What are the physical signs in the last weeks or days?

As people reach the final stages of long-term lung disease there are often typical physical changes. But it’s not always easy to predict when life will come to an end.

Each person’s experience at the end of life is different. Experiencing these symptoms doesn’t necessarily mean someone is close to death.

Most long-term lung conditions get gradually worse over several years. The most common symptom is feeling increasingly out of breath. Some people’s breathing might get worse much more quickly, over weeks or months. This is particularly true of interstitial lung diseases, such as IPF.

For those in the final stages of a lung condition, breathing becomes noticeably worse. After each flare-up, or exacerbation, their lung function doesn’t quite get back to the level it was before and breathing becomes more difficult.

Your lungs become less efficient as long-term lung disease develops. Any exertion, even just changing your position, talking, or eating, might make you feel out of breath. It can become uncomfortable to breathe if you lie flat, so you could try sleeping in a fairly upright position. Reduced lung function may result in low levels of oxygen in the blood. This can cause fluid retention in your legs and tummy, which can be uncomfortable. Flare-ups usually reduce oxygen in your blood further and can make these symptoms worse.

Other symptoms might include a troublesome cough, poor appetite, chest pain and disturbed sleep patterns.

The most common physical symptoms are:

• feeling more severely out of breath
• reducing lung function making breathing harder
• having frequent flare-ups
• finding it difficult to maintain a healthy body weight due to loss of appetite
• feeling more anxious and depressed.

You, your family, and carers can ask your health care team for more advice and information about what to expect in your particular circumstances.

Pain is a common symptom in any advanced physical disease and can be part of the normal dying process. It can usually be well controlled using the right medications. These medications may include opioids (morphine-like pain killers). You might be worried about having opioids if you or a loved one has a respiratory condition, but they are safe for people with lung disease to use.

You’ll be given drugs in a way that causes the least amount of discomfort, pain, or stress. Your doctor may suggest trying a low dose of liquid morphine that is short-acting. This is to see initially how much you need help with your symptoms. If it helps, your doctor might suggest you have a longer acting morphine pill or morphine-like patch.

Breathlessness might be improved by using inhalers, tablets and occasionally nebulisers. It can be helpful to use a hand-held fan when you feel breathless. The feeling of air on your face can make it feel easier to breathe. But if your breathlessness is more severe and blood oxygen is low, long-term oxygen might improve your breathing and quality of life.

Long-term home oxygen is needed when your lungs can no longer maintain enough oxygen in your blood. This oxygen is normally delivered from a machine that concentrates the oxygen from the air called an oxygen concentrator. You need to use this machine for at least 15 hours a day. The amount of oxygen needed is carefully assessed and monitored and may need to be increased over time. Read more about oxygen therapy.

Oxygen is only available by prescription and is provided by a local oxygen supplier. Normally, your local respiratory team will assess your need for oxygen. Portable oxygen, usually from small cylinders, is also available and allows you to travel and go on outings.

Your GP can only prescribe palliative oxygen. This is for people who are reaching the end stage of life and have low blood oxygen levels.

Oxygen therapy used to treat low blood oxygen may not always relieve breathlessness. If your breathlessness becomes very distressing despite using oxygen, a number of medications are available to reduce the feeling of breathlessness. These include low doses of sedatives such as diazepam or lorazepam, as well as painkillers called opioids such as morphine.

Anxiety and depression can be common if your breathing gets more difficult and can make it feel worse. Loneliness and isolation are also common problems if you are housebound with a long-term lung condition.

If you struggle to leave the house because of breathing difficulties, ask for support from a health care professional. Anxiety and depression may become so severe that they require treatment in their own right.

You may also find relaxation or breathing techniques help to ease your feelings of tension and anxiety. We have more information on breathing techniques online.

Fluid retention can be treated with water tablets called diuretics. Frequent trips to the toilet may become a problem if you feel breathless and have difficulty moving about. Ask your health care professional about using a urinal or commode. Catheters are tubes that allow urine to pass from the bladder out of the body. They can be useful in end of life care, but there are risks of complications including infection and discomfort.

Loss of appetite is a common issue and is often a natural part of the disease process. A little of what you fancy can help increase the amount you eat, bring you pleasure and ultimately boost quality of life. If you find swallowing difficult, choose softer, moister foods.

Sometimes, smaller meals plus snacks throughout the day work well. Higher calorie snacks can include cakes and biscuits, cheese, and full-cream yoghurts. Choose nourishing drinks such as full-fat milk, hot chocolate, malted drinks, smoothies, fruit juice and fortified soups. Over-the-counter fortified soups and milkshakes are available in most supermarkets and pharmacies.

If you use oxygen, try using a nasal cannula when you eat. If you use a face mask, remember to replace it between mouthfuls so your oxygen levels don’t drop as you eat.

If eating is really difficult, nutritional supplements might help and can be prescribed by your doctor or nurse. You could also be referred to a dietician. You can buy some nutritional supplements over-the-counter but always ask for advice to find the best one for you. Read more about eating well with a lung condition.

Top tips for caring for someone who needs help eating:

• Face the person so they can see you and their food.
• If the person normally wears glasses or hearing aids, help them to put them on. This will help them to see what you’re doing and to hear what you’re saying.
• Offer smaller meals or portions that don’t overwhelm the person.
• Let the person eat slowly. Allow plenty of time for them to chew their food and swallow it. They might need to catch their breath before each mouthful.
• Watch for clues to help you tell when they have finished swallowing. If it’s hard to tell, ask the person if they’ve finished or to open their mouth to see if there is any food left inside.
• For drinks, use a wide cup or glass, so the drinker doesn’t have to tilt their head back. You could also use a straw, for cold drinks.
• Don’t rush the meal. This could increase the risk of food entering the person’s airways.
• Look out for signs of tiredness. If the person is getting sleepy, it is best for them to stop eating even if they haven’t finished their meal. This is because people are more likely to cough or choke on food.
• If possible, try and make sure the person waits at least 15 minutes before going back to bed or lying down. This reduces the chances of food and drink coming back up the throat and causing them to choke.

Coughing could be a problem. Sit as upright as possible, supported by pillows. There are medicines that can help stop a distressing cough. Your health care team can prescribe them. Coughing attacks and severe breathlessness may also produce incontinence. This can be managed by reducing drinks containing caffeine such as tea and coffee, and also reducing alcohol intake. There are also a number of continence products that can help, including a bladder tube and bag called a urinary catheter. Speak to your health care team about whether this may help.

Hiccups, indigestion and reflux can be difficult to manage if you have a terminal illness. Treatment is available to help manage these symptoms and there are things you or your carer can do to help you feel more comfortable. Marie Curie has more information about this on their website.

Fatigue (tiredness) and disturbed sleep are common as lung disease progresses. Fatigue may be due to a combination of anxiety, depression, poor sleep, and low-calorie intake. Lack of sleep may also be caused by symptoms, such as breathlessness, pain, and coughing, which disturbs sleep. Napping during the day may also make it difficult to sleep at night. Fatigue may never fully resolve but there are techniques that can help you to manage it and sometimes medications that can help with some of the causes. Talk to your health care professional about the possible causes and how to deal with them.

A flare-up may occur if you catch a chest infection. Having a chest infection means you will have a worse cough with discoloured, yellow, or green phlegm and you will feel more breathless. This should be treated promptly and usually improves with antibiotics and a short course of steroids.

If you have severe flare-ups you might be admitted to hospital and may need non-invasive ventilation to help improve the level of oxygen taken into your lungs. This is delivered by a mask and a portable machine that supports breathing by providing air or oxygen under slight pressure.

As the end of life approaches, you might experience a number of physical and emotional changes. These are different for everyone. You might notice changes over weeks, days or even hours. Some of the changes might be the same as signs of a flare-up, so discuss them with your doctor or nurse.

Signs to look out for include:

• Not wanting to eat or drink very much or at all. Swallowing may become difficult
• Losing physical energy, the ability or desire to talk and signs of withdrawing from family and friends.
• Feeling sleepy or drowsy most of the time, being very inactive and eventually becoming unconscious. It is not unusual to stay in bed or a comfortable chair rather than getting up.
• Changes in breathing rate or pattern. As the body becomes less active, the need for oxygen reduces. There may be long pauses between breaths and the tummy may move up and down more than the chest. Breathing in and out might cause gurgling or rattling sounds, because of a build-up of phlegm that can’t be coughed up. Remember, this noisy, moist breathing might be more distressing for others than for the person affected. Medication is available that can help to dry up the phlegm.
• Changes in skin colour and temperature. Skin may become pale, moist, and slightly cooler just before death.
• Involuntary twitches. These are normal and don’t mean that someone is distressed or uncomfortable. If you notice these it’s best to mention them to whichever health care professional is involved at the time.
• Needing oxygen, if it’s not already being used, and the support of other medical equipment. This doesn’t need to get in the way of physical contact. Don’t be afraid to touch and be close to each other.

Use of medical equipment in the final stages

Oxygen therapy might become burdensome in the final days and hours of life. This is because the blowing in the airways can cause soreness and as the person become less aware of their surroundings it can cause distress. If this happens, oxygen therapy can be removed, even if oxygen levels are low. This is with the knowledge that doing so will help relieve discomfort in the person who is dying, rather than contribute towards death.

Overall, the use of medical equipment in the final stages of is focused on comforting the person who is dying and is minimised as much as possible, to disturb them as little as possible.

Your health care professional can also prescribe ‘just in case’ medicines to keep at home. These are generally injectable medications a community nurse will give you if needed for symptoms like pain or breathlessness, where oral medications aren’t the best choice. Sometimes it can be difficult to access medicines quickly at night or weekends. Having a box of ‘just in case’ medicines means your health care professional can quickly control symptoms if you are in pain or start to feel sick.

Read next: Caring for a loved one in the final stages