Death and Organ Donation Statement

This App is designed to provide bedside support to ICU, ED and OR doctors and nurses involved in the care of potential and actual organ and tissue donors in Australia and New Zealand. The content is based on the content of ANZICS website version of the ANZICS Statement on Death and Organ Donation Edition 4, 2019. The website version (link here) is maintained and updated as required and always supercedes any previously printed version.

Please note that this abridged version for the App does not cover the nuanced detail and discussion that can be found in the equivalent numbered sections on the ANZICS website version of the Statement.

The App commences with the 29 ANZICS recommendations followed by guidance on:

• neurological and circulatory determination of death (known as “brain death” and “circulatory death”)
• organ and tissue donation: the legal framework and the processes involved in adults and children
• the provision of patient and family-centred care in the context of organ donation
• responsibilities of ICU and ED staff in supporting best practice in organ and tissue donation

The table below lists the recommendations developed by the ANZICS Death and Organ Donation Committee based on review of the law, medical literature and Committee consensus. The table also notes the section where the evidence or context for each recommendation is discussed.

1.1.1       Death

Death is inseparable from organ and tissue donation. With the exception of living donation by a consenting adult, the inviolable requirement for organ donation is that the organ donor is deceased. The ethical considerations of death and the evolution in the biological understanding of death are covered in detail in Sections 1.1.1 – 1.1.3 of the Statement.

1.1.4    Death from a legal perspective

There are strict legal requirements in Australia and New Zealand (NZ) to determine that a person is deceased.

In New Zealand

Although, in 1972, a NZ High Court judge submitted that doctors should endeavour to agree among themselves on the criteria by which death can be determined, New Zealand has no legal definition of death. The NZ Human Tissue Act 2008, which does not define death (except in the case of a foetus) uses the words [the doctor is] ‘satisfied… that the individual concerned is dead’.

In Australia

All Australian jurisdictions, based on the 1977 Australian Law Reform Commission (ALRC) recommendation, legally define death as:

• irreversible cessation of all function of the brain of the person; or
• irreversible cessation of circulation of blood in the body of the person.

The ALRC specified that, although the definition appears in the context of transplantation, the definition should have general application to the determination of death. The following provides guidance on the neurological determination of death (also known as “Brain Death”) and the circulatory determination of death (also known as “Circulatory Death”).

1.1.5    The legal processes for determination of death in Australia and New Zealand

Neurological determination of death

Although the Australian and NZ laws do not stipulate how death is to be determined, legislation in all jurisdictions except NZ requires that, for the purposes of tissue donation from patients whose death is defined by ‘irreversible cessation of all function of the brain’, the determination of death be carried out by two medical practitioners who have sufficient qualifications and experience and who have made the determination based on clinical examination. The ‘sufficient qualifications and experience’ stipulated for each jurisdiction are outlined in Table 1.1.

Although it is not a legal requirement that two medical practitioners determine death when tissue (including organ) donation is not being considered, ANZICS recommends that the same standard for neurological determination of death is followed, whether donation is being considered or not. When death by neurological criteria has been (apparently) determined by one doctor only, it does not meet the ANZICS standard. [Recommendation 1]

The requirements for neurological determination of death commence in section 1.2.

Circulatory determination of death

The legislation throughout Australian and NZ stipulates that tissues can only be removed after a person has died. Victorian legislation has the additional provision that when respiration or blood circulation is not being maintained by artificial means, before tissue is removed, a medical practitioner (not the designated officer) must certify that an examination has been carried out and the person has died (within the meaning of the definition of death in the Act).

The requirements for circulatory determination of death commence in section 1.3.

Neurological determination of death should always be determined whenever it has occurred regardless of whether donation is being considered. It provides certainty to the patient’s family that s/he is dead, irrespective of organ donation and can be conducted without undue intrusion or distress for the family. The criteria are not altered by the consideration of organ donation.

The process of neurological determination of death is conducted in the following order:

a) Confirmation of brain pathology sufficient to cause its death

b) Preconditions for clinical determination are met (section 1.2.1)

c) Observation and waiting periods have been met (section 1.2.2)

d) Clinical examination by two doctors confirms irreversible cessation of function of the brain (sections 1.2.2, 1.2.3 and 1.2.4)

e) If b), c) and d) cannot be met then a brain perfusion study is required to confirm absence of brain perfusion (section 1.2.5)

Confirmation of brain pathology sufficient to cause its death

Neurological determination of death cannot be conducted without clinical or neuroimaging evidence of sufficient intracranial pathology. Cases have been reported in which the brainstem has been the primary site of injury and death of the brainstem has occurred without death of the cerebral hemispheres. Thus death cannot be determined through clinical examination alone when the condition causing coma and loss of all brainstem function has affected only the brainstem and there might still be cerebral blood flow to, and function of, the supratentorial part of the brain.

In cases of hypoxic-ischaemic encephalopathy (HIE) the cause of the precipitating event is often obvious from the clinical history (e.g. cardiorespiratory arrest from asthma, drowning, hanging or other form of asphyxia; drug overdose, or a cardiac event). In these situations, neuroimaging is not required. In circumstances where the underlying cause is not evident (e.g. unexplained cardiac arrest or collapse) neuroimaging should be performed in case this is an otherwise clinically silent neurologic event (e.g. intracranial haemorrhage, acute hydrocephalus). If the neuroimaging shows an alternative intracranial pathology sufficient to cause brain death, then the cause is no longer HIE and a 24-hour waiting period will not be required prior to determination of death (see Section 1.2.2).

[Recommendation 2]

1.2.1 Preconditions for clinical determination

1.2.2 Clinical examination

1.2.3 Observations that are compatible with permanent loss of brain function

1.2.4 Observations that are incompatible with permanent loss of brain function

1.2.5 Demonstrating the absence of brain perfusion

1.2.6 Neurological determination of death in children

1.2.7 Documentation of neurological determination of death

1.3.1        Criteria for circulatory determination of death

As stated in 1.1, the legal definition of death in all Australian jurisdictions is either ‘irreversible cessation of all function of the brain of the person’ or the ‘irreversible cessation of circulation of blood in the body of the person’. Almost all determinations of death, whether in hospitals or in the community, are by confirmation that the person is unresponsive, not breathing, is not moving and has no pulse. This is circulatory determination of death.

Duration of circulatory arrest to satisfy determination of death

Death cannot be determined until there is certainty regarding the permanence of the circulatory arrest. Permanence means that circulation ‘will not resume spontaneously and will not be restored through intervention’. Certainty is assured when the duration of cessation of circulation has extended beyond the possibility of spontaneous resumption of cardiac contraction causing antegrade circulation, known as autoresuscitation.

A Queensland audit, published in 2018, showed 2 of 176 had autoresuscitation between 2 and 3 minutes. A prospective observational study, published in 2021, of 631 adults in 20 ICUs who died following withdrawal of cardiorespiratory support revealed a spontaneous resumption of cardiac activity after a period of pulselessness in 14% of patients, with the longest duration before resumption of 4 minutes 20 seconds. Consequently ANZICS, concluded that the circulatory determination of death requires absence of circulation for 5 minutes. It is not necessary, or desirable, to extend the period of observation beyond 5 minutes of circulatory arrest.

In the context of donation after circulatory determination of death, it is important to determine death as soon as possible to minimise warm ischaemia of the organs to be retrieved. For this reason, no more than 5 minutes of circulatory arrest is recommended.

This timeframe for circulatory determination of death only applies in the context of withdrawal of cardiorespiratory support, where there is a subsequent monitored circulatory arrest or where there is no intention to restore or re-establish cardiorespiratory function. It does not apply following cardiopulmonary resuscitative attempts or where it is reasonable to provide such interventions. After failed resuscitation, there are reports of spontaneous resumption of the circulation up to 10 minutes post cessation of cardiopulmonary resuscitation, which is thought to result from cardiopulmonary interactions such as dynamic hyperinflation from mechanical ventilation.

In the context of donation after circulatory death, once circulatory arrest has occurred, interventions that may inadvertently restore circulation must not be undertaken. This includes cardiac compressions and ventilation. After determination of death, however, reintubation without ventilation to prevent aspiration into lungs intended for donation, is necessary and permissible.

Method of circulatory determination of death

The usual manner of determining death is to confirm that the patient is unresponsive, is not breathing, has no pulse or heart sounds and, for some doctors, that the patient’s pupils are fixed and dilated. In the context of donation after circulatory death, due to the requirement to detect the exact onset of cessation of circulation and due to the presence of family during this period of observation, the monitoring of the patient is different.

Although there are some international variations in the circulatory determination of death,¹⁸ there is general consensus that coma and sustained absence of palpable pulse, heart sounds, breath sounds and chest wall movement are necessary criteria. Electrical asystole is not required for this determination as electrical activity may continue for minutes after cessation of circulation.

Arterial line monitoring is the recommended method to determine the loss of pulsatile arterial blood pressure in the context of donation. Absent pulse on the arterial line for 5 minutes is observed and then confirmed by clinical examination (absent heart sounds and/or absent central pulse). Reliance on an isoelectric ECG may unnecessarily prolong the observation period so the ECG should not be monitored if an arterial line is present.

In the 2021 observational study 7% of the patients had ECG activity for greater than 30 minutes post cessation of a pulsatile arterial blood pressure.

When the use of an arterial line is unacceptable to the patient or family or is not technically possible, electrical asystole must be observed for 5 minutes on the ECG. Absent circulation is then confirmed by clinical examination (absent heart sounds and/or absent central pulse).

[Recommendation 12]

1.3.2           Documentation of circulatory determination of death in the context of organ donation

If organ donation is to take place, it is important that only one clock be used to time events, to ensure consistency in time keeping throughout the process. This will allow accurate and consistent recording of time on all documentation (including time of death, warm ischaemic time) and ensure that operating theatre documentation does not inadvertently record organ removal as having begun before the time of determination of death.

The doctor responsible for determining death should document the time and date of determination of death. The recommended form for the documentation of circulatory determination of death is included as Appendix 1

[Recommendation 13]

Organ and Tissue Donation After Death

The ANZICS Statement on Death and Organ Donation provides a standard for donation of organs and tissues after death based on good medical practice, ethics and the law.

Australian and New Zealand practice relies on donation of organs and tissues being an unconditional altruistic, non-commercial act and that donated organs are allocated to the most suitable recipients on the transplant waiting list.

The ethical principles and legal requirements are covered in detail in the Statement (section 2.1), including the issue of family desire to direct donation, donation from a cultural perspective and legal requirements in each jurisdiction. The following points are highlighted for practical purposes:

1. Any consideration of directed donation must adhere to strict Australian NHMRC or ODNZ requirements
2. The best approach to organ donation in indigenous and multicultural populations is one of cultural humility. Resources include the ANZICS Statement on care and decision-making at the end of life for the critically ill and those provided by the Australian Organ and Tissue Authority (AOTA) and ODNZ
3. In each hospital the person delegated with the responsibility to authorise the removal of organs and tissues from a deceased person is known as the ‘designated officer’ in Australia and as ‘the person lawfully in possession of the body’ in New Zealand
4. In Australia, legislation states that the designated officer may authorise removal of tissue if, after reasonable enquiries, the deceased patient did not object and next-of-kin do not object. Authorisation to remove organs can also occur if the family cannot be located and the wishes of the deceased patient are unknown and there is no reason to believe that he or she would object
5. The staff at AOTA and the state/territory-based organ donation agencies can provide all advice regarding donation requirements.
6. The legal requirements for each jurisdiction can be sourced in Table 2.1 below

[Recommendations 14-16]

2.2.1         Patient characteristics and donation potential

The medically suitability of patients to donate organs or tissues hinges on the potential risks and benefits for the recipients. Criteria for donor suitability are always changing and, for this reason, the possibility of donation should routinely be considered in all patients as part of their end-of-life care and should be discussed with donation staff (who may further liaise with transplant teams) to determine if donation is medically possible.

There are very few absolute contraindications to donation proceeding.

• metastatic and haematological malignancies are excluded
• a history of cancer should not be ruled out- many suitable donors have localised cancers, or have had a long disease-free interval since treatment, including childhood leukaemia and lymphoma
• treated bacterial infection (including meningococcal infection), infection with hepatitis B or C virus, or risk factors for human immunodeficiency virus (HIV) and viral hepatitis may also be suitable organ donors.
• past or treated hepatitis C infection are increasingly considered for donation to non-infected recipients and the recent availability of effective direct-acting antiviral therapies may further broaden medical acceptability to those donors with active viraemia.
• Overseas cases of HIV positive liver and kidney donation to HIV positive recipients
• Other acute organ dysfunction, such as acute kidney injury in a patient with previously normal kidney function, is not a contraindication to donation. H
• A history of hypertension, diabetes mellitus, smoking, asthma do not necessarily preclude organ donation, nor does older age (persons in their late seventies or early eighties may be suitable kidney and/or liver donors).
• Criteria for tissue-only donation differ from those for organ donation (see Section 2.6).

2.2.2        When is donation after neurological determination of death a consideration?

This can only occur in a patient who is mechanically ventilated and physiologically supported in the context of severe brain injury.

• The term neurological determination of death is used in preference to the term brain death because it avoids the implicationthat there are two different types of death, and is consistent with the more contemporary idea that there is only one “death” but two different ways of determining it. The use of the term brain death is likely to persist (including in this document) because it is short and convenient.

2.2.3           When is donation after circulatory determination of death a consideration?

Donation after circulatory determination of death (DCDD) should be considered for a ventilated patient from whom treatment is to be withdrawn and in whom death is likely to occur within a short enough time frame to permit organ retrieval and successful transplantation. Only ‘Controlled DCDD’ occurs in Australia (Maastricht category 3 and 4- see Table 2.2 in the ANZICS Statement)

Category 3 is the most likely setting for DCDD. Persons in this category include patients from whom active treatment is being withdrawn as it is no longer in their best interests. Conditions that lead to death in these patients include severe brain injuries (traumatic, cerebrovascular or hypoxic), but also non-neurological causes, such as respiratory, liver or severe cardiac failure, or ventilator-dependent quadriplegia) where there is little or no possibility of deterioration to brain death. Category 4 includes persons with unexpected or expected cardiac arrest following neurological determination of death. An emergency Category 4 retrieval is realistic in cases where the family has already consented to donation and logistic factors are favourable.

DNDD generally allows for more organs to be donated for transplantation than DCDD, and without the additional warm organ ischaemia of DCDD.

2.3.1        Physiological support in brain death (BD)

The transition to loss of brain perfusion, with consequent BD, is, at times, referred to as “coning”. This may be preceded by a Cushing’s response due to the rising ICP.

While there is clinical variability, a crescendo sympathetic autonomic response (‘autonomic storm’) often occurs at this time. Transient hypertension with vasoconstriction, tachyarrhythmia and less often, tachypnoea, seizures, sweating and pupillary dilation, is followed by collapse of autonomic and reflex brainstem activity including respiratory drive. Apnoea, loss of regulation of cardiac rate and vascular tone with hypotension, loss of temperature regulation, and diabetes insipidus follow. Not all patients exhibit these classic features. On rare occasions, brain death can occur without any instability and is only recognised when the clinical examination is performed.

Early identification and treatment of the physiological changes associated with BD increase the likelihood of physiological stability of potential donors and maintains organ function. Potential donors, like other critically ill patients, should receive the same excellent critical care management, attending to the effects of brain death and any underlying conditions including the use of central venous and arterial access. Appendix 3 provides a checklist and physiological goals for potential.

Where physiological instability persists despite treatment, expert advice should be sought from a medical donation specialist via the donor coordinator.

[Recommendations 17]

Cardiovascular effects and support

Respiratory effects and support

Diabetes insipidus (DI) and fluid therapy

Hormonal treatment

Hypothermia

General care and nutrition

2.3.2           Physiological support during organ retrieval surgery

During the organ retrieval surgery, the donor’s physiology is managed by an anaesthetist. The anaesthetist should ensure that there is adequate monitoring and intravenous access. Blood products should be available, if required, and normal ventilatory and circulatory parameters maintained. It is usual to administer a neuromuscular blocking medication and volatile anaesthetic agent. These agents serve to prevent spinal reflex movements and ablate sympathetic responses such as tachycardia and hypertension that may occur during organ retrieval surgery.

Opioid agents are also sometimes used for this purpose although they may not be useful in suppressing catecholamine-mediated sympathetic activity. This is not anaesthesia, as anaesthesia is not required in individuals who are dead. These agents are used to prevent reflex movements and sympathetic responses to noxious stimuli that can be disconcerting for operating theatre staff. In addition, excessive sympathetic responses could result in myocardial injury and exacerbate bleeding, with subsequent haemodynamic instability and detrimental effects on graft function. Whether agents that more directly block the effects of sympathetic activity (e.g. beta-blockers and vasodilators) have advantages over a combination of volatile agent and high-dose opioid remains untested.

Transplant units all routinely request methylprednisolone 15 mg/kg in the OR.

DCDD has progressively increased in the last decade in both Australia and New Zealand.

DNDD, however, generally enables a greater number of organs to be retrieved and, in some circumstances, somewhat better recipient outcomes. If end-of-life decision-making is occurring and loss of brain function might occur in the near future, the option to continue to wait (e.g. for 12–24 hours before another review) rather than withdraw treatment should be discussed with the patient’s family. This discussion should include an explanation of the differences in recipient outcomes that might occur under DNDD and DCDD conditions. If a decision is made to wait, there should be a further family discussion after the agreed waiting period, at which the clinical circumstances should be reviewed.

2.4.1     Principles underpinning donation after circulatory determination of death

2.4.2     Graft and recipient survival

2.4.3     Warm ischaemic injury

2.4.4     Prediction of circulatory arrest

2.4.5     Agreement to proceed to organ donation

2.4.6     Proceeding to organ donation

The principles for paediatric donation are essentially the same as those for adults, however some differences exist. Experience in Australia and New Zealand, and internationally is smaller than for adults primarily due to the low paediatric mortality rate. In Australia and New Zealand since 2000, the rate of donation in children has been 5.9% of intensive care deaths compared to 1.2% for infants younger than 2 years old. The paediatric donation rate, however, is similar to the adult rate as a percentage of ICU deaths. Neonatal and infant donation is more challenging and less common. Approximately 40% of paediatric intensive care deaths occur in children under 1 year old. In this population, particularly those in the first 6 months of life, feasibility of donation can be limited by infrequency of determination of brain death and medical suitability, but primarily due to technical aspects of organ retrieval and transplantation.

As in adults, DCDD is becoming an increasingly frequent mode of donation in children. The potential for DCDD has been reported as between 9 and 20% of paediatric ICU deaths with wide regional variation. Internationally, practice guidelines exist and international collaborations to describe jurisdictional patterns of DCDD are being developed. In Australia and New Zealand, DCDD in children increased from 0.7% to 17% of all donations between 2000 and 2017.

Currently, in Australia and New Zealand, the lower age limit criteria for transplantation of some organs such as the kidneys, pancreas and lungs, may preclude the consideration of infant and neonatal donation. However, there are no lower donor age criteria for the heart or liver.

Specific ethical considerations in paediatric organ donation primarily relate to the ability of children to make decisions regarding their wishes and best interests and the role of parents as surrogate decision makers. In the UK and US, position statements support a family-centred approach whereby parents are appropriately placed to make decisions on behalf of their child for procedures relating to donation. In Australia, adolescents aged 16 and 17 may register intent to donate on the Australian Organ Donor Register (AODR).

2.5.1           Neonatal donation

Neonatal donation is rare in Australia and New Zealand, however its feasibility is increasingly being considered. The rare occurrence of brain death in neonates and the technical limitations and complications of transplantation are the main barriers. Nevertheless, neonatal donation does occur and broader experience exists in the US compared to Europe and Canada. Other considerations for neonatal and infant donation at the lower extremes of age include logistic and resource allocation. Neonates who die in perinatal centres where paediatric surgical services may not exist, will require mobilisation of specialist anaesthetic, surgical and theatre staff. The necessary blood tests required prior to donation also present challenges.

Over the past decade, a number of retrospective studies have described some potential for neonatal donation. These indicate that, in tertiary level neonatal ICUs, brain death is rare and that donation may be possible in anywhere between 8 and 36% of all neonatal deaths if potential for DCDD is included. Neonatal death following treatment withdrawal occurred within a timeframe permissible for donation. Recently, cases in the UK of ‘en bloc’ kidney donation from a neonate and the donation of kidneys from a 7-week-old infant have been reported.

Outcomes of kidney transplantation from infant donors suggest equivalent graft and overall survival to older donors despite a lower utilisation rate. However, the international literature regarding outcomes are based on small series as well as donor populations beyond neonatal age and size and thus interpretation warrants caution. For neonatal organ donation to eventuate in Australia and New Zealand, collaboration between paediatric intensive care physicians, neonatologists, donation staff and TSANZ is desirable.

Children born with anencephaly are unlikely to satisfy the preconditions for determining brain death at birth due to intact brainstem function and death determined by circulatory criteria is unpredictable. For these reasons, organ donation cannot be considered in this group in Australia and New Zealand at present.

There are more opportunities for tissue donation than for organs because tissues can be retrieved up to 24 hours after cessation of circulation. Many families appreciate the opportunity to donate their family member’s tissues, including when organ donation is not possible. For many families donation of any type is of value, whether it be tissues or organs. It is therefore important that, when a patient dies in the hospital (whether in the ICU, emergency department or hospital ward), the possibility of tissue-only donation is considered and offered to families.

Tissues that can be donated include:

• cornea and sclera (usually the whole eye is removed)
• skin (split thickness from back, anterior and posterior thigh and posterior calf)
• heart valves (aortic and pulmonary valves)
• other cardiovascular tissues including pericardium, ascending or descending aorta, saphenous veins
• bone: may include hip (iliac crest), long leg bones (femur, tibia), patella and humerus
• other musculoskeletal tissue including tendon (may include achilles, patella, anterior and posterior tibialis, semitendinosus, quadriceps, peroneus longus and extensor hallicus longus; note that these are often retrieved with subjacent bone to aid the subsequent attachment surgery) and cartilage (knee meniscus).

In Australia, the safety and quality of tissue donation is regulated by the Therapeutic Goods Administration (TGA). In New Zealand, similar regulation is under development; in the meantime, the various tissue banks follow their own policies and procedures based on the Human Tissue Act 2008. Information on the general and tissue-specific contraindications to tissue donation is available from donation staff or directly from the tissue banks to which donated tissues will be referred. Coronial referral does not exclude tissue donation. In WA, a full post-mortem examination is required for musculoskeletal tissue donation.

Intensive care staff should contact and work with donation staff to minimise the number of separate contacts made with the families of recently deceased patients. In some jurisdictions, automatic notification of death occurs electronically to either the donation staff or the tissue banks. It is, therefore, imperative that any discussion with the family regarding tissue donation is documented in the medical record.

Early notification of a possible tissue donation to donation staff or to the tissue bank (according to local practice), enables earlier suitability assessment, provision of informed consent and the collection of blood specimens required for the exclusion of transmissible infections. Ante-mortem blood samples are preferred and, if available, should be provided to the donation staff or tissue bank.

The retrieval of any donated tissue is performed with care and respect. Utmost consideration is given to the donor’s appearance following donation; for example, a prosthesis is used to replace a removed eye or long bone, to restore normal bodily appearance.

[Recommendation 18]

Patient and family-centred care

Sensitive communication is important in intensive care practice. The perceptions, thoughts and feelings of others are shaped by the language used, which should be considered carefully. In discussions with the family, ambiguous or insensitive phrases strongly affect a family’s perception of the health professionals caring for the patient.

It is important to develop your own natural individual style, using sensitive language that is ‘plain’ and avoids technical or insensitive terms.

The timing of conversations is also important. Families should be given adequate time to understand the situation, with information provided over a period of time.

This chapter outlines important concepts in providing patient and family centred care, including:

• family meetings in the context of end-of-life care (see Section 1)
• discussing organ and tissue donation (see Section 2)
• ongoing support of the family after donation (see Section 3)
• maintaining confidentiality about donors and recipients (see Section 4)
• cultural humility in discussing death and organ donation, including specific considerations for Aboriginal and Torres Strait Islander peoples, Māori and other cultural and religious groups in Australia and New Zealand (see Section 5).

Family meetings help to establish a relationship of mutual respect and trust between an ICU patient’s family and the treating team and allow for a shared decision-making approach. It is important to hold an initial meeting early in a patient’s ICU admission and to have regular subsequent meetings to provide updates and to answer any questions as they arise and modify treatment plans as required. An intensive care doctor with appropriate expertise should lead or supervise each meeting.

A planning meeting should occur prior to conducting the family meeting, in which treating specialists from outside the ICU, ICU medical and nursing staff and any other relevant staff discuss the patient to ensure a consistent approach and that an agreed medical opinion is presented to the family (planning the conversation- see Section 4.3.2).

The family (as defined by family members*) should meet with the treating intensivist, and the ICU bedside nurse. Sometimes a chaplain, social worker, cultural health worker and/or other support person will attend if the family wishes. Meetings should occur away from the bedside, in a separate room large enough to accommodate everyone involved, and should be private and protected from interruption. If the patient has decision-making capacity, meetings should be held at the bedside in order to include the patient.

In family meetings, the intensivist should demonstrate respect and compassion by:

• using everyday language
• ensuring that discussion is unhurried
• encouraging families and/or the patient to speak and listening attentively to them
• allowing for silence
• presenting accurate information in a manner that the family and/or the patient can understand
• answering all questions truthfully and fully

Allowing for silence supports active listening, gives families time to absorb complex and confronting information and gather their thoughts, encourages family members to ask questions that are difficult or to raise areas of uncertainty and acknowledges the gravity of the situation and the importance of the information.

* ‘family’ means those closest to the person in knowledge, care and affection, including the immediate biological family; the family of acquisition (related by marriage or contract); and the family of choice and friends (not related biologically or by marriage or contract).

3.1.1       The language of end-of-life care

3.1.2       Content of family meetings

Organ and tissue donation occurs at a time of grief and distress for the family. All staff involved in the care of the patient and the donation process must be sensitive to the patient and to the family’s emotional, psychological, spiritual, cultural and religious needs.

3.2.1           The language of organ and tissue donation

3.2.2           Timing of discussions

3.2.3           The family donation conversation

3.2.4           Considering information about known patient wishes regarding donation

3.2.5           Record of discussions

The family of any patient dying in the ICU should be supported to spend time with the patient before and after death if they wish. In the setting of DCDD, there is minimal time between death and the commencement of donation surgery. When donation occurs after brain death, the circulation is present when the family last see the patient prior to surgery. Families may benefit from the option of spending time with the deceased family member after donation surgery.

If the family is required to officially identify the patient after death for coronial purposes, this should ideally occur while the deceased patient is still in ICU before organ and tissue retrieval. This avoids the family being asked to do this later in the mortuary.

Ongoing support of the family may be provided by ICU doctors and nurses, donation staff, a social worker, religious or cultural leader, family doctor, or counsellor. Donation staff may also be able to help families to create mementos if they wish, such as handprints, footprints or a lock of hair as a keepsake.

It is appropriate that families are offered follow-up, including the opportunity to meet with the treating team to answer remaining questions or deal with unresolved issues.²³¹ This follow-up can assist with evaluating what aspects of their care can be improved and better understand what assisted them in their donation decision. This is also an opportunity to assist with practical issues resulting from the bereavement. It is generally highly appreciated by the family.

Donation staff who were with the family in the hospital will usually phone the donor family within 24–36 hours of the donation to provide information about the outcome of the donation and transplantation and, most importantly, to acknowledge the generosity of the decision to donate. This phone call enables enquiry about the family’s need to access immediate support and to reassure the family that ongoing support is available. Donor families usually receive follow-up contact from the donation agency approximately 2 weeks after their family member has died.

[Recommendation 21]

The Australian Human Tissue Acts and the Privacy Act 1988 (Cwth) stipulate that it is an offence to disclose information concerning the deceased, the use of retrieved organs and tissues and information about recipients.

The New Zealand Health Information Privacy Code 1994 stipulates that ‘the Health Agency must not disclose the information unless the disclosure is one of the purposes in connection with which the information was obtained’.

The Australian Acts and New Zealand code do not prevent families and others from disclosing or actively seeking information in order to identify donors or recipients.

Any information provided to families to acknowledge the gift of the donor family should not be of sufficient detail for recipients to be identified.

[Recommendation 22]

Australia and New Zealand are multicultural societies and intensivists commonly care for dying patients from cultural and religious backgrounds different to their own. Intensivists should be adept in cross-cultural communication and respectfully ask the family and/or their nominated religious or cultural leader if there are any customary practices at the end of life. The most important principle is not to make assumptions regarding their beliefs or perspectives and to approach the discussion with cultural humility (see Glossary).

While intensivists should be familiar with key practices of cultural groups commonly represented in their own unit, there are diverse beliefs within cultural groups. Therefore, it is crucial to listen attentively to the particular wishes of the patient and their family. Wherever possible, offer a translator and/or involvement of a cultural leader when discussing death and end-of-life care with families who do not speak English or speak it as a second language. The translator may also assist with cross-cultural communication.

3.5.1           Specific considerations for Aboriginal and Torres Strait Islander peoples

3.5.2           Specific considerations for Māori

3.5.3           Specific considerations for people of different faiths

Chapter 3 outlined approaches to providing patient and family-centred care. This chapter discusses other important aspects of the organ donation process, consistent with the elements outlined in the AOTA best practice guidelines for discussing and offering organ donation and including:

• educational requirements (see Section 4.1)
• care of the dying patient and his or her family (see Section 4.2)
• recognising the potential for donation, including timely liaison with donation staff (see Section 4.3.1)
• communicating prognosis to the family (see Section 4.3.1)
• in Australia, consulting the AODR (see Section 4.3.3)
• planning the family donation conversation (see Section 4.3.2)
• discussing organ donation with the family (see Section 4.3.2)
• in Australia, team review (see the AOTA best practice guidelines)
• seeking or providing support for health professionals involved in the organ donation process (see Section 4.3.7)

The College of Intensive Care Medicine of Australia and New Zealand (CICM) is the body responsible for the training of intensive care specialists in Australia and New Zealand. This includes theoretical knowledge and practical skills required for the provision of end-of-life care. It is in this context, that organ and tissue donation after death occurs. The College supports an online learning module, workplace-based assessment and communication skills training through the Core Family Donation Conversation (cFDC) Workshop or equivalent.

The cFDC Workshop is delivered across Australia and New Zealand and is facilitated by skilled trainers including experienced intensivists, donation staff and bereavement specialists. The course is convened by the AOTA and is supported by ANZICS.

The 2-day cFDC workshop provides knowledge, understanding and skills in having conversations with families of patients who may become donors. The Practical FDC workshop is designed to consolidate practice learnings and attendance is ideally 6–12 months after the cFDC and is conducted over a single day.

The workshop aims to improve the care of families who are considering donation and enable a considered and informed decision on organ donation to be reached. Intensivists are encouraged to critically consider the course content and reflect on improvements to their own practice to provide quality care for patients and their families.

[Recommendation 23]

The primary aim of ICU staff is to facilitate the recovery of a critically ill patient with the hope that they will resume a good quality of life. At the time a critically ill patient is admitted to ICU there is usually uncertainty about the likely outcome. In some cases, it becomes clear that ongoing active medical treatment will not be able to return the patient to a quality of life acceptable to them. At this point, maintaining physiological support provides the opportunity to explain the prognosis to the family and to preserve the possibility of organ donation.

The decision to discontinue treatment should be made in accordance with the principles set out in the ANZICS Statement on care and decision making at the end of life. This decision is independent of any consideration of donation. In addition, there should be separation between the roles of the medical team involved in caring for the donor and their family and the medical team involved in retrieving organs and tissues.

4.3.1           Identification of the potential for donation to occur

4.3.2           Planning the family donation conversation

4.3.3           Recorded donation wishes

4.3.4           Donor information required by the donation staff

4.3.5           Donor suitability

4.3.6           Referrals from outside the ICU

4.3.7           Organ and tissue donation and the coroner

Distress is a natural and not uncommon response to death and to the grief of others. The processes and delays associated with facilitating organ and tissue donation can also be distressing for staff as well as families.

The degree of distress will vary from person to person and depend on the specific circumstances. Ongoing peer support is important, and hospitals have an obligation to ensure that this support is provided. Support might, for example, take the form of an informal or formal debriefing for those wishing to attend. At times, professional counselling may be required. Specialist donation staff may also provide or facilitate case reviews for hospital staff.

[Recommendation 29]

Appendix 1: Sample documentation for neurological determination of death

Appendix 2: Sample documentation for circulatory determination of death (in the context of organ donation)

Appendix 3: Clinical and physiological support of a patient after neurological determination of death

A/Prof William Silvester        Chair

Dr Rob Bevan                         College of Intensive Care Medicine

Dr Jorge Brieva                       New South Wales

A/Prof David Cook                 Queensland

Dr Rohit D’Costa                    Victoria

Prof Geoffrey Dobb               Western Australia

Dr Ben Gelbart                       Paediatric

Dr James Judson                    New Zealand (Auckland)

Dr Stewart Moodie                South Australia

Dr Helen Opdam                    Australian Organ and Tissue Authority

Dr Jo Ritchie                           Organ Donation New Zealand