Information for clinicians - Psychotropic Medicines in Cognitive Disability or Impairment Clinical Care Standard

What the standard says 

A person receives health care that is driven by their individual preferences, needs and values, and that upholds their personal dignity, human rights and legal rights. The person is supported to be an active participant in making informed choices about their care, together with their family, support people or nominated decision‑maker as appropriate.

What this means for clinicians

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.

Cultural safety and equity 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.

What the standard says

If psychotropic medicines are being considered, the person – and their family, support people or nominated decision‑maker as appropriate – is informed about the reason, intended duration, and potential benefits and harms of treatment. If use of a psychotropic medicine is agreed, informed consent is documented before use. In an emergency, or if the person does not have capacity to make a decision even with support, processes are followed in accordance with relevant legislation.

What this means for clinicians

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.

What the standard says

A person with behaviours of concern is initially assessed for immediate risks to their safety and others. Further assessment is undertaken to identify clinical, psychosocial and environmental causes of the behaviours, and to understand the context in which they occur. Assessment is carried out by suitably trained individuals, and considers existing plans to support the person’s care and information from others who know the person well.

What this means for clinicians

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.

What the standard say

Non‑medication strategies are used first‑line and as the mainstay of care when responding to behaviours of concern. The choice of strategies is individualised to the person, and is documented and communicated to all those involved in their care.

What this means for clinicians

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.

What the standard says

If a person has a plan to support their behaviour, it is used to inform and support their care. The person’s response to care provided under the plan – including any use of psychotropic medicines – is continually assessed, documented and communicated to inform regular updates to the plan and prescribing decisions.

What this means for clinicians

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.

What the standard says

Psychotropic medicines are considered in response to behaviours of concern only when there is a significant risk of harm to the person or others, or when the behaviours have a major impact on the person’s quality of life and a reasonable trial of non‑medication strategies has been ineffective. Psychotropic medicines are also considered when a mental health condition has been diagnosed or is reasonably suspected following a documented clinical assessment. The reason for use is clearly documented in the person’s healthcare record at the time of prescribing.

What this means for clinicians

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.

What the standard says

A person’s response to psychotropic medicines is regularly monitored and reviewed according to the person’s individual needs and goals of treatment. The benefits and harms of treatment, and the potential for dose adjustment or cessation are considered at each review. The outcome is documented and communicated, along with the timing of the next review.

What this means for clinicians

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.

What the standard says

When the health care of a person is transferred, information about their ongoing needs is shared with the person, their family or support people and the healthcare and service providers continuing their care. This includes information about behaviour support plans or other strategies. If psychotropic medicines are prescribed, the reason for use, intended duration, timing of last administration, and plans for monitoring and review are documented and communicated to support the person’s ongoing care.

What this means for clinicians

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.