An important part of supporting people at the end of their life is to have discussions about what they want for their future care.

Advance Care Planning helps to open discussions between patients and health and social care professionals, to find out how patients would like to be cared for and to deal with the practical arrangements when nearing the end of life.

The Planning Ahead document, which has been adopted in Somerset contains these sections:

• Preferred priorities for care – your advanced wishes
• Putting your affairs in order and making a will
• Appointing someone to make decisions for you in the future
• Writing an advance decision to refuse treatment

The sections are designed for you to be able to use when you feel ready and allow you to share your wishes with the people looking after you. You can complete it and share the information with your family and friends and discuss it with the professionals involved in your care. This will allow them to work with you to try to make sure your wishes are understood and carried out.

An important part of supporting people at the end of their life is to have discussions about what they want for their future care. Advance Care Planning helps patients record their wishes and share them with carers and professionals.

You will also find information about the roles of professionals who may be involved in providing care for you or the person you are looking after. There are also links to films which give you advice about symptoms you might have and how to look after yourself and access the support you need.

The Marie Curie Cancer Care booklet ‘Being Cared for at Home’ gives information about being looked after at home, the professionals who can help you, some practical information and how to look after yourself.

Being a carer
A carer is someone who helps another person, usually a relative or friend, in their day-to-day life. There is information about services and groups that can help and support you.

Marie Curie Cancer Care has produced information sheets and film guides which are designed to help you care for a friend or family member with a terminal illness.

There are local Marie Curie Services in Somerset to support you.

Money matters
Finances are often a major problem for end of life care patients and families, because of loss of work or lower earnings. You may have extra costs because of needing to travel for appointments, a disrupted routine, needing new clothes because of weight change, equipment aids or different household appliances, a special diet and child care.

Financial concerns can take up a lot of time and cause a lot of worry. The ‘Managing at home’ section of ‘Information and advice’ has lots of information to help you, but we always recommend that you talk with someone completely independent about your finances.

Macmillan Cancer Support have information about financial support and other organisations that may be able to help. Macmillan grants are one-off grants which cover a wide range of practical needs for adults with cancer. Applications are made on the patient’s behalf by health and social care professionals.

Equipment to help you
You may benefit from adaptations to your home or equipment to help you remain independent. On site there is information about community alarm services and how to find out about equipment that can help you and how to buy what you need.

Voluntary organisations
There are voluntary organisations that can provide various kinds of support and advice for end of life patients and their carers.

Use these links to get more information about any of these services.

Marie Curie Helper
British Red Cross
Age UK Somerset
We Hear You
Penny Brohn Cancer Care
St Margaret’s support groups

Dying Matters is a coalition of 32,000 members across England and Wales which aims to help people talk more openly about dying, death and bereavement, and to make plans for the end of life.

Around 70 per cent of people would prefer to die at home, but around 60 per cent die in hospital. Many of us have specific wishes about how we would like to die, or what we would like to happen after our death.

Knowing loved ones have died where they wanted to be and had the funeral they would have wished can bring enormous comfort to those left behind.

What to expect
Marie Curie Cancer Care and Macmillan Cancer Support have produced a leaflet called End of Life: The Facts which explains to patients and those caring for them what may happen when someone is nearing the end of their life. It also provides a checklist of issues to consider when thinking about how you would like to be cared for.

You can find information about how to explain end of life to children and get help and practical support for children.

What to do after a death
When someone close to you dies it can be a very difficult time emotionally and you may have lots of things to think about and arrange. The government provides information about what to do when someone dies and some of the practical issues you may need to consider. The information includes

• What to do first
• How to register a death – Somerset Council
• Arranging the funeral
• Dealing with someone’s estate and belongings
• Help and support for you

Grief is a natural reaction following the death of someone. But it is a very individual experience and may be influenced by your culture and experience. Bereavement can cause deep sadness, distress and unexpected feelings, such as disbelief, anger, guilt and panic. This extra emotional distress may make you feel very tired and cause other physical symptoms.

You may find yourself feeling acute grief or coping with your grief by keeping busy or distracting yourself from painful feelings.

You may realise you swing between these different ways of managing.

Other people around you may be coping differently from you, so it may seem difficult to connect with each other.

You may also be trying to protect each other from distress. Some people feel overwhelmed and others try to control how they are responding. Some people may feel very vulnerable and others find reassurance in grief.

This may depend on your experiences and personality.

Children also grieve.

It may help you to talk about these feelings, and this can relieve some of the sadness you experience, now or later, especially if you feel vulnerable. You may feel others are avoiding you. This may be because they are embarrassed and do not know what to say. You may need to let them know you want to talk about the person who has died and that you need their support. Particularly if you have children, or work or other commitments, you may need space for yourself in which to grieve. Grieving takes time.

Though it may be difficult to believe it now, most people gradually begin to feel less raw and rebuild parts of their life again. Although that life will be different.

The health professionals involved in the care of your loved one should be able to offer you advice about where to get help and support when you have been bereaved. Speak to them for more information. Most people establish life again after healthy grief. If you do not think you are able to do this please talk to your doctor.

National organisations
Details of other organisations that can help you.

The Bereavement Advice Centre website includes helpful information.

Cruse Bereavement Care is a major national organisation offering support for people who have been bereaved. Please note that the offices are often run by volunteers and you may get an answer phone when you call. But, leave your name and contact details with information about the best time to call you back and they should contact you within a few days

Somerset Area Cruse – phone 01458 898211 – this number covers

• Bridgwater and Burnham-on-Sea
• West Mendip
• Taunton and Minehead
• Yeovil and Sherborne

Bath and District – phone 01761 417250 – this number covers

• Frome
• Shepton Mallet

The line is staffed from 10am to 1pm, Monday to Friday

The Bereavement Register is a free service that helps put a stop to direct mail being sent to people who have died. The NHS does have a record of deaths but sometimes letters are sent automatically before the system is updated. Please accept our apologies if this happens in the days after a death.

Websites for children who have been bereaved

• Winston’s Wish
• Child Bereavement Charity
• Cruse for children and young people
• Grief Encounter
• Rip Rap

Local bereavement support

Hospices
Each of the hospices provide a range of bereavement services for relatives and carers of patients who were previously referred to the hospice.

• St Margaret’s Hospice – Bereavement Support St Margaret’s offers support to anyone who is mourning the death of a loved one who has been cared for by the hospice.
• Dorothy House Hospice Care – Bereavement
• Children’s Hospice South West – Bereavement Support

Other useful contacts

• We Hear You
• Somerset Suicide Bereavement Support Service

The first thing to bear in mind is that children will wonder what is happening. They are sensitive to their emotional environment and will pick up on feelings and changes in mood, despite any attempts to hide them.

If we are not open and honest with them they may think they have done something wrong, or that they are not loved anymore, so it is important to tell them what is going on a supportive way while offering lots of reassurance.

It is probably better to tell them yourself directly, but this might feel too difficult to manage. You might prefer to have someone who works with children in this area telling your child, with you in the room to comfort and reassure them.

Try to be honest with them at all times. A ‘right time’ may never present itself, so it’s more important to get the information across so the child knows what is happening.

This is better than leaving them to ask increasingly difficult questions, which become increasingly difficult to answer. Perhaps consider a regular conversation to see how they are feeling and ask if anything is not making sense to them.

Do not be concerned if your child seems unaffected or ambivalent about the information once you have given it to them. They tend to be more in tune with their emotions than adults, and they will not react or respond just because you expect them to. They often take the information away with them and think about it later on, sometimes at unexpected times such as when they are in the middle of playing.

It is important to offer reassurance and be there to comfort them when they feel they need it. Try to let them decide when to bring the matter up for discussion, as they are usually very good at picking the times when they are best able to deal with it.

Another thing to remember is that children are good at switching on and off from the seriousness of the situation. Studies have shown that a healthy response in times of crisis and during prolonged stress is to switch on and off from confronting the difficulties. This is known as a Confrontational / Avoidant approach and it involves taking time out to switch onto more distracting and pleasant pursuits to give the mind and emotions time to recharge.

Children will have a real need to do fun things as usual and you should continue to make sure they have plenty of opportunities to play and feel that things are normal, even though it is obvious things are not. With children, there is definitely a time for seriousness and a time for play, so try not to confuse the two.

When visiting a patient away from home with children, make sure they have something to occupy their minds. Their sensitivity to emotional undercurrents might cause them to misbehave or else become very quiet, so having something for them to distract them with is always a good idea. They also tend to have shorter attention spans so try not to stay too long during visits and it might be a good idea to take them somewhere fun directly after the visit.

Changes in the appearance of the patient due to weight or hair loss can be explained before the visit so that the child can be prepared. You can explain tubes or changes in the environment, or ask the care team for help. This might prevent them from asking questions directly to the patient, who might be upset by it. The main thing to tell them in preparation is that although the person might look different, they are the same person they were before.

Children have vivid imaginations and will complete the gaps in their understanding with their imagination. This may lead to distress and misunderstanding which could affect their bereavement.

You may not have all the answers to the questions the child might ask, so don’t feel bad about it. It’s fine to say you don’t know the answer to something and it’s more honest than telling them something that isn’t true.

Remember, being honest is what matters most. Stick to the facts and don’t use flowery language. Obscuring the truth and the harsh reality by being evasive decreases the chances of the child understanding what you’re saying to them. Young children understand the words death and dying but only start to understand the permanence of death around five years old.

If you would like to talk with someone who can advise on talking to children, your District Nurse or Social Worker can put you in touch with organisations which may be able to help.

Books that may help young children

• A Dragon in Your Heart – Sophie LeBlanc and Jessica Kingsley
• Dr Dog – Babette Cole
• The Huge Bag of Worries – Virginia Ironside
• Laura’s Star – Klaus Baumgart
• Love you Forever – Robert N. Munsch

Books that may help older children

• The Secret C: Straight Talking about Cancer – Julie A Stokes
• Two weeks with the Queen – Morris Gleitzman
• The Soul Bird – Michal Snunit

Useful websites

• MacMillan Cancer Support: Talking to children and teenagers about cancer. This is also available in a booklet.
• Cancer Research UK – Talking to children
• Marie Curie Cancer Care – Talking to children about your illness
• Winston’s Wish – charity for bereaved children