Making decisions about our health

Question marks Research shows that if we make decisions about our health ourselves, there will be better outcomes for us. In this blog post I look at UK health policy on this and what to consider when making health decisions.

The principles of shared decision-making and patient-centred care are now part of UK healthcare policy, to try to shift healthcare culture away from the traditionally paternalistic (or parent-child relationship) approach and towards empowering us to make our own health decisions.

Some examples of making health decisions include deciding which drug treatment to opt for, which hospital to be referred to, whether to have screening for cancers, whether to have a vaccination, or whether to opt for surgery or use medication instead.

Health policy

The NHS Five Year Forward View sets out a new shared vision for the future of the NHS, which includes shared decision-making. The Shared Decision Making Collaborative , made up of the UK’s health organisations and patient groups, has set out plans that will help get patients more involved in decisions about their care. Tools to help patients make a decision, such as options grids or patient decision aids, will be embedded into existing guidelines.

In March, NICE announced that every single NICE guideline now has a more prominent statement on shared decision-making and personalising care in a blue box in its introduction:

“When exercising their judgement, professionals are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or service users. The application of the recommendations in this guideline is not mandatory and the guideline does not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.“

Informed consent

We’re only truly consenting to treatments or other health interventions when we have been informed of all risks, benefits and consequences. Part of a healthcare professional’s role, therefore, is to provide us with information, support us in making decisions and to respect whatever we decide. As part of this, health professionals may need to make health information and health discussions accessible for us. For more about this, see my post Help with communication and information: NHS England’s Accessible Information Standard

A collaborative relationship

Although it’s questionable whether the clinical information in 2007’s CG53 CFS/ME: diagnosis and management is up to date, the principle of patient choice and a collaborative relationship between us and our professionals is embedded throughout it. In addition to the standard blue box in the Introduction section 1.1 General Principles of Care reinforces that we’re in charge of our treatment and the pace of progression of interventions. It also states that we have a right to refuse or withdraw from treatment without this affecting other aspects of our care, or future choices about care.

The reality

I’m well aware myself, that although patient choice is now embedded within health policy, what we experience in reality isn’t always in line with this, but I think it’s important to know our rights and that we have the right to insist on making our own decisions. I’ve had my “personalised” care plan and treatment goals thrust at me to sign, without even being given time to read them. It looked like a copy’n’paste job, rather than discussing what the options were and then making the decisions myself. I was too unwell to stand up for myself at the time. If you find yourself in a situation where it’s difficult to get your voice heard, it might be helpful to have a look at Nothing about M.E. without me: A self-advocacy resource for people with M.E. .

What goes into making a health decision?

In the model of shared decision-making, both the patient’s and the healthcare professional’s expertise are considered equally important. Clinicians bring their clinical knowledge and evidence, and as patients we bring our previous experiences, values and preferences. All of this expertise is brought together to make a decision.

The diagrams below are from The King’s Fund: Making shared decision-making a reality: No decision about me, without me