We’ve all been there: you spend weeks stressing over an upcoming appointment with your medical team – but you walk out feeling like you forgot to ask three of the four Very Important Questions you had and you’re not sure you made the most of the precious minutes you were allocated. While at Shine we’re used to seeing things from the patient’s point of view, we thought it might be useful to hear from someone on the other side of the table – what do doctors think about making sure those stressful appointments go well?
We were very happy that Richard Simcock, who is a Consultant Clinical Oncologist at the Sussex Cancer Centre, took on our blog challenge. In the first of two blogs, he shares some of advice about getting the most out of your face-to-face meetings with your oncologist. Please do share – or let us know if you think he’s missed anything!
As a Consultant Oncologist, a large part of my week is spent in clinics where I talk and listen. I have a schedule that averages around 40 appointments a week. Visits are listed between 20-40 minutes but can range from 5-90 minutes and more. There’s a lot to get through in this short amount of time. In this environment, it’s easy to forget that a patient may have been waiting days, weeks, or even months for this conversation. The conversation itself is not evenly balanced: on one side is a healthcare professional under time pressure but with (hopefully) the answers and on the other, a patient with much on their mind and the greatest possible personal interest in the outcome. If this weren’t difficult enough, there’s the extra complication of a whole new language. Here is a place where ‘stage’ has nothing to do with actors, ‘progression’ is a bad thing, ‘negative’ nodes are a positive and the drug names seem deliberately difficult.
It’s not surprising then that many patients find clinic meetings unhelpful and sometimes a source of frustration and even anxiety.
Lots of things can conspire to make it more difficult (such as time pressure, or bad news), but there are ways in which you can be surer that a consultation will be effective and useful for you.
In the next two blog posts, I’ll take you through a list of things which I think are helpful. First up: four ways to prepare for the consultation.
1. List your questions
Memory is a fickle thing – that essential question that popped into your head uninvited at 3am is likely to be difficult to recall by 9am, and absolutely missing without trace by the time your appointment comes around. The question that was on the tip of your tongue may be kicked to a distant corner of your brain if the doctor starts asking about your bowels. Don’t take the risk of forgetting an important question: write a list.
A doctor will not be irritated by a list. A careful set of questions can be really helpful in a consultation and helps manage time and concerns effectively. A list avoids the inconvenience of ‘oh, I just remembered one last thing’ (some people can manage to have multiple and separate ‘one last things’). More inconvenient still is to have to contact the patient again days later because ‘they forgot to ask….’ This is really time-consuming for everybody.
I mention lists of questions first – because so should you.
Introduce your questions early to help plan the time: ‘I know that you need to go through some things with me today, but I also have some questions I’ve written down. Is it OK if I tell you what these are at the beginning?’
Many doctors will prefer to know what the questions are at the outset as they may be able to answer them in the course of their usual conversation.
Try to order your list: are these questions about a clarification, current treatment, or what happens next? Grouping helps to deal with them efficiently. Also try to think what priority these questions have – particularly if you have lots. In a time-sensitive situation and with a list of 30 questions, it may be reasonable for a doctor to ask ‘which of these are the most important for us to deal with today?’
2. Bring someone
It isn’t always possible to have someone with you in clinic, but it can be really helpful. It’s too easy to end up in a consultation somewhere very different from where you expected to be (after bad news, for example). A friend or relative is likely to be calmer and can remind you of important details. They can also act as your secretary, as you will see.
You wrote down the questions, so shouldn’t you record the answers? The answer is definitely ‘yes’ (and you shouldn’t need to write that down). You can’t remember everything that is said no matter how hard you try. The average brain can probably only keep around four things at once in it, for around 30 seconds, and 40–80% of medical information is forgotten immediately after a consultation.
You don’t need to come to your appointment with a stack of notebooks and leave with writer’s cramp – it can be unhelpful for patients to write their own notes. If you’re trying to capture every word, scribbling furiously like the last five minutes of your school English exam, you will miss details. Bring someone who can take notes while you focus on what’s being said.
Less stressful than writing is recording. An audio recording of the consultation is the perfect way to ensure that everything is captured, and nothing is forgotten. In my department we have been recording consultations for patients since the 90s, using tapes and CDs. We have found it to be enormously helpful.
These days, almost everyone carries a portable recorder around in their phone. Both Android and iPhones/iPads have voice recorders as standard and they are easy to use. Make sure you know how it works before the clinic and test the settings – it’s a clinic, not a sound-check! Once recorded, these sound files can then be emailed anywhere, e.g. to a relative overseas.
There are also useful apps that allow you to add questions before the clinic and then record the answers for future reference. The OWise App is aimed at UK-based breast cancer patients, and the Cancer Net App is produced by the American Society of Clinical Oncology for all patients (although with a US bias in the information sections). These recordings are secure to your phone, which is a good way to protect privacy, but means they that cannot be shared as widely as simple sound files.
Finally, remember to ask your doctor before you record the meeting. Secretly recording a consultation is legally permissible but should be avoided – it suggests a significant breach of trust and a sense that doctor and patient are not on the same ‘team’.
Richard Simcock is a Consultant Clinical Oncologist at the Sussex Cancer Centre, with particular expertise in breast and head and neck cancer. He also works as a Consultant Medical Advisor for Macmillan Cancer Support.
He is a member of the National Cancer Research Network subgroup in psychosocial oncology and he is interested in research which improves the experience of people living with cancer. He was part of the James Lind Alliance Priority Setting Partnership that established the Top 10 priorities in research for people living with and beyond cancer.
He has been involved in communication skills training for healthcare professionals for many years, but still learns something new every week.
In his next blog post, Richard shares some more tips and tricks for the meeting itself, as well as some ideas for seeking further opinions and learning more about clinical trials.
Richard tweets as @BreastDocUK.