ON APPEAL FROM THE COURT OF PROTECTION
MR JUSTICE PETER JACKSON
Strand, London, WC2A 2LL
B e f o r e :
LADY JUSTICE ARDEN
THE RT HON. SIR ALAN WARD
| Aintree University Hospitals NHS Foundation Trust
|- and -
|(1) David James (by his litigation friend, the Official Solicitor)
(2) May James
(3) Julie James
Miss Claire Watson (instructed by Official Solicitors) for the 1st respondent
Mr Ian Wise QC (instructed by Jackson and Canter) for the 2nd and 3rd respondents
Hearing date: 21st December 2012
Crown Copyright ©
The Rt Hon. Sir Alan Ward:
" cardiopulmonary resuscitation;
invasive support for circulatory problems;
renal replacement therapy in the event of deterioration in renal function."
He refused to give permission to the hospital to place a "Do Not Attempt Resuscitation" instruction on DJ's medical records. Permission to appeal was refused by the judge but adjourned to the full court by Munby LJ on 17th December 2012 with the appeal to follow if permission were granted. Given DJ's parlous medical condition, we arranged an urgent hearing and on 21st December 2012, when time did not permit our giving reasons for our judgment, we allowed the appeal and made the declarations sought by the hospital.
The sad facts of the case
"400. So we have a condition now with [DJ] whereby he is chronically colonised with pseudomonas, which is well established within the critical care literature as an indication of a very chronic and debilitating condition. It is not amenable to any form of treatment, you cannot give prophylactic antibiotics, i.e. you can't keep giving him antibiotics.
401. Mr Sachdeva [counsel for the hospital]: Why not?
402. Dr G: A) We know it doesn't work. You just can't eradicate it so it's not a medical option at all. It's just not appropriate. But B) all that would do, is again engender a clinical status whereby we are encouraging the multi-organisms that are around in the environment to become more virulent, and we would just create a scenario whereby we would have an organism which would be completely unresponsive to treatment. So by using indiscriminate amounts of antibiotics where they're not clinically indicated, we would not be acting in [DJ's] interests because we would be setting him up and his immunological status up to fail, so it's not an option. So in terms of multiple sepsis episodes, we've got his mechanical status as in his physical environment, his chronic disease process, but also the overall picture is his malnourished state and his complete dependency on us. That again is an indication of his overall physiological status. He is extremely vulnerable to the external environment."
"299. Dr G: So if I were to give a sort of clinical picture [as of today] I would as critical care specialist look at the whole physiological status. So if I may I would look at first of all his overall, what I would call his clinical state. He is unfortunately in spite of feeding is chronically and grossly cachetic, which in terms he suffers with extreme muscle wasting due to his chronic dependence on intensive care nursing and other support. So he has huge muscle wasting. As part of that process he also has what we call contractures whereby he has muscle rigidity and that's again due to his chronic critical illness state and unfortunately his inability to respond to physiotherapy. So despite having full and active physiotherapy he has a number of issues with his physical wellbeing.
300. Mr Sachdeva: Well he can't participate actively in physiotherapy?
301. Dr G: No in order we do offer regular critical care physiotherapy which can either be passive i.e. done to the patient. In order for us to gain true rehabilitation it would be extremely beneficial for [DJ] to do what would be active participation and unfortunately because of the nature of both his illness and his neurological status he is unable to work with our physiotherapist. So we do actively attempt rehabilitation but he does not have the capacity to respond to commands and to respond to the physiotherapy request and that would cause considerable concern to us because although this occurs on a regular basis one would assume that if you did not have an ability to recognise basic commands, the repetitive motion of physiotherapy would be one which could become, sort of, almost hardwired almost subconsciously. Unfortunately [DJ] is unable to do any of these very repetitive treatments and so the attending team are doing treatments to [DJ] rather than with [DJ]."
"It is likely that this deterioration has been caused by a further episode of chest infection. His chest x-ray series shows a progressive deterioration with extensive changes in both lungs consistent with pulmonary fibrosis or scarring of the lungs on a background of severe emphysema. It is likely that this has resulted from repeated chest infections combined with the effects of prolonged mechanical ventilation
DJ may or may not survive this acute deterioration in his condition. Even if he does survive this acute episode there remains no realistic prospect of him making sufficient recovery to ever leave the critical care unit let alone making sufficient recovery to be discharged from hospital to go home.
All the clinical team remain convinced that provision of further interventions as listed in the application to the Court of Protection would not be in DJ's best interests and will cause him greater suffering, while conveying extremely limited benefits. Attempting cardiopulmonary resuscitation (CPR) in the setting of this picture of clinical deterioration is highly unlikely to be successful, and in the unlikely event that it is successful it is likely to leave DJ with greater neurological (brain) injury in addition to other organ damage.
In the 11 years I have been a critical care consultant at [this hospital] to my recollection, DJ has been the only patient to stay on the unit for more than 6 months. It is extremely rare for patients to experience such a prolonged stay in a general critical care unit, and when this does happen it is usually in the context of a reversible pathology (i.e. when there is a reasonable prospect of recovery). In most cases of patients with progressive deterioration and such a poor overall prognosis as DJ has, consensus is reached between the clinical team and the family in the best interests of the patient to withdraw or limit organ support intervention. In this case this has not been possible.
Although DJ is currently comatose, or semi comatose, the efforts to support his breathing and blood pressure yesterday clearly caused him great distress and discomfort. Given the extent of the damage to his lungs now it is likely that he will experience frequent sensations of shortness of breath or inability to "catch his breath". He requires frequent (as often as hourly) suctioning of his tracheostomy tube which causes coughing and discomfort. The intravenous vasopressor therapy may cause a feeling of anxiety. While supporting his blood pressure and helping perfusion of the kidneys and brain, it is also likely to cause further damage to other tissues and increase strain on the heart. He is extremely weak and unable to move or adjust his own position. He is therefore entirely dependent on nursing staff, even just to turn him or to adjust his position. He cannot communicate in any meaningful way and therefore cannot communicate whether he is uncomfortable at any time, other than by grimacing. This is likely to result in significant periods of discomfort and a feeling of total helplessness. He undergoes regular physiotherapy which he is unable to actively participate in. This causes him discomfort. Hypercalcaemia due to bone demineralisation is associated with bone pain.
It is well documented that patients with critical care illness suffer from disturbing delusions and hallucinations. The incidence of psychological trauma, similar to post-traumatic stress disorder, is estimated to be in excess of 60% in survivors."
"1. She wants him to receive such treatment and care as will enable DJ to live as long as and as comfortable a life as possible and to enjoy the love and company of his family.
2. She would not want to see him suffering or in pain and if she thought he was (but she does not) she would agree to the withdrawal of treatment and to appropriate end of life care."
Mr Wise, like Miss Claire Watson instructed by the Official Solicitor, had little time to prepare for the hearing but I pay tribute to them for the care they took, for the cogency of their submissions and for having done everything that could have been done fully and properly to represent DJ and the family.
"372. So I would concur completely with Dr D's statement [Dr D was the Consultant Intensive Care Physician instructed by the Official Solicitor] that [DJ] is in a minimally conscious state but I would also concur strongly with the family's observations that he can have some degree of interaction which is obviously of great benefit to the family. But as a professional that diagnosis has been consistent and there has been absolutely no evidence at any time and I do not project in the future that there would be any evidence to suppose that he would be able to rise from that current status."
Cross-examined he said:
"573. If I am asked to give a figure or considered opinion from the critical care consultants that we've got are less than 1% chance of ever getting [DJ] discharged from the critical care unit
575. His overall clinical state and the evidence of previous failed attempts so the historical evidence plus his current state, plus our expertise in projecting the future would lead us to the conclusion of his that our capacity to liberate him from the ventilator is pretty negligible."
"500. Mr Sachdeva: Just to summarise, if you were told to assume that he gets a great deal of pleasure in his life, the fact that he was a successful musician before, [and that there] isn't any reason to think he doesn't still gain some substantial enjoyment from his current life and that his family, let's just assume for the moment [we] are correct in stating that he would definitely, if he were able to communicate, say that I would really likely to have all the treatment that you can possibly give me. So setting aside the neurological inability to communicate, what effect would that have on your decision as to whether you would offer these treatments in your clinical judgment?
501. Dr G: It's a question I've considered daily looking after [DJ] and all my colleagues have. We would of course take that matter extremely seriously. It would cause us to have a complete review and consideration of that further information. But if asked that specific question and this is hypothetical, so obviously I am giving an opinion without actually being able to hear that and discuss that directly myself so it would go without doubt that we would take that extremely seriously as the clinical caring team. Notwithstanding all of those, if asked now what my opinion would be, it would still be that the treatment we are proposing would be inappropriate and I would be explaining that and my rationale to [DJ] and explaining why I thought it would be deeply inappropriate for me as the attending clinician and the rest of my colleagues to offer these treatments, so I would go through that process that we have undergone now to explain why I would say that to another human being. It would be my professional obligation to do that and my professional opinion would still stand that the types of, and the proposed treatment that me and my colleagues feel is the right course of medical action to take would still stand."
The treatment DJ was being given and the treatment the hospital wished not to give him
"12. 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."
"415. Dr G: If I may I would leave this cardiopulmonary resuscitation to the as the final one because there's a, in my opinion, a logical sequence of clinical decision making process.
416. Mr Justice Jackson: Well let's reverse them in that way, how would you start?
417. Dr G: Sir, I would start with what has been the consistent pattern of deterioration, both with [DJ] and with a wider critical care patient which would be a septic episode so an infection of some sort, whether it be a bacteria or virus, and often we don't ever determine what is the causative factor because for obvious reasons, we don't wait and it's not always possible technically to determine what the specific organism is. But nevertheless, if we see signs of low blood pressure, high heart rates and low urine output with other signs of temperatures and blood tests and so on, we can make a clinical diagnosis of sepsis. In my opinion and in the consensus of opinion of all ten critical care consultants, in [DJ's] case he doesn't respond to fluid, so the fluid (inaudible) has been given which are very rapid administration of fluid above and beyond what he is currently getting as baseline. If he doesn't respond to that or can't respond to that, it'd perhaps be the better phrase and then we have persistent low blood pressure which would then, by definition, cause further consequences. What we would consider at that point is would we or should we offer the well we are terming it invasive circulatory support. In my opinion and in the consensus opinion of my colleagues, in order to do that we would have to weigh up all the other issues that we've alluded to before, we would have to put in a very large drip, similar to the one we needed to renal replacement therapy. You can give treatment through smaller drips, but again that is sub-optimal and again we have to look at the overall picture and there may be a technical possibility of us doing that but we'd have to make a decision based on that as what was our intended consequences. So we'd start off with that form, would we do or should we do that.
421. We are attempting to restore normal blood pressure, normal oxygen levels to all the peripheries and to all the vital organs.
425. We are delivering very potent drugs, which the medical term can include vasopressors and inotropes, quite often when we talk to relatives we use the words drugs such as adrenaline
427. This can narrow the blood vessels, it can tighten them up. So what we would suggest it would do is it would decrease the calibre of the vessels within the body and it can increase the functionality of the heart. It will make the pump work better so the heart works as a more efficient pump and it can increase the rate at which the heart works. So not only will it function better, it will work quicker. They are the intended benefits of such a drug, they have very severe negative or potentially negative consequences which is why they are drugs which can only be used in a by critically care trained nurses and doctors and usually only exclusively in an environment that is able to support that so classically only in a critical care environment.
441. Mr Sachdeva: What are the negative consequences of using vasopressors and inotropes?
442. Dr G: There's the I suppose inappropriate perhaps use of the word aggressive. The way we use it is a technical process of subjecting a human being to discomforting pain with needles. That's the clear one, it's the smaller ones in the limbs are painful and like having any form of blood test, the larger bore devices we need to use we sometimes call them central lines, but the lines that he uses to provide either kidney support or indeed very invasive blood pressure. But the central lines are very discomforting, they require or usually require the administration of a large amount of local anaesthetic because they are extremely painful to [introduce]. There's a large number of technical challenges in patients who are malnourished, who've had lots of previous attempts, the technical challenges become more and more cumulative because the vessels themselves become blocked. They become potentially infected, the skin gets there are obviously holes for the needle itself and there are also the requirement for us to put sutures, stitches to secure the device. There's a requirement of constant dressing, just the sort of basic housekeeping of tending these lines is pretty distressing.
445. Mr Sachdeva: Is there more strain on the heart?
446. Dr G: There is indeed, there are very significant deleterious effects indeed when you can cause arrhythmias so you can put the heart into abnormal pacing. You can cause the heart itself to have very serious consequences from very fast rates to actual rates that are not compatible with life. It is very well recognised that these treatments can cause the heart to do this.
447. Mr Sachdeva: 13th August he had asystotlic cardiac arrest having had vasopressors. Do you think there's a link there?
448. Dr G: At the time I'd have been unable I would've have been unable to I don't know.
449. Mr Sachdeva: Is it possible?
450. Dr G: It is possible. We see very regularly with very potent drugs such as adrenaline, raw adrenaline that it does sensitise the heart to abnormal rhythms and in the heart stops. The other consequences are, as indeed DJ's case, as we are tightening the calibre of the blood vessels in order to sort of preserve function to the very delicate organs as in the kidney, what we do is we ask the body to by-pass the peripheries and [DJ] has necrotic toes, he has a number of black toes which are as a result arguably or actually probably very consistently of the treatment that we've administered to him. He's got black toes which are a very clear and visible reminder to me, as a clinician who cares for him, of the negative effects of the treatment that I would offer a patient."
"324. My guess would be that his kidney reserve is no more than that [he has got 20% kidney functioning]. It's extremely low, difficult to give a specific percentage but we know that the blood tests when they do show damage not just showing beginnings they're sort of at an end stage of process.
328. [Sepsis] consistently, repeatedly removes that reserve until there is no reserve, so the inevitability will be that chronic multiple sepsis episodes will lead to a likely chronic dependence on kidney support so we will see, unfortunately, if further episodes do occur a repeated and inevitable decline in kidney function.
332. We performed a form of renal support that is only suitable in the short term. There is a form of renal support, the dialysis which is more for an outpatient long term condition.
339. Mr Justice Jackson: And this is a large tube?
340. Dr G: It is indeed. It's a very large bore tube which is technically difficult to place and it has to go in one of the large veins in the body so either in the neck, below the collar bone or at the top of the groin. There are only 6 sites where one can technically insert this device."
"452. In addition to the sort of challenges that we've already discussed, renal replacement therapy requires the blood to be thin. As the blood is processed through an artificial I guess an artificial kidney, it needs to be thinned otherwise the blood will clot and the machine will not work. In order to administer a constant blood thinning medication, we have to do repeated blood tests, that's in order to make sure we've got the level appropriate.
453. Mr Sachdeva: Is that warfarin or?
454. Dr G: It's similar, it's a drug called Heparin and it needs to be given as a constant infusion, requires some careful titration because there is significant and very real risk of bleeds. So that can be bleeding from where we've actually just put the large bore canula in, but in particular, in our critically ill patients bleeds from a stroke point of view.
455. Mr Sachdeva: He's had an ischaemic stroke before?
456. Dr G: He has indeed.
457. Mr Sachdeva: This might give rise, I suppose to a haemorrhagic type of stroke?
458. Dr G: There are a number of different causative pathways for a stroke and one of those we consider when we're balancing the risks and benefits, is the possibility of a bleed type stroke, as you say a haemorrhagic stroke. And also within a critically ill population, they are extremely prone to bleeding from the digestive tract so he's on constant medication to try and limit the possibility of a bleed from the GI tract, i.e. an ulcer or an erosion within the stomach or something within the stomach or gullet. One of our concerns would be that blood thinning medication could precipitate that as a type of adverse consequence, and I guess the one that I would be personally really concerned about would be that the temperature imbalance that is caused by putting somebody on renal replacement therapy in essence because you are taking a large amount of our patient's circulating volume to the external environment and then returning it. What we see very commonly is a shivering or cold response, that is one we try and mitigate against but we see very frequently so we induce a very unpleasant experience. Indeed we just we make patients shiver and make them feel very cold.
459. Mr Sachdeva: Well what would it be like? How cold would one feel? Have you any sense?
460. Dr G: Cold enough to at least say you know a form of shaking response. So if you were to see a member of the public who is out and who is exhibiting you know clear distress from cold, shaking and so on.
461. Mr Sachdeva: How long would it go on?
462. Dr G: For the duration of therapy.
463. Mr Sachdeva: Which is how long?
464. Dr G: We use renal patient therapy usually in excess of sort of 8-12 hours would be a short course normally. It would be on average about sort of 24 hours course.
465. Mr Sachdeva: And they'd shiver throughout the 24 hours?
456. Dr G: They can.
467. Mr Justice Jackson: When you say a course, this is 24 hours for example in a row?
468. Dr G: It will be 24 hours then a response, yeah, it's likely when you usually and I suppose I shouldn't have used in the terms with [DJ], if we are in a position of needing renal replacement therapy, it would be highly unlikely to project this would be short course. It would highly likely because because as discussed of his very minimal reserve, once he became once he knew it was renal replacement therapy, there was a high likelihood it would become a dependency state.
469. Mr Justice Jackson: So although it wouldn't be identical by the manner of means in its delivery and so forth it would be rather like ventilator equation?
470. Dr G: That would be my clinical assessment.
471. Mr Sachdeva: He might need it continuously?
472. Dr G: That would be a very likely clinical scenario. It's highly likely that
473. Mr Sachdeva: He is very likely to need?
474. Dr G: Very likely if the treatment is required it would be it would be difficult to see the scenario whereby it would be a one-off form of treatment given the overall clinical trajectory of [DJ's] care over the last 5 months.
475. Mr Sachdeva: Once he had been on it there would be no way of taking him off it if his kidneys weren't themselves functioning well enough?
476. Dr G: We would make a it would be judged on the clinical context obviously but the overall clinical scenario in my opinion would be that once once we had requirements for renal replacement therapy, it would inevitably lead to a state of chronic dependency on that form of support."
"478. The way I process the risks and benefits would be to suggest that if the treatment as described, so the blood pressure would deteriorate that would require invasive circulatory support which would then cause renal failure which would then require renal replacement therapy. If in my clinical opinion that was treatment that would not be indicated, it would then, in my mind be clear to see a continued deterioration of the patient that resulted in their heart stopping. If we got to that scenario, it would then seem to me very clearly and in appropriate [sic I think the transcript should read "very clearly an inappropriate"] decision to offer active resuscitation. And my clinical rationale would be that if while a patient is deteriorating but the heart hadn't stopped, we thought it was inappropriate to offer this form of therapy because it was not going to be of overall benefit to the patient. Then it would seem completely incongruous then to offer very aggressive therapy.
484. the literature would very clearly state that patients who had not regained their normal function status and who have continued to be critically ill, the continued trend would be that even if we were to offer cardiopulmonary resuscitation, the chances of successful resuscitation are diminishing each day as he remains critically ill. So in my opinion, not only would be it be highly unlikely to be successful, it would also not be an appropriate course of treatment as we would not deem the what I would call the preceding forms of treatment I would normally consider for a patient, i.e. in the case of cardio support and the renal support. If we weren't considering those options to then do a cardiopulmonary resuscitation, would seem a medically incompatible decision process.
485. Mr Sachdeva: Assuming that the other two were to be thought appropriate, CPR is a further step.
486. It is a further step and in patients who are on critical care and we are assuming that a patient or indeed [DJ] is on invasive circulatory support, he's on renal replacement therapy. If they do suffer cardiopulmonary resuscitation the success rates are almost negligible that the decision making process we it would be difficult to envisage a scenario where we would actively offer that as a form of treatment. And indeed the act of performing cardiopulmonary resuscitation is one which is deeply physical, it involves the compression of the human chest by a skilled healthcare professional. The force of the compression in a significant number of cases causes rib fractures, part of the resuscitation process that involves manually inflating the lungs using essentially a very crude but very skilled process of forcing air into a human's lungs and administration of a drug similar to adrenalin, would be the standard care.
487. Mr Justice Jackson: Administered how?
490. Ideally it would be administered by intravenous access so we would need to gain access which would be technically very difficult if it wasn't already in place. One can in theory give the drug down the breathing tube although that is far from effective and not necessarily recommended really, but if we were to offer this with the intention with the right intention which is to do it to our best clinical capacity we would have to attempt to gain access which would be which would likely be very challenging given the crisis nature of this condition.
491. Mr Justice Jackson: What is the sort of time period typically that that decision might have to be made within?
492. It would have to be done instantaneously, if it's not a cardiac arrest situation is a medical emergency. There is no time here, indeed the time is of the essence. If we are unable to gain IV access, if we are unable to restore the heart, the progressive nature of the heart stopping means the longer it takes before the heart starts the less likely it is to start.
493. Mr Justice Jackson: Are we talking about seconds or a minute or two?
494. Dr G: Yes my Lord.
496. Mr Sachdeva: I've just one further question. Is there anything else unpleasant from the person's perspective about CPR apart from compressions and the adrenaline? You're shocked sometimes.
495. You're shocked, so depending on the nature and if the heart either stops in terms of no recordable electrical activity, or there are scenarios whereby there is electrical activity but it's not compatible with life. In the second scenario we administer electric therapy. We place very large pads on the chest of our patients and we administer direct electrical currents which causes or the intention is to cause a re-boost, almost like a reprogramming of the heart's electrical activity. But obviously it causes the whole body to be subject to that electrical activity which it's clear to anybody attending is a very potentially a very distressing thing to administer."
The judgment under appeal
"An act, or decision made, under this Act for or on behalf of the person who lacks capacity must be done, or made, in his best interests."
S. 4 of the Act gave some help in relation to the factors to be taken into consideration when assessing best interests and he reminded himself of these subsections:
"4(2) The person making the determination must consider all the relevant circumstances and, in particular, take the following steps.
(3) He must consider-
(a) whether it is likely that the person will at some time have capacity in relation to the matter in question, and
(b) if it appears likely that he will, when that is likely to be.
(4) He must, so far as is reasonably practicable, permit and encourage the person to participate, or to improve his ability to participate, as fully as possible in any act done for him and any decision affecting him.
(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.
(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.
(7) He must take into account, if it is practicable and appropriate to consult them, the views of
(a) anyone named by the person as someone to be consulted on the matter in question or on matters of that kind,
(b) anyone engaged in caring for the person or interested in his welfare,
as to what would be in the person's best interests and in particular as to the matters mentioned in ss (6).
(10) "Life-sustaining treatment" means treatment which in the view of a person providing health care for the person concerned is necessary to sustain life.
(11) "Relevant circumstances" are those-
(a) of which the person making the determination is aware, and
(b) which it would be reasonable to regard as relevant."
"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."
The judge held:
"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."
"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 all 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 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(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 on 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 a resumption of a quality of life that DJ would regard as worthwhile. The references, noted above, to a cure or to 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 deteriorations. Moreover, as Hedley J put it in NHS v Baby X  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 DJ's and where the family was in such clear opposition. In this case, DJ's family life is of the closest and most meaningful kind that carries great weight in my assessment.
(3) Care must be taken in making declarations in circumstances that are not fully predictable or are, as here, fluctuating. Making full allowance for the unpleasant, painful and distressing aspect 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 this 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 that 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 the 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 arise."
"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."
(1) Having found that receiving further CPR was not in DJ's best interests, failing to grant a declaration to that effect.
(2) Applying a test requiring the quality of life to be "truly awful or non-existent".
(3) Eliding the test of best interests being futile, overly burdensome and/or there being no prospect of recovery.
(4) Failing to find that the treatments were futile, overly burdensome and that there was no realistic prospect of recovery.
(5) Placing decisive weight on the family's evidence of DJ's likely views.
(6) Finding the pre-condition of there being "a significant clinical deterioration" to be too uncertain to justify declarations being made.
(1) The goal may be to prevent the patient's imminent death from the particular ailment which the treatment is designed to overcome (to give again an example in crude and unscientific terms, CPR is necessary and effective in the case of a heart attack to get the heart beating again).
(2) Having prevented imminent death, the goal may be to prolong life even though it is recognised that it will be for a relatively brief time only.
(3) The goal may be to delay death even though it will not result in any significant alleviation of the patient's suffering.
(4) The goal may be to provide for the patient a minimum quality of life for the remainder of his life.
(5) The goal may be to allow the patient to achieve the goal (or the wish) he has set for himself.
(6) The goal may be to secure therapeutic benefit for the patient, that is to say the treatment must, standing alone or with other medical care, have the real prospect of curing or at least palliating the life threatening disease or illness from which the patient is suffering.
"It is up to the doctor or healthcare professional providing treatment to assess whether the treatment is life-sustaining in each particular situation."
In other words the focus is on the medical interests of the patient when treatment is being considered to sustain life. That is not to say the doctors determine the outcome for it is the court that must decide where there is a dispute about it and the court will always scrutinise the medical evidence with scrupulous care. Here we were necessarily dealing with a situation where life was ebbing away. In the context, therefore, "no prospect of recovery" means no prospect of recovering such a state of good health as will avert the looming prospect of death if the life-sustaining treatment is given. DJ had a less than 1% chance of ever being released from the intensive care unit. He was slowly dying, not "actively dying", as clinicians might describe his state had he been in such a condition that the Liverpool Care Pathway might have become appropriate. But there was no prospect whatever for this unfortunate brave man ever overcoming the multiple organ failure from which he had suffered with exponentially weaker prospects of recovery. This is a further reason for allowing the appeal.
" 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."
Against that background, what conclusions can be drawn about DJ's wishes and feelings and particularly his wishes and feelings as to whether he should be given life sustaining treatment in the condition he is in?
"Human life is a basic, intrinsic good. All human beings possess, in view of their common humanity an inherent, inalienable, and ineliminable dignity.
To sum up, the doctrine of the IOL (the Inviolability of Life) holds that we all share, in virtue of our common humanity, an ineliminable dignity. This dignity grounds our "right to life". The principle of the IOL holds in essence that it is wrong to try to extinguish life."
His theory is that:
"The IOL distinguishes what we may call "quality of life benefits" (used to judge whether a treatment would be worthwhile, comparing its benefits and burdens) from "beneficial Quality of life" (QOL) used to judge whether a patient's life is or will be "worthwhile"."
He defines "Quality of life" (QOL) in this way:
"On this approach, there is nothing supremely or even inherently valuable about the life of a human being. The dignity of human life, such as it is, is only an instrumental good, a vehicle or platform for a "worthwhile" life, a life in whose value resides in meeting a particular "quality" threshold (howsoever defined). The lives of certain patients fall below this threshold, not least because of disease, injury or disability. This valuation of human life grounds the principle that, because certain lives are not worth living, it is right intentionally to terminate them, whether by act or omission. A core principle, therefore, is: "One may try to extinguish the life of a patient which is of such poor quality as not to be worth living"."
That QOL approach may, or may not, be an entirely fair way of putting the opposite view which is held particularly by Peter Singer (not Singer J), John Harris and David Price. I hope I can fairly say that they take an utilitarian view in that they countenance the consideration of whether the particular life is worth living. They would reject the idea that all lives have equal value. A new contribution to the debate is End-of-Life Decisions in Medical Care, 2012 by Stephen W. Smith who considers that it is important to examine the meaning of the word "life". He draws on Ronald Dworkin's Life's Dominion at pp. 82-83 where he provides two possible ways in which we might define life. The first way, which the ancient Greeks called zoe, is the physical or biological life, the second called bios means life as lived. In other words, as Dworkin says, the "actions, decisions, motives and events that compose what we now call a biography". So Smith concludes at p. 319:
"Determining the value of life was also a complex rather than a simple method. I have argued that the conceptions generally used vitalism, the Sanctity of Life and the Quality of Life provide too simplistic a recognition of the ways in which our lives are valued. Our lives have value not simply because of the fact that we exist or because of the things we can do with that existence. Instead, we value our lives because of a combination of those two elements. Our existence matters in a number of crucial ways but that is not the only way in which our lives have meaning. Additionally, the ways in which we use our lives provide additional value to our mere existence and the biographical aspects of the way of our lives have value and meaning can be as important as, and sometimes even more important than, the fact of our existence."
"In our view this supports the proposition that Hedley J was right to observe that the concept of "intolerable to the child" should not be seen as a gloss on, much less a supplementary test to, best interests, it is, as the judge observed, a valuable guide to the search for best interests in this kind of case."
Thus it seems to me that a judgment on whether life is intolerable is a judgment on the quality of that life. It must, therefore, play some part in the assessment of best interests (as does the worthwhileness of treatments) but only as one of the many circumstances to take into account. Viewed objectively, DJ's life in the first months of his time in hospital was tolerable enough to require that all these treatment be tried and even that they be tried again but sadly the stage was eventually reached, as the medical evidence accepted by the judge demonstrated, that DJ's life would become quite intolerable were he to suffer a further crisis leading to a further setback in his health. Were that to happen the risks and burdens of trying to keep him alive would be disproportionate to the diminishing opportunities for him to take pleasure from his family. Thus there was no longer the need to try, try and try again to restore him to the state he was bravely fighting to achieve.
Lady Justice Arden:
"Decisions taken on behalf of a person lacking authority require a careful, focused consideration on that person as an individual."
Lord Justice Laws: