Involvement of service users

Taking account of the woman's preferences is an essential part of the involvement of service users in the delivery of care. In contemporary practice, the paternalistic doctor-patient relationship (whereby the patient was a passive recipient of whatever care the doctor decided was in her best interests) has given way to patient-centred care.

Guidance

The Scottish Health Council has published a document to guide health boards and managers in promoting service user involvement in maternity services (24). The recommendations in this guidance include the use of tools (such as questionnaires, comments cards, graffiti boards, kiosks, and hand-held patient devices) which en­courage women to provide feedback during their hospital treatment, and the use of new technologies (such as Skype, Twitter, and social networking sites) to promote user involvement. Community groups, employment networks, and education networks could be used to en­gage maternity service users and to disseminate safety information.

Consent

No treatment (including physical examinations and diagnostic pro­cedures) should be performed without the consent of the woman. Consent is not just the woman's assent to what the clinician pro­poses; it is the upholding of her right to self-determination, en­abling her to make an informed choice. The protection of patient self-determination entails: (a) recognition of, and respect for, the patient's right to decide what treatment to have or not to have; (b) pro­vision of an enabling climate for the patient to make self-determined choices (ensuring effective communication and building trust); and (c) having regard for the context (social, cultural, emotional, etc.) in which the patient has to make his/her decision (25).

For consent to be valid the following must apply:

1. The patient must have the capacity to make the decision.

2. There must be no undue influence.

3. The patient must have been given (or offered) sufficient informa­tion about the proposed treatment.

A woman who has capacity (the ability to understand informa­tion and use it to make a decision) may legally decline any treatment offered by her doctor, even if this means the death of the woman or her baby. This means, for example, that a caesarean delivery cannot be forced on a woman who has capacity. No one can give consent on behalf of an adult woman who has capacity. In mater­nity care, the husband cannot give a legally valid consent on behalf of his pregnant wife who does not lack capacity. Where the woman lacks capacity (e.g. due to unconsciousness or mental ill-health), the clinician should, in consultation with colleagues and the woman's family, provide treatment that is deemed to be in the best interests of the woman.

Consent is also not just about signing a form. Most clinicians are unaware that consent can be valid without a signed consent form. It is the patient's informed choice that constitutes consent, not the form. It is also not widely appreciated that consent can be invalid even though a consent form has been signed—if the patient has not made a self-determining, informed choice.

In obtaining consent to treatment, the clinician should provide the woman with clear, accurate information about both the bene­fits and the risks of the proposed treatment and of any reasonable alternative options (26). The clinician should check that the woman understands the information that has been given. Any risk that she is likely to consider as important should be disclosed, even if it is a remote risk.

Openness: the duty of candour

Doctors have an ethical duty to be open and honest with their pa­tients, particularly in relation to patient safety incidents. This duty is stated by the United Kingdom General Medical Council (GMC) as follows:

You must be open and honest with patients if things go wrong.

The GMC advises that, in offering an apology, patients should be told what happened, what can be done to deal with any harm caused, and what will be done to prevent someone else being harmed.

An apology is not an admission of legal liability.

There is now also a legal duty to be open and honest—known as the duty of candour—which applies to all National Health Service (NHS) bodies and other care providers registered with the Care Quality Commission in the United Kingdom (28).

As soon as is reasonably practicable after a notifiable patient safety incident occurs, the organization must inform the patient (or their representative) about it in person, provide an apology, and give a full explanation. A notifiable patient safety incident is one where a patient has suffered (or could suffer) unintended harm that results in death, severe harm, moderate harm, or prolonged (>28 days) psy­chological harm. There is a statutory duty to provide reasonable sup­port (such as emotional support) to the patient.

Complaints

The NHS Constitution (29) states the rights and responsibilities of persons receiving treatment in the NHS. These include the right to complain about the care she or he has received. Patients are en­couraged to make informal complaints about matters that can be resolved readily by the clinician or manager at ward or clinic level. Such complaints may be made orally to the ward/clinic staff or to the Patient Advice and Liaison Service (PALS).

Formal complaints are mostly made in writing and may be made to the organization that has provided the care complained about or to the body that commissions the service. The complaint is handled according to local arrangements that comply with guidelines laid down by law (30). These arrangements include timescales, routes of communication, and an obligation to state any action that has been taken or will be taken in response to the complaint. Apart from PALS support, the complainant may also obtain support (such as being accompanied to meetings) from a local Independent Complaints Advocacy Service (ICAS) which is funded by the local government.