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Having rights to healthcare and obtaining them are two very different matters for the learning disabled. (1)The learning disabled need access to diagnostic resources and treatment options to improve their healthcare. Access to improved healthcare can be obstructed by the patient’s lack of capacity and by our inability to cope with acting in the patient’s best interest. The patient may not want aspects of investigation or treatment options, but lack sufficient understanding of risks and benefits to make a capacitous decision. Despite incapacity for medical decisions as defined by the Mental Capacity Act being common in learning disability, the ability to have an incapacitous will is also plentiful. Other learning disabled people may passively go wherever we steer them, indeed they may want their lives steered by those they place their trust in. The placing of trust itself may be capacitous or not.
The next hurdle to access to resources is ourselves: our lack of preparation for dealing with commonplace ethical problems, our personal value judgments and consciences, our amount of authoritative voice. Some of us view it as patronising and unethical to steer patients towards testing and treatment, against their incapacitous will or without their voice in their so called best interest; others feel the same about excluding the learning disabled from technologies which can help them achieve better healthcare.
Then there is the problem of where we set the standard for capacity: is an interest in self-discovery and wanting the best health for oneself sufficient, or is it necessary to demonstrate understanding of possible complex permutations that lie on every path? The definition of “We” has been extended to incorporate the multidisciplinary team, which can bring benefits of valued perspectives but inconsistencies between personalised authoritative voice and ownership of responsibility.
Ethical problems and clinician anxieties around them also extend to the inclusion of learning disabled in potentially beneficial research. Such problems dominated Tyrer et al’s valiant trial on medication for this population to the extent that description of the clinician anxiety and resulting overly cautious commitment in the context of rigid official guidelines became the most important finding of the study. (2)
To avoid discrimination and inadequate healthcare for the learning disabled we need to face up to difficult decisions, we need to make decisions that we do not want to make, but need to make for those who cannot completely make them. We also need to take and allocate responsibility for our decisions. By no means are everyday ethical and human rights problems confined to learning disability and preparation at medical school for inevitable multiple encounters with them is an appropriate use of precious curriculum content.
References
1. Hall p. The importance of human rights. BMJ 2013; 346:f4047
2. Tyrer P, Oliver-Africano P, Romeo PR et al (2009) Neuroleptics in the treatment of aggressive challenging behaviour for people with intellectual disabilities: a randomised controlled trial (NACHBID) Health Technology Assessment 2009; Vol. 13: No. 21.
Re: Human rights should be taught in medical school to ensure proper care for people with learning disabilities
Having rights to healthcare and obtaining them are two very different matters for the learning disabled. (1)The learning disabled need access to diagnostic resources and treatment options to improve their healthcare. Access to improved healthcare can be obstructed by the patient’s lack of capacity and by our inability to cope with acting in the patient’s best interest. The patient may not want aspects of investigation or treatment options, but lack sufficient understanding of risks and benefits to make a capacitous decision. Despite incapacity for medical decisions as defined by the Mental Capacity Act being common in learning disability, the ability to have an incapacitous will is also plentiful. Other learning disabled people may passively go wherever we steer them, indeed they may want their lives steered by those they place their trust in. The placing of trust itself may be capacitous or not.
The next hurdle to access to resources is ourselves: our lack of preparation for dealing with commonplace ethical problems, our personal value judgments and consciences, our amount of authoritative voice. Some of us view it as patronising and unethical to steer patients towards testing and treatment, against their incapacitous will or without their voice in their so called best interest; others feel the same about excluding the learning disabled from technologies which can help them achieve better healthcare.
Then there is the problem of where we set the standard for capacity: is an interest in self-discovery and wanting the best health for oneself sufficient, or is it necessary to demonstrate understanding of possible complex permutations that lie on every path? The definition of “We” has been extended to incorporate the multidisciplinary team, which can bring benefits of valued perspectives but inconsistencies between personalised authoritative voice and ownership of responsibility.
Ethical problems and clinician anxieties around them also extend to the inclusion of learning disabled in potentially beneficial research. Such problems dominated Tyrer et al’s valiant trial on medication for this population to the extent that description of the clinician anxiety and resulting overly cautious commitment in the context of rigid official guidelines became the most important finding of the study. (2)
To avoid discrimination and inadequate healthcare for the learning disabled we need to face up to difficult decisions, we need to make decisions that we do not want to make, but need to make for those who cannot completely make them. We also need to take and allocate responsibility for our decisions. By no means are everyday ethical and human rights problems confined to learning disability and preparation at medical school for inevitable multiple encounters with them is an appropriate use of precious curriculum content.
References
1. Hall p. The importance of human rights. BMJ 2013; 346:f4047
2. Tyrer P, Oliver-Africano P, Romeo PR et al (2009) Neuroleptics in the treatment of aggressive challenging behaviour for people with intellectual disabilities: a randomised controlled trial (NACHBID) Health Technology Assessment 2009; Vol. 13: No. 21.
Competing interests: No competing interests