What to expect when someone is dying

Angela Halley, palliative care consultant, Royal Marsden NHS Trust

Six minute read

Angela Halley, Consultant in Palliative Medicine at The Royal Marsden NHS Foundation Trust, talks us through what to expect when someone is dying.

What happens when someone dies? Are there common signs to look out for?

Every death, like every birth, is unique. None of us has gone through the experience of dying ourselves, however, as clinicians, we do know what may happen and we prepare for all eventualities.

We share this information with each patient’s family and friends so they understand what might happen as someone is dying.

Diagnosing dying is difficult. As doctors, we first look for what we can reverse, improve and cure. However, if somebody has an advanced illness, we may spot a change in their clinical signs and their outward appearance which shows that they are deteriorating.

The first thing we notice is that someone is in bed more of the time. They are weak, they sleep more, and are less aware of what is going on. They may have some wakeful periods but are less able to engage in the world around them.

Generally, the patient will spend more and more time asleep and it’s hard to know when the last wakeful time will come. We’ll often hear that patients have a clinical deterioration, improve for a period and then dip again. That’s not universal but it’s helpful to be aware of.

Their skin colour may change and get more mottled, especially their hands and feet. Their temperature will feel a bit different. They may also not be able to take their usual tablets by mouth or eat and drink as before.

In the later stages, a patient’s breathing pattern becomes much more irregular, and may speed up for a period, or slow down. Then there are long pauses between breaths, until the final breath.

Does someone’s breathing change when they are dying?

When we’re well and moving around, we have quite a lot of secretions in our airways which we clear by coughing or they move of their own accord.

If you are lying flat in a bed and less able to clear your own airways, these chest secretions can build up. They sound quite noisy, like harsh breathing sounds, or what used to be called ‘a death rattle’, but actually they sound worse than they are.

The person probably isn’t feeling uncomfortable due to the secretions, they are just breathing through them. We can use medicines to help if needed.

Is it possible to know exactly when someone is going to die?

We can’t know for sure. There are signs which help us to recognise when a person is dying, but the speed at which these changes happen varies from person to person. It can take a few hours or many days.

However, if we think it’s the last hours or days of someone’s life we’ll communicate this.

We share what’s happening as much as we can with patients — if they’re awake and able to understand — and with relatives. That gives an opportunity for decisions to be made together.

Do you have any advice for family and friends who are supporting someone in the final days or hours before death?

I think people worry about not being there when the person dies. It’s strangely common that families will sit vigil for many hours and days, but when they pop out to the toilet or for a shower, the person dies during that moment.

I try to reassure families that this could happen and they shouldn’t feel bad if it does. It’s impossible to stay at the bedside constantly. All the hours and days they may have spent with the person prior to that are absolutely as important as being there for the final moment.

I ask families to pace themselves and allow a bit of time away from the bedside. It’s an intense experience. People often worry that they are not doing anything, but being there is what’s important. A shift system for family members can help ensure time for breaks.

How can you prevent someone from dying in pain?

If a person hasn’t had a painful experience during their illness, it’s very unlikely they’re suddenly going to get a new pain when dying.

However, if patients already have, for example, a painful lump, tumour, or lesion, that pain would continue. They may have been receiving medicines for pain by mouth, and we often need to find an alternative way to deliver the dose, perhaps by injection.

I also regularly reassure patients and their relatives or friends that these drug doses would not be excessive, and are proportionate to the symptoms they may experience.

People fear pain towards the end of life, but there’s no reason why pain would escalate or suddenly surge.

When someone can’t tell me whether they’re in pain, we look for signs, such as grimacing, groaning, or looking uncomfortable.

If they show any of these signs, we’ll try to move the patient into a more comfortable position, check whether their bladder is full or if they need a catheter, keep their mouth moist or ensure their bedding is dry and smooth. These steps can be even more effective than pain medications.

People also worry about feeling sick, so we make sure anti-sickness medicines are available. When someone wishes to die at home, we provide what we call ‘just-in-case medicines’ for different symptoms. The district nurse can give these, but the patient may not need any of them.

What else can help someone who is dying?

When someone is dying, they may have spiritual needs. It may be very important for them to observe cultural rituals or customs about how they are cared for after they die or while they are dying. We ask relevant questions and respond appropriately to the requirements that people have.

Somebody told me once that probably the four most important things to say when time is short are: ‘thank you’, ‘I’m sorry’, ‘I love you’ and ‘I forgive you’.

Not everyone who is dying has the opportunity to speak to the people in their lives about these four areas, but I think doing so, if possible, can provide some resolution and comfort.

What changes occur to a person’s body after death?

There is no great change really — the person just stops breathing. They’ll feel cooler to the touch and their colour will probably change. However, there will rarely be any dramatic differences initially.

We try to give families time to spend with the person who has died in hospital. This tends to be for around four hours before the body is refrigerated for preservation, but there’s flexibility if needed.

It can feel like a separation for families and friends to leave the hospital after someone dies, especially if they’ve been there for a while, so we try to give people space and time. We would never rush them through this stage of the grieving process.

How did you get into this line of work? What is rewarding about it for you?

I became a doctor 16 years ago. My first job was caring for men with testicular cancer, prostate cancer and other urological conditions. As the most junior doctor on the ward, I spent a lot of time seeing very sick men who had cancer.

A palliative care consultant from the local hospice came to help manage these patients. It opened up a world to me that I didn’t know about. Combining clinical responsibilities with a highly personalised approach to care really appealed to me.

After working in oncology, I realised that palliative care was where I really wanted to be. I’ve been a consultant here at The Royal Marsden for nearly seven years. We see lots of very sick cancer patients that we help at all stages of their disease from managing symptoms at diagnosis to caring for them at the end of life.

It’s an important and valuable job — it allows you to venture beyond just treating disease, instead you care for the whole person and their family.

Read more interviews on Talking Death. Hear from artist Annie Frost Nicholson about creative responses to grief or from Laura D Pusey about why end of life care is a gift and an honour.

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