End of Life Care and People with Long Term Conditions

Cancer, as an illness, may result in an illness and an impairment or, as it is more readily referred to, a disability.    It may be the case that a person who has been disabled for years acquires a diagnosis of cancer that manifests itself as an illness.  Many disabled people who have lived with impairment over many years, may require additional support at the end of life.  Professional people, particularly doctors, nurses and para-medics, must be able to differentiate between the two.  A disabled person, nearing the end of their life, needs people to understand those differences so that when they are dying they know they will still have as much control as they wish to retain. People who have lived with impairment have usually taken control of their situation. They will have been in a position where they have made choices and taken varying degrees of responsibility as any other human being. They have lived life, had dreams, ambitions, made decisions and achieved their potential just as anybody hopes to do.  When illness takes hold their situation changes yet again; they may find that they are spending time at their surgery or local hospital as illness leads to deterioration in health but not in impairment.  That is where life can then be compromised for a disabled person as they may wish to continue taking control while being supported by another group of people who are trained to take control.  

Doctors and nurses, trained in end of life care, may provide positive support in a disabled persons’ life but, equally, it may be a hugely negative challenge for a disabled person when they least need that challenge.  It is an area that requires attention in terms of facilities and services if a disabled person is to have a good death.  As an example of the kind of understanding required, it can be an anathema for a disabled person who wants to die at home to take delivery of a hospital designed bed.  Many disabled people have negative memories of being labelled a patient , admitted to a hospital ward and into a hospital bed.    At this stressful time there may also be a relative in the picture who needs support and who wants to provide support but if they,  too, are a person who likes to take control, illness can compound the situation for the disabled person.  If disabled people have personal assistants who have worked with them, they can often be an ally.  An independent advocate may provide support so that a disabled person in this position can have their wishes carried through.  

Training for professional people, appropriate to the issue of end of life care for people with long term conditions experiencing a terminal diagnosis, needs to be addressed.  Ideally this type of training will be delivered by disabled trainers who are fully conversant with end of life issues.