MSA Trust

09. Towards the end

Discussing dying may seem frightening, but often doing so can provide reassurances about your concerns.

If you find out what support can be provided and that the symptoms you may develop can be managed, this can be very reassuring. In these discussions you can explore where you would hope to be when you die, which will also make it more possible to put in place the best support to achieve this.

It is likely over your time living with MSA that you will have had increasing involvement of your GP, District Nurses, carers, palliative care and hospice support. Support from all these services will continue and may increase over this period to ensure any symptoms or issues troubling you are managed as well as possible as you approach the end of your life.

As you become weaker there may be an opportunity to check what your wishes are and for your family and carers to make sure that your wishes, that may be clearly stated in an Advance statement, ADRT, ReSPECT form or a Health Care Plan or End of life Care Plan, are known to everyone who is caring for you. It is also important to check that these wishes are known to the services which may be called out of normal hours – such as the ambulance service, doctors out of hours, nursing services etc. The completion of a DNACPR form at this time, if it has not already been completed, may be helpful so that your wishes are known. If this is not in place care staff may call an ambulance and attempts to restart your heart may be undertaken, including admission to hospital and intensive care, when this may not have been your wish and you would have wanted to die in familiar surroundings and comfort of your home.

How will you know you are reaching the end of life? Even health professionals who work in end of life care can find it difficult to predict how long someone has got left to live. However, there are particular changes and behaviours that become more common and persistent when our lives are drawing to a close. There is a natural instinct to start withdrawing from activities, eating and drinking less, being less interested in life around us and participating less in family life. Increasingly feeling unable to summon the energy or motivation to do things, so our world becomes smaller over time.

Many people at this point also find they are increasingly tired and spend longer periods asleep. Whilst it is still possible to get into a chair or wheelchair often people find they are more comfortable spending more time in bed. There is an increased tendency to develop infections. Antibiotics may work initially but often a pattern forms of recurrent infections with shorter periods between courses of antibiotics, which seem to be less useful as time goes on.

In MSA, because swallowing becomes so impaired, little bits of food, drink and saliva can all slip into the lungs, often with no or little awareness this has happened and causes what is known as an aspiration pneumonia. Appetite reduces and weight loss is apparent. Communication becomes too effortful and breathing more bubbly or shallow.

Dying is very rarely a dramatic event. In the majority of cases it is an increasing winding down of all bodily functions and everything stopping, death occurring in a peaceful and dignified manner.

If you have been able to plan ahead you may have thought through whether you want to be buried or cremated and what sort of funeral service you would like. This can be comforting to your loved ones knowing they are carrying out your wishes and creating the lasting memory you wanted.

Key messages

  • Knowing your wishes gives great comfort to those you leave behind, providing reassurance and guidance for them at a very difficult time
  • Ensure your wishes are known and any advance care plans are known to everyone who may be involved in your care
  • The period of dying and moments of death are usually calm, peaceful, comfortable and dignified.

The MSA Trust is here to support anyone affected by MSA. If you have any questions about the information on this page, please contact us and we will do our best to help you.