Making decisions and confidentiality

This information can help you with some of the issues that may come up, particularly if you are looking after someone with advanced cancer. There is more information about ethical and legal matters in the caring for someone with advanced cancer section.

There may come a time when the person you care for can no longer make decisions for themselves. As a carer, you may need to make decisions on their behalf or you may be consulted about decisions that affect them. For example, the doctor or nurse may consult you about stopping treatment or whether the patient should be resuscitated or not. You may be wondering when these kinds of decisions need to be made, and who should make them.

Making decisions

It can be helpful to discuss this with the person you are caring for early on in their illness, and to talk about it on a regular basis. The earlier you discuss these issues, the more prepared you will be for them if they arise and you will know what to do in different situations. It can also help to put the person’s mind at ease.

If the person you’re caring for wants you to make decisions about their care if they’re unable to, you will need to be given power of attorney  to do so. Otherwise decisions, such as whether or not to resuscitate, are made by the doctor. If you’re unsure, ask the person you’re caring for exactly which decisions they would like you to be involved with.

Sometimes it can be difficult to make decisions because other people, such as family members, wish to be involved. Or you may not want to be involved in making decisions at all. Every person and relationship is different. Use your own judgement and rely on the trust that exists between you and the person you are caring for. If you keep an open dialogue going, it can help if the time comes to make such decisions.

It can also help to have an open and frank discussion with the professionals involved in the  care of the person you are looking after. If you are consulted about their  care and treatment, it’s important that you know what the procedures involve and how these will affect them. It can be helpful to speak to their doctor to get expert medical information and advice.

When decisions have to be made, engage with those around you and make sure everyone is in agreement. The professionals around you can be a source of support as well.


Relevant areas of law

The Mental Capacity Act 2005 aims to protect people who are unable to make decisions for themselves. It applies to England and Wales. This means that a person can plan ahead for a time when they may not be able to make decisions on their own behalf. This includes decisions about financial matters and their health and social care.

For carers, this means that there is guidance in place for you to make decisions on behalf of the patient if needed. For more information, see Direct.gov information about mental capacity and the law.

People in Scotland are covered by the Adults with Incapacity (Scotland) Act 2000. Northern Ireland does not have a similar statute at the moment.


Confidentiality and sharing information

At times, you may be concerned about the condition of the person you are caring for and how to look after them. You may feel unable to ask the professionals questions or that you aren’t being kept up-to-date and consulted. You may also want the opportunity to express your own feelings.

Professionals may prefer to only share information with relatives or a person nominated by the patient. The Data Protection Act 1998 requires any organisation, corporation or governmental body that collects personal information to handle it safely. If the person you are caring for would like the people involved in their care to share information with you, they should let the professionals know as early as possible. You should also let the  healthcare team know that you are the carer.