Patients say they are well informed about their rights, but these are not always applied … especially when respondents declare a long-term illness (ALD).
There is a gap between the general population of patients reporting a long-term illness (ALD). This is what the 2014 Barometer on the rights of patients of the Interassociative Collective on Health (CISS) reveals. If users say they are well informed, especially about their rights, the gap with reality is glaring, particularly among those surveyed in ALD.
Misidentified end-of-life rights
The right of access to healthcare is best identified by the people questioned: 95% say they know it. Closely followed is the information on the cost of care (93%) and seeing his pain relieved (90%). The rights governing the end of life and compensation, on the other hand, suffer from a relative lack of notoriety. Fewer than 8 out of 10 respondents say they know the right to refuse or interrupt treatment, to write advance directives or to request compensation in the event of a serious problem related to care. But the Ciss considers that this is not enough. “Media news [l’affaire Vincent Lambert, ndlr] recently recalled the difficulties in the implementation of end-of-life rights, obviously without allowing users to become fully aware of these rights. A more worrying finding: 3 out of 10 patients do not know how to access their medical file.
Twice the number of care refusals among ALDs
In fact, respondents do not always consider that their rights are well applied. The best known are also the best applied to their eyes. Opinions on the less well-known are a little more moderate. 42% of those questioned think that the right to compensation after a problem related to care or the right to write advance directives is well applied. An opinion generally shared with patients in ALD. On the other hand, concerning the right to refuse or interrupt a treatment, the latter are more lenient: they are 57% to consider that it is well applied, against 52% in the general population.
It is in the face of access to care and insurance that the gap is widening. One in ten respondents say they have been confronted, themselves or a loved one, with a refusal of insurance for health problems. They have a quarter to hold this speech among those polled in ALD. Same gap on the side of insurance proposals with exclusion of cover or extra premium: 23% of ALD patients are concerned, against 15-16% of the general population. People in ALD are also twice as likely to be confronted with a refusal of care (9% against 4%). In the general population, the state of health is the leading reason for refusal of care (40%) followed by the physical aspect (21%) and disability concerns 12% of cases. And when they don’t turn down a patient, some doctors go so far as to ask for payment without billing. 5% of respondents and 8% of those in ADL say that a health professional has already asked them for a bribe.
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