You have 15 minutes and the clock is ticking. Are you saying the right thing? Does your doctor understand you? Or even take you seriously? Lindsay Calder and James Miller from Living Well talk to doctors and patients about that special relationship...
In the 1967 film, Carry On Doctor, Dr James Kilmore (Jim Dale) is examining a patient (Frankie Howerd).
Doctor: Just as I thought. You fell on your coccyx.
Patient: I did not. I fell on my back.
Doctor: Your coccyx is at the base of the spine.
Patient: Well, I've never heard it called that before.
Back in the 1960s, when matron ruled and doctor’s orders were orders, patient/doctor communication was a fertile ground for comedy. Forty years on, things have changed. We’re not supposed to be in awe of medical professionals any more. Now, we expect something different.
What we want from our doctor
A 2006 survey of Mayo Clinics in the US found that patients identified seven ‘ideal physician behaviours’. They wanted their doctors to be confident, empathetic, humane, personal, forthright, respectful and thorough.1 All that – as well as diagnosing their problems!
David*, 43, was diagnosed as a teenager and has experienced HIV health care all over the world, where he has been variously made to feel like a “leper” and a “walking weapon”. It was only in 2000 that he came under the care of a London clinic and finally stabilised his medication. “Half of the information the doctors can use comes from myself, so I’ve learnt that it’s important to be honest and open,” he says.
He has other medical issues not related to his HIV and sees several physicians from different disciplines and hospitals. “I put them all in touch with each other,” he says. “My GP, my three consultants – they all need to know what’s going on.”
He is happy with his team, but he had to take control in order to get access to the right people. “My first GP was young and she had never dealt with anyone like me before. There were certain areas where she seemed unwilling to help, even though I had the backing of a consultant.”
Finally, David asked to speak to someone else and saw the head of the surgery. “He was experienced and understanding and is now my GP. I have a very good rapport with him.”
Alison* is a 36-year-old mother of two from Fife. She has been living with HIV since she was 19, when she contracted the virus from a former partner. She has a good relationship with her Edinburgh consultant, who she has been with for ten years. “I see her every six weeks. I think I’m her ray of sunshine,” Alison jokes. But she hasn’t always experienced ‘ideal physician behaviours’.
“My first baby wasn’t planned. I’d only been diagnosed for two years and I didn’t know as much about the condition as I do now. My GP told me it would be better to have a termination. I was frightened and could easily have taken his advice, but instead I went to the clinic where they put my mind at rest.”
When Alison’s second child was born, he emerged from the caesarean “a bit jittery”. “They kept asking me what recreational drugs I’d taken during my pregnancy. They made assumptions because of my diagnosis. I was so angry. Now I’m not afraid to speak my mind or say something is not relevant if I don’t believe it is.”
Alison now bypasses her GP’s surgery and goes to the Edinburgh clinic directly. “Speaking to my GP is pointless,” she says. “More often than not, because of my condition, they end up referring me to the clinic anyway. And I’m always aware the GP is under time pressure.”
Dr Phillip Hay is Reader in HIV/GU Medicine at St George’s, University of London, where communication skills form an important part of the curriculum. So what does he tell students about talking to patients? “One of the things I do say to my trainees, one of the arts of medicine, is to give the impression that you have limitless time with the patient in front of you, even though you don’t. Show that you are giving them 100% of your attention, not looking at your computer or your notes, while they are telling you their story.”
Dr Ann Sullivan, consultant physician in HIV/GU Medicine at Chelsea and Westminster Hospital, puts her stereotypical doctor’s bad handwriting down to the fact she looks at patients while she is taking notes. “If I’m sitting there, spending more time looking at the computer screen, like some GPs now do, then I might miss the fact that you’re rolling your eyes when I’m saying ‘oh, don’t worry about that headache’.”
Alison says, “My consultant lets me have the time I need. Whether I’m in there for 10 or 30 minutes, I don’t ever feel rushed. I always leave feeling satisfied.”
Being a good listener is key but, according to one study, doctors typically give a patient 23 seconds to speak before they interrupt.2 However, this doesn’t necessarily mean they think you’re time-wasting or saying something of no importance. “The patient can feel they are short-changed or haven’t had a chance to speak, but a lot of that is the doctor guiding the conversation to get to the bottom of a diagnosis because of the limited time,” says Ann Sullivan. “I’d hate to think that a patient had left an appointment without asking what they meant to ask. Ideally, at the end of the consultation I’d like to feel that I’d given them the information they needed and that I’d found out the information I needed to deal with their issues – whether it be about their HIV or their general health.”
It’s a two-way process, a trading of information. So, to turn the Mayo Clinic study on its head, what are ideal patient behaviours?
Telling it like it is
Doctors want the full picture. Withholding relevant details because you’re ashamed or embarrassed leaves your doctor in the dark and unable to give you the correct help.
“Sometimes a patient will eventually say ‘I didn’t want to tell you this because I knew you’d be upset’,” says Ann Sullivan. “Maybe they’ve missed their medication. But I’m never sitting there in judgement of someone. It’s supposed to be a joint relationship where you work together.
“I need to make sure they know the benefits and risks of what they’re doing. For example, if someone is taking unprescribed steroids to bulk up in the gym, I need to know so I can check it’s not causing bad side-effects. I’m never going to condone it, but I can make sure they are doing it as safely as I can within my professional capabilities. I know some patients don’t tell me things. That’s why the Kobler Clinic at Chelsea and Westminster is good. The nurses and health advisers in the team can spend more time with patients who sometimes feel more able to open up to them.”
My first baby wasn’t planned. I’d only been diagnosed for two years and I didn’t know as much about the condition as I do now. My GP told me it would be better to have a termination. I was frightened and could easily have taken his advice, but instead I went to the clinic where they put my mind at rest. Alison, mother of two.
Honesty is the best policy, but not always an easy one. So how do doctors deal with sensitive situations where they feel the patient is not being completely frank with them?
“If you outright accuse a patient of lying or you prove that they’re lying I think that’s extremely humiliating for them,” says Phillip Hay. “We would try to give them the opportunity to say that they were finding it difficult to tell us something. Often patients find it hard to be forthcoming at the start of a consultation. I give them two or three opportunities as we go through the consultation to raise anything that’s concerning them. I’ll ask open questions like ‘was there anything you particularly wanted to discuss today?’ or ‘is there anything troubling you?’ And then, at the end, I’ll ask ‘is there anything else you wanted to talk about today?’”
Alison, a self-confessed chatterbox, doesn’t hold anything back when she sees her consultant. “When I go to the clinic, I’m open and honest. They know how to fix things.”
But not every patient is comfortable bringing up ‘everything’. Rather like going to see the family GP about sexual health, it can be difficult to suddenly discuss sexual partners with a consultant you’ve been seeing for several years.
“When you first meet a patient, you ask if they have a regular partner, if they practise safe sex, if they disclose,” says Ann Sullivan. “Then to revisit that much later on – as a physician if you don’t initiate it, often the patient won’t. Some patients don’t find it awkward at all – they’re fine about it. But quite a number do find it hard. With the growing number of heterosexuals we’re seeing, people from some culture groups find it extremely difficult. As a physician, it’s really down to me to make sure I mention it. But if you have 10 other things to cover in a 15-minute appointment it does tend to drop off the end.”
Working the 15-minute slot
So how do you get the most out of those 15 minutes? The organisation Living Well provides health services to help and empower people living with HIV and AIDS. Their Positive Self-Management Programme uses an acronym Take PART to help participants work effectively with their healthcare team (see below). One of the things they recommend is preparing a written list of your main concerns and questions.
Mark*, 51, has been living with HIV for 14 years and attends a London hospital. He has developed a good relationship with his consultant who he is confident ‘knows everything’ about him.
Mark follows this advice and keeps a health diary which he updates on his laptop, printing off the most recent record to take to his consultations.
“If you are not prepared, then you are in and out in minutes,” he says. “I take the sheet of paper in with me and prioritise the most important questions. If I need to get my point across, my consultant will give me time.”
But do most doctors silently groan when they see a patient whipping out a list they’ve prepared earlier?
“I know some people say they hate it when patients bring out lists but I actually quite like it if they’ve got a couple of things they’ve specifically prepared,” says Ann Sullivan.
Patients want different things from their consultation. Some people come in, taking the first appointment of the morning, on their way to work, with no time to spare. They might want their CD4 count and viral load and that’s all they need from their doctor. Other patients might have lots of issues they want to discuss, which is when a list can be useful.
Patients think they’ll offend you if they ask for a second opinion, but if you’re a proper professional that shouldn’t worry you. Dr Ann Sullivan, consultant physician in HIV/GU Medicine at Chelsea and Westminster Hospital.
“Quite a lot of patients, even with antiretroviral therapy, still have memory problems, so for them a list is a very good aide-memoire,” says Phillip Hay. “A list doesn’t often lead me to making a diagnosis more easily, but clearly for the patient it’s important that I see that level of detail.”
A list is one thing, but should you be taking up your doctor’s time with internet print-outs? The net keeps us informed about all aspects of our lives, from cinema times to last week’s Lotto numbers. There, in black and white, it’s fact, but consulting Doctor Google about our health can be terrifying. So, how do doctors feel about filtering our online findings?
“In the internet age we don’t have an exclusive right to knowledge, so if the patient knows something you don’t and they’ve researched it properly, then you obviously acknowledge that,” says Phillip Hay. “However, there is a lot of bad information on the internet, so one thing we can do is try and encourage people to go to sites set up by appropriate organisations that have good advice rather than scare stories.”
Ann Sullivan has a couple of patients who print things off the internet and bring them in. “They say ‘I’m sorry to bother you, I don’t like to ask but I read this’. I’d much rather they asked. Sometimes it’s a bit crazy and sometimes it’s something really interesting that I haven’t read myself.”
Take PART
Prepare a written list of your main concerns or questions. Also report on your symptoms, changes in your life, medications, etc., as well as the results of visits to other physicians. If you have more than two or three questions, give the whole list to your doctor, but do not expect answers to more than a couple during your visit.
Ask questions about your diagnosis, tests, treatments and follow up.
Repeat back to the doctor key points discussed during the visit, like diagnosis, prognosis, next steps, treatment actions, etc. This gives both of you an opportunity to correct any miscommunications.
Take action. If there are barriers to your following his or her recommendations, let the doctor know. Ask the doctor to give you written instructions, if appropriate.
You’ve got mail
There is a perception that your doctor is only available to you for the allotted time of your appointment and that they are completely incommunicado until the next time. But, thanks to email, this is changing.
At St George’s, where Phillip Hay is based, Trust policy is that medical professionals don’t have email contact with patients because security can’t yet be guaranteed. But they are in the process of drawing up guidelines for email communication that they hope will be rubber-stamped by the Trust.
“Clearly, some patients do want to use email as a means of communication. It can sometimes be much better than a phone call because you can respond quickly and at an appropriate time of day,” says Phillip Hay.
GPs and consultants will vary, but it’s worth asking if email communication is a possibility. Mark and his consultant often use email when Mark needs an answer to something that he feels doesn’t merit a consultation. “I was going abroad and because of my condition I was concerned about the safety of having a yellow fever shot. My consultant needed to clarify the situation, so he looked into it in more detail then he emailed me to say it was OK to have the shot.”
The special relationship
Getting along with your health professional is crucial and, for whatever reason, if you are not satisfied you are entitled to ask for someone else – or for a second opinion.
“Patients think they’ll offend you if they ask for a second opinion, but if you’re a proper professional that shouldn’t worry you. You’ve probably asked three of your colleagues about it already anyway. I would never take it personally if someone questioned what I was doing or asked for more information,” says Ann Sullivan.
Phillip Hay stresses that a consultation should not just be a symptom Q&A session. “A doctor should try and find something on which the two of you can relate on a personal level, so the patient sees you as a person as well as a doctor. Find out about them and what’s going on in their life other than their disease.”
Alison and her consultant are both mums, so they often end up talking about their children. “That’s the main reason I have to take a list in with me,” she says. “Otherwise I end up chatting too much and I forget what I wanted to mention.”
As a patient, you too can find common ground with your doctor, be it football, travel, dogs. But perhaps not a mutual appreciation of those ‘ooh matron’ Carry On films...
* some names have been changed.