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Remembering The Doctor Who Tweeted Her Terminal Illness — And Changed Practice

Dr. Kate Granger in 2014 (The BMA/Flickr Creative Commons)
Dr. Kate Granger in 2014 (The BMA/Flickr Creative Commons)

Kate Granger was only 31 when she told me in an email, “I’m going to die in the next few months.”

"Hope you had a wonderful Christmas," she added a bit later. "Mine was just perfect."

Kate did not die as quickly as her bleak cancer prognosis led her to expect, and she pursued more aggressive treatment for her sarcoma than she thought she would.

There were more holidays to celebrate, more patients to meet and treat, a national movement to launch, little ones to become auntie to, letters to chemo to write, a queen and prime minister to pose beside, and a precious getaway or two with her husband.

All of it shared with a Twitter following that has reached 48,500. She would get a chuckle knowing her following has grown even posthumously.

But there are no more holidays for Kate. As wrong as the prognosis was in days, it was right about the result. Dead right. If that seems tasteless, Kate would have appreciated it. She might have tweeted it.

She was in hospice when she died on July 23. Or, as she called it, “exactly the right place.” Her nurses were “so lovely and incredibly responsive.” And, according to her husband, she died “peacefully and surrounded by loved ones.”

By now, you’ve noticed I’m calling her Kate, so I should explain. When we began our email exchange, Kate made clear she did not want to be known as Dr. Granger. On Twitter, she was @GrangerKate.

Names are especially important in Kate’s story, because names stand for a person, and medicine, especially when overburdened, has a knack for forgetting that. Kate will be remembered most succinctly by the Twitter hashtag #hellomynameis.

As a patient, Kate was shocked by an oncologist coldly informing her that her cancer was spreading, and later by hospital staff referring to her by bed number and diagnosis. But #hellomynameis was born the day an orderly named Brian introduced himself and offered a blanket. That simple act of kindness gave Kate a cause to champion in her time remaining -- humanizing medical care in Britain's National Health Service.

In her final weeks of life, she came up with a new hashtag: #deathbedlive.

Bluntly honest is one way Kate will be remembered. Also as darkly funny, endlessly compassionate and a fierce advocate for patients.

Much of Kate’s story was about the cancer she survived longer than expected, though that’s the last thing she’d want to be remembered for. Indeed, becoming known for symptoms by those “caring” for her is what inspired #hellomynameis in the first place.

That campaign, launched in 2013, would count among its supporters Queen Elizabeth, then-Prime Minister David Cameron, pop star Kylie Minogue, billionaire Richard Branson and, in Kate’s final days, Mickey Mouse. “TY @Disney,” her husband tweeted.

The #hellomynameis hashtag reportedly made more than a billion “impressions” on social media and has been adopted by more than 400,000 National Health Service employees.

Kate was in a great deal of pain toward the end. Suffering prompted her move into St. Gemma’s Hospice, where she died experiencing the compassionate care she long championed.

Then again, it wasn’t long at all. She was 34 when she died, so hers was not a long life, and her life as a physician was shorter still. Her impact, though, reached well beyond England — on her profession and how it perceives and treats patients, on care of the dying, on a government’s powerful influence on the adequacy of care, on the patient’s challenge of knowing when to say when, and on cancer care and her specialty, palliative care.

She recently reached a fund-raising goal of a quarter-million pounds for the Yorkshire Cancer Center.

Kate knew well that physicians devoted to compassionate care of the dying -- and outspoken about it -- walk a perilous path. When she publicly defended controversial guidelines for end-of-life care, she was “trolled” in the British press, as she put it.

But to truly grasp the empathy required of a great physician, she had to become a patient -- known not for her humanity but as a set of symptoms.

Our email exchange was inspired by a shared interest in the Liverpool Care Pathway for Dying Patients. The pathway was a set of guidelines for compassionate care so effective in hospice that they were rolled out widely in NHS hospitals -- alas, too widely, and too fast.

Care and staffing are inconsistent from setting to setting, and in some institutions the consequences were tragic, rendering the checklist for care a tick box for neglect.

Liverpool Care Pathway defenders became lightning rods for abuse. Kate was likened to Harold Shipman, the British physician and serial murderer. “I had to grow a very thick skin fast,” Kate wrote in an email.

Yet she fervently hoped more doctors -- palliative specialists, in particular -- would learn to speak up. Her profession, she said, needs a thick-skin transplant, especially when it comes to care of the dying.

“We should be much braver as a profession and put our heads above the parapet in the debate,” Kate wrote. “The public need to think about these issues. They need to be discussed in families. And the only way of really achieving that is to engage with the media.”

On Twitter, Kate engaged to the end. “I'm suffering too much at the moment,” she tweeted on July 7. “It’s just day after day of endless pain. I just can't take it.”

She thought about what she’d said, then tweeted again: “Please don't think the palliative care team aren't doing their best for me everyone. They've been amazing. It's just my symptoms are tricky.”

Her final tweet thanked all her Twitter followers for being part of her life. She had tweeted 12,500 times — enough to leave a lasting legacy, 140 characters at a time.

Paul C. McLean is the author of "Blood Lines: Fatherhood, faith and love in the time of stem cells."

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