Palliative, End of Life Care & Bereavement

Health and care staff across the Frimley Health and Care Integrated Care System know that showing respect and compassion to patients and service users is essential in getting their treatment right.

Staff across the system are committed to maintaining this high standard for all patients and service users, especially those entering the last weeks and months of their lives.

Caring for a loved one at the end of their life can be distressing and overwhelming for families and carers. We have provided a variety of resources and services below to support the aim of helping people to talk more openly about dying, death and bereavement, and to make plans for the end of their life.

Advance care planning involves thinking and talking about your wishes for how you are cared for between you and those who provide your care, for example a nurse, doctor, care home manager or a family member. It is a non-legally binding document to record your preferences and wishes for your future. Our What is an Advance Care Plan document provides more detail. 

Completing the Advance Care Plan booklet (Adults) is a completely voluntary process and one you can start yourself, delegate to someone you trust, defer completing it for the time being or discontinue any time you wish.

The Collaborative planning for end-of-life decisions booklet provides best practice guidance to enhance the process of advance care planning for a child or young person.

Our Planning care at the end of life - for patients and carers booklet aims to help with any questions or worries you may have. It includes practical advice contact details of organisations and websites for further information and support.

Marie Curie has worked with Rough Guides to put together The Rough Guide to End of Life, a practical guidebook, to help you put in place the right care, support and systems to ensure you have a good end-of-life experience. 

Are you seeking information and further guidance on how to make decisions together about end-of-life care? Or perhaps you have recently lost a loved one and need help with immediate practical, legal and financial issues as well as coping with grief. Whatever the situation, time will be precious to you. The Caring to the End website aims to provide a trusted information guide to end-of-life care for carers of all ages across Surrey, developed by local NHS organisations and Surrey County Council.

We are pleased to be partnering with AtaLoss which provides a comprehensive and regularly updated bereavement support signposting service covering all areas of the UK. 

The Ataloss website is award winning, using filters, you can easily find bereavement support from a wide range of specialist, local and national organisations, to suit your preferences, location and needs, and also access helplines and practical information to help you after someone dies. All pages are translatable into 100 languages.

(Please note, inclusion of a service on the AtaLoss.org website does not imply any endorsement either by us or AtaLoss. We strongly advise you to check that any service you contact is appropriate to your requirements and is registered with a relevant, professional body, where applicable.)

We have also produced a bereavement leaflet for East Berkshire, North East Hampshire and Farnham and Surrey Health residents. 

The leaflet provides contact details and links to organisations providing counselling support and information for people who have lost a loved one, as well as some brief information on what needs to happen when someone dies. 

 

Child Bereavement UK - Helps children and young people (up to age 25), parents, and families, to rebuild their lives when a child grieves or when a child dies.

If you would like to understand more about how to help a grieving child or seek support for your family, visit the Children's understanding of death at different ages page. 

ReSPECT

People are encouraged to think about and record their wishes for the end of their life in an Advance Care Plan. In this plan a person can record preferences such as where they would like to be cared for, who they would like with them and, if need be, who they would like consulted on their behalf, as well as their religious or spiritual beliefs. The Advance Care Plan informs healthcare professionals involved in a person’s care of their wishes and they will make every effort to respect and provide care and treatment accordingly. Your healthcare professional may suggest that the information in your Advance Care Plan be summarised in ReSPECT, a Recommended Summary Plan for Emergency Care and Treatment. You can find more information on this below. 

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 take 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 a sudden deterioration in their health, or of cardiac arrest. Some people will want to record their care and treatment preferences for other reasons.

The plan is created through conversations between you and your health professionals. The plan stays with you and should be available immediately to health professionals called to help you in an emergency, whether you are at home or being cared for elsewhere. Professionals such as ambulance crews, out-of-hours doctors, care home staff and hospital staff will be better able to make quick decisions about how best to help you if they can see your ReSPECT form in an emergency.

The ReSPECT process is designed to support conversations between you and your health professionals (and other people important to you) in order to understand your priorities for your care and develop an agreed plan that records the types of care or treatment:

  • you would want to be considered for in an emergency,
  • you would not want to receive,
  • would not work or be of overall benefit to you.

It is important to note that the ReSPECT form cannot be used to demand treatments that are not likely to benefit you and would not be offered.

In an emergency where you are not able to take decisions or express an opinion, clinical decisions will be made by health professionals trying to act in your best interests and for your benefit.

In an emergency, health or care professionals may have to make rapid decisions about your treatment and you may not be well enough to discuss and make choices. This plan enables you to guide those professionals on what treatments you would or would not want to be considered for, as well as treatments that could be important or those that would not work for you. Many treatments that can be life-sustaining for some people carry a risk of causing harm, discomfort or loss of dignity. Many people choose not to accept that risk if the likelihood of benefit from treatment is small. This plan is to record your preferences and agreed realistic recommendations for emergency situations, whatever stage of life you are at.

Locally we plan to launch the process from July 2021. Implementation will be a gradual process throughout July and August 2021, with different health communities adopting and implementing ReSPECT using different time frames, according to local circumstances. If ReSPECT has already been adopted where you live, then you will be able to work with your health care professional to develop a form.

If ReSPECT has not been established where you live, but you would like to take steps now to ensure your wishes for treatment and care are known about, then you could make an Advance Decision to Refuse Treatment (ADRT). You can find out more information and fill out an ADRT online at www.mydecisions.org.uk.

We have a separate ReSPECT section for staff working in health and social care across our area, including training opportunities. You can find this here.

Short videos: All you need to know in the last year of life

Please find below a series of short videos explaining everything you need to know in the last year of life. 

Click on the images below to view the videos. 

End of life care

End of life care is a sensitive subject for all involved. 

That is why we have put together a short video series below which takes you through the process and where you can hear from those at the heart of health and social care for end of life. 

Simply click on the menus below to access various videos you can watch on the many aspects of end of life care. 

This toolkit has been created together with people with learning disabilities, families, learning disability support staff, and healthcare professionals. It includes resources and approaches to support staff with end of life care planning with people with learning disabilities.

  • Advance care planning 

  • Respect

  • Important information to be aware of

  • Power of attorney