Zoe McNeill has had mixed experiences of shared decision making (SDM) in her care since she was diagnosed with cancer – some good experiences and some that fell short of best practice. She’s hoping that standardisation of the process will help to ensure a more consistent approach, where sharing of information between clinicians and patients is the norm.
Why did you choose to get involved with the SDM project?
I was diagnosed with breast cancer in 2016 and sadly experienced the fallout that can occur when shared decision making (SDM) isn’t carried out properly. There were a number of decisions that needed to be made about what treatments to have and when to have them. Although I was consulted on some of these, it soon became apparent that I had not been made aware of all relevant potential outcomes of the treatments being offered.
All patients have a right to be involved in decisions about their care and health professionals must ensure that all relevant information is shared. However, I am particularly passionate about SDM being delivered consistently in cancer services given that a cancer diagnosis results in a patient making some of the most important decisions of their lives.
As a result of my experiences, I have been involved with my local hospital Trust in a project to improve the consistency of SDM provision (currently deferred due to COVID). Part of this was investigating the possibility of a SDM record.
I’d always hoped that the process of shared decision making could be standardised, to ensure that people get the level of care they need and deserve. I became involved with the PRSB project to support the development of a standard because it’s the key to enabling patients to receive equality of care in relation to information sharing and treatment decisions.
What are the benefits of SDM?
For me, the real benefit is that it gives clinical teams and patients the chance to work in partnership and share responsibility for decisions about treatment and care. This partnership facilitates good communications and enables mutual understanding and respect. The patient’s voice is not only being heard and listened to, their personal views are being actively sought.
For this reason SDM also helps to facilitate personalised care. Having information from the patient about what matters to them is essential, so that medical professionals can make sure they are fully informed of all treatment options, as well as the benefits, risks and consequences that are relevant to them as an individual. For example, shared information and understanding regarding the order of some cancer treatments enables the right decision for the individual patient. Clinicians can’t assume that what’s important to one patient will be the same for another.
SDM allows patients to have self-determination with regard to what benefits, risks and consequences of relevant treatment options matter to them. It is so important as it is the patient’s body and life that will be impacted by treatment outcomes.
What needs to change to make it better/why is information integral to improvements?
Formal SDM processes based on an information standard need to be embedded into routine clinical care so that patients are guaranteed to always receive good quality SDM.
In consultations where SDM has been routine I have had a much better experience of care, compared to where it wasn’t. When I was involved completely in decisions, I felt as though I had more control over my health and care. The sharing of information is integral to improvements because valid treatment decisions cannot be made without the relevant information from both the clinical team and the patient.
The record of information as detailed in the SDM information standard needs to be made available to both clinical teams and patients. This will allow both parties to verify mutual understanding of the information shared and enable patients to have more time to consider decisions outside formal consultations.
Why is standardisation of care so important to patients?
Patients have a right to be involved in decisions about their care, but studies have shown that my varied experiences of SDM are not unusual. An SDM information standard should ensure equality of care for all patients with regard to decisions about their treatment.
An SDM information standard that reflects professional SDM guidelines (particularly with regard to the equal importance of the clinical team’s and the patient’s input) will enable all patients and healthcare professionals to exchange the information needed in order to make a valid treatment decision.