Here we provide information to help you make decisions about work and advice about the types of financial support you may be able to access. They also provide information to help you with future care decisions (also known as advance care planning).
When you find out that you have incurable cancer, if and when you choose to stop working is a very personal decision. There is no right or wrong answer and it's important to do what feels right for you. Some people wish to continue working for as long as possible and for others this might seem like a financial necessity. There may also come a point when you feel too unwell to work.
It's important that your employer is understanding and flexible in their response to your needs at this time, and that you feel respected and supported by them.
Staying at work
Everyone living with cancer is protected under the Equalities Act 2010 (in England, Scotland and Wales) or the Disability Discrimination Act 1995 (in Northern Ireland) against unfair treatment in the workplace. This means your employer can't sack you or make you redundant because of your illness. They must also make reasonable adjustments to accommodate your needs at work, which might include altering your working hours or reallocating some of your duties.
However your employer may be able to end your employment on grounds of capability because of your health issues. Organisations such as Citizens Advice can help ensure that you know your rights and the support available to you, and Macmillan offers comprehensive advice about work issues.
For most women with incurable cancer there will come a point when they choose to stop working altogether. This may be to spend more time doing things that give them pleasure or it may be because they are too unwell to continue working.
If work has played an important role in your life, or if you feel you have not had a choice in the decision, stopping work may be particularly difficult to cope with. It can be useful to talk to friends, family, your clinical nurse specialist (CNS) or your GP about how you are feeling. If you would prefer to speak to someone further removed from your personal situation, you might want to use a professional support service.
Adapting your home
There may come a time when you consider adapting your home or getting some specialist equipment to make day-to-day life a little easier. This could range from a foam cushion to ease discomfort when you are sitting down, to having parts of your home modified or purchasing special furniture. If this is something you are considering, speak to your CNS about what support is available to you.
You might be able to get some free equipment from your local social services department or on a long-term loan from the NHS, or you may be entitled to some financial support depending on where you live in the UK.
Benefits and other financial support
There are different types of benefit entitlements available to you depending on your financial circumstances. These include benefits that replace your earnings, help with housing costs or extra costs resulting from your illness.
Many people are unaware of the financial help and support available to them and large sums of money go unclaimed each year. Macmillan has a benefits helpline staffed by trained advisers that can be reached on 0808 808 0000.
It's also worth regularly checking the benefits that you are entitled to because these may change if your circumstances change.
Advance care planning
There may come a point when you start to think about the future and what preparations you want in place when you die. This is normal for everyone – some people think about the 'what ifs' when significant events happen in their lives such as buying a house, getting married or having children.
Thinking about the future may also happen when your cancer makes you more poorly. Perhaps you or the doctors might be thinking about stopping chemotherapy treatment, and supporting you to control your symptoms, rather than trying to control the cancer. You may be a person who likes to plan ahead, or perhaps a hospital admission has made you think about the what ifs.
Advance care planning is a way to think, discuss, plan, document and share, if you want to, your views, thoughts and decisions about future care. It is often helpful for your friends, family or the doctors and nurses – as well as you – to know what your future wishes and decisions are about care, so that they can support and help you as much as possible.
Advance care planning could include several things.
- Advance statement – this is a way for you to write down and tell others your future wishes and decisions. This could include anything from whether you would want to be treated in hospital if you were unwell, who is important to you and you would want to be involved in decision making, and whether you would want hospice care at the end of your life, to the simple pleasures such as your favourite fragrances, songs and music, or wanting to have your hair and makeup done every day because this is important to you. Sometimes people also add their wishes about their funeral. Nothing is too little or too big to be shared.
- Advance decision to refuse treatment (ADRT) – this is a document where you write down specific medical treatment that you do not want in the future, which might include treatment to keep you alive. This is used if in the future you cannot say what you want yourself. Previously often known as a 'living will', it must be signed and witnessed, and is considered to be a legal document to ensure your wishes are upheld. An ADRT may become invalid if you go on to make a lasting power of attorney (LPA) and if you give your LPA the authority to accept or refuse treatment on your behalf.
- Lasting power of attorney (LPA) – this is a person nominated by you to speak on your behalf. There are two types of LPA and you can choose to make one type or both:
- Property and financial affairs – you can give this person the power to make decisions about money and property, for example managing a bank account or paying bills. This person can speak on your behalf from any time that you authorise them to do so.
- Health and welfare (in England, Wales and Scotland but not in Northern Ireland) – you can give this person the power to make decisions about things like your daily routine and medical care. It can only be used if you are unable to make your own decisions or express your wishes at the time. Having a health a welfare LPA can be reassuring as it means someone you trust will act on your behalf if you become seriously unwell. This might include accepting or refusing medical treatment on your behalf. It is very important to choose someone who understands your wishes for treatment, especially if you know there is specific treatment that you do not want in the future or have thought about making an ADRT. An ADRT and LPA can't exist at the same time so the most recent one will be used. Find out more about setting up power of attorney and the different types across the UK.
- Best interests – this is the decision making process for taking any medical or care action on your behalf if you're unable to contribute to the decision-making process. Advance care planning activities such as advance statements, an ADRT and LPAs are very useful to ascertain what would be the best decision to make in a person's best interests (if they cannot say so themselves).
- Do not attempt cardio pulmonary resuscitation (DNACPR) – this is a specific discussion between you and your doctors to decide that you do not want your heart to be restarted if it should stop. This can be a really difficult decision. Sometimes the doctors may advise you that resuscitation would be unsuccessful or some people feel as they near the end of their life that they do not want this medical treatment. You may wish to initiate this discussion, or sometimes a doctor or nurse may discuss it with you if they feel that it is unlikely that your heart could be restarted due to your condition. The Resusciation Council (UK) has excellent FAQs where you can find out more.
Making or updating a will
By making a will, you can ensure that in the event of your death, your assets and belongings go to those who you feel should or would benefit most. Your will should set out:
- who you want to benefit
- who should look after any children under 18
- who is going to sort out your estate and carry out your wishes after your death (your executor).
You can write your will yourself, but you should get advice if your situation isn't straightforward. You also need to get your will formally witnessed and signed to make it legally valid. Find out more about making a will.
For some people it's important to think about what happens to their social media and online accounts/presence after they have died. Others like to create online goodbye messages. Websites such as Dead Social provide a variety of ways to think ahead for your digital legacy. For some people it can be comforting to think that they have organised this.
Communicating your wishes
There are clinical handover systems that ensure that this important information is communicated to doctors, nurses and paramedics who might be called unexpectedly to see you at the weekend or at night. This means that they are aware of all the important decisions you have made about the next steps in your treatment or care. It's worth asking your GP or specialist palliative care nurse about this if you would like specific information about you shared in this way.
Talking about advance care planning
It's not always easy to talk about advance care planning or any of the topics covered here. There is no right or wrong way to feel about or discuss these things. Consider what is most important to you – is it about making specific decisions or about talking with those you care most about?
There are lots of ways to think and talk about advance care planning. Take as much time as you need to. Some of the questions you might want to consider:
- What is your understanding now of where you are with your illness?
- How much information about your illness would you like?
- If your health worsens what are your most important goals?
- What are your biggest fears or worries?
- How much does your family know about your priorities or wishes?
- Are there any trade-offs you are willing to make or not?
- What would a good day be like?
- Who and what matters to you?
- How do you like to talk about these things?
However you want to talk about these things will be personal to you; there's no right or wrong.
Thinking about a funeral
You may have been to funerals that you thought had aspects that you would want to include in a celebration of your life – or you may know what you definitely don't want. Talking about these thoughts might help those close to you feel confident that they can help you carry out your wishes. Some families might find this difficult and avoid it. If this is the case you may need to write things down.
How much you specify is up to you. It might be anything from the type of funeral to every last detail – music, flowers, or even a message for those who attend.
You can also do a letter of wishes, which is addressed to your executors, giving guidance, listing your assets, giving general information, detailing funeral arrangements and explaining your will. Whatever makes you feel comfortable and confident that your wishes will be carried out.
Finding additional support
There are lots of organisations that can provide practical advice and support for thinking about the topics that have been discussed here. The resources below might be helpful to look at now, or to keep for when you feel ready:
- Dying Matters is a coalition across England and Wales that aims to help people talk more openly about dying, death and bereavement, and to make plans for the end of life.
- Macmillan Cancer Support has very good information about planning for the future with advanced cancer including a booklet called 'Your life and your choices'.
This information is reviewed regularly and is in line with accepted national and international guidelines. All of our publications undergo an expert peer review and are reviewed by women with ovarian cancer to ensure that we provide accurate and high-quality information. To find out more take a look at our information standards.