TRIM: 93267

National Consensus Statement: Essential Elements for Safe and High-Quality End-of-Life Care in Acute Hospitals

Consultation draft – January 2014

 Commonwealth of Australia 2014

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Acknowledgements

Many individuals and organisations have freely given their time, expertise and documentation in the development of this paper. In particular, the Commission wishes to thank those who participated in the End-of-Life Care Roundtable Meeting for their time, enthusiasm and advice. The involvement and willingness of all concerned to share their experience and expertise is greatly appreciated.

Contents

Introduction

Purpose

Terminology

Scope

Application of the Consensus Statement

Intended audience

Guiding principles

Essential elements

A) Processes of care

1. Patient-centred communication and shared decision-making

2. Team work and coordination of care

3. Components of care

4. Using triggers to help recognise patients approaching the end of life

5. Responding to concern

B) Organisational prerequisites

6. Leadership and governance

7. Education and training

8. Supervision and support for interdisciplinary team members

9. Evaluation, audit and feedback

10. Systems to support high-quality care

How does this look in practice?

Consultation process

Contributing documents

References

National Consensus Statement: Essential Elements for Safe and High-Quality End-of-Life Care in Acute Hospitals DRAFT – for consultation

Introduction

The Australian Commission on Safety and Quality in Health Care (the Commission) is seeking feedback on the draft National Consensus Statement: Essential Elements for Safe and High-Quality End-of-Life Care in Acute Hospitals (the Consensus Statement). The purpose of the Consensus Statement is to set out the expected standard of care and agreed practice for recognising and responding to people in need of end-of-life care in acute hospitals.

The health care that patients receive in the last years, months and weeks of their lives can help to minimise the distress and grief associated with death and dying for the individual, and for their family, friends and carers. The purpose of this Consensus Statement is to describe the elements that are essential for delivering safe and high-quality end-of-life care to patients who are being cared for in acute hospitals in Australia.

Many Australians spend much of their last year of life going in and out of hospital, and more than half of those who die each year do so in acute hospitals. Although there may be uncertainty about if and when a patient will die, if care is coordinated appropriately, the potential benefits of applying the elements of this Consensus Statement should outweigh the risks of repetition or duplicated effort. Even when treatment aimed at cure is continuing for patients who are identified as approaching the end of life, the interdisciplinary team should work with patients, their families and carers to ‘plan for the worst while hoping for the best’.

This proposed Consensus Statement reflects the views of consumers, experts in the field, and the Australian Commission on Safety and Quality in Health Care. It has been derived from expert experience, published evidence, and developed in partnership with carers and consumers, representatives from public and private hospitals, professional colleges, jurisdictional health departments, and other government agencies.

When applying the elements of the Consensus Statement, it is intended that acute hospitals should consider how to work with external providers – such as residential aged care facilities, specialist palliative care services, general practitioners and social care agencies – to optimise collaboration and the coordination of end-of-life care as patients move in and out of hospital.

Safety and Quality of End-of-Life Care in Acute Hospitals: A Background Paper

A background paper, Safety and Quality of End-of-Life Care in Acute Hospitals, provided the foundation for the development of this Consensus Statement. It is available on the Commission’s web site:

During the preparation of the background paper a series of preliminary consultation interviews and focus groups were held with consumers and carers, interdisciplinary team members, hospital executives and policy makers from across Australia. Quotations from these interviews are used within the draft Consensus Statement.

Purpose

The Consensus Statement sets out suggested practice for the provision of safe and high-quality end-of-life care to patients in acute hospitals. To achieve this, hospitals would need to have systems in place to address all elements in the Consensus Statement. As a consensus statement, the document represents recommended rather than mandatory practice.

The Consensus Statement aims to provide guidance for health services to develop their own systems for delivering safe, timely and high quality end-of-life care in a way that is tailored to their population, resources and available personnel, whilst being in line with relevant jurisdictional or other programs. The Consensus Statement aligns with the National Safety and Quality Health Service Standards but the suggestions for action within it are not mandated.

The purpose of this consultation process (refer to page 36) is to elicit feedback which will allow the Commission to refine and finalise the Consensus Statement, and to identify mechanisms to support its implementation and practical application.

Terminology

There is a lack of clarity and agreement about the meaning ofmany terms that are commonly used in relation to end-of-life care. It is important for all those involved in the provision of end-of-life care to have a common understanding about what such terms mean in practice. Some common terms,and a description of what they mean in the context of this document, are listed in Table 1 below.

Table 1: List of terms

Term / Description
Advance care directive / An advance care directive is a type of written advance care plan that is signed by a competent adult. An advance care directive can record the person’s preferences for future care and appoint a substitute decision-maker to make decisions about health care and personal life management.1
An advance care directive has legal status and is recognised by the common law and relevant legislation (where it exists) in each state and territory in Australia.
Advance care planning / Advance care planning is a process of planning for future health and personal care whereby the person’s values and preferences are made known so they can guide decision-making at a future time when that person cannot make or communicate his or her decisions. Formal advance care planning programs usually operate within a health, institutional or aged care setting after a life-limiting condition has been diagnosed, frequently requiring the assistance of trained professionals. However, people can choose to discuss their advance care plans in an informal family setting.1
Advance care plan / An advance care planning discussion will often result in an advance care plan. Advance care plans state preferences about health and personal care and preferred health outcomes. They may be made on the person’s behalf, and should be prepared from the person’s perspective to guide decisions about care.1
Carers and family / Those who are closest to the patient in knowledge, care and affection. Carers and family may include the biological family, the family of acquisition (related by marriage or contract), and the family and friends of choice (including pets).2
Clinicians / People who provide clinical care and/or medical treatments to patients.
Dying / In this document the term ‘dying’ is used in reference to the terminal phase of life, where death is imminent and likely to occur within days or hours and occasionally weeks. This is sometimes referred to as ‘actively dying’.
End of life / Encompasses the period where a patient is living with, and impaired by, a fatal condition, even if the trajectoryis ambiguous or unknown.2
End-of-life care / For the purposes of this document, end-of-life care includes both care delivered when a patient is imminently dying (sometimes referred to as terminal care or comfort care), and the interventions that may be required by a patient who is living with a life-limiting disease and is likely to die within the next 12-24 months.
End-of-life care is intended to indicate medical treatment, ancillary treatment, and symptom control, and also includes spiritual, psychosocial and family support.
It includes care of the body after death.
Goals of care / The aims for a patient’s medical treatment as agreed between the patient, family, carers and health care team. Goals of care may also include non-medical goals such as returning home or reaching a particular milestone such as participating in a family event.
Medical goals of care may include attempted cure of a reversible condition, a trial of treatment to assess reversibility of a condition, treatment of deteriorating symptoms, or the primary aim of ensuring comfort for a dying patient.
Interdisciplinary team / A team of providers who work together to develop and implement a plan of care. Membership varies depending on the services required to identify and address the expectations and needs of the patient, carers and family. An interdisciplinary team typically includes one or more doctors, nurses, social workers, spiritual advisors, pharmacists and personal care workers. Other disciplines may also be part of the team depending on the needs of the patient and the resources available.2
Limitations of medical treatment / Decisions to limit what treatments will be provided may be made when these will not be of benefit to the patient.
There a number of terms commonly used to describe making limitations to the treatment that will be provided for a patient. Examples of these terms include limitations of medical treatment, withdrawal or withholding of care or treatment, limitations of care, futile treatment and appropriateness of treatment. All of these terms relate to the decisions that are made about what medical treatments will and will not be offered and provided to patients.
These decisions should always be informed by the goals of care, which requires engaging with the patient’s expressed values, as well as expert consideration of whether a particular medical intervention will or will not provide benefit to a patient at the end of life. It also includes consideration of the reversibility of a patient’s condition, the effectiveness of the intervention in terms of its ability to prolong life, and whether attempting the intervention may contribute to reduced or increased suffering at the end of life. Additionally, the decision-makers need to consider the baseline condition of the patient, including their pre-morbid level of physiological reserve, frailty, and level of function or independence prior to hospitalisation.
Decisions to limit medical treatment may avoid prolongation of dying but will not cause a patient’s death. This is quite different from the practice of euthanasia where death is deliberately and purposefully hastened.
Non-beneficial treatment / Non-beneficial treatment refers to interventions that will not be effective in treating a patient’s medical condition or improving their quality of life. Non-beneficial treatment may include interventions such as diagnostic tests, medications, the provision of artificial hydration and nutrition,the provision of intensive care, and medical or surgical procedures.
Palliative care / In this document palliative care refers to care focussed on the relief of symptoms, such as pain and breathlessness, and other problems associated with life-limiting illness. Palliative care is not limited to care of the dying; it may be necessary and useful well in advance of a patient’s death. The primary goals of palliative care are to improve quality of life, optimise comfort and dignity and provide support to the patient, their family and carers.
Palliative care interventions may be provided by the treating team or by specialist palliative care clinicians. All clinicians should be able to provide care consistent with a palliative approach, but specialist palliative care from providers with advanced training and expertise may be required for patients and families with complex care needs at the end of life.
Patient / A patient is the primary recipient of care.
Resuscitation orders/plans / Not for resuscitation (NFR) or do not attempt resuscitation (DNAR) orders or plans relate specifically to decisions to not perform cardiopulmonary resuscitation in the event of a patient having a cardiac or respiratory arrest. In some organisations, decisions about other specific treatments may also be listed as part of a resuscitation plan (for example, decisions to call a medical emergency team or transfer a patient to intensive care in the event that they deteriorate). Unless specifically excluded in the resuscitation plan, all other treatments and care should be provided in accordance with usual practice and the plan of care.
Substitute decision-maker / A substitute decision-maker is a person appointed or identified by law to make substitute decisions on behalf of a person whose decision-making capacity is impaired. Substitute decision-makers have legal authorityto make these decisions, though the relevant legislation varies from state to state.
A document that appoints a substitute decision-maker to make health, medical, residential and other personal decisions (but not financial or legal decisions) is considered to be an advance care directive.
A substitute decision-maker may be appointed by the person, appointed for (or on behalf of) the person, or identified as the default decision-maker by Guardianship Acts around Australia. More than one substitute decision-maker may be appointed under an advance care directive.1
A preferred decision-maker may be nominated by a patient in a document such as an advance care plan but this in and of itself does not necessarily grant legal authority for this person to be a substitute decision-maker.

Scope

This Consensus Statement relates to situations where end-of-life care is indicated for adultswho are identifiably approaching the end of their lives.

There are two particular periods of time near the end of life where it may be particularly opportune to apply the elements of this Consensus Statement:

  1. When a patient is likely to die in the medium term (i.e. within the next 12-24 months)but there is potential for reversibility if episodes of acute clinical deterioration occur.
  2. When a patient is likely to die in the short term (i.e. within days to weeks or duringthe current hospital admission) and any clinical deterioration is likely to be irreversible.

Figure 1 illustrates the type of end-of-life care interventions that might be needed as a patient approaches the end of life.

Figure 1: Opportunities to provide end-of-life care interventions in acute hospitals

Predicting prognosis and the timing of dying can be difficult. For some acute hospital patients it may be difficult to distinguish clinical deterioration that is reversible from deterioration which is irreversible and part of the normal dying process. In such cases, it may be appropriate to consider a time-limited trial of treatment to assess the reversibility of a patient’s deterioration.

It should be acknowledged that the process of dying is not always straightforward and it is likely that aspects of care will need to be revisited as a patient’s condition changes. For example, psychosocial and spiritual care needs may change over time and should therefore be repeatedly assessed.

In addition, some elements of the Consensus Statement may only be relevant at particular points in time while others are applicable across the whole patient journey. For example, some aspects of advance care planning may no longer be as relevant when a patient is actively dying, but good symptom control remains relevant during both terminal care and for quality of life over the longer term.

The Consensus Statement applies in all types of acute hospitals, from large tertiary hospitals, to small district and community hospitals. It applies to inpatient acute careandrehabilitation settings.It does not apply to situations where patients are primarily being treated by a specialist palliative care team. There are systems and structures in place in palliative care that may vary significantly from those within the general acute hospital and there are already a range of policies, processes and standards in place within the palliative care sector that support the delivery of high-quality, patient-centred end-of-life care.

This document does not relate to the practices of euthanasia or physician-assisted suicide, which involve the administration of medications in the deliberate attempt to hasten death.

Application of the Consensus Statement

The purpose of this Consensus Statement is to outline aproposed national approach to end-of-life care in acute hospitals. It is intended to be applied with careful consideration of the interface between clinical deterioration and end-of-life care. There are significant overlaps between this document, the National Consensus Statement: Essential Elements for Recognising and Responding to Clinical Deterioration, and National Safety and Quality Health Service (NSQHS) Standard 9. Therefore, systems, processes and structures for delivering safe and high-quality end-of-life care should work in synergy with those for recognising and responding to clinical deterioration.

This Consensus Statement provides high level guidance about the principles and actions that should shape end-of-life care in acute hospitals. There are many other national, jurisdictional, professional and local frameworks, guidelines, policies, directives and procedures related to end-of-life care (for example, the National Framework for Advance Care Directives outlines best practice for the use and application of advance care directives). This Consensus Statement is not intended to provide detail about the specific needs of particular populations of patients.