An NHS Trust v DJ & Ors [2012] EWCOP 3524

Case No 12208517

IN THE COURT OF PROTECTION

Date 6 December 2012

IN THE MATTER OF THE MENTAL CAPACITY ACT 2005

Before

THE HONOURABLE MR JUSTICE PETER JACKSON

Between

An NHS TrustApplicant

DJRespondent

(by his litigation friend, the Official Solicitor)Respondent

MJRespondent

JJRespondent

An NHS Trust

Applicant

(by his litigation friend, the Official Solicitor)

Respondents

Vikram Sachdeva (instructed by Hill Dickinson) for Foundation Trust

Michael Mylonas QC (instructed by the Official Solicitor) for DJ

Theresa Pepper (instructed by Jackson and Canter) for MJ and JJ

Hearing Hearing dates: 5 & 6 December 2012

JUDGMENT

[1]This is an application by an NHS Trust in relation to a 68-year-old man, DJ. He is represented by the Official Solicitor. The other parties are DJ's wife, MJ, and his daughter, JJ. DJ and MJ also have two sons, PJ and DJ Jnr. PJ has attended this hearing in support of his mother and sister.

Hearing in open court, limited reporting restrictions

[2]The hearing has been conducted in open court in the presence of members of the press. A limited reporting restriction order dated 27 November is in force. This prevents the naming of(i) the medical and care staff at the hospital where DJ is a patient,

(ii) the hospital itself and

(iii) the identity of the NHS trust. When making the reporting restriction order, I explained that it was necessary in order to ensure that the medical and care staff can continue to look after DJ without interference. The restriction on naming the Trust is necessary because identifying the Trust would identify the hospital. The Trust did not seek the order for its own sake and it has raised no objection to the hearing taking place in public.

[3]There are no other restrictions on what can be reported. In particular, the Official Solicitor has not sought to prevent DJ being named and the family members have not sought anonymity for themselves either.

[4]During the hearing, oral evidence was given by Dr G (one of DJ’s treating doctors), Dr Christopher Danbury (expert witness called by the Official Solicitor), JJ (DJ’s daughter) and MJ (his wife). The Court received a number of written statements from these witnesses and from others involved in DJ’s medical care.

The nature of the proceedings

[5]As a result of his illness, DJ does not have the capacity to make decisions about his medical treatment. The trust has brought the proceedings because there is longstanding disagreement between the family and the doctors about what treatment should be given. This requires the court to make an assessment of DJ's best interests within the framework of the Mental Capacity Act 2005. If that assessment supports the view taken by the doctors, a declaration may be granted endorsing the lawfulness of their approach. In some cases, such as those involving the withdrawal of life support from a patient in a vegetative state, this statement of lawfulness is necessary. It must always be recognised that a declaration is not a treatment order but the endorsement of a plan created by others.

[6]For a declaration to be appropriate, it must be possible to identify the circumstances to which it will apply. They must be sufficiently clear for a reliable assessment of the patient's best interests to be made. Sometimes the patient is in a stable condition, but it may also be possible for an assessment of best interests to occur where future circumstances can confidently be foreseen. However, it will not be right to make a declaration if this degree of confidence is lacking: otherwise the court’s endorsement may not be valid and may become a blunt instrument that is not appropriate in future circumstances.

What the application is about

[7]The application concerns the question of whether the Trust’s proposals are in DJ’s overall best interests. Its application, issued on 3 September 2012, originally sought a declaration in these terms: 1 That DJ lacks capacity to consent to or refuse treatment of any kind 2 That subject to the agreement of DJ's clinical team, it is lawful, being in DJ's best interests, for the following treatment to be withheld in the event of a clinical deterioration:• cardiopulmonary resuscitation

• invasive support for circulatory problems

• renal replacement therapy in the event of a deterioration in renal function

• intravenous antibiotics for further infectious complications

[8]Since 31 October, the Trust has not pursued the declaration in relation to the administration of intravenous antibiotics. The application now relates only to(1) Invasive support for circulatory problems. This refers to the administration of strong inotropic or vasopressor drugs such as metaraminol that are used to correct episodes of dangerously low blood pressure. They have significant side-effects and can even cause a heart attack, and they have to be administered by a painful process involving needles and usually by the insertion of a central line.

(2) Renal replacement therapy. In this case, this refers to the use of haemofiltration, where blood is filtered via a machine to make up for a lack of kidney function. It again requires a large line to be inserted and for a drug (heparin) to be administered to thin the blood to prevent clotting. This brings the risk of bleeds or a stroke. The process can be very unpleasant for the patient, and may cause intense feelings of cold accompanied by shivering. I shall refer to this as renal therapy.

(3) Cardiopulmonary resuscitation (‘CPR’). This can be given when a patient's heart stops. It can take various forms, all of them being intense. These include the administration of drugs such as adrenaline, electric shock therapy and physical compression of the chest and inflation of the lungs. To be effective, CPR is deeply physical and can involve significant rib fractures. A decision about whether to give it has to be made instantaneously.

[9]In support of this plan, the Trust seeks a further declaration that a “Do Not Attempt Resuscitation” instruction should be placed on DJ’s medical notes.

[10]The grounds for the application are that "the burdens of administering this treatment outweigh the benefits as there is little prospect of any meaningful recovery and therefore such treatment is futile."

What the application is not about

[11]The application is not about the withdrawal of the extensive baseline treatment that DJ is currently receiving. He is receiving a high level of medical support, including ventilation to allow him to breathe, and without it he would have died months ago. What is in issue is the withholding in future of the specified forms of treatment, some of which DJ has received in the past, including the recent past. The doctors see that as an escalation of treatment, while the family sees it as a continuation of what he has previously had. But no one is suggesting that the treatment DJ currently receives should be stopped.

[12]In particular, this application is not about the Liverpool Care Pathway. This is a protocol that has been developed with the intention of treating those who are near death in a way that gives them as little distress and as much dignity as possible by means of a humane and carefully controlled withdrawal of treatment. It is a plan that is discussed with patients or relatives beforehand. The doctors treating DJ are among those who have pioneered this approach. The family believes that DJ has been placed on the Pathway. The doctors are absolutely clear that this is not the case. I entirely accept their evidence about this. DJ is not and has never been on the Liverpool Care Pathway.

[13]This application is not about the standard of care DJ is receiving. Nonetheless, I record that the evidence shows that he has received a high quality of care during his time in hospital and that the staff are devoted to looking after him to the best of their ability.

[14]An application of this kind is never about ordering how doctors should treat a patient. Doctors are under a professional obligation to use their skill and knowledge to act in the best interests of their patient in accordance with established ethical standards. That is a judgment for the individual doctor in the particular case. A patient cannot order a doctor to give a particular form of treatment, although he may refuse treatment. The court's position is no different. If the patient or the court forms a different view from the doctor about whether treatment is appropriate, the only solution is to find another doctor who is prepared to offer it.

[15]In the same way, an application of this kind is not about hypothetical questions. The court will not consider whether a particular form of treatment is in the best interests of a patient unless there is evidence that the treatment is available. In the present case, the family would like DJ to be given treatment that the treating doctors are not currently willing to give, and there is no evidence that other doctors will do so either. Accordingly, it is not open to the court to conclude that the treatment would be in DJ's best interests when it is not practically available.

DJ’s situation

[16]DJ was born in 1944. He is a talented professional musician and a devoted family man. He and MJ celebrated their golden wedding anniversary in September. They have three children and three grandchildren and many friends. Before his illness, DJ spent over 50 years in the music business, continuing to perform from time to time after his retirement and right up to his admission to hospital. He was a heavy smoker.

[17]In 2001, DJ was diagnosed with cancer of the colon. He was successfully treated with surgery and radiotherapy, and a stoma was fitted.

[18]On 5 May 2012, DJ was admitted to hospital following three days of constipation from his stoma. This was soon resolved, but he unfortunately acquired an infection that was complicated by the development of chronic obstructive pulmonary disease, an acute kidney injury and persistent low blood pressure. On 24 May, he became extremely unwell and was admitted to the critical care unit, where he has remained. He was found to have multi-organ failure, with respiratory failure, cardiovascular failure and renal failure. On 27 May, he was placed on ventilator support.

[19]By the end of May, DJ had made sufficiently good progress for plans to be made for his discharge from the critical care unit to a normal nursing ward. However, in early June his condition again deteriorated and he again required inotropic drugs for his blood pressure. These led to necrosis (blackening) of his toes. Attempts were made to liberate him from mechanical ventilation by placing him on a lesser supported breathing system (Drager CPAP). During the month of June a tracheostomy was performed. Despite regular care, he began to develop sacral pressure sores from being confined to bed. Despite the best efforts of the hospital, he had become severely underweight.

[20]On 6 June, DJ showed some improvement and a tracheostomy was performed in an attempt to wean him off ventilator support. This met with mixed results with him managing eight hours unsupported breathing on one occasion but there has always been a return to the ventilator and he remains fully dependent upon it.

[21]From 2 July, DJ showed a marked deterioration in his neurological state with low levels of consciousness. The clinical team has not since then recorded any evidence of him responding to commands on request. Assessments concluded that he lacked capacity to make decisions about his medical treatment.

[22]On 3 July, DJ suffered septic shock and loss of blood pressure. He was treated with antibiotics and inotropes. There was evidence of an acute myocardial infarction, and he became unconscious with multiple organ failure. Subsequent tests demonstrated that he suffered a stroke that has left him with right-sided weakness and contracture of his legs, which can be painful.

[23]On 27 July, a CT scan showed severe damage to the left side of his brain.

[24]In July and August, DJ continued in a pattern of tentative recovery interrupted by recurrent infections leading to lowering of blood pressure, septic shock and multiple organ failure. He was treated with antibiotics and inotropic drugs as before. He had become a chronic carrier of the organism pseudomonas, which is impossible to eradicate from his system. That is a sign of chronic debilitation.

[25]On 13 August, DJ had an asystolic cardiac arrest that required six minutes of advanced CPR to save him.

[26]On 22 August, a formal structured meeting between the Trust and the family produced no reconciliation of views.

[27]Since then DJ has had multiple episodes of infection. On 4 September, he suffered further injury to his kidneys as a result of low blood pressure. On 2 October, he was again treated with antibiotics.

[28]On 22 October, DJ had a peri-arrest attack that was combated with extensive medical support.

[29]On 19 November, he had another significant deterioration when he became very unwell.

[30]DJ's medical condition since May has fluctuated. There have been regular peaks and troughs. The episodes above represent the troughs, from which he has had to be rescued. In between, there have been continuous efforts to liberate him from a mechanical ventilator onto CPAP. This is achieved by increasing the number of hours of CPAP to the greatest possible extent. The most that has been achieved is 16 hours a day, while during periods of deterioration he may remain permanently on a mechanical ventilator for four or five days. The extent to which he has been able to use CPAP offers a rough indicator of his general well-being.

[31]Currently, DJ is not on antibiotics or other medication and is able to tolerate at least 12 hours of CPAP a day. He receives artificial nutrition and hydration via a nasogastric tube.

DJ’s level of awareness

[32]This varies in the light of his physical condition, but is fundamentally compromised by the stroke that he has suffered. Currently his level of awareness is as good as it has been since late May 2012 (although his physical state is undoubtedly worse as a result of the repeated difficulties described above).

[33]On 20 November, Dr Danbury observed DJ with his wife and son PJ and records this: MJ and PJ arrived by the bedside; DJ showed clear signs of recognition, smiled at their approach and mouthed what appeared to be words. He seemed to know appropriately when asked if he was feeling alright by his wife. She combed DJ's hair, during which DJ smiled. DJ was given a paper to read by his son. DJ turned the pages with his left arm. It is not clear to me whether he was reading any of the articles or looking at the pictures in the paper, however he smiled while looking at the paper. During this time he put on and took off his glasses. A nurse put an iPad on a flexible mount attached to a table which DJ could reach. PJ encouraged his father to play a simulated keyboard on the iPad. DJ was clearly interested in the iPad and its mount. He could not play any recognisable tunes on the simulated keyboard, even after his son demonstrated several simple melodies. PJ then opened a communication program with pictographic representations of moods (for example: happy face/sad face/angry face) with a written description under each picture. PJ asked his father to show him what emotion he was feeling. I did not see a consistent response from DJ. DJ appeared to enjoy watching videos on his son's phone. I asked whether DJ was having a good day or a bad day. I was informed that this was a fairly good day, but that he was easily fatigued.

[34]On 30 November, the Official Solicitor's case manager Ms Baker visited DJ. She observed him with his wife and three children. Her impression was that he looked generally quite bright and alert. She observed him to behave in the same way as Dr Danbury had seen. She also noted that he• held PJ’s hand

• kissed his wife when she leaned into him

• picked up one of his medical tubes

• looked at his wife when she moved around the bed

• put an object in his mouth

• turned his head to look at her (Ms Baker)

• mouthed what appears to be words when she spoke to him

• smiled at her when she spoke to him and when she said goodbye

[35]There is also recent evidence from medical staff of variable responses. For example• asked by a nurse whether he was comfortable, he nodded ‘yes’ and appeared to mouth ‘thanks’ and smile

• told by a nurse that his wife had telephoned, he smiled and made incomprehensible sounds

• he smiled and laughed when being sung to; when the nurse asked him if she was a good singer, he mouthed "yes" and nodded his head while laughing

• he ‘chatted’ with his family although it was not possible to understand what he was saying

• he smiled and tried to interact

• he laughed at a program on the iPad

[36]There are other records of DJ being unresponsive or far less responsive.

Minimally conscious state

[37]The treating doctors and Dr Danbury consider that DJ is in a minimally conscious state. This is a diagnosis describing a condition of severely altered consciousness in which minimal but definite behavioural evidence of self or environmental awareness is demonstrated. A valuable summary of disorders of consciousness and the process of diagnosis is set out in paragraph 41-48 of the judgment of Baker J in W v M

[2011] EWHC 2443

[2012] 1 WLR 1653

, where the distinction between coma, vegetative state and minimally conscious state is clearly explained.

[38]As Baker J says at paragraph 46, there is a spectrum of minimal consciousness extending from patients who are only just above the vegetative state to those who are bordering on full consciousness. I would add that to that extent the word "minimal" in the diagnostic label may mislead. To take DJ as an example, I accept that he qualifies for a diagnosis of being in a minimally conscious state, but his current level of awareness when he is not in a medical crisis might more accurately be described very limited rather than minimal.

[39]During his visit on 20 November, Dr Danbury performed an assessment using the Wessex Head Injury Matrix ("WHIM"). Once again, this is described in detail by Baker J at paragraphs 49-54. It is a sixty two-itemed hierarchical scale, which provides a sequential framework of tightly defined categories of observation covering an individual's level of responsiveness and interaction with their environment. Dr Danbury performed the assessment with DJ in the company of family members. He scored 32/62. This indicates severe neurological impairment.

The medical evidence

[40]Dr G is a consultant in critical care medicine. He gave evidence on behalf of the ten consultants and the senior nursing staff who have been responsible for DJ, and who all speak with one voice.

[41]Dr G described the course of DJ's time in hospital. He says that unfortunately progress has been minimal and that the overall trajectory is not upwards but is characterised by continuous setbacks. He particularly referred to the length of time that DJ has been in the critical care unit, to the inability to liberate him from ventilation, and to the fact that DJ is not able to participate actively in his physiotherapy. He has no core body strength and physiotherapy is done to him rather than with him. These are poor prognostic indicators.

[42]Dr G gives this opinion about DJ's diagnosis and prognosis.• His overall state is that he has suffered gross muscle wasting despite full feeding as a result of his dependent condition. He suffers from contractures (muscle rigidity). He cannot sit or stand for himself and there are days and weeks when he is unable to sit up. This is a very strong predictor, amongst others, of a poor likelihood of a successful discharge from the unit.

• Neurologically, he has suffered a stroke.

• He is completely dependent on artificial ventilation and requires regular tube suction. He has not breathed unassisted since July and he has an emphysematous lung.

• He has suffered a number of cardiac arrests, with negative consequences for the functioning of his heart.

• His kidney function is extremely fragile, with a maximum function of 20% or so. With each episode of infection, there is a repeated, inevitable decline.

• He is in a minimally conscious state. He functions better with his family than with members of staff, even those with whom he is familiar.

• Daily care tasks such as basic physiotherapy, suction and being turned in bed can cause discomfort, pain and distress. The contractures are similar to very severe cramps, and cause grimacing, raised pulse, breathing and blood pressure, indicating distress and pain.

• It is not possible to prevent further episodes of infection, particularly as DJ is on a ventilator. There is no effective treatment for pseudomonas (first detected in early June), and DJ remains extremely vulnerable. It is almost inevitable that he will face further infections leading to lowered blood pressure and the prospect of further multi-organ failure. The use of antibiotics has diminishing returns. Even if it were possible to liberate DJ from the ventilator, he would inevitably return to it when he next suffered an infection.

[43]Dr G outlined the difficulties with maximum blood pressure treatment, renal therapy and CPR, as described earlier in this judgment. He maintains his view that none of the three treatments is appropriate in any circumstances, saying that this was not for him a marginal conclusion. He said that if DJ were lucid and asked for the treatments, it would not alter his opinion.

[44]Asked about the fact that the Trust had originally sought to withhold antibiotics to combat the onset of infection, but had then agreed to provide them, he said that this was done in an attempt to acknowledge the concerns of the family. He agreed that since the proceedings began in September, DJ had been given courses of antibiotics on four occasions and that had he not received this treatment he would probably have died.

[45]Asked about the fact that CPR had been administered on 13 August, Dr G accepted that it had worked. Asked about the fact that inotropic drugs had been given on numerous occasions, he accepted that they too had worked.

[46]It was established that DJ has not required renal therapy.

[47]I found Dr G to be an impressive witness. I accept his unchallenged evidence about DJ's diagnosis and his prognosis. He knows DJ's condition well and described it clearly. His professional assessment of DJ's best interests was the result of careful thought and I also bear in mind that he speaks for his colleagues as well. These views are bound to carry considerable weight.

[48]Although they did not give evidence, the court received reports from another treating clinician, Dr C, and from Dr A, a doctor independent of the Trust who provided a second opinion in July.

[49]Dr C’s view is that with each deterioration, the burden of DJ's treatment is increasing and that overall such treatment is thought to be futile as DJ has no realistic prospect of sustained recovery and hospital discharge.

[50]Dr A was of the view in July that routine care should be continued but that escalation of treatments would not be appropriate unless there was real and rapid improvement, which was unlikely. He wrote: I would argue that further treatment for septic shock with hypotension and any artificial renal support would not be of overall benefit to DJ as such treatments would not return him to his former pleasures in life. Re: cardiopulmonary resuscitation, the risks of resuscitation would be that cardiac massage may result in broken ribs, further damaging weaning prospects and the very real risk of lack of oxygen to the brain as a result of any protracted attempt would surely not be in DJ's best interest given his interest in life. He concluded that "this is an extremely complicated case in terms of the actual diagnosis and course of events."

[51]Dr Danbury is a consultant intensive care physician. He described visiting DJ on 25 October and 20 November. His reports contain a detailed description of his examinations of DJ's physical state and state of awareness. On the first occasion DJ was in a trough in his health, while on the second occasion he was on a relative peak.

[52]Dr Danbury recommends that current treatment be maintained but that the three specified treatments should not be offered. He explained that decisions about intensive care have to be based on probabilities. He considered that DJ's chances of survival are very low and that he is unlikely to leave the critical care unit, let alone the hospital.

[53]He explained that if the trust application was successful, DJ would remain indefinitely on the ventilator, that he would suffer a major episode of infection and that this would lead to death due to hypotension (low blood pressure). It is not possible to say when this will occur, or whether it would be the result of one or more episodes of infection. He emphasised the unpleasant nature of the treatments involved.

[54]He would not revise his opinion unless matters have improved to the point where DJ was interacting with staff and actively participating in physiotherapy.

[55]I accept Dr Danbury's diagnosis and prognosis, which is consistent with that of the other doctors. However, I do not attach additional weight to his assessment of best interests for these reasons.

[56]In his first report of 28 October, Dr Danbury said this: The current treating clinical team have said that further treatment is futile and the family disagree. However, futility is a nebulous concept, which has different meanings depending on the individual and the situation. My preferred definitions are as follows:a. Physiological. If a treatment is given to a patient and that treatment does not have the expected physiological effect, then that treatment can be considered futile. … This is not the current situation, but in my view is the definition of futility used by MJ and JJ.

b. Probability. The likelihood of a given treatment curing the patient is low. In the case of DJ, I estimate that the chance of him surviving to hospital discharge is substantially less than 1%. This is the definition of futility most commonly used by clinicians. However, as a population-based statistic, it is less helpful when applied to individuals.

c. Economic. The definition is often used as a macro-health care level to make decisions about the cost-effectiveness of different treatments. This is the definition of futility used by the National Institute of Health and Clinical Excellence. In my view, the highly probable event is that DJ will die on intensive care. However, while he continues to respond to the advanced therapies available to the intensive care team, this may be some considerable time in the future -- possibly months, but is unlikely to be years. I believe the natural history of his current disease process is irreversible. Taken individually, each septic episode will be amenable to treatment, but it is my view that he will suffer further, progressive brain injury due to hypoxic, ischaemic damage Consequently, his level of consciousness will fall with time, but this will be a gradual, and drawn-out, progressive process. The end result of this process will be DJ's death. If the septic episode stopped immediately, then I feel he might live in his current state for years, but completely dependent on others for his activities of daily living. However, I see no compelling reason why the septic episode should stop occurring.

[57]In answer to the question: Do you consider that it is appropriate for the current treatment being provided to DJ to continue? a. No, I do not: i. For the reasons mentioned above ii. In the highly unlikely event that DJ survives his current illness, he will not be able to function as the musician he was previously due to the neurological deficits (hemiparesis) that he has developed. I have collected significant evidence that leaves me with the view that DJ would prefer to be dead rather than be unable to make music.

[58]The only basis for this last observation was a conversation with a nursing sister who says that DJ had apparently told another member of staff early in his admission to intensive care that he would prefer to die than not be able to play the guitar. Not surprisingly, DJ's family has been distressed at the use to which Dr Danbury put this snippet of information. In his second report and in his oral evidence he retracted without further comment the observation about making music.

[59]He was also asked about his recommendation of the withdrawal of current treatment from DJ. He accepted that the removal of ventilation and other supports would have led to DJ’s early or immediate death. Asked whether his change in position was the result of further thought or new information, he said both.

[60]No party sought to rely on Dr Danbury's initial, but still recent, report, and after what might be regarded as a false start, I do not feel able to rely on his later assessment of DJ's best interests.

The evidence of the family

[61]JJ is DJ’s daughter. Like her mother, she has filed detailed statements giving a close account of his medical condition and the view of the family as a whole. JJ described how she has visited her father for four hours every day, despite working full-time. She produced photographs showing him interacting with members of the family. She said that at the moment, he is not looking so unwell. He has put on some weight and looks more lively and alert. He cannot speak because of the tracheostomy but his face is expressive and the family is sure that he can lipread questions such as "why aren't you in work?" or “are you going out tonight?" She says that he worries about them. He is interested in family events, news, music and the radio. He is interacting more with the iPad.

[62]JJ says that she considers the idea of not giving her father the treatment appalling. At the moment, the only thing keeping him in the critical care unit is the ventilator. He has no medication and receives water and food through a tube.

[63]Like the rest of the family, JJ believes that the interim regime approved by the court makes the hospital less likely to offer appropriate treatment when an infection is imminent. She gave an example where she felt this had happened.

[64]The goal for her father is to recover fully and return home. Asked about the doctors' view that the likelihood of this was less than 1%, she referred to a number of other predictions that they had been given. At the end of May, the family was told to gather because he was thought to be about to die, but he did not. Every time he has had an infection, he has so far pulled through. She has never seen him in pain and feels that with treatment he will come to a better place. There will be ups and downs, but the gaps between episodes of infection have become wider.

[65]Asked whether she thought that all treatment should always be given to her father, she says that she thought they would know when it got to the point when it was too much. She did not think that this was the situation now.

[66]MJ said that her husband had been very alert at a celebration recently held for their golden wedding anniversary. She knows that he would never recover his previous quality of life, but feels that he gets a lot of enjoyment from seeing his family and also his close friends, who he recognises. She described a recent incident when one of the friends had joked that they should go and have a pint and DJ had pulled his bedsheet back with his handas if to get up.

[67]MJ felt that DJ's experience of cancer threw light on his values and wishes in the current situation. It had been a very rough time, but he had told her "this will not beat me". Even though the surgeon had been pessimistic, DJ had never said that he had had enough. The family believed that he would feel the same about his current predicament.

The law

[68]The first question is whether DJ has the mental capacity to decide on these forms of medical treatment himself. It is common ground that he does not.

[69]The second question is whether the application made by the Trust should be approved as being in DJ's best interests.

[70]Section 1(5) Mental Capacity Act 2005 provides that a decision made under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests.

[71]Section 4 provides a certain amount of guidance in relation to the factors to be taken into consideration when assessing best interests. The decision-maker must consider all the relevant circumstances and, in particular and so far as relevant to this case, take the following steps: 4(5) Where the determination relates to life-sustaining treatment he must not, in considering whether the treatment is in the best interests of the person concerned, be motivated by a desire to bring about his death. 4(6) He must consider, so far as is reasonably ascertainable:(a) the person's past and present wishes and feelings (and, in particular, any relevant written statement made by him when he had capacity)

(b) the beliefs and values that would be likely to influence his decision if he had capacity, and

(c) the other factors that he would be likely to consider if he were able to do so. 4(7) He must take into account, if it is practicable and appropriate to consult them, the views of… (b) anyone engaged in caring for the person or interested in his welfare.

[72]Human life is of value and our law contains a strong presumption that all steps will be taken to preserve it, unless the circumstances are exceptional. However, the principle is not absolute, and may yield to other considerations.

[73]Section 5 of MCA Code of Practice considers the approach to assessing best interests. Paragraph 5.31 reads:

“All reasonable steps which are in the person's best interests should be taken to prolong their life. There will be a limited number of cases where treatment is futile, overly burdensome to the patient or where there is no prospect of recovery. In circumstances such as these, it may be that an assessment of best interests leads to the conclusion that it would be in the best interests of the patient to withdraw or withhold life-sustaining treatment, even if this may result in the person's death. The decision-maker must make a decision based on the best interests of the person who lacks capacity. They must not be motivated by a desire to bring about the person's death for whatever reason, even if this is from a sense of compassion. Healthcare and social care staff should also refer to relevant professional guidance when making decisions regarding life-sustaining treatment.”

[74]I consider that this is an accurate statement and that one central question in the overall assessment of best interests is whether this is one of the limited number of cases where treatment is futile, overly burdensome to the patient or where there is no prospect of recovery.

The position of the parties

[75]On behalf of the Trust, Mr Sachdeva argues that DJ’s condition is progressive and irreversible. It is possible to keep the body alive but the treatment in question would be of extremely limited benefit to DJ if he again deteriorated, or even of no benefit. The effects of treatment are significantly burdensome, and the situation will only arise in the event of a significant deterioration. The fact that DJ has done better than expected is no reason to reject the unanimous medical view, which he described as compelling. He paid tribute to the commitment of DJ’s family.

[76]Ms Pepper, who represented the family most capably, despite receiving instructions at a very late stage, accepted that DJ lacks capacity and did not seek to challenge the medical diagnosis and prognosis. She expressed the family's fears that the making of a declaration will lead to future treatment becoming nonnegotiable. The family is not naive, but it does not want to be bypassed.

[77]Ms Pepper points out that much of the treatment that is now in question (blood pressure medication and CPR) has taken place and, despite the side-effects, has kept DJ alive. She notes that the application seeks approval for the withholding of any of the three forms of intervention, and not just all of them in combination. At the moment, DJ has some quality of life and, drawing on inner strength, derives some pleasure from it. He does not appear to be miserable, but retains an interest in life, including a sense of humour. She argues that the moment is not right to make declarations and that DJ deserves time.

[78]The Official Solicitor, through Mr Mylonas QC, gives full weight to the observations of the family, but concludes that the view of the doctors should be followed. He produces a balance sheet analysis of the kind recommended in these cases. This exercise is useful as a means of ensuring that no significant factor is lost to sight, although the description of a balance sheet should not evoke the idea that the various factors can be measured or counted.

[79]After discussion with counsel, the following general considerations are agreed as relevant to this decision. In favour of treatment in the event of deterioration:• Life itself is of value and treatment may lengthen DJ’s life

• He currently has a measurable quality of life from which he gains pleasure. Although his condition fluctuates, there have been improvements as well as deteriorations.

• It is likely that DJ would want treatment up to the point where it became hopeless

• His family strongly believes that this point has not been reached

• It would not be right for DJ to die against a background of bitterness and grievance Against treatment in the event of deterioration:

• The unchallenged diagnosis is that DJ has sustained severe physical and neurological damage and the prognosis is gloomy, to the extent that it is regarded as highly unlikely that he will achieve independence again; his current treatment is invasive and every setback places him at a further disadvantage

• the treatment may not work

• the treatment would be extremely burdensome to endure

• it is not in his interests to face a prolonged, excruciating and undignified death

Discussion and conclusions

[80]Fortunately for patients, families and those offering intensive medical care, the situation that has arisen in this case is unusual and, as Dr A observed some months ago, complicated. All concerned have sincere views. It cannot be said that one point of view is right and the other wrong. Both are reasonable and understandable and there is no question of anyone having won or lost the argument. Whatever is in DJ's best interests, the family and the doctors will need to work together to ensure that his remaining time is not overshadowed by continuing disagreement.

[81]In relation to DJ's medical condition and his prospects, the experience of the doctors is persuasive. The family's hope is for a miracle, but where medical matters are concerned, the court must have regard to the unanimous expert advice. In particular, the evidence of the burdens of this kind of treatment must carry heavy weight.

[82]Even so, that advice is bound to be based on an assessment of probabilities, and there will be a very small number of cases where the improbable occurs. Moreover, the assessment of best interests of course encompasses factors of all kinds, and not medical factors alone, and reaches into areas where doctors are not experts.

[83]In considering this matter, I have tried to guard against an unduly rosy overall assessment arising from the fact that DJ appears to be doing reasonably well at present, or to over-interpret his abilities or overstate his potential. It is necessary to assess the situation as a whole, and also to take one's thoughts to a time of acute deterioration, when the question would be whether treatment would be worthwhile in order to restore DJ to his current quality of life, at best, and very likely not even to that level.

[84]However, having weighed all these matters up, I have reached the clear conclusion that it would not be appropriate at this time to make the declarations that are sought, even though they have unanimous medical support and the backing of the Official Solicitor. My reasons are these:(1) Although DJ’s condition is in many respects grim, I am not persuaded that treatment would be futile or overly burdensome, or that there is no prospect of recovery. (a) In DJ's case, the treatments in question cannot be said to be futile, based upon the evidence of their effect so far. (b) Nor can they be said to be futile in the sense that they could only return DJ to a quality of life that is not worth living. (c) Although the burdens of treatment are very great indeed, they have to be weighed against the benefits of a continued existence. (d) Nor can it be said that there is no prospect of recovery: recovery does not mean a return to full health, but the resumption of a quality of life that DJ would regard as worthwhile. The references, noted above, to a cure or a return to the former pleasures of life set the standard unduly high.

(2) I consider that the argument in favour of a declaration significantly undervalues the non-medical aspects of DJ’s situation at this time. These arguments would undoubtedly carry the day in a case where quality of life was truly awful or non-existent. I cannot find that this is the situation that DJ is in, looking overall at the peaks and troughs and the likely future deterioration. Moreover, as Hedley J put it in NHS Trust v Baby X

[2012] EWHC 2188 (Fam)

, a life from which others may recoil can yet be precious. It may be of some note that counsel were not able to identify at short notice a case in which the withholding of treatment has been approved in a case where the patient’s quality of life was comparable to DJs, and where the family was in such clear opposition. In this case, DJ’s family life is of the closest and most meaningful kind and carries great weight in my assessment.

(3) Particular care must be taken when making declarations in circumstances that are not fully predictable or are, as here, fluctuating. Making full allowance for the unpleasant, painful and distressing aspects of treatment, I cannot conclude that it would be right to validate, in advance, the withholding of any of these treatments in all circumstances.

(4) I have balanced the various rights enjoyed by DJ and his family in reaching a conclusion: these encompass Articles 2, 3 and 8 of the European Convention on Human RIghts.

[85]I emphasise that this decision goes no further than to say that the court is not persuaded on the evidence before it that the withholding of these treatments is in DJ's best interests. I likewise emphasise that I am not deciding that the treatments must be offered. Not only is this not the court’s place, but it does not have the evidence on which to reach that conclusion.

[86]The outcome therefore is that DJ will continue to be cared for by his medical carers and by his family, who will have to discuss between them the issues that arise at the time that they arise. If there is another crisis, the doctors and the family will have to try to reach a common view. It may be that this will involve treatment of one kind or another; it may be that the family will agree that DJ has had enough. The matter will have to be discussed, and there is no easy answer. I recognise that this arrangement does not sit easily with an emergency decision about CPR, and for what it is worth I think it unlikely that further CPR would be in DJ's best interests. However, the case for making that an absolute decision at this time does not in my view exist.

[87]At an earlier stage in these proceedings, at the invitation of the court, the parties created an agreed statement of facts in case an emergency application became necessary. I would ask that this document is updated, while hoping that some common ground will now be found after further discussions.

[88]I end by paying tribute to the extremely skilful professional care that DJ has received from his doctors, nurses and other medical staff, and to the steadfast love and commitment of his family in his time of trouble. __________________