PRACTICE GUIDELINES
TITLE: End of Life Care
TARGET AUDIENCE
This guideline is intended for clinical staff, particularly medical and nursing staff, involved in early
intervention palliative care discussions and patient support caring for someone with a life limiting illness
PURPOSE
The purpose of this document is to outline an approach to providing care and medical treatment for patients
towards the end of patient’s life.
The goal is always to maintain the patient’s dignity and comfort from diagnosis inclusive of patient centered
care and care that encompasses social, spiritual and cultural needs.
This guideline supports clinical staff to:
1. Recognise patients who are at risk of deteriorating and dying
2. Initiate discussion with the patient and/or family about the plan of care and medical treatment in a timely
and sensitive manner
3. Make decisions about treatment to be provided in the event that the patient’s clinical condition suddenly
deteriorates
4. Understand the Advance Care Planning process, including where to search for relevant documents and
how to initiate discussions so that patients can be seen and supported with Advance Care Planning out
in the community
5. Document and effectively communicate the plan of care across the care continuum
6. Develop a plan of care in collaboration with the patient and/or family that promotes the patient’s values,
is clinically appropriate and delivers care to the dying patient to ensure a comfortable and dignified
death
7. Navigate the process for the complex patient at the End of Life where there are many clinical teams
involved
DEFINITIONS
To be able to provide high quality care and medical treatment at the End of Life it is important to understand
the progressive phases which can contribute and the different terminology.
The following definitions are taken from the Australian Commission on Safety and Quality in Health Care
Background Paper on End of Life Care in Acute Hospitals (2013), National Consensus Statement: Essential
Elements for Safe and High Quality End-Of-Life Care in Acute Hospitals (2014), the Department of Health
Best Care for Older People Everywhere Toolkit (2012), Advance Care Planning: A strategy for Victorian
Health Services (2014) and the Medical Treatment Planning and Decisions Act (2016):
Advance Care Directive
A document that sets out a patient’s binding instructions or preferences and values in relation to the medical
treatment of that patient in the event that the patient does not have decision-making capacity for that medical
treatment. An advance care directive may contain either or both of the following:
(a) an instructional directive.
(b) a values directive.
Advance Care Planning
Advance care planning is the process of planning for future health and personal care whereby the patient’s
values, beliefs and preferences are made known so they can guide decision making at a future time when
that patient cannot make or communicate his or her decisions.
End of Life
PRACTICE GUIDELINE
TITLE: End of Life Care
That part of life where a patient is living with, and impaired by, an eventually fatal condition, even if the
prognosis is ambiguous or unknown.
End of Life Care
End of Life Care combines the broad set of health and community services that care for the population as
they approach the end of life.
Eventually fatal/terminal condition
A progressive condition that has no cure and that can be reasonably expected to cause the death of a patient
within a foreseeable future. The definition is inclusive of both malignant and non-malignant disease processes
and of the ageing process. A patient has an eventually fatal condition if their death in the foreseeable future
would not be a surprise.
Hospice
A hospice is a comprehensive service provided to people living with and dying from an eventually fatal
condition. This may include inpatient care, respite care, and End of Life Care for people who are unable to die
at home. Hospices may also offer day care facilities and community home visiting teams.
Medical Treatment Decision Maker (MTDM)
The first person in the list below who is reasonably available and willing and able to make a medical treatment
decision on behalf of an adult patient without decision-making capacity (NB: there can only be one MTDM at a
time):
• a person appointed by the patient under the Medical Treatment Planning and Decisions Act 2016
• a guardian appointed by VCAT who has the power to make medical treatment decisions
• the first of the following who has a close and continuing relationship with the patient:
• the spouse or domestic partner of the patient
• the primary carer of the patient
• he oldest adult child of the patient
• the oldest parent of the patient
• the oldest adult sibling of the patient.
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.
Palliation
To palliate is to alleviate a symptom without curing the underlying medical condition. The term is used widely
in health care to refer to treatments or interventions (including surgical) that are focused on alleviation of pain
or other symptoms and is not necessarily limited to care provided for eventually fatal conditions.
Palliation in relation to End-of-Life care is the relief of symptoms and suffering to help a patient feel more
comfortable and to improve the quality of their life. Palliation of symptoms is a key goal of care for both Endof-Life and palliative care.
Palliative care
Palliative care is care provided for a patient living with, and dying from, an eventually fatal condition and for
whom the primary goal is quality of life.
Terminal care
Terminal care is care provided in a patient’s final days or weeks or hours of life, when death is imminent.
PRACTICE GUIDELINE
TITLE: End of Life Care
GUIDELINE
INTRODUCTION
Patients who are approaching the end of their life need high-quality care and medical treatment to support
them to live as well as possible until they die, and to die with dignity. In order to be able to provide this
treatment and care it is important to understand the last phases of life in patients with life-limiting illnesses.
Most patients will have multiple interactions with healthcare providers towards the end of their life. Although
there may be uncertainty about the timing of a particular patient’s decline, there are a number of points where
patients with life-limiting conditions commonly interact with acute health care systems. Actively identifying
these points offers an opportunity for patients and their carers to participate in planning care for the end of
their lives.
RECOGNISING KEYTRANSITIONS IN THE END OF LIFE CARE
Palliative care is not only relevant to the last weeks of life. Best practice for supportive and palliative care is
for a phased transition, with palliative care being offered alongside active treatment for a life limiting illness.
The diagram below supports this concept and the shift toward appropriate care near the End of Life.
Effective End of Life Care requires timely identification of patients at risk of dying. This should prompt
clinicians to initiate proactive and holistic needs assessment, shared decision making about goals of care,
and anticipatory care planning. The advantages of these timely discussions and planning can include:
• Addressing legal issues such as Wills and the appointing of Enduring Powers of Attorney and a
Medical Treatment Decision Maker (MTDM) whilst patients remain physically and cognitively capable.
• Allowing time for patients and families to discuss choices in terms of treatments, place of care and
preferred location of death and ideally documenting these treatment decisions in an Advance Care
Directive.
• Enabling patients to reflect on their life goals.
• Enabling patients to consider reconciling important relationships in their life.
Many of these tasks can contribute to a sense of completion and/or a ‘life well-lived’, making the eventual
acceptance of death and dying somewhat easier. There will be important physical, social, spiritual,
PRACTICE GUIDELINE
TITLE: End of Life Care
psychological, and cultural considerations for some patients. If in doubt, assistance may be sought from the
Palliative Care team.
IDENTIFYING PATIENTS WHO ARE REACHING THE FINAL DAYS OF LIFE – TERMINAL PHASE
The ability to make an accurate and timely diagnosis of dying is a core clinical skill based on careful
assessment. To improve the transition to terminal care, clinicians need to be identifying patients who are
reaching the final days of life.
Clinical indicators of dying may include:
• Change in functional status resulting in inability to self-care
• Having difficulty taking oral fluids or not tolerating artificial feeding/hydration
• No longer able to take oral medication
• Increasingly drowsy with no reversible cause identified
The clinician should consider if the patient’s condition was expected to deteriorate in this way and if further life
prolonging treatment is inappropriate for any of the following reasons:
• Patient has refused further treatment
• Patient has a valid advance care directive refusing medical treatment (or refusal of treatment
certificate completed prior to 12 March 2018)
• A MTDM has refused further treatment on the patient’s behalf
• Further treatment is likely to be futile or non-beneficial
If the patient is meeting any of the criteria above, then this should prompt multidisciplinary team discussion,
led by senior medical staff, to optimise care in the last days of life.
Whilst considering the clinical indicators of dying and whether the deterioration was expected, the clinician
should also consider all potentially reversible causes of deterioration.
• Infection (eg, urine, chest, cholangitis, peritonitis, neutropenia)
• Dehydration
• Biochemical disorder (calcium, sodium, blood sugar)
• Drug toxicity (eg, opioids, sedatives, alcohol)
• Intracranial event or head injury
• Bleeding or severe anaemia
• Hypoxia or respiratory failure
• Acute renal impairment
• Delirium
• Severe constipation
• Depression and other mental disorders where suicidality is a feature
The appropriateness of treating these conditions must be assessed for each patient on an individual basis,
taking into account for example, the burden of treatment, the symptomatic burden of the condition, the likely
efficacy of each treatment and whether the patient has previously expressed wishes in regard to this situation.
DECISION MAKING AROUND TREATMENT LIMITATION
The changing context of treatment limitation decisions at the End of Life.
PRACTICE GUIDELINE
TITLE: End of Life Care
The decisions regarding medical treatment at the End of Life can be very difficult given the complexity of
some illnesses, prognostic uncertainties, and the varied expectations and opinions of all involved, including
the patient, family, and health care providers.
As a patient’s health deteriorates and the focus of medical treatment is no longer one of cure,
decisions may be made to withhold or withdraw certain treatments. These are primarily medical
decisions. Health practitioners have an obligation to not provide futile or non-beneficial medical
treatments. Medical treatment is considered futile or non-beneficial if it offers no reasonable hope of
recovery or improvement or because a patient is permanently unable to experience any benefit.
Where there is agreement from all medical staff involved that a treatment is not medically beneficial, such
treatment should not be offered to the patient. It may be appropriate to discuss the decision to withhold or
withdraw treatments that are not medically appropriate, with the patient and/or their family. This discussion
should involve an explanation as to why they are not being offered.
Medical treatment decisions should also be based on what the patient would want in the circumstances. A
patient’s preferences, values and personal and social wellbeing should direct decisions about the patient’s
medical treatment. If a patient no longer has decision-making capacity, then the health practitioner must make
reasonable attempts to locate an advance care directive and a MTDM.
Treatment should not be offered to a patient when:
• It is clinically judged that the patient will not survive the proposed treatment
• The burdens of treatment outweigh any potential benefits
• The treatment would not be successful in producing the desired clinical effect
• The treatment may be successful in producing a clinical effect but fail to achieve important patient
goals
• An informed and competent patient is refusing the treatment
OR
• In the case of a patient without decision-making capacity, a valid instructional directive refusing the
medical treatment is available or the MTDM refuses the treatment on behalf of the patient.
Treatment that should be offered to all patients includes:
• Palliative care, reasonable medical treatment for the relief of pain, suffering and discomfort, and the
reasonable provision of water (this does not include artificial nutrition and hydration provided by
means of a Percutaneous Endoscopic Gastrostomy or Nasogastric Tube).
AND
• Usual care which includes positioning for comfort, mouth care, personal hygiene, bathing, offering
food and fluids by hand, measures to maintain dignity.
COMMUNICATION
Patient/ Medical Treatment Decision Maker (MTDM) and Treating Team
Patients, their MTDM and their families place a great degree of importance on receiving clear, honest, timely
and frequent communication from the health care team as they near the end of their life. Early, sensitive and
proactive communication which aims to support shared decision making improves satisfaction with health
care at the End of Life. This will often prevent challenging differences of opinion regarding health care
decisions and will minimise future trauma for families/friends.
PRACTICE GUIDELINE
TITLE: End of Life Care
Disagreements can arise between the patient or their MTDM, their family and health practitioners regarding
treatment limitation decisions, or about other aspects of End of Life Care. These differences of opinion can
usually be addressed through skilful communication which should be clear, honest, sensitive and regular.
Differences of Opinions with Families
The wishes of the adult patient with decision-making capacity are paramount. If the patient has expressed
wishes regarding active treatment or refusal of treatment prior to loss of decision-making capacity and these
wishes are known, then these prevail over the wishes of the family.
Requests by patient or MTDM to commence or continue treatment that is not medically indicated
At times a patient or their MTDM requests a test or intervention that appears unreasonable or inappropriate to
the treating team. Such circumstances may include.
• where the patient’s condition continues to deteriorate despite optimal treatment
• where the treatment would not be successful in producing the clinical effect
• where the treatment might successfully produce a clinical effect but still fail to achieve important
patient goals such as independence from life-support devices, discharge from hospital, or recovery of
consciousness
• where the patient/MTDM are requesting that “everything is done” because they have an unrealistic
expectation about what treatments can achieve or they are not ready to accept the patient’s
inevitable death.
A focus should be kept on the patient. All requests for continuing treatment should be given due consideration
before decisions about the appropriateness of treatments are made. The treating team need to be clear why
they feel the treatment is not medically indicated, and other doctors involved in the patient’s care should be
consulted. If required, or requested by a patient or their MTDM, a second opinion should be obtained.
The treating team should initially endeavour to explain to the patient or MTDM why they think the desired test
or treatment is inappropriate. It is essential that clear, honest, sensitive and regular communication is
established and maintained with the patient or MTDM. The consultant is responsible for maintaining contact
with the patient and MTDM and ensuring that they provide regular updates of the patient’s condition. It is not
appropriate to delegate this responsibility to junior medical staff who may not be skilled in handling these
conversations. It is advisable to limit the number of health practitioners that are communicating directly with
the patient/MTDM in an attempt to avoid giving conflicting messages and creating mistrust.
Requests by patients or MTDM for cessation of treatment that is thought to be medically indicated
Unrelieved pain, suffering or depression may influence a patient’s request for treatment cessation. Under
such circumstances, it is important to discuss the treatment with the patient and identify why the treatment is
not wanted. If there are concerns regarding the patient’s mental state, degree of pain, or other symptoms then
advice from other appropriate professionals is required (psychiatrist, pain specialist, palliative care specialist).
It is also important to understand the patient’s underlying disease trajectory and the likely future prognosis.
It may be appropriate to negotiate with the patient an agreed plan of continuing treatment and further
discussion in the near future. However, if the patient is competent, is fully informed and continues to request
to not receive treatment or to cease treatment then this must always be respected. If the patient no longer has
decision-making capacity but has previously completed a valid instructional advance care directive (or a
Refusal of Treatment Certificate completed prior to 12 March 2018 that applies to the current condition)
requesting not to receive a medical treatment, then this must be respected and implemented. The MTDM can
also refuse medical treatment on behalf of a patient without decision-making capacity, provided the decision
is in accordance with the patient’s preferences and values.
If a MTDM refuses clinically indicated treatment in circumstances where the patient’s preferences and values
are not known, the health practitioner must notify the Public Advocate, who will review the reasonableness of
this decision.
PRACTICE GUIDELINE
TITLE: End of Life Care
Minimising conflict at End of Life
Strategies that clinicians can employ to help prevent conflict include:
• Ensuring clear, honest, sensitive and regular communication is maintained with the patient or
MTDM and family –
• Delivering information to the patient/MTDM/family about prognosis and the goals of care that is
honest, timely and sensitive, to help the patient/family to prepare for death
• Ensuring clinical consensus, before conveying information to the patient/MTDM/family. This
requires involved health practitioners to communicate with each other prior to communicating with
the patient or their MTDM or family
• Ascertaining the patient’s values and preferences for undergoing life prolonging treatments, before
they are too unwell to communicate
• Early family meetings to be arranged and attended by all relevant hospital staff. Clinicians should
meet prior to the family meeting to ensure consistency of information is provided to the
patient/MTDM/family.
• Ensuring senior clinical decision makers are actively involved early in the process
• Allowing time for family to come to terms with information and to make decisions. Additional family
meetings may be warranted to clarify and resolve outstanding issues.
• Ensuring identification of the appropriate MTDM
• Taking responsibility for any medical decisions to limit treatment
• Offering a second opinion may also be appropriate if the patient/MTDM/family are displaying
anxieties or uncertainties regarding diagnosis or prognosis. It is the responsibility of the senior
treating clinician to facilitate any second medical opinion. This opinion should be from a clinician
with expertise relevant to the patient’s condition and who is demonstrably independent from the
treating team. In some circumstances it may be helpful for a further opinion to be obtained from a
non-Alfred Health affiliated consultant.
• Acknowledging the importance of spirituality, religion, and culture and how they may impact on a
patient’s End of Life Care.
• If a dispute with the patient/MTDM/family cannot be resolved with consensual agreement or with
acceptance that the doctors are in a position to make a decision regarding the limitation of medical
treatment based on what is medically beneficial, it is appropriate to inform the Chief Medical Officer
and to seek advice regarding the appropriate next step. If this stage has been reached it is
important to review the decisions that have been made by the treating team and the evidence to
support these decisions and to ensure that all pertinent information has been carefully documented.
MANAGING END OF LIFE CARE
Advance Care Planning
Advance Care Planning (ACP) helps ensure a patient’s beliefs, values and preferences are made known to
guide future healthcare in the event that the patient is unable to make or communicate their own decisions.
ACP enables individuals to formally record their wishes in the following ways;
• Appoint a Medical Treatment Decision Maker (MTDM)
• Complete an Advance Care Directive that sets out their;
• preferences and values (values directive)
• binding instructions (instructional directive)
PRACTICE GUIDELINE
TITLE: End of Life Care
Patients who have decision-making capacity should be offered the opportunity to complete ACP. Assistance
can be provided through the ACP program and a referral should be made as required. For details on how to
introduce and refer a patient for ACP refer to Advance Care Planning Guideline.
If a patient no longer has decision-making capacity and a valid advance care directive is available, then the
health practitioner must determine if it contains an instructional directive, a values directive, or both. If there is
an instructional directive that is relevant to the proposed medical treatment, this must be relied upon as
though the patient had capacity and was making the decision. This means that if the patient refuses the
proposed medical treatment in an instructional directive, the health practitioner must not provide that
treatment. If there is only a values directive (or the instructional directive is not directly relevant), the health
practitioner must turn to the patient’s MTDM to obtain consent for any medical treatment.
Palliative Care
Palliative care provides specialised, co-ordinated medical, nursing and allied health services for people with
serious illness, whatever the diagnosis. It strives to provide physical, psychological, emotional and spiritual
support for patients and their carers in order for them to achieve the best possible quality of life.
Palliative care:
• Provides relief from pain and other distressing symptoms
• Affirms life and regards dying as a normal process
• Integrates the psychological, emotional, spiritual and social aspects of patient care
• Offers a support system to help patients live as actively as possible until death
• Supports families during the patient’s illness and in their own bereavement
• Review of patients in the last days of life to assist with implementation of the ‘Care of the Dying
Patient Plan’
PRACTICE GUIDELINE
TITLE: End of Life Care
REFERENCES
Austin Health. (2011) Life Prolonging Treatment Policy, Melbourne: Austin Health
Australian Commission on Safety and Quality in Health Care (2014) National Consensus Statement: Essential
Elements for Safe High-Quality End-of-Life Care in Acute Hospitals- Consultation draft. Sydney: ACSQHC
Australian Commission on Safety and Quality in Health Care. (2013) Safety and quality of end-of-life care in
acute hospitals: A background paper. Sydney: ACSQHC
Australian Medical Association (2007) Position statement on the role of the medical practitioner in end of life
care. Retrieved April 12, 2013, from https://ama.com.au/position-statement/role-medical-practitioner-end-lifecare-2007
Boyd K. & Murray S. (2010) Recognising and managing key transitions in end of life care, British Medical
Journal, 341: 649-652
Department of Health (2014) Advance care planning: have the conversation. A strategy for Victorian health
services. Melbourne: Department of Health
Department of Health (2012) Best care for older people everywhere toolkit – The toolkit 2012. Melbourne:
Department of Health
PRACTICE GUIDELINE
TITLE: End of Life Care
HOME HELP/PERSONAL CARE
Home help services are available for either as a funded government assisted service or private cost, please consult with social work
and/or the patient’s local council for further assistance
COMMUNITY NURSING
The Royal District Nursing Service collaborates with palliative care services across the state, contact them within the metropolitan
region or individual rural community nursing services in your patient’s locality
PLACEMENT TO A RESIDENTIAL AGED CARE FACILITY
The process of (permanent or respite) placement of a palliative patient is one that requires assessment, co-ordination and
communication. Community Palliative Care can support clients and their families with My Aged Care regarding referrals for long
term, short term and respite care.
TARGET AUDIENCE
This guideline is intended for clinical staff, particularly medical and nursing staff, involved in early
intervention palliative care discussions and patient support caring for someone with a life limiting illness
PURPOSE
The purpose of this document is to outline an approach to providing care and medical treatment for patients
towards the end of patient’s life.
The goal is always to maintain the patient’s dignity and comfort from diagnosis inclusive of patient centered
care and care that encompasses social, spiritual and cultural needs.
This guideline supports clinical staff to:
1. Recognise patients who are at risk of deteriorating and dying
2. Initiate discussion with the patient and/or family about the plan of care and medical treatment in a timely
and sensitive manner
3. Make decisions about treatment to be provided in the event that the patient’s clinical condition suddenly
deteriorates
4. Understand the Advance Care Planning process, including where to search for relevant documents and
how to initiate discussions so that patients can be seen and supported with Advance Care Planning out
in the community
5. Document and effectively communicate the plan of care across the care continuum
6. Develop a plan of care in collaboration with the patient and/or family that promotes the patient’s values,
is clinically appropriate and delivers care to the dying patient to ensure a comfortable and dignified
death
7. Navigate the process for the complex patient at the End of Life where there are many clinical teams
involved
DEFINITIONS
To be able to provide high quality care and medical treatment at the End of Life it is important to understand
the progressive phases which can contribute and the different terminology.
The following definitions are taken from the Australian Commission on Safety and Quality in Health Care
Background Paper on End of Life Care in Acute Hospitals (2013), National Consensus Statement: Essential
Elements for Safe and High Quality End-Of-Life Care in Acute Hospitals (2014), the Department of Health
Best Care for Older People Everywhere Toolkit (2012), Advance Care Planning: A strategy for Victorian
Health Services (2014) and the Medical Treatment Planning and Decisions Act (2016):
Advance Care Directive
A document that sets out a patient’s binding instructions or preferences and values in relation to the medical
treatment of that patient in the event that the patient does not have decision-making capacity for that medical
treatment. An advance care directive may contain either or both of the following:
(a) an instructional directive.
(b) a values directive.
Advance Care Planning
Advance care planning is the process of planning for future health and personal care whereby the patient’s
values, beliefs and preferences are made known so they can guide decision making at a future time when
that patient cannot make or communicate his or her decisions.
End of Life
PRACTICE GUIDELINE
TITLE: End of Life Care
That part of life where a patient is living with, and impaired by, an eventually fatal condition, even if the
prognosis is ambiguous or unknown.
End of Life Care
End of Life Care combines the broad set of health and community services that care for the population as
they approach the end of life.
Eventually fatal/terminal condition
A progressive condition that has no cure and that can be reasonably expected to cause the death of a patient
within a foreseeable future. The definition is inclusive of both malignant and non-malignant disease processes
and of the ageing process. A patient has an eventually fatal condition if their death in the foreseeable future
would not be a surprise.
Hospice
A hospice is a comprehensive service provided to people living with and dying from an eventually fatal
condition. This may include inpatient care, respite care, and End of Life Care for people who are unable to die
at home. Hospices may also offer day care facilities and community home visiting teams.
Medical Treatment Decision Maker (MTDM)
The first person in the list below who is reasonably available and willing and able to make a medical treatment
decision on behalf of an adult patient without decision-making capacity (NB: there can only be one MTDM at a
time):
• a person appointed by the patient under the Medical Treatment Planning and Decisions Act 2016
• a guardian appointed by VCAT who has the power to make medical treatment decisions
• the first of the following who has a close and continuing relationship with the patient:
• the spouse or domestic partner of the patient
• the primary carer of the patient
• he oldest adult child of the patient
• the oldest parent of the patient
• the oldest adult sibling of the patient.
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.
Palliation
To palliate is to alleviate a symptom without curing the underlying medical condition. The term is used widely
in health care to refer to treatments or interventions (including surgical) that are focused on alleviation of pain
or other symptoms and is not necessarily limited to care provided for eventually fatal conditions.
Palliation in relation to End-of-Life care is the relief of symptoms and suffering to help a patient feel more
comfortable and to improve the quality of their life. Palliation of symptoms is a key goal of care for both Endof-Life and palliative care.
Palliative care
Palliative care is care provided for a patient living with, and dying from, an eventually fatal condition and for
whom the primary goal is quality of life.
Terminal care
Terminal care is care provided in a patient’s final days or weeks or hours of life, when death is imminent.
PRACTICE GUIDELINE
TITLE: End of Life Care
GUIDELINE
INTRODUCTION
Patients who are approaching the end of their life need high-quality care and medical treatment to support
them to live as well as possible until they die, and to die with dignity. In order to be able to provide this
treatment and care it is important to understand the last phases of life in patients with life-limiting illnesses.
Most patients will have multiple interactions with healthcare providers towards the end of their life. Although
there may be uncertainty about the timing of a particular patient’s decline, there are a number of points where
patients with life-limiting conditions commonly interact with acute health care systems. Actively identifying
these points offers an opportunity for patients and their carers to participate in planning care for the end of
their lives.
RECOGNISING KEYTRANSITIONS IN THE END OF LIFE CARE
Palliative care is not only relevant to the last weeks of life. Best practice for supportive and palliative care is
for a phased transition, with palliative care being offered alongside active treatment for a life limiting illness.
The diagram below supports this concept and the shift toward appropriate care near the End of Life.
Effective End of Life Care requires timely identification of patients at risk of dying. This should prompt
clinicians to initiate proactive and holistic needs assessment, shared decision making about goals of care,
and anticipatory care planning. The advantages of these timely discussions and planning can include:
• Addressing legal issues such as Wills and the appointing of Enduring Powers of Attorney and a
Medical Treatment Decision Maker (MTDM) whilst patients remain physically and cognitively capable.
• Allowing time for patients and families to discuss choices in terms of treatments, place of care and
preferred location of death and ideally documenting these treatment decisions in an Advance Care
Directive.
• Enabling patients to reflect on their life goals.
• Enabling patients to consider reconciling important relationships in their life.
Many of these tasks can contribute to a sense of completion and/or a ‘life well-lived’, making the eventual
acceptance of death and dying somewhat easier. There will be important physical, social, spiritual,
PRACTICE GUIDELINE
TITLE: End of Life Care
psychological, and cultural considerations for some patients. If in doubt, assistance may be sought from the
Palliative Care team.
IDENTIFYING PATIENTS WHO ARE REACHING THE FINAL DAYS OF LIFE – TERMINAL PHASE
The ability to make an accurate and timely diagnosis of dying is a core clinical skill based on careful
assessment. To improve the transition to terminal care, clinicians need to be identifying patients who are
reaching the final days of life.
Clinical indicators of dying may include:
• Change in functional status resulting in inability to self-care
• Having difficulty taking oral fluids or not tolerating artificial feeding/hydration
• No longer able to take oral medication
• Increasingly drowsy with no reversible cause identified
The clinician should consider if the patient’s condition was expected to deteriorate in this way and if further life
prolonging treatment is inappropriate for any of the following reasons:
• Patient has refused further treatment
• Patient has a valid advance care directive refusing medical treatment (or refusal of treatment
certificate completed prior to 12 March 2018)
• A MTDM has refused further treatment on the patient’s behalf
• Further treatment is likely to be futile or non-beneficial
If the patient is meeting any of the criteria above, then this should prompt multidisciplinary team discussion,
led by senior medical staff, to optimise care in the last days of life.
Whilst considering the clinical indicators of dying and whether the deterioration was expected, the clinician
should also consider all potentially reversible causes of deterioration.
• Infection (eg, urine, chest, cholangitis, peritonitis, neutropenia)
• Dehydration
• Biochemical disorder (calcium, sodium, blood sugar)
• Drug toxicity (eg, opioids, sedatives, alcohol)
• Intracranial event or head injury
• Bleeding or severe anaemia
• Hypoxia or respiratory failure
• Acute renal impairment
• Delirium
• Severe constipation
• Depression and other mental disorders where suicidality is a feature
The appropriateness of treating these conditions must be assessed for each patient on an individual basis,
taking into account for example, the burden of treatment, the symptomatic burden of the condition, the likely
efficacy of each treatment and whether the patient has previously expressed wishes in regard to this situation.
DECISION MAKING AROUND TREATMENT LIMITATION
The changing context of treatment limitation decisions at the End of Life.
PRACTICE GUIDELINE
TITLE: End of Life Care
The decisions regarding medical treatment at the End of Life can be very difficult given the complexity of
some illnesses, prognostic uncertainties, and the varied expectations and opinions of all involved, including
the patient, family, and health care providers.
As a patient’s health deteriorates and the focus of medical treatment is no longer one of cure,
decisions may be made to withhold or withdraw certain treatments. These are primarily medical
decisions. Health practitioners have an obligation to not provide futile or non-beneficial medical
treatments. Medical treatment is considered futile or non-beneficial if it offers no reasonable hope of
recovery or improvement or because a patient is permanently unable to experience any benefit.
Where there is agreement from all medical staff involved that a treatment is not medically beneficial, such
treatment should not be offered to the patient. It may be appropriate to discuss the decision to withhold or
withdraw treatments that are not medically appropriate, with the patient and/or their family. This discussion
should involve an explanation as to why they are not being offered.
Medical treatment decisions should also be based on what the patient would want in the circumstances. A
patient’s preferences, values and personal and social wellbeing should direct decisions about the patient’s
medical treatment. If a patient no longer has decision-making capacity, then the health practitioner must make
reasonable attempts to locate an advance care directive and a MTDM.
Treatment should not be offered to a patient when:
• It is clinically judged that the patient will not survive the proposed treatment
• The burdens of treatment outweigh any potential benefits
• The treatment would not be successful in producing the desired clinical effect
• The treatment may be successful in producing a clinical effect but fail to achieve important patient
goals
• An informed and competent patient is refusing the treatment
OR
• In the case of a patient without decision-making capacity, a valid instructional directive refusing the
medical treatment is available or the MTDM refuses the treatment on behalf of the patient.
Treatment that should be offered to all patients includes:
• Palliative care, reasonable medical treatment for the relief of pain, suffering and discomfort, and the
reasonable provision of water (this does not include artificial nutrition and hydration provided by
means of a Percutaneous Endoscopic Gastrostomy or Nasogastric Tube).
AND
• Usual care which includes positioning for comfort, mouth care, personal hygiene, bathing, offering
food and fluids by hand, measures to maintain dignity.
COMMUNICATION
Patient/ Medical Treatment Decision Maker (MTDM) and Treating Team
Patients, their MTDM and their families place a great degree of importance on receiving clear, honest, timely
and frequent communication from the health care team as they near the end of their life. Early, sensitive and
proactive communication which aims to support shared decision making improves satisfaction with health
care at the End of Life. This will often prevent challenging differences of opinion regarding health care
decisions and will minimise future trauma for families/friends.
PRACTICE GUIDELINE
TITLE: End of Life Care
Disagreements can arise between the patient or their MTDM, their family and health practitioners regarding
treatment limitation decisions, or about other aspects of End of Life Care. These differences of opinion can
usually be addressed through skilful communication which should be clear, honest, sensitive and regular.
Differences of Opinions with Families
The wishes of the adult patient with decision-making capacity are paramount. If the patient has expressed
wishes regarding active treatment or refusal of treatment prior to loss of decision-making capacity and these
wishes are known, then these prevail over the wishes of the family.
Requests by patient or MTDM to commence or continue treatment that is not medically indicated
At times a patient or their MTDM requests a test or intervention that appears unreasonable or inappropriate to
the treating team. Such circumstances may include.
• where the patient’s condition continues to deteriorate despite optimal treatment
• where the treatment would not be successful in producing the clinical effect
• where the treatment might successfully produce a clinical effect but still fail to achieve important
patient goals such as independence from life-support devices, discharge from hospital, or recovery of
consciousness
• where the patient/MTDM are requesting that “everything is done” because they have an unrealistic
expectation about what treatments can achieve or they are not ready to accept the patient’s
inevitable death.
A focus should be kept on the patient. All requests for continuing treatment should be given due consideration
before decisions about the appropriateness of treatments are made. The treating team need to be clear why
they feel the treatment is not medically indicated, and other doctors involved in the patient’s care should be
consulted. If required, or requested by a patient or their MTDM, a second opinion should be obtained.
The treating team should initially endeavour to explain to the patient or MTDM why they think the desired test
or treatment is inappropriate. It is essential that clear, honest, sensitive and regular communication is
established and maintained with the patient or MTDM. The consultant is responsible for maintaining contact
with the patient and MTDM and ensuring that they provide regular updates of the patient’s condition. It is not
appropriate to delegate this responsibility to junior medical staff who may not be skilled in handling these
conversations. It is advisable to limit the number of health practitioners that are communicating directly with
the patient/MTDM in an attempt to avoid giving conflicting messages and creating mistrust.
Requests by patients or MTDM for cessation of treatment that is thought to be medically indicated
Unrelieved pain, suffering or depression may influence a patient’s request for treatment cessation. Under
such circumstances, it is important to discuss the treatment with the patient and identify why the treatment is
not wanted. If there are concerns regarding the patient’s mental state, degree of pain, or other symptoms then
advice from other appropriate professionals is required (psychiatrist, pain specialist, palliative care specialist).
It is also important to understand the patient’s underlying disease trajectory and the likely future prognosis.
It may be appropriate to negotiate with the patient an agreed plan of continuing treatment and further
discussion in the near future. However, if the patient is competent, is fully informed and continues to request
to not receive treatment or to cease treatment then this must always be respected. If the patient no longer has
decision-making capacity but has previously completed a valid instructional advance care directive (or a
Refusal of Treatment Certificate completed prior to 12 March 2018 that applies to the current condition)
requesting not to receive a medical treatment, then this must be respected and implemented. The MTDM can
also refuse medical treatment on behalf of a patient without decision-making capacity, provided the decision
is in accordance with the patient’s preferences and values.
If a MTDM refuses clinically indicated treatment in circumstances where the patient’s preferences and values
are not known, the health practitioner must notify the Public Advocate, who will review the reasonableness of
this decision.
PRACTICE GUIDELINE
TITLE: End of Life Care
Minimising conflict at End of Life
Strategies that clinicians can employ to help prevent conflict include:
• Ensuring clear, honest, sensitive and regular communication is maintained with the patient or
MTDM and family –
• Delivering information to the patient/MTDM/family about prognosis and the goals of care that is
honest, timely and sensitive, to help the patient/family to prepare for death
• Ensuring clinical consensus, before conveying information to the patient/MTDM/family. This
requires involved health practitioners to communicate with each other prior to communicating with
the patient or their MTDM or family
• Ascertaining the patient’s values and preferences for undergoing life prolonging treatments, before
they are too unwell to communicate
• Early family meetings to be arranged and attended by all relevant hospital staff. Clinicians should
meet prior to the family meeting to ensure consistency of information is provided to the
patient/MTDM/family.
• Ensuring senior clinical decision makers are actively involved early in the process
• Allowing time for family to come to terms with information and to make decisions. Additional family
meetings may be warranted to clarify and resolve outstanding issues.
• Ensuring identification of the appropriate MTDM
• Taking responsibility for any medical decisions to limit treatment
• Offering a second opinion may also be appropriate if the patient/MTDM/family are displaying
anxieties or uncertainties regarding diagnosis or prognosis. It is the responsibility of the senior
treating clinician to facilitate any second medical opinion. This opinion should be from a clinician
with expertise relevant to the patient’s condition and who is demonstrably independent from the
treating team. In some circumstances it may be helpful for a further opinion to be obtained from a
non-Alfred Health affiliated consultant.
• Acknowledging the importance of spirituality, religion, and culture and how they may impact on a
patient’s End of Life Care.
• If a dispute with the patient/MTDM/family cannot be resolved with consensual agreement or with
acceptance that the doctors are in a position to make a decision regarding the limitation of medical
treatment based on what is medically beneficial, it is appropriate to inform the Chief Medical Officer
and to seek advice regarding the appropriate next step. If this stage has been reached it is
important to review the decisions that have been made by the treating team and the evidence to
support these decisions and to ensure that all pertinent information has been carefully documented.
MANAGING END OF LIFE CARE
Advance Care Planning
Advance Care Planning (ACP) helps ensure a patient’s beliefs, values and preferences are made known to
guide future healthcare in the event that the patient is unable to make or communicate their own decisions.
ACP enables individuals to formally record their wishes in the following ways;
• Appoint a Medical Treatment Decision Maker (MTDM)
• Complete an Advance Care Directive that sets out their;
• preferences and values (values directive)
• binding instructions (instructional directive)
PRACTICE GUIDELINE
TITLE: End of Life Care
Patients who have decision-making capacity should be offered the opportunity to complete ACP. Assistance
can be provided through the ACP program and a referral should be made as required. For details on how to
introduce and refer a patient for ACP refer to Advance Care Planning Guideline.
If a patient no longer has decision-making capacity and a valid advance care directive is available, then the
health practitioner must determine if it contains an instructional directive, a values directive, or both. If there is
an instructional directive that is relevant to the proposed medical treatment, this must be relied upon as
though the patient had capacity and was making the decision. This means that if the patient refuses the
proposed medical treatment in an instructional directive, the health practitioner must not provide that
treatment. If there is only a values directive (or the instructional directive is not directly relevant), the health
practitioner must turn to the patient’s MTDM to obtain consent for any medical treatment.
Palliative Care
Palliative care provides specialised, co-ordinated medical, nursing and allied health services for people with
serious illness, whatever the diagnosis. It strives to provide physical, psychological, emotional and spiritual
support for patients and their carers in order for them to achieve the best possible quality of life.
Palliative care:
• Provides relief from pain and other distressing symptoms
• Affirms life and regards dying as a normal process
• Integrates the psychological, emotional, spiritual and social aspects of patient care
• Offers a support system to help patients live as actively as possible until death
• Supports families during the patient’s illness and in their own bereavement
• Review of patients in the last days of life to assist with implementation of the ‘Care of the Dying
Patient Plan’
PRACTICE GUIDELINE
TITLE: End of Life Care
REFERENCES
Austin Health. (2011) Life Prolonging Treatment Policy, Melbourne: Austin Health
Australian Commission on Safety and Quality in Health Care (2014) National Consensus Statement: Essential
Elements for Safe High-Quality End-of-Life Care in Acute Hospitals- Consultation draft. Sydney: ACSQHC
Australian Commission on Safety and Quality in Health Care. (2013) Safety and quality of end-of-life care in
acute hospitals: A background paper. Sydney: ACSQHC
Australian Medical Association (2007) Position statement on the role of the medical practitioner in end of life
care. Retrieved April 12, 2013, from https://ama.com.au/position-statement/role-medical-practitioner-end-lifecare-2007
Boyd K. & Murray S. (2010) Recognising and managing key transitions in end of life care, British Medical
Journal, 341: 649-652
Department of Health (2014) Advance care planning: have the conversation. A strategy for Victorian health
services. Melbourne: Department of Health
Department of Health (2012) Best care for older people everywhere toolkit – The toolkit 2012. Melbourne:
Department of Health
PRACTICE GUIDELINE
TITLE: End of Life Care
HOME HELP/PERSONAL CARE
Home help services are available for either as a funded government assisted service or private cost, please consult with social work
and/or the patient’s local council for further assistance
COMMUNITY NURSING
The Royal District Nursing Service collaborates with palliative care services across the state, contact them within the metropolitan
region or individual rural community nursing services in your patient’s locality
PLACEMENT TO A RESIDENTIAL AGED CARE FACILITY
The process of (permanent or respite) placement of a palliative patient is one that requires assessment, co-ordination and
communication. Community Palliative Care can support clients and their families with My Aged Care regarding referrals for long
term, short term and respite care.
