Partnering with patients in their own care

Charter of rights

A healthcare service’s charter of rights describes the rights that consumers, or someone they care for, can expect when receiving health care. The healthcare service’s charter of rights should be consistent with the Australian Charter of Healthcare Rights (second edition),as illustrated in Figure 4.

In using a charter of rights, your healthcare service ensures that the seven healthcare rights described are upheld in the planning and delivery of health care. This includes informed consent, which is a person’s voluntary decision about their health care that is made with knowledge and understanding of the benefits and risks involved.

Figure 4: Australian Charter of Healthcare Rights (second edition)

Informed consent

‘Informed consent’ is a person’s decision, given voluntarily, to agree to a healthcare treatment, procedure or other intervention that is made:

• Following the provision of accurate and relevant information about the healthcare intervention and alternative options available
• With adequate knowledge and understanding of the benefits and material risks of the proposed intervention relevant to the person who would be having the treatment, procedure or other intervention.

For there to be valid informed consent, the person consenting must:

• Have the legal capacity to consent
• Give their consent voluntarily
• Give their consent to the specific treatment, procedure or other intervention being discussed
• Have enough information about their condition and treatment options, the benefits and risks relevant to them, and alternative options for them to make an informed decision to consent. This includes the opportunity to ask questions and discuss concerns.

• Does your healthcare service use a charter of rights? Is it consistent with the Australian Charter of Healthcare Rights in that it addresses access, safety, respect, partnership, information, privacy and feedback?
• How is this information about healthcare rights communicated to consumers?
• How do people who use your service know what their healthcare rights are?
• How does the workforce use  the charter of rights in the delivery of health care?
• Does your informed consent policy comply with legislation and best practice?
• How does your healthcare service monitor compliance with informed consent processes?

• The healthcare service has adopted the Australian Charter of Healthcare Rights (second edition) in different languages and formats consistent with the community profile
• Charter of rights is displayed in areas that are accessible to the public
• Material showing that patients and carers received information about their healthcare rights
• Feedback from patients and consumers about awareness of the charter of rights
• Feedback from patients about the health care they receive that demonstrates the workforce is applying the charter of healthcare rights in the planning and delivery of care
• Policy documents for informed consent that reference relevant legislation and best practice and consider issues, such as
  • circumstances where consent should be obtained and when it is not required
  • circumstances in which verbal consent is acceptable and when written consent is required
  • requirements for consent to be valid
  • processes for when consent is not provided, or treatment is refused
  • obtaining consent from patients from culturally and linguistically diverse backgrounds
  • the age at which patients can provide consent and consent for minors
• Consent forms that are currently in use or documentation of the patient’s verbal consent where appropriate
• Audit results of patient healthcare records documenting informed consent
• Training documents on informed consent processes.

Australian Commission on Safety and Quality in Health Care: Australian Charter of Healthcare Rights - Using the charter in your health service. Outlines ways in which healthcare services can provide information about health rights and incorporate a charter in their systems. Resources to assist with the adoption of the Australian Charter of Healthcare Rights are available for download.

Australian Commission on Safety and Quality in Health Care: Informed consent. Access fact sheets for healthcare providers and useful links

According to the legislation of every Australian jurisdiction, all adults are presumed to have the capacity to make decisions about their care.

A policy on identifying substitute decision-makers is required for patients whose decision-making capacity is limited or fluctuates. Substitute decision-makers are involved in decisions about a patient’s care.

If a patient does not have the capacity to make decisions about their own care, a substitute decision-maker may be nominated. Examples of substitute decision-makers are a nominated carer, a health attorney, or a person nominated under an enduring power of attorney or guardianship arrangement.

A person has capacity to make a decision about their care if they can:

• Understand and retain the information needed to make a decision
• Use the information to make a judgement about the decision
• Communicate the decision in some way, including by speech, gestures or other means.
• Decision-making capacity can be decision- and situation-specific.³⁵

This means that a person’s capacity can vary at different times, in different circumstances and between different types of decisions. The healthcare service should identify patients who do not have the capacity to make decisions about their own care and should implement a system to identify:

• Patients who do not have the capacity to make decisions about their own health care
• Appropriate substitute decision-makers

• Develop or adopt a policy or procedure for assessing the capacity of patients to make decisions about their own health care and identifying a substitute decision-maker where needed. It should
  • outline the identification process and requirements of the workforce assessing patients
  • outline the appointment process, where applicable
  • comply with relevant state or territory legislation
  • include a list of appropriate decision-makers that is consistent with relevant state and territory legislation and best-practice guidelines
• The policy or procedure should be developed in consultation with the workforce responsible for assessing patient’s capacity to provide consent
• The workforce must be trained in the healthcare service’s policies, procedures and protocols for assessing a person’s capacity to make decisions about their care and engaging substitute decision-makers
• A periodic review of the policy/procedure should be scheduled, to consider the effectiveness and outcomes of the policy

• What processes are in place to support the workforce to identify a patient’s capacity to make decisions about their own care?
• How are the workforce supported to identify and document a substitute decision-maker?

• Observation or documented examples of
  • identifying a patient’s capacity for making decisions about their care
  • identifying a substitute decision-maker, if a patient does not have the capacity to make decisions about their care
  • documenting substitute decision-makers such as next of kin, advocates, people with power of attorney and legal guardians
• Screening and assessment tools, or processes used to identify the patient’s capacity for decision-making
• Audit results of patient healthcare records that identify the patient’s capacity to make decisions, and confirm the identity of the substitute decision-maker, if required
• Audit results of patient healthcare records for compliance with policies, procedures or protocols for determining a patient’s capacity and determining a substitute decision-maker, if required
• Information packages or links to resources about advocacy, power of attorney and legal guardianship that are available for consumers in different formats and languages, consistent with diversity of the patient population and local community

Australian Commission on Safety and Quality in Health Care: NSQHS Standards User Guide for health service organisations providing care for patients with cognitive impairment or at risk of delirium. Provides practical support for healthcare services where specific efforts or additional attention is required to meet the health needs of this patient population, based on the National Safety and Quality Health Service (NSQHS) Standards. The principles and strategies outlined in this resource are broadly applicable.

Australian Commission on Safety and Quality in Health Care: NSQHS Standards User Guide for health services providing care for people with mental health issues. Provides practical support for healthcare services where specific efforts or additional attention is required to meet the health needs of this patient population, based on the National Safety and Quality Health Service (NSQHS) Standards. The principles and strategies outlined in this resource are broadly applicable.

Capacity Australia: Access to resources, tools and training for resources and tools available to assist the workforce assess and support a person’s capacity to make decisions.

Shared decision making is a process in which the healthcare provider and patient jointly participate in making a health decision, having discussed the options, and their potential benefits and risks, and having considered the patient’s values, preferences and circumstances. Where possible, supported decision making enables a patient to remain involved. Substitute decision-making should be used as a last resort for the shortest possible time, and reviewed regularly. It should not be a substitute to appropriate support for the patient making decisions about their own care.³⁶

• Develop processes to involve patients or their substitute decision-maker in planning, communication, goal-setting and decision-making for their current and future care, and review workforce compliance with these processes
• Identify any communication barriers and areas for improvement and implement solutions to overcome these. Consider engaging consumers in this review process by establishing a focus group or seeking feedback from patients
• Encourage healthcare providers to create an environment in which patients feel confident asking questions, and in which healthcare providers respond positively to patient needs; this may involve speaking with patients in a neutral environment, away from the clinical setting
• During the delivery of health care, provide consumers with access to information and resources in a format that meets their needs; this may include
  • general information about their health, condition and healthcare arrangements
  • information about how they can be involved in their own care
  • information that has been developed specifically for them regarding tests and treatment options
  • provide patients with timely and open access to their healthcare record, test results and other clinical information relevant to their care
• Implement ways to support patients self-manage their health care

• How is the workforce supported to partner with patients or their substitute decision-maker to plan, communicate, set goals, and makes decisions about current and future care?
• How does the healthcare service review the use and outcomes of systems and processes for partnering with patients or their substitute decision-maker?
• How does the healthcare service demonstrate patients are supported to be actively involved in their own care?

• A documented process, templates, or other tools to support shared decision-making, care planning and development of goals of care, including supporting communication and interpersonal skills, shared decision-making, and planning current and future care as well as advance care planning, where required
• Documentation in patient healthcare records, or observation that demonstrates:
  • information was provided to patients and carers about care options
  • patients and carers, or substitute decision-makers, were involved in screening and assessment processes, decision-making, developing goals of care and given information about the treatment to be provided
  • a plan for care was developed with patients and the workforce, and provided to patients to review and retain a copy
• Patient information packages or resources about care options are provided to patients in different languages and formats consistent with the diversity of the consumer population and local community
• De-identified examples of patient notes and electronic healthcare record entries which demonstrate the engagement and discussions regarding planning and involvement in care
• Results of patient and carer experience surveys about involvement in shared decision-making and care planning and actions taken to deal with the issues identified.
• Use of technology such as mobile and tablet apps to interact and share information with patients before, during and after their care.

Australian Commission on Safety and Quality in Health Care: Identifying goals of care. Access to a number of resources describing different approaches to identifying goals of care. 

Australian Commission on Safety and Quality in Health Care: NSQHS Standards User Guide for health service organisations providing care for patients with cognitive impairment or at risk of delirium. Provides practical support for healthcare services where specific efforts or additional attention is required to meet the health needs of this patient population, based on the National Safety and Quality Health Service (NSQHS) Standards. The principles and strategies outlined in this resource are broadly applicable.

Australian Commission on Safety and Quality in Health Care: NSQHS Standards User Guide for health services providing care for people with mental health issues. Provides practical support for healthcare services where specific efforts or additional attention is required to meet the health needs of this patient population, based on the National Safety and Quality Health Service (NSQHS) Standards. The principles and strategies outlined in this resource are broadly applicable.

Australian Commission on Safety and Quality in Health Care and Healthdirect Australia: Question Builder. A free web-based tool to help consumers prepare for a visit to the doctor.

Australian Commission on Safety and Quality in Health Care: Top Tips for Safe Health Care. This can help consumers, families, carers and other support people get the most out of their health care.

Good interpersonal and communication skills are critical for healthcare providers to effectively partner with patients in their care. It is important to develop healthcare providers’ skills so they feel confident about approaching consumer partnerships.

Create a supportive professional environment, where partnerships between healthcare providers and patients become the established norm. Strategies may include:

• Engaging senior members of the workforce to act as champions for partnerships between healthcare providers and patients
• Providing enough resources to support healthcare providers to partner with patients in their health care
• Providing access to education and training to equip the workforce to partner with patients in their care. Education and training which develops the workforce’s skills to partner with consumers may include
  • communication and interpersonal skills
  • techniques for shared decision making
  • awareness of individual health literacy and the health literacy environment

• How does your healthcare service support the workforce to form partnerships with patients so that patients can be actively involved in their own care?

• Adopt processes or resources to support the workforce to partner with consumers in their care, including policies for education and training on communication, interpersonal skills, shared decision-making, health literacy and ways to actively involve the patient in their own care
• Schedule of workforce education and training that includes communication and interpersonal skills, shared decision-making and health literacy
• Training documents (for example, syllabus, attendance records and competency assessments) about partnering with consumers in their care
• Audit results of the proportion of the workforce who have completed education and training on partnering with consumers
• Feedback from the workforce about their training needs
• Reviews and evaluation reports of education and training programs

You can access workforce education and training programs and source training from an external provider. Also consider the following resources.

The Health Issues Centre and other state-based health consumer organisations that provide consumer engagement training the health workforce.

Point of Care Foundation: Patient and Family-Centred Care toolkit. Provides a step-by-step method to help the workforce understand the importance of partnering with consumers.