To help you with the details of your Advance Care Plan journey we have provided some links under the following headings:
- Thinking about
This section includes external website links to information on resuscitation, making a will, funeral planning, funeral poverty, Lasting Power of Attorney, digital legacy, organ and tissue donation and bereavement support.
- Discussing and deciding
This section includes external website links to general information on discussing and deciding then more specialist websites for the following conditions, Alzheimer’s, cancer, heart disease, lung disease, motor neurone disease and multiple sclerosis.
- Documenting and sharing
This section includes external website links about documenting your Advance Statement, Advance Decision to Refuse Treatment and Lasting Power of Attorney. It also has external website links on how to share your documents. such as Lions ‘message in a bottle’ and ‘My Decisions’.
If you specifically want to write a legally binding document such as an ‘Advance Decision to Refuse Treatment’ then we would advise looking in this section at advance decision assistance, Alzheimer’s Society, Gold Standard Framework, the MND and My Decisions for templates.
- Reviewing
There are no website links for this section however you are encouraged to think about reviewing your Advance Care Plan regularly – as a guide annually – in case you have changed your mind during the year or something has affected the way you may feel about certain things in your plan.
It’s not always easy to read or talk about advance care planning or dying. Take your time. You don’t have to do it all at once. You may want to pause or skip some of the information and resources, or wait and discuss with your family and friends.
THINKING
- Thinking about Resuscitation
Resuscitation Council UK [Useful for thinking, discussing, deciding, documenting and sharing]
The Resuscitation Council (UK) promotes high-quality, scientific, resuscitation guidelines that are applicable to everybody, and to contribute to saving life through education, training, research and collaboration. There is a lot to read on this website – but this link takes you through to information about Do Not Attempt Cardio Pulmonary Resuscitation (DNACPR).
There are also some useful Frequently Asked Questions e.g. what’s the difference between an Advance Decision to Refuse Treatment and Do Not Attempt Cardio Pulmonary Resuscitation (DNACPR) available here
TalkCPR – Discuss DNACPR [Useful for thinking, discussing, deciding, documenting and sharing]
A very comprehensive and useful website about conversation about CardioPulmonary Resuscitation. Includes videos, Frequently Asked Questions and information. Take your time to have a look around the website.
The link to the main website is here
- Thinking about Making a Will
Age UK -Explains why you need a will and what to include and much more with downloadable guides available from here
GOV UK -Website has an overview, writing, storing and updating your will information as well as ensuring it is legal. The link to the main website is here
Marie Curie -This website presents making your will in a simple six-step approach here
- Thinking about Funeral Planning
Age UK – The website gives a summary overview of practical things to consider when planning your funeral. The website page can be found here
Association of Green Funeral Directors -To help members of the public find funeral homes in their area which are willing to provide greener options in the funerals they carry out. The link to the main website is here
Dying Matters – My Funeral Wishes: a simple form created by Dying Matters and the National Association of Funeral Directors, which lets you create a personal funeral plan reflecting you as an individual.
GOV UK – Information from the Government about what to do after a death about arranging a funeral
The Government recommends choosing a funeral director who’s a member of one of the following:
National Association of Funeral Directors
National Federation of Funeral Directors
The National Society Of Allied And Independent Funeral Directors
Marie Curie – The website gives a list of practical things to consider when planning your funeral including costs.
Natural Death Centre – Established 25 years ago in 1991, The Natural Death Centre is a social, entrepreneurial, educational charity that gives free, impartial advice on all aspects of dying, bereavement and consumer rights. The link to the main website is here
- Information about Funeral Poverty
Macmillan Cancer Care – An article on funeral poverty and where to get help can be found here
Fair Funerals Campaign – This is a campaign organisation run by the Funeral Poverty Alliance, a network of not-for-profit organisations to campaign collectively against funeral poverty. The link to their website is here
- Thinking about Lasting Power of Attorney
GOV.UK – This is UK government website with the full information about how to make a health and care and financial affairs Lasting Power of Attorney. There is a lot of information to take in, so it is worth taking your time to read. Ask advice from your solicitor, legal advisor, social worker or health and social care practitioner if you need help. An overview can be found here
Office of the Public Guardian – This is information about the Office of the Public Guardian part of the UK Ministry of Justice. If you make a Lasting Power of Attorney, you must register it through this body. The link to the main website is here
- Thinking about your Digital Legacy
Digital Legacy Association [Useful for thinking, discussing, deciding, documenting and sharing]
A website with useful information how to preserve your digital legacy, pass down your digital assets and learn about your rights in relation to UK law. Information for the public can be found here
DeadSocial [Useful for thinking, discussing, deciding, documenting and sharing]
The way in which we plan for death grieve and remember has changed forever. DeadSocial provides free tools, tutorials, and events to help the general public understand and address death in today’s ever changing World. Find out more here
Marie Curie [Useful for thinking, discussing, deciding, documenting and sharing]
Helpful information on what to think about your online accounts and digital or social media accounts can be found here
- Thinking about Organ Tissue Donation
NHS Blood and Transplant [Useful for thinking, discussing, deciding, documenting and sharing]
This is the national NHS website with information about how to donate blood, organs, tissue and stem cells. The link to describe what they do is here
There is a lot to read but this link takes you to more information if you are interested in being an organ or tissue donor. The link to the main website is here
Macmillan Information about Organ and Tissue Donation [Useful for thinking, discussing, deciding, documenting and sharing]
A helpful link from Macmillan about organ and tissue donation
Marie Curie – A helpful overview with links to external sites if you wish to pursue organ donation further.
Motor Neurone Disease Association [Useful for thinking, discussing, deciding, documenting and sharing]
A helpful link from the Motor Neurone Disease Association about organ and tissue donation
- Thinking about Bereavement Support
Age UK – A helpful link on coping with bereavement
Bereavement Network – Information to support those who have experienced bereavement following adoption or separation. The link to the main website is here
British Heart Foundation – Helpful information on losing someone to heart disease can be found here
Child Bereavement Network – A website for families and educates professionals when a baby or child of any age dies or is dying, or when a child is facing bereavement. The link to the main website is here
Childhood Bereavement Network – The website for those working with bereaved children, young people and their families across the UK with practical information and stories. The link to the main website is here
CRUSE Bereavement Care – Access to practical information and sources of help include a link to Cruse in Wales and a range of fact sheets
Dying Matters – A helpful website explaining the grieving process and how to find help can be found here
GOV UK – Explains eligibility for bereavement payments and how to submit a claim can be found here
Healthtalk.org – Provides free, reliable information about health issues, by sharing people’s real-life experiences. Includes the experiences of living with dying and bereavement. Interviews with a wide range of people with personal experience of living with dying, so that you can share in their stories can be found here
MIND – The website covers the effects of bereavement and useful websites and contact numbers for help. The link to the main website is here
NHS Choices – Practical information on effects of bereavement, coping and sources of help can be found here
Together for Short Lives – A website for children and young people who are expected to have short lives with a wealth of information including bereavement support.
Winston’s Wish – Supports children, young people and their families after the death of a parent or sibling. Includes a helpline and online resources. The link to the main website is here
DISCUSSING AND DECIDING
- Discussing and deciding general information
Advance Decisions Assistance – A helpful website with comprehensive information about Advance Decision to Refuse Treatment. Examples are available to start your own with access to a template. The link to the main website is here
Age UK – Information on having difficult conversations is available here
FINK cards – You can purchase cards with questions to help discussions here
Marie Curie – A very comprehensive website about end of life care for patients and carers including bereavement care. It is worth taking your time to look around it and discuss with your family and friends. The link to advance care planning is here
- Discussing and deciding information on Alzheimer’s
Alzheimer’s Society Making Decisions and Difficult Conversations
This website has a factsheet offering guidance to carers on the Mental Capacity Act 2005. It also gives advice on how to approach decisions in a range of difficult areas. The link can be found here
- Discussing and deciding information on cancer
Cancer Research UK – There are some helpful suggestions for how to talk about dying here
- Discussing and deciding information on heart disease
British Heart Foundation – Talking about heart failure and end of life care
This is a useful booklet based entirely on conversations with over sixty people affected by heart failure to help talking about heart failure about end of life care.
Talking about death and dying provides pointers on how to talk about death and dying and breaking bad news.
- Discussing and deciding information on lung disease
British Lung Foundation – A helpful website suggesting questions to help you discuss advance care planning with your family, carers and healthcare professionals specific to your condition.
- Discussing and deciding information on motor neurone disease
Motor Neurone Disease Association – There is a helpful section about how to have conversations with your health care professionals as well as with your family and children
- Discussing and deciding information on Multiple Sclerosis
MS Society: End of Life Care [Useful for thinking, discussing and deciding]
Provides a useful information booklet about end of life care which includes advance care planning
DOCUMENTING AND SHARING
- Documenting and Sharing Advance Statements
Age UK – Explains what an Advance Statement is and the different terms used in advance care planning here
Compassion in Dying – This factsheet explains what an Advance Statement is and how it differs from an Advance Decision (to refuse treatment). It is applicable to people living in England and Wales.
Dying Matters – Includes example of an Advance Statement (called Preferred Priorities for Care here).
Gold Standards Framework – This is an example of a ‘Thinking Ahead Document’ (a type of Advance Statement) provided here
NHS Choices – Provides a helpful summary overview with links to external websites available here
Macmillan Cancer Care – This links to a comprehensive website and a form to document your ‘preferred priorities of care’, also known as an Advance Statement
This is a very detailed website (aligned with Compassion in Dying) where you can fill online an Advance Statement or Advance Decision to Refuse Treatment. The forms provide extensive examples of when you might want to complete any of these forms. You might find it helpful to discuss these examples with e.g. your doctor, nurse or social worker in order to explore all the terms and implications of your decisions.
- Documenting and sharing Advance Decision to Refuse Treatment (ADRT)
Advance Decisions Assistance [Useful for discussion and documentation]
A helpful website with comprehensive information about Advance Decision to Refuse Treatment. Examples are available to start your own with access to a template.
Age UK – Explains what an Advance Decision to Refuse Treatment is and the different terms used in advance care planning.
Alzheimer’s Society – This provides a direct link here to a sample Advance Decision (to Refuse Treatment) form.
Compassion in Dying – Advance Decision to Refuse Treatment information and template are available here
Dying Matters – Advance Decision to Refuse Treatment Guide with a document template on page 31.
Healthtalk Org – There is a helpful video from Healthtalk Org where people talk about Advance Decision to Refuse Treatment.
Macmillan Cancer Care – This links to a comprehensive website and links to a form to document your ‘Advance Decision to Refuse Treatment’ (ADRT). ADRTs require discussion with a healthcare professional and your signature must be witnessed.
Marie Curie – A website with an overview of advance care planning with an explanation about refusing treatment.
MIND – A website with extensive information on the Mental Capacity Act and requirements around setting up an Advance Decision to Refuse Treatment
Motor Neurone Disease Association – This is a direct link to an Advance Decision to a Refuse Treatment template
My Decisions – This is a very detailed website (aligned with Compassion in Dying) where you can fill online an Advance Statement or Advance Decision to Refuse Treatment. The forms provide extensive examples of when you might want to complete any of these forms. You might find it helpful to discuss these examples with e.g. your doctor, nurse or social worker in order to explore all the terms and implications of your decisions.
NHS Choices – Provides a helpful summary overview with links to external websites about advance decision to refuse treatment.
- Documenting & Sharing Lasting Power of Attorney for health and care decisions
Age UK – A helpful explanation of a lasting power of attorney and what it means and what you need to do can be found here
Alzheimer’s Society – A helpful explanation of a lasting power of attorney and what it means and what you need to do can be found here
Citizen Advice Bureau – Explains lasting power of attorney and the need to complete it whilst you have capacity. The link can be found here
Compassion in Dying – A detailed website with a various resources on advance care planning including a fact sheet on lasting powers of attorney which can be found here
GOV.UK -This is UK government website with the full information about how to make a Health and Care (used to be Health and welfare) or Financial Affairs Lasting Power of Attorney. There is a lot of information to take in, so it is worth taking your time to read. Ask advice from your solicitor, legal advisor, social worker or health and social care practitioner if you need help. A link to an overview is here
MIND – Extensive information on the Mental Capacity Act and how it affects you when you plan ahead such as a lasting power of attorney can be found here
Marie Curie – A general overview of lasting powers of attorney can be found here.
NHS Choices – Provides a helpful summary overview with links to external websites can be found here
Office of the Public Guardian [Essential for deciding, documenting and sharing]
This is information about the Office of the Public Guardian part of the UK Ministry of Justice. If you make a Lasting Power of Attorney, you must register it through this body.
- Documenting and Sharing Information – Lions Message in a Bottle
Lions Message in a bottle [Useful for documenting and sharing]
The Lions Message in a Bottle scheme is a simple idea designed to encourage people to keep their personal and medical details on a standard form and in a common location like the fridge. It is available in a variety of areas across Wales. This link takes you to a ‘Find a Lions Club near me’
Documenting and Sharing Information – My Decisions
My Decisions – This is a very detailed website (aligned with Compassion in Dying) where you can fill online an Advance Statement or Advance Decision to Refuse Treatment. The forms provide extensive examples of when you might want to complete any of these forms. You might find it helpful to discuss these examples with e.g. your doctor, nurse or social worker in order to explore all the terms and implications of your decisions.
