ACP is a voluntary process whereby patients can express their preferences and goals for future care in advance of the event that they lose capacity. It is a valuable way for enhancing communication within a group of patients for whom competence for decision-making may decline with increasing frailty and disease progression. Exploring preferences for future care, in the context of individual beliefs and values, and conveying these to carers and professionals, as well as family and friends, is an important component of palliative care, and such conversations usually take place during everyday clinical care. Knowledge of patients’ values and beliefs can also guide best-interest decisions when unforeseen events occur.
• A process of discussion about future care between an individual, their care providers, and often those close to them.
• A framework to inform health professionals’ decision-making should the patient lose capacity.
• Spans the documentation of conversations that happen as apart of good end of life care between the patient and health care team regarding treatment preferences, goals, and location of care, through to formal, legally binding advance decisions.
• Opportunity to record advance decisions to refuse treatment in specific circumstances.
• Resuscitation status.
• Patient's preferred place of care and place of death.
ACP documents should be:
• Accessible at the point of care.
• Reviewed on a regular basis by the medical care team and kept up to date to reflect any changes as the clinical situation evolves.
• Referred to by health care professionals or family carers in the event that the patient loses the capacity to decide once their illness progresses.
• With permission, documented, regularly reviewed, and communicated with key people involved in care as an ACP record
Outcomes of ACP
Mental capacity legislation3 stipulates that there are three types of documented outcomes in ACP:
• Advance statements.
• Advance decisions to refuse treatment (ADRT).
• Appointment of lasting power of attorney (LPA)/welfare power of attorney (WPA).*
Advance statements (Box 8.1)
• Written statements either by the patient or written down for them with their agreement about their feelings and wishes whilst they have capacity regarding issues of their care that they would wish to be considered in the future should they lose capacity due to illness.
• Advance statements include:
• Type of medical treatment they would want or not want.
• Preferred place of care and preferred place of death.
• How they wish to be cared for.
• They are not the same as ADRTs.
• They are not legally binding, but carers under the Mental Capacity Act3 are required to take them into account when considering an individual's best interests.
ADRTs (Box 8.2)
• Previously known as living wills or advance directives.
• States what a patient does not want to happen to them and must relate to a specific treatment and a specific circumstance.
• Applicable when the patient loses capacity to consent to or refuse treatment.
• A competent (at the time of writing) adult's ADRT (e.g. CPR) is legally binding if it meets the conditions stipulated in the Mental Capacity Act 2005 (England & Wales).3
• An ADRT for life-sustaining treatment must be in writing, signed, and witnessed, and state that it applies even if life is at risk.
• Restrictions apply, e.g. basic nursing care cannot be refused, and inappropriate, clinically futile treatments, or illegal actions (such as physician-assisted suicide) cannot be demanded.
• A useful tool to support, but does not replace, discussion with patients and their carers to develop an overall picture of their wishes and preferences.
• Does not mean that treatment is being stopped now. Only comes into force in the future if the person concerned lacks capacity and the clinical situation is as described in the advance decision.
• Responsibility for keeping and presenting the advance decision or ACP lies with the patient.
• few people complete them
• sufficient evidence of validity may not be available at the time of need (e.g. in Accident and Emergency (A&E)).
To be valid the doctor needs to be sure that:
• These were the wishes of this particular patient.
• That they were competent to make this particular decision at the time of writing the directive.
• That the directive refers specifically to the decision in question.
• That there is no evidence of the patient having changed their mind in the interim or having been subject to coercion.
An individual with capacity can appoint a POA to make decisions for them if they no longer have the capacity to do so themselves in the future—LPA in England and Wales or POA in Scotland.
• POA (Scotland):
• A POA can deal with financial (FPA), property (PPA), and health/welfare matters (WPA).
• Continuing FPA or PPA can come into effect whilst a person has capacity and will continue once they no longer have capacity.
• WPA can only come into effect when the person lacks capacity.
• If a POA is not appointed then the court can appoint a financial or welfare guardian.
• LPA (England and Wales)
• An individual with capacity can appoint a LPA to make health decisions on their behalf if they lack capacity in the future.
• The LPA must be registered with the Office of the Public Guardian.
• The LPA must act according to the best interests of the individual.
• Their jurisdiction only extends to decisions regarding life-sustaining treatment if this is expressly stated in the original application.
• A valid ADRT drawn up after the appointment of an LPA must be honoured.
John was a 68-year-old man with a long history of chronic HF with severe LV systolic dysfunction due to ischaemic heart disease with previous MIs. Following his CABG 2yr previously, he had a secondary prevention CRTD inserted due to ventricular fibrillation (VF) following his operation. Unfortunately he went on to have multiple appropriate shocks from his defibrillator, requiring hospital admission. In addition he had AF, amiodarone-induced thyrotoxicosis, and problems with many HF medications due to significant symptomatic hypotension.
Understandably, after all his shocks from his device he became very anxious and at times quite agitated. He was, however, much calmer when with his family, especially his wife to whom he had been married for 25yr. With many alterations to his cardiac medications his rhythm became more stable and he stopped having multiple episodes of VT and shocks from his device. Although the shocks made him anxious he was keen to keep the device active while he felt well.
John deteriorated very quickly, but before this happened he had discussed with the cardiologist in the presence of his family what his wishes were including preferred place of care, preferred place of death, and resuscitation status. John did not want any further shocks from his device and when he deteriorated clinically arrangements were made for his device to be deactivated and an anticipatory care plan developed and communicated to all health care professionals involved in his care.
Within the anticipatory care plan there was clear guidance from the cardiologist about how to manage some the anticipated problems. As such with the support of the GP, district nurse, HF nurse and with a communication channel to the cardiologist John died comfortably at home and had no further hospital admissions.
• Regular review by key worker to spot the clinical decline early.
• Open discussion surrounding end of life issues.
• Development of anticipatory care plan.
• Clear medical management guidance from cardiologist anticipating likely problems.
• Open channels of communication between primary and secondary care.
• Communication of document to all health professionals including OOH services.
Had John gone into hospital for whatever reason the anticipatory care document and medical management plan clearly stated that John was for palliative care, that he was not to be resuscitated, and that central IV lines, inotropes and referral to intensive care would not be appropriate.
When health care professionals do not know a patient, having clear guidance from the main care team which has been put in place with the patient and family allows them to follow the patient's wishes and ensure that the patient is comfortable, as such improving the quality of care in the dying phase for the patient and their family.
• In ACP is important to ascertain and try to achieve the wishes of the patient. However, clear direction needs to be given by the medical team to all health professionals regarding the medical management of the patient.
• Whilst it is not possible to anticipate all eventualities, potential problems and their suggested management that can be foreseen should be documented.
• There should also be a clear line of communication for the GP and district nurse to obtain specialist advice if needed.
• For those patient who are admitted to hospital then the ceiling of appropriate medical therapy should be clearly documented and be accessible to all. Appropriate and clear planning can potentially prevent unnecessary and unwanted hospital admissions or facilitate early discharge.
Starting the conversation
• Doctors may feel nervous about starting the conversation, and patients may be waiting for the doctor to initiate this.
• Judging the timing of conversations, e.g. transition to end of life care, can be difficult in HF given the relapsing and remitting course.
• The question ‘Is this patient at risk of dying in the next 6 to 12 months?’ can help to identify those with whom to start the conversation about transition in goals of care and ACP leading towards end of life care.
Other possible triggers include:
• Disease progression, e.g. as assessed by NYHA class.
• Multiple hospital admissions, of increasing length.
• Deteriorating prognostic markers (see Chapter 3).
• Admission to a care home.
Skills required and content (see Chapter 4)
Adapting to the patient's pace, and maintenance of hope and optimism, are vital. A positive approach can be promoted by:
• Focusing on patient priorities now and for the future.
• Introduction of the concept of palliative care.
• A full holistic needs assessment.
• Communication is a process, not a single event.
• ACP is voluntary: no patient should be coerced into such discussions.
Department of Health (2008) End of life care strategy, [link], [link]. Department of Health, London. Available at: http://www.cpa.org.uk/cpa/End_of_Life_Care_Strategy.pdf
General Medical Council (2008) Consent: patients and doctors making decisions together. General Medical Council, London. Available at: http://www.gmc-uk.org/guidance/ethical_guidance/consent_guidance_index.asp
General Medical Council (2010) Treatment and care towards the end of life: good practice in decision making. General Medical Council, London. Available at: http://www.gmc-uk.org/guidance/ethical_guidance/end_of_life_care.asp
Scottish Parliament (2000) Adults with Incapacity Act. Office of Public Sector Information, London. Available at: http://www.legislation.gov.uk/asp/2000/4/contents
1 Royal College of Physicians (2009) Advance care planning. Concise Guidance to Good Practice Series, No. 12. Royal College of Physicians, LondonFind this resource:
2 National End of Life Care Programme (2011) Capacity, care planning and advance care planning in life limiting illness. A guide for health and social care staff. Available at: http://www.endoflifecareforadults.nhs.uk/
3 UK Government (2005) Mental Capacity Act. Office of Public Sector Information, London. Available at: http://www.legislation.gov.uk/ukpga/2005/9/contents
* Terminology may vary between jurisdictions.