Involving patients in decisions about their care

22 Feb

Angela Coulter
Angela Coulter

The Catalan Health Department deserves many congratulations on the launch of the website Shared decisions to help patients make decisions about their care. Nowadays the internet makes it possible to find vast quantities of information about health and healthcare, but this can be confusing and some of it is misleading and unreliable. So it is especially important to ensure that people are given access to trustworthy information to help them make decisions about their health.

We all want healthcare to be responsive to our needs and wishes. We want to be listened to, to be given clear explanations and to have our values and preferences taken seriously. Many of us want to be able to influence any decisions that affect us, including treatment decisions.

The key questions that we want answers to are as follows:

  • What are my options?
  • What are the benefits and possible harms?
  • How likely are these benefits and harms?
  • How can you help me make a decision that’s right for me?

Shared decision making is central to a patient-centred approach. It involves clinicians and patients working together to select tests, treatments, management or support packages, based on clinical evidence and the patient’s informed preferences.  It requires the provision of evidence-based information about options, outcomes and uncertainties, together with decision support counselling and a systematic approach to recording and implementing patients’ preferences.

Shared decision making is recommended in many common situations – for people facing major treatment decisions where there is more than one feasible option, for decisions about screening tests and preventive strategies, for maternity care choices, for choosing care and support packages for long-term conditions, for advance care planning for mental health problems and for end-of-life care.

Provision of reliable, balanced evidence-based information has been shown to improve people’s knowledge and ability to participate in decisions about their care, improving the quality and appropriateness of clinical decision making. And as part of a collaborative approach to care planning for long-term conditions it can lead to improved health outcomes.

Information provision is only the first step. As well as providing facts and figures to help people consider their options, doctors, nurses, and other clinicians must engage patients in a process of deliberation to determine their preferred course of action. This demands good conversations where both parties communicate well and share information. Effective risk communication, preference elicitation and decision support are essential skills for clinicians. And then of course there must be a commitment from both clinician and patient to act on the mutually agreed decisions.

Implementing shared decision making is challenging. It is very different from the traditional approach in which clinicians view themselves as experts and sole decision makers and patients’ knowledge, expertise and preferences are unacknowledged or undervalued.

Patients used to be expected to play a passive role and follow doctors’ orders, but this old-fashioned view is beginning to give way to demands for a more collaborative approach. This is very good news! Patients have grown up and health systems must now adapt to meet their expectations, helping them to become knowledgeable, skilled and confident co-producers of health.