Today's post is about ethical and legal matters when you're caring for someone with cancer.

This advice has been written by other carers of people with cancer and has been taken from our booklet Hello, and how are you? A guide for carers, by carers.Image of the Hello, and how are you? booklet

You can download the full booklet and find out more about how Macmillan can help carers. You can also join our carers group to connect with other carers and to share support and advice.

The advice in this post comes from carers’ own experiences.


Ethical and legal matters

‘My Dad didn’t want to talk about what would happen at the end. So we talked things through together as a family and made decisions based on what we felt was best.’



The topics covered are:

  • Making decisions
  • Advance care planning
  • Relevant areas of law
  • Confidentiality and sharing information
  • Talking to the person you care for



Understanding the ethical and legal side of caring for someone with cancer can be daunting. You might have questions about making decisions that affect the person you care for, or how the law affects you as a carer. This information can help you with some of the issues that may come up, particularly if the person you are caring for has advanced cancer. We found that having open and honest conversations with the person we cared for, and their healthcare team, helped during difficult times.


Making decisions

There may come a time when the person you care for can no longer make decisions. 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 might consult you about stopping treatment, or whether the patient should be resuscitated. You might be wondering when these kinds of decisions need to be made, and who should make them.

We found it helpful to discuss this with the person we cared for early on in their illness, and to keep talking about it day-to-day. The earlier you discuss these issues, the more prepared you will be for them if they arise. It can also help to put the patient’s mind at ease.

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. We found that 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 patient’s care. If you are consulted about the patient’s care and treatment, it’s important that you know what the procedures involve and how they will affect the patient. It can be helpful to speak to the patient’s 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. We have more information about making treatment decisions.


Advance care planning

Advance care planning (also known as statements of wishes and preferences) helps identify a person’s wishes and choices for their care towards the end of their life. Making an advance care plan can help the patient think about the future. They can communicate their wishes to health professionals, and other people involved in their care. For you as the carer, it may help to remove some of the uncertainty about making decisions. It can also make things easier for the patient’s family.

The patient may want to make a specific decision about their future treatment. This is sometimes called an advanced decision. It is a good idea to talk about these decisions with the patient’s healthcare team. For more information on advance care planning, you can visit the National Council for Palliative Care website or call 020 7697 1520, or go to the ‘Wills and probate’ section of


Relevant areas of law

The Mental Capacity Act (2005) aims to protect people who are unable to make decisions for themselves. 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.  There is more information about the Mental Capacity Act on the Department of Health website. 

The person you care for can legally appoint you or someone else to make decisions about their personal welfare, including their health and social care. This is called a Lasting Power of Attorney (LPA). LPAs will only be used if the person who made it cannot make decisions for themselves.

LPAs can take around a couple of months to organise. Some of us found the process complicated, and it was helpful to have legal advice from a solicitor. There is a fee for registering the LPA, but you may not have to pay the full amount. 

The End of Life Care Strategy (2008) may also affect your role as a carer. It aims to promote high-quality care and greater choice for all people reaching the end of their lives. For you and the person you care for, it means that you have the right to discuss the patient’s personal needs and preferences with the people who will support you. It also means that the patient’s care should be well-planned and coordinated by professionals and that the patient’s choices will be respected. For more information on the strategy go to the Department of Health website.


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 that you’re not able 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 the person who is named as the patient’s next of kin. The Data Protection Act (1998) requires any organisation, corporation or governmental body that collects personal information to handle it safely. If the patient would like the people involved in their care to share information with you, the patient should let them know as early as possible. Make sure that the healthcare team involved in the patient’s care know that you are the carer. The patient may also wish to name you as their next of kin.


Talking to the person you care for

If you are caring for someone with advanced cancer, you may notice that they seem depressed or are having difficulty coping. Depression can often go undiagnosed in people with cancer. They may seem worried about the future and express concerns about the end of their life. You may also be feeling anxious, so it could be a good opportunity to explore your concerns together. It could also lead the way to a discussion about advance care planning.

You and the person you are caring for may also find it helpful to talk to the doctor or clinical nurse specialist about getting some emotional support.

There's more information on Macmillan's website about talking to someone with cancer.


Other ideas

Families Facing Cancer can offer you emotional and practical support. Visit their website or call 0844 35 77 959

Alternatively, you can call Macmillan on 0808 808 00 00.

 The National Council of Palliative Care has more information about decision-making and advance care planning. Their booklets can be ordered online or by calling 020 7697 1520.




I hope this information is useful. Again, we'd really like to hear from you if you have any comments or feedback.

You can see more advice from carers of people with cancer about:


Take care,