What to do when consent is withheld

When providing care or support to a service user it’s critical to establish their consent. Not only is it a legal requirement, it’s also a central way you can respect service users’ dignity and autonomy, and get them involved in their own care.

What is consent?

The Oxford English Dictionary defines consent as the “Voluntary agreement to or acquiescence in what another proposes or desires.” In other words, consent is giving permission to do something. In health and social care settings, it generally means that an individual agrees to some form of care, treatment or activity.

Consent is considered valid if it’s:

• Given voluntarily, without duress or coercion
• Given by an individual who’s legally capable (or competent) of giving consent
• Specific and covers the care and support that has been proposed and planned
• Informed, meaning the individual understands their options
• Definite and lasting, meaning the individual agrees that the proposed action is right for them at the time and in the future. However, any changes to the plan will need to be consented to.

It’s important to note that consent in a care setting is considered to be a continuous process rather than a one-off event. Service users are entitled to change their minds and withdraw consent at a later point. Similarly, they can decide to give consent where it was previously withheld.

"Consent to care should be obtained prior to starting any form of support. Consent shows that the person and/or their representative has been fully involved in the decisions and without this, it can put care workers and organisations at risk."
Mark Topps | Regional Business Manager, Essex Cares Limited

Why could consent be withheld?

Understanding the underlying reason for a denial of consent is essential before you take any further action. There are many reasons why a client might refuse to give their permission for an action to be carried out, including (but not limited to):

• Not having relevant information to make an informed decision
• Not fully understanding the consequences of the options presented
• Not having the capacity to make a decision

It could also be that a client feels you don’t understand their needs or the potential/actual risks involved in an activity.

What can you do to establish consent when it’s withheld?

Try each of the steps below to uncover the underlying reason for refusal and consider if you can take additional steps to gain consent.

Understand the health status or condition of the individual

Knowing about your service user’s health may help you understand why consent was initially refused.

They may, for example, have a learning disability that means they need a specific communication method to help them to understand the consequences of the decision. Or they could have a severe case of dementia and may not have the capacity to make this decision as they find it difficult to recall facts for more than a few seconds.

Being aware of the full picture can help you find a way to get your service user to agree to the proposed action after all.

Learn the service user’s needs and preferences

There may be some physical, emotional, mental or social needs of your service user that you’re overlooking.

For example, a female client may refuse to receive care from a male carer due to her religious beliefs. Or the individual in question may find it difficult to swallow tablets, but is happy to take the medication in liquid form.

If you’re aware of your service user’s needs and preferences, making just that slight adjustment to your proposal may get you the consent you need.

Present all relevant information in a way that the individual can understand

One essential element of obtaining valid consent is making sure that your service user understands their options. This means conveying information in a manner that allows them to understand better.

You may need to use pictures or explain the matter in very simple and short sentences. For clients whose first language isn’t English, it may also involve the use of an interpreter.

If your service user refused consent, double-check that they actually understood the decision presented and its consequences. You may need to adjust the way you talk to communicate more effectively.

Familiarise yourself with all relevant information and options open to the service user

This one may sound obvious, but with the complexity of care and treatments rising it’s increasingly important. Only when you fully understand what’s being proposed can you explain it to your client in a manner that they can understand.

You may have overlooked some information that’s crucial for the individual to make their decision or there may be some alternative activities or care that you can suggest based on your client’s concerns.

Listen to the service user and observe other responses

The key to getting someone to change their mind is to understand why they said no in the first place. And the best way of getting that information is to listen to your service user.

Sometimes all they need is some more reassurance. Sometimes they’ll have concerns that require a slightly different approach to the situation. And sometimes they simply don’t want to give consent.

"It’s important that consent is reviewed and people’s wishes to decline are respected. This ensures care workers are supporting people to meet their needs effectively and there’s no breakdown in trust or professional relationship."
Mark Topps | Regional Business Manager, Essex Cares Limited

If your service user just doesn’t want to agree to the care, treatment or activity you proposed, there’s nothing you can do to change that (remember – consent has to be given willingly without coercion or duress) and you must respect their wishes. Adults with the capacity to make a specific decision can refuse the care or treatment offered, even when it’s detrimental to their health.

Yet, where any doubt exists that your service user is unable to understand and retain the information relevant to the decision and its consequences, or is unable to evaluate that information, you should assess the individual’s capacity to take the decision in question.

Before you carry out such an assessment, make sure that their refusal is not due to some other reason, such as stress or pressure from others. You should also be certain that you’re not confusing lack of capacity with your own assessment of the reasonableness of your client’s decision.

Different people will come to different decisions and it’s their right to refuse.

How we support you to manage consent

By using our consent management feature you can easily manage your service users’ individual consent records electronically (exclusive to our Pro and Group Tier). Service users or their Legal Power of Attorney can digitally sign one or multiple consent and lack of capacity forms directly from the Care Office. You can then schedule reminders to review these records together with the client at a later, pre-defined time.

Relevant resources

• Regulation 11: The Need for Consent, one of the Fundamental Standards under the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014
• Health and Social Care Standards: my support, my life (Scotland)
• Consent guides for healthcare professionals
• The Mental Capacity Act 2005

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