The NHS Trust v Ms D

Although it is clear that the First Defendant’s anonymity has been compromised by media exposure I propose to continue to refer to everyone involved in this case (other than the experts instructed for the purpose of this application) by initials to protect them as far as possible from further unnecessary publicity.

Eileen D (Ms D) is a woman of thirty-two. She lies critically ill in the W Centre for Neurology and Neuro-surgery in the North of England. She suffers from the most horrible of genetic neurological illnesses. It is a terminal condition known as mitochondrial cytopathy. In her case also it has attacked her brain and has caused her to have continuous epileptic seizures without recovery in between. By about four months ago her condition had stabilised but deteriorated to the extent that all her doctors and other medical experts said that she was in a vegetative state and probably had no awareness of any kind. That remains the situation today. They say there is no prospect of improvement or recovery. Accordingly they say that in their opinion it is not in Ms D’s best interests to try and prolong her life if, for example, either her breathing fails or she suffers cardiac arrest or contracts a potentially life threatening infection which would normally be treated by antibiotics. The NHS Trust ask the court to declare that it is not in Ms D’s interests to take these, and other invasive steps given her current condition.

Ms D’s parents, seven of her other relatives and her partner disagree. They have visited and continue to visit Eileen in hospital. They say that Ms D does have some awareness; on occasions she recognizes them and communicates with them by blinking or squeezing of her hand or similar sign. They say she is a fighter and that miracles do happen. Accordingly they oppose the doctors doing or declining to do anything which might not prolong her life for as long as possible. Every possible step and intervention should be taken they say.

The doctors’ response to the family is that, whilst not doubting that the family have witnessed the movements which they describe, these are reflex actions not true signs of awareness and that to intervene beyond providing the best possible nursing and palliative care is to do no more than prolong the dying process for Ms D, for no discernable purpose and for probably no more than an extra six to twelve months. The doctors assert that Ms D will die in any event within about twelve months. The doctors further assert that if artificial ventilation were to be initiated the situation would soon be reached where a decision had to be taken to discontinue it. That would be a decision which was even more difficult to contemplate than the one which now faces the Court, the effect of discontinuance of ventilation being awful both for the patient, the family and the medical staff.

The simply appalling fact about this family is that they have been here before. Ms D’s brother, M, died at the age of seventeen from the self same genetic condition a little over two years ago. Just to make matters even worse a sister also died prematurely in a road accident. So this is an especially desperate situation which faces this family.

In circumstances where it is accepted by all that Ms D herself lacks capacity to make any decision for herself, the Court has to decide the other issues which have arisen between the doctors and the relatives.

The Claimant Trust seeks a declaration in the following terms:

The First Defendant lacks capacity to make decisions regarding her future medical treatment.

It is in Ms D’s best interests not to receive:

bag and mask ventilation

electrical cardioversion;

intravenous fluid boluses.

It shall be lawful as being in Ms D’s best interests for the claimant or the responsible attending medical practitioners nurses and healthcare staff generally to furnish such treatment and nursing care as may be appropriate to ensure that Ms D suffers the least distress, discomfort and invasion of her autonomy as is consistent with giving the appropriate treatment and that she retains the greatest dignity.

In the event of a material change in the existing circumstances occurring each party shall have liberty to apply for such further of other declaration or order as may be just ”

In an earlier draft declaration the Claimants sought a specific declaration, at that time at sub-section 2(e), which included antibiotic therapy. The application proceeded on that basis until final submission. However following submission from the Official Solicitor that he was unhappy about the inclusion of such a declaration both the Claimant and the Official Solicitor would now prefer that this aspect of Ms D’s future treatment be left to the ultimate discretion of the treating doctors on the basis that they should decline to provide antibiotic therapy if they consider that such a course would not be in Ms D’s best interests at the time it was required.

The application for the declaration in the amended form is now supported by the Official Solicitor on behalf of Ms D he having heard all the evidence and other arguments. The application is vigorously opposed by the rest of the family.

I heard this application over two days and in open court. The evidence was both written and oral; expert and lay. So far as the expert medical evidence was concerned I have had statements from Dr. E, a consultant neurologist, dated 15^th September 2005. Dr E was Ms D’s treating neurologist for 6 months up to 14^th September of this year. I have also had statements from Professor C, the treating consultant neurologist since the 14^th September 2005. He has provided statements dated 12^th October 2005, 14^th October 2005 and 25^th October 2005. I have also had a letter from Dr H and Dr E dated 28^th September 2005 and a further report from Dr Schady, another consultant neurologist, dated 20^th September 2005. Finally I have had a report from an expert consultant neurologist instructed by the Official Solicitor, Dr Newman. His report is dated 10^th October 2005. In addition to the expert evidence provided by these five consultant neurologists I have a joint report drawn up by Dr Schady and Dr Newman following a discussion which took place between them on 21^st October 2005. All the reports to which I have made reference are contained in the bundle of papers specifically prepared for this application. Apart from this written medical evidence I heard orally from both Professor C, Dr Schady and Dr Newman. So that was the extensive medical evidence which was provided to the Court.

However I have also had numerous statements from members of Ms D’s family. Statements from her father (on behalf of himself and her mother), brother, sister-in-law, sister, uncle, aunt and another cousin have all been provided to me. I have read them with great care. In addition both Ms D’s father and cousin, Mrs O’H, gave oral evidence to me. So far as the family is concerned one or more of them have visited Ms D on a daily basis for the last few months. To say their evidence was heart rending is an understatement.

Quite apart from the evidence to which I have referred I have been provided with detailed skeleton arguments by the Claimant and First Defendant. They have been extremely helpful to me as will become apparent later in this judgment. Counsel for the family provided a short skeleton argument which she amplified by full and skilful submission orally.

Both the skeleton argument of the Claimant and First Defendant provide careful summaries of the background to this application. For the purposes of this judgment I rely upon that provided in the skeleton argument of the Official solicitor’s counsel, Miss Harry Thomas. I make no apology for adopting it more or less verbatim.

Ms D, who was born on 31.7.1973, is 32 years old and the daughter of the Second Defendants. She is part of a closely knit, loving and devoted family. Her partner, Mr DM, is presently in prison, but has been visiting her periodically. Ms D and her family are travellers and are of the Catholic faith. Ms D suffers from a mitochondrial cytopathy (“MC”) which has caused an encephalopathy (progressive deterioration of her brain function) and abnormalities in certain muscles, particularly those around her eyes.

Ms D’s symptoms, primarily generalised seizures, are thought to have started when she was about 14 years old. Ms D stopped anticonvulsant medication when she was about 23, but 2001/2 saw an increase in her seizures and at that time she is recorded as feeling depressed. Tragically Ms D’s younger brother died from MC aged 17 in August 2003 at the Hospital, after 4 months of repeated seizures. In 2004 Ms D’s condition worsened significantly: from June 2004 she had problems with her balance and often staggered when walking and in the Autumn/Winter 2004 she required repeated in patient admissions for prolonged seizures.

On 4.3.2005 Ms D was admitted to another Hospital suffering from status epilepticus, having been reported as suffering 7 seizures in the previous hour at home, with no recovery of consciousness in between. Ms D suffered further prolonged generalised and partial seizures and was transferred on 10.3.2005 to the Hospital, where she remains.

Ms D made a partial recovery from the March 2005 seizures, she was alert though dependent on others needing help to wash and feed and could not stand or transfer to a chair without a hoist or support from others. Although the generalised seizures were less frequent with anticonvulsant medication, Ms D continued to suffer frequent myoclonic twitching to her face and limbs especially on the left. In May the generalised seizures again became prolonged, severe and more frequent and on 15 May she suffered status epilepticus and was transferred to the Intensive Care Unit (“ICU”). Ms D was sedated, intubated and ventilated, where she remained until 10 June 2005, when she was transferred to a neurological ward.

As at 10.6.2005 Ms D opened her eyes to speech, spontaneously but reliably when subjected to a brief painful stimulus. She could stick out her tongue to command. Ms D responded to her family and medical and nursing staff intermittently throughout June and into early July. However since 7 July 2005 nursing staff carrying out neurological observations have calculated her Glasgow Coma Scales between 3-7 out of a possible 15. The treating clinicians and nursing staff are of the view that Ms D is now unresponsive. Ms D’s family report that she continues to respond to them.

Ms D is self ventilating through a tracheostomy, breathing humidified oxygen, she is fed by a naso-gastric tube, she is doubly incontinent and there is a urinary catheter in place. Ms D lies in bed immobile, save for myoclonic twitching and localised seizures in particular of the face and left arm and shoulder.

In addition to the summary on which I have drawn, counsel for the Official Solicitor also provided a detailed 18-page chronology particularly covering the period since the beginning of this year. The accuracy of this chronology has not been challenged and it also contains a most helpful summary of the most recent medical records. I have access to all the medical records in the case which were available photocopied in court. It is important to stress that all experts paid special tribute to the quality of the notes which had been kept for this patient enabling those who came after to examine with great care the progress of Ms D’s disease. So that is the tragic background leading to his application.

As the family do not accept the medical evidence, albeit it is unanimous, it is necessary for the court to make a specific finding as to her present condition. I have referred to the detailed reports which have been provided. I do not propose to repeat large portions of those reports but I will mention one or two particular passages.

Dr E, Ms D’s consultant neurologist until 14 September this year, says in his report of 15^th September:

“Her neurological condition has deteriorated further in the last few weeks. She now shows no evidence whatsoever of any response to any outside stimuli other that reflex responses such as constriction of her pupils to shining a light in them. In particular there is no response that indicates any reaction to the outside world. This is the view of myself, another consultant neurologist (Dr H), the junior doctors who see her day by day, and also the nursing staff who care for her completely 24 hours a day, seven days a week. In essence she lies in bed, constantly twitching in various parts of her head, neck and upper body, and it is unfortunate that, as I understand it, her family misinterpret this twitching as voluntary actions (especially those around her eyes and mouth). However I have attended her bedside whilst her father has tried to demonstrate to the nursing sister and me any responsiveness to his voice or presence and to me none was demonstrable. Her father has since agreed with me that she did not respond to his presence. All movements occur whoever is present or indeed if she is observed from afar, at all times of day and night. In my clinical opinion this twitching and jerking is due to epileptic discharges in her brain and occurs continually and completely independently of any external stimuli etc.”

Further on in his report Dr E says this:

“I do not believe there is any prospect for any improvement in her brain condition. The natural history of this brain condition is that it will continue to progress inevitably until she dies. Before then she is very likely to develop further inter-current infections because of her complete immobility.”

Professor C who has taken over Ms D’s care since the middle of September has provided three reports to which I have already made reference. He says this at paragraph 5 of his report dated 14 October 2005;

“Since taking over Ms D’s care I have seen her on a daily basis during the week. Her neurological condition has remained essentially unchanged since 14^th September. She is receiving full nursing care and self-ventilating by tracheostomy. She is fed by naso-gastric tube and has a urinary catheter. I never seen her to be responsive to her environment or to painful stimuli of the limbs. On occasions she may exhibit some spontaneous eye opening. She has voluntary muscular jerking (myoclonus) effecting her face, vertical random eye movements (ocular bobbing). I have not seen any spontaneous or purposeful movements of her limbs at any time.”

“I have discussed her current state with nursing staff and they are clear that the times I have seen and assessed her are representative of her current state, and that their own observation have failed to reveal any evidence of responsiveness to her environment. It is relevant that during the time I have seen her she has had no significant epileptic seizures. I regard this as particularly ominous event as I believe that this indicates a very advanced state of brain damage, given the difficulty that there has been in controlling her seizures over the previous months.”

Professor C concludes in this way:

“In conclusion, during the time have been responsible for her care I have found no evidence that she has any awareness of her surroundings and no ability or competence to express her view on future management. She exhibits a near vegetative state.”

Dr S who examined her on 14^th September 2005 on the instruction of the Claimants said this at page 6 of his report :

“For about a month Ms D has been unresponsive. The current examination findings indicate severe brain damage, not only to the cerebral hemispheres but also the brain stem. Five powerful anti-convulsant drugs have been used to suppress her seizures but she has almost continuous myoclonic jerking. Her unconscious state is not due to the side effects of her medication, metabolic derangement or status epilepticus. It is a reflection of brain damage that must be judged to be irreversible. I do not believe she will recover consciousness, whatever treatment is used.”

He goes on to say;

“As she is now I have no doubt that her expectation of life should be measured in months rather than years. I should repeat that there is virtually no chance of her emerging from her state of unresponsiveness so she will remain in a coma until she dies.”

Dr Newman, the consultant neurologist instructed on behalf of the Official Solicitor, examined Ms D on 8^th October 2005. He says this on page 5 of his report of 10^th October 2005:

“I examined Ms D laying on her right side and then on her back. The eyes were open but there were no following movements and there was no response to visual challenge. She had no startle to a sudden loud sound, the pupils were moderately dilated and responded sluggishly to a light stimulus. There was continuous facial myoclonic activity which also involved tongue and the left hand. There was ocular bobbing in synchrony with the facial myoclonus. There was no response to firm pressure applied to the forehead or to each limb in turn. Although the eyelids flickered with the myoclonus there was no additional blinking when the eyelashes were stimulated. There was a cough response on deep tracheal suctioning. The jaw reflex was very brisk, there was no tendon reflexes in the limbs. The limbs were flaccid and there was no limb movement other than the myoclonic activity of the left arm. Plantar stimulation produced no response. It was noted that the limb myoclonus was left sided whereas previously this had been recorded as right sided. Other than this point there was no difference in the current examination when compared with the clinical features documented in recent weeks in the medical notes. Ms D showed the appearance of a vegetative state with superimposed myoclonus.”

Further in his report he says significantly;

“Although I have not had the opportunity of interviewing members of the family, it is documented in the notes and also in my instructions that it is a major concern of the family that Ms D may still have some degree of awareness. I have been informed that the parents and other family members have reported observing signs of awareness such as eye tracking, blinking, limb movement and even rudimentary speech.

As indicated above Ms D is in a vegetative state. In my experience of many previous patients in this condition it has often been the case that non-sentient reflex activity is misrepresented by the family members as indicating a purposeful response. The medical notes and the nursing observations of Ms D contain many references to sentient responses until the period in June when the further deterioration arose. Since that time the highly experienced staff have failed to identify any sentient response despite the multiple evaluations on a daily basis. While I have every sympathy with the family who will have been desperately seeking signs of possible recovery I must regrettably conclude that Ms D has not shown any meaningful responsiveness for several weeks and the observations of the family have misinterpreted basal reflex responses and myoclonic activity.”

On 21^st October 2005 Dr Schady and Dr Newman discussed Ms D’s condition in response to specific questions put to them by the Official Solicitor. The results of that discussion can be found in the bundle of documents at page 76 and I do not propose to repeat them in any detail. Questions 16 and 17 specifically seek answers in relation to Ms D’s current state. Both doctors conclude that she is in a persistent vegetative state (PVS) as at that date. They also conclude, at Question 19 that the prognosis is hopeless and that life expectancy is between two and twelve months whilst remaining in a PVS condition until death.

That then is the medical evidence.

However, as I have indicated, the evidence of the relatives needs to be given all proper weight both by the clinicians and by this Court.

The relatives have known Ms D throughout her life and can speak about her. Both Ms D’s father and her cousin Ms O’H spoke extremely movingly of their visits to the hospital and their encounters with Ms D over the course of this year. Both their written and oral evidence report a variety of “sightings” of awareness if I may so describe them. They are set out both in the written statements of the relatives to which I have already referred and they were further amplified in oral evidence.

All members of the family assert that the movements which they have witnessed by Ms D indicate that she is aware of her surroundings, recognizes them and, at least in a rudimentary way, communicates with them as well.

In the note of the joint meeting between Dr Schady and Dr Newman these matters were specifically addressed. At Question 12 the following appears;

“Ms D’s family, who visit her frequently are strongly of the opinion that she responds to them. They explain that over the last four/six weeks Ms D has tried to communicate with them. Please consider Ms D’s family witness statements and explain your views as to whether any of the reported responses made by Ms D indicate an awareness and if so the level of awareness shown. The matters relied upon by Ms D’s family include…”

I shall not set out all the individual matters relied upon by the family and set out in sub-paragraphs A to M of that Question. They cover all the matters reported by the family. The response by the doctors in every case is that the matters witnessed by the family do not evidence awareness but are, in their professional opinion, no more than reflex or myoclonic movement consistent with the PVS condition.

Quite rightly the experts’ views were properly challenged by Miss Street on behalf of the family.

I heard, as I have indicated, orally both from Professor C, Dr Schady and Dr Newman. Their oral evidence really added nothing to the reports which they had provided. They did not in any way alter their position except very marginally in relation to the administration of antibiotic therapy. Professor C and Dr Newman were prepared to go as far as saying that their views that the movements exhibited by the patient were no more than reflex actions were views which they held “beyond reasonable doubt”. That is untypically strong language for doctors.

In reaching my conclusion about the patient’s current state I have been referred helpfully by counsel for the Official Solicitor to a report of a working party of the Royal College of Physicians entitled “The Vegetative State – Guidance on Diagnosis and Management”. At paragraph 2.4 of that report the Royal College set out the clinical features of the vegetative state (VS). Under the heading “Compatible Features” the following is found:

“As well as showing signs of a cycle of sleep and wakefulness patients in the vegetative state may make a range of spontaneous movements including chewing, teeth grinding, swallowing, roving eye movements and purposeless limb movements; they may make facial movements such as smiles or grimaces, shed tears or make grunting or groaning sounds for no discernable reason…”

That passage and the passage following in that report describe symptoms fully described and documented in Ms D’s case.

Having read and considered all the medical evidence and the evidence of the relatives, in the end I am driven to accept the evidence of the five experts who have examined Ms D. They are completely unanimous both as to diagnosis and prognosis. I must therefore find that Ms D is in an irreversible VS condition and that she will die in any event within the next twelve months absent a miracle. Whilst I have no hesitation in accepting the evidence of the relatives as to what they have seen, on the basis of the medical evidence I am bound to reject their interpretation of it. The movements which they have witnessed are consistent with the VS condition and result from reflex or myoclonic activity.

Given Ms D’s condition as found above, the law as to the court’s approach is nowadays uncontroversial. In the skeleton argument provided by Huw Lloyd, counsel for the Claimants he sets out the principles succinctly. I gratefully repeat and copy them verbatim, so far as is necessary.

“The Law

The principles of law to be applied in a case of this nature are conveniently set out at paragraphs 20-26 of Hedley J’s judgement in Portsmouth NHS Trust v Wyatt [2004] EWHC 2247 (Fam)

“20.

These and related issues have often been considered by the courts. I gratefully acknowledge the survey and analysis of the law undertaken by Munby J. in R –v- GMC and others [2004] EWHC 1879 (Admin) a case concerning Mr Burke. Without seeking to emulate, let alone rival, Munby J. I propose simply to set out the law that I intend to apply in this case.

This survey of the law reveals that it is my task to balance the benefits or disbenefits, advantages or disadvantages to Ms D in the granting of this declaration which would result in the withholding of certain types of life preserving intervention. In this context it is important to emphasise that the NHS Trust are not seeking declarations that would entitle them to discontinue any existing hydration, nutrition or ventilation as is sometimes the nature of declarations sought in similar circumstances.

Accordingly the first question I ask myself is; “Are there any advantages to this patient in this condition in attempting by the use of artificial and very invasive procedures to prolong her survival beyond that which will naturally occur?”

I can honestly answer that question by saying that I can think of none. Ms D’s death within a relatively short time span is inevitable. A few extra months will not be of any benefit to her. In my judgement she should be allowed as dignified a passing as is achievable. Some might say that her dignity has already been severely compromised by the progress and incidence of this awful disease. To subject her body to further grossly invasive procedure can only further detract from her dignity. That would, on the contrary, in my judgment, be a real disadvantage to her.

From the family’s point of view, of course, every extra day is worth fighting for and, given what they have had to face in the past few years, no one can have anything but the profoundest sympathy for them in their hope for the arrival of a miracle. But my focus must be on the patient’s best interests and not on the family best interests.

In my judgement Ms D’s best interests demand that she should not be subjected to more that the minimum necessary to allow her to die peacefully and with dignity. The palliative care, which she has received since her re-admission to hospital, is acknowledged by all to be of the highest standard. That will continue for that is in her best interests. So too will be the regular monitoring of her condition throughout the day and night to detect any sign, however slight, of improvement.

So far as antibiotic therapy is concerned, the doctors acknowledged during the course of the oral evidence that there might, conceivably, be the need for the use of antibiotics to deal with local infection and the like. However, they do not intend to use antibiotics to fight a generalised, systemic infection e.g. of the lungs or urinary tract which could lead to death. I agree with and endorse that approach and accept that this aspect of her treatment should be left to the treating doctors to take a decision about antibiotic therapy on the basis of what they regard as Ms D’s best interests from time to time. They have unquestionably acted in her best interests up to now; there is no reason to suspect that their approach will alter in the slightest after today.

Apart from that slight change to the approach (now agreed between the NHS Trust and the Official Solicitor), I shall grant the declarations which they both support in the terms proposed.

Ms D’s family will be disappointed by this result. I can only assure them that I have given the whole issue the most careful consideration and am sure that it is, in the end the best for her.