Do you have a chronic disease or a long term condition?

Adapted from BMJ 23rd Nov 19. A chronic problem with language by Dr Helen Salisbury

Helen is a GP in Oxford she writes…..

Some years ago I was told the term “chronic disease” had been replaced by “long term condition”. When I asked my non medical friends about it, they thought that both “chronic” and “acute” both meant “severe”.  My comment: whereas they mean something more like “long lasting” and “short lasting” to a doctor.

So a chronic disease sounds like one likely to harm or kill you, whereas a long term condition sounds like something you live with but not die from. As doctors now copy patients into their letters, then perhaps we need to be more responsive to their beliefs?

Impaired renal function, from natural ageing is one of the problems that has arisen from the misunderstanding of the term “chronic kidney disease”.  It can cause people real worry because they imagine that they are a candidate for dialysis or death, yet they are unlikely to be affected symptomatically, nor is it likely to hasten death. Heart failure is another term that causes a lot of distress.

Sometimes doctors need to be precise in their speech and letters to each other so we can’t abandon all technical language.  Copying clinic letters to patients is good practice, even if patients sometimes struggle to understand them completely, because they have a record of the consultation and a chance to clarify the decisions made.

Sometimes we could use more lay terms to reduce confusion. Abandoning “chronic disease” is a good start.

 

 

BMJ: Asking better questions in the diabetic clinic

Adapted from BMJ 24 Nov 18

Are you well controlled?

Judith Hendley writes:

I am a mum who has type one diabetes. It troubles me to be referred to as a “diabetic”. Although this doesn’t bother everyone, I feel that this reduces me to someone with diabetes and nothing more.

Once diagnosed you are referred to as a patient for evermore. No matter how healthy and active I am, I seem to have crossed an invisible line from the “healthy” to the “unhealthy”.  I don’t want assumptions made about me and I don’t want the first question I am asked to be about my most recent HbA1c result.

The language used by healthcare professionals, the media and others makes a big difference to how I feel about living with a long term condition.

Living with type one diabetes requires mental agility, resilience, stamina, perspective and a healthy sense of humour, so state of mind is everything and language plays a big part in that.

There are questions that particularly get on my nerves.

Instead of saying, “Do you suffer from diabetes?” it would be much better to simply ask, “Do you have diabetes?”

I am sometimes asked if I am “well controlled”. It makes me want to reply, “No. In fact you just can’t take me anywhere.”

I often think that health care professionals don’t realise how difficult keeping a consistent equilibrium with diabetes really is. I would like to be asked questions such as,

” How are things going with your diabetes.”

“Are you having any difficulties with your blood sugar at the moment?”

“Are you finding anything particularly challenging?”

Open, non judgemental questioning is best. “How are you feeling about your diabetes at the moment?” “What is most important to you right now?” “What ideas have you thought about for how you could handle that?”

I realise some people may think I’m being overly precious about language, but health care professionals would be seen as much more “on side” and they could still get all the relevant information they need, if they just minded how they phrase things to patients.

 

Why do some consultations go wrong and what can we do about it?

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One in seven consultations are described as difficult by the doctors doing them. Why this happens can be grouped into several categories: patient, doctor, disease and system. More than one factor may contribute in any consultation.

Patients can come across as uncooperative, hostile, demanding, disruptive and unpleasant. Of course the patient may think exactly the same thing about the doctor! Patients may have unrealistic expectations or be unwilling to take responsibility for their health.

Doctors may be in sub-optimal states even before the consultation has started. They can be hungry, angry, late or tired. Their personal lives may be a mess. Their personality may clash with the patients. They may have pre-conceived ideas about the patient which handicaps the consultation before the patient even opens their mouth.

Some conditions are particularly challenging to deal with. These include chronic pain, ill -defined diagnoses and those with little prospect of improvement. Straightforward conditions where there is a recognised pathway of management broadly understood by both doctor and patient are much easier to deal with.

Limited resources, finances, support, interruptions and particularly time pressures all contribute to the difficulties experienced by doctors.

Difficult interactions with patients can take up a disproportionate amount of the doctor’s time, resources and emotional energy. They can cause the doctor to feel stress, anxiety, anger and helplessness and can lead to a dislike of the patient and the use of avoidance strategies. All this compromises the doctor’s ability to provide good care and can lead to increased mistakes which are bad for both doctor and patient alike.

A difficult interaction makes both parties feel frustrated and dissatisfied and may result in a breakdown of trust. The patient is then likely to seek another doctor in the practice or at the hospital and this uses up more precious health care resources.

A doctor who stops listening to patients, argues, talks over them and interrupts them does nothing to get out of the downward spiral that occurs in these consultations. Instead, these other suggestions, which may be made by either doctor or patient can help set things right again.

The first thing to do is to recognise when these difficult consultations arise and instead of getting sucked into the “I’m right and you’re wrong” game, take a step back and try to say what the problem is.

A doctor may say, “ We both have very different view about how your symptoms should be investigated and that is causing some difficulty between us. Do you agree?”  A patient may say, “We both seem to have very different views about the optimal number of blood sugar tests that a diabetic needs to do. Do you agree?”

This approach names the elephant in the room and avoids casting blame, fun though that sometimes is. It externalises the problem from both the patient and the doctor and creates a sense of shared ownership. Verbalising the difficulty is the gateway to working towards a solution.

Sometimes a person who is coming across as angry and abusive may be highly anxious about for example a terminally ill partner.  A doctor can say,  “You seem to me to be very angry about this.  Tell me more about this.”  It is important to listen to what the patient says, because if the patient really feels that they have been heard they are likely to calm down.

Sometimes what the patient wants really is unreasonable. A doctor may have to be clear about what is and is not acceptable sometimes. It is useful for all members of the practice to have consistent rules regarding such things as prescribing or late appointments. The way to explain this could be, our practice has a policy about this matter and the policy is…..

Doctors and patients will often have different ideas on issues such as diagnosis, investigations, and management options. Sometimes there seems to be no common ground which is often the result of unrealistic expectations.  Dr Google and The Daily Mail may have something to do with this.  If both can strive to achieve some common ground difficulties usually diminish.

A solution focused process helps the patient feel included and that they are not being abandoned. Asking them to come up with different options can take some of the burden off of the doctor.

 

Adapted from article by Marika Davies, medico legal adviser, Medical Protection Society, London.

Published in BMJ 3 August 2013

Don’t be stuck for words on your holiday with Duolingo

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Duolingo is a free site that offers you easy to do chunks of language learning in your own time.

Going on holiday with diabetes, particularly if you use insulin, can be trickier than average, so a little basic language can help you a great deal if you need to see a doctor or visit a pharmacy.

Duolingo gives modules on all of the basics that you can cover in 5-20 minutes a day. You set your own learning goals. You can even compete with your friends.

Food, directions, feelings, sports and medical words and phrases are all covered, as indeed are many other topics. For more advanced learners tenses are covered in more depth towards the end of the course.

All European and Scandanavian languages are covered. So are Russian, Ukrainian, many Asian and African languages. You can even learn Esperanto and Klingon! (Well you never know…)

 

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