Legal and ethical considerations

In palliative and end-of-life care there are many legal considerations and issues. You will not be expected to have an in-depth knowledge of all these, but you will need a broad understanding of what is allowed and not allowed under Australian laws. Many of the legal issues that arise in providing palliative and end-of-life care are complex and you will not be expected to have the same skills, knowledge and understanding as a qualified lawyer.

However, you will be expected to understand key legal obligations and limitations as they relate to you in your role. A useful strategy for working within the law is to follow your organisation’s policies and procedures, many of which are based on relevant laws and will explain how the law applies to activities that fall within your work role.

Following policies and procedures, ensuring that your work meets industry and practice standards, and following codes of ethics and codes of practice in your work, can all help you to work within the law and to do the right thing. If you are in doubt about what a policy or law means in relation to your work, discuss this with your supervisor or seek further advice.

Laws

Laws may vary across different jurisdictions (commonwealth laws and state or territory laws) so you will need to check the laws for your own state or territory. Generally speaking, if a commonwealth law (one passed by Federal Parliament) overlaps with a state or territory law (one passed by a state or territory parliament), the commonwealth law will take precedence. Legislation relevant to palliative care includes Acts of parliament relating to consent to medical treatment and palliative care, providing medical pain relief, and end-of-life laws. These vary across different states and territories.

Informed Consent to Medical Treatment

State and territory laws in relation to legal consent to medical treatment generally require a person to have the capacity to understand and remember the nature and likely consequences of giving their consent; that is, to understand the nature and likely consequences of the treatment. This means they must be fully informed about the proposed treatment. The person providing the treatment must give them enough information on which to base an informed decision. For consent to be legally valid it must also be voluntary – that is, given freely without coercion, threats or other forms of persuasion, and the person must be adult (over the age of 18 years). In cases where a person does not have legal capacity, a third party such as a guardian may be appointed to provide consent on their behalf. Issues of capacity and consent often come up within the context of giving consent to medical treatments.

Legal Protections for Providing Symptom Relief

A significant legal issue in palliative care is that providing pain relief may also shorten a person’s life. In Australia, while the doctrine of double effect has not yet been tested, it is generally accepted to mean that if providing medication for pain relief hastens a person’s death, then as long as the intention was only to relieve pain, then providing the medication is lawful. If, however, the medication is given with the intention of shortening the person’s life, it is not lawful.

End-Of-Life Laws

The areas of law listed in the resource call-out box below apply to issues in providing palliative care, especially end-of-life care. Although it is unlikely that you as a support worker will be required to administer strong pain medications, it is important for you to have a basic understanding of these issues so that you can work within the law and avoid risk to yourself, your organisation and others. It is also important for you to understand what palliative care can and cannot do to provide pain management and relief so that you can communicate effectively with your clients, their family members and others about options for treatment and care. Depending on your work role and if you have completed training in administering medication, you may be required to administer common pain medications such as paracetamol. You will probably not administer more potent medications such as opiates and other Schedule 8 drugs which require special training and specific procedures for recording, monitoring and storing.

Voluntary Assisted Dying Laws

This is a controversial area of law because it involves strongly held values and beliefs that can stir up strong emotions. Voluntary assisted dying means helping someone who wishes to die to end their life. Strict criteria for voluntary assisted dying must be met. Assisting a person to die is not something that is undertaken in palliative care

The legislation in states where Voluntary Assisted Dying is legal, such as Victoria and Western Australia, includes various safeguards. These may include multiple medical assessments by qualified practitioners, mandatory waiting periods, rigorous documentation, and requirements for reporting to oversight bodies. These safeguards are in place to ensure that the process is transparent, well-documented, and conducted only in cases where all legal criteria are met.

Please note: Voluntary assisted dying laws have been passed in all Australian states but are under review and may not come into effect in some states until 2023. Victoria: The "Voluntary Assisted Dying Act 2017" came into effect in Victoria on June 19, 2019. This law allows eligible adults who are suffering from a terminal illness to request medical assistance to end their life. Strict eligibility criteria and safeguards are in place to ensure the process is carried out carefully. NSW: The Parliament of New South Wales passed the Voluntary Assisted Dying Act 2022 (the Act) on 19 May 2022.

The Act will allow eligible people the choice to access voluntary assisted dying in NSW from 28 November 2023. Western Australia: The "Voluntary Assisted Dying Act 2019" was passed in Western Australia, but it had not yet come into effect. The act provides for voluntary assisted dying for terminally ill adults meeting specific criteria. The exact implementation timeline may have changed. Tasmania: The "End-of-Life Choices (Voluntary Assisted Dying) Bill 2020" was introduced in Tasmania.

As of September 2021, discussions and debates were ongoing, but the legislation had not been finalised. It's important to check for updates on the status of this bill. South Australia: The "Voluntary Assisted Dying Bill 2020" was introduced in South Australia. discussions and debates were taking place, and the final outcome of the legislation might have changed. Queensland: The "Voluntary Assisted Dying Bill 2021" was introduced in Queensland, proposing the establishment of a framework for voluntary assisted dying.

As of September 2021, the bill had not been passed, and the situation may have evolved since then. Australian Capital Territory (ACT): The "Voluntary Assisted Dying Act 2019" came into effect in the ACT on July 1, 2021. This is still under review.

Northern Territory: The Northern Territory had previously legalised voluntary euthanasia in 1995 with the "Rights of the Terminally Ill Act 1995." However, this law was overridden by the Commonwealth "Euthanasia Laws Act 1997," effectively making it illegal. In recent years, there have been discussions about reintroducing voluntary assisted dying legislation in the Northern Territory.

Here is a snapshot of statewide laws and provisions.

State - Victoria

Legislation - Voluntary Assisted Dying Act 2017.

Provision - A person will be eligible to access VAD if he or she: •is aged 18 or over. •is an Australian citizen or permanent resident, ordinarily resident in Victoria, and, at the time of making a first request for VAD, has been resident in Victoria for at least 12 months. •has decision-making capacity, meaning the person can: •understand information relevant to the decision to access VAD, and the effect of the decision, •retain that information to the extent necessary to make the decision, •use or weigh the information as part of the decision-making process, and •communicate the decision and the person’s views and needs about the decision in some way; and •is diagnosed with a disease, illness or medical condition that is: •incurable. •advanced, progressive and will cause death. •expected to cause death within six months (or, in the case of a person with a neurodegenerative disease, illness or condition, within 12 months); and •causing suffering to the person that cannot be relieved in a manner that the person finds tolerable.

State - WA

Legislation - Voluntary Assisted Dying Act 2019.

Provision- A person will be eligible to access VAD if the person: •is aged 18 or over. •is an Australian citizen or permanent resident, and at the time of making a first request for VAD was ordinarily resident in Western Australia for at least 12 months. •is diagnosed with at least one disease, illness, or medical condition that: •is advanced, progressive and will cause death. •will, on the balance of probabilities, cause death within 6 months (or, in the case of a neurodegenerative disease, illness or condition, within 12 months); and •is causing suffering to the person that cannot be relieved in a manner that the person considers tolerable. •has decision-making capacity for VAD, meaning they can: •understand any information or advice that must be provided to the person about a 'VAD decision' (meaning a request for access to VAD, or a decision to access VAD), •understand the matters involved in a VAD decision, •understand the effect of a VAD decision, •weigh up those factors in order to make the VAD decision, and •communicate the VAD decision in some way. •is acting voluntarily and without coercion; and •has an enduring request for VAD.

State - South Australia

Legislation - Voluntary Assisted Dying Act 2021.

Provision - A person is eligible for VAD if they: •are aged 18 or over. •are an Australian citizen or permanent resident of Australia and have been ordinarily resident in South Australia for 12 months before making a first request. •have decision-making capacity in relation to VAD, meaning the person can: •understand the information relevant to the decision to access VAD and the effect of the decision, •retain that information to the extent necessary to make the decision, •use or weigh that information as part of the process of making the decision, and •communicate the decision and the person's views and needs about the decision in some way; and •have a disease, illness, or medical condition that is: •incurable, advanced, progressive, and will cause death. •expected to cause their death within 6 months (or in the case of a person with a neurodegenerative disease, illness, or condition, within 12 months). •are suffering intolerably because of the disease, illness, or medical condition; and •are acting freely and without coercion.

Queensland

Voluntary Assisted Dying Act 2021.

Provision - A person is eligible for VAD if they: •are aged 18 or over. •have a disease, illness, or medical condition that is: •advanced, progressive, and will cause death. •expected to cause their death within 12 months. •are suffering intolerably because of the disease, illness, or medical condition. •have decision-making capacity in relation to VAD, meaning the person is capable of •understanding the nature and effect of decisions about access to VAD, •freely and voluntarily making decisions about access to VAD, and •communicating decisions about VAD in some way. •are acting voluntarily and without coercion. •are an Australian citizen, permanent resident of Australia, have been ordinarily resident in Australia for at least 3 years prior to making the first request, or they are granted an Australian residency exemption; and •have been ordinarily resident in Queensland for 12 months before making a first request, or they are granted a Queensland residency exemption.

State- NSW

Law- The Voluntary Assisted Dying Act 2021.

Provision-A person will be eligible for VAD if they: •are aged 18 or over. •have at least one disease, illness, or medical condition that: •is advanced, progressive and will cause death. •will, on the balance of probabilities, cause death within 6 months (or within 12 months if the person has a neurodegenerative disease, illness, or medical condition). •is causing suffering that cannot be relieved in a way the person considers tolerable. •have decision-making capacity in relation to VAD, meaning the person can: •understand information or advice about VAD that the Act requires be given to the person, •remember that information or advice to the extent necessary to make the decision, •understand the matters involved in a VAD decision, and the effect of a VAD decision, •weigh up the factors referred to above to make a VAD decision, and •communicate a VAD decision in some way. •are acting voluntarily. •are not acting because of pressure or duress (this may include abuse, coercion, intimidation, threats, and undue influence). •have an enduring (i.e. ongoing) request for access to VAD; and •at the time of making a first request: •are an Australian citizen or permanent resident, or have been resident in Australia for at least 3 continuous years; and •have been ordinarily resident in New South Wales for at least 12 months. A residency exemption may be granted if the person has a substantial connection to New South Wales and there are compassionate grounds for granting it.

For more information on state and territory based legislation and provision for voluntary assistive dying click here.

Other Relevant Areas of Legislation

There are other areas of law relevant to providing care using a palliative approach, including workplace health and safety legislation and human rights and antidiscrimination legislation. For an overview of these areas of law please refer to your Fundamentals of Community Services Learner Guide. Laws about capacity to give consent and make informed decisions, and guardianship and administration laws, are also relevant to issues encountered in palliative care. These laws are state and territory based.

It is important to remember that the person has a right to refuse medical treatment, even if this might result in their death. Care workers and professionals are legally obliged to respect this decision, which can raise difficult ethical issues for them if their own values and beliefs conflict with the person’s beliefs and wishes. In this case it would be wise for the worker to seek advice and support from a supervisor or professional.

Dignity of Risk and Duty of Care

Before continuing with this topic review your Fundamentals of Community Services Learner Guide, specifically the content that reference ethical and legal principles, duty of care and dignity of risk. Duty of care is a common law principle that applies to all of us whenever we are in a situation in which our actions might affect others. We have a legal obligation or duty to ensure that we do not cause foreseeable harm to others. A common ethical issue in all areas of community services work is balancing your clients’ rights to make their own choices and decisions (which may include taking risks) with your duty of care towards them. The right to make choices and decisions that may involve risk is referred to as ‘dignity of risk’. We all take risks in our daily lives, and we learn through experiencing the consequences of our actions.

Taking this choice away from someone can limit their learning and violate their right to autonomy. In the context of providing palliative care services, risks may be significant. For example, the risk involved in refusing treatment may include dying. These issues present legal and ethical dilemmas. In deciding ethical issues such as this, we must examine questions about the person’s capacity to make informed decisions. Our duty of care in this instance would be to provide all the relevant information the person needs to make an informed decision and to assess their capacity to make such a decision. Assessing a person’s decision-making capacity can be complex and is often done by a professional such as a psychologist or psychiatrist, so this may not fall within the boundaries of your work role. Cases where a person’s decision-making capacity is in question may be referred to a court. If you are unsure about a client’s capacity to make informed decisions, discuss this with your supervisor.

Some examples include:

Managing Pain and Symptom Control

Support workers have a duty to ensure that clients' pain and symptoms are managed effectively. This may involve coordinating with supervisor, healthcare professionals to administer medications and treatments as prescribed, documenting the situation and taking the steps to manage pain as per the boundaries of their roles.

Another example in terms of dignity of risk is where a client expresses their desire to spend last days at home rather than in the hospice facility. In this situation the support worker should balance the client’s autonomy and right to make decisions about their care with their safety and well-being. While the support worker should respect the clients desire to be at home, it's crucial to assess the risks involved and work collaboratively with client, supervisor, there family, and the healthcare team to create a care plan that addresses their wishes while also ensuring their safety and comfort.

Privacy and Confidentiality

In all areas of community services protecting private and confidential information about your clients is an important principle. Privacy means that organisations must meet the requirements of the Privacy Act 1988, which governs how government agencies and other organisations handle information about their clients. The Act sets out thirteen Privacy Principles which organisations must follow in how they collect, use, store and share information about their clients, and how they keep that information secure. In general, information about clients cannot be shared without their knowledge and consent. This applies in palliative care services as in any other community services.

Privacy and confidentiality are crucial in healthcare. In a workplace when dealing with clients and colleagues if you suspect a violation has occurred the steps you take would be to immediately step away from the situation to avoid inadvertently hearing confidential information, approach the healthcare professionals / colleagues privately and remind them of the importance of maintaining confidentiality and if there is a serious breach of privacy, report the incident to the manager/ supervisor or the appropriate authority according to the facility's policies.

Confidentiality

People with life-limiting and life-threatening conditions and who may be facing the prospect of dying in the foreseeable future will have many sensitive, painful and private issues they may wish to discuss with palliative care providers and support workers. This makes confidentiality an important principle. Confidentiality means that you must not disclose information about your clients to a third party without their informed consent. The only exceptions to this rule are if disclosing the information is necessary to keep the person or someone else safe, or if the information is formally requested by a court of law. Your clients have the right to know what information your organisation collects about their circumstances, health conditions, support needs and progress, what that information is used for, and who has access to it. Maintaining confidentiality is essential in building trust and developing a good professional relationship with clients, especially at a time when they may feel that many other aspects of their lives are beyond their control. Confidentiality applies to verbal information as well as to written information; for example, gossiping about clients with family, friends and colleagues is a breach of confidentiality.

Informed consent

As we stated earlier, informed consent means that the person must have the capacity to understand the nature and potential consequences of consenting to something; they must be an adult (over 18 years), and consent must be given voluntarily. Your role in applying this principle may include providing the information a person needs to give informed consent. For example, if a change is to be made in how support is to be provided (such as a change in personal care routines, or a change in diet and nutrition) you might be responsible for explaining the reasons behind the change or how this will benefit the person, so that they can make an informed decision about whether they agree with it.

Supporting the rights of people receiving palliative care is an essential aspect of supporting their quality of life and of providing services that empower them and respect their individuality and dignity.

Key rights include:

• the right to make choices about treatments, services and supports
• the right to autonomy
• the right to be treated with respect and dignity
• the right to access services that meet their individual needs
• the right to refuse treatment
• the right to make plans for future care through legal documents such as advance care directives
• the right to choose where to die.

For example: Maria, an elderly woman from a culturally diverse background, is receiving palliative care at a hospice facility. She values her cultural traditions and practices deeply. Maria's family informs the hospice support staff that they would like to perform a traditional cultural ceremony for Maria as part of her end-of-life care. The ceremony involves prayers, rituals, and traditional music, all of which hold significant importance in Maria's culture to uphold Cultural Human Rights, the support worker should have an understanding of Maria's cultural background and the significance of the ceremony. This helps in showing respect for her cultural heritage and values, discuss the situation with the healthcare team, explore alternatives, and advocate for Maria’s right to have her cultural needs met while ensuring safety measures are followed.

Watch

Watch the following video about reinventing dignity: Palliative Care as a Human Right.

As in any area of community services work, following relevant policies, procedures and protocols is important. Policies are often based on legislative and ethical requirements. Policies are statements about how a particular issue will be dealt with or how a particular activity (such as a service) will be carried out. For example, a government may develop a policy that states how they intend to deal with a social issue such as domestic and family violence, or mental health or homelessness

Protocols are official procedures or systems of rules that apply to dealing with the issue or carrying out the activity, or specific aspects of the activity, for example, procedures for administering medication, for communicating with clients’ families, or for making decisions about a person’s care and services. Policies and procedures (protocols) may be developed at government level, industry or sector level (for example, health care, aged care, hospice care, the disability sector). They may be developed specifically for palliative care, by a profession such as nursing, physiotherapy, occupational therapy, or by an organisation.

Policies and protocols relevant to providing services within a palliative approach are (or should be) based on the National Standards for Palliative Care, and on standards for the particular sector (for example, aged care standards, disability services standards). New workers in services that use a palliative approach should be given information about relevant policies, protocols and procedures as part of their induction training when they join a service providing organisation.

Here are some of the policies and procedures commonly followed by most organisations:

Palliative Care Policy

Policy and Australian Legislation: Defines the scope of palliative care services and outlines the organisation's commitment to providing compassionate end-of-life care. No specific federal legislation governs palliative care; instead, it is primarily guided by state and territory health regulations. This policy outlines the organisation's commitment to providing palliative care services. It defines palliative care, emphasises the importance of compassionate care, and sets the organisation's goals and objectives for palliative care delivery.

Procedure: The procedure associated with this policy could detail how palliative care services are initiated, assessed, and delivered within the organisation. This policy outlines the organisation's commitment to providing palliative care in accordance with national and state guidelines, emphasising the importance of dignity, comfort, and quality of life for residents. Healthcare providers conducting thorough assessments of patients with life-limiting illnesses, evaluating physical, psychological, social, and spiritual needs. Developing Individualised care plans collaboratively with the patient and their family, setting goals for symptom management, pain relief, emotional support, and spiritual care. Regularly reviewing care plans and updating to ensure patient-centered care is achieved.

Pain Management Policy

• Policy and Australian Legislation: Describes the protocols for pain assessment, management, and documentation in palliative care, ensuring residents receive appropriate pain relief. Medicines, Poisons and Therapeutic Goods Regulation (2019). It outlines the organisation's approach to pain assessment, medication management, non-pharmacological interventions, and monitoring of pain relief.
• Procedures for assessing and managing pain, including the use of controlled substances, in compliance with relevant regulations. assessing pain, prescribing and administering pain medications, monitoring for side effects and adjusting pain management plans as needed.

Safe Medication Management Policy

• Policy and Australian Legislation: The policy outlines the organisation's commitment to safe medication management, emphasising patient safety as the top priority specifying which healthcare facilities or units it applies to and the individuals (e.g., healthcare professionals, support staff) it encompasses. Outline the relevant laws, regulations, and standards governing medication management in Australia. Reference the Therapeutic Goods Administration (TGA), Pharmaceutical Benefits Scheme (PBS), and other applicable authorities
• Procedures for the safe administration, storage, and disposal of medications in palliative care, in accordance with the Poisons Standard and relevant state and territory regulations. Procedures include rigorous medication storage, labelling, and dispensing processes to prevent mix-ups. Healthcare providers verify patient identities, check allergies, and confirm medication orders. Double-checks are performed before administration, and electronic records are maintained for accountability. In case of discrepancies or adverse reactions, protocols for reporting and reviewing incidents are in place. Regular staff training and updates on medication safety guidelines help maintain a culture of safe medication management, reducing the risk of errors and enhancing patient safety in healthcare settings.

Records Management policy

• Policy and Australian Legislation: It defines the organisation's commitment to effective records management. This statement should emphasise the importance of records in supporting the organisation's goals and objectives. Define the scope of the policy and specify which departments, employees, and types of records it applies to. Ensure that all employees understand their responsibilities regarding records management. It Emphasises the organisation's commitment to complying with Australian laws and regulations related to records management, including the Privacy Act, Archives Act, and any industry-specific regulations. Australian Legislation: Privacy Act (1988), Health Practitioner Regulation National Law (2009)
• Procedures for maintaining confidential and accurate records of palliative care provided, ensuring compliance with privacy laws and healthcare professional standards.

Procedures generally include:

• Record Creation: Detail how records are to be created, including naming conventions, metadata requirements, and the use of record templates if applicable.
• Record Classification: Explain the process of categorising records based on their content, purpose, and value. Include a classification scheme or taxonomy if relevant.
• Storage and Retrieval: Describe where and how records will be stored, whether physically or electronically. Provide instructions on how to retrieve records quickly when needed.
• Retention and Disposal: Specify the retention schedules for different types of records and the procedures for their secure disposal, whether through destruction or transfer to an archive.
• Access and Security Controls: Explain the access controls in place, such as user permissions and encryption, to safeguard records from unauthorised access.

Communication policy

• The purpose of this policy is to establish clear guidelines and expectations for effective communication in palliative care settings in Australia. It aims to ensure that all stakeholders are informed, supported, and involved in decision-making processes related to end-of-life care. This policy applies to all healthcare professionals, including physicians, nurses, social workers, and support staff, providing palliative care services in Australia. Effective communication is a fundamental aspect of palliative care. We are committed to providing compassionate, honest, and culturally sensitive communication to patients and their families throughout the palliative care journey.
• Procedure: Outlines the expected communication standards, such as clear and compassionate communication, active listening, and maintaining confidentiality. The key principles that guide communication in palliative care, including empathy, dignity, respect, cultural sensitivity, and person-centered care.

Common communication procedures include:

1. Assessment of Communication Needs: Healthcare professionals will assess the communication needs of patients and their families, considering their emotional state, preferences, and level of understanding.
2. Family Meetings: Scheduled family meetings will be conducted to provide updates on the patient's condition and involve family members in care planning and decision-making.
3. Advance Care Planning: Patients will be encouraged to engage in advance care planning discussions, and documentation of their preferences will be maintained.
4. Interpreter Services: Interpreter services will be readily available to support communication with patients who have limited English proficiency or require assistance with sign language.
5. Documenting Communication: All significant communication, decisions, and patient preferences will be accurately documented in the patient's medical records.
6. Feedback and Continuous Improvement: Regular feedback and debriefing sessions will be conducted among healthcare professionals to identify areas for improvement in communication. Quality Assurance and Continuous

Improvement Policy 

• Policy: Explains how the organisation is committed to providing compassionate, person-centred, and high-quality palliative care services to individuals and their families, recognise the importance of quality assurance and continuous improvement in delivering exceptional care. Ensuring the organisation is dedicated to complying with all relevant Australian standards, regulations, and guidelines. The main objectives are to consistently provide palliative care services that meet or exceed industry standards, to ensure a culture of continuous improvement and learning within the organisation, to promote transparency and accountability in all aspects of palliative care delivery and to monitor and evaluate the quality of palliative care services through regular audits, feedback mechanisms, and staff training and development.
• Procedure: Outlines the specific metrics, processes, and timelines for quality assurance activities.

Commonly followed procedures include:

Quality Assurance Process

• Regularly review and update palliative care protocols, policies, and procedures in accordance with the latest evidence-based practices and guidelines.
• Establish mechanisms for monitoring and reporting adverse events, incidents, and near-misses.
• Conduct regular internal audits and reviews of clinical and non-clinical processes to identify areas for improvement.

Performance Measurement and Reporting

• Develop a set of key performance indicators (KPIs) that align with palliative care goals and objectives.
• Collect data on these KPIs and analyse the results to identify trends, areas of concern, and areas for improvement.
• Regularly report on performance to stakeholders, including patients and their families, staff, and regulatory bodies.

Staff Training and Development

• Provide ongoing education and training to all staff involved in palliative care, ensuring they have the knowledge and skills necessary to deliver high-quality care.
• Encourage staff to participate in professional development and continuous learning opportunities.

Patient and Family Involvement

• Involve patients and their families in the care planning process, seeking their input and feedback.
• Establish mechanisms for soliciting and addressing patient and family concerns and complaints.

Continuous Improvement Initiatives

• Develop and implement action plans to address identified areas for improvement.
• Foster a culture of innovation and continuous improvement by encouraging staff to contribute ideas and solutions.

Compliance and Accreditation

• Ensure that the organisation complies with all relevant Australian regulations and accreditation standards.
• Collaborate with external agencies for accreditation and audits. In the context of palliative care in Australia, this Quality Assurance and Continuous Improvement Policy and Procedure helps maintain the highest standards of care, improve patient and family satisfaction, and ensure that individuals facing life-limiting illnesses receive the best possible support and comfort during their challenging journey.

In summary, policies and procedures are essential tools for organisations to ensure consistency, compliance, efficiency, and accountability in their operations. They provide a framework for decision-making and help organisations achieve their goals while managing risks and maintaining high standards of quality and performance.

Ethical Principles and Issues

Ethics are principles that provide guidance about ‘the right thing to do’. In palliative care work you will need to address a wide range of situations and ethical issues, so having information about relevant codes of ethics and codes of practice will help you to make decisions about the right thing to do.

Key ethical principles in palliative care work include:

• Clinical integrity: This means respecting the person’s values, needs and wishes, providing the best available care to benefit the person, and treating people fairly.
• Respect for persons: This means supporting the person to participate in their care and to make decisions and choices about their treatment and respecting their choices.
• Justice: This means treating everyone involved in the person’s care with fairness.
• Beneficence: This means recognising and responding to the person’s changing needs so that they can live as comfortably as possible and with dignity.

Work Role Boundaries, Responsibilities and Limitations

Working within the boundaries of your job role is particularly important in providing palliative care services because stepping outside your role and undertaking activities that are not part of your role poses serious risks to your clients and to you. Carrying out tasks and activities that you have not been trained to undertake may result in harm to your clients and can put you at risk of legal action. As long as you work within your job role boundaries, and are following your employer’s policies, procedures and directions, then if something goes wrong you are generally protected by your employer’s vicarious liability.

This means that if serious harm occurs, legal action for negligence would be taken against your employer rather than against you personally. If you are unsure about the boundaries of your work role, always check your job description or duty statement, or discuss this with your supervisor, especially if you do not feel confident or competent to carry out a particular task, such as administering medication or discussing a legal issue such as setting up a power of attorney for a client. If your client has needs outside your scope, experience and skills, discuss this with your supervisor and consider referring the client to another service, organisation or professional to meet these needs.

Example

Here are some ethical issues that can arise from working outside your professional and work role boundaries:

• Administering pain medication requires specific training, knowledge. and skills. If you do this without being qualified you may risk causing serious harm to your client, and you may risk legal action for negligence.
• Blurring the lines between professional support and friendship can result in creating false expectations for your client and their family and can mean that you become over-involved and risk stress and burnout. You may also cause your client and others emotional distress and confusion about roles.
• Acting outside your organisation’s policies, procedures and practices can mean that you are not protected by your employer in the event of something going wrong
• Acting outside a relevant code of ethics or code of practice is always unethical and can cause serious harm to your client, your employer and yourself.

Codes of Ethics and Codes of Practice

Codes of conduct, codes of ethics, and practice guidelines and standards provide principles and guidelines that must be followed in providing care. They are often based on laws as well as on ethical principles. Palliative Care National Standards The National Standards provide good practice guidelines for palliative care.

“The National Palliative Care Standards (the Standards) clearly articulate and promote a vision for compassionate and appropriate specialist palliative care. The Standards recognise the importance of care that is person-centred and age appropriate. In particular they point to the requirement for special attention to the needs of people who may be especially vulnerable or at risk. This may include, but is not limited to, Aboriginal and Torres Strait Islanders; asylum seekers; people who have experienced torture and trauma; people who are experiencing homelessness; people living with mental illness, intellectual disabilities or dementia; paediatric populations; people with unique clinical needs; people who are lesbian, gay, bisexual, of transgender experience and people with intersex characteristics (LGBTI), people from culturally and linguistically diverse (CALD) communities, or those experiencing other forms of social or economic disadvantage.”

Palliative Care Australia Codes of ethics and codes of conduct provide guidelines for good practice. Some organisations that provide palliative care services have their own codes of ethics and codes of practice or conduct for their workers. Most of these codes reflects the National Palliative Care Standards. There are nine key palliative care standards:

• Standard 1 Comprehensive assessment of needs Initial and ongoing assessment comprehensively incorporates the person’s physical, psychological, cultural, social, and spiritual experiences and needs.
• Standard 2 Developing the comprehensive care plan The person, their family and carers and substitute decision-maker(s) work in partnership with multidisciplinary teams to communicate, plan, set goals of care and support informed decisions about the comprehensive care plan.
• Standard 3 Caring for carers The needs and preferences of the person’s family and carers and substitute decision-maker(s) are assessed, and directly inform provision of appropriate support and guidance about their role.
• Standard 4 Providing care The provision of care is based on the assessed needs of the person, informed by evidence, and is consistent with the values, goals and preferences of the person as documented in their care plan.
• Standard 5 Transitions within and between services Care is integrated across the person’s experience to ensure seamless transitions within and between services.
• Standard 6 Grief support Families and carers have access to grief support services and are provided with information about loss and grief.
• Standard 7 Service culture The service has a philosophy, strategy, values, culture, structure, and environment that supports the delivery of person and family-centred palliative care.
• Standard 8 Quality improvement Services are engaged in quality improvement and research, based on best practice and evidence, to improve service provision and development.
• Standard 9 Staff qualifications and training Staff and volunteers are appropriately qualified, are engaged in continuing professional development and are supported in their roles

Supporting Choice

One of the key principles in palliative care is that individuals have the right to choose where they die and how they are cared for while they are dying. Having some control over the location and manner of our death can take away much of the fear and distress that surrounds it, for the person and for the people around them.

This is of course not possible for everyone, as death may arrive suddenly and unexpectedly. But in cases where there is sufficient warning, palliative care can help the person to have the ‘best death’ possible.

Planning End-Of-Life Care

Planning end-of-life care when a person knows their life expectation is limited is an essential aspect of having a ‘good death’. One way to do this is for the person’s wishes to be formally documented in an advance care directive. An advance care directive is a formal statement of the person’s wishes for future care, especially around end of-life care. For example, the person may not wish to be resuscitated, or may not wish to be admitted to hospital for medical intervention or may wish to die at home rather than in a care facility. We discuss advance care directives in more detail below.

Palliative care workers and support workers are sometimes asked by clients and their families about advance care directives, advance care planning and end-of-life care. You will not be qualified to offer legal advice on these matters, but you might need to explain how these things work, and to help your clients and their families to discuss these issues. Encouraging your clients to think about these issues can be part of your role, and you should know where to refer them and their families for more information and guidance.

Advance Care Planning

We are all advised to make a will. A will gives directions about how we want our property and assets to be distributed after our death. Making a will is part of what is generally called advance care planning, which also includes making plans for our current and future health care. Expressing and recording our wishes can help others to make decisions about our care when we are no longer able to. This is especially important for people who have chronic or life-limiting illnesses, terminal illnesses, or who may be at risk of dementia. Advance care planning means letting people around you, such as family members, partners, and health care staff, know what your wishes and plans are in relation to your health care in the future.

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Watch this video to understand more about advanced care planning and the questions that matter the most

Advance Care Directives

An advance care directive (sometimes referred to as a ‘living will’) formalises a person’s plans for their future care. It may also nominate someone to make decisions about care if the person is no longer able to. A person can only legally make an advance care directive while they still have decision-making capacity, so it is advisable to consider this as early as possible.

Laws governing advance care directives vary across different states and territories An advance care directive documents a person’s wishes for the care they want to receive if they become unable to communicate their preferences or lose their capacity to make decisions. An advanced care directive often relates to end-of-life care. To make an advance care directive, the person must have legal capacity, To have legal capacity to make an advance care directive the person must be able to understand the nature and potential outcomes or consequences of the directive. Once a person loses this capacity, they are no longer able to make a legal advance care directive.

An advance care directive is a legal document that outlines an individual's preferences and instructions for their medical treatment and care in case they become unable to make decisions for themselves due to illness, injury, or incapacity. It provides guidance to healthcare providers, family members, and caregivers about the individual's wishes regarding medical interventions, end-of-life care, and other healthcare decisions. The primary role of advance care directives is to ensure that an individual's medical and healthcare preferences are respected and followed, even when they are unable to communicate or make decisions.

These directives empower individuals to maintain control over their medical treatment and protect their dignity and autonomy during times of incapacity. An advance care directive is not the same as a power of attorney. A power of attorney appoints someone else to make decisions on behalf of the person. An advance care directive documents the person’s wishes regarding treatment and care and is directed to care and treatment providers, so that if the person becomes unable to communicate or loses the capacity to make decisions, there is a formal record of the person’s wishes.

Advance care directives offer healthcare providers valuable insights into the patient's preferences, enabling them to provide care that is not only medically appropriate but also aligned with the patient's personal beliefs and wishes. The directive may also include nominating a person to make decisions on behalf of the person. Thinking about making an advance directive can be challenging, because it involves confronting the realities surrounding serious illness or injury and end-of-life issues. This makes it very important for the person to have appropriate support, information and access to resources so that they can make good decisions about their wishes. It is also very important that the person’s wishes are expressed clearly and without ambiguity.