Psychotropic Medicines in Cognitive Disability or Impairment Clinical Care Standard

Consider the individual preferences, needs and values of the person with cognitive disability or impairment and use this information to guide the health care provided.

Be aware of the person’s inherent rights according to the United Nations Convention on the Rights of Persons with Disabilities to be included in discussions, express their wishes, and be supported to make their own decisions about their health care.

Healthcare providers should assume that people with cognitive disability or impairment can participate in discussions and decisions about their care. Apply principles outlined in guidelines and in accordance with regulations and legislative frameworks to assess a person’s capacity to be involved in decisions, so as to not assume a person with cognitive disability or impairment is incapable of being involved. If necessary, make a referral to services that can undertake an assessment of capacity.

Involve the person in all discussions and care decisions that they are able to make and to the extent that they choose. Communicate with respect in a way that avoids stigmatising the person for their disability and maintains their dignity. As best as possible, determine the person’s communication needs and types of assistance they may need to support their participation. Plan for and provide the necessary support, and make reasonable adjustments to enable the person’s participation in decision‑making to the greatest extent they are able.

Support effective communication by tailoring and providing information to match the person’s health literacy, medicines literacy and communication needs, and allow sufficient time for discussions. Consider use of augmented and alternative communication methods, visual material or other visual aids, such as material in Easy Read format. Arrange an interpreter, or support from Aboriginal and Torres Strait Islander health workers and health practitioners, if needed. Healthcare services have a responsibility to provide support for alternative communication options where they are needed.

The involvement of the person’s support network, such as family members, guardians, support workers or other people the person trusts can be beneficial. Identify and involve members of the person’s support network in their care, in line with the person’s needs and wishes.

Ensure that information about the person’s preferences for care is included in the person’s healthcare record, so this can be used to guide reasonable adjustments and decision‑making.

Ensure that policies and procedures are in place to support healthcare providers to deliver person‑centred care to people with cognitive disability and impairment. These should
ensure that:

• information and resources, such as shared decision‑making tools, are available to meet diverse health literacy, medicines literacy, communication and cultural needs
• the person’s family, support people or nominated decision‑maker have been identified and documented in the healthcare record
• the person and their appropriate family, support people or nominated decision‑maker are provided with information about their care
• the person and their appropriate family and support people are involved in decisions about their care to the greatest extent possible or to the extent that they choose (for example, if a person does not have capacity for decision‑making, they are still consulted to the greatest extent possible, by those who will make the decision)
• reasonable adjustments are identified and implemented to facilitate the person’s active participation in decision‑making, including support to enable a person with capacity to make a decision, and support to increase participation by those without capacity.

Ensure adequate skills and competence in the workforce by:

• providing rights‑based training and communication skills training to relevant members of the workforce
• providing members of the workforce with training on capacity assessments
• providing members of the workforce with training on techniques to support participation in decision‑making by people with cognitive disability or impairment.

You have a right to health care that is based on your preferences, needs and values, and the right to say what you think will be best for your life. You have a right to be involved in discussions and making choices about your care. You have a right to be treated with respect. These rights are protected by laws which must be followed by those providing your care.

Your healthcare provider will try to understand what matters to you. This includes your personal experiences, culture, religious or spiritual beliefs, and the things you like and do not like. When the person being treated is a child or adolescent under 18 years of age, this involves understanding that their needs and interests will change as they grow and develop.

When it comes to making choices about your care – including whether to have medicines – you should be asked what you want. To help you make informed choices, your healthcare provider will give you information in a way that meets your needs.

Some people can make choices independently, and some people may need support to make their own decisions. Support might be from another person – such as a family member, friend, support worker or a member of an advocacy organisation – to help you understand the information and make your own choice. Support might mean giving you time to consider the choices, practical support such as having a translator or making sure you have your hearing aids, or providing information in a way that is best for you. Support does not mean that somebody else decides for you.

Some people may not be considered able to make a decision about their care, even with support. If the person is an adult, there are ways to appoint someone to make decisions on their behalf, and their views and wishes should still be sought when someone else is making decisions about their care. For children and adolescents under 18 years of age, parents usually hold legal authority to make decisions on their behalf; however, the views and wishes of a child or adolescent should still be sought and should inform final decisions.

For clinicians and healthcare services

Understanding the person’s cultural background is essential to providing culturally inclusive, safe and responsive person‑centred care.

Culture is central to the social and emotional wellbeing of Aboriginal and Torres Strait Islander peoples. Connectedness to family, community and country, the person’s role within family and community, and the significant sense of loss, grief and trauma from past and current events that many Aboriginal and Torres Strait Islander people experience may affect their choices for care. They may not identify or be comfortable with an individualised approach, and instead see their identity strongly connected with family, community and country. This means that planning the care of an Aboriginal or Torres Strait Islander person with cognitive disability or impairment should consider their individual connections.

Person‑centred care approaches for people from CALD backgrounds should emphasise the role of cultural belonging and acknowledge potential cultural differences in beliefs about treatments, care and decision‑making. Alternative approaches may be required for people from CALD communities who are experiencing isolation and loneliness, and for those who do not have extended family networks, to support them to be active participants in their care.

Consider the varying meanings of the term ‘family’ in different cultures. For example, family may include people who are not first‑ or second‑degree relatives but culturally have a close tie to the person or are important in their culture and link to country.

General

• Australian Commission on Safety and Quality in Health Care
  • Person-centred care
  • Intellectual disability and inclusive health care
  • Cognitive impairment
  • User guide for health service organisations providing care for patients with cognitive impairment or at risk of delirium

Aged care

• What is person-centred care? from the Aged Care Quality and Safety Commission
• Supported Decision-Making in Aged Care: A policy development guideline for aged care
  providers in Australia, second edition from the Cognitive Decline Partnership Centre
• Supporting decision-making: A guide for people living with dementia, family members and carers from the Cognitive Decline Partnership Centre
• Supported Decision-Making: Help and assistance for decision makers and supporters from the Cognitive Decline Partnership Centre
• Dementia and changed behaviours: supporting the person at the centre from NPS MedicineWise
• Assessment and Management of Behaviours and Psychological Symptoms associated
  with Dementia (BPSD) from NSW Health

Disability care

• Diversity, dignity, equity and best practice: A framework for supported decision-making from the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability
• Responding to Needs of People with Disability during Hospitalisation policy directive from NSW Health
• Your right to good health care fact sheet from the Council for Intellectual Disability
• The Department of Developmental Disability Neuropsychiatry: A guide to resources, developed by the Department of Developmental Disability Neuropsychiatry (3DN) to assist healthcare services with providing care to people with intellectual disability, including guidance about principles to support service delivery, suggestions for reasonable adjustments, assessing and managing behaviours of concern, and supporting responsible psychotropic prescribing in people with an intellectual disability
• Intellectual Disability Network from the NSW Agency for Clinical Innovation
• Supported Decision Making from Inclusion Australia

Culturally safe and equitable care

• Yarning to Make Health Decisions Together from the NSW Agency for Clinical Innovation
• ‘No More Waiting’: A guide for organisations to plan with Aboriginal people with disability from the Intellectual Disability Behaviour Support Program, University of New South Wales

When psychotropic medicines are being considered, obtain informed consent prior to prescribing. Informed consent should be obtained from the person if they have capacity to make an informed decision independently or to do so with appropriate support. In the case of a child or adolescent under 18 years of age, informed consent should be obtained from parents or guardians as they usually have legal authority to make decisions on the child or adolescent’s behalf.

Provide information about the reasons the medicine is being suggested and the intended duration of treatment. Discuss the potential benefits and risks of different treatment options with the person, together with their family, support people or nominated decision‑makers as appropriate.

Consider the person’s specific communication and health literacy needs, as well as their decision‑making capability and how it could be enhanced with the right adjustments and support. Make reasonable adjustments as necessary to support the person’s understanding and facilitate their involvement in decision‑making to the greatest extent possible.

If the person lacks capacity to provide informed consent to psychotropic medicines even with support, seek consent in accordance with the relevant state or territory legislation.

The person’s views and wishes should still be sought to inform any decisions about their
care (see Box 1).

Exemptions apply in emergency situations (see Box 2).

Document the outcome in the person’s healthcare record as part of the informed
consent process.

Cultural safety and equity

Policies and training should support care that is culturally sensitive and culturally safe for Aboriginal and Torres Strait Islander people with cognitive disability or impairment. When providing care to Aboriginal and Torres Strait Islander people, provide access to translators
and/or cultural interpreters as necessary, particularly during assessment, diagnosis and consenting processes.

Healthcare providers need to recognise and be responsive to the cultural and linguistic needs of CALD people with cognitive disability or impairment. A variety of communication tools may be required, including working with bilingual, bicultural members of the workforce or professional interpreters across the whole service pathway, but especially during assessment and consenting processes.

People with cognitive impairment or disability may lose second languages such as English.
In such cases:

• healthcare interpreters should be used
• cultural and communication protocols should be followed
• communication boards may be important aids – these and other useful resources can be obtained from the Centre for Cultural Diversity in Ageing.

Ensure that policies and procedures outline requirements for providing psychotropic medicines information and obtaining and documenting informed consent.

Ensure that systems are in place for healthcare providers to provide information about psychotropic medicines and discuss their use with the person, and family members, support people and nominated decision‑makers as appropriate. To enable informed decision‑making, these discussions should include a description of the risks and benefits of taking or not taking psychotropic medicines.

Ensure that policies and procedures enable the person, family members and support people to receive information in ways they can understand and to have an opportunity to ask questions before consent is sought. Ensure policies and procedures support a person’s rights to make decisions and include the use of reasonable adjustments in line with the person’s needs. These should help the person, family members and support people to participate more effectively in decision‑making about their treatment, consistent with the NSQHS Partnering with Consumers Standard.

If a person needs supports and adjustments to enhance their participation in decision‑making, ensure that information about the types of support required is documented and accessible in clinical communications to all relevant healthcare providers. This is especially important when care is provided by a multidisciplinary team, and when a person is transferred or referred to another healthcare setting or healthcare provider. Processes for seeking informed consent should consider that the person’s capacity may fluctuate, and capacity should be reviewed periodically to ensure that consent remains valid. Ensure policies and procedures are consistent with relevant guidelines and legislation for assessing capacity and seeking informed consent (see Box 1) and for exemptions in emergency situations (see Box 2).

Cultural safety and equity

Policies and training should support care that is culturally sensitive and culturally safe for Aboriginal and Torres Strait Islander people with cognitive disability or impairment. When providing care to Aboriginal and Torres Strait Islander people, provide access to translators and/or cultural interpreters as necessary, particularly during assessment, diagnosis and consenting processes.

Healthcare providers need to recognise and be responsive to the cultural and linguistic needs of CALD people with cognitive disability or impairment. A variety of communication tools may be required, including working with bilingual, bicultural members of the workforce or professional interpreters across the whole service pathway, but especially during assessment and consenting processes.

People with cognitive impairment or disability may lose second languages such as English.
In such cases:

• healthcare interpreters should be used
• cultural and communication protocols should be followed
• communication boards may be important aids – these and other useful resources can be obtained from the Centre for Cultural Diversity in Ageing.

If psychotropic medicines are suggested for you, you have the right to have a say and be involved in decisions about having them.

The medicine should only be used after you have given informed consent. In an emergency where there is a risk you might seriously hurt yourself or someone else, your healthcare provider can use psychotropic medicines without your consent. Whenever possible they should still try to ask for your consent first.

To provide informed consent, you should be given information about why the medicine is being suggested, how long you might need to take it, the good and bad things about taking it, what might happen if the medicine is not taken, and possible alternatives to using the medicine. You should have the chance to ask questions and decide whether or not to have the medicine. After you have received all the information, you can choose not to consent. This information should also be provided to the people who are closely involved in your healthcare decisions, such as your family, support people or the person who makes healthcare decisions on your behalf (if you have someone with this responsibility). In the case of a child, this will often include their parents or guardians.

You can make your decision in a way that feels comfortable for you and so that you don’t feel pressured by others. This might mean having a discussion in private, or it might mean having time to make the decision.

You can also involve someone to help you make your decision, for example a family member, if you need or would like. This is called supported decision making.

Even after you give your consent you can still ask more questions, request more information or change your mind.

If you are not able to make decisions about using a psychotropic medicine because of your current mental state, or in the case of a child or adolescent under 18 years of age, a decision can be made by others who are authorised to make decisions about your care for you. This person can be described as a nominated or substitute decision‑maker, but other titles may be used for them too. Even if a nominated decision‑maker makes a decision on your behalf, they should take into account your wishes and preferences that you have made known to them.

A record of the discussion and your decision will be kept in your healthcare record so that everyone involved in your care knows what your wishes are.

For clinicians

Policies and training should support care that is culturally sensitive and culturally safe for Aboriginal and Torres Strait Islander people with cognitive disability or impairment. When providing care to Aboriginal and Torres Strait Islander people, provide access to translators
and/or cultural interpreters as necessary, particularly during assessment, diagnosis and consenting processes.

Healthcare providers need to recognise and be responsive to the cultural and linguistic needs of CALD people with cognitive disability or impairment. A variety of communication tools may be required, including working with bilingual, bicultural members of the workforce or professional interpreters across the whole service pathway, but especially during assessment and consenting processes.

People with cognitive impairment or disability may lose second languages such as English.
In such cases:

• healthcare interpreters should be used
• cultural and communication protocols should be followed
• communication boards may be important aids – these and other useful resources can be obtained from the Centre for Cultural Diversity in Ageing.

For healthcare services

Policies and training should support care that is culturally sensitive and culturally safe for Aboriginal and Torres Strait Islander people with cognitive disability or impairment. When providing care to Aboriginal and Torres Strait Islander people, provide access to translators and/or cultural interpreters as necessary, particularly during assessment, diagnosis and consenting processes.

Healthcare providers need to recognise and be responsive to the cultural and linguistic needs of CALD people with cognitive disability or impairment. A variety of communication tools may be required, including working with bilingual, bicultural members of the workforce or professional interpreters across the whole service pathway, but especially during assessment and consenting processes.

People with cognitive impairment or disability may lose second languages such as English.
In such cases:

• healthcare interpreters should be used
• cultural and communication protocols should be followed
• communication boards may be important aids – these and other useful resources can be obtained from the Centre for Cultural Diversity in Ageing.

General

• Australian Commission on Safety and Quality in Health Care
  • User guide for health service organisations providing care for patients with cognitive impairment or at risk of delirium
  • Informed consent

Aged care

• Consent for medication in aged care from the Aged Care Quality and Safety Commission
• Consent requirements for the use of restrictive practices in residential aged care from the Australian Government Department of Health and Aged Care
• Medication: It’s your choice from the Older Person’s Advocacy Network
• Supported decision-making from the Cognitive Decline Partnership Centre
• Centre for Cultural Diversity in Ageing

Disability care

• My Rights Matter – Supported decision making hub from the Council for Intellectual Disability
• About decision making capacity from Capacity Australia
• Supported decision making from Inclusion Australia
• How to make choices about taking medication Easy Read information about taking medicines by Peter Bates, from the University of Bristol

When a person’s behaviours cause concern to themselves or others, undertake a comprehensive assessment, including an accurate description and analysis of the behaviour, its antecedents and consequences, and its potential clinical, psychosocial and environmental causes.

If the behaviour poses immediate or potential risks to the safety of the person or those around them, consider whether immediate action is necessary to ensure safety.

Use a person‑centred approach to assessing the person

Identify and make reasonable adjustments to support the person during the assessment.
For example, remove distractions or arrange for one of their family members or support people to be present during the assessment if this is in line with the person’s wishes. Consider their wellbeing, their ability to communicate and preferred communication methods, and the environment in which the assessment is conducted.

Consult any available care or support plans, including the person’s behaviour support plan
(required for recipients of aged care services and for some recipients of NDIS services).
If the person has such a plan in place, but it is not available, attempts should be made to 
access it.

Clinical assessment

Assess for clinical causes first:

• be aware of the risk of mistakenly attributing physical symptoms or altered behaviours to a person’s disability or cognitive impairment, when another cause might be present
• undertake a physical examination, including a check of vital signs, and consider medical and mental health‑related causes, including delirium
• consider pain, especially in older people who are unable to verbalise and report pain:
  • undertake a suitable assessment of pain that includes non‑verbal indicators of pain, such as facial expressions
  • consider initiating a time‑limited trial of analgesia, with appropriate assessment for the origin – refer to Therapeutic Guidelines: Pain and analgesia for further information about assessing pain in older people and people with impaired cognition.

Psychosocial and environmental assessment

Consider psychosocial and environmental causes for the behaviour and conduct or arrange further assessment as appropriate. Consider the person’s stage of psychosocial development, skills and support needs, as well as their social and environmental circumstances and the context in which the behaviour occurs. Several tools are available to assist with assessing psychosocial and environmental factors in behaviour (see Related resources).

Involve others as appropriate

Consider referral to other healthcare providers, specialist services or people skilled in undertaking behavioural assessments. For example, referral could be for an assessment to accurately define and describe the behaviour, the function it serves and its consequences. This can help inform management and allow for recording of behavioural data for monitoring the type and patterns of behaviour.

Involve others who know the person well, such as parents, siblings, other family members or other members of the person’s support network, if possible and in accordance with the person’s wishes. These people can provide valuable information about the person’s usual behaviour, likes and dislikes, cultural background, life experiences, needs and abilities, preferred communication methods and coping mechanisms. They may also have an important role in reducing a person’s distress or de-escalating situations. They can do this by providing a familiar face, informing healthcare providers of strategies that have helped calm the person in the past, and helping healthcare providers understand what the person’s behaviours may be communicating. Document the findings of the assessment in the person’s healthcare record; these findings should inform the person’s ongoing management plan. 

Refer to Therapeutic Guidelines: Psychotropic and to Therapeutic Guidelines: Developmental disability for further information about assessing people with cognitive disability or impairment.

Cultural safety and equity

Consider the communication needs of people with cognitive disability or impairment, including needs related to culture, during an assessment. Assess the person’s level of understanding of verbal communication and English language, and their ability to communicate their needs. Consider support and make reasonable adjustments for those who have limited speech or a primary language other than English. The presence of a support person may enable better communication.

People with cognitive disability or impairment may not tolerate assessment.
Consider adjustments to support assessment, such as moving the person to a separate room or using Easy Read resources or visual aids to explain what will happen.

Provide care that is culturally safe and informed to Aboriginal and Torres Strait Islander people with cognitive disability or impairment, and use translators and/or cultural interpreters when appropriate, particularly during assessment.

Consider the varying meanings of the term ‘family’ in different cultures. For example, family
may include people who are not first‑ or second‑degree relatives but culturally have a close tie to the person or are important in their culture and link to country.

Ensure that systems are in place for healthcare providers to safely carry out a comprehensive assessment for people with behaviours of concern, and to document results in the person’s healthcare record. Such assessment should consider the behaviour’s context and its clinical, psychosocial and environmental causes. Clinical assessment should also include assessment for delirium. Ensure that policies and procedures support reasonable adjustments for people with cognitive disability or impairment to facilitate their assessment (see Related resources). This may include:

• involving family members and support people in the assessment with the person’s consent, and involving nominated decision‑makers as appropriate. This may include allowing access for family, support people, and nominated decision‑makers access to the health care service outside regular visiting hours
• considering the environment in which the assessment takes place and allowing for modifications to provide safe and supportive care (for example, moving the person to a quieter room)
• referring to any care plans that document existing behaviours and management strategies, such as advanced care plans or behaviour support plans (required for recipients of aged care services and some recipients of NDIS services).

Ensure that any records of legal nominated decision‑makers, guardianship or administration orders are kept in an easily accessed place. Ensure all members of the workforce who care for the person are aware of these arrangements.

Train and educate the workforce about the potential causes of behaviours in people with cognitive disability or impairment, including in relation to trauma‑informed care. Ensure that all those involved in providing care are aware of the role of care plans, including any behaviour support plans required under aged care or NDIS regulations for recipients of these services. Support referral to suitably trained providers if required to assess behaviours and contributing psychosocial or environmental factors.

Cultural safety and equity

Consider the communication needs of people with cognitive disability or impairment, including needs related to culture, during an assessment. Assess the person’s level of understanding of verbal communication and English language, and their ability to communicate their needs. Consider support and make reasonable adjustments for those who have limited speech or a primary language other than English. The presence of a support person may enable better communication.

People with cognitive disability or impairment may not tolerate assessment.

Consider adjustments to support assessment, such as moving the person to a separate room or using Easy Read resources or visual aids to explain what will happen.

Provide care that is culturally safe and informed to Aboriginal and Torres Strait Islander people with cognitive disability or impairment, and use translators and/or cultural interpreters when appropriate, particularly during assessment.

Consider the varying meanings of the term ‘family’ in different cultures. For example, family may include people who are not first‑ or second‑degree relatives but culturally have a close tie to the person or are important in their culture and link to country.

If you or someone else notices that your reactions or behaviour are different from usual, this could be a sign that something is wrong. A healthcare provider, such as a doctor or nurse, will assess you to try to understand what might be causing you to behave this way to see what could be done to help you.

If your behaviour is dangerous to you or other people, your healthcare providers will first need to act to keep everyone safe. This includes when you have a medical problem that needs to be treated quickly but you are too distressed to let anyone assess you. Your healthcare provider will find a way to make you and others safe before they continue. Sometimes this may mean using medicines without your consent.

Your healthcare provider will check all the different reasons that might have caused your behaviour. For example, you might be in pain, feel sick or be upset by something. They will check your physical health, your medical history, medicines you are using, circumstances in your life and how you are feeling – including asking you whether something has upset you or caused your behaviour to change. If you would like someone to be with you during the assessment, for example a family member, this can be arranged. If you prefer not, that’s okay as well.

Your healthcare provider will also refer to care plans and other reports to support you if you have them in place. If you need extra support for the assessment, this should be provided – for example, if you need help understanding what is being asked or to communicate with your provider.

Your healthcare provider may want to talk to other people who know you well, such as your family, support people, or people who make decisions about your care on your behalf. People who know you well may be able to help explain the issues affecting you. They may also be able to help you say what you want to say.

If someone is speaking on your behalf, you should be asked for permission for them to be involved.

The results of your assessment will be documented in your healthcare record and used to guide your care.

For clinicians 

Consider the communication needs of people with cognitive disability or impairment, including needs related to culture, during an assessment. Assess the person’s level of understanding of verbal communication and English language, and their ability to communicate their needs. Consider support and make reasonable adjustments for those who have limited speech or a primary language other than English. The presence of a support person may enable better communication.

People with cognitive disability or impairment may not tolerate assessment.
Consider adjustments to support assessment, such as moving the person to a separate room or using Easy Read resources or visual aids to explain what will happen.

Provide care that is culturally safe and informed to Aboriginal and Torres Strait Islander people with cognitive disability or impairment, and use translators and/or cultural interpreters when appropriate, particularly during assessment.

Consider the varying meanings of the term ‘family’ in different cultures. For example, family
may include people who are not first‑ or second‑degree relatives but culturally have a close tie to the person or are important in their culture and link to country.

For healthcare services

Consider the communication needs of people with cognitive disability or impairment, including needs related to culture, during an assessment. Assess the person’s level of understanding of verbal communication and English language, and their ability to communicate their needs. Consider support and make reasonable adjustments for those who have limited speech or a primary language other than English. The presence of a support person may enable better communication.

People with cognitive disability or impairment may not tolerate assessment.
Consider adjustments to support assessment, such as moving the person to a separate room or using Easy Read resources or visual aids to explain what will happen.

Provide care that is culturally safe and informed to Aboriginal and Torres Strait Islander people with cognitive disability or impairment, and use translators and/or cultural interpreters when appropriate, particularly during assessment.

Consider the varying meanings of the term ‘family’ in different cultures. For example, family may include people who are not first‑ or second‑degree relatives but culturally have a close tie to the person or are important in their culture and link to country.

General

• User guide for health service organisations providing care for patients with cognitive impairment or at risk of delirium from the Australian Commission on Safety and Quality in Health Care

Aged care

• Behavioural Assessment Form and Behaviour Frequency Chart from Dementia Support Australia
• Dementia Outcomes Measurement Suite (DOMS), a compendium of tools to assess BPSD, from Dementia Centre for Research Collaboration
• Assessment and Management of Behaviours and Psychological Symptoms associated with Dementia (BPSD) from NSW Health
• Behaviour Management: A Guide to Good Practice and resources to support the management of behaviours and psychological symptoms associated with dementia (such as the Clinicians Field Guide to Good Practice, Guide for Family Carers, BPSD app for clinicians and Care4Dementia app for family members), from the Dementia Centre for Research Collaboration

Disability care

• Developmental Behaviour Checklist, a suite of questionnaires completed over six months by parents, other primary carers or teachers to inform assessment of behavioural and emotional problems of children, adolescents and adults with developmental and intellectual disabilities
• Compendium of Resources for Positive Behaviour Support: A guide for behaviour support practitioners, a comprehensive list of positive behaviour support assessment tools that can be used by behaviour support practitioners for behaviour support assessment, planning, intervention, monitoring and review, from the NDIS Quality and Safeguards Commission
• The Department of Developmental Disability Neuropsychiatry: A guide to resources, developed by the Department of Developmental Disability Neuropsychiatry (3DN) to assist healthcare services with providing care to people with intellectual disability, including guidance about principles to support service delivery, suggestions for reasonable adjustments, assessing and managing behaviours of concern, and supporting responsible psychotropic prescribing in people with an intellectual disability

Non‑medication strategies that are non‑restrictive in nature are considered the best‑practice response to behaviours of concern. They are the primary component of initial and ongoing care and should be used by the multidisciplinary team to prevent or reduce behaviours of concern. Non‑medication strategies should be continued even if psychotropic medicines are trialled. Medicines should not be used on their own.

Choose non‑medication strategies based on precipitating and modifiable causes for the person’s behaviour. A combination of non‑medication strategies may be used and is usually most effective. Document the choice of strategies in a place that can be easily accessed by all those involved in the person’s care. Communicate the strategies to everyone who regularly interacts with the person. Non‑medication strategies should be documented in a behaviour support plan for all people receiving aged care services, and for NDIS participants with behaviours of concern, especially if psychotropic medicines form part of their care.

People who do not have an aged care‑ or NDIS‑required behaviour support plan will still benefit from a coordinated approach to the use of non‑medication strategies: share information about effective non‑medication strategies with others who support the person’s care so they can be integrated consistently into the person’s care.

When choosing and implementing non-medication strategies:

• use the results of the person’s assessment (as described in Quality statement 3 – Assessing behaviours) to guide choice of non‑medication strategies and ensure they are tailored to the person’s preferences as much as possible
• ensure that systems are in place for healthcare providers to safely carry out a comprehensive assessment for people with behaviours of concern, and to document results in the person’s healthcare record. Such assessment should consider the behaviour’s context and its clinical, psychosocial and environmental causes
• encourage the use of non‑medication strategies in the everyday care of the person, taking into account who will be using the strategies and their ability to use them.

Cultural safety and equity

Consider causes for behaviour that may relate to a lack of cultural safety, including previous experiences of health care. Consider appropriate non‑medication strategies that will meet a person’s cultural needs. Be aware of the person’s sense of family and connection and if a lack of contact is worsening the person’s behaviours of concern.

Ensure that systems, processes and resources are in place for the multidisciplinary team to offer and use appropriate non‑medication strategies in response to behaviours of concern both first‑line and as part of ongoing care.

Establish appropriate leadership and governance for oversight of these systems.

Ensure each member of the workforce is trained and competent in the use of non‑medication strategies – appropriate to their role and scope of practice – that could be implemented for a person with behaviours of concern. This may involve identifying specialist clinicians or lead clinicians at a healthcare service level to train the workforce in the use of de‑escalation techniques and other non‑medication strategies.

Provide systems to support documentation of the non‑medication strategies that are recommended and used for the person, and to embed strategies that are effective for the person into their care. Enable members of the workforce to implement environmental changes when appropriate, such as lighting, noise, signage (for example, toilet locations), privacy or access to outdoor space.

Policies should incorporate use of the person’s regulated aged care or NDIS behaviour support plan and take into account the information provided in the plan, as well as any information provided by the person’s family, support people or care provider.

Cultural safety and equity

Consider causes for behaviour that may relate to a lack of cultural safety, including previous experiences of health care. Consider appropriate non‑medication strategies that will meet a person’s cultural needs. Be aware of the person’s sense of family and connection and if a lack of contact is worsening the person’s behaviours of concern.

Behaviours that cause concern to you or others can often be reduced and sometimes prevented without using medicines. Ways of responding to behaviours that don’t involve medicines are known as ‘non‑medication strategies’ or ‘positive behaviour support strategies’.

Your healthcare providers and any other person involved in your care should use non‑medication strategies whenever possible when addressing behaviours of concern. Non‑medication strategies are the best way to respond to these behaviours and to support your wellbeing. Even if medicines are used, non‑medication strategies should always be used alongside them.

The non‑medication strategies used will depend on what causes your behaviour. Understanding the causes of your behaviour helps identify ways to prevent it from happening. Avoiding these causes might mean adjusting your environment – for example, managing temperature, noise and lighting, and making sure you have familiar objects or people around you – or doing activities that you enjoy or are meaningful and of interest to you.

Information about non‑medication strategies for you should be written down somewhere and communicated to the people looking after you or involved in your daily life so they know how to support your wellbeing. This information might be written down in your healthcare record, or your behaviour support plan if you have one. If you have a behaviour support plan, it will contain important information about the circumstances that may cause these behaviours and what can be done to help prevent or reduce them. Your healthcare providers should be informed about your behaviour support plan and use it to look after you and prevent or reduce these behaviours.

For clinicians 

Consider causes for behaviour that may relate to a lack of cultural safety, including previous experiences of health care. Consider appropriate non‑medication strategies that will meet a person’s cultural needs. Be aware of the person’s sense of family and connection and if a lack of contact is worsening the person’s behaviours of concern.

For healthcare services 

Consider causes for behaviour that may relate to a lack of cultural safety, including previous experiences of health care. Consider appropriate non‑medication strategies that will meet a person’s cultural needs. Be aware of the person’s sense of family and connection and if a lack of contact is worsening the person’s behaviours of concern.

General

• User guide for health service organisations providing care for patients with cognitive impairment or at risk of delirium from the Australian Commission on Safety and Quality in Health Care

Aged care

• Dementia Support Australia, incorporating the Dementia Behaviour Management Advisory Services (DBMAS), which provides clinical support to healthcare providers, and family and support people of a person showing BPSD, including for care at home (a 24‑hour helpline is available 
  on 1800 699 799)
• A Guide for Family Carers: Dealing with behaviours in people with dementia from the Dementia Centre for Research Collaboration
• Care of Confused Hospitalised Older Persons (CHOPs) from NSW Health

Disability care

• Compendium of Resources for Positive Behaviour Support: A guide for behaviour support practitioners, a comprehensive list of positive behaviour support assessment tools that can be used by behaviour support practitioners for behaviour support assessment, planning, intervention, monitoring and review, from the NDIS Quality and Safeguards Commission

If the person has a behaviour support plan, it should be considered and integrated into the person’s care. A behaviour support plan is a written document prepared in collaboration with the person with cognitive disability or impairment, their family and support people. It brings together important information about the person’s background, preferences for care, and what may cause and prevent behaviours of concern.

Aged care providers are legally required to have a behaviour support plan in place for every consumer who experiences behaviours of concern or has restrictive practices used as part of their care, unless in an emergency. NDIS participants with behaviours of concern should have a behaviour support plan, although this is not a legal requirement unless restrictive practices are used. The behaviour support plan is most often written by a behaviour support practitioner, or an authorised allied health professional, such as a psychologist, or nurse who knows the person and has assessed their behavioural needs.

A behaviour support plan developed under aged care or NDIS regulations is intended to prevent, reduce and potentially eliminate the need for restrictive practices. This is most likely to be achieved when the plan is appropriate for the person and is followed by all those involved in the person’s daily life and care, including those working in healthcare services.

Clinicians providing care to people who have an existing behaviour support plan can support the person’s care and wellbeing by:

• considering the following information in the behaviour support plan and integrating it into the person’s care as appropriate for their clinical situation
  • information about the person’s usual behaviour and probable causes for behaviours of concern
  • behavioural support needs and practices that are recommended, including non‑medication strategies that are non‑restrictive in nature
  • the person’s communication needs
  • the intended use of any regular or ‘when required’ (PRN) psychotropic medicines, including any changes to prescribed psychotropic medicines arising during the implementation or monitoring of the plan.
• informing updates to the plan (as appropriate to the context of care) by:
  • recording behavioural data relating to the plan and the effectiveness of the strategies outlined (usually documented by support workers and others involved in the person’s ongoing care)
  • identifying and documenting behavioural responses to healthcare situations that may need to be considered in the behaviour support plan, if not already covered
  • providing information back to the person responsible for the plan (for example, to the service provider)
  • documenting and communicating the extent to which the behaviour support plan has been implemented as intended
  • reviewing psychotropic medicines use described in the plan and providing information back to the service provider about their effectiveness, including any PRN use of medicines.

Any use of a restrictive practice that is not in the person’s behaviour support plan should trigger an immediate review of the person and their plan. The review should include of this will need to include members of the workforce engaged in the day‑to‑day care of the person and the person’s behaviour support practitioner, if they have one.

Healthcare services that provide care to people with cognitive disability or impairment who
have an existing behaviour support plan should:

• provide guidance and protocols to ensure the behaviour support needs outlined in the person’s behaviour support plan are recognised and responded to during their care, which can prevent escalation of behaviours of concern and reduce the need to use restrictive practices such as psychotropic medicines
• ensure that acknowledgement and use of the person’s behaviour support plan and relevant feedback about the person’s response are included in the person’s healthcare record and correspondence, and that this is shared appropriately with other providers of care and support
• establish relationships with local aged care and disability coordinators or case managers who can assist in escalation of plan reviews or provide other expert advice when required.

Healthcare services that are responsible for ensuring that a behaviour support plan is
developed should:

• ensure that behaviour support plans are clear and concise so they are easy to use by the person, their family, support people and healthcare providers
• ensure that behaviour support plans consider feedback provided by other healthcare providers about the person, including further behaviour support needs that may arise in healthcare settings, such as during hospitalisation
• refer to guidelines for developing behaviour support plans provided by the NDIS Quality and Safeguards Commission or Aged Care Quality and Safety Commission, as relevant.

If you sometimes experience behaviours that could cause harm or distress to yourself or others, your care providers, other providers, or someone who knows you well may have developed a plan to help you and others prevent the behaviour and support your wellbeing. This is often called a behaviour support plan. If you also receive services from aged care or have behaviours of concern and receive services from NDIS, then you should have a behaviour support plan.

If you have a behaviour support plan, it is important that it is used by the people who provide you with care. The plan helps everyone to have a shared understanding about how to best support your wellbeing.

The plan is developed by someone who works with you to understand what can cause your behaviour. It describes why your behaviour happens, and things that you and other people can do to help prevent the behaviour from happening. This might include doing activities that you like, or learning new ways to cope when things get difficult. The plan explains what other people can do and helps them to see when you may need extra support and how to communicate with you better.

Sometimes, a behaviour support plan might include use of medicines to help you change or stop a behaviour, for example, to stop you from hurting yourself or others. When a medicine is used this way, it is referred to as a restrictive practice. Having a behaviour support plan should help to reduce the use of medicines to influence your behaviour.

Your plan will probably change over time as you and your care team learn what causes your behaviour and what works and doesn’t work.

It is important to check that the plan is helping and things are getting better over time. If the plan is not helping, something may need to change.

Aged care

• Behaviour support plans – fact sheet from the Aged Care Quality and Safety Commission
• Dementia Support Australia, which provides support for people living with dementia and
  who have behaviours of concern, including
  • Help with the assessment of people living with dementia in residential aged care and
    recommendations on appropriate interventions
  • Behaviour support plan resources toolkit, which assists healthcare and service providers with the changes to the requirements for residents of aged care homes to have a behaviour support plan
  • For more information see the Dementia Support Australia (DSA) website

Disability care

• Behaviour Support and the Use of Medication: A guide for practitioners from the Intellectual Disability Behaviour Support Program
• NDIS Quality and Safeguards Commission
  • Behaviour support introduction booklet
  • Participant fact sheets for behaviour support
  • Understanding behaviour support and restrictive practices – for providers
  • Fact sheets and process guides
  • Submitting behaviour support plans and reports – the Interim behaviour support plan template and the Comprehensive behaviour support plan template

Avoid prescribing psychotropic medicines for behaviours of concern in people with cognitive disability or impairment. They should be considered only if the behaviours pose a substantial risk to the person or others or are significantly reducing the person’s quality of life. Prior to prescribing, a reasonable and systematic trial of non‑medication strategies should have taken place and found to have been ineffective, or to have produced an inadequate response. When there is a high risk of immediate harm, it may not be possible to implement the most appropriate non‑medication strategies, but basic steps that are reasonable in the circumstances (such as verbal de‑escalation and managing the environment) should still be taken.

Behaviours of concern can also lead to significant risk by preventing clinical assessment or treatment of a person in distress. Short‑term use of psychotropic medicines to facilitate clinical assessment of a medical problem or unmet medical need may be appropriate, especially in an emergency context (see also Quality statement 2 – Informed consent for psychotropic medicines).

In some people with cognitive impairment, a mental health diagnosis may be suspected but difficult to assess. Psychotropic medicine may be appropriate as a time‑limited trial when a mental illness diagnosis cannot be made with certainty but is considered probable. Details of the clinical assessment and expected effect of the medicines should be documented. If possible, trial one medicine at a time, with clearly articulated and measurable outcomes, for a specific initial duration.

Consider the risks of psychotropic medicines for the specific person and indication – examples include risks of falls and risks that impact swallowing.

In children, psychotropic medicines should ideally be started and managed in consultation with a clinician with expertise in this area, such as a child psychiatrist or paediatrician.

Document the reason for use of any psychotropic medicine in the person’s healthcare record to facilitate effective clinical communication and ongoing review. If medicine is prescribed to be taken PRN, clearly communicate the intentions for use by documenting the minimum interval between doses and the maximum dose allowed in a 24‑hour period, in addition to the reason for the use.

For guidance on prescribing psychotropic medicines in people with cognitive disability or impairment, see Therapeutic Guidelines: Psychotropic and Therapeutic Guidelines: Developmental disability.

Ensure policies outline the safe and appropriate use of psychotropic medicines and the steps that should be followed prior to prescribing. For emergency, short‑term and ongoing use, including PRN medicines, this includes assessing whether appropriate non‑medication strategies have been systematically trialled for a reasonable period of time, according to the reason for use (for example, whether the medicine was used in an emergency or in a less acute context).

Ensure documentation of the reason for prescribing for any psychotropic medicine, including for medicines prescribed PRN, regardless of the indication or therapeutic use. This includes documenting the diagnosis or, in the case of a suspected mental health diagnosis in a non‑verbal person, the clinical assessment conducted and the expected effect of the medicines.

Ensure that all medication charts including electronic charts include indications for use of psychotropic medicines. If medicines are used PRN, ensure documentation about use – as well as the behaviours observed when prescribed for behaviours of concern – is available to facilitate a fully informed review of the medicines’ effectiveness.

Establish processes to audit the appropriateness of any psychotropic medicine prescribing, including medicines prescribed PRN.36 Auditing processes should include evidence of the clinical assessment and rationale for prescribing. In the context of behaviours of concern, this should include auditing evidence of an inadequate response to non‑medication strategies prior to prescribing psychotropic medicines.

Psychotropic medicines are a group of medicines that affect how the brain works. There are several different types. Most often, psychotropic medicines are used as important treatments for mental health conditions such as depression, anxiety and schizophrenia. However, sometimes they are used to control the way a person is behaving, not for treating a mental health condition as such.

Psychotropic medicines should only be used to control behaviour when there is a good reason for doing so, for example, if the behaviour is likely to harm you, harm others or is seriously reducing your ability to function and participate in everyday activities. Whenever possible, other ways of managing the behaviour should be tried first before using psychotropic medicines. However, this might not be possible if the behaviour needs to be controlled quickly, to prevent someone being hurt. In the same way, if you need urgent medical treatment, but it’s not possible due to behaviour, then psychotropic medicines may be used to help reduce your distress so that you can be examined and treated.

The reason for prescribing a psychotropic medicine and which medicine is prescribed will depend on your individual circumstances. Your healthcare provider will assess you thoroughly to see whether a psychotropic medicine may help you. If this is the case, a trial of the medicine will be discussed with you, and your family, support people or nominated decision‑maker as appropriate.

In some people with cognitive disability or impairment, it may be difficult to be sure whether the behaviour is caused by a mental health condition. In such cases, the medicine might be tried for a short time to see if it helps.

General

• User guide for health service organisations providing care for patients with cognitive impairment or at risk of delirium from the Australian Commission on Safety and Quality in Health Care
• 5 Moments for Medication Safety from the World Health Organization

Aged care

• Dementia and psychotropic medicines from NPS MedicineWise

Disability care

• Behaviour Support and the Use of Medication: A guide for practitioners from the Intellectual Disability Behaviour Support Program
• The Department of Developmental Disability Neuropsychiatry: A guide to resources, developed by the Department of Developmental Disability Neuropsychiatry (3DN) to assist healthcare services with providing care to people with intellectual disability, including guidance about principles to support service delivery, suggestions for reasonable adjustments, assessing and managing behaviours of concern, and supporting responsible psychotropic prescribing in people with an intellectual disability
• Easy Read Medicine Information Leaflets from the University of Birmingham

Ensure regular monitoring and review of a person’s response to psychotropic medicines to assess the benefits of treatment and to minimise medicine‑related harm. The goals of monitoring and frequency of review should align with the goals of treatment and the person’s individual needs.

Regular monitoring and review of psychotropic medicines is important in people with cognitive disability or impairment because:

• polypharmacy commonly occurs, particularly with multiple psychotropic medicines (psychotropic polypharmacy)
• the person may be unable to communicate adverse effects
• overall pill burden, or psychotropic medicines themselves, can cause or exacerbate dysphagia
• the medicine may no longer be required
• a different medicine may be appropriate
• the dose may not be appropriate (often dosages are unnecessarily high)
• dosage forms may be inappropriately altered by the person, their family members or support people, for example, crushing tablets that should be swallowed whole.

Determine regular monitoring and review intervals appropriate for each person. The interval for reviews is determined by the person’s response and should be consistent with best practice for the type of psychotropic medicine prescribed, the reason for use and the person’s individual risks.

Identify appropriate monitoring requirements, such as physical examinations, tests or investigations (for example, blood tests).

Involve the person’s family, support people or support workers in monitoring the person’s response – these people can provide information about medicine use and adherence, side effects, any special issues related to administration, and changes in symptoms or behaviour (as relevant).

When reviewing a person’s medicines, establish that there is a clear and appropriate rationale for prescribing and ensure it is documented in the person’s healthcare record.

At review, assess the effectiveness of the medicine on target symptoms, and any adverse effects. Include objective assessments with input from the person. Examples of objective assessments include behavioural monitoring, reports from family, support people and support workers, and direct examination of the person’s mental state.

Identify, resolve and reduce the risk of medicine‑related harm. Re‑evaluate the dose of the medicine and the effect on the person, alongside the indication for which it was prescribed. Aim to ensure medicine is prescribed at the lowest effective dose and for the minimum duration appropriate for the person and the indication.

Consider tapering and reducing the dose with a view to discontinuing the medicine (deprescribing) if treatment is ineffective, there are unacceptable adverse effects, symptoms have resolved, the person requests it, or a clear indication for use cannot be found. When reducing psychotropic medicines, develop a deprescribing plan in collaboration with the person and their family, support people or support workers and relevant healthcare providers. The plan should set out the approach to monitoring, a stepwise approach to dose reduction, the use of non‑medication strategies (which is especially important if symptoms re‑emerge) and reasons for restarting a medicine.

Ensure that family members, support people or support workers are engaged as partners in monitoring and reporting the response to each dose reduction. For advice on reducing and discontinuing psychotropic medicines, see Therapeutic Guidelines: Psychotropic and Therapeutic Guidelines: Developmental disability.

If the person has a behaviour support plan, request the plan and review medicines in the context of their plan alongside use of non‑medication strategies. The person or clinician responsible for developing the behaviour support plan should be available to discuss problems with or any changes required to the support plan.

Document the outcome of the review, including any actions or recommendations and the timing of the next review, in the person’s healthcare record. Communicate this to the person and their family or other people involved in supporting their care as appropriate.

Considerations when reviewing a person’s medicines

Consideration should be given to potential barriers to people taking an active role in a review of their medicines. People with cognitive disability or impairment who may have difficulty communicating verbally or participating in decisions about their care may require support or a nominated decision‑maker to be present.

A person’s involvement in decisions about their medicines may also vary over time. Consideration should be given to adjusting the timing of a medication review to occur when a person may have the capacity to be involved. If appropriate, family members, support people or nominated decision‑makers should be involved in the review. Healthcare services should ensure that documentation about a person’s nominated decision‑maker is available to all prescribers and those involved in the person’s care. This must include contact details that are up to date and easily accessible.

Cultural safety and equity

All people from all communities or groups should be supported to have their medicines reviewed, irrespective of diversity, background, age, location or personal circumstance.

Consider extra supports required to ensure a person’s understanding and involvement in the review, including involvement of Aboriginal or Torres Strait Islander health workers or practitioners, interpreters, family or other support people.

Establish processes to ensure a quality use of medicines approach to the monitoring and review of psychotropic medicines.

Ensure policies and procedures are in place to outline the processes for monitoring and reviewing a person’s medicines, including:

• identifying monitoring requirements according to individual needs, and how these will
  be documented
• identifying the most appropriate healthcare providers responsible for conducting a medication review
• documenting the timing of the next review, in line with the person’s individual needs and the goals of treatment
• documenting and communicating actions and recommendations to ensure they are accessible to all those involved in a person’s care (for example, the use of paper‑based or electronic forms)
• engaging with family, support people and support workers when reviewing a person’s
  medicines and seeking feedback about changes in the person’s behaviour
• ensuring the results of a review are discussed with the person and, if appropriate, parents, family, support people, support workers and other relevant people, including the person’s general practitioner or other regular prescriber
• identifying and prioritising for review people who are most at risk of, or have experienced, medicine‑related harm
• monitoring the duration of psychotropic medicines use, the appropriateness of review intervals and trends in medicine‑related harms identified during a review, which could also include harms that have been prevented.

Access Australian Government–funded medication review programs, such as Home Medicines Review (HMR) or Residential Medication Management Review (RMMR), if relevant (see Box 3).

Services responsible for the behaviour support plan should ensure those who developed it are regularly reviewing the person to ensure that the planned support strategies are in place and their usefulness is assessed when the dose of a psychotropic medicine is modified or being ceased, and reviewing the plan with regard to the person’s needs.

Considerations when reviewing a person’s medicines

Consideration should be given to potential barriers to people taking an active role in a review of their medicines. People with cognitive disability or impairment who may have difficulty communicating verbally or participating in decisions about their care may require support or a nominated decision‑maker to be present.

A person’s involvement in decisions about their medicines may also vary over time. Consideration should be given to adjusting the timing of a medication review to occur when a person may have the capacity to be involved. If appropriate, family members, support people or nominated decision‑makers should be involved in the review. Healthcare services should ensure that documentation about a person’s nominated decision‑maker is available to all prescribers and those involved in the person’s care. This must include contact details that are up to date and easily accessible.

Cultural safety and equity

All people from all communities or groups should be supported to have their medicines reviewed, irrespective of diversity, background, age, location or personal circumstance.1

Consider extra supports required to ensure a person’s understanding and involvement in the review, including involvement of Aboriginal or Torres Strait Islander health workers or practitioners, interpreters, family or other support people.

If you have been prescribed a psychotropic medicine for any reason, it is important to regularly check whether it is helping you and that it is still the best option.

Your first check‑up should occur soon after starting the medicine. How soon the check‑up occurs will depend on what medicine you are taking and the reason it was started.

You and your healthcare provider should have a way of checking whether the medicine is helping you. For example, if the medicine is expected to help you avoid a particular behaviour, keeping a record of how often the behaviour occurs after starting the medicine can build a picture of whether the medicine is helping.

When you have a check‑up, information may also be sought from people who know you well such as your family, support people or other people who are involved in your care.

This check‑up is to help to understand how well the medicine is working and whether you are experiencing any unwanted effects. If you are experiencing unwanted effects from the medicine, talk to your healthcare provider.

If the medicine is helping you and you need to continue to take it, you should keep having regular check‑ups with your healthcare provider. Sometimes your dose may need to change. If the medicine is not helping you, it should be stopped. It may also need to be stopped because of unwanted effects. If you need to stop taking a psychotropic medicine, it is important to talk with your healthcare provider to find out the best way to do this.

If you have a behaviour support plan, information about how well your medicines are working should be given to the person who developed and looks after your behaviour support plan. This is so they can make sure that your behaviour support plan is working and update it if necessary.

The results of your check‑up and any changes made will be explained to you and, if appropriate, other people who are involved in your care. This information will be written in your healthcare record, along with the date for your next check‑up. It is important to know when your medicine will next be checked. You can always ask for a check‑up sooner if you have questions or concerns about your medicines.

For clinicians 

All people from all communities or groups should be supported to have their medicines reviewed, irrespective of diversity, background, age, location or personal circumstance.

Consider extra supports required to ensure a person’s understanding and involvement in the review, including involvement of Aboriginal or Torres Strait Islander health workers or practitioners, interpreters, family or other support people.

For healthcare services 

All people from all communities or groups should be supported to have their medicines reviewed, irrespective of diversity, background, age, location or personal circumstance.1

Consider extra supports required to ensure a person’s understanding and involvement in the review, including involvement of Aboriginal or Torres Strait Islander health workers or practitioners, interpreters, family or other support people.

General

• User guide for health service organisations providing care for patients with cognitive impairment or at risk of delirium from the Australian Commission on Safety and Quality in Health Care
• Medication Management Programs from The Pharmacy Programs Administrator
• Guidelines, guides, and protocols for deprescribing specific drug classes from the Australian Deprescribing Network (ADeN)
• Deprescribing resources from Primary Health Tasmania, outlining recommended deprescribing strategies for commonly used medicines, including psychotropic medicines, when ongoing use is not appropriate, revised and updated by geriatrician Dr David Dunbabin, GP Dr Amanda Lo and pharmacist Dr Peter Tenni
• Deprescribing algorithms from the Canadian Medication Appropriateness and Deprescribing Network, evidence‑based guidelines for deprescribing, summarised in an easy‑to‑use algorithm and information brochure, to help clinicians safely stop or reduce medicines for specific drug classes, developed by researchers from the Bruyère Research Institute and the Ontario Pharmacy Research Collaboration

Aged care

• Clinical practice guidelines for the appropriate use of psychotropic medications in people living with dementia and in residential aged care
• Neuropsychiatric Inventory (NPI), a tool used to assess behaviours that can occur in people with dementia, and that can also be used to evaluate the effectiveness of treatment
• Dementia and psychotropic medicines from NPS MedicineWise
• RACGP aged care clinical guide (Silver Book – Part A): Deprescribing from the Royal Australian College of General Practitioners
• Deprescribing resources from the NSW Therapeutic Advisory Group Inc., developed by a translational research project team led by Professor Sarah Hilmer for clinicians to support deprescribing in older persons in hospital
• Reviewing and tapering antipsychotic medicines for BPSD review form from NPS MedicineWise
• Appropriate prescribing of antipsychotic medication in dementia from the NHS London Clinical Network and NHS Yorkshire and the Humber Clinical Network

Disability care

• Behaviour Support and the Use of Medication: A guide for practitioners from the Intellectual Disability Behaviour Support Program
• The Department of Developmental Disability Neuropsychiatry: A guide to resources, developed by the Department of Developmental Disability Neuropsychiatry (3DN) to assist healthcare services with providing care to people with intellectual disability, including guidance about principles to support service delivery, suggestions for reasonable adjustments, assessing and managing behaviours of concern, and supporting responsible psychotropic prescribing in people with an intellectual disability
• Medication Management Pathway from the Challenging Behaviour Foundation and Stopping Over‑Medication in People with a Learning Disability, Autism or Both (STOMP) program

Moving between healthcare settings can be distressing for people with cognitive disability or impairment. Unfamiliar environments, noises, routines and care arrangements may cause changes in a person’s behaviour. Transitions of care are associated with an increased risk of adverse events such as medication errors, especially if the transition is unplanned.

Accurate and timely communication of the person’s healthcare and behaviour support needs facilitates actions that can prevent the emergence of behaviour that could be distressing or harmful (and potentially lead to initiation of new psychotropic agents) and reduce the risk of delirium (see Interventions to prevent delirium). Identify the most effective way to share information about the person and their behaviour support needs by liaising with other healthcare or service providers.

When transferring a person to a new healthcare setting from their usual environment (such as to a hospital, a new aged care home or supported residence, or referring to a new clinician), include information about the person’s individual needs and any adjustments that may help to support their care, including:

• the need for interpreters or cultural support
• capacity to consent, need for support with decision‑making, and any existing arrangements for a substitute decision‑maker
• contact details for family members, support people or a nominated decision‑maker and, as relevant, the person’s aged care or disability service providers, general practitioner, Aboriginal and Torres Strait Islander Health and Medical Service, other care providers, and usual pharmacy (if they have one)
• medicines, including a complete and accurate medicines list, and any specific medication management needs, such as assistance required when taking medicines and potential adverse effects that may affect their care plan (such as risk of falls)
• key details about the use of any psychotropic medicines the person has been prescribed (see Box 4)
• clear and concise details about behaviour support needs where relevant, including the person’s behaviour support plan if they have one, so that those providing ongoing care know how best to continue to support the person.

People in supported residential facilities or other care services should have this information
documented by their facility and provided with the person being transferred.

When transferring a person after an episode of health care back to their usual environment
or healthcare service (including an aged care home), include information about:

• consent arrangements during the episode of care, including adjustments required to support decision‑making and any arrangements for a substitute decision‑maker
• medicines administered during the episode of care, including an accurate, comprehensive and up‑to‑date medicines list or medication chart
• changes to regular medicines, including medicines started or ceased or changed in dose, and any specific medication management needs, including management of potential adverse effects such as falls
• the reasons for any changes to regular medicines, including the initiation or discontinuation of psychotropic medicines.
• psychotropic medicines that have been prescribed and key details about their use (see Box 4)
• expected recommended duration of use of any psychotropic medicines that have been prescribed. Clear documentation at transfer will reduce the risk of inadvertent long‑term continuation or recommencement
• plans for monitoring and review of psychotropic medicines, including for periodic medication review or other review process to support the person’s medication management plan (see Quality statement 7 Box 3)
• any behaviours of concern observed under your care, how they were managed (if applicable) and the person’s response
• recommendations about behaviour support needs and relevant non‑medication strategies (including any issues not covered in an existing behaviour support plan, if they have one)
• the results of any behaviour or cognitive assessments that were carried out under your care (note that behaviour may improve after care transition, and reassessment may be needed to determine ongoing function and need for behaviour support or a change to the person’s medicines)
• contact details for questions and concerns.

Ensure that information about the person’s episode of care is provided to the person, and if appropriate, and with the person’s consent, their family, support people or nominated decision‑maker. Information should also be provided to healthcare, aged care or disability service providers who are responsible for their ongoing care.

Information should be transferred in one or more formats via secure routes; for example, paper‑based, electronic transfer (such as uploading to the person’s My Health Record) or other secure messaging system. Aged care homes may need to use additional documentation to support the safe and quality use of medicines at transitions of care. Examples include the Interim Residential Medication Administration Chart or the Aged Care Transfer-to-Hospital Envelope.

A person’s confidentiality and wishes must always be respected when sharing information about their care – consider the person’s right to privacy, confidentiality and consent requirements.

Consult the Guiding principles to achieve continuity in medication management for more information.

Ensure that systems, policies and procedures are in place that support healthcare providers to effectively communicate comprehensive, accurate and up‑to‑date information about a person’s ongoing care when a transition of care occurs. This communication should include any medicine‑related needs and any risks to the person’s behaviour that may arise with the
transition of care.

Ensure policies and procedures:

• include the need to transfer documentation about strategies known to be effective in supporting a person’s behaviour, which may avoid the use of psychotropic medicines; for example, the person’s behaviour support plan, if they have one, or documentation in the discharge summary
• include the requirement for a current medicines list to be transferred to enable continuity of medicines management
• outline expectations about the timeframe in which communication should occur – emphasising that timely communication is critical to the relevance of the information – and what to do if information is not received.

If psychotropic medicines are prescribed for behaviours of concern, ensure documentation is transferred with the person, outlining:

• behaviours that have been observed
• causes for the behaviour observed
• non‑medication strategies that were tried or used
• reason for prescribing the psychotropic medicine
• effectiveness of the medicine on the target symptoms
• potential adverse effects that may affect their care plan (such as falls risk)
• ongoing monitoring requirements
• plans for review or discontinuation of the medicine.

In acute healthcare services, implement the relevant NSQHS Standards and refer to the Guiding principles to achieve continuity in medication management to support best practice and safe and quality use of medicines at transitions of care.

With the person’s consent, information should be transferred securely, for example, through a secure messaging system, on paper, or by uploading to digital systems such as the person’s My Health Record. This provides other clinicians with access to details about the person’s care and their medicines, which can be vital for informing ongoing care in the community. Sharing information about the care provided in all care settings is especially important if the person transitions to interim care (rehabilitation or respite care) before returning to their usual residence and healthcare provider. Ensure the transfer of information takes into account consent requirements and the person’s right to privacy and confidentiality.

Aged care homes may need to use additional documentation to support the safe and quality use of medicines at transitions of care. Examples include the Interim Residential Medication Administration Chart or the Aged Care Transfer-to-Hospital Envelope.

When you move between different healthcare services, it is important that information about your care is shared between providers so they can care for you well – for example, when you enter or leave hospital, see different doctors, or move from one residential care or supported accommodation setting to another. This information should also be shared with you and, with your consent, your family, support people and other people who are involved in your care. It can be unsettling to go to hospital or a new place, have changes to your normal routine, or be with a lot of new people. Understanding how to make you feel more comfortable is important. It is also important that your healthcare needs are understood. Good communication about your care, your treatments and any support that you need helps to keep you safe and well.

For example, if you go into hospital, information about your ongoing care needs and any medicines that you take should be given to the hospital. If you have any plans to support your behaviour, they should also be given to the hospital.

When you leave hospital, information about your hospital care should be given to you, your family or support people, and other healthcare or service providers you use, including a copy of the information for your doctor. This should include information about the care you received while in hospital, such as changes to your regular medicines, and information about your behaviour support needs while you were in hospital.

If you are prescribed a psychotropic medicine and need to continue it after you leave the
healthcare service you should be given information about:

• why the medicine has been prescribed
• when it was last given to you
• how long you should take it for
• the possible side effects
• when to have a check‑up to see how well the medicine is working.

It is also important for your doctors and other healthcare providers to share this
information with each other and with others involved in your care.

General

• Australian Commission on Safety and Quality in Health Care
  − NSQHS Medication Safety Standard
  − NSQHS Communicating for Safety Standard
  − NSQHS Communicating for Safety resource portal
  − User guide for health service organisations providing care for patients with cognitive impairment or at risk of delirium
• Guiding principles to achieve continuity in medication management from the Australian Government Department of Health and Aged Care
• Pharmacist shared medicines list from the Australian Digital Health Agency
• National Medication Management Plan (NMMP), a standardised form designed for use in Australian healthcare services to improve the accuracy and completeness of documented information to support continuity of medication management and medication reconciliation during transitions of care
• Principle 4: Information sharing of the ACCHO Medicines Management Guidelines for Aboriginal Community Controlled Health Organisations
• Australian Medical Association position statement on general practice/hospitals transfer of care arrangements 2018 from the Australian Medical Association
• Chapter 6: Facilitating Continuity of Medication Management on Transition Between Care Settings of the Standards of Practice for Clinical Pharmacy Services from the Society of Hospital Pharmacists of Australia
• Chapter 16: My Health Record of the Standards of Practice for Clinical Pharmacy Services from the Society of Hospital Pharmacists of Australia

Aged care

• Aged Care Transfer-to-Hospital Envelope with Template
• Care of Confused Hospitalised Older Persons (CHOPs) from NSW Health
• TOP 5, a clinician–carer communication tool that can be used across healthcare settings to enhance the delivery of person‑centred care in people living with dementia.

Disability care

• Resources for health professionals working with people with and intellectual disability from the Monash Health Centre for Developmental Disability Health
• Practice Alert: Transitions of care between disability services and hospitals from the NDIS Quality and Safeguards Commission
• Practice Alert: Medicines associated with swallowing problems from the NDIS Quality and Safeguards Commission

• Ensure systems and processes support people to self-report their Aboriginal and Torres Strait Islander status and to record self-identification.
• Ensure all staff engage regularly in cultural safety training.
• Implement the six actions for Aboriginal and Torres Strait Islander Health from the NSQHS Standards.

• Provide flexible service delivery to optimise attendance and help develop trust with individual Aboriginal and Torres Strait Islander people and communities.
• Establish robust communication channels and referral pathways with primary healthcare providers (including Aboriginal Community Controlled Health Organisations [ACCHOs]).
• Where possible, provide outreach services close to home, on Country or in collaboration with ACCHOs or other community healthcare providers.

• Take a collaborative approach to ensure that interventions are suitably tailored to the individual’s personal needs and preferences for care.
• Encourage the inclusion of support people, family and kin or the person’s trusted healthcare provider (such as their ACCHO) in all aspects of care, including decision making and planning treatment and management.
• Engage culturally appropriate interpreter services and cultural translators when this will assist the patient.
• Involve Aboriginal and Torres Strait Islander Health Workers or Aboriginal and Torres Strait Islander Health Practitioners as part of a patient’s multidisciplinary team and involve Aboriginal and Torres Strait Islander Liaison Officers in hospital settings.
• Use culturally and linguistically appropriate materials to aid in communication and discussion, accounting for varying levels of health literacy.