Her Name Was Kate Granger

Dr. Kate Granger died on Saturday, July 23, 2016. According to a tweet from Chris Pointon, her husband, she died “peacefully and surrounded by loved ones.” She was 34.

There is much to remember about Dr. Granger, who I never met in person but who participated in a series of occasional interviews with me, via email and social media, going back to 2012. We had a mutual interest in care of the dying and the doctor-patient relationship.

Kate, as she wished to be known, was not yet a full-fledged medical doctor when she received her terminal cancer diagnosis, but in her short medical career she was a fierce advocate for care of the dying and for teaching doctors to treat patients as people, not as symptoms. Notably, the latter was a lesson she learned, not in medical school, but as a cancer patient. She launched a national campaign in the United Kingdom known by the hashtag #hellomynameis, and counted queens and prime ministers among supporters.

In announcing her death on Twitter, fitting given her loyal following on social media, Pointon posted a lovely portrait of Kate.

Just prior, he had posted a photo of “another celeb supporting #helllomynameis.” The celeb was Mickey Mouse.

Hers was a royal following, indeed.

What follows is a version of my story from earlier this year on the WBUR  blog, Cognoscenti.

+++++++++++

“Forget funeral selfies. What are the ethics of tweeting a terminal illness?”

— Headline in The Guardian, Jan. 7, 2014

I did not expect to still be writing about Kate Granger in the present tense. I thought she would be dead by now. If that sounds unfeeling, well, she thought so, too. She said so in an email, and on Twitter. Many times.

Dr. Granger (“call me Kate”), diagnosed with an aggressive sarcoma nearly five years ago, began telling her story on Twitter in March 2012, to a smallish following. But a while before the writer Emma Gilbey Keller and her husband, former New York Times editor Bill Keller, came under fire for stories questioning another terminal cancer patient’s use of Twitter to tell her story, inspiring The Guardian headline, the audience for Kate’s mortal tale already was growing.

It is growing still: 42.4K as of April 7.

Kate didn’t post for nearly a week after writing, “feeling very down after this morning’s clinic visit. Just feel there is no hope for me anymore.” A chill ran down approximately 42.4K spines.

But not one of them really knows what to think. Following @GrangerKate has been a roller coaster ride and an emotional bait and switch. So often Kate’s tale of dying has become one of living, which may be her greatest gift. She is a marvel of revelation and self-motivation, and no small part of that has been her passion for being a medical doctor.

She wants to care for suffering humans. It is a profound calling. Her specialties are elder and palliative care, finding ways to somehow lessen the suffering.

And to share her own.

Around the time Kate started telling her story on Twitter, the American physician Ken Murray published an influential essay about the difference in ways of dying between physicians and patients. More than their patients, he wrote, doctors know when to say when.

This seemed true of Kate. “Never again,” she would write in a letter to chemo. But then she’d change her mind. This happened more than once.

A newlywed when diagnosed, she wanted more time with her husband. A newly minted doctor, she wanted more time with patients. Another round of chemo allowed her meet the queen, to write another book, to hold her niece for the first time. She launched a national movement in England, a product less of her training as a physician than her experience as a patient.

Being a patient gave her a view into an impersonal side of her profession she’d have preferred not to have, with rounding teams of doctors and medical students gathering around the bed of person reduced to a set of symptoms. This inspired the #hellomynameis name tag that has become something of a phenomenon throughout the National Health Service and elsewhere in the UK.

Scan the hashtag, or @PointonChris, and be amazed at the photos of who has adopted #Hellomynameis.

“I think you are right about productivity at the end of life,” Kate wrote in an email earlier this year. “I don’t have tomorrow so I have to do things today. When I’m having a bad day, then I tend to just push myself into action. I guess it all comes back to legacy for me. I want to make my mark on healthcare.

“Because of my illness, that is not going to be through a long, distinguished academic and clinical career; but it could be through improvement of culture and how we view patients now with the #hellomynameis campaign.”

The chemo ride consists of hopeful peaks and toxic depths, and more hopeful peaks if you’re lucky. Kate and her husband agreed that six months of good quality of life would be “worth it for suffering the distress of chemo.

“I know full well there will come a time when we won’t achieve the six months good time (chemo is becoming less and less effective with each course) and my baseline fitness will be declining,” Kate wrote.

“Making a choice not to have treatment in that setting will obviously be very difficult, but I think because we have been open, honest and logical about it, hopefully it will be easier to communicate our choices to family and friends.”

To all 42.4K of them, in 140 characters or less.

 

About paulcmclean

I'm a husband, father, and writer, which is another way of saying I have the best gig there is. I'm an accidental bioethicist, occasional children's chorus chaperone, a bit over the top in the Springsteen department, and have a daughter who was cured and a beagle with a story. Some call the beagle a rescue. What they don't realize is, I'm the rescue.
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