Sarah Hallahan & Dr Helen Noble, Belfast City Hospital and Queens University Belfast, Northern Ireland.
The involvement of patients in decision making is a principle of the National Health Service (NHS) Constitution, which emphasises how patients play a key role in managing their own health and should be actively supported by the NHS to do so. The NHS should be coordinated and tailored to suit individual patient needs and preferences and patients and their families have the right to be involved directly, or through representatives, in decision making regarding their health and care where appropriate. It is paramount that health professionals accept the patient as ‘the expert’ in relation to their own individual values and preferences regarding care, and involvement in the decision making process is crucial. This point along with an increase in chronic illness leading to increased mortality has given rise to self-care and expert patient initiatives. The Expert Patient Programme (EPP) is an NHS initiative which aims to support people by promoting self-advocacy, increasing their confidence, improving their quality of life and providing information on informed decision making in regards to their condition; therefore increasing the individual’s ability to take the lead in their own care. See http://www.nhs.uk/NHSEngland/AboutNHSservices/doctors/Pages/expert-patients-programme.aspx
Decision making is situational and decisions are made in light of a particular set of circumstances. The involvement of the patient and health professional in the decision making process depends on the model used; the most common models of medical decision making being the Shared Model, Informed Model and Paternalistic Model (Charles et al 1997). The Shared Model of decision making is now advocated as the preferred model throughout health-care, referred to as the ‘crux’ of patient-centred care (Legare et al 2010). The process of shared decision making involves consulting, negotiating and collaborating with patients, relatives and members of the multi-disciplinary team, to promote health and to inform the delivery of high quality patient-centred care. Health care practitioners share information with the patient about their medical condition and the patient is then invited to share information about their individual beliefs. In order to do this, the health care practitioner must draw on a contemporary evidence base relating to the relevant area and share this information with the patient thereby enabling them to make informed choices and decisions about the care that they will receive.
Despite its potential, the Shared Decision Making Model has not yet been adopted in all clinical practice. Although patients who are actively involved in decision making about their health have better outcomes, healthcare professionals often do not involve them in these decisions. Reasons for this include factors which influence shared decision making such as the patient’s ability to participate; or patients may request a new treatment but research may not exist to support its use. In addition the effectiveness of shared decision making is dependent on establishing effective relationships with patients and families and confidence is an essential factor that health care practitioners need to incorporate in clinical decision making, but may be lacking. Trust is also paramount in the process of building therapeutic relationships and successful communication is key in individualising care and promoting patient involvement in decision making. It is essential that health professionals give patients the information they require in terms they understand, rather than using complex medical language in order for them to understand the situation and enable them to take control of the decision making process. The use of colloquial language is important in empowering patients to participate in decision making; however this is dependent on the health care practitioner’s willingness to engage with this process and initiate these discussions. Gaining insight into patients’ preferences and individualised needs is facilitated by meaningful interaction and depends on both the patients’ willingness and capacity in participating in the process and the health care practitioners interviewing skills.
The patient-centred focus reinforces the importance of health care practitioner professionals working collaboratively with the patient to prioritise their needs and together agree a plan of care to meet the patients’ health and social care requirements. True collaboration requires mutual respect along with open and honest communication. Patient-centred care planning starts with the recognition of the individuals’ strengths, hopes and wants; this allows for genuine expression of what the person perceives as his/her goals. Patient involvement through shared decision making is encouraged to support patients in deciding on care suitable to their condition, lifestyle and social circumstances and includes ‘getting to know the patient’ and providing opportunities for choice regarding the care the client would like to receive. Patients are offered choices whilst being educated about the potential consequences and risks of the choices that are made.
Involvement of patients as active participants in care represents a shift in power distribution from service providers to service users. Individuals must act as active participants in their empowerment and health care practitioners essentially act as empowerment facilitators. Empowerment is a journey that will lead the patient to self-efficacy, which is defined as ones belief in their own ability to change behaviour. A patient-centred approach to empowerment is one in which the individual truly makes decisions together with the health care practitioner.
Charles, C., Gafni, A. and Whelan, T. (1997) ‘Shared decision-making in the medical encounter: what does it mean? (Or it takes at least two to tango)’, Social Science & Medicine, 49(5), pp. 651-661.
Legare, F., Ratte, S., Stacy, D., Kryworuchko, J., Gravel, K., Graham, I.D. and Turcotte, S. (2010) ‘Interventions for improving the adoption of shared decision making by healthcare professionals’, Cochrane Database of Systematic Reviews 2010, (5).