End Of Life
This section of information is specifically for those that have been told that they are at the end of their life. This may mean that you are likely to live for just a year, a few more months, weeks or just days.
You may have been told your condition is no longer curable and you will now receive Palliative care for a much longer time. This is not the same as End of Life Care and for that reason we would suggest you go to the Palliative care section of the website, where you will find more relevant support for you and your family.
If you are a partner, carer, family member or friend of someone who is has been told that they are at the end of their life, this section of the website may be helpful to you. Please also go to the Carers section of this website which holds additional information that may be useful.
Introduction
It’s not easy to think about the end of your life, or the life of someone you care about. We hope that reading this webpage will help to guide these thoughts and help you identify options that best fit your personal circumstances. The first section below holds information on emotional support, especially the importance of talking and listening to reduce feelings of distress for everyone involved. Following this, you will find sections on practical information about options for ongoing care, financial support and more. Please use this information to help you consider which options may be best so that you can feel safer and in control.
Your Consultant and Nurse Specialist or Care Team are likely to be the first people that will talk to you about your cancer and why it can no longer be treated. They will be able to guide you in the first instance as to what may happen next and ensure you have enough time to ask questions.
It may be difficult to take in all the information at first. Remember you can always ask for a further chat to confirm your understanding and ask further questions. You might want other members of your family, or a close friend, to be with you to help remember all that is said and they may have additional questions. As time goes on your healthcare team will be close at hand to help answer what ever questions may arise.
You may also want to look at our section on Palliative Care, where we cover other useful topics, especially if you are active and enjoying life and not requiring much additional support at the moment.
Please contact The Cancer Wellbeing Centre for further information.
EMOTIONAL SUPPORT
Counselling and Complementary Therapy Teams
How can counselling help? Cancer can bring many changes to someone’s life. It can also impact on friends and family. Counselling can help people cope with the many emotional issues that cancer may cause.
Counselling provides a safe, confidential and supportive space where you can talk about whatever is important to you. Your counsellor will not give you advice or tell you what is best for you. Counselling can support you to make sense of your situation and help develop coping strategies before, during and after your treatment.
The complementary therapies we provide are offered by Helen Rollason Cancer Charity, with a holistic approach to health and are therapeutic and restorative rather than pampering. All the therapists are qualified to the standards required by the associated professional bodies and are well supervised. It is usual for a preliminary assessment and discussion to take place prior to actual therapy so a programme can be tailor-made. A limited number of sessions is normally offered, but re-referral is possible.
For more detailed information please refer to the Counselling and Complementary Therapy sections of this website.
The Chaplaincy Team
What support can we provide?
We are here to listen and offer confidential, respectful, compassionate support to people of all faiths and beliefs, as well as those who do not have a particular religious belief.
We can support you and your loved ones if you are adjusting emotionally or spiritually to illness, searching for meaning and purpose in difficult times, or preparing for loss and bereavement.
You can explore with us the things that are important to you and your loved ones. This may include considering spiritual resources such as mindfulness, poetry, music, engagement with the natural world, religious texts and objects, prayers etc., which can support you in times of rehabilitation and change.
We are at the hospital on Monday to Friday 8am-4pm, and available for urgent matters 24/7. You can contact us in the following ways:
Tel: 01206 747474 and ask for the on-call chaplain
If you are in Colchester Hospital why not drop in to see us at the Chaplaincy Centre or visit the Chapel which is set aside as a quiet, reflective space for everyone. Finding the chaplaincy facilities
The chaplaincy team is here for everyone, regardless of age, disability, race, social background, religion or belief, gender, or sexual orientation.
Coping with advanced cancer
Macmillan has published a booklet for anyone who has been told that their cancer has spread or come back, and their relatives and friends. We look at the emotional and practical issues that may come up, along with treatment-related decisions and the impact the illness can have on loved ones.
Starting conversations about the end of life
Dying Matters is grouping of individuals and organisations whose aim is to help people talk more openly about dying, death and bereavement, and to make plans for the end of life. Their website contains several resources that you may find useful: a webpage and leaflets designed to help conversations, a blog, an online forum and links to other services and organisations. Particularly relevant to emotional support is a webpage "Talking about Death and Dying" which contains practical guidance, information and resources about how to say goodbye; the importance of good listening skills; and what the dying may experience as death approaches. There is also guidance on ways to offer spiritual support. Also available are several relevant leaflets which are available to download.
Their five leaflets, available to print or in digital format, help you deal with different aspects of death, dying and bereavement.
1. Things to do before you die
4. Talking about dying with people affected by dementia
Support for children who have a parent at the end of life
On this website, refer to information on Family Support or books available for children.
You may also wish to refer to this leaflet that gives some ideas about talking to children: Talking about dying with children.
MANAGING YOUR CONDITION
Help with managing your medication at home
If you have questions about your medication, please contact the Medicines Advice Helpline, Monday-Friday 9am-5pm
Colchester Hospital Tel: 01206 742161
Ipswich Hospital Tel: 01473 703604
For further information follow the link to Medicine Advice
In addition, Marie Curie - Managing Medications gives help and guidance about managing medications.
Help with managing fatigue and extreme tiredness
Fatigue is not like tiredness that goes away after a rest or a good nights sleep, it is something that people live with and have to manage. Understanding it and knowing how you can manage it may help to give you a better quality of life.
The Marie Curie website provides information and support on fatigue, topics such as what is fatigue, what causes fatigue, how to manage fatigue, and supporting someone with fatigue (and more). Alternative information on coping with fatigue is available from the Macmillan booklet which can be downloaded from the link below.
Macmillan: Coping with fatigue
Marie Curie: help with fatigue when you have a terminal illness
OPTIONS FOR ONGOING CARE
Introduction
Your Consultant and Nurse Specialist will be able to talk to you about what support and care you are likely to need and can help you make decisions. You can receive end of life care in your own home, in a care home, in hospital or a hospice.
NHS: Where you can be cared for
As your illness progresses, your day-to-day life and the kind of support you need may change. It can be helpful to think about where you’d like to be cared for now, in the future, and also in your final days. These may be different places and you might change your mind about where you want to be cared for over time. The Marie Curie website provides a range of issues you may wish to consider to help you establish your personal priorities and make decisions about where you wish to be cared for.
St Helena Hospice - Colchester
The Hospice can help you manage physical and emotional symptoms following a diagnosis of cancer that cannot be cured (palliative or end of life). The Hospice and are there to support your family and carers.
If you are referred to the Hospice, the team will assess your needs and talk to you and your family about the options available to you. A plan of care will be agreed which is based on your needs, not your diagnosis, and will address your physical, psychological, spiritual and emotional needs.
Where appropriate, the aim is to support you to stay at home and live as full a life as possible in familiar surroundings.
The hospice can provide a wide range of services such as a 24-hour advice line (more below), occupational therapy, counselling, courses for carers and in-patient end of life care. For more information on these and all other services available please refer to the St Helena Hospice website.
How to make a referral to the Hospice Services
Contacting St Helena Hospice and associated services:
General Enquiries Tel: 01206 845566
Singlepoint is a 24-hour advice line. Advice is given by experienced nurses to those who are ill, their families and those who provide care for those living in North East Essex with a life limiting and progressive illness.
Singlepoint 24hr advice line Tel: 01206 890360
NHS Continuing Healthcare
If you have continuing and complex health care needs, the NHS might pay for a package of care for you.
NHS: Continuing Healthcare website gives details of the scheme, including a link to a checklist for an initial assessment which will be completed by a nurse, doctor, other healthcare professional or social worker.
Marie Curie website provides further information also: Marie Curie: NHS Continuing Healthcare
Support to remain at home
If this is your preference, then you have a choice of support should you wish. You may have a partner or family member who are able to look after you. You may choose to pay for someone via a Care Agency or have the services from an organisation such as the Hospice at Home team or from Marie Curie.
Marie Curie Nurses are specifically there to help provide nursing care to people who are at their end of their life wanting to stay in their own homes. This service can be requested via your District Nurse or GP.
Finding a Care Home in Essex that provides End of Life support
For those who wish to consider a care home in Essex, the following website may be helpful. This could be a consideration for respite care, a place of residence or a place to go for end of life care. For each care home, the site provides a wide range of information including types of care provided, photos and reviews.
Carehome: Care homes / Nursing homes with palliative/ end of life care in Essex
Additionally, the Care home website provides a range of information on care homes, such as finding and paying for a care home, moving in to a care home, legal advice and end of life care.
Equipping your home
Essex County Council has a range of information, guidance and services that may be helpful: equipment at home, using technologies and adapting your home.
The NHS Community Equipment service provides patients with equipment (such as hoists, grab rails or loan of a hospital bed) so that they can be independent for longer.
If you are returning home from hospital the Red Cross may be able to provide support to help with equipment or adaptations during the first few weeks.
Essex County Council, Equipment at home: There are many simple pieces of equipment that may help you to stay as independent, comfortable and safe as possible in your own home, such as:
Preparing and cooking food: Kettle tippers and lightweight kettles. Bottle, jar and tin openers. Utensils with large, long, weighted or curved grip.
Getting dressed: Button hookers, dressing sticks and zip pullers. Aids to help you put on your socks and stockings. Long-handled shoe horns to make it easier to get your shoes on and off
Washing and cleaning: Tap turners, lever taps and automatic taps can help if you have problems with your grip. Bath board, bath seat or bath lift can make it easier and safer to use the bath. Shower boards and swivel seats to help you get in and out of the bath
Using the toilet: Raised toilet seats and toilet rails can make it easier to get on or off the toilet. Long handed bottom wipers can help you clean yourself after going to the toilet. Waterproof bedding and mattresses can help manage incontinence
Technology, especially when internet-connected, can provide a lifeline for many people. For example:
alarms can alert others if you might need help
allowing you to control your home environment
keeping you connected to friends, family and your community
Get equipment to stay independent: Care technology
Essex County Council, Adapting your home: You may wish to consider making some adaptations to your home such as adding grab rails or more. The website below includes a link to an online assessment (AskSARA) to help you identify what adaptations might be most suitable based on your personal circumstances.
Age UK personal alarm monitoring: The Age Co personal alarm will give you the security and confidence to continue living independently in the home you love. The personal alarm service is simple to set up, easy to use and reliable, just the press of the button on your pendant to get help in any emergency, including falls, cold callers, fires or if you feel unwell or are distressed. With an average alarm call response time of just 5 seconds, you can be confident of getting help when you need it most. There are three UK-based Emergency Resolution Centres’, so no alarm call goes unanswered.
Tel: 0800 023 4327
Community Wheelchair Services and Equipment Services
Tel: 01255 201771
Website: NHS Wheelchair Service
Living Well Essex
The site has been created by Essex County Council in partnership with Healthwatch Essex and aims to help Essex people take care of their health and well-being, manage health conditions, and find information about support and services in the local area. They also provide information on benefits and finances, staying safe, and tips on staying healthy and active.
Tel: 0345 603 7630
Website: Living Well in Essex
FINANCIAL SUPPORT
Financial support (Essex County Council)
You may be entitled to access financial support if you are needing to be cared for in a Care Home, or wish to have a carer in your own home using Direct Payments.
Essex County Council: Paying for your care
The County Council also offers a Care and Support Assessment which helps to identify what support you need in your day to day life. It will help see if you are eligible for support from the council. They also complete a financial assessment to see how much you need to pay towards care. The assessment may help with arranging equipment, adaptions and services to help you at home.
Benefits
We strongly advise that you get in touch with the Macmillan Benefits Team as soon as possible so that you can be assessed to see if you are entitled to any financial support. If you are you eligible for any benefits, they will ask your GP/ Nurse Specialist to complete a form called a DS1500 which will ensure your claim will be fast tracked.
Macmillan Benefits advice service
Tel: 0808 808 00 00 (08:00 - 20:00 7 Days a week)
Financial Support for Carers
If you have someone looking after you, whether that be a partner, family member or friend, they are entitled to ask for a Carers Assessment. They do not have to be living with you. Depending on the outcome of the assessment you will find out what support or financial support you may be entitled to.
Our factsheets | Carers UK - Guide to getting help and support in England
Essex County Council: Carer’s assessment - to request an assessment.
Additionally, if someone is caring for you for more than 35 hours a week and fit the appropriate criteria, they may be eligible for a Carers Allowance.
PLANNING AHEAD
Introduction
Macmillan has published a booklet to explain how you can plan ahead for your future care. It discusses creating a Lasting Power of Attorney, writing down how you'd like to be cared for using a Preferred Priorities for Care document and writing Advance Decisions to Refuse Treatment. It also has information about making a will, organ and tissue donation, and funeral planning.
Website: Macmillan: Planning Ahead for End of Life
Dying Matters has published both a webpage and a booklet that will help you think ahead about things like making a will, deciding what kind of care we’d like, or by making clear our wishes. This can make the last days easier and the time after our death easier for our families and friends.
Website: Dying Matters: Planning Ahead
An alternative view is available at the Every Moments Count website. National Voices and the National Council for Palliative Care in partnership with NHS England have produced a document that may prompt you to think about significant matters such as quality of life, the importance of people supporting you and having honest discussions and plans. Supporting these areas are topics such as Advance Decisions, Advance Care Plans and Lasting Power of Attorney.
Website: Every Moment Counts
Personal and financial information summary
Macmillan has developed a printable checklist that can provide for you and your family/ carers a summary of important information and supporting documents, including where these can be found.
Advanced statement about your wishes
This is a written statement that allows your wishes to be known to those providing your future care, should you lose capacity to make decisions or unable to communicate them. This may involve any religious or other beliefs you may have, it may include day to day living aspects such as to your favourite food, drink, who you wish to have visit you, who you may wish to be consulted with about your care.
It is not legally binding but lets others know what you would like so that those caring for you can act in “your best interest “when you are no longer able to tell them yourself.
Advance decision
This document is also known as Living Will or Advance Decision to Refuse Treatment. It is a legally binding document as long as it meets the criteria for it to be considered valid and applicable. It lets your family, carers and health professionals know your wishes about refusing treatment if you are unable to make or communicate those decisions yourself.
Age UK Fact sheet - Advance decisions, advance statements and living wills
Lastin Power of Attorney (LPA)
These are legal documents that are registered with the Government to enable you to appoint one or more people that you wish to make decisions on your behalf. There are two types of LPA: One for Health decisions and one for Financial decisions. It can take up to 8- 10 weeks to register.
UK Government: Make a lasting power of attorney
UK Government: Forms for making a lasting power or attorney
UK Government: general information on acting as an Attorney
There is a fee for registering an LPA but if you are on certain benefits you can apply for a reduction or exemption
INFORMATION ABOUT FUNERALS
Planning a funeral
You may wish to organise this in advance yourself or you may wish to talk it over with others. The resources below may help you consider options and determine what is most important to you and those around you.
If you are choosing to leave others to plan and organise, it may be really helpful if you just let them know if you have a preference for a burial or cremation and maybe where you would like your body or ashes to be scattered.
Website: How to arrange a funeral | Hospice UK
The Marie Curie website provides so much information on all aspects of end of life, including funerals. The Planning your own Funeral page provides a checklist of things to consider, the importance of making your wishes known, options for paying for your funeral and more.
Website: Marie Curie: Planning your own Funeral
Final Fling is an online community to help people accept their mortality and plan for the end of life. It offers life planning tools to help people sort out their affairs, a Marketplace to help with things such as finding celebrants, and the “Big Fat Blog” which provides tips on dealing with a death, organising a funeral and more.
Website: Final Fling
Colchester County Council advice on Arranging a Funeral
Supporting children and vulnerable people
On this website, refer to information on Family Support, as well as books available for children.
If a child will attend a funeral at the Cemetery, there is useful advice here.
Marie Curie offers helpful advice if someone attending the funeral has dementia, learning difficulties, or mental health problems. Marie Curie: Supporting vulnerable people at a funeral.
General information sources relevant to funerals
Money Advice Service: Arranging your own funeral without a funeral director
Good Funeral Guide: Natural burials and Green funerals
Funeral Celebrants: To find a Celebrant in Essex
Funeral Guide: Find a Funeral Director and compare prices
Money Advice Service: Help managing money after someone dies
UK Government: How to get help with funeral costs
Local information
Colchester Crematoriums and Cemeteries: The website contains information about burials, cremations, stonemasonry and more.
Tel: 01206 282950 Email: cemetery@colchester.gov.uk
Address: The Crematorium Office, Mersea Rd, Colchester, Essex. CO2 8RU
For full details on the different types of memorials and prices, please email cemetery@colchester.gov.uk.