End of Life Care
End of life care refers to health care of those with a terminal condition which has become advanced, progressive and incurable. People often want to spend their last days at home and this is usually possible with the right planning and support.
More people are starting to make 'end of life plans' to make it easier for others to support, and carry out their wishes, when the time comes.
When someone is dying:
- If you know that someone is going to die, tell everyone so it doesn’t come as a shock
- Talk about death openly and honestly
- Support each other. Acknowledge people’s feelings and their different needs
- Don’t forget to look after yourself. Self-care is important
- If you can, find out about the persons wishes and funeral arrangements
- If you will not be able to be with the person whilst they are ill or dying connect with them via phone or video call if you can
You have the right to express your wishes about where you would like to receive care and where you want to die.
You can find more information on your rights to make decisions on the Compassion in Dying website
It goes against all of our instincts to plan for our death. Death can feel taboo, or scary. People have different attitudes towards death depending on their life experiences and culture. But talking about what you want today, makes it more likely that your wishes will be carried out in the future. It will also help your family to cope.
The NHS has some useful pages to help with these difficult conversations.
Choosing where to die
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 in the future and in your final days. Telling people your preferences and planning ahead makes it more likely they can understand and follow your wishes. Marie Curie have a useful webpage on this subject.
Look for a sign that the other person is open to talking about the future. They might mention retirement, or someone they know dying.
You could start with a question: "have you ever wondered what would happen..."
Sometimes we worry about hurting others by having difficult conversations. But people are more often hurt by the conversations that didn't happen.
Dying Matters has created a to do list around having conversations on end of life care.
Care plans
These have become more common, as more people aim to take control and have a 'good death'.
This includes thinking about:
- whether you want to be resuscitated
- living wills and lasting power of attorney
- decisions on treatments and interventions
- funeral and burial plans
Find more information on end of life care plans on the Compassion in Dying website , and end of life planning on the Age UK website.
Steps you should consider
If you make an Advance Statement, Advance Decision or Lasting Power of Attorney, it is important that the people involved in your care know about it. There are things that you can do to make people aware of your wishes:
- Ask your GP to keep photocopies with your medical records.
- Give photocopies to anyone who is regularly involved in your care. This could be a consultant, social worker or your local ambulance service.
- Give photocopies to people you know and trust. If you are admitted into hospital, it is important that anyone contacted knows of your wishes.
- Keep a copy with you, preferably the original so that you can review it on a regular basis.
- You can contact Compassion in Dying to request a Notice of Advance Decision card to keep in your bag or wallet.
- The Office of the Public Guardian has a register of all LPAs. Searching the register can take a long time, so it is important to show anyone involved in your care your registered LPA form.
- MedicAlert makes jewellery for people who need to provide important information in an emergency. There is an annual fee and an extra charge for jewellery. For more information visit: www.medicalert.org.uk
- Order a free ‘bottle’ from Lions Club International to keep a copy of your Advance Statement or Advance Decision in the fridge. Paramedics should know to look for the Lions symbol when entering someone’s house. To order call 0845 833 9502.
What is ReSPECT?
ReSPECT stands for Recommended Summary Plan for Emergency Care and Treatment.
The ReSPECT process creates a personalised recommendation for your clinical care in emergency situations where you are not able to make decisions or express your wishes.
This plan can be for anyone, but will have increasing relevance for people who have complex health needs, people who are likely to be nearing the end of their lives, and people who are at risk of sudden deterioration or cardiac arrest.
Some people will want to record their care and treatment preferences for other reasons. You can find out more on the Resuscitation Council UK website.
Information on Power of Attorney can be found on the Mental Capacity and Planning for the Future page.
General Bereavement Support
Should these be directory entries rather than listed on here?
Cruse
We help people through one of the most painful times in life – with bereavement support, information and campaigning. We provide expert bereavement and grief support.
Overview - Cruse Bereavement Support - Peterborough & Huntingdonshire Area - NHS
DrugFAM
DrugFAM offers a range of support services to families, friends and carers who have been bereaved by addiction to drugs or alcohol.
Our services provide opportunities for you to share your individual experiences of loss with our dedicated bereavement team.
0843 122 5434 - Office number
0300 388 3853 – Helpline (7 days a week, 9.00am – 9.00pm)
Dying Matters
Many people rely on friends and relatives to support them through a bereavement, but there are different types of services available that can also help if you need them. You might want to speak to somebody if:
- You want to find out more about your feelings and reactions to someone’s death
- You want to talk to someone about your feelings and would like bereavement counselling
- You want practical information, like how to organise a funeral
Where to get bereavement support | Hospice UK
NHS
Bereavement, grief and loss can cause many different symptoms, and they affect people in different ways. There's no right or wrong way to feel. If these feelings are affecting your life, there are things you can try that may help.
Get help with grief after bereavement or loss - NHS
Sue Ryder
The death of someone close to you can be devastating. Here, you’ll find information and advice to help you cope with the grieving process.
Helping you cope with grief | Sue Ryder
The Good Grief Trust
We want to help you find the support you need as quickly as possible. You will find stories from others who have had a similar loss, practical and emotional support and signposting to a choice of immediate tailored local and national support on each of our pages below.
Our hope is that you find useful information, helplines, advice and encouraging stories from others to help you in this most difficult of times and to find a way forward with your life.
The Loss Foundation
We are the UK’s only charity supporting those bereaved by a loved one’s death from cancer. We offer grief support events at any stage of loss, connecting you with others who understand.
The Loss Foundation – National cancer bereavement charity
Widowed And Young (WAY)
Helping to navigate life after loss can be difficult. WAY is a UK charity that offers a peer-to-peer support network for anyone who's lost a partner before their 51st birthday – married or not, with or without children, inclusive of sexual orientation, gender, race and religion.
WAY Widowed & Young - Bereavement support UK
Bereavement Support for the Death of a child
Child Bereavement UK
Child Bereavement UK helps families to rebuild their lives when a child grieves or when a child dies. We support children and young people (up to the age of 25) when someone important to them has died or is not expected to live, and parents and the wider family when a baby or child of any age dies or is dying.
Child Death Helpline
The death of a child is unimaginable unless it’s something you’ve been through yourself. That’s why our helpline is operated by a dedicated team of volunteers who are all bereaved parents. If you’re a parent who has lost a child of any age, under any circumstances, and however recently or long ago, we’re here to help. We can also offer support to grandparents, siblings and the extended family, as well as professionals who have been impacted by the death of a child.
Get Support after the death of a child
Sands
Sands is here to support you. We understand that baby loss has a huge impact on those affected and can be an extremely isolating and lonely experience. Sands is here to offer a safe space for anyone affected by pregnancy loss or the death of a baby, whether you’re a parent, sibling, grandparent, healthcare professional or friend. You don’t have to navigate this alone; we’re here to support you every step of the way.
Sands | Saving babies' lives. Supporting bereaved families.
The Compassionate Friends
The Compassionate Friends (TCF) is the UK’s only national charity providing peer support to bereaved parents, adult siblings and grandparents who have experienced the death of a child, sibling or grandchild.
The Lullaby Trust
The death of a baby or young child can be a huge shock and have a devastating impact on many people. If you’ve been affected in this way, we offer a range of services that could help you throughout this difficult time. These services are not solely for parents. They’re also for family members and anyone close to a bereaved family.
Bereavement support | The Lullaby Trust
Bereavement support for under 25s
Daisys Dream
Daisy’s Dream provides support for children and young people who have been affected by bereavement, either supporting them in preparing for a loss or working with them following the death of someone important to them.
Our team of practitioners enable children and young people to adapt to their changing situation by offering them the chance to access support and information which addresses their needs and concerns.
Grief Encounter
We are an open-access charity, funded by the generosity of our supporters, and here to help alleviate the pain and confusion caused by the death of a parent or sibling. Bereavement is devastating at any age, but for a child it is life-changing. Get in touch with us if you need support.
Home SUPPORTING BEREAVED CHILDREN & YOUNG PEOPLE - Grief Encounter
Winstons Wish
Winston’s Wish is a charity that helps children, teenagers and young adults (up to the age of 25) find their feet when their worlds are turned upside down by grief. We provide digital bereavement information, advice and support for young people across the UK who are grieving the death of someone important to them. We also help advise the adults who are caring for young grieving people including parents, school staff and healthcare professionals.
Palliative Care Hub
A free out of hours phone service available to patients, relatives, friends and all healthcare professionals. Providing specialist advice and support to those with life limiting illnesses.
The service is available 24 hours a day, 7 days a week.
Dial 111 and select the 'Palliative and End of Life Care' option.
How the Palliative Care Hub can help
This 24 hour service is for anyone that needs specialist palliative care advice or support. It is available to patients, family/friends, carers, GP’s and other heath care professionals (including care and nursing homes when the patient has been identified as palliative).
The Palliative Care Hub will be able to:
- give advice and support where able.
- signpost to appropriate services.
- transfer you to another healthcare professional who can better help you or complete necessary referrals to other services.
Calling this advice line will put you in direct contact with a dedicated Clinical Nurse Specialist, who will aim to support you and ensure you feel safe and confident in the care you are receiving.
You find find more information on the Arthur Rank Hospice Charity website
The Butterfly Community Service
The Butterfly Community Service is a volunteer run service which aims to provide company and companionship for patients in the last year of life, in Cambridgeshire and Peterborough.
By using the service:
- Patients in the last year of life experience improved wellbeing
- Patients in the last year of life have reduced isolation and loneliness
- Patients and their family and friends can talk to volunteers about local support available
If you wish to get in touch or to find out more information about the service, visit their page The Butterfly Community Service