An NHS Trust v DJ & Ors

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.

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.

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.

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.

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.

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.

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:

Since 31 October, the Trust has not pursued the declaration in relation to the administration of intravenous antibiotics. The application now relates only to

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.

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."

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.

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.

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.

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.

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 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.

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

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.

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.

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.

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.

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.

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

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.

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

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

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.

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

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

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.

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.

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).

On 20 November, Dr Danbury observed DJ with his wife and son PJ and records this:

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

There is also recent evidence from medical staff of variable responses. For example

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

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.

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.

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.

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.

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.

Dr G gives this opinion about DJ's diagnosis and prognosis.

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.

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.

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.

It was established that DJ has not required renal therapy.

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.

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.

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.

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:

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.

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.

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.

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

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.

In his first report of 28 October, Dr Danbury said this:

In answer to the question: Do you consider that it is appropriate for the current treatment being provided to DJ to continue?

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.

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.

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.

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.

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.

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.

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.

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.

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.

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 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.

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

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.

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:

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.

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.”

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.

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.

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.

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.

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.

After discussion with counsel, the following general considerations are agreed as relevant to this decision.

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.

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.

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.

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.

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:

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.

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.

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.

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.