Clinical Nurse Specialists (CNSs) are experienced nurses who are specialised in palliative care and work with the community and hospital. They are part of the Specialist Palliative Care Service; CNSs provide help and advice from the point of diagnosis onwards. The aim is to ensure that individuals and their carers have access to the best information, treatment and support. CNSs support those with cancer and other life limiting illnesses. CNSs work with GPs, district nurses, hospital doctors and nurses, hospice staff and other health professionals involved in patients’ care. CNSs can help in the following ways:
- Advise and guide individuals through the different treatments available.
- Provide advice and information on any symptoms that an individual may experience.
- Identify sources of practical help, financial benefits, written information, and other helpful services available.
- Provide emotional support and time for individuals and their carers to discuss any concerns or questions you might have.
- Staff support, GPs, nurses, allied health professionals.
- Bereavement care.
CNSs can see individuals in their own home, hospital wards, outpatients’ department, hospice or in care homes. CNSs may only see individuals once or it may be more often if required. This will be negotiated with the individual and is also dependant on their needs. For more information about services in Hertfordshire visit End of life care – Herts and West Essex ICS
The last days and hours of an individual’s life can be a scary time for all involved regardless of if the individual has a learning disability or not. It may be a time for some when ‘reality hits’ that a person they care for will not be around for much longer or a friend they spend time with will not be there anymore.
This section aims to answer some of the questions that may arise during this time and/or prepare family or paid carers on what may happen during these last days and hours. During this time the individual’s body and internal system will slowly be closing and the organ performance will decrease.
As an individual approaches the end of their life some physical changes will occur, such as:
- Circulation slows.
- Fingers, toes, and nose may become cold and change colour.
- Breathing pattern will change and may ‘rattle’.
- Breathing may slow down or becomes uneven.
- Fluid and dietary intake will be very little or none.
- Confusion may occur.
- Anxiety and behavioural changes may be present.
If a person has an ICD, this would have been inserted to constantly monitor a person’s heart and to identify an abnormality of its rhythm and ‘shock’ the heart back into a normal rhythm. When someone is approaching the end of their life with an irreversible condition there is a risk, they will receive inappropriate shocks that will not improve their health. These may be painful and distressing for the person and those caring for them. Deactivation of an ICD is not painful; it does not change how the person feels and will not cause them to die but allows a peaceful end to their life when they reach the natural end of their life.
The decision about when it may be best for the person to have the shock function of their ICD turned off (deactivated) should be started by their GP. It’s important to consider this at an early stage if they develop a terminal illness, become very frail or they decide that they no longer wish to receive shocks from their ICD.
Here is a leaflet that explains more and a link to the Hertfordshire and West Essex ICB Information poster: Deactivation of the shock function of the ICD