- Post date:
- Tuesday, 14 February 2017
It’s never easy to hear you are losing your sight. Radhika Holmström talks to some of the experts about ‘telling the news’ at different stages of the sight loss journey.
Coming to terms with sight loss can be on a level with coming to terms with bereavement and for good reason
. It is one of the things people fear most
and however much support people get, they are still facing life without one of their five senses. If patients are told in a manner they find insensitive – or indeed, in a way they can’t completely understand – it can be even more traumatic.
There are some broad approaches that apply pretty well across the board but sight loss is also not usually a one-off; it is a process, from the first diagnosis of a possible problem onwards. As a result, ‘breaking the news’ happens at different stages, as the ‘news’ itself changes.
At the opticians
Optometrists are the people who often first spot that something is ‘not quite right’, at a regular eye check. They may flag up that they have a concern, and get their customer referred to hospital for a proper look, but that’s all, explains Dr Susan Blakeney, clinical adviser to the College of Optometrists. “We don’t have any specific training in this area because the optometrist isn’t usually the one who’d give a view.” Obviously, though, they do sometimes have to explain that there’s something that needs addressing. “It’s a difficult balance between scaring them and getting them to take it seriously.”
The majority of patients find out what their diagnosis is from an ophthalmologist: a medically trained doctor who has then specialised in ophthalmology. At undergraduate level, doctors are trained in talking to patients about difficult topics but there is some concern – across all medical specialties, about the relative lack of formal training in ‘difficult conversations’ for anyone who is not intending to work in general practice or palliative care.
“Once you become an expert you have great difficulty getting back to the level of naivety of most patients,” points out Dame Lesley Fallowfield, who is the Professor of Psycho-oncology at the University of Sussex and specialises in this whole area. “Being able to put very complex information into layman’s terms without being patronising is a skill that I think really is overlooked.”
“I think the principles are the same whatever surgery you are discussing,” says Mark Watts, who is the chair of the Royal College of Ophthalmologists’ education committee and a consultant ophthalmologist at Arrowe Park Hospital, pointing to courses run by the college and encouragement for all trainees to take up these and other training opportunities. “We are aware of the need for good communication, and trainees who don’t have these skills won’t progress.”
Further down the line
It’s not really surprising that many people don’t take in the news properly when they are told by the person who is supposed to be the appropriate professional. “We are very aware some people will walk into their first meeting with an Eye Clinic Liaison Officer (ECLO) not knowing the name of their eye condition,” says Stevie Johnson, Clinical Lead at RNIB. “Occasionally they may not have been told, but it’s also the fact that when people hear bad news they only take in a certain percentage of it. Sometimes they don’t even realise it is bad news.”
A key role of the ECLO is to check that people do get that information; and ECLO training does cover communication skills and a module on the emotional impact of sight loss. ECLOs also have a pretty good grasp of the main conditions that result in sight loss. However, Johnson echoes Blakeney’s insistence that the right person to give proper, detailed information to a patient is the professional who diagnoses them. “If the person says they’ve been told they have a particular condition, the ECLO role is to explain it in general terms. If they raise questions about their specific condition, ECLOs will tell them to go back to the specialist, or advocate on their behalf to get those answers from the appropriate person.”
On the other hand, ECLOs do have to back up and reinforce some of the unwelcome news about things that people cannot do, such as drive. “We know that is extremely difficult to hear, although there’s a host of services we hope will make things easier,” says Johnson. For some people, this is when their overall diagnosis really starts to take shape – and can be very hard to deal with. Even learning that there are strategies for dealing with things that have become difficult means also accepting that those difficulties are long-term.
Simon Labett, who is a Rehabilitation Officer (Visual Impairment) for Bradford Metropolitan Borough Council, explains how it can be quite delicate to manage. “A lot of people think they will get their sight back, and for me it’s very hard to know when that will get in the way of the rehab process. I don’t want to mess up my relationship with them. I’ll talk about how ‘you need to get to the shops now’. Sometimes they genuinely think they are going to get better and at that point I look for allies, like family members: or I’ll say something like: ‘I’m not a medic but it is highly unlikely’. It’s a relationship with you and them, and you have to find whatever gets you through to achieve those rehab goals.”
A diagnosis is for life
“People need to be told carefully, directly and simply,” concludes ophthalmologist Jane Leitch. She specialises in children – where breaking the news can be particularly difficult for all sorts of reasons – but her points apply to adults too, “We need to put things in context, direct patients to where they can find reliable information, ensure they have a first point of contact and make sure that there’s direct communication – not just with the eye clinic but with other support in the community. It’s not just the diagnosis of an eye condition, it’s the management within the family, within education and within life.”
Johnson recommends 10 pointers for breaking the news:
- Prepare yourself: take a few deep breaths before seeing the patient if necessary
- Make sure you have all the facts
- Consider the environment (if possible talk to the person in a less ‘clinical’ area)
- Show respect, and dignity
- Be straightforward and to the point, but also show empathy. Have some prepared phrases ready and be aware of your own responses
- Look someone in the eye, whether they can see you or not – they will hear your voice
- Take your lead from them – it may be appropriate to reach out and touch them on the hand if that seems what they wish, but show respect for their personal space
- Be ready for a wide range of responses. Some people will be angry, not necessarily at you, and some will be upset. If someone is not ready to talk, make sure they know where you are to come back to when they wish
- Give them appropriate and accurate information and contact details
- Explain the next steps, including time frames and what they can expect going forward.
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