NICE and nice tweets!

Wow! Now this is a real treat to return home from a night session with GP OOH and realise I have unintentionally stirred up a controversy . This is certainly a very humbling experience for me and shows both the power and limitations of social media, particularly twitter.

@amcunningham ‘s suggestion is certainly very helpful. A blog would certainly have helped to clarify the reason for my rather random tweet.

So here’s what happened. Recent NICE guidance on CA 125 resulted in unsurprising headlines like “The £20 blood test that could have shown my bloating was cancer

@amcunningham has tweeted some very thought provoking observations on this. In its information for people NICE suggests that GPs should offer this test to women with some specific symptoms, but offers GPs no support to help make a shared decision with their patients. Hidden in the main guidance are facts like “… around 1 in every 100 women referred to secondary care with positive serum CA125 or ultrasound would have ovarian cancer” and “… around 1 in every 2,000 women with negative tests would turn out to have ovarian cancer.” I like many other feel this is very important and should get equal prominence, if not more.
This led me to check other public information leaflets by NICE. And that’s how I meandered into the sarcoma guidance published in 2006. Here NICE correctly states that “Good communication between patients, their families and healthcare professionals is important: it can promote better care and support and reduce stress for patients and families.” NICE says that it “believes that the key to improving care is rapid referral for assessment, diagnosis and, if sarcoma is diagnosed, treatment at a specialist sarcoma treatment centre.”
So this leads to the hypothetical lady in my tweet “37 y o lady presents w/ well defined swelling over leg >1 mo; mild pain. No trauma. No significant past hx. Please suggest work up in #1care “. It probably wouldn’t have crossed my mind, certainly not at the first encounter, to suspect a sarcoma. This is my deficiency that I hope to address. So what does NICE suggest to the hapless primary care provider like myself?
On page 27 of the main guidance it acknowledges that GPs need a reliable source of information and that there is a need to increase awareness of sarcoma. Soft tissue sarcoma can be very difficult to differentiate clinically from benign tumours. According to NICE, features suggestive of malignancy are:
  • lump > 5 cm
  • lump increasing in size
  • lump deep to fascia
  • pain
Anyone with a possible sarcoma should be referred to diagnostic clinic for biopsy to be seen with in 2 weeks.
I have never been involved in the diagnosis of sarcoma and hope that it remains so. But I have certainly seen people undergoing mutilating surgeries and dying from it. There is much good in NICE guidances. I only wish that they were more user friendly.
Thank you for the attention and look forward to your criticisms.

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Filed under NICE, Shared decision making

Discussing options at the end of life

Atul Gawande has this wonderful piece Letting Go in the New Yorker, a must read for any doctor. Many have commented on how beautifully it is written, on how lyrical and memorable it is here and here. Dealing with death and dying is not easy for anybody, no less for a doctor. The narrative is compelling and the advice from Dr Susan Block revealing. I copy it here but would strongly recommend reading the whole article.

I spoke to Dr. Susan Block, a palliative-care specialist at my hospital who has had thousands of these difficult conversations and is a nationally recognized pioneer in training doctors and others in managing end-of-life issues with patients and their families. “You have to understand,” Block told me. “A family meeting is a procedure, and it requires no less skill than performing an operation.”

One basic mistake is conceptual. For doctors, the primary purpose of a discussion about terminal illness is to determine what people want—whether they want chemo or not, whether they want to be resuscitated or not, whether they want hospice or not. They focus on laying out the facts and the options. But that’s a mistake, Block said.

“A large part of the task is helping people negotiate the overwhelming anxiety—anxiety about death, anxiety about suffering, anxiety about loved ones, anxiety about finances,” she explained. “There are many worries and real terrors.” No one conversation can address them all. Arriving at an acceptance of one’s mortality and a clear understanding of the limits and the possibilities of medicine is a process, not an epiphany.

There is no single way to take people with terminal illness through the process, but, according to Block, there are some rules. You sit down. You make time. You’re not determining whether they want treatment X versus Y. You’re trying to learn what’s most important to them under the circumstances—so that you can provide information and advice on the approach that gives them the best chance of achieving it. This requires as much listening as talking. If you are talking more than half of the time, Block says, you’re talking too much.

The words you use matter. According to experts, you shouldn’t say, “I’m sorry things turned out this way,” for example. It can sound like pity. You should say, “I wish things were different.” You don’t ask, “What do you want when you are dying?” You ask, “If time becomes short, what is most important to you?”

Block has a list of items that she aims to cover with terminal patients in the time before decisions have to be made: what they understand their prognosis to be; what their concerns are about what lies ahead; whom they want to make decisions when they can’t; how they want to spend their time as options become limited; what kinds of trade-offs they are willing to make.

Agree with you Dr Gawande, understanding the limits and possibilities of medicine is a process, not an epiphany.

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Filed under Palliative care