The media have on numerous occasions focused a spotlight on end of life decisions, often highlighting the legal and professional obligations of doctors. The End of Life Care Strategy sets out to identify what constitutes a good death.

Important factors are;

  • Being treated as an individual with dignity and respect
  • Being without pain and other symptoms
  • Being in familiar surroundings
  • Being in the company of family and/or good friends.

Key points in the strategy;

  • Identification of people approaching the end of life and initiating discussions about preferences for end of life care
  • Care planning – assessing needs and preferences, agreeing a care plan to reflect these and reviewing these regularly
  • Coordination of care
  • Delivery of high quality services in all locations
  • Care after death
  • Support for carers, both during a person’s life and after their death.

Most people would wish to have some input into how they are cared for in the final stages of their life

  • Some people may wish to make an Advance Decision (may also be called an Advance Care Directive or an Advance Care Statement) to refuse treatment should they lack capacity to do so in the future.
  • Some people may wish to set more general wishes and preferences about how they are cared for and where they would wish to die. These should be incorporated into an Advance Care Plan (may also be called a Statement of Wishes and Preferences).

In order to make an Advance Care Decision or an Advance Care Plan the patient must have mental capacity.

The Advance Care Decision or Plan must only be implemented if the patient loses the capacity to consent or dissent to treatment.

Mental Capacity Act (MCA) and Mental Capacity Code of Practice

Some understanding of the Mental Capacity Act is essential to the consideration of Advance Decisions and Advance Care Planning since most decisions in this context are underpinned by the Mental Capacity Act Code of Practice.

Chapter 9 Of the MCA Code of Practice relates specifically to Advance Decisions to Refuse Treatment and may be accessed at here.

Healthcare professionals are legally obliged to be familiar with and have regard to this code of practice and will be subject to civil or criminal proceedings if they fail to comply.

The act applies only to persons over the age of 16 and a person under the age of 18 may not donate a lasting power of attorney or make a legally valid advance decision, even though they are competent to give legally valid consent, and sometimes dissent, to treatment. However, a person under the age of 18 that has the mental capacity to do so may make their wishes and views about treatment known, orally or in writing. This must then be considered in any ‘best interests’ decision if the young person subsequently lacks the capacity to consent or dissent to treatment.

There is always a legal presumption of capacity but if this is in doubt then there is a two stage test of capacity;

  • is there impaired / disturbed functioning of mind or brain?
  • is it sufficient that the person lacks capacity to make the particular decision?

To give consent a person must be able:

  • to understand relevant information
  • to retain that information
  • to use/weigh it in decision-making process
  • to communicate decision (speech, sign language or any other means)

A Health Care professional who must decide whether a patient is able to provide legally valid consent must use all means possible to try to facilitate the consent process.

Mental capacity may vary from day to day or hour to hour and applies to a specific decision. A patient may retain capacity to make some decisions but not others. For example many elderly patients lose the capacity to make complex and informed decisions relating to their financial affairs, but are still perfectly capable of providing consent for medical treatment or personal care.

All acts or decisions made for or on behalf of a person lacking capacity must be made in their ‘best interests’. This involves working through a statutory checklist which involves;

  • equal consideration of all regardless of age, appearance, condition or any aspect of their behaviour & non-discrimination on the basis of age, sex, sexual orientation etc
  • a consideration of all relevant circumstances
  • a judgement as to whether the decision can be put off until capacity is regained?
  • permitting & encouraging the active participation of person
  • giving special considerations for life-sustaining treatment
  • having regard to the person’s wishes & feelings, beliefs & values
  • taking heed of the views of other relevant people such as close friends and family and involved carers

The professional considering the patient’s best interest must take into account;

  • the patient’s current wishes, feelings, beliefs & values
  • any relevant past statements or views, expressed in writing or verbally, in habits or behaviour, indicating the patient’s beliefs & values
  • any factors the patient would have been likely to consider if they were able to do so
  • any conflict between past wishes & feelings – and whether this would be likely to influence the decision if the patient still had capacity?

Advance decisions;

  • refusing specified treatment – if legally valid this must be respected
  • requesting particular medical treatment – these should be considered but the doctor is not required to give unnecessary or inappropriate treatment if it is not deemed to be in patient’s best interests

The MCA established a new statutory provision for the established legal right of any competent, informed adult to refuse specified medical procedures or treatment in advance. The person’s decision will only take effect if they lose capacity.

An Advance Decision;

  • should be discussed first with a health professional
  • is as valid & applicable to particular circumstances as a valid and contemporaneous decision
  • may not request that the patient be given an unlawful procedure
  • does not change the law relating to murder, manslaughter or assisted suicide

An Advance Decision to refuse treatment;

  • must specify the treatment to be refused in clear medical or lay terms
  • may set out circumstances in which it will apply – with as much detail as possible
  • will only apply if person lacks capacity to consent to that specified treatment

A general desire ‘not to be treated’ would not constitute an Advance Decision

Written Advance Decision

It is helpful if written Advance Decision includes;

  • date of birth, address, & any distinguishing features of author in case patient is unconscious with no means of identification
  • name & address of GP & whether they have a copy of the Advance Decision
  • a statement that it should take effect if the author lacks capacity
  • the specific treatment to be refused & in what circumstances
  • date of writing or review
  • author’s signature or mark (or the signature of a person signing on his/her behalf & in his/her presence)
  • signature of witness to author’s signature (or direction that it be signed on his/her behalf)
  • relationship between witness & author of advance statement Verbal Advance Decision This may exist if:
  • a person with capacity was known to have refused consent in advance to a specific treatment, but not had formally recorded the fact
  • a person being treated told a healthcare professional he or she would not be willing to consent to a specific treatment

This should be recorded in the healthcare record setting out:

  • that it should have effect if the person lacks capacity in future
  • specific treatment to be refused & in what circumstances • details of someone present when the decision was made

Advance Decisions:

  • should be reviewed & updated regularly
  • are more likely to be valid & applicable if they take account of changed circumstances
  • may be altered or withdrawn any time, orally or in writing
  • any changes should be notified to relevant individuals & should be documented in the healthcare records
  • which include refusal of life-sustaining treatment may only be changed if all formalities are observed

Not respecting a valid & applicable Advance Decision may expose the health professional to civil liability and / or criminal prosecution.

A valid and applicable Advance Decision;

  • must be complied with – a ‘best interests’ decision is not applicable
  • takes precedence over:
    • consent of attorney with Lasting Power of Attorney (LPA) appointed before the Advance Decision
    • consent by court-appointed deputy o provisions of section 5 which would allow ‘best interests’ treatment
  • does not take precedence over
    • consent of an attorney with LPA appointed after the advance decision was made
    • cannot be over-ridden by the Court of Protection

Advance Decisions refusing treatment of mental disorder:

  • if valid & applicable to specific voluntary treatment of a mental disorder these should be respected
  • compulsory treatment may still be given under Part 4 of Mental Health Act 1983
  • apply only to the treatment of the mental disorder and not to other medical condition

Emergency treatment:

  • may be given in patient’s best interests if no valid & applicable Advance Decision
  • should not be delayed to look for an advance statement if there is no clear indication that one exists

Treatment contrary to advance statement:This could result in charge of battery or assault unless the health professional was able to demonstrate a reasonable belief that no valid and applicable advance Decision existed.

Conscientious objectors:

  • the current position is unchanged
  • the health professional should make his or her views clear at the outset and offer transfer of care if this would not jeopardise patient’s care
  • should not be pressurised into complying
  • must not abandon patients or allow care to suffer
  • the Court of Protection has the power to direct that a different healthcare professional takes over responsibility if transfer cannot be agreed

Lasting Power of Attorney (LPA)

  • replaces previous Enduring Power of Attorney (EPA)
  • covers personal welfare & healthcare as well as financial & property decisions
  • property & financial LPAs’ – may be used before & after loss of capacity, according to person’s wishes
  • personal welfare / healthcare LPAs – must be used only if the person lacks the capacity to make a particular decision.
  • must be correctly executed in the prescribed form
  • must be registered with Public Guardian
  • may authorise action in all or specified matters

One or more attorneys (LPAs) may be appointed:

  • joint attorneys must always act together and agreement must be obtained before any decision is made or any act carried out
  • joint and several attorneys can act together or independently if they wish

If you believe any LPA is acting inappropriately:

  • any concerns or suspicions of abuse should be raised immediately with Office of Public Guardian (OPG), who may refer the matter to the Court of Protection
  • any suspicion of physical abuse, theft or serious fraud should be notified to the police
  • the Mental Capacity Act introduced a new criminal offence ‘to wilfully neglect or ill-treat person who lacks capacity’. The penalty is a prison sentence of 5 years, a fine or both.

Life-sustaining treatment and Advance Decisions

  • life-sustaining treatment is that which a person providing health care regards as necessary to sustain life at that particular time & in those particular circumstances
  • artificial nutrition & hydration (ANH) is recognised as a form of medical treatment – refusing it because of an Advance Decision is likely to result in death

An Advance Decision may relate to life-sustaining treatment but in this situation must be;

  • in writing
  • signed by author or someone directed to do so by author in his/her presence
  • signed in presence of a witness
  • verified by a specific statement, also signed in presence of witness, expressly and explicitly stating that it is to apply to the specified treatment “even if life is at risk”

Advance Decisions may not refuse basic care e.g. warmth, shelter, hygiene & the offer of oral food & water which may always be provided in the best interests of person lacking capacity.

The overall clinical responsibility for decisions about Cardio Pulmonary Resuscitation (CPR) rests with the most senior clinician in charge of the patient’s care, which may be the GP.

If a patient with capacity refuses CPR, or if a legally valid Advance Decision exists refusing CPR in the patient’s particular circumstances, then this must be respected but otherwise the decision must be based on an individual assessment and a ‘best interests’ judgment.

If the cardio pulmonary collapse is likely to be reversible and the conditions of an Advance Decision do not apply then CPR would normally be indicated on a ‘best interests’ basis.

If no Advance Decision exists there should normally be an initial presumption in favour of CPR unless it is believed that it would be unlikely to restart the heart or that the expected benefit would be outweighed by the subsequent burdens that it could create for the patient.

Advance Care Planning

This is part of good clinical practice in those patients who are at risk of cardiopulmonary collapse otherwise it is not essential. It may be instigated by the carer(s) or the patient.

The communication and the provision of information are important aspects of good quality care in these circumstances. The process of Advance Care Planning must be handled sensitively and only if the professional involved believes it would be of benefit to the patient. Staff dealing with advance care planning must be familiar with the legal and ethical considerations and should be able to deal with the patient’s concerns and answer any questions. If they are unable to do so they must seek further advice.

Staff dealing with Advance Care Plans must be able to provide realistic advice on the support and services which may be available in particular circumstances.

The member of staff dealing with the Advance Care Planning should be aware of the potential benefits, harms and risks associated with treatment in order to help the patient make an informed decision.

Advance Care Planning (ACP) is a voluntary process of ongoing patient centred discussion between an individual and their care providers which will be implemented when an anticipated deterioration of function occurs in which the person loses the power to communicate or to consent or dissent to treatment. The content of the discussion should be determined by the individual. If the patient does not wish to confront specific issues this should be respected.

If the patient consents it is helpful if this planning process is recorded in writing for future reference. The patient should be allowed to check the documentation for accuracy. The Advance Care Plan should then be regularly reviewed and communicated to key people caring for the patient. Friends and family may be included in the planning process if that is the patient’s wish.

The discussion should cover the person’s concerns and their personal values and aspirations as well as the patient’s understanding of their illness and prognosis and their preference for particular care or treatment which may be valuable now or in the future.

Confidentiality must, of course, be respected, but if the patient agrees then the information may be shared with other health and social care professionals and with appropriate services, such as out of hours care providers and ambulance services. If the patient has lost capacity then sharing this data will be based upon a ‘best interests’ judgment.

Any subsequent changes made to an Advance Care Plan should be recorded, provided the patient consents.

The Advance Care Plans should be stored in such a way that they will be readily available should they be required.

An Advance Care Plan is not legally binding, but does have ‘legal standing’ and must be taken into account when determining a ‘best interests’ decision if a patient lacks mental capacity.

If the person wishes to refuse specific treatment then it may be appropriate that a legally binding Advance Decision is also made and preferably recorded in writing to cover the treatment to be refused and the circumstances in which this should apply. This must be an entirely voluntary and fully informed decision made by a competent patient. Alternatively the patient may choose to donate a Lasting Power of Attorney so that a decision may be taken on their behalf in the event of a subsequent loss of capacity.

Possible Triggers for Advance Care Planning

  • life changing event eg the death of a partner
  • following a new diagnosis eg motor neurone disease of cancer.
  • following a significant change in treatment eg for chronic renal failure
  • after multiple hospital admissions
  • a current needs assessment

Advance Care Planning should not be initiated as a routine or in response to outside pressures e.g. from family or carers.

However, it may be initiated as a response to specific ‘cues’ from the patient.

The care provider that discusses an Advance Care Plan should have full knowledge of the patient’s medical condition, prognosis, personal circumstances and the likely treatment options available and should be able to communicate effectively on these matters. A senior nurse for example may well be able to hold sensitive and private discussions on these matters in order to ascertain the patient’s wishes.

A written statement of wishes or a documented conversation should ideally be recorded in the patient’s medical notes, but the patient’s consent to do so must be obtained.

A statement of wishes may cover simple things such as wanting to sleep with the light on or much more difficult issues such as any treatment that the patient would not wish to receive. Such wishes expressed in an Advance Care Plan are not legally binding and may not be used for the purposes of seeking a carer to perform an illegal act, such as assisted suicide, but the patient’s wishes must be taken into account in any ‘best interests’ judgement if the patient loses capacity to consent or dissent to treatment.

If the patient wishes to draw up an Advance Care Decision which is legally binding they should be assisted to do so by someone who understands the legal requirements.

Role of GP in drawing up Advance Decisions & Advance Care Plans

The GP may wish to be actively involved in discussing these issues and helping the patient to drawing up an Advance Directive or an Advance Care Plan and may wish to witness the resultant documentation. He or she is not required to ‘rubber stamp’ such documents drawn up on the advice of another health care professional. The GP practice may, however, wish to file such documentation and flag up its existence in the medical records to inform future treatment options for the patient.