Florence’s Symptoms

One thing that often frustrates me is the difficulty in trying to understand my patient. This happens more frequently than I would like to it to be.  More worryingly it often passes under my radar of self-awareness. It can be hard to resist the relief of giving a “diagnostic label” and treat that label.

What follows is an extract from a book that has been a great solace and inspiration. After a hard day this has helped me recharge my soul and return to work the next day rejuvenated. Thankfully, most patients I see are nowhere as daunting as Florence. Or, may be they are and it is my lack of imagination that is the limiting factor.

I hope you will find it inspiring as well.

 

 

“I am Florence’s mother, I am a paranoid schizophrenic and she is too. This is her husband, whom I despise. What do you mean by telling Florence she cannot see another doctor?”

Florence’s list of symptoms by the end of sixth week of visits included:

Headaches

Double vision

Itching ear canals

Deep pain in her throat

Shortness of breath

A dull chest pain

Fullness after eating

Pain with menses

Burning on urination

Difficulty urinating

Painful

Bowel movements

Constipation

Difficulty swallowing

Pain on swallowing

Aching lower legs, arms, thighs, and shoulders

Periodic nausea

Dark urine

Painful intercourse

Irregular menses

Crawling sensations under the skin of her face

Intolerance to several foods

Dizzy spells

Spots in her field of vision

Abdominal swelling

Swelling of her hands and feet

Red blotches on her neck

Hair falling out

Weak spells but no loss of consciousness

A feeling of impending doom

Sensations of being hot and cold

Tingling sensations in her legs

Decreases in visual acuity that would come and go

Episodes of severe abdominal pains

Loss of energy and tired feelings

Feeling sick all over

She told me early that she was absolutely convinced that she had a very rare disease that was beyond medical science. I…kept telling her, “I do not know what is wrong with you…yet.”

I never told her that “nothing was wrong” with her. I also resisted the common course of telling such a patient that the problem was “all in your head.”

There were at least two other prevailing strategies for dealing with patients with many symptoms. The, first, and the most dangerous, was to make a diagnostic error and assign a false diagnosis to the patient. The other common way of dealing with these patients was to make up an innocuous diagnosis and assign it to them. What I was attempting with Florence was to abandon all these common approaches, stay completely honest, and see where it led.

I now had a very long list of diseases I knew she did not have, and in some sessions, I would read the list very slowly to her. I would go on and on in boring details, dragging out my list of absent diseases.

Then one day as I was going down the list of diseases I knew she did not have, she started to laugh. She laughed, and laughed until her eyes were watering. I waited. After she collected herself, she said, “Okay, this is getting ridiculous, it’s ludicrous, that’s what it is. It’s ridiculous.” She looked very puzzled and sat there saying nothing, staring out of the window.

I must have waited ten minutes. I could hear Sapira in my mind’s ear. “Hold out…hold out…use pauses; let the patient speak first whenever possible.” it was like holding my breath too long under water. Then she said, with some hesitation, “I need to think. I’ll see you next time,” and she left. This occurred at the end of ninth month.

The next time she came in, she looked very different from any time before. “What do you think you have?” I asked.

“I think I have lice under the skin of my body, and I know they are eating my hair follicles.” She blushed and looked embarrassed.

I asked her what test she thought I should do to prove the diagnosis right or wrong. She went on to tell me that she wanted me to biopsy her skin and find lice.

“What else might convince you that lice infestation was the one and only disease that you have or would convince you that you do not have lice? What can I do that would do that for you?”

She thought for several minutes and said, “Treat me for lice and I will be satisfied.”

After much thinking and soul searching, I came to a decision. I had pharmacist prepare a very dilute solution of Qwell lotion. On the next visit, I wrote her the one and only prescription I had written for her in the nine months I had been seeing her. I suggested she apply the lotion to her whole body twice daily for ten days. I did not want her to miss a spot, so I spent some time telling her exactly how she should apply the liquid. I put myself into whatever mental gear I thought might increase the potency of the placebo, if a placebo was going to work here.

She smiled as I handed the prescription to her, and then she said, “But you do know, don’t you, that you must treat again in two weeks to kill the eggs that hatch after the first treatment?”

Florence returned with her husband. Both were all smiles. She looked like an entirely different person – confident and very outgoing. She often deferred to her husband, who thanked me again and again.

Both talked about their future. He was going to go to graduate school, in geology, I believe. She would finish her Ph.D. In history and had a job lined up with the university library research department.

We did not talk of any symptom nor did I ask Florence how she felt.

Adapted from:

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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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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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