Terminal / End-of-Life Care

Providing care at the end of life

What it is

Related Resources

CareSearch Clinical Evidence Summary - Care of the Dying Person
CareSearch GP Hub - The Dying Patient
palliAGED - Symptoms and Medicines

Nurse Practitioner

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.

Why it matters

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.

In practice

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:

anxiety and emotional distress
delirium which is causing distress
excessive secretions
dysphagia (difficulty swallowing) is common and often subcutaneous medicines are required
nausea and vomiting
pain
shortness of breath (dyspnoea).

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

palliAGED

The role of the nurse

The five priorities for caring for a person as they are dying are:

recognising that the person is dying
clear and sensitive communication with the person (if able), the family and carers about what they can expect in the dying phase
clear and sensitive communication about care decisions – this may include decisions such as the appropriateness of antibiotics on case of an infection, ceasing or withdrawing treatments
supporting family and carers
creating a care plan including symptom management, oral intake.

Nurses can:

create a space where the person, family and carers feel safe and comforted
explain the dying process and what can happen
respond with empathy and compassion to concerns of the family and other members of the care team
provide terminal care in line with the person’s wishes and preferences (verbal and documented) which includes respecting the cultural beliefs and rituals of the person and the family
be an important point of contact between the dying person and the family and other care providers
monitor and anticipating symptoms
provide excellent mouth and skin care
encourage the family to participate in care if they want (e.g. stroking the person’s arms or back, brushing the person’s hair, offering ice chips)
organise a medical or nurse practitioner review if symptoms are not well managed or medicines not well tolerated
help the family understand what happens once the person has died.

Other care considerations at the end of life

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.

End-of-life Essentials and VitalTalk can help with practical tips on conducting these discussions.
For additional guidance see Communication and Working with families.

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.

CarerHelp 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.'

Despite explanation and reassurance, some families may continue to be very distressed that the person is not receiving nutrition or fluids. Some cultural and religious groups may have strong beliefs on this issue, and advice and support from someone of the same culture or faith (e.g. a pastoral care worker, spiritual leader) may be useful.

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 bag list of medicines (183kb pdf) which can be useful in caring for the person dying at home.

The caring@home National Core Community Palliative Care Medicines List can guide nurse practitioners, GPs and other prescribers with their care of their home-based palliative patients in the terminal phase with urgent symptom relief.

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 drivers.