Physical signs and care
How can you tell when someone with a long term lung condition is entering the last stage of life?
As people reach the final stages of long-term lung disease there are often typical physical changes. Despite these signs, it is not always easy to predict when the actual end of life will occur.
Each persons experience at the end of life is different. What might happen to one person might not happen to another. Also, the presence of one or more of these symptoms doesn’t necessarily mean someone is close to death. They might have been part of your life for months or years before.
Most long-term lung conditions get worse gradually 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 idiopathic pulmonary fibrosis.
For those in the end-stage of a lung condition, there is a noticeable, gradual worsening of their breathing. After each flare-up, their lung function doesn’t quite get back to the level it was before the flare-up, and their breathing becomes a bit more difficult.
Your lungs become less efficient as long-term lung disease develops and you might suffer other symptoms. Any exertion, even just changing your position, talking or eating, might make you feel out of breath. It can also become uncomfortable to breathe if you are lying flat, so you could try sleeping in a fairly upright position.
Reduced lung function results in low levels of oxygen in the blood. This can cause fluid retention in your legs and tummy and also a congested liver, 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.
Overall, the most common physical symptoms are:
- feeling increasingly severely out of breath
- reducing lung function making breathing more difficult
- having frequent flare-ups and hospital admissions or needing intensive home support
- becoming housebound due to feeling so out of breath
- finding it difficult to maintain a healthy body weight
- feeling more anxious and depressed
You, your family and carer can ask your health care team for more advice and information about what to expect in your particular circumstances.
Breathing might be improved by using inhalers, tablets and occasionally nebulisers. It can be helpful to use a hand-held fan when you are feeling breathless. You can keep it with you and the feeling of air on your face can make it feel easier to breathe.
However, if your breathlessness is more severe and blood oxygen is low, then long-term oxygen might be prescribed to improve your breathing and quality of life.
Long-term home oxygen
Long-term home oxygen is required when your lungs can no longer maintain enough oxygen in your blood. This oxygen is generally delivered from a machine that concentrates the oxygen from the air called an oxygen concentrator. The machine needs to be used for at least 16 hours daily. The amount of oxygen needed is carefully assessed and monitored and may need to be increased over time.
Oxygen is available by prescription only and is provided by a local oxygen supplier. Normally, your local respiratory team will assess your need for oxygen. However, your GP can prescribe oxygen cylinders in emergencies. Portable oxygen, usually from small cylinders, is also available and allows you to travel and go on outings.
Oxygen used to treat low blood oxygen may not always relieve breathlessness. If breathlessness becomes very distressing despite oxygen use, a number of medications are available to reduce the sensation of breathlessness.
These include tranquillisers such as diazepam or lorazepam, as well as painkillers called opioids such as morphine, but in lower doses than used for pain relief.
Anxiety and depression
Anxiety and depression can be common when your breathing gets more difficult, and can make it feel even worse. Loneliness and isolation are also common problems among housebound people living with a lung condition.
If you are housebound due to breathing difficulties, you should seek support from members of a specialist respiratory team, community matron, district nurse, or hospice or palliative care teams. Anxiety and depression may become so severe that they require treatment in their own right, in the form of counselling or medication.
Improvements in your mood can often lead to improvements in your breathing and mobility.
Sometimes, simple relaxation can help when you feel anxious or frightened. You could try thinking of a place that makes you feel happy or practising new ways to control your breathing. Your nurse or physiotherapist can help you with this.
Fluid retention can be treated with water tablets called diuretics, which reduce swelling. However, frequent trips to the toilet may become a problem if you feel breathless and have difficulty moving about. Speak to your health care team if you or the person you care for needs a urinal or commode.
Loss of appetite
Loss of appetite is often a major problem. As your breathing gets worse, you can lose weight. Breathlessness can make swallowing difficult and eating can become challenging.
A little of what you fancy can help increase the amount you eat. 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.
You can also add extra calories to food by:
- adding sugar to hot drinks and cereals
- adding butter to vegetables
- pouring custard and cream over fruit
- adding cream to breakfast cereals, mashed potatoes, scrambled eggs, puddings and soups
- using more butter or mayonnaise in sandwiches
If you are able to take alcohol, an aperitif before meals can sometimes stimulate your appetite. Some people like 50ml of sherry or port, but choose your favourite. Please check with your pharmacist that alcohol does not interact with any of your medications.
If you use oxygen, try using a nasal cannula when you are eating. If you use a face mask, remember to replace the mask in between mouthfuls to avoid your oxygen levels dropping when eating.
If eating is really difficult, nutritional supplements might be helpful and can be prescribed by your doctor or specialist nurse. You might also be referred to a dietician for advice. You can buy some nutritional supplements over the counter but always ask for advice from a health professional to find the most suitable for you.
If you are caring for someone who needs help when eating, these tips might be helpful:
- 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 are doing and to hear what you are saying.
- 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 are finished or to open their mouth to see if there is any food left inside.
- For drinks, use a cup with a big mouth opening. This ensures the drinker doesn’t have to tilt their head back as this increases the risk of liquid going into their lungs.
- Don’t rush the meal, as this could increase the risk of food entering the airways and could cause distress for the person eating.
- 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 they are tired.
- Ensure the person remains 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 a choking hazard.
Coughing could be a problem. Sitting as upright as possible, supported by pillows, can help.
There are also a number of medicines that can help stop a distressing cough. Your health care team can prescribe them.
Coughing attacks and severe breathlessness may also produce distressing and embarrassing incontinence of urine. This can be managed by reducing drinks containing caffeine such as tea and coffee, and alcohol. 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 how to get continence products.
Chest pain is usually less common with lung diseases but can be treated with painkillers. For severe pain or breathlessness that do not respond to other measures, a syringe pump that gives a constant dose of strong painkillers under the skin can be useful.
Fatigue (tiredness) and disturbed sleep
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 your symptoms, such as breathlessness, pain and coughing, disturbing your sleep.
Disturbed sleep patterns due to napping during the day may also make it difficult to sleep at night. 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 short of breath. 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 but sometimes you can stay at home supported by specialist respiratory teams. If the flare-up is severe, hospital patients may require non-invasive ventilation to help improve the level of oxygen taken into the lungs. This is delivered by a mask and a portable machine that supports breathing by providing air or oxygen under slight pressure.
The last few days of life
As the end of life approaches there are a number of physical and emotional changes that might occur. These can show in a variety of ways. Not everyone will experience the same or all of the changes. You might notice the changes over a period of weeks, days or maybe only hours. Some of the changes might be the same as signs of a flare-up, so please talk to your doctor or nurse.
Signs to look out for include:
- not wanting to eat or drink very much or not 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. There may also be an increase in chesty or respiratory secretions and noisy, moist breathing that occurs because of a build-up of mucus that cannot be coughed up. Remember, this might be more distressing for others than for the person affected
- needing oxygen, if it’s not already being used, and the support of other medical equipment. This does not need to get in the way of physical contact. Don’t be afraid to touch and be close to each other
- changes in skin colour and temperature. Skin may become pale, moist and slightly cooler just before death
- involuntary twitches. These are normal and do not mean that someone is distressed or uncomfortable.