“Anna [Donald] has left a remarkable legacy to other patients like myself with advanced disease,” says Helen Owens, a patient with cancer, on the website Anna’s Adventure. Anna Donald, as many BMJ readers know, was a doctor, Rhode’s Scholar, and one of the founders of evidence based medicine who died of breast cancer last year aged 44. Her legacy comes in at least five forms: formal writings, including articles, books, and a column in the Health Services Journal; blogs in the BMJ as she approached death; intense memories for those of us fortunate enough to know her; and now a website and video. The beauty of such a legacy is there is something for everybody.
The website and the video were made by Anna together with Jessica Douglas-Henry, an Australian film maker, but Anna died before the project was finished. It’s thus been a challenge for Douglas-Henry to complete them, particularly as much of the filming was done when Anna was very sick and had less of the joie de vivre and humour that was her usual mode. The plan was to include much more on Anna’s life and work before she was sick, but the emphasis has come to be on her thoughts on advanced disease.
For me, her 24 blogs are the finest part of her legacy, and these are available to the whole world on the BMJ website at https://blogs.bmj.com/bmj/category/from-the-other-side/. Many of these were written when Anna was not horribly sick, and they are funny and moving as well as deeply insightful, bringing tales from a place that most of us have never yet been but are likely to arrive at some day.
Quotes from the blogs are used in the video, but it’s a pity that they have to be read by an actress. The video concentrates on the spiritual, using haunting music, powerful pictures of the beauty of rural Australia, and somewhat “new agey” graphics of rocks, vegetation, and what might have been cancer cells. Much of the video features Anna in the bush with her father, reflecting on how cancer can cause you to “unravel” and so force you to think about what matters most. Long interested in “mind body problems” but diverted by her career, Anna is brought back to her interest by her cancer and observes the complete inability of science to explain love and the power of meditation. She didn’t abandon rationality but became interested in its severe limitations.
Later in the video she is filmed in hospital and looks much sicker than I ever saw her. She talks of how much loss cancer causes and of the children she would have loved but will never have and how she is kept going by the people she loves, particularly by the thought that her death would mean that they would never be the same again. One 55 year old woman with metastatic breast cancer “described herself as cynical about patient’s journeys and not touchy feely…[but] she really liked the video. She said it was practical… people don’t like talking about death but it is part of life.”
The video will appeal to many, but it’s the website that will be most useful—both for those with cancer and for teaching medical students and others. The site is built around 26 video clips of about two minutes each of Anna talking on all aspects of having cancer— including conserving energy, living in the now, chemotherapy, dealing with pain, leaving loved ones behind, sleeping and dreaming, and doctors and nurses. Each clip has a short quote, allowing you to grasp quickly what is being covered—and so easily get what you want from the site.
Anna was a great talker, and these clips provide insights that are not easily found elsewhere. Few patients manage to talk with such unflinching directness, and, although, as Anna says, being a doctor gives you little insight into what it is to have cancer, it does allow her to talk in a way that will chime with medical students. Scott Murray, an Edinburgh GP with an interest in palliative care, describes on the site using the website with medical students and how it was “especially suitable…as they could imagine themselves being wildly successful like Anna but then cut off in their prime.”
Being a doctor also makes it easier for Anna to criticise doctors. I know that she and her family were hugely impressed with the care that she received, particularly at the end of her life, but even the best doctors can miss a lot. Doctors are preoccupied with the “big things,” but understanding the “small things” can make the difference between good and excellent care. One clip describes how nobody said whether she could drink while fasting for a particular procedure. In another clip she says: “I had my chemo yesterday and I am bloody furious with doctors for yet again forgetting that there is a drug called dexamethasone, it’s a steroid. I was supposed to be on it the day before yesterday… no one told me I should take it.”
Some have fretted that that the clips are too “confronting,” but most of those who have used the site have found the directness rewarding. One patient says: “I spent the afternoon today unable to leave Anna’s story and insights in spite of experiencing post-chemotherapy tiredness and pain from yesterday’s session.” Many will benefit from Anna’s impressive legacy.