End of Life Care
What is End of Life care?
What is Palliative Care?
What is Advance Care Planning?
Key aspects of Advance Care Planning:
Lasting Power of Attorney
Making a Will
What is End of Life care?
End-of-life care refers to health care, not only of patients in the final hours or days of their lives, but also to the care of all those with a terminal illness or condition that has become advanced, progressive and incurable.
It is about support for people who are approaching death. It helps them to live as well as possible until they die and to die with dignity. It also includes support for their family or carers.
The NHS has a useful guide for people approaching the end of their life, or who want to plan in advance: www.nhs.uk/planners/end-of-life-care
Useful publications can also be downloaded free by registering on the Social Care Institute for Excellence website: www.scie.org.uk/publications
What is Palliative Care?
Palliative care is a holistic, multi-disciplinary approach that includes specialised medical care for people with any kind of serious or terminal illness. It focuses on providing patients with relief from the symptoms, pain, and stress caused by the illness. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses and other specialists who work together with a patient’s own doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.
The National Council for Palliative Care (NCPC) is an umbrella charity for all those involved in palliative, end of life and hospice care in England, Wales and Northern Ireland: www.ncpc.org.uk
The Leadership Alliance for the Care of Dying People (LACDP) published in August 2014 a new approach to caring for people in the last few days and hours of life, that focuses on the needs and wishes of the dying person and those closest to them, in both the planning and delivery of care wherever that may be.
The approach is based on five new Priorities for Care that will be the touchstone for every point of care for those in the last days and hours of life and their families – from frontline health and care staff to commissioners and regulators. These are:
1. The possibility that a person may die within the coming days and hours is recognised and communicated clearly, decisions about care are made in accordance with the person’s needs and wishes, and these are reviewed and revised regularly.
2. Sensitive communication takes place between staff and the person who is dying and those important to them.
3. The dying person, and those identified as important to them, are involved in decisions about treatment and care.
4. The people important to the dying person are listened to and their needs are respected.
5. Care is tailored to the individual and delivered with compassion – with an individual care plan in place
More information and useful links can be found on: www.england.nhs.uk (follow links to Our Work and Quality Improvement and Clinical Leadership).
What is Advance Care Planning ?
Advance Care Planning is the preparation an individual can put in place if they have an illness or condition that is expected to get worse, and/or lead to them losing the capacity to make or communicate their decisions. These plans should ideally be written down and communicated to all those involved in the person’s care.
Key aspects of Advance Care Planning:
1. Opening the conversation about end of life
This can be difficult as the subject tends to be avoided in many cultures. It is important to remember that talking about death does not make it happen; everyone will die one day.
The benefits of talking are that it allows families to come closer, share the emotions, make sure their wishes are known and plan for the time they have left. It can also ensure that there are no misunderstandings or unresolved conflicts with loved ones.
• Choose the right time and place.
This might be a question of using an opportunity that presents itself – while out for a walk or a drive. Don’t try to introduce the subject when you are rushed or feeling under pressure.
A good time might also be after a diagnosis of a potentially terminal illness, or if there is to be a medical intervention such as a serious operation or the fitting of a pacemaker.
• What to say? Introduce the subject directly, or invite the other person to talk, while acknowledging that it is not an easy subject and being honest about your own feelings.
• Be a good listener if someone wants to talk about dying. Respect their feelings, be aware of their body language, don’t be afraid of shows of emotion, stay calm and be prepared for silences in the conversation too.
2. Exploring your options if you need end of life care:
• Where would you like that care to take place – at home, in a hospital, a care home or a hospice?
• Who would you like to support you and be with you - friends, family, partner, faith leader?
• How would you like to be treated by doctors and other medical professionals?
3. Identifying your specific wishes for when you die:
• What kind of funeral would you like, and how would you like to be remembered?
• Do you want to donate any of your organs to help others, or for research?
• What arrangements would you like to put in place for the care of any dependents (parents, children), or pets?
The Dying Matters Coalition, led by the National Council for Palliative Care, has further tips and produces a series of helpful leaflets on these and related issues:
4. Advance Decision to refuse treatment
Previously known as a Living will, this is a legal document in which a person decides now what specific treatments they do not want to receive in the future, in the event that they are unable to make or communicate these decisions: for example, cardiac resuscitation, artificial feeding, blood transfusions. If the document is signed and witnessed it is legally valid and doctors must follow these wishes.
Some organisations and health charities have specific information about making an advance decision, with sample forms that can be used to draw one up. (Link to the list of organisations)
For a useful general guide and case study go to: www.adrt.nhs.uk
5. Letting people know your wishes
All these things need to be written down. A good way to do this is to make an Advance Care Plan and give copies to all those who need to know. This is not be a legal document, but it can give you peace of mind that other people who may need to speak for you in the future will make the decisions you would have made.
In Hampshire there is a useful website that gives people the opportunity to put all their important information in one place. It includes an Advance Care Plan form that can be printed off, completed and copies given to everyone involved in their care: www.sayitonce.info
MENTAL CAPACITY ACT 2005:
The Mental Capacity Act came into force in 2007 and provides a framework to empower and protect people who may lack the capacity to make some decisions for themselves.
The Mental Capacity Act makes clear who can take decisions in which situations, and how they should go about this. Anyone who works with or cares for an adult who lacks capacity must comply with the MCA when making decisions or acting for that person.
This applies whether decisions are life changing events or more everyday matters and is relevant to adults of any age, regardless of when they lost capacity.
The underlying philosophy of the MCA is to ensure that those who lack capacity are empowered to make as many decisions for themselves as possible and that any decision made, or action taken, on their behalf is made in their best interests.
The five key principles in the Act are:
1. Every adult has the right to make his or her own decisions and must be assumed to have capacity to make them unless it is proved otherwise.
2. A person must be given all practicable help before anyone treats them as not being able to make their own decisions.
3. Just because an individual makes what might be seen as an unwise decision, they should not be treated as lacking capacity to make that decision.
4. Anything done or any decision made on behalf of a person who lacks capacity must be done in their best interests.
5. Anything done for or on behalf of a person who lacks capacity should be the least restrictive of their basic rights and freedoms.
You can find further information on the Mental Capacity Act on the following websites:
Lasting Power of Attorney
Lasting powers of attorney (LPAs) were created under the Mental Capacity Act and came into effect on 1 October 2007. The LPA replaced the former Enduring Power of Attorney (EPA) which was narrower in scope. Their purpose is to meet the needs of those who can see a time ahead when they will not be able – in the words of the Act, will lack capacity – to look after their own affairs. The LPA allows them to arrange for trusted family members or friends (the attorneys) to be authorised to make decisions on their behalf.
There are two types of LPA: Property and financial affairs (allowing the attorney to deal with money, sell property etc) and Health and welfare (allowing decisions on treatment and care). Each of these has to be made separately and registered with the Office of the Public Guardian, and the person making it must have mental capacity at the time.
LPAs are administered by the Office of the Public Guardian, and detailed information, guidance and forms can be found on their website:
Making a Will
It may sound obvious, but it is surprising how many people die without making a will. This is called being ‘intestate’. Even if a person’s affairs are simple it is important to make one. In English law, if there is no will the law decides who inherits the estate of the deceased person, following a strict order of priority depending on circumstances.
It is possible for someone to make a will themselves, but it is sensible to get advice (for example from Citizens Advice bureau) to ensure it is legally drawn up. If a person’s affairs or circumstances are complicated it is advisable to use a solicitor.
It is also advisable to make an alteration (known as a codicil) or write a new will if circumstances change, for example divorce, remarriage, moving house, etc.
There is a guidance booklet with more detailed information available from: www.gov.uk/makingawill
What other information is available locally and nationally?
National Council for Palliative Care
The National Council for Palliative Care (NCPC) is the umbrella charity for all those involved in palliative, end of life and hospice care in England, Wales and Northern Ireland.
Dying Matters is a broad based and inclusive national coalition of 30,000 members, which aims to change public knowledge, attitudes and behaviours towards dying, death and bereavement.
UK Government – Lasting Power of Attorney
A lasting power of attorney is a legal document that lets you (the ‘donor’) appoint people (known as ‘attorneys’) to make decisions on your behalf. It could be used if you became unable to make your own decisions. There are 2 types of lasting power of attorney:
• health and welfare
• property and financial affairs
Gives information about coping with cancer symptoms, strong emotions, and other difficulties people with cancer may face during their last few months or weeks of life. There is also information to help and support carers, friends and relatives of someone who is dying.
Best known for its network of 2,000 Marie Curie Nurses, who work in the homes of terminally ill patients across the UK, providing practical care and support. The website gives information for people in the final stages of their life. ‘End of Life: a guide’
Palliative and end of life care is an important part of the experience of many people diagnosed with cancer, and their friends, loved ones and relatives. Macmillan develops publications specifically for people with cancer and has a helpline 0808 808 00 00
NHS End of Life Care Guide
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.
Say it Once
This website contains forms which give you the opportunity to record key health and social care information about yourself, and also wishes that are important to you.
This website covers information relating to end of life planning for patients with dementia and includes ‘This is me’ - a form that provides information about the person at the time the document is completed. It can help health and social care professionals build a better understanding of who the person really is.
More than 100,000 people in the UK have MS. MS can be tough to deal with, and the MS Society can help with emotional support, benefits guidance, the right care. They also offer support to healthcare professionals and carers and families.
British Heart Foundation
The British Heart Foundation is the UK’s number one heart charity. Our booklet, Losing someone to heart disease, can offer you help and support with the loss of a loved one to heart disease.
It includes contact details of organisations that will be able to offer you further support, both in coping with your loss and in handling the various procedures that need to be followed when someone dies. To talk to our bereavement support officer please call our Heart Helpline on 0300 330 3311
We're the Parkinson's support and research charity. For more than 40 years we've been working to find a cure and improve life for everyone affected by Parkinson's. The website gives advice on arranging the right end of life care.
Age UK is here to inspire, enable and support older people to help people make the most of later life. Age UK produces a range of information about end of life care
Age Concern produces a range of information about the end of life.
Phyllis Tuckwell Hospice, Farnham
Phyllis Tuckwell Hospice is an adult Hospice caring for terminally ill people and their families across the whole of West Surrey and part of North East Hampshire, both at the Hospice and in the community. Phyllis Tuckwell Hospice also offers advice and support on end of life and advance care planning.
St Michael’s Hospice, North Hampshire
St. Michael's Hospice, based in Basingstoke, cares for patients throughout North Hampshire who are affected by life-limiting illness. This care is provided both within the Hospice and out in the community in patients' homes. All the Hospice services are geared to helping people live life to the fullest and ensure that their quality of life is the best that it can be.
British Lung Foundation
One person in five in the UK is affected by lung disease. Millions more are at risk. The website contains information on end of life and coping with the final stages of lung disease.
Had a stroke? Know someone who has? We’re here every step of the way with a range of Life After Stroke Services and advice that can help people cope with the aftermath of stroke and support them.
This list is by no means exhaustive and there will be other organisations offering information and advice on end of life care specific to their criteria.
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