Palliative care nurse reveals the 5 things people don’t know about dying

Close-up on a doctor holding the hand of a sick woman in bed at the hospital
It can be comforting to know what to expect (Picture: Getty Images)

Working as a clinical nurse manager at Marie Curie – the UK’s leading end of life care charity – Lucy Dowland knows more than most of us do about death and dying.

While it’s a taboo topic, we’re all going to die someday or lose someone we hold dear, and it can feel less daunting if you’re aware of what to expect.

You may also find it comforting to be equipped with the knowledge of our shared experiences if you lose someone close; less alone during what’s a difficult time.

According to Lucy, there are five things people often don’t know when it comes to passing away – and she’s sharing them with us to demystify the topic.

Death rattle

‘Often happening in the last days or hours of life, the “death rattle” is when a person’s breathing may become loud and noisy due to mucus building up in the airways,’ Lucy tells .

Although it can be distressing to witness this – with the noise sounding similar to a gurgle – she assures: ‘It isn’t painful for them, as they are often unconscious or unaware of it.’

Nurse, healthcare and disability with a senior woman patient in a hospital or retirement home with her caregiver. Help, support and medical insurance with a mature female and carer in a house
Palliative care nurses help people feel more comfortable in their last days (Picture: Getty Images)

Terminal surge

The ‘terminal surge’ can happen when someone, despite being in their final moments, has ‘a sudden burst of energy and acts like their old self again.’

Lucy explains: ‘They may suddenly look like they are “better” and will eat, talk, laugh and maybe even walk.

‘However, this can often happen in a patients’ last few days or hours before they die, so learning more about it can help relatives and caregivers emotionally prepare.’

Terminal agitation

We all want our loved ones to be as content as possible on their deathbed, but some people become distressed in their last few weeks, in what’s known as terminal agitation.

‘Patients can be restless, find it difficult to feel comfortable or relaxed, and may keep trying to get out of bed or wandering,’ says Lucy.

‘Finding out what they find comforting can be helpful, such as repositioning them, playing music, touching them gently or talking in a gentle way.’

Sad woman sitting near senior patient lying down on bed in intensive care unit at hospital
A person may feel distressed or uncomfortable in the lead-up to their death (Picture: Getty Images)

Changes to skin

Something you may find scary when caring for a dying loved one is how their temperature or pallor changes.

Lack of circulation can cause their limbs, hands and feet to feel colder, and Lucy adds: ‘People with lighter skin tones may look slightly blue, or their skin can become mottled.

‘On people with darker skin tones, blue can be hard to see, but it may be noticeable on their lips, nose, cheeks, ears, tongue, or the inside of their mouth.’

Loss of appetite

‘As the body uses less energy, wanting to eat less is natural in the last weeks of life,’ says Lucy.

Sometimes, a person’s tastes change too, or they might have difficulty swallowing.

At the very end of life, someone may not want to eat at all, which Lucy assures is perfectly normal (despite being potentially upsetting for those around them).

Lucy adds: ‘Everyone’s experience of dying is different, and while all the examples given above are common, always seek assistance if you are worried or need support.

‘Anticipatory medicines can be prescribed for people who need symptom control in the last days of life if these are causing them distress. You can discuss any prescribing needs with the dying person, and a healthcare professional involved in their care can suggest which medication may be appropriate.’

Need support?

If you or anyone you know has any questions or needs to speak to someone, you can call the Marie Curie Support Line on  for free between 8am to 6pm Monday to Friday, and 10am to 4pm on Saturdays.

The support line can provide practical or clinical information if you’re living with or caring for someone who has a terminal illness. Whether you have questions on managing day-to-day care, want to understand symptoms of treatment or just need a friendly ear – we’re here to help and listen.

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