Definition of mentally ill or mental illness

For the purposes of their respective mental health acts, New Zealand and all the Australian states and territories define mental illness or disorder as follows.

Australian Capital Territory

The Australian Capital Territory (ACT) Act defines a psychiatric illness as a condition that seriously impairs (either temporarily or permanently) the mental functioning of a person and is characterized by the presence in the person of any of the following symptoms: delusions, hallucinations, serious disorder of thought form, a severe disturbance of mood or sustained or repeated irrational behaviour indicating the presence of these symptoms.

The ACT Mental Health Act also defines ‘mental dysfunction’ as a ‘disturbance or defect, to a substantially disabling degree, of perceptual interpretation, comprehension, reasoning, learning, judgement, memory, motivation or emotion’.

New South Wales

The New South Wales Act defines mental illness in the same way as the ACT but, in addition, distinguishes between a mentally ill person and a mentally disordered person, chiefly for the purposes of determining need for involuntary admission and treatment.

A person (whether or not the person is suffering from mental illness) is mentally disordered if the person’s behaviour for the time being is so irrational as to justify conclusion on reasonable grounds that temporary care, treatment or control of the person is necessary for the person’s own protection from serious physical harm or for the protection of others from serious physical harm.

New Zealand

In New Zealand, the Mental Health Act defines a mentally disordered person as possessing an abnormal state of mind, whether continuous or intermittent, characterized by delusions or by disorders of mood, perception, volition or cognition to such a degree that it poses a danger to the health or safety of the person or others, or seriously diminishes the capacity of the person to take care of themselves.

Northern Territory

In the Northern Territory, mental illness means a condition that seriously impairs, either temporarily or permanently, the mental functioning of a person in one or more of the areas of thought, mood, volition, perception, orientation or memory and is characterized by the presence of at least one of the following symptoms: delusions, hallucinations, serious disorders of the stream of thought, serious disorders of thought form or serious disturbances of mood. A mental illness is also characterized by sustained or repeated irrational behaviour that may be taken to indicate the presence of at least one of the symptoms mentioned above. The Northern Territory Act goes further to specify that the determination of mental illness is only to be made in accordance with internationally accepted clinical standards.

Similar to the New South Wales Act, there is a provision in the Northern Territory for those who are ‘mentally disturbed’, which means behaviour of a person that is so irrational as to justify the person being temporarily detained under the Act. The Northern Territory also has provisions for people with complex cognitive impairment who require involuntary treatment.

Queensland

The Queensland Act defines mental illness in a similar way to Victoria, in that it is a condition characterized by a clinically significant disturbance of thought, mood, perception or memory, in accordance with internationally acceptable standards.

South Australia

In the South Australian Act, mental illness means any illness or disorder of the mind.

Tasmania

A person is taken to have a mental illness if they experience temporarily, repeatedly or continuously, a serious impairment of thought (which may include delusions) or a serious impairment of mood, volition, perception or cognition.

Victoria

A person is mentally ill if they have a mental illness, being a medical condition characterized by a significant disturbance of thought, mood, perception or memory.

Western Australia

Persons have a mental illness if they suffer from a disturbance of thought, mood, volition, perception, orientation or memory that impairs judgement or behaviour to a significant extent.

Introduction

The investigation into the circumstances surrounding a death is an important part of a civilized society. Accurate recording of the cause of death serves many purposes, including accurate disease surveillance, the detection of secret homicide and the detection of potentially avoidable factors that have contributed to a death. Various death investigation systems exist around the world. The UK uses the coronial system, Scotland the procurator fiscal. By virtue of the patient population encountered by emergency physicians and the types of deaths that are subject to investigation, emergency physicians may expect to find themselves in contact with either the coroner or the procurator fiscal system during their working lives, thus necessitating an understanding of the workings of these systems.

History of the coroner

The history of the coroner’s office is an interesting reflection of events that shaped our civilization and is in constant evolution. The Shipman Inquiry (2003) and the Fundamental review of Death Certification and Investigation (2003) identified problems within the services available to bereaved families and the process of death certification and led to a reform of the system in the UK in the form of the Coroners and Justice Act 2009.

The office of the coroner was established in 1194 and its primary function then was that of protection of the crown’s pecuniary interests in criminal proceedings. The coroner was involved when a death was sudden or unexpected or a body was found in the open; however, aside from the duty to ensure the arrest of anyone involved in homicide, the coroner held a significant role in the collection of the deceased’s chattels and collection of various fines [1].

Introduction of the Births and Deaths Registration Act in 1836, mandated registration of all deaths before burial could legally occur. This may have arisen out of concern regarding accurate statistical information concerning deaths, but also concern about hidden homicide. Another act introduced the same year enabled coroners to order a medical practitioner to attend an inquest and perform an autopsy in equivocal cases. The Coroners Act of 1887 saw a shift of emphasis from protection of financial interests to the emphasis that remains today, namely the medical cause of death and its surrounding circumstances with eventual community benefit in mind.

The Broderick committee was appointed in 1965 to review death certification in response to adverse publicity about inquests and pressures to improve death certification. Their report published in 1971 contained 114 recommendations, many of which were enacted. Table 25.2.1 lists the reasons the Broderick Committee considered the purpose of an inquest [2].

The Coroners Act (1988) states that a coroner shall hold an inquest into a death when there is:

The Coroners and Justice Act 2009 introduced changes to the structure and appointment system for coroners, more flexibility between working areas of coroners and the mandate for all coroners to have held a legal qualification for 5 years, which was intended to standardize practice and ensure sufficient legal understanding for coroners. The new appointment of a chief coroner, with a senior legal background, and with annual reporting to the government, was recommended to be responsible for establishing national training and governance standards and developing a charter for improving services to bereaved families. The death certification system under the Act was modified to provide consistency whether the body is buried or cremated and to ensure that adequate scrutiny of the circumstances around the death happens and is documented. The introduction of a medical examiner attached to a primary care trust to scrutinize all death certificates prior to burial or cremation replaced the previously medically unqualified registrar.

Structure of the coroner system in the UK

Coroners are independent judicial officers who have a legal background, including having been a qualified barrister or solicitor for at least 5 years and, in addition, some may also have a medical background. They are responsible to the Chief Coroner, a senior legal practitioner who must have previously held the position of high court or circuit judge and, ultimately, is responsible to the Crown through the Lord Chancellor. They must work within the laws and regulations that apply to them: The Coroners and Justice Act 2009 replaced the previous framework as described in The Coroners Act 1988, Coroners Rules 1984 and the Model Coroners Charter. There are approximately 148 coroner’s districts throughout England and Wales and each district has a coroner and a deputy and possibly several assistant deputy coroners. Coroners are assisted in their duties by coroner’s officers, who are frequently police officers or ex-police officers and whose work is dedicated solely to coronial matters. This follows long-established practice and has probably arisen because of the significant proportion of cases in which police are the notifying agent. The nature of a coronial investigation requires a person to possess knowledge about legal matters and skill in information gathering. From a practical viewpoint, the coroner’s assistants may be responsible for performing such duties as attending the scene of a death, arranging transport of the body to the mortuary, notification of the next of kin and obtaining statements from relevant parties. Clearly, variation in the structure of the service between regions is inevitable and reflects the size, composition and workload within the district [4].

The 2009 reforms to the coronial process

The UK coronial system underwent fundamental changes following the Coroners and Justice Act 2009, which constituted the first major reforms of the existing system for over 100 years. It included changes to the investigation process for certain deaths previously governed by the Coroners Act 1988.There were also reforms of the certification and registration of deaths. The need for reform was galvanized by several landmark cases including the Shipman Inquiry (2003), in which the system had not identified and isolated a pattern of criminal activities spanning years by the UK GP Dr Harold Shipman, and the Fundamental Review of death Certification and Investigation (2003) which revealed a number of problems and inconsistencies in the process of death certification and the services available to bereaved relatives. Other findings prompting reforms included a lack of leadership and training for coroners and a perceived deficiency of medical knowledge within the system. The structure, training and appointment systems for coroners were changed to include a Chief Coroner, improved training and guidance for coroners, who have to be legally qualified, and powers allowing evidence to be obtained, with search and entry where necessary. Changes to the process for issuing a death certificate include the replacement of a non-medically qualified registrar with a Medical Examiner, reporting to a Chief Medical examiner, who scrutinizes and, if necessary, recommends investigation, following the issuing of the death certificate.

Outline of the coronial system

Upon notification of a death, the coroner makes initial inquiries and may direct a pathologist, who is generally a specialist forensic pathologist, to perform a post-mortem autopsy. Sometimes it becomes clear at this early point that the death is a natural one and does not fall within the Coroners Act, thus no further investigation is required and a death certificate is issued. In other circumstances, further investigations occur and relevant information is gathered. If the coroner is subsequently satisfied that the death is natural, again no inquest is required. In other cases, or in certain prescribed circumstances, an inquest is held. At the conclusion of an inquest, a finding or verdict is delivered. This verdict must not be framed in a way that implies civil or criminal liability.

Reportable deaths

As opposed to the Australasian situation, there is no statutory obligation in the UK for a doctor or any member of the public to report certain deaths to the coroner, however, an ethical responsibility exists and it is recognized practice to do so in particular circumstances. A 1996 letter from the Deputy Chief Medical Statistician to all doctors outlined these circumstances (Table 25.2.2) [5].

Each booklet of medical death certificates also contains a reminder of the deaths that a coroner needs to consider. The list is not exhaustive.

Scotland

In Scotland, the role of death investigation is undertaken by the procurator fiscal’s office, which is also responsible for the investigation and prosecution of crime and also has responsibility for any treasure found within the district! The registrar of births and deaths in Scotland has a statutory duty to report certain deaths, for example, those due to industrial disease and those occurring during surgery, to the procurator fiscal. The spectrum of deaths investigated is essentially the same as in England and Wales; however, more specific guidelines regarding deaths possibly related to medical mismanagement are provided (Table 25.2.3).

Introduction

Consent is necessary for any clinical intervention performed on a patient and the higher standard of informed consent has become accepted.

Consent is an essential basis for any medical intervention and has ethical, legal and administrative elements [1].

Historically, the need for consent may have been applied more variably than today. The American physician, Oliver Wendell Jones said in 1871 to his students: ‘your patient has no more right to all the truth than he has to all the medicine in your saddle bags and should get only so much as is good for him’ [2]. Self-determination was addressed in 1914 by Justice Cardozo who said: ‘every human being of adult years and sound mind has a right to determine what shall be done with his own body’ [3]. The pendulum has recently swung in the direction of patient autonomy and informed choice to the extent that clinicians now need to go to extensive efforts to ensure that enough specific information is given to the patient prior to consent being obtained and the threat of successful litigation, although rare, serves as a potent stimulus to this.

Respect for patient autonomy is enshrined within consent law and to impose care or treatment on patients without respecting their wishes is illegal and unethical.

Consent serves to protect the patient from assault and battery, namely unwanted medical interventions. The more exacting standard of informed consent requires that the patient be given and understand adequate and appropriate information specific to the procedure or intervention to be performed. There is debate around what defines reasonable consent practice in different clinical circumstances. There is also debate around the ethical and legal interpretations of the principles underpinning informed consent, which may vary according to local jurisdiction, subjective interpretation and may, in practice, deviate from the theoretical ideal.

Legally, informed consent protects the patient from assault and protects the clinician from an allegation of assault. On an ethical level, the clinician should aim to facilitate autonomous decision making around treatment goals as jointly agreed with the patient. From an administrative point of view, consent documentation serves as proof of a systematic check that the patient received information concerning, and agreed to, the procedure undertaken. The consent form is only the documentation of consent having been obtained and should not be seen as equivalent to or a substitute for the consent process.

Consent

All medical treatment is based on legal and ethical principles. The four basic ethical principles in medicine are:

Competence

The terms ‘competence’ and ‘capacity’ are often used interchangeably in the context of informed consent. The patient must be competent to give the consent or to refuse.

For consent to be valid, it must be given by a person who has the capacity to make that decision which, generally, will be the patient. The default assumption should be that the adult patient has capacity unless clinical assessment clearly finds otherwise [11]. Indicators that the patient may not have intact capacity and may need a more detailed assessment of capacity, include decisions at odds with the treatment advice without a rational explanation, decisions that change with no clear justification and decisions taken on the background of failure to understand the discussion around treatment options for any reason. Capacity may fluctuate in either direction, for instance, in a patient with altered cognition due to alcohol or recreational drugs, and it may be necessary to reassess capacity prior to performing the procedure. The assessment of the competence or capacity of adults to make decisions on their own behalf is a functional one that requires more than cognitive testing with a tool such as the mini-mental status examination, although this should be performed and documented as part of the assessment process. Assessment of competence should be sought and conducted by the doctor proposing the treatment or investigation and should not be delegated to other colleagues, although in complex situations of impaired capacity, a psychiatric opinion may be helpful and legally advisable.

The essential elements required to demonstrate competence are:

Questions that may be of assistance in assessing capacity are listed in Table 25.3.1. Third parties, such as relatives, are unable legally to provide consent, although it is frequently assumed that they are; however, it is a long-established practice and frequently a useful exercise to involve relatives in the process of determining what the patient would have wanted in a particular circumstance. They may also provide valuable information during the process of competence assessment regarding a person’s set of values and beliefs, cultural considerations and usual behaviour.

Patients may make an advance statement or living will detailing their wishes for medical treatment should they become incapacitated at a later date in the form of a written document or witnessed oral statement. This is legally binding provided the patient is an adult and was competent at the time made and the statement can be proven to be legally valid and applicable to the current circumstances. This is often difficult to validate in an emergency situation and, if doubt exists about validity, a court ruling should be sought.

Patients who may be incompetent to consent (Table 25.3.2)

Children and adolescents

The legal age of consent in Australasia has changed in the last quarter of a century from 21 to 18 years and, in some circumstances, to 16 years or less. This has occurred against a background of differing ages at which persons may vote, buy tobacco or alcohol, drive cars or engage in sexual activity. There is ongoing debate in both Australia and the UK around the age at which a child may be considered competent to consent, as tested in the cases of Gillick [12] in the UK and Marion’s case [13] in Australia (Table 25.3.3). In the UK, the principle of decision making by a proxy grants a parent or guardian, or a designated person or local authority, the right to give consent. If the proxy is unavailable in an emergency, the principle of necessity justifies treatment provided it can be demonstrated that any decision is taken in the best interests of the patient.

The most important factor to be considered is the competence of the patient to understand what is wrong and what the treatment entails. This has more to do with intellectual and emotional maturity than chronological age. It would be reasonable for a 14-year-old girl to consent to appendicectomy, but quite unreasonable to expect the same person to understand the consequences of hysterectomy. In a genuine emergency, the care of the patient is the most important factor and the absence of a parent or guardian is not a bar to an emergency procedure. Should treatment of a minor be required and valid consent not obtainable, the steps taken to obtain consent and the reason why the treatment must be carried out must be clearly documented. If at all possible, the opinion of a second equally or more senior clinician should be documented. Many hospitals require that, in such circumstances, the hospital medical director or delegate give approval. This is simply a means of ensuring that the hospital is aware of the situation and accepts responsibility.

A special situation occurs for children whose parents hold religious beliefs that proscribe the administration of blood products. This creates a situation where the child is incompetent and the parents do not consent. There is now almost standard legislation that allows the attending doctors to certify that blood transfusion is required to sustain life and to then administer the treatment despite opposition from the parents in the best interests of the patient.

Intellectually impaired

For consent to be valid, the patient must be able to understand the nature of the condition, the options available and the treatment being recommended, plus the material risks and the possible outcome of any potential treatments.

The mildly intellectually impaired patient may be able to satisfy these criteria, but the more severely disabled will not be in a position to give valid consent. In the latter situation, in Australia, the guardian or regional Guardianship Board would have to be involved in all but the most urgent cases and there is legislation that covers the protection and administration of incompetent patients. The Board is available to give timely help and has the authority to conduct hearings, receive evidence and make decisions on behalf of incompetent persons. This provides protection for the patient and the doctor. Emergency physicians should ensure that they are aware of how to contact their local Board, both in and out of working hours.

Mentally ill

A diagnosis of mental illness does not automatically preclude a patient from giving consent. The attending doctor must decide on the competence of the patient to consent. The attending psychiatrist may be in a position to assist. If the patient is not competent then the relevant mental health legislation must be considered. Within Australia, the regional Guardianship Boards should be consulted. In the UK, The Mental Capacity Act Deprivation of Liberty Safeguards protects patients in hospitals or care homes from harm.

In an emergency where life or quality of life is seriously threatened and time is of the essence, the facts should be recorded and treatment commenced. A sound knowledge of the mental health and guardianship legislation relevant to the region is essential.

Patient disabled by drugs or alcohol

When a patient is temporarily disabled by drugs or alcohol, the situation is less clear. Legal and medical opinions do not always agree, especially in respect of capacity and blood alcohol readings. The absolute legal position is unclear as to whether an intoxicated person can give consent, but there is no doubt that any clinician who acts in the best interest of the patient will always be on solid ground in the event of legal challenge.

Restraint may be justified in order to prevent patients taking their own discharge with adverse consequences. In these complex situations, it is worth considering whether it is better to be sued for assault and wrongful imprisonment or to be sued for the damage that followed to a patient who was allowed to leave. It may be possible to ask the regional Guardianship Board for help in Australia and the hospital medical director for advice in both Australia and the UK, but there will be occasions in which immediate decisions must be taken and the best rule is to do whatever would be the best for the patient in the longer term. Again, documentation at the time and the signatures of witnesses will help if the court is involved.

The emergency patient

There has been little written about the patient who requires emergency care but is temporarily incapable of providing consent. The overriding principle, however, is one of the duty of care owed by the clinician to the patient. There is also an obligation to explain to the patient what has been done as early as is reasonable in the recovery phase.

The emergency physician must know the essentials of consent and the differences between implied, verbal and written consent. A sound knowledge of regional mental health and guardianship legislation is required. There must be adequate and contemporaneous documentation of decisions. If it is clear that the clinician was acting in the best interests of the patient and that the processes followed were deemed to have been logical and necessary in an emergency situation, it increases the chance that the law will be applied pragmatically.

Emergency physicians work in an environment of multiple simultaneous demands. With respect to critically ill and injured patients, detailed information regarding presentation, past history, cultural considerations and usual level of functioning is often lacking and may, in fact, be wrong. A clinician may have little time to make a detailed assessment before a treatment decision is required. Similarly, the information available at a point in time may be lacking or may change later. Emergency physicians often make complex decisions at short notice with little background information. In situations where decisions have been made on behalf of a patient who is felt to be incompetent, it is important to document carefully the information available at the time and the differential diagnosis and reasons for the course taken. It is good practice also to seek the assistance and advice of a senior colleague where the competence of a patient is in doubt and significant interventions are deemed necessary.

The informed consent process should be driven by the desire to enable and support an appropriate treatment choice by a patient, rather than the fear of litigation and is a core skill within emergency medicine.

Introduction

An individual’s right to privacy and confidentiality has gained increasing recognition over the past decade. In an emergency setting, where patients are more vulnerable because of illness or injury, staff are often provided with confidential family and legal information, which would otherwise not be divulged, trusting that this will only be used to assist in the care of the patient. The law preserving confidentiality in public and private hospitals, day procedure centres and community health centres (called ‘relevant health services’ in the Act) is to be found in the relevant sections of individual state and territory Health Services Acts [1–3]. The section applies to the health service itself, the board of the service or a person who is or was a member of the board, a delegate to a board, a proprietor of such a service or engaged or employed in a service or performing work for it. These people are generally prohibited from disclosing information that could directly or indirectly identify a patient. In addition, the individual state or territory’s health records act and the Privacy Act 1988 (Commonwealth) confer statutory privacy rights on patients, whether they are treated in a public or private facility. Both Acts set up complaint procedures for patients who believe confidential information about them has been unlawfully disclosed to a third party. New Zealand has similar legislation [4].

Physical privacy

Emergency departments (EDs) are necessarily designed in an open plan to increase efficiency, observation and communication, but these requirements do intrude on privacy, particularly if cubicles are separated by curtains rather than solid walls. Consultations may be overheard during history taking and when discussing patients with other medical staff or specialists, either directly or by telephone.

Patient privacy incidents occur frequently in an ED, risk factors being length of stay and absence of a walled cubicle. Patients who have their conversations overheard are more likely to withhold information and less likely to have their expectations of privacy met [5]. Privacy and confidentiality are challenged by physical design, crowding, visitors, film crews, communication and other factors [6].

Prior permission should be obtained from the patient to allow students, nurses, other medical officers to be present during history taking, examination and procedures. This applies both in public and private hospitals. Some aspects of privacy in healthcare in the ED relate to confidentiality while being assessed (being overheard, being seen, being exposed and being embarrassed), which relate to ED design, staff awareness, sensitivity and care. ED staff may be unaware how their routine behaviour may infringe on patient privacy [7].

Staff bays are now often enclosed by glass screens to prevent others from hearing details on a patient’s history or to prevent patients from becoming unnecessarily alarmed by discussion of serious differential diagnoses, which may need to be excluded. Inappropriate or unprofessional comments by staff may also be heard [8].

When the patient is an adolescent, privacy needs may exclude communication with a parent. An understanding of the relevant informed consent law relating to minors is required [9]. The federal Privacy Act does not specify an age at which a child is considered of sufficient maturity to make his or her own privacy decisions. Doctors need to address each case individually, having regard to the child’s maturity, degree of autonomy, understanding of the circumstances and the sensitivity of the information being sought [3].

It is only within the last 5 years that the almost universal ‘whiteboard’ has virtually disappeared. This was a popular and useful management tool in EDs, displaying the patients’ names, working diagnoses, locations and management plans. They were easily visible to anyone who came into the department. To preserve privacy and confidentiality, it was inevitable that they were withdrawn despite strong opposition from ED staff, claiming that this would lead to disruptions in patient care, coordination and flow. These problems did occur during the change-over period, but staff adapted well and the advent of patient-tracking computer systems means that each monitor now provides more clinical information than the whiteboard ever did.

Well-known people (VIPs, politicians, media personalities and sports stars) need even more privacy than others, since they may be accompanied by support staff and, perhaps, a bevy of reporters who may be difficult to control, armed with video cameras and portable recorders. They cannot be restricted until the patient is actually inside the hospital building, after which security is in charge. Even when outside the building, most will accept advice to remain in a provided access zone where they may use their cameras or microphones without intruding on the privacy of other patients or their subject of interest. Hospital staff involved in the care of such patients may also wish to have their own privacy protected. Most hospitals now have media relations officers to take on the role of providing regular updated bulletins.

Healthcare providers

There is also the important matter of privacy for health providers. Whether full names should be displayed on identity badges is debatable. Details of contact numbers and home addresses of consultants, medical staff and nurses must be kept confidential, as there are cases of disgruntled or psychotic patients harassing and stalking clinical staff. Even if the request for contact details is innocent, it is an invasion of a healthcare worker’s privacy for that information to be released without consent. In addition to the statutory offences of breaching confidentiality, doctors and other healthcare providers may be sued at common law if they divulge confidential information without a patient’s consent. The patient may sue for breach of contract or because the doctor has been negligent in disclosing the information. It should be noted that it is lawful for a health professional to disclose information if:

Mandatory reporting

Mandatory reporting overrides privacy laws where they are for the purpose of protection of the health of individuals or communities. Examples are:

This becomes more difficult when there is merely a suspicion, but doctors are protected if they report on this basis only. The laws vary between jurisdictions.

Police

Assistance must be given to the police when a criminal offence has been committed. In such cases, patient name, date of birth, address, nature of incident, description of injuries and conscious state may be released. An opinion of causation must not be stated.

If an injured patient is suspected of being a crime victim or perpetrator and may be a danger to that patient’s or another’s life, it is the doctor’s civic duty to inform police of the circumstances [11].

If a police enquiry is made by telephone, record the name, station, contact number and request and advise that the information will be obtained and provided. The given contact number must be checked to ensure if it is genuine before providing information, heeding the principles of confidentiality.

With police statements, the doctor should state credentials and experience before giving details of alleged history and physical findings. It is important to be objective and to avoid venturing opinions outside a doctor’s area of expertise. It is preferable for all police statements to be written by the ED director, so that a confidential record is kept of all statements issued.

Assistance is also given to help police identify missing or deceased persons.

Blood samples may need to be collected by law for drug or alcohol screening for patients involved in motor vehicle accidents. These are provided to police for testing.

Forensic issues

All deaths from unknown, unexpected, unnatural, accidental, violent or suspicious causes must be reported to the state coroner. This also includes cases of unknown identity, during or after surgery, in custody, a ward of the state, requested by next of kin or where unable to issue a death certificate.

Patient health information

Privacy of patients’ health information refers to:

Legislation

Confidentiality of health information has been the focus of legislation over recent years.

The Privacy Act 1988 [1] applied only to the Australian Commonwealth public sector, but steps were taken early on to introduce it to the private sector, resulting in the Privacy Amendment (Private Sector) Act 2000 becoming law to cover the private (and public) health sector in December 2001 [2]. Patients who have been treated in public hospitals are able to gain access to their medical records by means of the relevant state or territory freedom of information act, e.g. Freedom of Information Act 1982 (Vic). Patients treated in a private hospital, by a private doctor or other private health professional, have a right to gain access under the relevant state or territory health records act, e.g. Health Records Act 2001 (Vic) and also under the Privacy Act 1988 (Commonwealth).

In New Zealand, the Privacy Act was enacted in 1993 and was used to develop the Health Network Code of Practice and Health Information Privacy Code 1994, which was further modified by the Health Information Standards Organization in 2005 [5].

Australian privacy principles [12]

The 13 Australian Privacy Principles (APPs) replace the National Privacy Principles (NPPs) for organizations from 12 March 2014. The APPs are found in the Privacy Amendment (Enhancing Privacy Protection) Act 2012 (Commonwealth). The amendments to the Privacy Act introduce the concept of a ‘permitted general situation’ and a ‘permitted health situation’. The existence of a permitted general situation or permitted health situation is an exception to various obligations in the APPs. A new section 16A outlines seven permitted general situations, where the collection, use or disclosure of personal information about an individual, or of a government-related identifier, will not be a breach of certain APP obligations.

New section 16B outlines five permitted health situations, where the collection, use or disclosure of certain health information or genetic information, will not be a breach of certain APP obligations.

APP1

APP1 requires hospitals or healthcare agencies to have ongoing practices and policies in place to ensure that they manage personal information in an open and transparent way. APP1 introduces a new requirement for agencies to have a clearly expressed and up-to-date policy about the management of personal information by the agency. APP1 specifies the minimum information that should be included in the agency’s APP privacy policy. An agency needs to take reasonable steps to make its APP privacy policy available free of charge and in an appropriate form. The agency must take reasonable steps to provide the policy in a particular form if requested by an individual or body. APP1 also requires an agency to take reasonable steps to implement practices, procedures and systems that will ensure compliance with the APPs and any registered APP codes and enable the agency to deal with inquiries and complaints by individuals.

APP2

APP2 deals with anonymity and pseudonymity and allows individuals to interact with agencies while not identifying themselves or by using a pseudonym. Both requirements are subject to certain limited exceptions, including where it is impracticable for the agency to deal with individuals who have not identified themselves or where the law or a court/tribunal order requires or authorizes the agency to deal with individuals who have identified themselves.

APP3

APP3 outlines when and how an agency may collect personal and sensitive information that it solicits from an individual or another entity. An agency must not collect personal information (other than sensitive information) unless the information is reasonably necessary for, or directly related to, one or more of the agency’s functions or activities. The APPs impose obligations on agencies regarding sensitive information for the first time. APP3 deals with the collection of sensitive information by agencies, which is not permissible unless certain exceptions apply. An agency must only collect personal information from the individual, unless an exception applies. In EDs, it is sometimes difficult to obtain an accurate history, due to the patients’ anxiety about their presenting symptoms. More accurate information may become available after they have had a chance to collect their thoughts, or to affirm areas of their history with family or other witnesses. It is useful to recheck details that may not fit a working diagnosis.

Medication histories are often also inaccurate, since the patient may not be responsible for self-administration or may obtain tablets from a prepackaged dispensing system. Computerized GP letters often have all medications ever prescribed for that patient by the GP practice and, to be accurate, every medication should be checked with the patient or carer to ensure their currency. Patients are not obliged to give their reason for requesting access. Patients do not have immediate right to investigation results. The doctor ordering the tests must be given the opportunity to assess and discuss the results; otherwise there is the risk of misinterpretation.

APP4

APP4 introduces new obligations for agencies in relation to unsolicited personal information. Where an agency receives unsolicited personal information, it must determine whether it would have been permitted to collect the information under APP3. If so, APPs 5 to 13 will apply to that information. If the information could not have been collected under APP3 and the information is not contained in a Commonwealth record, the agency must destroy or de-identify that information as soon as practicable, but only if it is lawful and reasonable to do so.

Computerized patient data must only be accessible to authorized personnel by password-protected access [10].

APP5

APP5 specifies certain matters about which an agency must generally make an individual aware at the time of, or as soon as practicable after, the agency collects their personal information. Patients do have a right to access opinion as well as factual material, including a specialist’s report, whether or not the report states that it is not to be shown to the patient without the patient’s consent [3].

APP6

APP6 outlines the circumstances in which an agency may use or disclose the personal information that it holds about an individual. If an agency collected personal information for a particular purpose, it must not use that information for any other purpose unless:

In addition, disclosure is allowed if:

APP7

APP7 regulates the use and disclosure of personal information by organizations for the purpose of direct marketing.

APP8

APP8 introduces an accountability approach in relation to an agency’s cross-border disclosures of personal information. Before an agency discloses personal information to an overseas recipient, the agency must take reasonable steps to ensure that the overseas recipient does not breach the APPs (other than APP1) in relation to that information. In some circumstances, an act done, or a practice engaged in, by the overseas recipient that would breach the APPs, is taken to be a breach of the APPs by the agency. Hospitals may transfer health information to countries where similar privacy laws exist. Consent needs to be obtained from the patient when in doubt or when sending to countries where no such protection exists.

APP9

APP9 prohibits an organization from adopting, using or disclosing a government-related identifier unless an exception applies. In some settings, such as counselling in HIV/AIDS or sexual health, there are instances where anonymity is requested and granted. In the case of public or private hospital EDs, for providing a safe health service and for billing and rebate purposes, doctors are required to record the identity of the patient [3].

APP10

Under APP10, an agency must take reasonable steps to ensure that the personal information it collects is accurate, up-to-date and complete. An agency must also ensure that the personal information that it uses or discloses is accurate, up-to-date and complete and relevant, having regard to the purpose of the use or disclosure.

APP11

APP11 requires an agency to take reasonable steps to protect the personal information it holds from interference, in addition to misuse and loss and unauthorized access, modification and disclosure. APP11 imposes a new requirement on agencies to take reasonable steps to destroy or de-identify information if the agency no longer needs the information for any authorized purpose, unless:

APP12

APP12 requires an agency to give an individual access to the personal information that it holds about that individual, unless the agency is required or authorized to refuse to give access by or under the Freedom of Information Act 1982 or any other Commonwealth or Norfolk Island legislation that provides for access by persons to documents. Agencies must respond to requests for access within 30 days. Agencies must give access in the manner requested by the individual if it is reasonable and practicable to do so and must not charge for this access.

APP13

APP13 requires an agency to take reasonable steps to correct personal information to ensure that, having regard to a purpose for which it is held, it is accurate, up-to-date, complete, relevant and not misleading.

Introduction

To be ethical in emergency medicine is to do the right thing for the patient. However, this can be challenging in the context of urgency, uncertainty and impaired patient competence.

How do we know if we should let the intoxicated head-injured patient leave the emergency department (ED) without being fully assessed? How do we decide if the decision of the elderly lady with the fractured neck of femur not to have surgery should be honoured? How could we possibly know what the unconscious cardiac arrest patient wants?

Briefly, decisions about such cases can be guided by a number of tools for clinicians who work among the ethical complexities of emergency medicine. This approach is based on current, popular bioethics. Although it is reasonably generic, there will be places and times when it fits less well. In emergency medicine, standardized processes are popular and the toolkit below suggests a standardized approach to ethics. However, in practice, ethics must be individualized to the patient in front of us. Good clinicians need to superimpose their own morality and understanding of the patient and the patient’s context. This involves a unique interaction with the person the patient is. Ultimately, the aim is to facilitate a process whereby the patient’s true autonomous wishes are honoured. The nature of emergency medicine makes this challenging, but not impossible.

Ethics and law

The ethics methodology described here is a relatively simple approach, to be applied in specific cases, taking into account the peculiarities of the patient’s medical condition and the patient’s ‘world view’. However, this methodology, and ethics in general, struggle to arrive at an indisputable, definitive answer. The law, however, intends to arrive at a definitive answer so that a determination can be made regarding the lawfulness of what was done. The law uses a combination of statute (written law) and precedents (previous interpretation of written law in specific cases) to come to this determination. It is a complex methodology which is best applied retrospectively once all the facts are known. In emergency medicine, ethics is an easier model to use as it can be applied prospectively while there is still uncertainty. However, it is the law which is called upon, from time to time, to determine the ‘rightness’ of medical decision making. Good ethics, well documented, should see the law get behind the medical decision making. However, the decisions of emergency physicians need to be consistent with local law. In reality, this places the emergency physician in a difficult situation, being required to act in keeping with the law, yet with an incomplete knowledge of the law and, at the time of decision making, dealing with many unknowns. Generally, the law is sufficiently consistent to apply ethics with confidence but there are some local differences, particularly regarding how consent might be obtained and who might give it (particularly the acceptance of proxy consent – that is consent from relatives), which should be well known in relevant emergency departments.

Ethical decision making – influences and processes

The words ‘ethics’ and ‘morals’ have origins in different languages but their origins have similar meanings – ‘the done thing’ or ‘the right thing to do’. The use of the words in the English language generally has morals or morality as qualities of an individual and ethics as a description or study of those qualities. However, they both relate to ‘doing the right thing’.

What encourages us to do the right thing?

An individual’s morality is a manifestation of the interactions of many influences, including belief, upbringing, culture, societal influences and professional obligations. Some of these are internal drivers of behaviour (for example, religious or other beliefs), others are ‘internalized’ (for example, societal codes of conduct which are learnt and become habit) and some are ‘external’ (for example laws and professional codes which are obeyed for fear of the consequences if not). The relative contribution of these influences varies from person to person and from context to context. Whatever that mix in an individual doctor, it is a prerequisite for ethical practice that the doctor is of good moral character.

The method of decision making we employ might be ‘utilitarian’ or ‘deontological’ [1]. A utilitarian approach considers the outcomes of actions and values the positive balance of good over bad (or benefit over harm) that ensues. A deontological approach values actions that adhere to overriding moral principles.

Considering the influences on morality and the methods of decision making we might, for example, be nice to our patients because we are nice people (internal morality), we have learnt that being nice is the right thing to do (internalized morality), the code of ethics of our professional body instructs us to be nice (external morality), we believe that being nice is a governing principle of behaviour (deontology) or we think that being nice means patients are less likely to complain about us (utilitarianism). Of course, these are not mutually exclusive and, in practice, there is a mix of all of these influencing our behaviour.

In addition to the clinician’s mix of morality and decision-making methodologies, patients’ choices will be influenced by their own morality and ‘world view’. Some individuals are influenced considerably by spirituality or religion and some cultures have a predominance of such individuals. A deontological approach has appeal in this context. Some individuals have no such influence and instead are influenced by a rational consideration of utility. Some cultures champion the individual’s freedom to determine his or her own destiny. Other cultures consider a group, often a family group, as appropriate to make decisions on behalf of the individual. In some cultures, there is a relatively high level of respect for authority (power differential), so there might be a reluctance to question those of perceived authority, such as doctors. In other cultures, there is less of a barrier to questioning authority, potentially allowing a better exchange of information.

These three dimensions help define the context in which the patient considers ethical decisions: ‘belief’ versus ‘rationality’; ‘individualism’ versus ‘collectivism’; and ‘high power differential’ versus ‘low power differential’. Popular medical ethics of this time tends to come from a Western context of rationality, individualism and relatively low power differential. It is appreciated that this context is not applicable to all. Of most importance, the individual patients we manage have varying positions on each of these three dimensions. Just as one model does not fit all contexts, in the same ED, one model does not fit all patients. One of the challenges we face is to welcome the patient’s perspective (context, values, world view) into the process of decision making.

The contributions to our morality and our processes of ethical decision making are a complex and variable mix, but that does not mean we cannot employ a standardized process for decision making. A song varies in sound depending on who sings it – the music does not change, it is the quality of the voice that makes the difference. So, with the ‘tools’ that follow – it is the quality of the individual’s morality that makes these tools work to best effect.

An ethics toolkit for the emergency department

In emergency medicine there are many aspects of ethics relevant to our practice, including research ethics, professional ethics, ethical issues in resource allocation and so on which, although relevant, are not peculiar to the ED. However, there are two dilemmas which are common in EDs:

The following ‘tools’ in ethical deliberation provide a structure for decisions in these two areas (Box 25.5.1).

Tool 1: the four principles (Box 25.5.2)

Beauchamp and Childress [2] combined the traditional principles of Hippocrates (try to help and try not to harm) with a consideration of the rights of the individual to determine their own destiny and the rights of others who might be affected. In so doing, they described four principles that offer a pragmatic structure for deliberation. Although the ‘Principlism’ of Beauchamp and Childress has attracted criticism, it remains a popular and useful starting point.

Autonomy describes the patient’s right to determine his or her own destiny. However, there are occasions in emergency medicine when respecting autonomy is difficult because the patient’s competence is impaired or there are other influences undermining his or her autonomy.

Beneficence is the principle of acting in a way that benefits the patient. Non-maleficence, or the principle of avoiding harm, is attributed to Hippocrates. All medical interventions have the capacity to harm and it is unrealistic to expect to ‘do no harm’. Instead, we proceed if the benefit/harm balance is acceptable to the patient. When the benefits and harms are determined by the doctor without due consideration of, or in contradiction to, the patient’s perception of benefits and harms, the action is termed ‘paternalistic’ (as a father might treat a child), although ‘parentalistic’ might be a more appropriate, less sexist term.

Ideally, the benefits and harms of our interventions are reasonably clear before we proceed. For example, the performance of gastric lavage on a non-consenting patient after a trivial overdose several hours earlier is ethically unjustifiable, as there is insufficient benefit to override the principles of respect for autonomy and non-maleficence. Research is an ethical necessity to provide the evidence of benefit and harm, upon which to base decisions.

Justice, or the concept of fairness, is best addressed by questioning whether there are others who might be adversely affected by a particular action. Usually, it does not offer much to the deliberations when considering interventions for an individual in an emergency, but there are exceptions. For example, in a mass casualty incident, the performance of a hopeless resuscitation might be unjust, in addition to harming the patient, if it deprives another person with a greater chance of survival. Or, if the intoxicated head-injured young man were to leave the ED with car keys in his hand and an intention to drive, then there is a potential injustice to other road users, possibly sufficient to override his intention to leave.

In addition, there might be questions about the cost of life-sustaining and other emergency care in comparison to other care, such as hip replacements or immunizations. Although such considerations of ‘distributive justice’ are important, it is not appropriate for the clinician managing an individual patient to be influenced by such concerns at that time. However, it is very appropriate for clinicians to contribute to debate regarding healthcare funding and policy, but in a meeting room rather than a resuscitation room.

In applying this tool, it is necessary to discuss with the patient the clinical utility (the beneficence and maleficence, benefits and harms, pros and cons) of the therapeutic options and identify the preferred option or options. The patient is allowed the opportunity, as circumstances permit, to deliberate, discuss with others and then express a decision. Urgency and impaired patient competence might limit how much information can be provided to the patient but these barriers should not be used as a reason not to try. Patients should receive the maximum information circumstances allow. In many cases in EDs, the urgency is related to pressures of work rather than real clinical urgency.

Allowing, even encouraging, a discussion with an interchange of questions and answers will enhance the opportunity for the patient to understand what is available. For the patient, the belief that he or she has been able to maintain control, to take time, to say what he or she thinks and to be listened to, is immensely fulfilling. Independent of the clinical outcome, this belief enhances patient satisfaction.

It is inevitable, and appropriate, that clinicians have a preferred option, based on their understanding of the utility of the interventions and their experience of what the average patient in similar circumstances, and the average clinician in similar circumstances, would choose.

The clinicians’ preferred option should not be stated ‘up front’, but may be offered during conversation. The patient might ask what the clinician thinks is best or the clinician may offer it if the patient appears to be struggling to make a decision (‘would you like me to tell you what I think would be best?’).

If the decision the patient has made is concordant with the clinician’s preferred option, then it is appropriate to proceed with that option. If the patient has been given the best chance possible to make a considered, free and informed choice and that choice is the same as the clinicians’ preferred option, then it is reasonable to assume a true autonomous choice has been made and to get on with it. If the decision the patient has made is discordant with the clinician’s preferred option (as might be the case with the elderly lady who refused surgery for her fractured neck of femur), then it is sensible to proceed to the next tool.

Some would argue that accepting a decision because it is concordant with the clinician’s is a thinly veiled parentalism. However, it is unlikely a concordant decision is a wrong one, it is likely that such a decision will lead to ongoing treatment (thereby keeping the options open) and the practicalities of emergency clinicians in an emergency context unravelling the complexity of such a scenario relegate this concern to fine print.

Although a discordant patient choice may well be a true autonomous choice and, therefore, should be honoured, the discordance with the preferred choice is a trigger for a higher degree of scrutiny. The higher degree of scrutiny continues with the next tool.

However, prior to proceeding to that tool it is important to explore (as part of the continuing interaction started above) the reasons for the patient’s decision. There might be ‘cons’ or ‘harms’ of the preferred choice which can be addressed to the patient’s satisfaction, thereby allowing the patient a chance to choose again with a new perception of pros and cons. The clinician should not be coercive in content nor in manner, however, if there are possibilities which would influence the patient’s decision, they should be offered. An interaction such as this is permissive, not coercive; ‘That’s OK and we will respect your decision, but is there any particular reason you are against the operation?’ ‘OK, I see what you mean. Is there anything we can do so that this is less of an issue for you?’

For example, if it transpires that the elderly woman’s main reason for declining surgery for her fractured neck of femur is an intense concept of privacy, with anticipated unbearable embarrassment associated with being in a multibed room, having to use a bed pan and being examined by multiple people, then offering a single room and enforcing a rule of no medical or other students may give her a new balance of pros and cons which changes her decision.

Tool 2: respecting autonomy (Box 25.5.3)

We have arrived at Tool 2, because at Tool 1 the patient’s expressed choice was discordant with the preferred option of the clinicians. The expressed choice of the elderly lady who refuses to consent to surgery is explicit. The expressed choice of the drunk young man taking his own discharge is not articulated as clearly, but his violent and offensive behaviour and his self-initiated discharge represents a ‘discordance’ with the choice of the clinicians.

As part of Tool 1, the reasons for the patient’s decision have been explored (as opportunity allowed) and any possibilities of mitigating the ‘cons’ of the preferred option have been explored and the options reconsidered. The patient’s decision remains discordant.

There are two questions for the clinicians to consider at this point:

If the answer to this question is ‘no’ then the next question is:

If the answer to this question is ‘yes’, then respecting the patient’s autonomy means disregarding the expressed wish of the patient and honouring the truly autonomous wish. It is an important concept that overriding the expressed wishes of a patient (which on the surface appears parentalistic) is done to honour the truly autonomous wishes of the patient (which have not been expressed due to influences undermining autonomy).

To answer the first question (‘is this decision a truly autonomous decision?’), it is necessary to consider the elements of autonomy – information, competence and freedom – by asking three questions. See Table 25.5.3, which describes Tool 2. Respecting Autonomy.

The first component of an autonomous decision is sufficient information to make the decision. A patient is at liberty to decline to be informed and to make a decision based on whatever information they consider sufficient. However, if a lack of information is clearly leading to a decision the patient would not make if sufficiently informed then the decision is non-autonomous.

The second component of an autonomous decision is the ability to deliberate and express a decision. Some refer to this as competence, or decision-making capacity (although both of these terms may have wider definitions). For this chapter, the term competence is used. Is the patient cognitively impaired, thus impairing his or her competence and, if he or she were competent, is it likely he or she would make a different decision? Determining the patient’s competence is challenging and is covered more fully in Chapter 25.3. However, a simple approach is outlined in Tool 3.

Are there coercive influences leading the patient to make a decision he or she would not make if free from the influence? In the ED, the most common coercive influence is suicidal ideation secondary to depression. Occasionally, other influences, from family or friends, may be present. The presumption in the ED is that someone who has attempted suicide has a depressive illness which is reversible and that their true autonomous wish (if the coercive influence of depression were reversed) would be to receive treatment to preserve their life. This presumption is not always correct as some suicides might be considered to be ‘rational,’ ‘autonomous’ decisions (for instance, the patient with advanced incurable neurological disease). Determining that the patient’s choice is free from a reversible coercive influence is very difficult for an emergency department clinician, in the emergency department and in a hurry. In this context, the most senior and qualified assessment should be called upon (the emergency physician or the psychiatrist, for example). However, if unavailable or still uncertain, then it is appropriate to default to the presumption that the patient’s suicidality is reversible and that the truly autonomous wish would be to receive treatment to preserve life. This default keeps options open and allows further specialist assessment of psychiatric illness. As such, it is the lesser of two possible errors.

Tool 3: assessing competence (Box 25.5.4)

Tool 3 comes into play because it is believed that the patient’s discordant decision might not be their truly autonomous one and the reason relates to possible impaired competence.

Tool 4: reassurance about competence (Box 25.5.5)

Competence mostly is about understanding, but there will be supporting information concerning the patient’s capacity to understand, which this tool explores.

Observations regarding the Glasgow coma scale (GCS) and intoxication are important, as they provide ‘hard data’ in the clinical notes (and should be recorded there). However, they are not absolute as they indicate capacity to understand and not actual understanding. A GCS of less than 9 (indicating the patient is not interacting with his or her environment, except non-communicative responses to painful stimuli) will clearly indicate impaired competence as no decision can be made nor expressed. However, a GCS of 14 out of 15 (or even 13 or 12) does not necessarily mean the patient does not understand. The head-injured man who wishes to take his own discharge might be drunk with an initial GCS of 14. This suggests competence might be impaired but does not define incompetence. Incompetence must be proven by a determination that understanding is impaired, by reapplying Tool 3.

Similarly, an early, humane and judicious dose of intravenous morphine for a painful condition (such as for the elderly lady with a fractured neck of femur) does not necessarily render the patient incompetent. If she still indicates understanding then competence should be assumed.

Perseveration is common in mild/moderate head injuries, often manifesting as repeating the same questions over and over (‘Hey doc, what happened to me?’ ‘Why am I here?’ etc.). If new information is not being stored, then competence to make important treatment decisions is unlikely to be present.

If the decision the patient makes is discordant with the preferred option, then we have already challenged his or her understanding: ‘OK, we well respect your decision but can I please, for my own reassurance, ask you a few questions so that I am sure you understand the decision you are making? Can you tell me what you understand about what has happened to you? Can you tell me what you understand about the operation? Can you tell me what you understand about what will happen if you do not have the operation?’ Then, the first part of Tool 4 has asked us to note some potential indicators of impaired capacity to understand. Now, the second part of Tool 4 asks about ‘reason’, as an indicator of the capacity to understand. Reason (I am making this decision because…) is a powerful indicator of a competent decision. The intoxicated head-injured patient might be asked why he wants to leave. He might answer ‘I left my girlfriend at the nightclub with a bloke she fancies. I’m worried about what she’s up to.’

Although we might challenge his reason (and counsel him that, if his girlfriend is cavorting while he is in hospital she’s not the girl for him), he has displayed reason and it is not our place to challenge ‘what makes people tick’ (their context, their values, their world view). Instead, we have the task of ensuring patients are making the right choice for them – their truly autonomous choice. Reason in a decision suggests the choice is a competent one and, consequently, probably an autonomous one.

Tool 5: confirmation the decision is the right one (Boxes 25.5.6 and 25.5.7)

At this stage, one of two possible decisions about the patient’s discordant decision has been made. A final confirmation for each of these decisions follows.

Box 25.5.6 describes Tool 5a. Respecting the patient’s refusal of care. It is important to emphasize that any of these three prove the case. In other words, the presence of any of these three disallows the clinician overriding of the patient’s refusal of care.

Tool 6: stopping resuscitation (Box 25.5.8)

When considering whether to stop a resuscitation, the tools listed above are relevant. But, if the patient is unconscious, there is no expressed indication of his or her autonomous wishes. Respect for autonomy and consent may appear irrelevant, but consent should be obtained for resuscitation, like all other medical interventions.

There is an assumption that resuscitation offers hope of a good outcome (which is true), but does not cause harm (which is false). Resuscitation is often provided with this ‘no harm in trying’ belief, but without due consideration of the harms of resuscitation nor how the patient would percieve the balance of benefits and harms. The benefits of resuscitation include the avoidance of death and the restoration of good health. However, resuscitation can cause unnecessary discomfort, indignity, false hope, a lingering death, financial and opportunity costs and survival with a poor quality of life [3]. If patients undergoing resuscitation were able to consider the potential benefits and harms of the resuscitation intervention recieved in a calm and rational state, just as a patient might when consenting for elective surgery, then it would not be suprising to find a number declining consent.

Consent, in relation to resuscitation, attempts to determine what the patient would want if able to consider the benefits and harms of resuscitation. Informed consent, as is appropriate for elective surgery, might be inappropriate during resuscitation owing to the urgency of the treatment and impaired competence of the patient. However, if informed consent is not relevant, other forms of consent still are [4]. The two most common forms of consent used in resuscitation scenarios, where there is both urgency and impaired patient competence, are presumed consent and proxy consent.

Presumed consent uses the concept that a reasonable patient under similar circumstances – or this patient if he or she were able to – would consent to the resuscitation endeavours proposed. This form of consent has merit and is commonly employed but, occasionally, attracts criticism as being a form of medical parentalism, in that it may be perceived to be respecting the principle of beneficence, as the resuscitators perceive it rather than as the patient would perceive it.

Proxy consent involves obtaining consent for resuscitation from a family member or other person, who is perceived to be able to speak on behalf of the patient. Proxy consent avoids the criticism of medical parentalism as the decision is taken out of the physician’s hands, but it suffers as a model as the decision maker may be unable adequately to receive information, understand it and deliberate during a hurried and rapidly evolving resuscitation.

In addition, the proxy might not reflect the views of the patient. There might be occasional circumstances where the proxy declines resuscitation because of some financial or other benefit that would accrue from the patient’s death. More commonly, proxies have a tendency to demand more resuscitation than the patient would have wanted [5,6].

A modification of proxy consent that better addresses the issue of respect for patient autonomy is proxy consent with substituted judgement. This involves not asking what the proxy would want done for the patient, but instead what the proxy thinks the patient would want done. In other words, it attempts to see the resuscitation from the patient’s perspective, as the proxy understands it.

Similarly, a modification to presumed consent is presumed consent with professional substituted judgement [7]. In this model, the resuscitators gather as much information about the patient as they possibly can to attempt to understand how the patient would view this decision. This usually involves speaking with the patient’s loved ones. Then, with some knowledge of the likely outcome of the resuscitation proposed, based on previous experience and a knowledge of the medical literature, they can exercise their moral imagination by asking ‘If I could pause the resuscitation, sit the patient up, talk to him and ask if he wants this resuscitation, what would he say?’ In this way, the patient’s autonomy is respected as best it can be under difficult circumstances, by combining a knowledge of the harms and benefits of the resuscitation with an appreciation of this balance from the patient’s perspective, as best the resuscitators can appreciate it.

For example, in a cardiac arrest, the patient’s primary care doctor might relay details of the conversation he had with the patient during which the patient expressed a desire not to be resuscitated from cardiac arrest. With that information known, asking the question above would bring a clear ‘No, I do not want this resuscitation’. With that response, the resuscitators have an obligation to stop.

The resuscitation should not proceed if presumed consent using professional substituted judgement is employed and the answer to the question is ‘No’. To resuscitate without regard for the patient’s explicit or perceived wishes is a harmful disrespect for his or her autonomy.

Often, and appropriately, a decision to proceed will be made on the basis of a perceived balance of benefit over harm and an uncertainty about what this patient would want. In this case, a ‘trial of treatment’ keeps options open (by keeping the patient alive) and it allows time to gather a clearer view of the likely benefits and harms of resuscitation (as the patient responds or not to the resuscitation) and the likely desires of the patient (as information about the patient comes from relatives or others). The question is asked again, (‘If I could pause the resuscitation, sit the patient up, talk to him and ask if he wants this resuscitation, what would he say?’), until a clear ‘Yes’ or ‘No’ is apparent.

The resuscitators should recognize when the balance of benefit and harm becomes unfavourable from the patient’s perspective, by employing professional substituted judgement. When it is clear that the patient would say ‘No’ to ongoing resuscitation, the resuscitators have a moral obligation to withdraw resuscitation as they can no longer presume the patient’s consent.

The consent model used in resuscitation (proxy or presumed, with or without substituted judgement) will be influenced by the moral dimensions above (especially individualism versus collectivism) and by the legal jurisdiction in which the decision is being made (some may favour a stronger role of proxies in decision making). The law, like ethics, has the objective of ensuring the right things are done for the patient. Presumed consent using professional substituted judgement aims to achieve this, but clinicians should ensure the model they use is consistent with local law.