By Ginny Tyler, Learning Disabilities Specialist
Recent cases have highlighted that despite our progression many areas of health support to people with learning disabilities, there is still a need to demand and lobby for sensitive and appropriate end of life care.
New NICE guidelines published this month support the end of life care of all people around the right to a dignified death. This work is in response to the identified misuse of The Liverpool Care Pathway, which since the 1990s has provided guidance on the provision of care to the dying. The LCP was found to have been used as a box-ticking exercise rather than the checklist for the consideration of appropriate and sensitive treatment options that gave the patient more choice over how they were cared for.
Many of us feel that the LCP was a genuinely well-researched and well intentioned tool for care teams at a difficult time. It helped clarify and evidence our decisions and was focuses on the patient’s best interests. However in busy hospitals it is easy to see how it could become more perfunctory. The new guidelines remove the checklist in favour of ensuring continuous observations with appropriate treatment responses to these observations. Rather than letting the checklist dictate the activity, the onus is on the individual presentation of the patient at all times.
Dignity for all not guaranteed
Where patients have capacity and are able to communicate their wishes, this can enable them to manage pain and have a peaceful death. However, as with many frail and confused elderly people, those with reduced capacity may be denied this basic right. In January 2016, a doctor and nurse were jailed for allowing a child with learning disability to die unnecessarily, based on their mistaken belief he was not for resuscitation. Although not stated, one wonders if this would have been the case if the child had not had a disability.
In November 2016, the High Court ruled that the decision to place a do not resuscitate order on a young man with cerebral palsy and profound learning and physical disabilities was in contravention of Human Rights legislation. Clinicians had issued this order in his care plan without consultation, this being in spite of a 2014 ruling that patients should be involved in the decision making process in such cases unless there were clear reasons that this was not possible. His mother successfully argued that he should have been treated as any other patient and that this order was used solely because he was disabled.
This landmark ruling has significantly improved the chances of people with learning disability to receive the best quality health support irrespective of the opinions and attitudes of others. Given the number of recent cases where learning disability has been the reason for appalling levels of care or neglect of basic rights to treatment, this firmly places the client at the centre of care decisions.
One means of ensuring that the right decisions are made at the point where a service user is nearing the end of their life is to agree an Advanced Care Plan. This can set out the circumstances in which treatment can be offered or withdrawn, how the service user and their family are involved and consulted and what situations would result in the decision to stop heroic measures. Information on this planning process can be found on the Gold Standards Framework website http://www.goldstandardsframework.org.uk/advance-care-planning. Although families and indeed care providers may find this process distressing, it can greatly improve the quality of end of life care.
In circumstances where no advanced plan is in place, the default position should always be to preserve life and provide relief from pain and distress, ensuring the service user is at the heart of all decisions. It may be the case that you or your team are in the position of ensuring this is adhered to, so understanding the legal background and patients rights is fundamental to advocating for the best possible care.
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