Standard 5: Comprehensive Care

Comprehensive care at the end of life

Action 5.15

The health service organisation has processes to identify patients who are at the end of life that are consistent with the National Consensus Statement: Essential elements for safe and high-quality end-of-life care

Intent

Patients with end-of-life care needs are identified as soon as possible to maximise opportunities for appropriate decision making and care.

Reflective questions

How does the health service organisation identify patients who are at the end of their life?

How does the health service organisation ensure that these processes are consistent with the National Consensus Statement: Essential elements for safe and high-quality end-of-life care?

Key task

Use the National Consensus Statement: Essential elements for safe and high-quality end-of-life care to develop a systematic process for identifying patients with end-of-life care needs.

Strategies for improvement

Hospitals

The National Consensus Statement: Essential elements for safe and high-quality end-of-life care sets out suggested practice for health service organisations delivering end-of-life care in settings that provide acute health care. It describes 10 essential elements of care.

The fourth essential element in the consensus statement provides detail about the need to use triggers to recognise when patients are approaching the end of life. Considering the likelihood of a patient dying offers opportunities to identify their needs and preferences, review their goals and comprehensive care plan, and consider how best to align care with the individual’s expressed values and wishes. Routine use of simple trigger tools and questions can prompt clinicians to use their clinical judgement to make a holistic assessment of whether a patient has end-of-life care needs.

Develop processes aimed at identifying patients at two critical points:

  • When death is likely in the medium term (that is, within the next 12 months), but episodes of acute clinical deterioration may be reversible
  • When death is likely in the short term (that is, within days to weeks, or during the current admission), and clinical deterioration is likely to be irreversible.

Work with clinicians to set up processes for identifying patients with end-of-life care needs in the health service organisation. A combination of clinical judgement and research-based algorithms is better at identifying end of life than either strategy alone. The consensus statement includes actions to support the development of processes.

A series of online education modules based on the consensus statement and targeted at clinicians working in hospitals is available from the End-of-Life Essentials website.

Day Procedure Services

This action will not be applicable for most day procedure services. It is unlikely that day procedure services will be providing care to patients at the end of life because of the nature of the service and pre-admission screening.

Refer to hospitals tab for detailed implementation strategies and examples of evidence for this action.

MPS & Small Hospitals

The National Consensus Statement: Essential elements for safe and high quality end-of-life care sets out suggested practice for health service organisations delivering end-of-life care in settings that provide acute health care. It describes 10 essential elements of care.

The fourth essential element in the consensus statement provides detail about the need to use triggers to recognise when patients are approaching the end of life. Considering the likelihood of a patient dying offers opportunities to identify their needs and preferences, review their goals and comprehensive care plan, and consider how best to align care with the individual’s expressed values and wishes. Routine use of simple trigger tools and questions can prompt clinicians to use their clinical judgement to make a holistic assessment of whether a patient has end-of-life care needs.

Develop processes aimed at identifying patients at two critical points:

  • When death is likely in the medium term (that is, within the next 12 months), but episodes of acute clinical deterioration may be reversible
  • When death is likely in the short term (that is, within days to weeks, or during the current admission), and clinical deterioration is likely to be irreversible.

Work with clinicians to set up processes for identifying patients with end-of-life care needs in the health service organisation. A combination of clinical judgement and research-based algorithms is better at identifying end of life than either strategy alone. The consensus statement includes actions to support the development of processes.

A series of online education modules based on the consensus statement and targeted at clinicians working in hospitals is available from the End-of-Life Essentials website.

Action 5.16

The health service organisation providing end-of-life care has processes to provide clinicians with access to specialist palliative care advice

Intent

Clinicians can access advice from specialist palliative care clinicians when planning and delivering end-of-life care.

Reflective question

How do clinicians gain access to specialist palliative care advice?

Key tasks

  • Develop agreements with local palliative care providers to enable access to specialist palliative care advice.

  • Develop processes for clinicians to access specialist palliative care advice.

Strategies for improvement

Hospitals

Although many clinicians may regularly be involved in providing care to patients approaching the end of their life, this is the core business of specialist palliative care clinicians. If a patient has unmet physical, psychosocial or spiritual care needs at the end of life, specialist palliative care involvement can improve quality of life. Gain access to specialist palliative care advice by:

  • Referring a patient to specialist palliative care
  • Seeking a consultation from a palliative care specialist
  • Seeking informal advice to help manage the patient.

If the health service organisation has an on-site specialist palliative care service, work with that service to develop processes to enable clinicians to seek advice. This may include a process for accessing informal advice from a specialist palliative care doctor or nurse, or developing formal referral guidelines.

If the health service organisation does not have a specialist palliative care service, develop agreements to seek advice from, and make referrals to, specialist palliative care providers in nearby health services or in the community.

In some cases, specialist palliative care advice may be limited to telephone support or videoconferencing. Such advice can be a source of primary information or a valuable sounding board to help make decisions about a patient’s management. Develop clear guidelines indicating when and how to seek such advice.

Day Procedure Services

This action will not be applicable for most day procedure services. It is unlikely that day procedure services will be providing care to patients at the end of life because of the nature of the service and pre-admission screening.

Refer to the hospitals tab for detailed implementation strategies and examples of evidence for this action.

MPS & Small Hospitals

Although many clinicians may regularly be involved in providing care to patients approaching the end of their life, this is the core business of specialist palliative care clinicians. If a patient has unmet physical, psychosocial or spiritual care needs at the end of life, specialist palliative care involvement can improve quality of life. Gain access to specialist palliative care advice by:

  • Referring a patient to specialist palliative care
  • Seeking a consultation from a palliative care specialist
  • Seeking informal advice to help manage the patient.

If the health service organisation does not have a specialist palliative care service, develop agreements to seek advice from, and make referrals to, specialist palliative care providers in nearby health service organisations or in the community.

For small hospitals and MPSs, specialist palliative care advice may be limited to telephone support or videoconferencing. Such advice can be a source of primary information or a valuable sounding board to help make decisions about a patient’s management. Develop clear guidelines indicating when and how to seek such advice.

Action 5.17

The health service organisation has processes to ensure that current advance care plans:

a. Can be received from patients

b. Are documented in the patient’s healthcare record

Intent

Patients with an advance care plan receive care in line with their plan if they lack capacity to participate in decision making.

Reflective questions

How does the health service organisation receive advance care plans from patients?

How does the health service organisation ensure that advance care plans are documented in the patient’s healthcare record and that care is provided in accordance with these plans?

Key task

Develop processes to receive, document and provide access to advance care plans.

Strategies for improvement

Hospitals

In this action, advance care planning refers to the process of preparing for likely clinical scenarios near the end of life. Advance care planning can help to ensure that patients’ preferences are known if they are no longer able to speak for themselves, and can reduce the likelihood of unwanted or inappropriate treatment.

The outcome of advance care planning processes may be the documentation of an advance care plan, which may include a formal advance care directive and nomination of a substitute decision-maker. Legislation and policy governing the documentation of advance care directives and nomination of substitute decision-makers vary in each state and territory. The Advance Care Planning Australia website includes information for consumers and clinicians, and links to state and territory resources to guide advance care planning and the documentation of advance care directives.

Develop standardised processes for:

  • Determining whether a patient has a pre-existing and up-to-date advance care plan and, if so, ensuring that a copy is available in the healthcare record
  • Ensuring that advance care plans are readily accessible to clinicians involved in providing care to patients
  • Providing access to documented advance care plans in all areas where care is provided, and in emergency situations.

Advance care plans can be documented on paper or stored electronically in the patient’s digital healthcare record.

Evaluate processes for receiving and acting on advance care plans by using the reportable event system to investigate failures to provide care in accordance with a patient’s advance care plan. Consider adding items relating to advance care planning to the statewide or organisation-wide incident management and investigation systems. For example, in South Australia, items relating to advance care planning have been added to statewide incident reporting systems, including:

  • Delay or failure in obtaining the advance care plan
  • Missing, inadequate or illegible documentation of the advance care plan
  • Communication inadequate or failed between clinicians
  • Communication inadequate or failed between substitute decision-maker/family/carers and clinicians
  • Patient incorrectly identified or advance care plan does not match patient
  • Substitute decision-maker contact delayed or not attempted
  • Dispute between clinicians
  • Dispute between substitute decision-maker/family/carers and clinicians
  • Advance care plan ignored, not followed or not used
  • Planned treatment option unavailable.
Day Procedure Services

In this action, advance care planning refers to the process of preparing for likely clinical scenarios near the end of life. Advance care planning can help to ensure that patients’ preferences are known if they are no longer able to speak for themselves, and can reduce the likelihood of unwanted or inappropriate treatment.

The outcome of advance care planning processes may be the documentation of an advance care plan, which may include a formal advance care directive and nomination of a substitute decision-maker. Legislation and policy governing the documentation of advance care directives and nomination of substitute decision-makers vary in each state and territory. The Advance Care Planning Australia website includes information for consumers and clinicians, and links to state and territory resources to guide advance care planning and the documentation of advance care directives.

Ensuring access to a patient’s advance care plan means that, if a serious complication arises and the patient requires transfer for ongoing care, the advance care plan will be available to direct care if the patient is no longer able to speak for themselves.

Develop standardised processes for:

  • Determining whether a patient has a pre-existing and up-to-date advance care plan during the pre-admission screening and admission process, and, if so, ensuring that a copy is available in the healthcare record
  • Ensuring that advance care plans are readily available in the healthcare record
  • Providing access to documented advance care plans if care is transferred to another service and in emergency situations.

Examples of evidence

Select only examples currently in use:

  • Policy documents that describe the requirements for documenting advance care plans in the patient’s healthcare record
  • Reviews of the use of advance care plans
  • Audit results of healthcare records for documentation of advance care plans
  • Reports of incidents of noncompliance with the use of advance care plans (for example, when advance care plans were unavailable, illegible or not used to guide care when they should have been) and actions taken to deal with these incidents.
MPS & Small Hospitals

In this action, advance care planning refers to the process of preparing for likely clinical scenarios near the end of life. Advance care planning can help to ensure that patients’ preferences are known if they are no longer able to speak for themselves, and can reduce the likelihood of unwanted or inappropriate treatment.

The outcome of advance care planning processes may be the documentation of an advance care plan, which may include a formal advance care directive and nomination of a substitute decision-maker. Legislation and policy governing the documentation of advance care directives and nomination of substitute decision-makers vary in each state and territory. The Advance Care Planning Australia website includes information for consumers and clinicians, and links to state and territory resources to guide advance care planning and the documentation of advance care directives.

Develop standardised processes for:

  • Determining whether a patient has a pre-existing and up-to-date advance care plan and, if so, ensuring that a copy is available in the healthcare record
  • Ensuring that advance care plans are readily accessible to clinicians involved in providing care to patients
  • Providing access to documented advance care plans in all areas where care is provided, and in emergency situations.

Advance care plans can be documented on paper or stored electronically in the patient’s digital healthcare record.

Evaluate processes for receiving and acting on advance care plans by using the reportable event system to investigate failures to provide care in accordance with a patient’s advance care plan. Consider adding items relating to advance care planning to the statewide or organisation-wide incident management and investigation systems. For example, in South Australia, items relating to advance care planning have been added to statewide incident reporting systems, including:

  • Delay or failure in obtaining the advance care plan
  • Missing, inadequate or illegible documentation of the advance care plan
  • Communication inadequate or failed between clinicians
  • Communication inadequate or failed between substitute decision-maker/family/carers and clinicians
  • Patient incorrectly identified or advance care plan does not match patient
  • Substitute decision-maker contact delayed or not attempted
  • Dispute between clinicians
  • Dispute between substitute decision-maker/family/carers and clinicians
  • Advance care plan ignored, not followed or not used
  • Planned treatment option unavailable.

Action 5.18

The health service organisation provides access to supervision and support for the workforce providing end-of-life care

Intent

The workforce has access to support and supervision to alleviate workplace stress associated with delivering end-of-life care.

Reflective question

How does the health service organisation ensure that members of the workforce receive supervision and support when delivering end-of-life care?

Key task

Develop processes to ensure that all members of the workforce providing end-of-life care know how to access supervision and support.

Strategies for improvement

Hospitals

Dealing with death and dying can be challenging for clinicians, and for other members of the workforce such as ward clerks, porters and cleaners. It can add considerably to workplace stress. Chronic unmanaged stress can erode empathy, and could contribute to poorer experiences for patients, carers and families.

Put processes in place to aid access to peer support, mentoring and appropriate clinical supervision.

Develop a policy framework outlining how clinical supervision and support are provided in the health service organisation. Ensure that this includes access to external services for formal clinical supervision, counselling or debriefing after particularly distressing or problematic episodes of care. Provide information to the workforce about access to supervision and support at orientation at the start of employment and during regular refresher training.

Develop resources and training materials to support clinicians to develop skills in self-care, reflective practice and providing peer support to colleagues. Detailed information about stress and burnout relating to the care of the dying, and strategies for prevention, is available from the CareSearch website.

Day Procedure Services

This action will not be applicable for most day procedure services. It is unlikely that day procedure services will be providing care to patients at the end of life because of the nature of the service and pre-admission screening.

Refer to the hospitals tab for detailed implementation strategies and examples of evidence for this action.

MPS & Small Hospitals

Dealing with death and dying can be challenging for clinicians, and for other members of the workforce such as ward clerks, porters and cleaners. It can add considerably to workplace stress. Chronic unmanaged stress can erode empathy, and could contribute to poorer experiences for patients, carers and families.

Put processes in place to aid access to peer support, mentoring and appropriate clinical supervision.

Develop a policy framework outlining how clinical supervision and support are provided in the health service organisation. Ensure that this includes access to external services for formal clinical supervision, counselling or debriefing after particularly distressing or problematic episodes of care. Provide information to the workforce about access to supervision and support at orientation at the start of employment and during regular refresher training.

Develop resources and training materials to support clinicians to develop skills in self-care, reflective practice and providing peer support to colleagues. Detailed information about stress and burnout relating to the care of the dying, and strategies for prevention, is available from the CareSearch website.

Action 5.19

The health service organisation has processes for routinely reviewing the safety and quality of end-of-life care that is provided against the planned goals of care

Intent

Patients receive safe and high-quality end-of-life care.

Reflective questions

What data are collected about the safety and quality of end-of-life care in the health service organisation?

How are these data reviewed to ensure that they align with planned goals of care for the patient?

Key task

Implement processes for evaluating the safety and quality of end-of-life care.

Strategies for improvement

Hospitals

Ensure that evaluation of end-of-life care addresses the safety and quality of the care provided, not just the potential preventability of death. This includes reviewing whether end-of-life care is delivered in line with the planned goals of care.

Capture feedback about the safety and quality of end-of-life care from different perspectives, including nurses, doctors, allied health clinicians, patients, substitute decision-makers, carers and families. Work with clinicians to decide on meaningful measures of the safety and quality of end-of-life care in the health service organisation, such as:

  • The number of expected and unexpected deaths
  • Rates of documented patient goals and preferences for end-of-life care
  • The length of time between recognising that a patient was likely to die and the time of death
  • Adequacy of assessment and management of terminal symptoms
  • Rates of clinical intervention (for example, chemotherapy, dialysis, diagnostic testing, antibiotic use) in the last days of life
  • The number of advance care plans received and developed
  • Carer and family perceptions and experiences of end-of-life care
  • Workforce perceptions and experiences of providing end-of-life care.

Develop strategies for routine data collection about safety and quality relating to both expected and unexpected deaths, and the delivery of comprehensive care at the end of life. This may include using sources such as consumer experience data and health service administration data, and processes such as mortality and morbidity meetings.

Palliative Care Australia’s National Standards Assessment Program (NSAP) has patient and family evaluation tools for health service organisations to use:

Health services that submit their results to Palliative Care Australia receive a report that can be used as evidence to support this action.

The Commission is developing survey and audit tools to help assess the overall safety and quality of end-of-life care in the organisation. More information is available on the Commission's website.

Day Procedure Services

This action will not be applicable for most day procedure services. It is unlikely that day procedure services will be providing care to patients at the end of life because of the nature of the service and pre-admission screening.

Refer to the hospital tab for detailed implementation strategies and examples of evidence for this action.

MPS & Small Hospitals

Ensure that evaluation of end-of-life care addresses the safety and quality of the care provided, not just the potential preventability of death. This includes reviewing whether end-of-life care is delivered in line with the planned goals of care.

Capture feedback about the safety and quality of end-of-life care from different perspectives, including nurses, doctors, allied health clinicians, patients, substitute decision-makers, carers and families. Work with clinicians to decide on meaningful measures of the safety and quality of end-of-life care in the health service organisation, such as:

  • The number of expected and unexpected deaths
  • Rates of documented patient goals and preferences for end-of-life care
  • The length of time between recognising that a patient was likely to die and the time of death
  • Adequacy of assessment and management of terminal symptoms
  • Rates of clinical intervention (for example, chemotherapy, dialysis, diagnostic testing, antibiotic use) in the last days of life
  • The number of advance care plans received and developed
  • Carer and family perceptions and experiences of end-of-life care
  • Workforce perceptions and experiences of providing end-of-life care.

Develop strategies for routine data collection about safety and quality relating to both expected and unexpected deaths, and the delivery of comprehensive care at the end of life. This may include using sources such as consumer experience data and health service administration data, and processes such as mortality and morbidity meetings.

Palliative Care Australia’s National Standards Assessment Program (NSAP) has patient and family evaluation tools for health service organisations to use:

Health services that submit their results to Palliative Care Australia receive a report that can be used as evidence to support this action.

The Commission is developing survey and audit tools to help assess the overall safety and quality of end-of-life care in the organisation. More information is available on the Commission's website.

Action 5.20

Clinicians support patients, carers and families to make shared decisions about end-of-life care in accordance with the National Consensus Statement: Essential elements for safe and high-quality end-of-life care

Intent

Clinicians support consumers, carers and families to make shared decisions about end-of-life care.

Reflective questions

How are clinicians supported to share decisions about end-of-life care with patients, carers and families?

How are clinicians supported to deliver care that aligns with the National Consensus Statement: Essential elements for safe and high-quality end-of-life care?

Key task

Provide guidance for clinicians about using processes for shared decision making in the context of end-of-life care.

Strategies for improvement

Hospitals

The consensus statement sets out suggested practice for health service organisations delivering end-of-life care in settings that provide acute health care. It describes 10 essential elements of care.

Use the actions described in the first essential element of the consensus statement and in the Partnering with Consumers Standard to guide the development of processes to support clinicians to work collaboratively with patients, carers and families, and make shared decisions about end-of-life care.

The patient and the clinical team are essential participants in discussions and decision-making about care at the end of life. Include substitute decision-makers, carers and families according to the patient’s wishes and state or territory legislative frameworks. More information about advance care planning in each state and territory is available from the Advance Care Planning Australian website.

Having conversations about death, dying and the end of life requires compassion, knowledge, experience, sensitivity and skill on the part of the clinicians involved. Provide orientation, education and training for clinicians to understand their individual roles, responsibilities and accountabilities in working with patients, carers and families to make shared decisions about end-of-life care. This may include developing peer support and mentoring programs to help clinicians practise and improve their skills over time. Training, education and mentoring programs should be consistent with the actions described in the consensus statement, and may need to cover several processes and skills, such as:

  • Using organisational shared decision-making processes
  • Supporting shared decision making in patients with fluctuating capacity
  • Strengthening communication skills and preparing for discussions about end-of-life care
  • Developing cultural competence
  • Providing information about organ and tissue donation
  • Documenting the outcome of shared decision-making processes.

Many states and territories have strategies and resources in place to support efforts to improve end-of-life care. Refer to these when planning improvements within the health service organisation.

Day Procedure Services

This action will not be applicable for most day procedure services. It is unlikely that day procedure services will be providing care to patients at the end of life because of the nature of the service and pre-admission screening.

Refer to the hospitals tab for detailed implementation strategies and examples of evidence for this action.

MPS & Small Hospitals

The consensus statement sets out suggested practice for health service organisations delivering end-of-life care in settings that provide acute health care. It describes 10 essential elements of care.

Use the actions described in the first essential element of the consensus statement and in the Partnering with Consumers Standard to guide the development of processes to support clinicians to work collaboratively with patients, carers and families, and make shared decisions about end-of-life care.

The patient and the clinical team are essential participants in discussions and decision-making about care at the end of life. Include substitute decision-makers, carers and families according to the patient’s wishes and state or territory legislative frameworks. More information about advance care planning in each state and territory is available from the Advance Care Planning Australia website.

Having conversations about death, dying and the end of life requires compassion, knowledge, experience, sensitivity and skill on the part of the clinicians involved. Provide orientation, education and training for clinicians to understand their individual roles, responsibilities and accountabilities in working with patients, carers and families to make shared decisions about end-of-life care. This may include developing peer support and mentoring programs to help clinicians practise and improve their skills over time. Training, education and mentoring programs should be consistent with the actions described in the consensus statement, and may need to cover several processes and skills, such as:

  • Using organisational shared decision-making processes
  • Supporting shared decision making in patients with fluctuating capacity
  • Strengthening communication skills and preparing for discussions about end-of-life care
  • Developing cultural competence
  • Providing information about organ and tissue donation
  • Documenting the outcome of shared decision-making processes.

Many states and territories have strategies and resources in place to support efforts to improve end-of-life care. Refer to these when planning improvements within the health service organisation.

Last updated 5th July, 2018 at 08:21pm
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