Palliative, end of life and bereavement support

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Palliative care, end of life and bereavement support

Knowing when a child will die is an impossible task. For many children with life limiting conditions their condition can decline at any time. For some death can be quite sudden for others it can be slower, allowing for better acceptance, planning and goodbyes. For some when you think that death is imminent they make a miraculous recovery and can be well for a long period of time afterwards.

As a parent you only want the best for your child to know they haven’t suffered and were not in pain. Good practice on behalf of the professionals involved is vital as well as the gathering of information, building relationships, trust and confidence. It is important that families receive full care and support during this time that they are in full receipt of the facts and information in order that informed choices and plans can be put in place without any regrets or questions.

End of life planning

Communication and planning is key, as well as support from professionals experienced in end of life care. A multi-agency meeting should be convened to allow the family to meet the professionals involved and to draw up a care plan, listing individual care needs, agreed medical intervention, management, emergency procedures and intervention, family wishes, expectations and allow for on-going review and changes as directed by either the professional involved or the family. This should include symptom management and issues relating to resuscitation. Twenty –four hour access to a paediatric palliative care team / doctor should be made available to the family especially if the child is cared for at home.

Some children and young people suffering an MPS or related disease may become ill and die very suddenly – often in a matter of days – while for other children, with palliative care needs, this process may happen over a period of many years.

Most parents will have been aware of their child’s deterioration for some time and in some cases, will be first to recognise that their precious child is entering the final stage of life. In other cases, it may be the judgement of the healthcare team that are responsible for the care of your child, which breaks the news to you.

The approaching death of your child is likely to be the most difficult time in your life. Some families might feel that acknowledging that their child is dying is a sign that they are giving up and, somehow, letting their child down. Others want and need to be prepared. The desire to make everything perfect is so strong that this in itself can cause extra pressure for the family.

Many people feel that difficult times can bring families together but it can also create divisions. Parents may be at different stages of understanding, acceptance and preparation and it is important to realise that it puts a tremendous strain on relationships. Try to see what is happening, not only from your own point of you but your partner, other children and even grandparents.

The desire to make everything perfect is so strong and can be likened to the period before a birth; this is natural and should be recognised and accepted. Some parents may find it useful to ask for outside help and this can be sought from your hospice, Palliative Care teams, specialist centres or the MPS Society.

Most parents, at this stage, want to know where their child can die and how they will die. Where your child dies is very much up to you as a family and what you feel is best, you can always change your mind. It is worth having a plan of care in place, which can be continuously reviewed; this should involve all relevant agencies and allow for continuity of care, teamwork and advanced planning (including out-of-hours cover). Include family wishes, favourite pieces of music, poetry etc. It is worth considering how much you would like any siblings involved and what practical and emotional support they will require. Brothers and sisters, who are involved at this time, generally cope better in the months following the death of their brother or sister but their wishes obviously need to be respected and will allow them to feel more in control.

It is one of the most difficult series of decisions you will make but once completed, it can be reassuring to know that everything is in place.

Parents obviously do worry how they will cope at this time and some families, when looking back, are surprised at the strength they found and how well they got through it.

On becoming aware or being informed that your child is in the final stages of life, it is time to consider the options, discuss these and any concerns with the care team who will be able to reassure you.

Further information

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The MPS Society’s Advocacy Support Team has a booklet entitled ‘Planning Palliative Care and End of Life – A Guide for Parents’, which provides further information on the different options and choices available to you and covers a number of other topics including: What happens after my child dies?, Who do I need to contact?, Funeral preparations and choices, Keepsakes and memories, How we grieve plus a range of useful support resources and books for both children and adults. If you would like a copy of this booklet, please contact your Advocacy Support Officer, or call our office number on 0345 389 9901.

For more information, please take a look at the following pages: