End of life care

End of life care - what should you expect?

In 2017 a group of specialists across Europe highlighted that the whole focus of advanced care planning was about making sure people had their wishes reflected. This means making sure everyone is on the same page, and that all healthcare professionals have had open conversations that mean care can reflect that person's:

• Personal values.

• Goals.

• Preferences about care during serious and chronic illness.

In September 2021 the National Institute for Health and Care Excellence (NICE) issued new quality standards about what everyone should be able to expect from end of life care. These standards include:

• If you are approaching the end of life, you should:

  • Have the chance to discuss advance care planning.

  • Have joined-up care, with everyone involved from health and social care services and organisations co-ordinating with each other.

  • Have access to support 24 hours a day, seven days a week.

• If you are a carer for someone approaching the end of their life, you should:

  • Have access to support 24 hours a day, seven days a week.

  • Have access to local support services.

You can find out more about the NICE quality standard, and the specialist report, from the further reading list at the end of this article.

This leaflet deals with advanced care planning in the UK. In particular, it covers three subjects:

• Lasting power of attorney (LPA).

• Advance decisions (previously known as advance directives).

• Advance statements.

What is advance care planning?

'Advance care planning' is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. The goal of advance care planning is to help ensure that people receive medical care that is consistent with their values, goals and preferences during serious and chronic illness.' Advance care planning enables an individual to think about what they would like to happen to them in the event that they lose the capacity to take informed decisions about their care.

How long is end of life care?

This will depend on the individual circumstances and there will be a lot of variety. For example, a person who is told they have motor neurone disease may have a longer time period to prepare for their end of life than someone who has an aggressive type of cancer. For everyone the process begins when they recognise they have a condition which is going to kill them in a relatively short time frame.

When they are ready, they may wish to discuss their thoughts and wishes for what their care involves with a trusted person. These wishes can then be circulated among people delivering their care - the multidisciplinary team. This might include GPs, palliative care consultants, nurses, care home staff (or possibly hospice care staff), and social workers.

They might have specific thoughts about where their care will happen, whether they want to avoid going into hospital for any reason, how clinicians will be managing their pain (if that is a problem for them), and where they will be when they are finally approaching the last days and hours.

When should the discussion happen?

This should be ideally guided by the wishes of the patient. Sometimes they may need a little gentle encouragement to face these difficult decisions. It can be a challenging situation and requires sensitivity. Possible triggers for talking about advance care planning might include:

• The topic being brought up by the person.

• Diagnosis of a life-limiting disease.

• Diagnosis of a condition likely to lead to impairment of capacity or ability to speak - for example, dementia or motor neurone disease.

• Deterioration in condition of existing diseases - eg, recurrence of a cancer, or development of metastases.

• Change in personal circumstances - eg, move to a nursing home, loss of partner.

• At agreed intervals where there is a pre-existing plan.

It is never too soon to talk about end of life care if that is what the person feels they need to discuss.

Patient picks for End of life care

Senior health

What are the options for end of life care?

Death and dying can be difficult subjects to speak about. But if you've received a terminal diagnosis, or are caring for someone who is nearing the end of their life, it's important to understand the options available for care.

by Gillian Harvey

Senior health

Palliative care

Palliative care is defined by the World Health Organization as: "An approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification, assessment and treatment of pain and other problems, physical, psychosocial and spiritual."

by Dr Hayley Willacy, FRCGP

What is an advance decision in end of life care?

An advance decision is a statement which explains what medical treatment you would not want to have in the future if ever you are not able to make decisions for yourself.

The proper name is 'An advance decision to refuse treatment', or ADRT. It is only about what you DO NOT want. If you want to make a statement about what you DO want - that is called an advance statement.

This statement would come into play if it was decided that you lacked capacity as defined by the Mental Capacity Act 2005.

It is popularly known as a 'living will' but unlike a proper will it is not concerned with property or finances, only with healthcare for a dying person.

It can deal with refusing all types of future treatment, not just that which may be immediately life-saving. Types of treatment which you may want to cover in an advance decision if you lose mental capacity include:

• Whether you want fluids or feeding (nutrition) through a drip.

• Whether you want to be revived (resuscitated) if your heart stops beating (cardiopulmonary resuscitation, or CPR).

• Whether you want life-saving treatment if you have brain damage from a stroke, head injury or dementia.

• Any other types of treatment prohibited by your culture or religion (for example, blood transfusion for a Jehovah's Witness).

The legal position

An advance decision is legally binding in England and Wales in the sense that if a doctor gave you treatment against the wishes you expressed, they would face legal action. Except in the case where you decide to refuse life-saving treatment, it does not have to be written down. However, most are written down and a written document is less likely to be challenged.

In Scotland and Northern Ireland the situation is somewhat different. Advance decisions are governed by common law rather than legislation. However, providing the decision was made by an adult with capacity and clearly sets out the person's intentions, it is highly likely that a court would consider it legally binding.

Advance statement

You may sometimes see the term 'advance statement'. This is an expression of a person's desires and may refer to your values, principles and religious beliefs. It is not legally binding but may act as a guide to a doctor who has to make a decision on a patient's behalf at a time when the patient lacks mental capacity or needs support.

What are the limits of an advance decision?

You cannot use an advance decision to:

• Ask for a particular medical treatment.

• Ask for something that is illegal (for example, assisted suicide).

• Choose someone to make decisions for you, unless that person is given lasting power of attorney (LPA).

• Refuse treatment for a mental health condition.

A doctor may not follow an advance decision if:

• You make changes which make the decision invalid (for example, a change to a religion which prohibits the refusal of treatment).

• Better treatment has been discovered since the decision was issued (unless you say in it that you don't want to benefit from such advances).

• The wording is not relevant to your current illness.

A decision may not be valid:

• If it is written but not signed.

• If there is reason to doubt that it is authentic (for example, if it was not witnessed).

• If it is felt that you were under pressure when you made it

• If there is doubt about your state of mind at the time you made it.

Advance decision example

Who should make an advance decision in end of life care?

An advance decision can be made by anyone who is aged over 18 years (16 in Scotland), is of sound mind and cares about the issues involved. Some people may be especially likely to choose the option. For example, those with cancer which cannot be cured, those with a progressive disease of the nervous system and those with early dementia who are still of reasonably sound mind.

What is a lasting power of attorney?

This is a legal document in which you ('the donor') appoint one or more people ('the attorney(s)') to take decisions for you.

In general, decisions about your health and social care can be taken by the professionals looking after you. Your relatives will usually be able to look after your best interests when it comes to general decisions about your daily living.

However, there may be circumstances when you feel it would be best to appoint someone you trust on an official basis to take these decisions for you. This is done by completing and registering a lasting power of attorney (LPA) form. This is a legal document in which you ('the donor') appoint one or more people ('the attorney(s)') to take decisions for you.

An LPA can be drawn up to cover decisions about your health and welfare. If you want to appoint someone to take decisions about your finances and property, this will require a separate LPA. You can have both types of LPA drawn up if you wish.

Typical decisions you may allow a person with a health and welfare LPA to take include:

• Your daily diet.

• What medical treatment you receive.

• Whether you should go into a care home.

You need to be 18 or over in order to make a LPA. You also need to be able to make your own decisions at the time the LPA is drawn up.

Your attorney can be someone out of yourfamily and friends, an acquaintance or a professional (for example, a solicitor). When choosing an attorney think about how well you know them and how much you trust them. How well do they look after their own affairs? Would they be happy to accept the responsibility?

You cannot appoint someone who is under 18 or who is unable to make their own decisions.

You do not need to involve a solicitor in completing the forms although some people prefer to do so. You can fill in the forms on the internet, download and print them out or get them sent to you in the post. You can get further information and download the forms from the GOV.UK website (see below).

Once you have completed the forms you need to register them with the Office of the Public Guardian (see below). A fee is payable (currently £82, reductions available in certain circumstances). You do not need to register the LPA straightaway but you should do so well before it is needed. It can take several months for the LPA to be registered by the Office of the Public Guardian and you cannot use it legally until it is registered. Your appointed attorney(s) can register on your behalf at any time. However, if you feel that the registration is not in your best interests at the time and you have mental capacity, you can object to this.

If someone has not made an LPA while they have capacity and decisions are in dispute, the court of protection will be involved to mediate.

Useful resources

Lasting Power of Attorney, GOV.UK

Office of the Public Guardian Telephone: 0300 456 0300; Textphone: 0115 934 2778; From abroad: +44 300 456 0300
Monday to Friday 9 am-5 pm (except Wednesday, 10 am-5 pm).