A shared decision making approach to tinnitus care

Shared decision making is a core feature of evidence-based healthcare and its practice. NHS England states healthcare is to be delivered using a shared decision making approach: 

“No decision about me, without me. This can only be realised by involving patients fully in their own care, with decisions made in partnership with clinicians, rather than by clinicians alone.” 

The basic tenet of shared decision making is that where there is more than one clinical option available to manage a health condition (including doing nothing) then the patient has an active role in deciding which clinical option best fits their individual values and preferences. This has long been described as a core feature of evidence-based healthcare but has received less attention than the use of clinical research evidence to guide clinical practices.  

What currently informs care? 

There is clinical guidance available for clinicians. Within audiology there are clinical guidelines for tinnitus and practice documents to inform practitioners. These derive evidence from population averages to determine what on the whole works for whom on the whole. What’s lacking in the guidelines and guidance is how to engage with patients in conversations about their care, how to understand their preferences for both the outcome of treatment and for the type of treatment itself. 

Recent criticisms of evidence-based healthcare are that guideline following has resulted in a ‘tyranny’ of evidence e.g., doing whatever the trial said worked best, regardless of the preferences and values of the individual patient. 

The problem with this is that the best intentions to use the right treatment (in other words what works well for most people most of the time) can lead clinicians to prescribe, rather than negotiate, treatments. If this is not negotiated with the individual who will have to live with and work with the prescribed treatment there is a risk of ‘silent mis-diagnosis’. 

This phrase ‘silent mis-diagnosis’ describes how one can unwittingly cause significant harm to quality of life by mis-diagnosing – not the original condition – but what someone wants to do about the condition. 

Rarely do patients with silent mis-diagnosis bother their clinicians – they become dissatisfied, possibly seek help elsewhere and remain ‘silent’, leaving clinicians unaware that they have failed in any way.  

Hand on heart, most clinicians can reflect on scenarios where this may have been the case. The patient who didn’t return for follow-up. The patient who constantly complained. The patient who went home and never used the hearing aid again … 

What is needed is a way of integrating best evidence, clinical expertise and patient values and preferences, in other words a return to real evidence-based healthcare. What’s missing is guidance for people with tinnitus so that they can inform the discussion by adding what will help this individual patient in these individual circumstances.

Happily there is an alternative 

Our team have been working on projects to determine what currently happens in tinnitus care in the UK and how to ensure that patient preferences are recognised in decision making. The BTA (now known as Tinnitus UK) has funded research projects including the development of the tinnitus care decision aid.  This decision aid can enable both patients and clinicians to work from consistent information, aiding shared decision making by ensuring that both parties are well informed.  

How can we build shared decision making into tinnitus care? There are some well-documented stages in the clinical encounter: 

Building a relationship 

This is a bedrock of all change. We need to trust, believe and value our clinicians. They earn this by being explicitly interested in us. That means fully attending. In other words, not looking at computer screens, paperwork or anything else. Full and undivided attention is a great starting point. Open questions are what are needed. Great listeners are amongst the most efficient case history takers in the world. Just try talking on one subject to an interested person uninterrupted for two minutes and you’ll see for yourself. You cover vast amounts of information.  

It’s a challenge for a clinician to manage their own feelings during these moments. People who become audiologists generally want to help, and dealing with a chronic problem can leave them feeling powerless. But listening is the most important thing for them do, even if it is uncomfortable. It will do more good than you realise. People seek help more often to be heard and validated than to be fixed. 

It is also easier to pick up what the preferences and values of the person with tinnitus are. There are often indirect allusions in what is described that tell the clinician about their preferences. The clinician can also use open questions to explore this e.g., “what matters to you most about this?” 

In this relationship it is straightforward to negotiate that you will make a decision together. The clinician may even point this out: “so there are different approaches we can take to this and together we need to find what’s best for you”. 

Present choices 

There are always choices in tinnitus. There are always choices in hearing loss. The preferences of the clinician are important to acknowledge, but it is more important to hear what the patient prefers. They will be living with the consequences of the decision made. 

This is where the decision aids available really help. They are freely available to download and can be posted out to a patient before an appointment so that they can consider them with their family and friends.  

The decision aids we have developed meet the international consensus for decision aid standards because both the options and the frequently asked questions are derived from evidence. They are structured not just to present some options but to weigh up pros and cons for them.  

There are important differences between those who would like group support, those who would like a device and those who would like counselling or talking therapies. The decision aid helps people decide on the approach that suits them best.  

Our research found a really important role for the clinician here. Patients described really wanting curated information, tailored for them. They wanted someone to bounce their thoughts about management off. This is where clinicians can shine! It’s a misconception of shared decision making that simply giving a list of treatment possibilities will suffice. Rather, the pros and cons need to be explored. 

Make the decision in partnership 

The decision making is then the integration of the preferences and values the patient holds coupled with the expertise of the clinician. In practice this can mean having a conversation in which a thought experiment tries out the various options. What would it involve in practice to seek talking therapy in your area? How does someone access a group? What’s the commitment in time, travelling, cost, etc.? 

These finer points are discussed in this phase of the decision. These points may make all the difference between an evidence-based option in theory and one that is actually feasible for the individual to access or engage with. 

It’s also worth remembering that this is not fixed. Circumstances change over time and preferences may change too and it is important to have another discussion when this happens. 

Sharing control of decisions in the treatment of tinnitus is about providing care. It’s the ultimate expression that something can be done. That the individual patient has the authority and ability to have a say.