Planning Ahead, End of Life Decisions

We of course do our best for all patients at the end of their lives whether they have expressed wishes or not.

It is a prospect some patients prefer not to think about. Others like to plan ahead and decide what they would like to happen if dementia or a life-threatening accident or illness makes it impossible for them to manage their own affairs.

Your GP will be glad to discuss the matter with you and inform the relevant agencies to take account of your wishes when the time comes. But before you make any decisions it is important to discuss things with those nearest and dearest to you so they are aware and understand.

Useful links

Dying Matters is an organisation which aims to help people talk more openly about dying, death and bereavement, and to make plans for the end of life. Their website has leaflets and advice on having discussions and planning ahead.

Planning your future care is a booklet outlining the choices you might want to consider.

Healthtalk is a website detailing people’s experiences of illness, including dying and bereavement.

Household Quotes offers advice on benefits and grants Available for OAPs.

1. Advance Decisions, Advance Statements and Living Wills

A living will is a statement expressing your views on how you would or would not like to be treated if you are unable to make decisions about your treatment yourself in the future.

The term ‘living will’ doesn’t have a legal meaning but usually refers to either an advance decision or an advance statement.

Advance Statement

An advance statement can explain your likes and dislikes and include anything that is important for you to be comfortable. It allows you to say how you would like to be looked after and cared for and will be used if you ever lose the ability to make or communicate your own decisions.

Advance statements must be considered by the people providing your treatment when they determine what is in your best interests, but they are not legally bound to follow your wishes.

Advance Decision to Refuse Treatment

An advance decision to refuse treatment (ADRT) allows you to specify what medical treatments you would not want to receive. It is legally binding, as long as it fulfils certain requirements. This means that doctors and other medical professionals must follow it.

An ADRT must indicate exactly what type of treatment you wish to refuse and should give as much detail as necessary about the circumstances under which this refusal would apply.

It will only be used if you lose the capacity to make or communicate decisions about your treatment, e.g. if your have advanced dementia or are unconscious.

Useful links

The Age UK Website has useful guidance and factsheets on living wills, advance decisions and advance statements.

The Alzheimer’s Society Website also has guidance and a form that helps you draft an advance decision

Healthtalk gives a clear synopsis of advance decisions and advance statements

Example ADRT is an example of an ADRT that can be edited to express your views.

2. Resuscitation Decisions

Cardiopulmonary resuscitation (CPR) is tried on everybody whose heart and breathing stop, if there is a chance it will work, and if the person has not refused CPR.

However, if people are already very seriously ill and near the end of their life, there may be no benefit in trying to revive them. This is particularly true when people have other things wrong with them.

When CPR is attempted in hospital it is successful in 10 – 15% of cases, of these a smaller proportion will survive long enough to be discharged from hospital. In non-acute areas such as community hospitals and public places current survival is less than 5%. All of the above figures are dependent on the patients’ underlying medical conditions, and illnesses such as cancer and heart disease will reduce the chance of survival further.

Some people want to consider whether or not they would want CPR. This leaflet gives information to help you decide.

If you think you might not want CPR please discuss this with your GP, who will talk it through with you and explain the system to alert emergency health staff of your decision.

We wish to reassure you that if it is decided that CPR won’t be attempted this will not affect any other aspect of you care. Your healthcare team will continue to give you the best possible care.

3. Lasting Power of Attorney

A lasting power of attorney (LPA) is a legal document that lets you appoint one or more people to help you make decisions or make decisions on your behalf.

There are two types of LPA:

  • health and welfare
  • property and financial affairs

You can choose to make one type or both.

This gives you more control over what happens to you if, for example, you have an accident or an illness and can’t make decisions at the time they need to be made.

You must be 18 or over and have mental capacity when you make your LPA.

Useful links

The Office of the Public Guardian is there to protect people who lack capacity. Forms and guidance on appointing an LPA are available on this website. However, many people prefer to make arrangements via a solicitor, because making and registering an LPA can be a complex process.

The Age UK Website gives useful information on LPAs.

The Alzheimer’s Society Website has an audio factsheet on LPAs.

Mental Capacity Act is a booklet explaining about making decisions about your health, welfare or finances. Who decides when you can’t?

A newspaper article explains about LPAs.

4. Organ donation

Transplants are one of the most miraculous achievements of modern medicine, but they depend on the generosity of donors and their families who are willing to make this life-saving or life-enhancing gift to others. One donor can save the life of several people, restore the sight of two others and improve the quality of life of many more.

Some believe that there is an age limit on becoming an organ donor, but this is a myth. Organs are successfully transplanted from people in their 70s and 80s, and the oldest cornea donor recorded was 104 years old. There are very few illnesses that prevent someone from donating their organs after death.

Useful links

The NHS Organ Donation Register explains about how to register your wish to become a donor.

The NHS Choices Website has an article on organ donation.

A newspaper article explains the human stories behind a recent transplant.

5. Donating your body to medical science

Some people choose to donate their bodies, or body parts, to medical schools.
Human bodies are used to teach students about the structure of the body and how it works; they may also be used to train surgeons and other healthcare professionals. People decide in advance to donate their body after their death. These donations are highly valued by staff and students at anatomy establishments.

Useful links

The Human Tissue Authority Website gives guidance on donation of your body or body parts for anatomical examination, research, and education and training.

A newspaper article explains why one person decided to donate her body, and how she inspired another to do the same.

6. What to expect when someone is dying

It can be difficult to know what to expect in the last stages of life. The leaflet below explains what might happen in the last days and hours of life and gives examples of what you can do to support the dying person. It also explains what needs to be done after someone dies.  View our leaflet.

7. Bereavement

Bereavement is the time we spend adjusting to loss. It is a distressing but common experience. There is no standard time limit and there is no right or wrong way to feel during the bereavement period – everyone must learn to cope in their own way.

Grief, although normal, can manifest in a huge range of unexpected ways. Some people get angry, some people withdraw further into themselves and some people become completely numb. It is not just one feeling, but a whole succession of feelings, which take a while to get through and which cannot be hurried.

If you are having trouble with bereavement we are very happy to see you for advice and support.  You may also find the links below helpful.

Useful links

The Royal College of Psychiatrists Website has a helpful leaflet explaining bereavement.

The Age UK Website also has a helpful guide.

The NHS Choices Website includes a search engine with a postcode checker to find bereavement services near you.

Cruse Bereavement Care is a national charity for the bereaved, providing face-to-face and group support, delivered by trained bereavement support volunteers across the UK.

Oxfordshire Cruse is the local branch of the national charity.