A column by Maureen Flynn
This month, we focus on the National Consent Policy, which was prepared by the National Consent Advisory Group, chaired by Dr Deirdre Madden and led by Angela Hughes in the Quality and Patient Safety Division of the HSE. The group developed the documents following extensive consultation with health and social care professionals and the public. It provides a single over-arching policy for consent in health and social care in Ireland.
Autonomy and consent
John Stuart Mill’s depiction in 1859 in his book ‘On Liberty’ of personal autonomy appears deceptively simple and noncontentious: “Over himself, over his own body and mind, the individual is sovereign”. Although this principle of autonomy is regarded as central to decision-making, its practical implementation in health and social care can often be challenging.
The central idea of autonomy is that one’s actions and decisions are one’s own. This idea is connected to privacy, freedom to choose based on one’s own views and values, and, ultimately, accepting responsibility for one’s choices. All health and social care interventions involve decisions by patients or people availing of social care. Consent must be obtained before starting any treatment or investigation, or providing personal or social care or involving someone in teaching and research whether it be in hospitals, in the community or in residential care settings. How the principles are applied, such as the amount of information provided and the degree of discussion needed to obtain valid consent, will vary with the particular situation.
No single approach to discussions on treatment or care will suit every person or apply in all circumstances. Individuals may want more or less information or involvement in decisions and some may need additional support to understand information and express their wishes.
A consent form is just one way to document that a process of communication has occurred. For consent to be valid, the person must have received sufficient information in a way they can understand about the nature, purpose, benefits and risks of an intervention, service or research project, and not be acting under duress, and be competent to take the particular decision.
Questions arise here about what is meant by ‘sufficient information’, particularly regarding the risks of any medical procedure or research project. Should every possible complication or side effect be explained to the patient, or should it depend on the seriousness of the potential side effect? There may be difficulties in assessing a person’s ability to understand this information and apply it to their own particular circumstances in reaching and communicating a decision.
Consent and children
Across health and social care services from birth to death, challenges arise in ensuring that the autonomy of the person is respected and their consent is received before any intervention is provided. Parents or guardians are responsible for making decisions in the best interests of their children. In relation to newborn screening and vaccination, or where children are seriously ill, they may be asked to make decisions about medical and surgical treatment.
As children get older, different issues emerge: the personal autonomy of the child must be integrated into any decision- making. This does not mean that the interests of the parents are displaced, as in most instances the child’s interests will be best represented by its parents and they are given wide legal authority to make decisions on behalf of their children. But children may have strong views about their own care, and should be given the necessary information in a way that they understand the consequences of the decisions to be made. As far as possible, they should to allowed participate in the decision making. Difficulties can arise where the child seeks to make a decision that the parents and doctors believe is not in his or her best interests, or where a teenager seeks medical treatment without the knowledge of his or her parents.
Consent and end-of-life decisions
Decisions may have to be made about the continuance of life-prolonging treatment, or whether further intervention would benefit the patient. Although communicating bad news to patients can be difficult, patients are entitled to be told the truth about their condition and treated with respect in the choices that have to be made so that they can, where possible, control the manner of their death.
Refusal of treatment
Another challenge in respecting autonomy relates to the situation where a person refuses medical treatment, contrary to the advice of their doctor. If a patient is capable of making their own decisions, this must be respected, even where caregivers think the decision is unwise or will have fatal consequences for the patient.
Opportunity to use the resources
All these issues and those relating to ‘do not resuscitate’ orders and participation in research, are discussed in the national policy. There are also explanatory leaflets that may be made available where social care services are provided. The policy is available at www.hse.ie/go/qps
Please email any feedback on your experience of using the resources to: firstname.lastname@example.org
Maureen Flynn is the director of nursing (national lead for quality and safety governance development) at the Office of the Nursing and Midwifery Services Director, Quality and Patient Safety Division, HSE
Acknowledgement : Thanks to Dr Deirdre Madden, UCC senior lecturer in law, who chaired the National Consent Advisory Group and prepared this article. Thanks also to Angela Hughes who led the work of the group on behalf of the HSE’s Quality and Patient Safety Division and to the members of the National Consent Advisory Group for their assistance in developing the national policy and resources.
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