Staying comfortable

There are several approaches to managing breathing symptoms at the end of life

As MND/ALS progresses the breathing muscles will continue to weaken. Whether using ventilation or not, respiratory failure will worsen, making breathing increasingly difficult.

In the last weeks, days and hours of life, your care team will help manage your symptoms and keep you as comfortable as possible. You will also be referred to palliative care for specialist support.

Your GP can give you a Just in Case Kit available from the MND Association. This has a supply of emergency sedation. It can be used if you suddenly become very breathless while waiting for medical help to arrive. See Key Definitions for more information about this.

You may be prescribed ongoing sedation. This helps relieve feelings of breathlessness and the anxiety this causes. Strong painkillers such as morphine can also be given to help reduce breathlessness, as well as offering pain relief.

Sedation and morphine-type painkillers can make you less aware of what is happening. In your last few hours you can choose to have stronger sedation. This can make you are unaware (like sleeping) and comfortable. You can make plans in advance saying what you prefer. See Making Your Choices Known.

Find the MND Association’s detailed guide to end of life care and planning in External Resources.

Top tip:  Approaches such as propping up with pillows, using a fan or relaxation techniques can help to ease feelings of breathlessness.