End of Life Care is defined by The National Council for Palliative Care as “care that helps all those with advanced, progressive, incurable illness to live as well as possible until they die. It enables supportive and palliative care needs of both the patient and family to be identified and met throughout the last phase of life and into bereavement. It includes management of pain and other symptoms and provision of psychological, social, spiritual and practical support.”
Around 1% of the population will die each year with possibly 75% of these deaths being predictable. Whilst the largest single cause of death is cancer, this only accounts for approximately a quarter of all deaths.
There is a vast amount of information resources that have been produced to support both patients and carers with end of life care. This section contains links to a number of these resources, including local documents and guidance.
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Advanced care plan
Organisations across Swale and Medway have worked in partnership to develop an Advanced Care Plan (ACP). The care plan is available for you to use to record your information and wishes for palliative care / dying.
This document belongs to the person completing it, and healthcare professionals may help with its completion should that be requested by either patient or family.
The Advanced Care Plan has been designed with input from the following organisations and will be recognised by:
- Medway NHS Foundation Trust
- Medway Community Healthcare (MedOCC, Wisdom Hospice)
- Virgin Health Care
- South East Coast Ambulance Service
- Kent County Council, Medway Council
- Kent Integrated Care Alliance
- NHS Swale CCG
- NHS Medway CCG
The new plan will be used across Swale and Medway and its purpose is to provide on standardised plan for all patients to use within the area. This benefits patients as it will be recognised by a number of healthcare professionals and can stay with the patient.
The plan is not legally binding but will help with discussions around palliative care and the patient’s requests for care, and their dying wishes.
Advance Decision to Refuse Treatment
This form allows the person completing, to specify in advance which treatments they do not wish to receive in the future. It records decisions about healthcare, in the event the person completing has lost mental capacity and cannot consent to, or refuse treatment.
End of Life – A guide for patients
The aim of this information guide is to address some of the concerns you may experience on hearing the news that you are nearing the final stages of life.
It covers issues such as choosing where to be looked after, sorting out unfinished business and getting financial help. It also offers guidance on who can help and what to expect in the last few days of life. Being prepared for what may happen can make the situation a little easier to cope with.
Throughout your journey you will hear mentioned different forms of care.
Palliative care is the supportive care you and your family receive which helps people with an advanced, progressive, incurable illness to live as well as possible until they die.
End of life care is the care you receive in the last few weeks of life. Both include managing pain and other symptoms and providing psychological, social, spiritual and practical support. (National Council for Palliative Care 2006, cited in DOH 2008).
End of Life - A guide for carers and families
We understand that when you receive the news someone you care for is nearing the final stages of life, you will have a range of feelings and concerns, for the person you care for and yourself.
It is important to consider your own needs and wellbeing alongside those of the person you care for. You may have questions around what will happen or what to do when the time comes, or be unsure about support available to you and the person you care for.
Hearing the news that someone you care for is nearing the end of their life can be difficult and distressing. You may feel overwhelmed and experience feelings of shock and disbelief. The person you care for will also be experiencing their own emotions, which you may find be difficult to manage alongside your own feelings.
You may be frightened about what the future holds, feel tearful, depressed or angry that the person you care for is dying and be unsure of how to cope with all the feelings and emotions you have.
Friends and family can be a huge support at this time. You may also find it difficult to talk to those closest to you who will also be dealing with their own emotions. If this is the case help and support is available from a range of sources, including those involved in the care of the person you care for.
Your local carer support service can give you information about help and support. This may include information to read, putting you in touch with services that can provide practical support, emotional support, counselling or just being there to support you.
This booklet contains information and sources of support that may be helpful at this difficult time.
My Wishes register
What is the My Wishes register?
The My Wishes register is a record of your decisions about:
- The type of care you would like to receive as you approach the end of your life, including any cultural or religious wishes
- Your choice of where you would like to die, whether at home, in hospital or a hospice
- Organ donation
It also records key information about your diagnosis, your condition and the medical treatment you are receiving. It is held online and can be accessed securely only by staff responsible for your care, such as your GP, the ambulance service, community nurses, social care and hospice services.
They can access it at any hour of the day or night, so you can be confident that everyone looking after you knows what care you want.
Swale & Medway End of Life Strategy development
A joint strategy is being developed across Swale & Medway, working with all healthcare partners including Healthwatch Kent, Medway Foundation Trust, Medway Community Healthcare (MedOCC, Wisdom Hospice), Virgin Health Care, South East Coast Ambulance Trust, Kent County Council, Medway Council and Kent Integrated Carers Alliance to enhance End of Life services and Support for patients.
Patients and their carers need end of life care that allows them to express their preferences and meets their needs. This care should be integrated and delivered with continuity and consistency. Providing the opportunity of a good death lies at the heart of the strategy, we have identified our local priorities by using the national ambitions for end of life care as a framework for developing this strategy and delivering our local vision.
Our vision is to ensure that everyone approaching their end of life receives consistent and high quality care. We want to make the last stage of life as good as possible with everyone working together to ensure that patients and the people who are important to them (including carers) are supported. We want to support people to die in a place of their choice with the support they, their families and carers need to allow that to happen.
Further advice and support
Dying Matters – to help prepare for death or caring for someone who is dying
Dying Matters is a broad based, inclusive and rapidly growing national coalition which aims to change public knowledge, attitudes and behaviours towards dying and has useful resources on their website.
NHS choices End of Life Care
This guide is for people who are approaching the end of their life. Some parts of it may also be useful for people who are caring for someone who is dying or people who want to plan in advance for their end of life care.
Swale Rapid Response Team
Provides a Nursing and Therapy, Rapid Response Service which includes providing care at a patient’s end of life.
Wisdom Hospice is commissioned to support End of Life patients with their palliative care needs. The team includes specialist clinicians, doctors, therapists, nurses, counsellors, social care workers, welfare advisors, complimentary therapists and volunteers.