What is palliative and end of life care?
Death and dying are inevitable. Being able to live as well as possible until we die is something that we all value. The needs of people of all ages who are living with dying, death and bereavement, their families, carers and communities, must be addressed, taking into account their priorities, preferences and wishes. Personalised care in the last year(s) and months of life will result in a better experience, tailored around what really matters to the person, and more sustainable health and care services.
Palliative care is defined by the World Health Organisation as an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-limiting illness, usually progressive. It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems whether physical, psychosocial or spiritual.
In England, the term ‘end of life care’ refers to the last year of life.
For more information see this page NHS England » Palliative and end of life care
What matters to me
If you or someone you care for is in the last 12 months of life, you will likely have questions, thoughts and wishes about how you would like to be cared for.
An advance statement is a written statement that sets down your preferences, wishes, beliefs and values regarding your future care.
The aim is to provide a guide to anyone who might have to make decisions in your best interest if you have lost the ability to make or communicate decisions.
An advance decision (also known as a living will, or advance decision to refuse treatment) is a decision you can make now to refuse specific treatments in the future.
For more about all aspects of advance planning, see the NHS England pages
The exact form you use to record your wishes will depend on where you live. Many places use the ReSPECT form, but other forms are in use as well.
Your healthcare professional should talk to you about an Advance Care Plan: this is an opportunity for you to express what is important to you. It is an opportunity to talk about any treatment you don’t want to receive. It will also be a chance to talk about pain relief and other medication, as well as feeding and resuscitation. This is likely to involve more than one conversation: take your time, ask questions and remember that you can change your mind.
You can involve your family and those important to you in these discussions if you wish to.
If your healthcare professional does not talk to you about an Advance Care Plan, it is important to start the conversation yourself. Starting to talk about your illness – NHS (www.nhs.uk)
You may have certain cultural, personal or religious needs you want to be met before or after you die.
Advance Care Planning should include conversations about where you would prefer to die. This may be at home, in a care home, or in a hospice or hospital.
Your Advance Care Plan should be reviewed as your needs change. Visit the NHS England website for more information on Advance Care Planning.
You might have funeral plans in mind. You might have an opinion about organ donation. You will need to make a will. These should be included in your Advance Care Plan.
You don’t have to discuss and decide all of this at once. It’s a lot to go over: tackle one thing at a time.
You can change you mind if you want to.
The result of all this will be that your wishes are written down so that you don’t have to keep telling people what’s important to you.
Your Advance Care Plan needs to be easily available and shared with everyone involved with your care, as well as with your family.
Where can I get help?
There is a lot of help available through national and local organisations. Your GP will often be the best place to start.
National sources of help include:
- Macmillan – focused on support for people with cancer
- Marie Curie – care and support for anyone with a terminal condition
- Hospice UK – find the nearest hospice to you
- Cruse Bereavement Care – for help with grief after someone dies
West Essex resources
For west Essex residents you may be able to get help from the palliative care teams at the care co-ordination centre run by EPUT. This provides access to district nursing and community matrons. You can contact the service on 0300 123 5433 between 8am-9pm 7 days a week.
Advice and help is also available from the local hospices:
- St Clare Hospice
- Farleigh – for south Uttlesford
- Saint Francis Hospice
For children and young people, contact Keech Hospice.
Essex County Council has resources on what to when someone dies, support for carers and bereavement support.
Hertfordshire resources
For East and North Hertfordshire residents, you may be able to get help from the palliative care teams at the Lister
Hertfordshire Community NHS Trust also provides palliative care services for patients in North Herts, Stevenage and Royston.
For South and West Hertfordshire residents you may be able to get help from the palliative care service provided by CLCH.
Advice and help is also available from the local hospices:
HertsHelp is Hertfordshire’s one stop shop for all your help and support needs. By phone or on the website staff can quickly direct you to the organisations that can offer you help, whether that’s with bereavement support, money issues or carer’s support.
Support for children and young people
National services
Resources Archive – Together for Short Lives Family resources created to support anyone who is caring for, or has cared for, a child with a life-limiting or life-threatening condition.
Together for Short Lives Family support hub: for families caring for a life-limited or life-threatened child to find the support they need
Hospice care finder Hospice UK hospice finder
Local services for Hertfordshire and west Essex families
Keech children services Children’s hospice services for Hertfordshire
Haven house Children’s hospice services for East Hertfordshire and west Essex
Noah’s ark hospice Children’s hospice services for south and west Hertfordshire
EACH East Anglia’s Children’s hospice services for west Essex
Hertfordshire Children Community Nursing : Ring the helpline for support
West Essex Children Community Nursing Children’s Community Nursing – Essex Child & Family Wellbeing Service
Child and young person’s advance care planning
Where can I get help in an emergency?
Out of hours care is usually provided by the team in charge of your palliative care. When you are first referred to the palliative or end of life care team, this is one of the questions to ask. You will want to have a phone number to call in an emergency.
You can also always call 111 if you need help or support, and in an emergency call 999.
People sometimes run out of important medication outside usual business hours. The NHS find a pharmacy site will help you find one near you that might be open later.
Some hospices provide out of hours advice, even for people who are not in their care.
- North Hertfordshire – 01462 679540 (Garden House Hospice Care)
- East Hertfordshire – 01707 382575 (Isabel Hospice)
- West Hertfordshire – 01923 335356 (Michael Sobell Hospice)
- East Herefordshire/west Essex – 01279 773 700 (St Clare Hospice)
Where can I get more information?
Wills
The Law Society lists all solicitors in England. The Find a Solicitor service helps you search by the areas they specialise in: from the drop-down menu, choose “Private Client – wills” and you’ll get a list of solicitors near you.
You don’t have to use a solicitor, although it is recommended for many people. The Society of Will Writers represents specialists who can also help write a simple will. The Find a Member page on their site will help you get started.
Some charities offer a free will-writing service in exchange for you leaving them some money in your will. Keep an eye out for these, especially during Free Wills Month.
Bereavement support
Everybody responds differently to the death of someone they know. For some people, grief is immediate and deep, for others it can build slowly. There’s no “right way to grieve” – we are all different. However you’re affected, help is available if you feel it’s starting to get too much.
At A Loss provides lists many services offering bereavement support, both national and local.
Many hospices provide bereavement support. You can find your local hospice via the Hospice UK site.
General support
HertsHelp provides a one-stop shop for a range of support services across Hertfordshire. In west Essex The Essex Wellbeing Service offers similar support.
Organ donation
Donating organs can help other people after you die. However, some people have personal or religious reasons they don’t want to be a donor. Either way, it helps people if you make your wishes known. To find out more on the subject, visit the NHS Organ Donation site.
Funerals
Funerals can be expensive, but there are a lot of options available. These both keep costs under control, but also ensure you get the send-off you want. You don’t have to have a “traditional” funeral, but you can if you want to.
The National Association of Funeral Directors represents bigger outfits, while the National Society of Allied Independent Funeral Directors represents smaller companies. Both organisations require their members to follow a code of conduct to ensure good, caring service. Both websites have a search function to help you find reliable funeral directors near you.
What happens when someone dies?
Unlike our ancestors of a hundred or more years ago, many of us have never witnessed someone dying.
This page from Hospice UK provides information on what to expect if you are with someone in their final days and hours. There are changes you will see that can be distressing for you, but are usually not a source of pain or stress for the dying person. Good end of life care will anticipate their needs so that the process is as peaceful, calm and dignified as possible.
The GOV.UK website provides information on what to do when someone dies.
Immediately after someone dies, there may be specific rituals or prayers depending on the person’s culture or faith. It’s important to share these ahead of time with the people providing care, so that everyone understands what’s happening and why it’s important.