Saturday 17 March 2018

Not all doctors are great communicators

We may do it because we feel embarrassed, stressed out or are in a state of denial about our ill health. But handing over responsibility for our health to others, and failing to educate ourselves about the medical conditions which affect us — possibly because we’re too shy or embarrassed to ask questions — is really not the way to go, warns Dr Patrick Ryan, director of clinical psychology at the University of Limerick.

Lucinda McNerney with her three children, Óisin, Dervla and Aoife. Photo: Daragh Mc Sweeny/Provision
Lucinda McNerney with her three children, Óisin, Dervla and Aoife. Photo: Daragh Mc Sweeny/Provision

We may do it because we feel embarrassed, stressed out or are in a state of denial about our ill health. But handing over responsibility for our health to others, and failing to educate ourselves about the medical conditions which affect us — possibly because we’re too shy or embarrassed to ask questions — is really not the way to go, warns Dr Patrick Ryan, director of clinical psychology at the University of Limerick.

“People tend to hand over all the responsibility for their own health to a busy professional,” he warns.

“When they do this, it can make them feel powerless in the presence of that professional.

“When we feel powerless, we tend to feel afraid and traditionally that is how we have approached healthcare providers,” says

Dr Ryan, who lectures on the psychology of care-seeking and care-giving as part of the UL Clinical Psychology programme.

When we place all the responsibility for our health on somebody else, it’s not fair to either the health professional or to ourselves, he says.

“You need to remember that you are half of the relationship whether it’s with a nurse, doctor, dentist or pharmacist or dietitian, for example,” he adds.

So make the effort to ensure that you are clear about your ailment, your symptoms and your conditions, he says.

The best way to do this, he believes, is to think about what you need to know, and prepare your questions before a health consultation. Then come prepared to take notes of the ensuing answers.

“The really important thing to realise is that when you are meeting a professional,

you will not remember everything they say,” he explains.

“It’s okay to make a note of what they are saying so that you can think about it later,” he says.

Another excellent end-of-consultation technique, he suggests, is to ask a doctor, nurse, dentist or pharmacist, to summarise what they have said to you.

Next, you take the time to repeat back what you think you’ve heard, allowing them to correct any mistakes.

“This is creating a feedback loop between the two of you,” he explains.

Patients need to take some responsibility for their own health by actively preparing to seek out information, says Stephen McMahon, founder and chair of the Irish Patients’ Association.

“Patients often go to the GP and wait for questions to simply present themselves,”

he explains.

“It’s important to listen to what is being said and to be clear in your understanding of what is being said.”

Even if your doctor’s appointment is about quite a simple issue, come prepared, he says — and when necessary, take notes.

“Do I need an antibiotic? What effect does the medicine have? What do I do if I get sick during the night?” he explains, adding: “Prepare your questions beforehand and don’t feel silly about writing them down. Think about what you want to know,” he advises.

If you have been referred to a consultant about a serious health condition, ask about your treatment options, he suggests.

He also advises asking whether your consultant can refer you for a second opinion.

“Don’t feel embarrassed about asking this, because it is important,” he warns.

If you are seeing a consultant about the management of a condition such as cancer, it’s also useful to inquire whether there are any clinical trials taking place in Ireland.

“In certain cases there may be new treatments being tested, and joining a trial may be an option for you if your current medical regime is not working. It’s always good to find out about new trials.”

Stephen also recommends bringing someone else to a serious medical consultation.

“Two pairs of ears are better than one, and if there is bad news of, for example, a life-threatening condition, you may be shocked or upset which may result in you missing out on important information.”

This is also relevant to the area of mental health where it can be helpful to have someone with you.

Sometimes, he says, patients with mental health issues can feel disempowered because they feel people are not listening to them because they have a mental health condition.

It’s a very important general rule to realise that if you don’t understand what the doctor has said, it’s necessary to always ask for further explanation and clarification, he advises.

“Some doctors are not good communicators and some are,” he explains, adding that it’s also a good rule-of-thumb to always make a point of personally following up the results of tests and investigations.

“Sometimes people will say ‘I’ve had blood tests but didn’t hear back’,” he says.

However, warns McMahon, don’t complacently assume that a doctor’s failure to come back to you about test results automatically means everything is okay.

“Follow it up and take responsibility,” he urges, adding that, at the end of the day, recognise that it's not just you.

“I have been surprised over the last 20 years that sometimes the people who are most upset about the health system are professionals who have become patients.

“This is because they have such expectations of the system and when they are a patient, they find the system may not measure up to those expectations. They feel very disempowered.”

Some people are quite empowered and assertive when it comes to dealing with health professionals, he says, while others are disempowered by the simple fact that, for example, they are dependent on the healthcare system.

“Patients need to understand that it’s okay to ask questions,” he says, adding that generally his advice is to plan your questions ahead of time, and during the consultation, ask more when necessary.

“Ask the questions, make sure you understand what the doctor is saying, make notes, follow up on test results to ensure that all the information is there, understand what you can about the conditions and the risks and benefits of the medicine you are taking.”

It’s also important to ask how long you should be on a particular course of medicine, he warns.

“I know people who have been on what should have been short-term medication — and they have been left on it for years.”

Finally, says Dr Ryan, it’s important to accept that the health professional may not have all the answers, or may need to check something.

“Understand that it may not be possible

for you to ask about very complex medical

or psychological issues and to get an answer on the spot.”

A doctor may need time to think about and discuss your case in terms of your symptoms and individual circumstances, and may need to do their homework based around your particular, unique condition, he says.

Case study: A mere notebook and pen can be invaluable tools

Áilín Quinlan

Every time Lucinda McNerney goes to see the doctor, she brings a notebook and pen with her.

In the notebook is the list of questions she has prepared beforehand. It's a habit that's proven invaluable over the years when she's meeting with health professionals of all kinds - and Lucinda has attended many such consultations.

The 44-year-old finance and marketing co-ordinator and two of her three children suffer from a heart condition called Long QT, an inherited condition which can cause Sudden Adult Death Syndrome. Lucinda, who lives with her family in the Co Cork town of Midleton, has lived with Long QT for more than two decades.

She first discovered she had it at age 18, when, in hospital for treatment for a severe strep throat, she suffered cardiac arrest in the middle of the night.

A defibrillator was used and the teenager remained in hospital for three weeks, during which she had a pacemaker inserted and was diagnosed with the condition.

"Long QT is essentially an electrical difficulty with the heart which can lead to sudden Adult Death Syndrome," Lucinda explains, adding that she was also told at the time that she couldn't swim or play competitive sport and had to avoid certain over-the-counter medications.

Other than that, she recalls, she lived a normal life with the support of her family.

It was only after she got married in 2001 that the inherited nature of the disease came up as an issue. When Lucinda became pregnant with the first of her three children in 2002, she and her husband were referred to the National Centre for Medical Genetics at Our Lady's Children's Hospital in Crumlin. Some complicated issues had to be discussed: "We met with a genetics counsellor," she says, adding that the couple had heard that their children would each have a 50-50 chance of getting the disease. That was the first time Lucinda brought a notebook to a medical consultation.

"I brought the notebook with me because I knew there would be new information that I might not retain.

"I wrote the questions out the night before as I feared that I would lose the thread of my thoughts with all the jargon that would probably be used, and not get around to asking the questions I needed to ask.

"I wrote down the answers about everything from information about blood tests to finding the gene in the family that carried Long QT.

"I wanted to understand the condition as much as possible as there was a lot of detail involved.

"Genetics is very mathematical, I found the notebook to be a great help," she says, adding that to this day she carries a notebook and pen with her when she brings her two affected children, Oisín (13) and Dervla (6) - their 11-year-old sister Aoife escaped the gene - to the cardiologist for their regular check-ups every six to 12 months.

There are certain over-the-counter medications that the children cannot take, she says - these change as they grow - and the notebook is an invaluable aid to keeping on top of it all.

Lucinda always prepares a list of questions before the consultation. After the doctor has carried out the required tests on her children, she will start to work through the list.

Then it's the kids' turn - because these days, they too have their questions ready. "I have taught Oisín to be very aware of the questions he wants to ask and to bring them with him, so he does it as well," she says.

"Oisín has a check-up once a year and Dervla has one every nine months or so, and she will have her questions ready too.

"I want to ensure that my children are as confident as they can be in seeking information from their cardiologist, and also from their GP or their pharmacist because these people will be part of their lives, Long QT is a lifelong condition and it is my job to help my children to live well with it," she says.

She always makes a point of ensuring that the children both hear and understand what their doctors are saying, so, as she has learned over the years and is teaching her own children, the preparation of considered questions before a consultation is crucial - and none of them shirk from requesting clarification.

"And if something is unclear we will ask again!"

5 Tips from Lucinda McNerney

1 Prepare your questions in advance of the consultation:

"Ask for information about your particular condition, what the treatment is and what the next stage is, in terms of patient care or the progression of the disease", says Lucinda McNerney, who as secretary of the Sudden Cardiac Death Council and founder of the Long QT Syndrome Support group, has spent years advising patients on how to effectively communicate with doctors, nurses and others in the health sector.

"Ask about the long-term implications of living with your condition, physically and emotionally, and how this condition may impact on your life, or, if the patient is a child, on his or her life," she advises.

"Request information about "the go-to person or point of contact between appointments," Lucinda advises. This may be a cardiac nurse or it may be a relevant support group or organisation which has been set up to deal with your particular condition."

2 "Bring a pen and a notebook containing your pre-prepared questions to every medical consultation, and use both of them.

"Expect to receive a lot of information quickly during a medical consultation, and be aware that as you may be very nervous, you may not remember everything that is said. People get nervous. Fear takes over and a person may panic - people can be in a state of panic or denial when they meet a consultant," she explains.

"After receiving worrying news, it's very easy to miss some of what else a doctor or medical consultant is saying to you.

"As a result, it can be extremely helpful to write down the answers you receive as you go along, says Lucinda, who has found that effective interaction with doctors is an ongoing issue for many patients."

3 "Always ask the health professional involved to explain any terms or medical jargon that you don't understand."

4 "Make contact with the recommended support group, and, if you get a referral she suggests, run it by the support group to ensure you've been referred to the best place and to the people most qualified to treat you."

5 "Last but not least", says McNerney, "remember that your relationship with your doctor and other health professional must be such as to enable you to comfortably ask questions.

"You have to feel comfortable asking questions and if you don't feel comfortable doing this, then ask someone else."

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