Professional Reference articles are designed for health professionals to use. They are written by UK doctors and based on research evidence, UK and European Guidelines. You may find the End of Life Care article more useful, or one of our other health articles.
Treatment of almost all medical conditions has been affected by the COVID-19 pandemic. NICE has issued rapid update guidelines in relation to many of these. This guidance is changing frequently. Please visit https://www.nice.org.uk/covid-19 to see if there is temporary guidance issued by NICE in relation to the management of this condition, which may vary from the information given below.
Advance care planning (ACP) is the term used to describe the conversation between people, their families and carers and those looking after them about their future wishes and priorities for care. In some areas this is known by other terms such as personalised care planning, anticipatory care, etc, but ACP is generally the internationally recognised term used by over 40 countries. It is in line with the Mental Capacity Act of 2005. ACP now involves consideration of three possible decisions:
- Advance statements.
- Advance decision to refuse treatment.
- Lasting power of attorney.
Clinical Editor's comments (September 2017)
Dr Hayley Willacy notes a recent change to the definition of advanced 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' . Further high-quality information can also be accessed at the Gold Standards Framework website.
These are statements about the person's wishes with regard to medical treatment or social care in the future. They may be verbal or written but should be documented if possible. They are not legally binding but healthcare professionals should take them into account when capacity is lost. They may consist of specific wishes, or more general statements about beliefs and values.
Advance decision to refuse treatment
These are legally binding statements regarding refusal to specific medical treatments in the event of lack of capacity. They may not relate to basic care, such as provision of oral food and drink or prevention of bed sores. A person must be over the age of 18 to make a valid advance decision to refuse treatment and must have the capacity to make the decision.
Lasting Power of Attorney (LPA)
This is the nomination of another person to make decisions on one's behalf in the event of loss of capacity. There are two types of LPA:
- Property and affairs LPA.
- Health and welfare LPA.
These are different documents and cover different issues. A person can choose to take one or both options. An application form must be completed. Each must be registered, at a cost, with the Office of the Public Guardian in order to be used. Each must be signed by the applicant, a witness, the nominated attorney(s) and also a signatory who confirms current capacity. The latter can be a health professional but may also be anybody who has known the applicant for at least two years and does not benefit from the LPA. Furthermore, there must be a "named person" who must be notified should the LPA be registered. A person must be over the age of 18 and considered to have mental capacity to make this decision when applying for an LPA.
The Mental Capacity Act and the subsequent advance care planning options above are valid in England and Wales. In Scotland and Northern Ireland the situation is somewhat different. In Scotland, the relevant legislation is the Adults with Incapacity (Scotland) Act 2000. Advance decisions are governed by common law rather than by 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.
The advantages of advance care planning
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. Examples of such decisions include:
- The use of intravenous fluids and parenteral nutrition.
- The use of cardiopulmonary resuscitation.
- The use of life-saving treatment (whether existing or yet to be developed) in specific illnesses where capacity or consent may be impaired - for example, brain damage, perhaps from stroke, head injury or dementia.
- Specific procedures such as blood transfusion for a Jehovah's Witness.
Even if legally binding forms are not completed, the topic may motivate the individual to discuss future arrangements with their doctor, family and friends. The process is thought to help families prepare and to reduce potential conflicts.
An advance decision is legally binding in the sense that a doctor, who gave a patient life-saving treatment against their wishes expressed in an advance decision, faces legal action. The advance decision must be valid (made whilst the individual had mental capacity) and applicable to current circumstances.
The literature on the evidence base for the benefits of advance care planning throws up mixed results. On the one hand, some studies have shown that treatment in those who have been involved in advance care planning is more likely to be in accordance with their preferences, and that adverse reactions in surviving relatives are reduced[5, 6]. One UK study found advance care planning to be associated with a reduction in time spent in hospital in the last year of life. Other studies have failed to find convincing benefit to quality of end-of-life care.
Limitations of advance care planning
Both doctors and patients may be unwilling to initiate advance care planning discussions, as it involves assumptions of deterioration in their mental state in the future. There is debate about whether decisions made when healthy and/or with full mental capacity can apply to future situations of which the individual has no experience. Situations change, and capacity in some cases can be a variable state.
An advance decision to refuse treatment cannot be used to:
- Ask for specific medical treatment.
- Refuse basic care.
- Request something that is illegal (eg, assisted suicide).
- Choose someone to make decisions for you, unless that person is given LPA.
- Refuse treatment for a mental health condition (doctors are empowered to treat such conditions under Part 4 of the Mental Health Act).
A doctor may decide not to follow an advance decision to refuse treatment if:
- It involves life-saving treatment and has not been signed and witnessed.
- There is ambiguity in the wording of the directive.
- It is not applicable to the circumstances.
- It is felt to be invalid - such as:
- If it is not signed.
- If there is reason to doubt authenticity (for example, if it was not witnessed).
- If it is felt that there was duress.
- If there is doubt as to the person's state of mind at the time of signing.
The role of the GP in advance care planning
General Medical Council (GMC) guidance is clear that a GP should actively encourage people to consider advance care planning if their condition is likely to progress to impairment of mental capacity, or if they may die of their condition in the foreseeable future. GPs are ideally placed to have these discussions, as they get to know people over a period of time and may see them within the context of their home and family. They are well placed to allow the discussion to evolve over a series of consultations and to know when these discussions are best initiated. Hopefully it is within the context of a well-established doctor-patient relationship.
A GP should:
- Offer advance care planning guidance routinely.
- Be familiar with the relevant legal guidance and options available.
- Consider current mental capacity and ability to make advance decisions.
- Document all relevant discussions.
- Review existing advance care plans regularly.
- Involve the relevant specialist input where their knowledge is not adequate to be able to inform the person making the advance decisions (eg, regarding prognosis or treatment of certain cancers).
Initiating the discussion
This can be a challenging issue and requires sensitivity and communication skills. Possible triggers for initiating discussions on advance care planning might include:
- The topic being brought up by the patient.
- Diagnosis of a life-limiting disease.
- Diagnosis of a condition likely to lead to impairment of capacity - eg, mild cognitive impairment, dementia, 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 care home, loss of partner.
- At agreed intervals where there is a pre-existing plan.
Other practical tips
- Use open questions when getting people to first consider advance care planning. ("What worries you most about the future?", "How have you been coping with your illness recently?")
- Use lay language and avoid euphemisms which may be ambiguous. Equally, clarify any ambiguous statements made by the patient.
- Direct people to helpful sources of information and advice, such as the Alzheimer's Society, or the NHS guide "Planning for your future care"[10, 11].
- A sample advance decision format is given at the end of the National End of Life Care Programme guideline, among other sources such as the Alzheimer's Society website.
- Where required, LPA application forms are available from the GOV.UK website and can be downloaded or completed online.
- In concluding, reach a summary of what has been said to check mutual understanding.
- Allow for review or follow-up of the discussion.
- Always document the discussion in the records.
- Encourage the person to involve family members in discussions and to inform them of any advance planning documents they create.
- Some people may choose to have a copy of their advance decision or LPA on their medical records to refer to in future and this is to be encouraged. This makes it more likely to be accessible when required.
Assessing mental capacity
Mental capacity may vary with time and with the decision to be made. In some cases impairment of capacity may be temporary - for example, due to acute illness such as sepsis or intoxication with alcohol or other substances. In people with dementia, ability may fluctuate. In order to establish lack of capacity, you must ascertain if the person has:
- A condition which involves impairment in functioning of the mind or brain; and
- Lack of capacity to understand and retain the information required to make a decision; and
- Lack of capacity to weigh up the information given to make an informed decision; and/or
- Lack of ability to communicate the decision.
For more detailed information, refer to the separate article Mental Capacity Act.
Implications of advance decisions for health professionals
Guidelines are available from the National End of Life Care Programme to help health and social care professionals understand and implement advance decisions to refuse treatment. Where health professionals such as GPs are involved in the making of these decisions, they may be able to help make sure other health professionals are aware of their existence (eg, emergency services and out of hours care providers).
- The advance decision must be valid and applicable to current circumstances. If it is, health professionals must legally comply.
- In the event of the advance decision relating to refusing life-sustaining treatment it must be:
- In writing (as opposed to verbal).
- Signed and witnessed.
- Clearly stated that it applies even if life is at risk.
- What constitutes "life-sustaining treatment" is complex and ideally the advance decision should be very specific and clear about what is being refused. For example on some occasions, antibiotic treatment may be considered life-sustaining but on other occasions may be to improve comfort.
- The health professional should try to establish:
- If the decision has been withdrawn.
- If anything has occurred which might indicate the individual has changed or might change the decision. This includes a change of circumstances which could not have been anticipated at the time of making the decision (such as a new treatment or a change in diagnosis/prognosis).
- If the person has subsequently conferred the right to make the decision to another person by an LPA.
- Advance decisions to refuse treatment for mental disorder may not apply if the person is being detained (or likely to be detained) under the Mental Health Act.
- If the person has capacity to make the decision, the advance decision to refuse treatment is not valid and they should be consulted about their current wishes.
- People can withdraw or change their advance decisions at any time if they have capacity to do so. Original decisions should be destroyed or the changes clearly documented.
- If an advance decision to refuse treatment is considered invalid, the person's wishes and best interests must still be paramount.
- Health professionals are protected from liability if they do not follow an advance decision if they were unaware that it existed, or if they are not satisfied that one exists which is valid and/or applicable.
Further reading and references
Norals TE, Smith TJ; Advance Care Planning Discussions: Why They Should Happen, Why They Don't, and How We Can Facilitate the Process. Oncology (Williston Park). 2015 Aug29(8):567-71.
Advance care planning national guidelines; Royal College of Physicians (2009)
Parry R, Land V, Seymour J; How to communicate with patients about future illness progression and end of life: a systematic review. BMJ Support Palliat Care. 2014 Dec4(4):331-41. doi: 10.1136/bmjspcare-2014-000649. Epub 2014 Oct 24.
Rietjens JAC, Sudore RL, Connolly M, et al; Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care. Lancet Oncol. 2017 Sep18(9):e543-e551. doi: 10.1016/S1470-2045(17)30582-X.
Mullick A, Martin J, Sallnow L; An introduction to advance care planning in practice. BMJ. 2013 Oct 21347:f6064. doi: 10.1136/bmj.f6064.
Hayhoe B, Howe A; Advance care planning under the Mental Capacity Act 2005 in primary care. Br J Gen Pract. 2011 Aug61(589):e537-41. doi: 10.3399/bjgp11X588592.
Silveira MJ, Kim SY, Langa KM; Advance directives and outcomes of surrogate decision making before death. N Engl J Med. 2010 Apr 1362(13):1211-8. doi: 10.1056/NEJMsa0907901.
Detering KM, Hancock AD, Reade MC, et al; The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ. 2010 Mar 23340:c1345. doi: 10.1136/bmj.c1345.
Abel J, Pring A, Rich A, et al; The impact of advance care planning of place of death, a hospice retrospective cohort study. BMJ Support Palliat Care. 2013 Jun3(2):168-73. doi: 10.1136/bmjspcare-2012-000327. Epub 2013 Mar 15.
Muzaffar S; 'To treat or not to treat'. Kerrie Wooltorton, lessons to learn. Emerg Med J. 2010 Oct 5.
End of life care: Advance care planning, Good Medical Practice; General Medical Council, 2013
Advance decision (Living wills); Alzheimer's Society
Planning for your future care; NHS National End of Life Programme, February 2012
Advance decisions to refuse treatment: a guide for health and social care professionals; National Council for Palliative Care and NHS End of Life Care Programme (2013)