The Australian Commission on Safety and Quality in Health Care defines dying as 'the terminal phase of life, where death is imminent and likely to occur within hours or days, or occasionally weeks.'
Good end-of-life care focuses on providing a good and dignified death.
Managing symptoms in the last days of a person’s life is generally a continuation of what is already being done.
Planning ahead for eventual exacerbation of symptoms and new symptoms, that is, anticipatory care, is part of quality responsive care. Planning to cease or withdraw treatments should also be considered.
Patients and families value respectful and compassionate care, good symptom control, care that aligns with the person’s preferences, and effective communication.
If a person dies peacefully without needless suffering, the family and carers have the best opportunity to see the death as a good death and have fewer difficulties as they grieve.
At this stage, the person is generally poorly responsive or may be unconscious, and assessment and monitoring are based on signs such as agitation, restlessness, facial expression, body posture and changes in breathing. Symptom management may include responding to the following:
Care should be based on the needs of the person and the specific clinical context that the person is being cared for in. Specific guidance on how to manage symptoms in the dying person is available in the
Visit the palliAGED Symptoms and Medicines pages
The five priorities for caring for a person as they are dying are:
Careful discussions may be needed to balance
the wishes of the carer and family with the wishes of the person and the
options for the person’s care.
Family members and carers may be helpful in
picking up changes and non-verbal cues from the person.
Providing a homely or personalised physical
environment may be of great comfort particularly if it allows family or friends
to stay close to the person.
Caring for someone who is dying can be very
difficult and carers may feel overwhelmed, isolated, or unsupported. They may also
struggle with the increasing demands of caring in the last days of life. The
community nurse can help through education and resources. They can also connect
them to support services.
offers information and resources for carers across the care journey including
the end of life.
The person’s desire and ability to eat and drink commonly diminishing over a period of weeks to months as their health deteriorates. As the person enters the last days of life, their mental state and ability to communicate thirst or hunger are also often impaired. At this stage, many patients do not feel thirst or hunger, but they may have a dry mouth, which can be uncomfortable.
The person's family and carers may fear that the person will die of starvation or dehydration, and they may ask for medically assisted nutrition or hydration to be started or continued. If appropriate, explain that the person is not eating and drinking because they are dying, rather than dying because they are not eating and drinking.
The family may be able to assist with mouth care, especially if the person has a dry mouth.
'[…] has lost their appetite and does not feel thirsty. They find swallowing difficult and if food or fluids are given, they can go down the wrong way. I can show you how to moisten their mouth care for their mouth and teeth so that they feel comfortable.'
Ceasing or withdrawing certain treatment can be challenging. Discussing the cessation of treatment should also include the impact that continuing treatment can have on a peaceful death.
'[You/insert person’s name] have an illness that is no longer curable and it has made the body weak and tired. The body can no longer fight infection, and antibiotics are not likely to help anymore. [insert treatment] is not likely to prolong life or improve quality of life. Having [insert treatment] will mean that [insert effects or side effects] will impair the ability to […] and so it is recommended that this is not started or is ceased. Everything possible will be continued to be done to keep [you/insert person’s name] comfortable and to make sure that [you/insert person’s name] do not suffer.'
Resuscitation measures will not be effective or beneficial in the last days of life and may be distressing to a person and their family.
Decisions made as part of advance care planning including what to do in relation to resuscitation, may already be documented. If not, the doctors may explain to the person and family that resuscitation measures will not be effective or beneficial in the last days of life, and that the focus will be on keeping the patient comfortable.
'When you stop breathing or your heart stops, we will not try to restart it, and will let nature take its course. Everything possible will be continued to be done to keep you comfortable and to make sure that you do not suffer.'
In many clinical settings it is important
to plan ahead for access to medications for the symptoms common in the dying
phase. Medications prescribed should be based on the assessment of the dying
person’s condition and symptoms, and doses appropriate to the severity of those
symptoms. Certain medicines can be prescribed in advance (anticipatory
prescribing) to ensure good management when symptoms (e.g. delirium /
agitation; respiratory secretions; pain) occur. If anticipatory medicines have
not been arranged then a doctor or nurse practitioner can use the Pharmaceutical
Benefits Scheme (PBS) prescriber’s bag list of medicines (147kb pdf) which can be useful
in caring for the person dying at home.
Palliative care medications at the end of
life are usually given via the subcutaneous route, which is generally the least
invasive and most reliable route in the dying patient. More information can be
found in Syringe
This information was drawn from the following resources:
Read Palliative Care: The last hours and days of life from UpToDate
View CarerHelp Pathway 4: When someone is dying
Access more Terminal Care Resources
Page created 27 September 2022