If we want honest information, let’s ask for it
In a recent call with someone using our Peer Navigator service, a woman tearfully told me that she had a terminal condition. When she was first diagnosed two years ago she was not informed that it could become terminal. She added that the nurse told her ‘not to google it’. She followed the advice and now is unable to reconcile with the decline in her health and the truth about her prognosis.
The idea that a potentially serious condition was being communicated to someone without conveying the full gravity of the situation seems incredible to me. Was it because the consultant wanted to save their patient the agony of knowing the worst outcomes possible, or was it to save themselves from the discomfort of explaining something which could lead to a potentially upsetting and emotional conversation?
Bad news cannot be made better, but it can be made worse.
Whatever the reason, their approach seemed to have had a terrible impact on our caller who felt shocked and unprepared. Clearly, bad news cannot be made better, but it can be made worse.
Honesty in appointments
Consultants commonly meet patients for the first time when they are delivering ‘news’ to them. They often have little to no knowledge of the person, and therefore are unlikely to know what will and will not work for them with regards to communicating information. This conversation is made even more complex as people often differ with how much information (for example, on risks and possible outcomes) they want to know.
For patients too, having to ask about risks of a treatment (like chances of death or disability) is difficult, not least because they may not like the answer, but also because it can feel too personal to discuss with a relative stranger. Not having the right questions to ask because you don’t know enough about your diagnosis is yet another barrier to getting the information you need.
All of this makes these important conversations so much more challenging to navigate. So what onus is on the medical team to make sure they understand how much you want to know and then share information on the condition, the options and the likely outcomes?
It may be a cliché, but it seems honesty, from both the doctor and patient, can go a long way in making these conversations productive.
And what can we do as patients to feel better informed and more in control. It may be a cliché, but it seems honesty, from both the doctor and patient, can go a long way in making these conversations productive. So how can this be done?
Helpful things doctors can do
During an appointment, a doctor’s invitation to ask questions can help patients voice their concerns and anxieties. The act of listening to and answering these questions (and suggesting places of further support) are incredibly useful in ensuring that the patient feels supported and subsequently less anxious. A consultant once gave me the name of a charity which helps people with my condition and it was fantastic, giving me a credible source of information to allow me to do research of my own. You’d be surprised how many people aren’t aware of the expertise and support available from charities, or how to find them.
It is a well-documented fact that people retain very little of what is being said during appointments due to the high level of stress and anxiety that comes with receiving a new diagnosis, or bad news about test results and further treatment options. Consultants provide complicated information verbally, and this can often include condition names and treatment options, facts and figures of survival rates, and the oh not so helpful acronyms. To support patients well, it is helpful to check their understanding of what has been said, and offer to repeat anything that was not clear. And if there is an option to give all this information to the patient written down all the better — so often I leave appointments re-reading my scribbled notes and trying to decipher what was said.
Finally, it can take some time for patients to process the information they have been given in an appointment and often a lot of questions come to mind when you’re on your way home, or lying awake worrying that night. So providing a way for the patient to reach out with any questions they have after the appointment is very helpful.
Our responsibility as patients
As patients, we too bear some responsibility of honestly sharing our preferences, both of our priorities when making treatment decisions and how much information we want to receive. Recently I was supporting someone through our Peer Navigator service, the caller was preparing to meet his oncologist and mentioned that he wanted to have an open and honest conversation about his chances of survival and the likely course of his disease. I suggested that he say this upfront in his appointment, and explain his thinking so that the consultant felt comfortable sharing more realistic information about his situation.
Another way for you to prepare is by writing a list of questions you want to ask. It can help you think through your priorities beforehand, and can also be a good way to keep you on track during the appointment when there may be a lot of different information offered. Be sure to take a paper and pen along to write down as much as you can, and ask the doctor for the information in writing if possible.
Lastly, if they don’t offer, ask how you can contact them to ask follow up questions when they come to you later — because they will!
Getting prepared makes all the difference
When you are waiting for test results or news about your condition a consultation with a doctor can be a strange event — you want to get it out of the way as soon as possible, yet dread the appointment letter arriving in the post. The news in those appointments may not always be good, but preparing yourself to get the most out of the time with your consultant, so your concerns are addressed and doubts clarified, can help you maintain some control.