How can you tell when someone with chronic lung disease is entering the last phase of their life?
Controlling symptoms
Taking control – your choices
The last few days of life
Caring for a loved one at the end of life
Health team support
Palliative care
When someone is entering the end-stage of chronic lung disease these are the most common symptoms they may suffer:
- increasingly severe breathlessness with worsening lung function
- frequent flare-ups and hospital admissions
- becoming house-bound because of breathlessness
- problems maintaining adequate body weight
- anxiety and depression
Most chronic lung diseases get worse gradually over several years, although, in some people with lung fibrosis, breathing may get worse more quickly – over weeks or months. For those in the end stage of chronic lung disease there is a noticeable, gradual worsening of the breathing. After each acute flare-up of the disease, lung function doesn’t quite get back to the level it was before the flare-up and breathing becomes a bit worse.
Your lungs become less efficient as chronic lung disease develops and you may suffer a number of other symptoms. Any exertion, even changing position, talking or eating can produce breathlessness. It can also become uncomfortable to breathe when lying flat, which can be helped by sleeping in a fairly upright position. Reduced lung function results in low levels of oxygen in the blood. This can cause fluid retention in the legs and abdomen and also a congested liver, which is uncomfortable. Flare-ups of lung disease usually reduce blood oxygen further and can make these symptoms worse.
Other symptoms may include a troublesome cough, poor appetite, chest pain, anxiety, depression and disturbed sleep patterns.
However, despite these pointers, it is not always easy to predict when the actual end of life may occur.
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Breathing may be improved by using inhalers, some types of tablets and occasionally nebulisers. However, if your breathlessness is more severe and blood oxygen is low, then long-term oxygen may be prescribed to improve your breathing and quality of life. Long-term home oxygen is required when the lungs are no longer able to sufficiently maintain the necessary level of oxygen in the blood. This oxygen is generally delivered from a machine which concentrates the oxygen from the air (an oxygen concentrator) and 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 only by prescription and is provided by a local oxygen supplier. Assessments for oxygen are generally made by your local respiratory team. However, your GP can prescribe oxygen cylinders in emergencies. Portable oxygen (usually from small cylinders) is also available and this allows for travel and outings.
- Oxygen is a treatment of low blood oxygen and 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 and strong painkillers such as morphine.
- It is not uncommon to get increasingly anxious and/or depressed when breathing gets worse. Anxiety and depression will make your breathing feel even worse. Loneliness and isolation are also problems which are common if people with lung disease are house-bound. Anyone who is house-bound because of breathing difficulties should be supported by members of a Specialist Respiratory Team, Community Matron or a District Nurse. Anxiety and depression may become so severe that the conditions require treatment in their own right. This treatment may be in the form of counselling or medication. Improvements in mood often result in improvements in breathing and mobility.
- Fluid retention can be treated with water tablets (diuretics) which reduce swelling. However, frequent trips to the toilet may become a problem for someone who is breathless and has 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 is often a major problem. As breathing gets worse, people often lose weight. Because of breathlessness and a low calorie diet, you can feel very tired and lethargic. The best course is to take small and frequent meals, consisting of your favourite foods, especially those with high calorie content. You can also add sugar to hot drinks and eat snacks like cakes and biscuits. Small doses of steroids or an alcoholic drink 30 minutes before food may also help your appetite.
- Finally, a healthy, balanced diet should improve your quality of life. The diet should consist predominantly of carbohydrates, protein and fibre (to help keep bowels in order) with vitamins and minerals. However, if eating is particularly difficult, then food supplements are available. These are intended to be used with food rather than replacing it. They are usually in powdered form (in various flavours) and added to drinks.
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Coughing may be a problem. Sitting as upright as possible, supported by pillows can help. In addition, there are a number of medicines which 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 caffeine-containing drinks (tea, coffee) and alcohol. There are also a number of continence products, including a bladder tube and bag (urinary catheter) if needed. Speak to your health care team about obtaining continence products.
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Chest pain is usually less common with chest diseases but can be treated with painkillers. For severe pain or breathlessness, which is not responding to other measures, a syringe driver which gives a constant dose of strong painkillers under the skin can be a useful addition.
- Fatigue and sleep disturbance are common as lung disease progresses. The fatigue may be due to a combination of anxiety, depression, poor sleep and low calorie intake. Also, lack of sleep may be due to your symptoms (such as breathlessness, pain and coughing disturbing your sleep). Talk to your GP about the possible causes and how to deal with them. Disturbed sleep patterns due to napping during the day may also be contributing difficulties in sleeping at night.
- A flare-up may occur when you catch a chest infection. Having a chest infection means you will have a worse cough with discoloured (yellow or green) phlegm and increased breathlessness. This should be treated promptly and usually improves with antibiotics and a short course of steroids. Severe flare-ups may require hospital admission but sometimes can be managed at home 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 via a mask and a portable machine which supports breathing by providing air or oxygen under slight pressure.
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When you are facing the end of a life you may find it important and reassuring to discuss with your carer and family what choices you’d like to make about your treatment and care. This is best done in private when you are in a relatively stable condition. The questions you and your family might like to discuss may include what you would like to happen in the event of future, worse flare-ups:
- Do you want to be admitted to hospital if you have a bad flare-up?
- Would you want to have non-invasive ventilation?
- Would you want to go into an Intensive Care Department and go on life-support?
- Would you agree to resuscitation if your heart or lungs stopped working?
- Where would you like to be cared for towards the end of your life?
These topics are hard to face but agreeing and documenting your preferences can be very reassuring, so you know that your wishes will be carried out. It’s also helpful to those caring for you so that they can make the right choices on your behalf.
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As the end of life approaches there are a number of physical and emotional changes that may occur. These can show in a variety of ways. Not everyone will experience the same or all of the changes. You may notice the changes over a period of weeks, days or maybe only hours.
However, there are some common things to look out for:
- Not wanting to eat or drink very much or at all (swallowing may become difficult).
- As you lose physical energy you may lose the ability or desire to talk and may seem to be 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 – this sounds like noisy, moist breathing and occurs because of the build up of mucus which cannot be coughed up. Remember this may be more distressing for an observer than for the person who is affected.
- You may develop the need for oxygen (if you’re not already using it) and the support of other medical equipment at the end of life. 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 (the 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.
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As death approaches it can be difficult to see someone you love or care about, physically or emotionally withdrawing from the world. However, there is still a great deal you can do.
We think that hearing is the last sense to go before death, so you can give care and support to your loved one by:
- spending time together and sharing memories and stories
- talking about people you know
- listening to worries and concerns
- playing music
- listening to the radio or reading together.
There are also practical steps you can take such as:
- moistening the mouth and lips with water, moisturiser or lip salve
- recognising what keeps someone comfortable. For example, gently moving arms and legs to reposition them if that seems to help.
Just sitting with someone and keeping them company can be very comforting. Don’t be afraid to take turns with your friends and family when doing this.
Don’t worry if the person you care for does not seem to respond very much. As the end of life approaches, weakness and lack of consciousness increases. It is that, rather than a lack of appreciation for you, that may stop them responding.
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Members of your health care team can give advice and offer help with controlling symptoms such as pain, breathlessness or chesty secretions. They can help to provide practical care with equipment such as special beds and mattresses to maintain comfort. They can also answer any practical or medical questions that you might have.
You may have heard of palliative care for people who have cancer. It is care which is designed to improve quality of life and prevent and treat pain, breathlessness and other distressing symptoms. It also aims to support you, your family and carers in a holistic way, dealing with psychological and spiritual care as well as practical issues. It is suitable and available for anyone with a life-threatening illness, including those with late-stage lung disease.
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Last medically reviewed: December '08
