Decision Making

Now shes not requiring oxygen, and is on oral antibiotics.

C was discharged late in the evening on oral antibiotics. She was found dead in bed by her family the next morning when they tried to wake her. A post-mortem was carried out and cause of death was found to be:

1a) Bronchopneumonia

2) Ventricular septal defect and pulmonary hypertension (Down syndrome)

An inquest was held and the Coroner concluded that Cs death was due to natural causes. The Coroner also issued a Prevention of Future Deaths report, with issues relating to a lack of reasonable adjustments, lack of consideration for her impaired respiratory function, lack of documentation regarding decision making and safety netting, and a lack of specialist input into communication with C. 

Communication

It is important to consider non-verbal communication as well as verbal communication when trying to understand our patients. Posture, facial expression and vocalisations can all give indications of how a person is feeling. Changes in behaviour are also important to consider, particularly behaviours of distress all behaviour is a form of communication. Some people use communication tools to help them express themselves or understand others. Examples include Makaton signing, gesture, symbols, photos and electronic systems. Families and carers can also be very helpful in supporting communication between patient and clinician. 

Mental Capacity Act, 2005

This act is based on 5 key principles:

1. Presumption of capacity everyone aged 16 and over (England and Wales) is presumed to have capacity to make decisions unless proven otherwise. 
2. Support to make a decision we must provide patients all practicable help in order that they may be able to make their own decisions. This amounts to making reasonable adjustments, in particular with regards to communication and information sharing. For example, we might use easy-read information leaflets, photos or symbols, we might spend longer with a patient than usual, we might break down information into manageable chunks, or we might ensure patients have family members to talk things over with. 
3. Unwise decisions people have the right to make decisions that we might consider unwise.
4. Best interests if a person does not have capacity to make a decision, any decision made for them must be in their best interests.
5. Least restrictive any decision made for a person who lacks capacity must be the least restrictive of their rights and freedoms.

Its also worth considering whether the decision has to be made now, or whether it could be delayed until there has been more time for the person to make the decision. Capacity can fluctuate and is specific to the decision being made, the time it is being made and the situation at the time. 

There is a 2 stage test of capacity:

1. Can the person understand, retain and weigh-up information, and then communicate their decision? Again, reasonable adjustments and support may be needed.
2. Is the persons inability to make the decision the result of an impairment or disturbance in the functioning of their mind or brain?

Guidance relating specifically to implementing the MCA in people with a learning disability, including best practice for documentation, can be found here. 

If this interactive blog has got you thinking about how to improve care for people with a learning disability in your department, take a look at the RCEM Learning Disability Toolkit for some suggestions and downloadable communication tools.

You can also read more about learning disability, health inequalities and the ED in this paper.