Consent is not just a signature on a form or a simple expression of ‘yes’ or ‘no’ with regards to a suggested investigation, intervention or treatment; it needs to be viewed as one part of a collaborative process between a patient and the clinician. In order for a patient to be truly engaged and involved in their care, they need to be able to weigh up the options presented to them and decide with their responsible clinician, which course of action is best for them. You can only have given true consent for a course of action if you were able to consider it in relation to the alternative options open to you when making the decision.
Which option suits each will vary from patient to patient. Two patients may have identical symptoms, risk factors and physiological characteristics and both be deemed suitable for a particular treatment. However, they will have different lives, different values and different experiences. These will inform their decisions and their choices as long as they are encouraged to take these into account.
Consider Patient A and Patient B.
Both meet the criteria for surgical procedure X that requires 2 days in hospital and a 6 week recovery period of limited activity at home. Objectively, their symptom burden is similar and they would both likely see benefit from the treatment.
Patient A is happy to proceed as they are retired and have support at home from their partner who can help with their recovery. Patient A will be sad to miss out on some hobbies for 6 weeks but their symptoms bother them so much that they are happy to go ahead.
Patient B is reluctant and asks a lot of questions about the recovery period. They can see that the procedure may alleviate their symptoms but they are the primary carer for two elderly parents who require significant daily input; six weeks recovery would be unimaginable as who would take on this caring role over that time? Patient B’s symptoms don’t bother them too much, they had just wanted to see a doctor to find out what the options were. On reflection, patient B would rather manage as they are and are reassured to know that they can be seen again in the future for further discussion if they change their mind.
On paper, 2 patients who qualify for a beneficial procedure but who have made different decisions. Patient B felt able to have a thorough discussion with their clinician and their individual circumstances were revealed. What would have happened, however, if they had ‘not wanted to bother the doctor’? Would they have gone along with a treatment plan that actually may have caused problems for them? A treatment plan that they may not have been able to comply with, that they may have defaulted from.
Surgical procedure X can easily be replaced with medical treatment Y with similar results. What if treatment Y had a mild but common side effect that may limit patient A’s ability to enjoy their favourite hobby, would they agree to the treatment? In contrast, for patient B, if it did not impair their caring role for their parents, they might be happy to put up with the side effect as the benefits are so clear for them.
Encouraging and empowering patients to ask questions and get involved in their care is important. Although many patients would feel comfortable questioning their doctor, dentist or nurse, there are many who would never consider this. Hierarchies may be flattening but some will still feel a distinct imbalance of power when they are in the role of patient: will my questions be welcomed? Will I look stupid or rude for asking for more information? What do I know?
With this in mind a set of 5 questions that patients should be encouraged to ask has been promoted by Choosing Wisely UK and within the Chief Medical Officer for Scotland’s Practising Realistic Medicine report. Currently five health boards in Scotland are piloting the promotion of these questions to patients. Healthcare providers can also consider these questions when discussing options with their patients to ensure that all the information required to make a balanced decision has been given.
As described in Practising Realistic Medicine, the questions are:
- Is this test, treatment or procedure really needed?
- What are the potential benefits and risks?
- What are the possible side effects?
- Are there simpler, safer or alternative treatment options?
- What would happen if I did nothing?
The GMC recognises the importance of shared decision making and includes it within its 2013 Good Medical Practice Guidance as part of ‘The duties of a doctor registered with the GMC’:
- Treat patients as individuals and respect their dignity
- Work in partnership with patients
- Listen to, and respond to, their concerns and preferences
- Give patients the information they want or need in a way they can understand
- Respect patients’ right to reach decisions with you about their treatment and care
- Support patients in caring for themselves to improve and maintain their health
Further information on shared decision making can also be found in Making shared decision-making a reality: No decision about me, without me, a report written by Angela Coulter and Alf Collins for The King’s Fund in 2011.