You may remember that we recently told you all about how NICE was consulting on new guidelines for the treatment of chronic primary pain. So many of you got in touch to tell us your thoughts on their proposals, and as a stakeholder we compiled all of your responses into a formal response (which you can read here).
Well, NICE are back with a new consultation, this time on ‘Shared Decision Making’. This is another really important one, because it’s looking at the relationship between healthcare professionals and patients, and how they come together to make decisions. Or as NICE puts it:
“This guideline covers how to make shared decision making part of everyday care in all healthcare settings. It promotes ways for healthcare professionals and people using services to work together to make decisions about treatment and care. It includes recommendations on training, communicating risks, benefits and consequences, using decision aids, and how to embed shared decision making in organisational culture and practices.”
So in short, shared decision making, and by extension these proposed guidelines, affect all of us in pretty much every interaction we have with our clinical teams.
Below you’ll find a summary of our thoughts on the topic, but if you want to read the whole guideline document yourself, it’s here, and you can find supporting documentation here. Below you’ll also find a form where you can contact us to tell us what you think of the guidelines, and what, if anything, you’d like us to submit in our formal stakeholder response. This post is quite long so you can skip sections if you want, just click on a link to go to the section you want:
First off, who is NICE?
The National Institute of Health and Care Excellence (NICE) is an independent organisation created by the government in 1999 with an aim to decide which medicines and treatments should be available free on the NHS in England. The main responsibilities of NICE are to
- assess new drugs and treatments as they become available
- provide evidence based guidelines on the treatment of particular conditions
- provide guidelines on how public health and social care services can support people
- provide information services for those managing and providing health and social care
NICE considers whether a treatment benefits the patients, whether the treatment is cost effective, and if it helps the NHS meet its targets.
What are NICE proposing?
Nothing in these guidelines is bad, but they could go a lot further. In short the document covers:
- Embedding shared decision making at an organisational level
- Planning and implementing shared decision making
- Supporting practitioner skills and competences
- Promoting shared decision making to people who use services
- Putting shared decision making into practice
- Before appointments
- During appointments
- After or between appointments
- Sharing information between services
- Patient decision aids
- Communicating risks, benefits and consequences
From our perspective, the key area is the ‘putting shared decision making into practice’. Here they suggest:
Before appointments: offer access to resources (e.g. booklet, flyer or app) to help them prepare for discussion and to think about matter, what they hope to gain etc.). Offer to arrange support if needed.
During appointments: agree an ‘agenda’ including what will be discussed and how long the appointment will last. Ensure the patient understands they can take part in making choices. Encourage people to think about what it important to them and to express their needs and preferences. Explain aims, risks, benefits and consequences of tests, treatment and other healthcare services and options, including no change, and how each aligns with the patient’s aims. Set aside time to answer questions and for further discussion. Check they understand and give enough time to discuss what is important in light of information provided and check that their choice is consistent with this. Give enough time for patients, family, carers etc. to make decisions. Acknowledge people may vary in their views about balance of risks, benefits etc. and that they may differ from those of their healthcare professionals. Make a joint decision and at the end of the appointment state clearly what decisions have been made to make sure the person agreed and understand what has been decided. Write up the consultation including decisions made and details of what the person said was important to them.
After or between appointments: Give people resources to help them understand what was discussed and decided (e.g. a printout). Ask the person if they would like a letter detailing the information from their appointment. Encourage them to record the discussion during their appointment.
Our thoughts
Of course we would like your input and thoughts on these guidelines, but to kick things off, here are some of our thoughts.
Anyone who has had to fight for a particular treatment, or push back against a doctor knows that advocating for yourself requires skills and confidence that comes with time and practice. It is a skills set not used in other areas of life. Many of us feel that we cannot ask questions or challenge a doctor because the doctor is in the position of power. Even more of us feel we cannot complain or ask for a different doctor because we would be challenged to prove our complaint, and would not be believed against the medical practitioner in question (i.e. the institution would protect its own). In essence this guideline misses the fact that a true move towards shared decision making requires a wider shift in power dynamics and how doctors and patients perceive themselves and each other.
Did anyone else chuckle at the ‘during appointments’ list?! Where on earth are they finding the time for all of this? Clearly the people writing this document have never been to a doctors appointment with anything complicated. Proper shared decision making takes time and nowhere in this proposal was there mention of increasing appointment times. Those of us with complex health needs already know that we have to rush appointments, and getting home and realising you forgot to raise points and ask questions is the norm. Until they give us longer appointments or allow us to book back-to-back appointments, true shared decision making cannot happen.
The ideas for between appointments also feel really weak. As we said above, most of us know what it is to get home and realise we forgot to ask something, or forgot to mention a certain symptom. On top of that, it often takes several days to digest all the information thrown at us, by which time we’ve got even more questions. We’d love to see some sort of portal where we could ask questions and clarify points in between appointments. That way, it’s an ongoing conversation, which takes pressure off the in-person (or on-telephone) appointments, which in turn improves the experience for everyone.
Sharing information between services continues to be a clunky, ineffective process. Even the best GPs do not have the time or expertise to coordinate care between multiple specialisms, and patients are left on long waiting lists for often simple questions (e.g. “should we be concerned about X?”). In an ideal world we would have multidisciplinary teams that could meet to truly coordinate care, with the patient present. Recognising this is unlikely to happen, a portal that is open to all consultants and the patient, where questions, letters, referrals etc, can be sent back and forth would be invaluable in including the patient and ensuring everyone is on the same page, significantly improving decision making by making it more informed.
In good practice we have experienced, shared decision making goes beyond the three talk model. In our experience, at the next appointment the first item on the agenda was to review decisions made at the last appointment, and to check that all parties are still happy with them, with the option to talk everything through again, change decisions and not continue with planned treatments and procedures. This guideline is static in that it looks at shared decision making in one appointment, but true shared decision making is a process over time, that changes and adapts as the patient and their clinical team comes to understand the patient’s health landscape.
The recommendations for research include “What influences the acceptability of shared decision making in populations that predominantly believe in the authority of the healthcare professional?”. There needs to be an additional recommendation for research: “What influences the acceptability of shared decision making in healthcare professionals that predominantly believe in the authority of the healthcare professionals?”. Many doctors have worked from a position of authority for years, if not decades, how do we change their deeply ingrained mindset? What happens if a healthcare professional doesn’t want to change?
Tell us what you think of the guidelines, and what, if anything, you’d like us to submit in our formal stakeholder response.
