Cardiff law student Michael Thomas analyses the legislation’s impact on dementia patients. According to statistics from Alzheimer’s Research UK, there are 982,000 people currently living with dementia in the UK, and one in three people will develop dementia in their lifetime. Most people with the illness, according to Dementia UK, “reach a point where they cannot make their own decisions”. Such a diagnosis puts enormous pressure on patients and their families, particularly concerning the determination of critical healthcare decisions that may need to be made in the future, once the patient has lost capacity to make decisions for themselves.
Fortunately, the Mental Capacity Act 2005 (MCA) offers people in situations like this the opportunity to make an ‘Advance Decision’ whilst they have capacity that will be followed in the event they lose capacity. This is a way for patients to continue to maintain autonomy over their bodies and treatment following their loss of capacity. However, there has been academic discourse — most specifically from Sabine Michalowski — suggesting that the law does not offer sufficient protection to dementia patients in certain circumstances. I will seek to use a combination of the statistics and academic analysis referenced above to argue that the correct time to act and clarify the law on this area is now.
Dementia patients can still find satisfaction and joy in life despite their loss of capacity. ReaDementia, a blog dedicated to the disease, explains that quality of life does not automatically decrease as dementia progresses, and it does not remove someone’s ability to feel love and joy. This can be difficult to appreciate from both an external and internal perspective.
Stephen Smith argues that doctors routinely give a lower quality of life score to patients with disabilities than the patient would give themselves. A person with a recent diagnosis may not anticipate a happy and content life following their loss of capacity, even though it is a real possibility. They may sign an ADRT that will come into action once they lose capacity, becoming binding on the doctors and medical staff that will care for the patient. When a patient requires life-saving treatment, and if they had refused it in a s25 ADRT when they were autonomous, a doctor would be prevented from administering such treatment due to the existence of the ADRT. This presents no clear issues as the ADRT is fulfilling its intended function. However, the potential issue is circumstantial and specific to the case of dementia. In the scenario where a patient is living a happy and satisfied life, which they may not have appreciated at the time they signed the ADRT, they fall ill and require life-saving treatment. At this point, a doctor is legally prevented from providing it. The issue lies in the seemingly impossible situation for a dementia patient to rescind the ADRT following their loss of capacity and their unexpected realization of satisfaction with their current life. Under s25(2)(c) of MCA, an advance directive is invalid if the patient does something clearly inconsistent with the decision in the period between signing the ADRT and the point at which treatment would need to be provided. MyADRT, a website visited by the public to understand the ADRT process, suggests this is only the case if the expression occurs during periods of capacity. The legislation itself is silent on whether incapacitated people can invalidate their established ADRT through conduct, and there appears to be a lack of case law addressing this question. Patients with capacity can withdraw an ADRT at any point under MCA, but this is limited to those with capacity.Sabine Michalowski posits that it is inconsistent to bar an incapacitated patient from rescinding their Advance Decision to Refuse Life-Saving Treatment (ADRT) while permitting them to invalidate it through behavior. The Mental Capacity Act (MCA) does not explicitly address incapacitated invalidation, which is a significant oversight. If Michalowski’s argument holds, it becomes exceedingly challenging to rescind an ADRT, thereby complicating the legal justification for life-saving treatment.
Consider the hypothetical case of a dementia patient who, despite losing capacity, finds happiness and contentment after having previously signed an ADRT to forgo life-saving treatment in the event of such incapacitation. This scenario suggests that their decision is irrevocable, raising questions about the flexibility of ADRTs. One potential recourse lies in Section 25(4), which invalidates an ADRT if there are reasonable grounds to believe the patient did not foresee their current circumstances and would have made a different decision had they known. While this provision seems to offer a safety net, the dementia and the need for life-saving treatment are not unforeseen; they are the very reasons for signing the ADRT. The ‘unexpected’ element stems solely from the patient’s contentment with their current life, which lacks the objectivity and reliability required to ensure patient security in such cases. It is time to revisit the concept of Advance Decision to Refuse Life-Saving Treatment. The lack of a clear solution in practice raises questions about whether this was an oversight by parliament. Although the circumstances are specific, data indicates they are not as rare as one might think. The rigidity of an ADRT is crucial for protecting a patient’s autonomous voice and decision. However, whether the application of an ADRT should be reconsidered in the outlined situation is warranted. This is a complex issue, intertwining moral dilemmas between respecting an autonomous person’s decision and potentially disrupting their current quality of life. The question of whether an ADRT should stand when the individual no longer recalls making it, especially when they are content, has significant implications. While, there is no reason why an ADRT should not be honored, the consequences of allowing someone to die based on a decision they no longer remember are profound.In the realm of dementia, what is needed is not a change in law, but rather a clarification of existing legislation and increased awareness. This is crucial for those who may be diagnosed with dementia, which, according to Alzheimer’s Research UK, could be one-third of the population.
Michael Thomas, a final year law student at Cardiff University, has a particular interest in commercial law, especially as it pertains to the sports and entertainment industries.
His insights are valuable in understanding the legal landscape for those affected by dementia.The Legal Cheek Journal, which features Michael’s contributions, is sponsored by LPC Law, ensuring that the content is both relevant and informative for legal professionals and students alike.
