dr Kemp who told her: “Being a physician is about painting a picture. It’s not about ticking a box or following a protocol. And during the admission, you’re painting extra bits of the picture every day until you’ve got the full painting.” When she became a patient, she observed that while many of the staff took time to introduce themselves and get to know her, some of them didn’t. This was less out of callousness, more because some doctors struggle to know what to say to patients with terminal cancer, especially if they are also doctors.
As Granger put it; ‘I’ve been referred to, within earshot, as ‘bed seven’ and by several consultants as that girl with DSRCT. Within one sentence, I’m just reduced to somebody with a rare cancer, and nothing else. I’m much more than just a rare cancer, I’m a wife, a daughter, a doctor and an auntie. I like to play the flute, I’m an avid baker, and there are lots and lots of things about me that are more important.’ She launched a hugely influential ‘Hello My Name Is…’ campaign to emphasise the importance of the little things in humane healthcare – introductions, listening and just being there. Over 400,000 NHS staff put their name to her campaign, and even those who didn’t like being told to introduce themselves made sure they remembered to do so.
Politicians predictably boarded her bandwagon. On page 36 of the government’s response to the Francis inquiry, there’s a “#hello my name is” box. Jeremy Hunt mentioned it in a speech about continuity of care and treating patients as people, without asking Granger’s permission. On July 19, she received a letter from Downing Street which began, “Dear Kate, My name is Theresa and I took over from David Cameron as PM last week.” She died just four days later.
Granger raised £250,000 for Yorkshire cancer centre before she died, but she was no political soft touch, campaigning for her junior doctor colleagues and asserting herself as a patient. She would get particularly annoyed if her drugs were changed without her involvement and consent. In an email to MD, she gave this advice for patients: ‘Ask for a copy of all your letters. Do not let anything be written about you that you have not seen yourself. Make sure you understand what is happening to you. Be involved in decision-making and don’t let things just happen to you passively. Take an active role in your care and be part of the team looking after you. Keep a diary of major events in your illness. It allows you to give a rapid history to anyone that sees you with all the info they will need. Keep a list of your medicines with you. The power balance is very much in favour of the NHS and its staff, but patients and carers can redress this by thinking critically and demanding information.’
Granger’s advice about death was equally clear. ‘The most important first decision is “where?” Preferred place of death is rarely achieved in the UK and I think that’s because we don’t plan properly. It takes a lot of effort and preparation to die at home successfully. I personally think if it is someone’s wish to die at home and they have been diagnosed with an incurable condition, the planning for that event needs to start then. Patients and families need early conversations with health and social care professionals about what support and resources are available so that expectations are not dashed. Anticipatory medicines need to be in the house long before the final crisis.’
Granger chose to die in St Gemma’s hospice in Leeds. Her greatest legacy would be if Theresa and Jeremy would fight as hard as she did to properly fund an NHS that is humane and safe for patients and staff, and provides great palliative care and gentle deaths for all, not just the lucky minority.
There are further tributes to Kate Granger in both of MD’s Edinburgh Fringe shows