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.
