One of the wounding experiences which can result from social and societal devaluation is that of deathmaking, a term coined by Dr. Wolfensberger to describe actions that hasten the death of societally devalued people (cf. Wolfensberger, SRV monograph, 2013 , pp. 35-36, 41; and The New Genocide of Handicapped and Afflicted People).
A 5 April 2013 online article gives a statistic that “1,200 people with a learning disability die prematurely in NHS care every year.” (NHS stands for National Health Service)
The same article refers to a report titled ‘Confidential Inquiry into premature deaths of people with learning disabilities.’
Select quotes from the executive summary:
“The median age of death for people with learning disabilities (65 years for men; 63 years for women) was significantly less than for the UK population of 78 years for men and 83 years for women. Thus men with learning disabilities died, on average, 13 years sooner than men in the general population, and women with learning disabilities died 20 years sooner than women in the general population. Overall, 22% were under the age of 50 when they died.”
“43% of the deaths of people with learning disabilities were unexpected.”
“The most common reasons for deaths being assessed as premature were: delays or problems with diagnosis or treatment; and problems with identifying needs and providing appropriate care in response to changing needs.”
“In addition, professionals in both health and social care commonly showed a lack of adherence to and understanding of the Mental Capacity Act 2005, in particular regarding assessments of capacity, the processes of making ‘best interest’ decisions and when an Independent Mental Capacity Advocate should be appointed. Many instances were identified of inappropriate or poorly documented DNACPR4 orders.”
“Record keeping was commonly deficient – particularly in relation to fluid intake, nutrition, weight and seizures, and little attention was given to predicting potential problems, e.g. when a person was fearful of contact with medical professionals. A lack of recognition of the approaching end of life commonly led to problems in coordinating end-of-life care and providing support to the person and their family. Difficulties in obtaining Continuing Healthcare funding were also reported.”
Marc Tumeinski