How do you know when someone is deteriorating?

changes in their normal breathing pattern. noisy chest secretions. mottled skin and feeling cold to the touch. the person telling you they feel like they're dying.

The last days or hours of a person's life are sometimes called the terminal phase. This is when someone is "actively dying".

Everyone's experience of dying is different, and some people will die suddenly or unexpectedly. But there are often signs that can help you to recognise when someone is entering the terminal phase. These include:

It can be difficult to know whether someone is entering the last days of their life. If you're unsure, ask a more experienced colleague for advice.

If a patient shows signs that they're entering the terminal phase, speak to the district nurse, GP or palliative care team. They will speak to colleagues, the patient and the people around them to decide whether the patient is entering the last days of life and what care they need.

Read more about caring for patients in the last days and hours of life.

Some conditions can cause the signs and symptoms of dying but can be treated. Be aware of reversible causes of decline, which may include:

If you think the patient may have any of these conditions, tell their GP or specialist nurse, who will arrange assessment and treatment.

Keep monitoring the person regularly (at least every 24 hours) to make sure they're settled. Talk to the GP or district nurse if there are any changes in their symptoms.

Even when someone has been living with a terminal illness for a while, it can be a shock for the patient and the people around them when they reach the last days of their life. It's important to be honest and reassuring when you're speaking to the patient and those important to them.

The best person to speak to the patient and the people close to them is a health and social care professional who is confident and experienced. It can help if they have had time to build a relationship with the patient. If you do not feel comfortable doing this, ask a colleague to help. You can learn the communication skills needed to speak to patients at the end of life through training, experience and feedback from colleagues.

Check whether the patient has recorded their wishes in a care plan or other document. If they haven't discussed their wishes with anyone, offer them the chance to do this as soon as possible.

Read more about advance care planning.

Some family members and friends may experience grief before the patient dies. This is called anticipatory grief.

Find out how you can help support family and friends.

You may find our guides on specific conditions, which include targeted information about signs of dying, useful:

Here are some useful resources from other organisations:

National Institute of Health and Social Care Excellence Guideline: Caring for dying adults in the last days of life

National Institute of Health and Social Care Excellence Clinical Knowledge Summary: Palliative care-general issue: The terminal phase

• » Change in sleep patterns.
• » Subtle changes in a person's behaviour.
• » Reduced interest in personal care.
• » Diminished concentration.
• » Increasing dependence on others for their care needs.
• » Reduced mobility (which is sometimes referred to as 'off legs')
• » Decreased appetite.

Recognising when the health of an aged care resident is deteriorating is fundamental to ensuring the person receives the care and treatment they need.

It’s a sign that intervention is needed. When deterioration occurs it’s important it’s recognised promptly, and that appropriate action is taken.

But how can aged care workers observe the often subtle signs that a person is deteriorating, especially if they are agency staff and seeing different people every day, or if they are new to an aged care home?

A member of HelloCare’s Aged Care Worker Support Group recently asked if there is a structured way to identify if a resident is deteriorating. We reached out to an expert in the field to find out what tools they recommend, what to look out for, and what carers can do when they find that a person in their care has begun to decline.

Kate Reed is a palliative care nurse practitioner and works with Palliative Care Australia. She has worked in aged care homes for over a decade. When we spoke earlier this week, she began by telling HelloCare that the first thing you will notice when a person is deteriorating is a change in their habits.

“You might think, ‘Mum’s been in bed for two days. She might have a bad day every now and again, but two days is a bit strange, and she didn’t eat her dinner last night and she didn’t want her breakfast.’

“These sorts of changes can be really telling that something is going on,” Ms Reed explained.

Early signs of deterioration to look out for include a sudden lack of care about appearance, stopping attending group activities, and reminiscing about the past.

More than two trips to hospital within a six-month period can also be an early sign of deterioration, Ms Reed said.

In the later stages of deterioration, people might experience more fatigue than usual and they might begin to lose interest in food.

“It’s really important to keep their mouth clean and moist, but they’re unlikely to be wanting to have food” when their condition has progressed to this stage, Ms Reed said.

They might have nausea or a change in their bowel movements too.

People with a malignant disease may notice an increase in symptoms, for example, there might be an increase in pain or an increase in fluid in their bodies causing swollen feet because their heart isn’t working so effectively.

Some people go from being in “lots of pain to being in very little pain,” Ms Reed said.

It’s probably not surprising that distress can also be a common factor at this stage.

“The level of distress a person is having with their symptoms speaks to us about how fast you need to move,” Ms Reed said. “If they do have distress, it’s really important to involve specialist palliative care at that point.”

Members of the Support Group said the ‘Stop and watch early warning tool’ provides a framework for monitoring changes in a resident.

It prompts staff to be alert for potential changes in condition and provides a simple, clear way to communicate changes to nurses.

Ms Reed recommends the ‘Supportive and Palliative Care Indicators Tool’ – also known as SPICT – for regular assessments. These checks can be “repeatable and regular” so you can check a person over time and see how they have deteriorated.

Carers can use the tool to assess if the resident has unmet support and palliative care needs, and it can trigger important conversations and reviews to help plan future care.

Ms Reed also said asking the ‘surprise question’ – asking if you would be surprised if the person was to die in the next 12 months – can also be helpful.

If the answer is yes, then little needs to be done immediately other than some advance care planning.

But if the answer is no, Ms Reed recommends making sure the advance care plan is up to date. Begin having ‘goals of care’ conversations with the health team and loved ones about what the person wants, such as where they want to be to die and what interventions they would like.

In the sad situation where it appears the person is likely to die soon, Mr Reed says it’s important to contact their GP.

“The GP is the primary care provider and they will often have a really good idea of where the patient’s at,” she said.

A case conference with the GP and specialists can determine what the person’s prognosis is, what to expect in terms of symptoms, and what can be done to support the person. It’s about making sure the person is not going to suffer, so that everyone is informed, and so that loved ones all have the same picture and there is therefore consistency in the plan.

“You can have a really great plan, but if it’s not communicated to everyone then it can fall apart because there’s a lot of emotion and stress at that time,” Ms Reed said.

‘Terminal care planning’ is done in the last days to week, Ms Reed recommended, and involves talking to families about what to expect.

At this stage of life, the person’s consciousness will decline, and they’re unlikely to be able to swallow. They may experience confusion and disorientation. Alternative measures have to be taken, such as using injections and infusions, to make sure they receive the medication they need “so they’re not suffering”, Mr Reed said.

It’s important that family are informed about what dying will look like, and that the deterioration and changes they are seeing are a normal part of the dying process.

Many people die without palliative care, but at this stage of life people still need to be assessed regularly to identify what symptoms they are experiencing, and to make sure symptoms are being addressed properly.

Plans need to be in place by this stage. For example, it’s important to know what to do if the resident doesn’t want to go to hospital. Who’s the first person staff should call if something goes wrong? Who’s the enduring power of attorney?

“Those sorts of plans need to be in place way before they’re needed,” Ms Reed recommends.

Recognising the signs of deterioration as a person’s disease progresses does become easier and more acute with experience, Ms Reed said.

“I’ve looked after so many people who have been dying and have died, and also people who have been living with their disease for quite a long time. Treatments are better and people are living longer… but it still isn’t an exact science,” she said.

Everyone is different, so you shouldn’t expect to see all these end-of-life signs. Also, your loved one will progress at their own pace, which could be significantly fast or slow.

Some of the earliest signs have to do with a sense of resignation. That may involve low mood, lack of motivation, and withdrawal. The person may spend more time reminiscing about their childhood and earlier life experiences.

Loss of appetite, general weakness, and increasing fatigue become noticeable.

Your loved one will likely sleep more than they’re awake. They’ll move and talk less and may not respond to conversation or commotion. Their sense of hearing is most likely unchanged, but vision may be impaired.

Other signs in the final days may include:

Some people experience a certain amount of restlessness or have a burst of energy.

Signs that the body is actively shutting down are:

It’s thought that hearing is the last sense to fade. Even when unconscious, your loved one can probably still hear you.

At the moment of death, breathing stops and there’s no pulse or measurable blood pressure. If the eyes remain open, pupils will be dilated.