Adnan*, who lives in the North West of England, has over the years had to make many decisions with doctors about his son. Adnan’s son is in his early 20s and has several serious conditions, is tube fed and breathes via a tracheostomy – a tube inserted into the windpipe.

These are often complex decisions because of the knock-on effects treatment for one condition may have on another condition. Adnan says that if you or someone you care for has a long term condition, you need to be prepared for regular and sometimes difficult discussions about health decisions.

Adnan himself has long term health problems: diabetes and a lung condition that causes a persistent cough and shortness of breath.

Be prepared

A number of things have helped Adnan make tough decisions. He thinks it’s helpful to do some research in advance, but still prioritising what the doctor says in the consultation.

Having someone with you who can listen and speak on your behalf if necessary is really important, especially if the conversation is likely to be difficult. This could be a family member, a friend, or another professional who you trust. This applies also in situations where you might need an interpreter; still take someone with you that knows you.

“You’ve got to make sure that the healthcare professional opposite you understands what you are saying and understands what your needs are, what your requirements are, and what your wishes are”

Practising shared decision making

Adnan says tools like Ask 3 Questions’ or BRAN (Benefits; Risks; Alternatives; [doing] Nothing) are really helpful and easy to remember.

Adnan thinks that doctors, especially GPs, should check in advance why the person is coming to see them and prompt the patient at the beginning of the consultation to tell them why they’re there.

“You can use that [decision making tool] in your own way and in your own language that you choose, but write questions down fpr when you go to your doctor and take a partner with you, they can have the questions there with you…this can help make the conversation better.”

Adnan’s tips for better shared decision making

For patients and carers

• Ask questions and write them down, no matter how silly they may seem
• Make a note of the names of the people you see and the treatment options they suggest; ask them to spell any words you are unfamiliar with
• Ask for more time and information to think about the decision if you are unsure about a decision.

For healthcare professionals

• Do not use jargon; clearly explain medical terms

*Name changed to protect privacy

Adnan's story is part of a project funded by the General Medical Council and published here with the GMC's permission.