Resources

What do you need information about? You can find more information about these topics below:

  • Advance Care Planning
  • Advance Directives
  • Assessing your needs
  • Benefits
  • Do not attempt CPR
  • Power of Attorney
  • Services
  • Support towards the end of life
  • Further support

 

Advance Care Planning

Advance Care Planning is making decisions about the healthcare you want or don’t want at the end of your life. This will involve talking to your family, friends, and health or social care professionals you see regularly, for example your doctor or nurse.

You may wish to discuss the following with your healthcare professional and your loved ones:

  • your concerns
  • your personal values / your personal goals for care
  • your understanding of your illness and the expectations you have for how it might progress over time
  • any preferences you have for the type of care or treatment that might be beneficial in the future, and whether these preferences are likely to be available.

Further information about Advance Care Planning is available here:
Anticipatory Care Planning Toolkit
Good Life, Good Death, Good Grief: Planning for the Future

Advance Directives

An Advance Directive is a formal document which enables you to refuse life-prolonging medical treatments or interventions in the event of a situation arising where you cannot refuse them at the time. For example, because you are unconscious following a stroke, heart attack or car crash.

Many people are sure they would not want to be kept alive in a long-term coma-like state. According to a recent YouGov poll, 82% of people have strong views about their end-of-life treatment but very few (only about 4%) have made an Advance Directive.

Many people wrongly believe that family members would be able to make health care decisions on their behalf. In fact, such decisions are made by your medical team, and must be done in your ‘best interests’ (a legal term), unless you have written an Advance Directive (or appointed an Attorney to act on your behalf). The medical decision-making process should include, but is not limited to, what you would want — and recent legal cases have shown that ‘sanctity of life’ can take priority over what the person might have wanted. Having a statement of your wishes removes any ambiguity from your family/friends and the medical profession, over what you have decided you want.

Further information can be found below:

Advance-Directives-Decisions-leaflet

Advance-Directive-Decision-Form

Friends at the End offers help to members in completing Advance Directives. Please get in touch with us if you require help.

Assessing your needs

In the first instance you should discuss your health and care needs with your GP. The first step will be to arrange an assessment of your care needs.

Adult Social Services are required to assess anyone with care and support needs. You may have to contact your Local Authority Adult Social Services Department to arrange for a care assessment. The UK Government GOV.UK website can help you contact your local authority social services department.

Benefits

Living with illness and/or disability may have financial implications. Your local authority should provide advice on any benefit entitlements as part of you care assessment. The Citizens Advice Bureau are a valuable source of independent advice. Citizens Advice Scotland offers advice on social care support here.

Do Not Attempt Cardiopulmonary Resuscitation Order (DNACPR)

A DNACPR is a document issued and signed by your doctor, which tells any medical team not to attempt CPR in the event of cardiac arrest.

When there is some chance that CPR may bring someone back from cardiac arrest to a length and quality of life that they would want, they should be offered:

  • the chance to be given clear and accurate information about their condition and the likely risks and benefits from CPR if they should suffer cardiac arrest
  • the chance to express their beliefs and wishes and to make a shared decision with their health professionals on whether or not they should receive attempted CPR if they should suffer cardiac arrest.

The resulting ‘CPR decision’ would then be recorded either as a decision that attempted CPR would still be appropriate if they should suffer cardiac arrest or as a DNACPR decision.

When a person is dying from an advanced and irreversible condition, where CPR will not work and could cause harm, health professionals have to explain this. Such decisions are made to try to ensure that people receive the care that they need as they are dying, and that they are not subjected to violent physical treatment that will deprive them and those important to them of a dignified death.

However, for many people there is some possibility that CPR could prolong a person’s life, some possibility that it may fail, and some possibility that it may cause harm. The likelihood of each of these possibilities will vary according to each person’s situation at the time. Each person will have their own view of whether they would or would not wish to have attempted CPR in their individual circumstances. More info can be found here:

DNACPR Form Scotland

DNAPCR Factsheet

Decisions about Cardiopulmonary Resuscitation (CPR)

DNACPR Form

Power of Attorney/Welfare Attorney

By granting a Power of Attorney you can give someone you trust the authority to deal with certain aspects of your affairs in case you become unable to manage your affairs yourself. You can choose exactly what powers you want to grant, whether relating to your financial/property matters, or your personal welfare.

If you become incapacitated and haven’t previously granted a Power of Attorney, it may be necessary for someone close to you to apply to court for an Intervention Order or Guardianship Order so they can deal with your affairs on your behalf.

Applying for a Guardianship Order or Intervention Order can be a lengthy process, so it is much better to grant a Power of Attorney in advance if you can.  This also makes life easier for your friends and family at a particularly distressing time. More information can be found at http://www.mypowerofattorney.org.uk

Services

In Scotland anyone aged 65 or over is entitled to free personal care, if assessed as needing it. Free nursing care is available to anyone of any age assessed as needing it.

Arrangements in England and Wales are different, personal care is means tested and currently local authorities won’t provide care services if you have more than £23,250 in savings and property. Advice on funding care in England and Wales is available from NHS Choices here.

Your local authority will try to establish whether you need care and if so (in Scotland) pay for help:

  • to maintain your personal hygiene
  • manage your continence
  • assist with the preparation of food and fulfil any special dietary needs
    to maintain mobility
  • with counselling and support
  • to ensure medication is properly managed, and
  • personal assistance to get into and out of bed, to dress, and to use medical aids and prostheses

In addition, local authorities may arrange but may charge subject to a financial assessment for help with:

  • housework
  • laundry
  • shopping
  • attendance at Day Centres
  • providing pre-prepared meals (support with preparing meals is free)

If you receive free personal care in your home, you are also entitled to attendance allowance to enable someone to take on caring responsibilities. Information on employing a personal assistant is available from the Money Advice Service here. Carers are also entitled to support.

If you need to modify your home in order to continue living independently, then your local authority will be able to provide advice and information on what support is available.

The Scottish Government has produced a booklet providing information on Free Personal and Nursing Care. It is available here.

Support towards the end of your life

You are entitled to a broad range of support, not just medical care, at the end of life.

NHS Choices provides information on what you can expect from end of life care here. But in our experience other support is not always as forthcoming as it should be. It’s important that you know what support you are entitled to, and that, once you are assessed re what care you need, there is a legal obligation on social services to meet your needs.

In addition to statutory care provide by the NHS and Local Authority Social Services there may also be a range of discretionary care provided by other bodies.

Further support

Nursing and personal care may be provided through a wide range of organisations in your area.  

If you live in Scotland, further information on services in your area can be found through ALISS (A Local Information Service System for Scotland) here.

There is a wealth of support available, through a range of charities and organisations.

 

Click the logos below to read more about how these charities and organisations can support and help you, and those around you:

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“To keep someone alive against their wishes is the ultimate indignity.”
– Stephen Hawking

Case Studies

Read more about the support we have provided to help affect change..