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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.
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:
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
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.
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.
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.
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.
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 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 direct.gov.uk
Relevant areas of
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.
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.
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.
and sharing information
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.
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
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.
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.
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:
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who can help.
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