How the DoLS can give voice to people with minimal consciousness

By Jakki Cowley

Earlier this week, Paul Briggs died, eighteen months after sustaining a traumatic brain injury in a road traffic collision that left him in a minimally conscious state (Source: BBC News). His death came a month after the Court of Protection had ruled that clinically-assisted nutrition and hydration CANH) should be withdrawn from Paul as this was in his best interests. Paul’s wife, Lindsey, had applied to the court for CANH to be withdrawn on the basis that that was what Paul would have wanted.

Advocacy role

I was Paul’s advocate, a role linked to my work with the Coma and Disorders of Consciousness Research Centre. I also worked as an advocate with two other people whose families were seeking withdrawal of CANH from their relative who was either in a vegetative or minimally conscious state. These individuals are among the most vulnerable people in society since they lack awareness of themselves or their environment either completely (vegetative) or mostly (minimally conscious). In this piece I consider the role played by the authorisation of the people’s deprivation of liberty in enabling their voice to be heard.

Of the three people I worked with, two (Miss S & Mrs N) were cared for in long-term care homes and one (Paul Briggs) was cared for in a hospital. Under the Deprivation of Liberty Safeguards (DoLS), care homes and hospitals in England who are depriving someone of their liberty must ask a local authority for a standard authorisation to do this.

Acid test

As established by the Cheshire West case in 2014, the ‘acid test’ to determine when someone is being deprived of their liberty is whether they are subject to continuous supervision and control and not free to leave – with the focus being not on whether a person seems to want to leave, but on how those who support them would react if they did want to leave. In all PVS and MCS cases in hospitals and care homes DoLS standard authorisations should be granted to protect the person’s rights.

As an advocate for these patients, my view of the evidence was that these patients would have chosen to leave their current environment (or proposed rehabilitation facilities) if they could as they would not have wanted to receive ongoing life-prolonging treatment.

Best interests

Ultimately the Court of Protection agreed that all three patients would indeed have wanted the withdrawal of all life-prolonging treatment and that this was also in their best interests. In each case the court hearing permitted the patient’s voice to be heard and their wishes were (eventually) respected despite the trusts and clinical commissioning groups involved introducing delays (in the case of Miss S) or being actively opposed (in the cases of Mrs N and Paul Briggs).

Press coverage and public debate on these court hearings rarely address the mechanisms which allow such cases to get heard. In particular they often fail to examine how cases are paid for, and whether those mechanisms can allow, for example, a family to bring, or push forward, a case where the trust is failing in its responsibility to bring a case in a timely manner or is opposing the family’s assessment of their relative’s best interests.

Legal expense

Applications to the Court of Protection in relation to continuing or discontinuing life-prolonging treatment have until recently been brought under sections 5 and 16 of the Mental Capacity Act, which concerns welfare and best interests decisions, and this does not attract non-means tested legal aid.

The cases are typically expensive (around £30,000-£40,000) and beyond the financial reach of many families. For families who are not eligible for legal aid, the only way forward may be to find a solicitor who agrees to work without charge, or at a vastly reduced rate, or agrees to support in an initial application only. This is where the fact that patients in prolonged disorders of consciousness may also be said to be deprived of their liberty can be helpful.

Miss S case

In one of the three cases, on which I worked – Miss S – a DoLS authorisation was refused on the grounds that the patient did not have a mental disorder as defined by the Mental Health Act 1983. Miss S was also described within the best interests assessment process as no longer having a personality due to the extent of her brain injury and therefore, in this instance, a DoLS authorisation would not be applicable.

The family considered applying for a judicial review where a judge reviews the lawfulness of a decision, act or omission made by a public body such as a local authority or NHS Trust. The CCG, having already agreed to apply to the CoP  for a decision about withdrawal of treatment in turn applied to court to determine if a DoLS authorisation was necessary and if so for the court to approve this. T

Ineligibility for legal aid

The family attended this initial hearing with no legal representation due to being ineligible for legal aid. The deprivation of liberty was granted but as this was via the court and not by a supervisory body through the DoLS process the family was ineligible to challenge decisions about treatment via section 21A of the MCA.

The family felt they needed legal representation to push the case forward and to also ensure they had representation to express their concerns about potential decisions regarding Miss S’s medications and proposed further assessments which they did not feel were in her best interests.

In the end, the teenage daughter was put in a position where she (as the only eligible individual) felt she had to apply for legal aid and the family secured legal representation for the final hearing (case reference: Cumbria NHS Clinical Commissioning Group v Miss S and Ors [2016]EWCOP 32). This case is discussed in more detail in this Journal of Medical Ethics article by Jenny and Celia Kitzinger, directors of the Coma and Disorders of Consciousness research centre (CDoC).

Mrs N case

In the second case (reference: M v Mrs N, Bury Clinical Commissioning Group and a Care Provider) Mrs N had been living in a care home and receiving CANH for the previous eight years.

She had been diagnosed with multiple sclerosis 20 years previously and no longer had capacity to make any decisions about accommodation, care or treatment. Her PEG feeding tube had been put in place as part of a ‘best interests’ decision. However, there was no formal record of this and Mrs N’s daughter’s recollection of the decision was that she was  told it was necessary and had to be done (ie she did not recall any discussion of what Mrs N herself might have wanted).

A dietician visited Mrs N towards the end of 2014 and highlighted her PEG would need replacing. Mrs N’s daughter, although unaware of the MCA or best interests processes, began to query how continued artificial feeding was in her mother’s best interests. She requested meetings on numerous occasions to discuss this further with the home and CCG but they were denied on the basis that further assessments such as the Sensory Modality Assessment and Rehabilitation Technique (SMART) and second opinions from a gastroenterologist and neuro-rehabilitation consultant were required first.

In January 2015, Mrs N’s daughter contacted CDoC who in turn put her in touch with me. This was in part because the care home where Mrs N resides suggested an independent mental capacity advocate (IMCA) be involved although Mrs N’s situation did not fit the criteria for IMCA involvement.

Court application

In April 2015, four months from when her requests for a meeting began, Mrs N’s daughter made a decision to apply to the court herself because she felt the delays in decision making were not in her mother’s best interests. Around the same time a DoLS authorisation was applied for, having not been in place at any point since the safeguards were introduced in 2009 or post-Cheshire West. However at this point and having previously exhausted options for progression to the court, this was essentially viewed as necessary paperwork as opposed to an avenue for challenging decisions.

Paul Briggs case

In the third case – Paul Briggs – not only was a DoLS authorisation granted but subsequent use was made of section 21A of the Mental Capacity Act, which relates to the Court of Protection’s powers to consider any aspect of P’s life or plans or arrangements for P if his liberty is being deprived.This can attract non-means tested legal aid. This can provide the necessary funding for families to bring an application to the court. I will focus now on the benefits this offered in the Paul Briggs case.

Paul Briggs, a police officer, was the victim of a collision with a dangerous driver on his way to work and suffered serious brain injuries. Nine months after his injury he was diagnosed as being in a minimally conscious state (MCS).

His wife, Lindsey, after several months of trying to relay what was important to Paul and what his wishes would be in this situation, was left feeling that nobody was listening to her view about what she believed Paul would want. Like the other two families discussed above, she eventually turned to the academic researchers at CDoC for help she had not been able to obtain elsewhere and, in December 2015, she appointed me as a specialist advocate to ensure that he had independent representation.

DoLS application

In January 2016, the hospital applied for and was granted a DoLS and I (as his advocate) was appointed as his relevant person’s representative (RPR) before his wife later took on the role. Throughout the various DoLS assessments it was consistently noted that it was likely Paul would challenge the authorisation on the basis he was residing in a hospital that he would not have wanted to be in and receiving treatment that he would not have wished to receive.

After Lindsey became Paul’s RPR she pursued a section 21A challenge (which was also about withdrawal of treatment) which was opposed by the Secretary of State for Health and the Legal Aid Agency. The case was heard by Mr Justice Charles, who found that Lindsey Briggs’ proceedings were properly brought under section 21A. She was therefore eligible for non-means tested legal aid funding for representation on the treatment-withdrawal issue.

Value of legal aid

Because Lindsey Briggs was granted legal aid, she was able to get legal representation in order to convey everything she and Paul’s family, friends and colleagues knew about Paul’s past wishes, his values and the decisions he would likely make if he could. Legal aid made it possible for his rights to be upheld. The Court of Appeal has granted permission to the Ministry of Justice, the Department of Health, the Legal Aid Agency and the Official Solicitor to appeal on whether legal aid should have been granted

At time of writing, pending the appeal, it’s difficult to know what will happen to this avenue for legal aid in the future – but whatever way it goes, we must ensure that the rights of the person are not lost in the process. While it should not be necessary for the family to have to actively campaign for, and promote, the voice of the patient – especially given the stated role of the Official Solicitor as P’s litigation frien) – it is clear in all three cases outlined above that family felt they had to take an active role, as otherwise the voice of their relative would not have been heard.

Jakki Cowley is director of Empowerment Matters, which provides training and consultancy in mental capacity and other forms of advocacy. She would like to thank Economic and Social Research Council Impact Acceleration Account (ESRC IAA) funding, which supported the writing of this piece via her secondment to Cardiff University (grant code: ES/M500422/1).