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An NHS Trust v SK (Best Interests Decision - Palliative Care) [2016] EWHC 2680 (Fam)

Judgment of MacDonald J determining whether it was in the child’s best interests to receive palliative care against his parents’ wishes.

MacDonald J was concerned with an 11-year-old boy, "SK", suffering from end stage high grade recurrent osteosarcoma and metastatic lung disease.

The issue was whether SK should now receive palliative end-of-life treatment and care. The parents objected to that course of action as they did not accept SK's diagnosis or that he was dying.

The NHS trust sought a declaration that it was in SK's best interests to receive a palliative treatment plan which included psycho-oncology to assist SK in coming to terms with his diagnosis, palliative chemotherapy (should SK agree to the same) and pain medication. 

SK's treating consultant paediatric oncologist advised that SK appeared in pain and was likely to experience unremitting and excruciating pain without active management of the tumour. SK denied he was in pain despite the doctor's observations of a physical presentation suggesting otherwise.

The mother fervently disputed the diagnosis and the fact that SK was dying. In her view SK suffered from myelitis, leprosy or "bone TB". SK's views had become tied to his mother's. The court heard evidence that SK did not want to be treated with chemotherapy because he had been told by his mother that this is what caused his condition in the first place. SK was also now convinced that pain medication would kill him although he had previously agreed to it after a balanced explanation by his doctor.

The Guardian was clear that SK was not "Gillick competent" in respect of his treatment as he was overwhelmed by his mother's fixed views. The court agreed with this assessment.
 
Macdonald J was satisfied there was no proper evidential basis for doubting SK's diagnosis. This diagnosis had been confirmed by at least five biopsies and numerous second opinions, including one sought by the mother from an expert in the USA.  Further, the court was satisfied that the diagnosis was terminal and that if SK's pain was not treated appropriately, it would become unbearable.

The court endorsed the Guardian's analysis and declared that whilst palliative chemotherapy is in SK's best interests, SK should not be compelled to accept this treatment in a way which would put him in opposition to his mother during the final weeks of his life. The judge found that it was plainly in SK's best interests to receive psycho-oncology to assist with the psychological impact of his situation.

Finally, the court found it was necessary to include in the order a provision prohibiting the mother and father from preventing or impeding the palliative treatment plan. Though the hearing and judgment took place in November 2016, publication was delayed to avoid distress. SK died in January 2017.

Summary by Hannah Gomersall  barrister, Coram Chambers

____________________________

Neutral Citation Number: [2016] EWHC 2860 (Fam)
Case No: FD16P00586

IN THE HIGH COURT OF JUSTICE
FAMILY DIVISION


Royal Courts of Justice
Strand, London, WC2A 2LL

Date: 04/11/2016

Before:

THE HONOURABLE MR JUSTICE MACDONALD

- - - - - - - - - - - - - - - - - - - - -

Between:

An NHS Trust Applicant
- and –
BK
First Respondent
-and-
LK Second Respondent
-and-
SK
(By his Children's Guardian) Third Respondent

Mr Mungo Wenban-Smith (instructed by the NHS Trust) for the Applicant
The First Respondent appeared in person
The Second Respondent appeared in person
Ms Melanie Carew
(of CAFCASS Legal) for the Third Respondent

Hearing dates: 3 and 4 November 2016
- - - - - - - - - - - - - - - - - - - - -

Approved Judgment

Transcribed by BEVERLEY F. NUNNERY & CO.
(a trading name of Opus 2 International Limited)
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MR JUSTICE MACDONALD
This judgment was delivered in private. The Judge has given permission for this anonymised version of the judgment (and any of the facts and matters contained in it) to be published on condition always that the names and the addresses of the parties and the children must not be published.  For the avoidance of doubt, the strict prohibition on publishing the names and addresses of the parties and the children will continue to apply where that information has been obtained by using the contents of this judgment to discover information already in the public domain. All persons, including representatives of the media, must ensure that these conditions are strictly complied with.  Failure to do so will be a contempt of court.

Mr Justice MacDonald :
 
INTRODUCTION

1. Where a dispute arises between parents and treating doctors regarding the proper course of treatment for a child the court may grant a declaration under its inherent jurisdiction, or grant an order under the Children Act 1989, providing that treatment in accordance with the recommendation of the doctors should take place on the grounds that it is in the child's best interests (see Re B (A Minor)(Wardship: Medical Treatment) (1982) 3 FLR 117).  The right and power of the court to make such an order only arises because the child lacks the capacity to make the decision him or herself (An NHS Trust v MB [2006] EWHC 507 (Fam)).  It is important to note that the court has no power to require doctors to carry out a medical procedure against their own professional judgment.

2. I am here concerned with the best interests of SK, an 11-year-old boy who is suffering from end stage high grade recurrent osteosarcoma and metastatic lung disease.  The overwhelming weight of medical evidence before the court is that his condition is terminal, although for reasons I shall come to, this is not accepted by his mother and is a prognosis that his father clearly struggles to accept.   The primary issue before this court is whether SK should now receive the palliative care treatment regime proposed by his doctors as a means of managing his symptoms and pain as his life comes to an end, and potentially prolonging his period of survival, or whether the objections of his parents to that course of action, and their proposals for an alternative based on their belief that he is not dying, should prevail.

3. The Trust seeks a declaration that it is in SK's best interests to receive palliative care treatment for his recurrent osteosarcoma in accordance with the treatment plan formulated by the Trust.  In summary that plan is as follows:

i) The provision of psycho-oncology to assist SK to come to terms with his situation and his terminal diagnosis and to allow him to consider his palliative treatment options;

ii) Palliative intravenous or, alternatively, oral chemotherapy with a view to arresting or shrinking his tumour as a means of controlling pain;

iii) Symptom management, including paid medication, holistic pain management and regular wound cleaning;

iv) Such further treatment and nursing care as may be appropriate to ensure that SK suffers the least distress and pain at the time and in the manner of his dying.

4. It is important to note that the Trust contends that the declaration in respect of palliative intravenous or, alternatively, oral chemotherapy should be made expressly subject to SK agreeing to co-operate with such treatment.  The Trust does not seek by that contention to suggest that SK is 'Gillick' competent in relation to his treatment.  Rather the Trust seeks to recognise the fact that, as the Trust argues, SK has become heavily drawn into his mother's views on treatment for reasons I will come to, and within this context to give effect to the conclusion of the Children's Guardian, Mr Power, that seeking to force SK to accept treatment during the final weeks of his life in a manner that will place him in opposition to his mother, from whom he will draw valuable emotional support during that period, cannot be said to be in his best interests.

5. The alternative plan advanced by the parents was not entirely clear from the oral evidence and submissions of the mother but is tolerably clear when account is taken of her written evidence.  That alternative course of action advanced by the mother (and, although to a lesser extent, by the father) appears to be as follows:

i) SK's treatment should be managed at the Royal National Orthopaedic Hospital and not by the Trust which brings this application and the Trust that is responsible for the provision of symptom control and palliative care (albeit the mother appears to concede that these Trusts could remain involved);

ii) SK's treatment plan should be flexible and respond to developments in his condition rather than being a plan that acknowledges at this stage a need for palliative care and makes plans for the same;

iii) To administer to SK a low dose of Methotrexate to control his pain and inflammation and, given the mother's belief regarding the effect of this drug on adenosine receptors, promote wound healing;

iv) To manage any pain that SK is suffering by alternative methods such as neuro-modulation in circumstances where painkilling drugs carry with them an unacceptable risk of addiction and the possibility that they will mask other conditions;

v) SK should be investigated for, and if necessary, tested for tuberculosis.

6. It is important to note that this alternative plan is advanced by the mother on the basis that she fervently disputes the diagnosis of late stage recurrent osteosarcoma with metastatic lung disease and persists in her view that SK suffers from myelitis although, more recently, she has contended that he is suffering from leprosy or "bone TB".  Both parents contend that SK has been simply "labelled" from the outset as a "cancer patient", resulting in doctors having little interest in considering alternative diagnoses. 

7. The treatment plan advanced by the parents is also based on the mother's contention that there is no evidence at all that SK is dying and that, accordingly, to treat him by means of palliative care at this point in time is entirely inappropriate and will, in the mother's passionate submission, act to "sign him off from society".  The mother has in the past told Dr A that she feels that palliative care is, effectively, a species of euthanasia.

8. With respect to the specific treatment plan of the Trust, the mother (and to a lesser extent the father) raises multiple objections to that plan in any event.  The mother believes that the palliative chemotherapy proposed will not work and will "switch on" genes that will cause SK's tumour to progress.  In relation to pain management the mother states that she has "serious concerns over the use of controlled, off label drugs in children due to their unreported side effects and negative cumulative effects".  During her cross examination of the doctors in this case, the mother asserted that there is also a risk that SK will become dependent on pain killers and that there is a risk that such painkillers will mask other conditions and prevent the proper identification of his condition. With respect to the principle of palliative care, the mother expressed an almost visceral objection to this.  Her more reasoned arguments in this respect centred on palliative care not being necessary and placing the family at a "legal disadvantage".  More emotionally, she claimed that palliative care, in effect, signed her child's death certificate.  I pause to note that I gained the very clear impression that the unifying characteristic of the mother's fierce objection to the proposed treatment plan, comprising the key elements of psychological input, palliative chemotherapy and provision of painkilling drugs, was its close association with SK's terminal prognosis.

9. Within the context of the parents' firmly held position in respect of the treatment plan advanced by the Trust, in addition to the declaration sought by the Trust, the Trust seeks an order prohibiting the parents from preventing or impeding the effective delivery to SK of psycho-oncology services, symptom management and further treatment, and of palliative intravenous or oral chemotherapy should SK agree to co-operate with the same.

10. In determining this matter I have had the benefit of two witness statements from SK's treating consultant paediatric oncologist, Dr M, and two statements from the consultant paediatric palliative care specialist responsible for SK, Dr A. Exhibited to Dr M's statement is a second opinion of Professor Morland, paediatric oncologist at the Birmingham Children's Hospital and a second opinion obtained by the parents from Dr Radel, a paediatric oncologist at the Mayo Clinic in Minnesota. Each of these second opinions support the diagnosis made by SK's treating clinicians.  I heard oral evidence from both Dr M and Dr A.  I also heard oral evidence from the mother and from the father, the mother having filed a statement and the mother and father having filed a joint statement, to which joint statement is exhibited the extensive documentary evidence on which the parents rely in support of their case.  Finally, I have had the benefit of a report from SK's Children's Guardian, Mr Power.  In circumstances where the mother and father did not seek to dispute the contents of Mr Power's report save, of course, for its conclusion, neither parent wished to ask questions of Mr Power and he did not give oral evidence.

BACKGROUND

11. The background to this matter is extensive.  Much of the background contained in the evidence filed by the Trust is disputed to a greater or lesser extent by the mother.  In her statement, and when asking questions of the witnesses the mother was prone to look back over the history of the matter rather than concentrating on the current issue before the court.   In particular, the mother disputes whether the medical regime applied to SK since his initial diagnosis in 2012 has been appropriate.  Indeed, as I have already alluded to, the mother disputes the diagnosis that SK has received and which has been, on the evidence before the court, confirmed on a number of occasions since 2012. 

12. The mother was able, largely, to articulate her position with respect to these issues in a calm, considered and reasonable manner.  The mother holds a BSc in psychology, an MSc in clinical neuroscience and a PhD in neuroscience.  She used to work in the health care sector.  However, on occasion, and I noted in particular when confronted with the what the doctors say is the inescapable fact of SK's terminal prognosis, the mother tended to seek sanctuary amidst allegations of past medical malpractice, allegations of cover-up by medical professionals fearful of legal liability and allegations of conspiracy between doctors and government bodies.   The mother has also in the past claimed to hear the voices of children who have died from osteosarcoma in the care of the Trust, imploring her to fight their cause.  The mother told me that she had had a vision of SK as an adult and firmly believes he will survive.

13. Whilst the father put his name to a statement filed and served jointly with the mother disputing certain aspects of the background, the father's oral evidence concentrated on his concerns regarding the treatment plan advanced by the Trust moving forward, to which evidence I shall come to.  Further, whilst the father too questions the diagnosis of osteosarcoma given to SK in 2012, I gained the impression that his current doubts in this regard are now driven more by his understandable inability to quiet the flattering voice of hope than by the more systematic and reasoned objections to the diagnosis raised by the mother.  The father's presentation in the witness box was characterised by a quiet and overwhelming sadness for the plight of his beloved son.  I agree with the observation of the Children's Guardian that, by comparison with the mother, the father's position in this case may be more nuanced but that, in the face of an apocalyptic prognosis, the mother and the father speak with one voice.

14. Within this context, and for the purposes of this hearing, I am satisfied that the following matters of background are relevant.  I once again recognise that the mother disputes some of this background but I am satisfied on the evidence before the court that the court can rely on the following matters as being established on the balance of probabilities on the evidence that is before the court.

15. SK was born in 2005 and he lives with his parents and his sister.  Whilst the parents divorced in 2014, they reconciled in 2015.  The mother and the father share parental responsibility for SK.

16. On 17 January 2012, and following a biopsy, SK was diagnosed with a left humerus high grade osteosarcoma following a referral by his General Practitioner.  Following the diagnosis, the mother requested a second opinion in circumstances where she considered that SK had osteomyelitis (an infection of the bone) and not osteosarcoma.  A second opinion provided by a consultant orthopaedic surgeon and a pathologist confirmed the original diagnosis of osteosarcoma.

17. Following his diagnosis SK's treating medical team recommended that SK should undergo treatment in accordance with what Dr M described as the 'gold standard' of treatment for osteosarcoma by reference to both international and domestic standards.  That treatment involved a 10 week course of chemotherapy with three drugs (including Methotrexate), followed by surgery to remove the osteosarcoma and perform a total humeral replacement and finally a further course of adjuvant chemotherapy post operatively.  The mother requested a further second opinion.  This further opinion by another consultant orthopaedic surgeon supported the initial diagnosis of osteosarcoma.

18. At this point a CT scan of SK's chest revealed three nodules in his lung suspicious of pulmonary metastases.  The presentation of these nodules classified SK as having 'possible' metastatic lung diseases by reference to the standard international tumour classification.

19. Whilst SK's initial course of chemotherapy commenced on 31 January 2012, before the parents consented to the second, surgical, stage of the treatment they requested a second biopsy.  That second biopsy again confirmed the original diagnosis of osteosarcoma.  A pre-operative CT scan revealed further lung nodules, one of which was highly suggestive of metastasis, with the others likely to be metastases but less certain.  The surgery to resect SK's left humerus and insert an endoprosthetic replacement was performed on 7 May 2012 at the Royal National Orthopaedic Hospital by Professor Briggs.  The pathology undertaken during surgery confirmed a poor response by SK to the chemotherapy.  Following the period of adjuvant chemotherapy subsequent to the surgery, SK had a further CT scan which revealed that his lung nodules were stable.  However, given the number of nodules surgical resection was not a viable option.

20. Notwithstanding these issues, SK made good progress.  His parents accessed privately funded physiotherapy during which SK made good rehabilitative progress.  He returned to school promptly and displayed no major late side effects in respect of the chemotherapy.

21. In August 2014 concerns were raised over the appearance of the tissue around SK's left humerus prosthesis, which appeared calcified.  A CT scan was ordered to determine whether this represented myositis (which the mother contends is the condition that SK has) or a local recurrence of the osteosarcoma.  The findings were indeterminate and SK continued to be monitored between September 2014 and August 2015.

22. On 24 August 2015, nearly three years after the end of his initial regimen of treatment doctors noted a further change in the appearance of the tissue around SK's left humerus prosthesis and an ultrasound examination revealed a soft tissue mass.  On 2 September 2015 a repeat, CT scan guided, biopsy showed a local recurrent high grade osteosarcoma.  A CT scan of SK's chest revealed additional nodules consistent with the progression of metastatic lung disease.   On 5 October 2015 an attempt was made by Professor Briggs to surgically remove the tumour at the Royal National Orthopaedic Hospital but it was too extensive to resect and the planned procedure was abandoned.  The parents consented to that surgery.  Material from the tumour was sent for pathological analysis and, once again, the diagnosis of osteosarcoma was confirmed.

23. In October 2015 the outcome of a multidisciplinary review of SK's condition and treatment plan concluded that the only option for curing SK's tumour was the amputation of his arm, including all of his shoulder, together with second line chemotherapy.  However, in light of the progression of the likely metastatic disease in SK's lungs his treating clinicians were in any event concerned about the curability of SK's disease.

24. The mother and the father continued to dispute SK's diagnosis.  They requested an opinion from the Mayo Clinic in the United States of America in October 2015 and travelled with SK to the Mayo Clinic.  The court has before it a report from Dr Radel, the oncologist at the Mayo Clinic.  That report makes clear that the initial impression formed by Dr Radel was that SK likely had recurrent metastatic osteosarcoma and recommended complete removal of his arm and shoulder, as had the clinicians in England.  The reports of the exams undertaken by the Mayo Clinic were said to be "consistent with the patient's known biopsy-proven recurrent osteosarcoma".

25. Between the family's return to England at the end of October 2015 and August 2016 discussions continued regarding the option of amputation of SK's arm, including all of his shoulder coupled with second line chemotherapy.  However, the mother continued to express the view that the diagnosis of osteosarcoma was wrong.  In December 2015 the mother (and, the mother contends, SK) refused to consent to this treatment plan.  The mother concedes in her statements that she refused to consent to the surgery and to the second line chemotherapy, the latter refusal being based on her contention that the Trust was unable to provide evidence of the efficacy of that treatment.  Professor Briggs felt that the surgical team could not force the family to accept such a radical surgical procedure. 

26. In March 2016 the Trust attempted medical mediation with a view to achieving consensus.  This attempt was not successful.  At this time, Dr M considered making an application to the court.  This course of action was not however pursued in circumstances where Dr M considered she could not argue before the court that the treatment proposed would cure SK given the absence of data concerning long-term survival rates following such a radical resection and the unpredictable behaviour of the metastatic lung disease.  At this time SK had the benefit of symptom control from an expert palliative care team and he was pain free and attending school.

27. Whilst in April and May 2016 it became apparent that SK's tumour mass was growing larger and extending outside the confines of the upper left limb towards the coracoid process, and whilst concern was expressed by Professor Briggs that pain was a feature of SK's presentation, the parents declined an oncology opinion.   Professor Briggs expressed concern that the tumour was becoming potentially inoperable.  In August 2016 a further MRI scan of the tumour resulted in a conclusion being reached by the multi-disciplinary team that it would no longer possible to perform a complete surgical resection of the tumour leaving no residual tumour at the margins.  A nuclear PET scan also demonstrated active lesions in SK's chest.  The mother continued not to accept SK's diagnosis.  That this is the case is clear from the part of her statement of 21 October 2016 that deals with this period.  More recently, the mother has contended that SK is suffering from leprosy or "bone TB".

THE CURRENT POSITION

28. The statement of Dr M describes the current presentation of SK's illness, the details of which are very distressing indeed, as follows:

"4. SK's tumour is situated in his left arm.  After several years of remission, it has grown and spread upwards from the primary site in his arm to his shoulder and anterior and posterior chest wall.  It looks like a bulky mass, larger than the size of a rugby ball with discolouration of the overlying skin.  There is tissue fluid from the left arm seeping through an open wound surrounding the tumour (a process referred to as fungating).  The associated blood vessel and nerve compromise has caused paralysis of his left arm.  The disease has spread to his lungs as well.

5. SK is currently in pain although he denies it.  This is evidenced by his hunched over posture and extreme distress when anyone comes within the vicinity of his arm and shoulder for examination.  This is compounded by the fact that SK is distressed and embarrassed by the immense size of the tumour.  It is so large it cannot be hidden by his clothing.

6. SK's pain will worsen as the tumour continues to grow pressing on his muscles and nerves in his arm and shoulder.  The likelihood is that he will experience unbearable and unremitting pain as a result of the tumour invading the nerve bundle (brachial plexus) in his left armpit or obstructing the blood flow into his arm causing muscle damage (claudation).
…/

51. SK appears to be in pain.  Without active management of the tumour he is likely to experience unremitting, excruciating pain as it grows and invades his brachial plexus and extends further across the front of his chest.  The tumour will continue to fungate out of his wound posteriorly and this could cause significant blood loss.  This will increase the likelihood of the wound becoming infected which will also significantly reduce his life expectancy.  Over time, he will gradually become more debilitated and weak as the tumour absorbs more of his metabolic activity."

29. As to SK's prognosis, although not immediately fatal, Dr M confirms that SK's condition is terminal and states that, based on the current evidence, he will survive for between three and six months.  Dr A says in her statement that, based on her clinical experience and SK's current presentation he will survive for a period of three months.

30. With respect to the treatment plan advanced by the Trust, Dr M states that given SK's end of life prognosis, the most important goal now is to ensure that SK's pain and other symptoms are adequately managed for the remainder of his life and that, during that period, he is assisted to maintain the best quality of life possible given his condition.  Dr M's primary concern is the potential for SK to suffer very severe and very painful symptoms from the progressive recurrence of cancer involving his left arm, shoulder and chest wall.  She considers that SK's symptoms of pain, his open wound, breathlessness and the bulk of his tumour will dramatically worsen within the next one to two months. 

31. Within this context, Dr M and Dr A advance the treatment plan proposed by the Trust as the best means of achieving this goal for SK and as being plainly in SK's best interests.  Specifically: 

i) With regard to psycho-oncology, this service would assist SK in coming to terms with his terminal prognosis, the difficulties presented by his symptoms and would allow him to talk about the option of further palliative chemotherapy.

ii) With respect to palliative chemotherapy, whilst recognising the disbenefits of intravenous palliative chemotherapy as causing side effects including hair loss, nausea, potential gut toxicity, mouth ulceration, taste disturbance and bone marrow suppression with the concomitant potential for infection, Dr M states that these symptoms can be managed and that the benefit of such treatment is the chance of stabilising the tumour of causing it to regress in a manner that would reduce the pain consequent upon the tumour as it invades structures surrounding SK's arm. Dr M also contemplates the possibility of further surgery to increase SK's survival by several months were the tumour to regress sufficiently.  Finally, Dr M states that this form of treatment may, additionally, slow the progression of the metastatic disease in SK's lungs, further extending and improving the quality of his life.  I note that Dr M was very careful however to make clear that this benefits are by no means certain to pertain and that there is a chance that the anticipated benefits will not materialise.

iii) With respect to the alternative of oral chemotherapy, Dr M again outlined the disbenefits of side effects including hair loss, nausea and bone marrow suppression but again states that these symptoms can be managed and posits that the benefit of such treatment is the chance of stabilising the tumour of causing it to regress in a manner that would reduce the pain consequent upon the tumour.  Dr M acknowledges however, that oral chemotherapy may not be greatly effective.

iv) With respect to the ongoing management of SK's symptoms, including pain, Dr A considers it to be axiomatically in SK's best interests for his pain to be properly managed and by that management to ease his distress as his pain worsens.   Dr A advances not only the use of painkillers but also a holistic approach which includes the use of a pain and symptom diary, physiotherapy support and guided imagery (a psychological technique in managing pain).   Whilst the mother contended that providing opiate based pain-killers to her and the father to administer to SK at home was irresponsible and dangerous, Dr M is clear that the safety and legality of opiate based pain killers in a home setting is not contraindicated.

v) With respect to other treatments, Dr A is clear that the dressing of SK's open wound will soon need to be undertaken whilst he is awake (it having been, to date, largely undertaken under a general anaesthetic) as SK will not long tolerate it being done under general anaesthetic.

32. In addition to improving his quality of life, Dr M is clear that, with active treatment in the manner described in the treatment plan, it may be possible to extend SK's survival by a number of months.  In her oral evidence, Dr A was clear that the provision of effective palliative care can, in addition to improving a patient's quality of life, extend their survival by means of proper management of symptoms.

33. As to the alternative treatment plan proposed by the mother, Dr M and Dr A stated during their oral evidence that the mother's wish that SK's treatment be managed by the Royal National Orthopaedic Hospital fails to recognise that that unit is not the one best equipped to manage SK's condition given the stage that it has now reached.  In particular, it is not possible for RNOH to provide appropriate supervision of SK's pain and palliative care needs.  For example, given its location, for SK to attend the RNOH for pain management would require up to a four hour round trip.  By contrast, Dr A's symptom management and palliative care team can provide more flexible care, including care at home.  With respect to the alternative pain management techniques advanced by the mother in terms of neuro-modulation, Dr A expressed reservations about this technique, as she did when the mother raised the possibility of using cannabis to manage SK's symptoms.

34. With respect to the medical aspects of the alternative plan advanced by the mother, whilst acknowledging that the benefit of not pursuing the treatment plan advanced by the Trust would be that SK would not have risk suffering the side effects of chemotherapy, in respect of the disbenefits of not following the plan advanced by the Trust, Dr M states as follows:

"SK's tumour will continue to grow and this will increase his pain.  It is expected to be unremitting and excruciating.  He will be at risk of severe nerve pain (which is a unique type of pain) that may require nerve block procedures and/or urgent amputation. In addition, his life expectancy will remain short and he will not have the benefit of potential slowing of the general progression of his disease which will continue to spread throughout his body and will give rise to further painful and distressing symptoms."

35. With respect to SK's views concerning his treatment, as I have already alluded to, a complication in this case arises from clear evidence that SK's world views in this regard have become inexorably tied to his mother's world view concerning the nature of his condition and the manner in which that condition should be treated. 

36. It is plain on the evidence before the court (which evidence the mother did not seek to dispute) that the mother has spoken of alternative diagnoses, including leprosy, in front of SK.  Dr M is clear that the mother has said in front of SK that she believes that opiate painkillers and chemotherapy will kill him. Again, the mother did not seek to dispute that evidence.  Within this context, there are a number of clear, and undisputed examples in the evidence before the court of SK now repeating his mother's agenda word for word.  At a consultation on 17 October 2016 Dr M relates that SK angrily accused his father of sabotaging his health by giving him painkillers that caused him to sleep deeply.  Dr M considered that these were interpretations that were quoted directly from his mother.  SK has made clear that he does not want to be treated with chemotherapy because he has been told by his mother that this is what caused his condition in the first place. 

37. Dr A is likewise clear that SK is now convinced that pain medication will kill him.   She reports that when she first saw SK on 23 September 2016 he asked for pain relief but then refused it when it was brought to him when his mother was present.  He clearly stated to Dr A that oxycodone would kill him and that his mother had told him that oxycodone kills people.  The mother did not dispute this evidence.  Dr A was able provide SK with a balanced explanation of the benefits and risks of oxycodone, after which SK expressed a willingness to use that medication as needed.  However, three days later he again refused on occasion to accept medication for his pain.  When Dr A asked SK his reasons for refusing, the mother answered in SK's place by repeating a key objection oft voiced by her, namely that pain relief may mask the disease process and would not assist when trying to "work out what is really going on".  On 11 October 2016 SK again spoke to Dr A about the pain medication being bad for him and that it would hurt him.

38. It is clear to me that SK's denial that he is in pain at times when his physical presentation as hunched over directly contradict these denials is a further manifestation of his adoption of his mother's position regarding the use of opiate painkillers.  I am satisfied on the evidence available to the court that SK's position in respect of his treatment has been heavily influenced by, and indeed is likely to have become subsumed within, the stark and immovable position adopted by his mother.   The position is best articulated by Dr A in her statement:

"SK is the centre and heart of a loving family who developed a devastating cancer with a poor prognosis from presentation.  The long reaching and devastating effects of this diagnosis are palpable.  But the complicating factor in this situation is that SK lives within a unique family dynamic.  His mother has a persistent fixed false belief around his condition and aspects of his supportive care.  She is a highly educated woman who works within the health sector and she presents her concerns about SK's health in a plausible and well-articulated manner.  SK has been exposed to her opinions and beliefs for many years and has conceded to them, except when he is in extreme pain…SK has demonstrated distress when exposed to even mild conversation conflict between his parents and professionals with SK always siding with his mother. [His mother's] opinions regarding his underlying condition and her assessment and management of pain are shared frequently with SK.  The alternative diagnosis of leprosy and bone cysts, amongst other diagnoses, have been mentioned since I have been involved in SK's care.  They are mentioned in front of SK.  [His mother] has said several times that SK cannot have osteosarcoma because she says that he does not have pain and everyone knows children with osteosarcoma have pain.  As a result of her strong beliefs on his condition, pain perceptions and medication, it is difficult to discern SK's fully informed and uninfluenced perspective on any of these issues.  He is heavily influenced by his mother."

39. Within this context, SK is currently refusing to contemplate further chemotherapy.  His compliance with pain killing medication is sporadic and it is apparent that he is attempting to tolerate increasing levels of pain over conceding a need for painkillers.

40. I turn finally by way of the background and evidence to the report of the Children's Guardian.  Mr Power has considered the question of whether SK is 'Gillick' competent in respect of his treatment.  Mr Power is clear that SK is not 'Gillick' competent in respect of his treatment given the manifest impact of his mother's views on his own thinking in relation to his treatment.  Whilst SK told Mr Power that he disagrees with the proposal for further chemotherapy, insisting that this was his own view and not that of his mother, Mr Power concludes:

"SK, in my opinion, finds himself in an echo chamber of his mother's making and although he insists that he has capacity ("they want to give me chemo.  I disagree myself.  Dr M says my mum tells me to refuse but actually I'm refusing") I don't think he can make an informed decision because his cognitive processing is overwhelmed and templated by his mother's idée fixe, which are in my view, more extreme examples of denial than they are delusional."

41. The exchanges that Mr Power had with SK, and which are recorded in his report, reinforce my conclusion that SK's views and wishes in respect of his treatment are heavily influenced by the views of his mother. I am satisfied that Mr Power's assessment in respect of SK's lack of 'Gillick' competence is correct in that, whilst SK is plainly a very bright child, it cannot be said in the circumstances that I have set out, that SK has achieved a sufficient level of understanding and intelligence to be capable of making up his own mind on the matter requiring decision.

42. Mr Power concludes that it is in SK's best interests to be treated in accordance with the palliative treatment plan proposed by the Trust.  Mr Power is however clear that it would not be in SK's best interests to compel him to undertake further chemotherapy at this stage.  As I have already recorded, this is not to suggest that SK is 'Gillick' competent in relation to his treatment.  Rather to recognise the fact that SK has become heavily drawn into his mother's views on treatment and, within this context, that seeking to force SK to accept treatment during the final weeks of his life in a manner that will place him in opposition to his mother, from whom he will draw valuable emotional support during that period, cannot be said to be in his best interests.

THE ISSUES

43. Within the foregoing context, having regard to the areas of dispute between the parties to these proceedings, the issues that the court must decide today are as follows:

i) Whether the diagnosis of high grade recurrent osteosarcoma with associated metastatic lung disease is the correct diagnosis in respect of SK;

ii) Whether the terminal prognosis in respect of SK with a survival period of between three and six months is the correct prognosis;

iii) Whether, having regard to the position in respect of diagnosis and prognosis, the palliative treatment plan now proposed by Trust for SK, and opposed by the parents can be said to be SK's best interests.

THE LAW
44. The legal framework that the court must apply in cases concerning the provision of medical treatment to children who are not 'Gillick' competent is well settled.  The following key principles can be drawn from the authorities, in particular In Re J (A Minor)(Wardship: Medical Treatment) [1991] Fam 33, An NHS Trust v MB [2006] EWHC 507 (Fam), Wyatt v Portsmouth NHS Trust [2006] 1 FLR 554 and Kirklees Council v RE and others [2015] 1 FLR 1316:

i) The paramount consideration is the best interests of the child.  The role of the court when exercising its jurisdiction is to take over the parents' duty to give or withhold consent in the best interests of the child.  It is the role and duty of the court to do so and to exercise its own independent and objective judgment;

ii) The starting point is to consider the matter from the assumed point of view of the patient.  The court must ask itself what the patients attitude to treatment is or would be likely to be;

iii) The question for the court is whether, in the best interests of the child patient, a particular decision as to medical treatment should be taken.  The term 'best interests' is used in its widest sense, to include every kind of consideration capable of bearing on the decision, this will include, but is not limited to, medical, emotional, sensory and instinctive considerations.  The test is not a mathematical one, the court must do the best it can to balance all of the conflicting considerations in a particular case with a view to determining where the final balance lies.  In reaching its decision the court is not bound to follow the clinical assessment of the doctors but must form its own view as to the child's best interests;

iv) There is a strong presumption in favour of taking all steps to preserve life because the individual human instinct to survive is strong and must be presumed to be strong in the patient.  The presumption however is not irrebutable.  It may be outweighed if the pleasures and the quality of life are sufficiently small and the pain and suffering and other burdens are sufficiently great;

v) Within this context, the court must consider the nature of the medical treatment in question, what it involves and its prospects of success, including the likely outcome for the patient of that treatment;

vi) There will be cases where it is not in the best interests of the child to subject him or her to treatment that will cause increased suffering and produce no commensurate benefit, giving the fullest possible weight to the child's and mankind's desire to survive;

vii) Each case is fact specific and will turn entirely on the facts of the particular case;

viii) The views and opinions of both the doctors and the parents must be considered.  The views of the parents may have particular value in circumstances where they know well their own child.  However, the court must also be mindful that the views of the parents may, understandably, be coloured by their own emotion or sentiment;

ix) The views of the child must be considered and be given appropriate weight in light of the child's age and understanding.

45. The mother's closing submissions concentrated heavily on SK's right to life under Art 2 of the ECHR.  Whilst the right to life under Art 2 of the ECHR imposes a positive obligation to provide life sustaining treatment that obligation does not extend to providing such treatment if that treatment would be futile in nature and where responsible medical opinion is of the view that the treatment would not be in the best interests of the patient concerned (see R (Burke) v The General Medical Council [2005] EWCA 1003).

46. Within the foregoing legal context, in Re A (A Child) [2016] EWCA 759 the Court of Appeal confirmed once again that, whilst requiring great sensitivity and care of the highest order, the task of the court in cases concerning disputes in respect of the medical treatment of children can be summed up by reference to two paragraphs from the speech of Baroness Hale in Aintree University Hospital NHS Trust v James [2013] UKSC 67, namely:

"[22] Hence the focus is on whether it is in the patient's best interests to give the treatment rather than whether it is in his best interests to withhold or withdraw it.  If the treatment is not in his best interests, the court will not be able to give its consent on his behalf and it will follow that it will be lawful to withhold or withdraw it.  Indeed, it will follow that it will not be lawful to give it.  It also follows that (provided of course they have acted reasonably and without negligence) the clinical team will not be in breach of any duty toward the patient if they withhold or withdraw it."

and

"[39] The most that can be said, therefore, is that in considering the best interests of this particular patient at this particular time, decision-makers must look at his welfare in the widest sense, not just medical but social and psychological; they must consider the nature of the medical treatment in question, what it involves and its prospects of success; they must consider what the outcome of that treatment for the patient is likely to be; they must try and put themselves in the place of the individual patient and ask what his attitude towards the treatment is or would be likely to be; and they must consult others who are looking after him or are interested in his welfare, in particular for their view of what his attitude would be."

DISCUSSION
47. After careful and anxious deliberation, I am satisfied that there is no proper basis for doubting SK's diagnosis of high grade recurrent osteosarcoma with associated metastatic lung disease, and no proper basis for doubting the prognosis arrived at by his treating clinicians.  Within this context, I am further satisfied that treatment plan advanced by the Trust is a plan that is in SK's best interests and that the court should so declare.  My reasons for coming to these conclusions are as follows.

Diagnosis
48. I have listened carefully to the mother's submissions concerning SK's diagnosis and have read the extensive information she has exhibited to her statements; which information forms the basis for her contentions that SK has been misdiagnosed.  I am however, on the evidence before the court, entirely satisfied that there is no proper evidential basis for doubting SK's diagnosis of high grade recurrent osteosarcoma with associated metastatic lung disease.

49. The history of this matter demonstrates that SK's diagnosis has been confirmed by at least five biopsies, with two of those biopsies taken during surgery on his tumour, during which surgeries Professor Bishop was able to examine the tumour.  Those biopsies have repeatedly indicated that SK has a high grade osteosarcoma.  Within this context, repeated second opinions have also reached this conclusion.  Finally, even the second opinion the mother sought from a highly respected medical institution in another jurisdiction concurred with SK's diagnosis of high grade osteosarcoma.  In my judgment the evidence available to the court is absolutely clear in demonstrating that SK has cancer and that his cancer is an osteosarcoma.   I am further satisfied that the multiple scans that SK has undergone reveal that, in addition, he is suffering from progressive metastatic lung disease consequent upon his primary diagnosis.

50. I am of course conscious that the court has before it no jointly instructed expert evidence on the question of SK's diagnosis.  However, I am entirely satisfied that, in light of the wealth of evidence before the court on this issue (which evidence includes the evidence of SK's treating oncologist confirming the results of the repeated biopsies of SK's tumour and exhibiting the further opinions of Professor Morland, paediatric oncologist at the Birmingham Children's Hospital, and Dr Radel, paediatric oncologist at the Mayo Clinic that support the diagnosis made by SK's treating clinicians), it has been appropriate to determine this matter on the evidence currently available to the court.  Indeed, whilst the initial directions given in this matter included a direction permitting the Children's Guardian to secure expert evidence, no party in the end sought to adduce expert evidence for this hearing on this question as being necessary for the court to determine the application.

Prognosis

51. Whilst I have every sympathy with the mother's insistence that her son is not dying, and with great sadness, I am likewise entirely satisfied that the evidence before the court demonstrates that SK's prognosis is a terminal one.  Further, I am also satisfied that the prognosis for SK's pain is as it has been described by Dr M and Dr A.  I am satisfied on the evidence before the court that not only is SK's pain now increasing but that, if not treated appropriately, his pain will reach a point where it becomes unbearable for him.

Treatment

52. As I have already stated, and having as I must SK's best interests as my paramount consideration, in circumstances where I am satisfied that SK has high grade osteosarcoma with metastatic lung disease and where I am satisfied that the prognosis for SK is as stated by his treating team, I am entirely satisfied that the palliative treatment plan proposed by the Trust is in SK's best interests.

53. SK's condition is now described as being "end stage" osteosarcoma.  That description of his situation belies, in the functional and dispassionate manner characteristic of medical language, what will now be the inescapable reality for SK as he approaches the end of his life based on the medical evidence before the court.  Absent appropriate treatment, I accept the evidence that SK's pain will increase to an unremitting, and excruciating level as the tumour grows and invades his brachial plexus and extends further across the front of his chest.  I further accept the evidence that SK's tumour will continue to fungate out of his wound posteriorly and this could cause significant blood loss.  This will increase the likelihood of the wound becoming infected, which would also significantly reduce his life expectancy.  The tumour will continue to advance and, over time, he will gradually become more debilitated and weak as the tumour absorbs more of his metabolic activity.  SK has already stated to Mr Power that he is "very, very frightened" and, as his condition progresses, the emotional demands placed on his young mind by his illness and by his terminal prognosis will only increase. 

54. With respect to the best interest decision, the starting point for the court is to consider the matter from the assumed point of view of SK.  Whilst accepting that the point of view of the patient will, in the ordinary course of events, be influenced by multiple factors, including the views of others, I am satisfied that in seeking to examine the position from SK's point of view, I must do so in a manner that disregards the impact on SK of the overt and negative influence that I am satisfied the entrenched views of his mother have had on him with regard to his treatment.   That influence goes well beyond the benevolent guiding hand of a parent in respect of a child facing difficult choices and constitutes a damaging influence on SK.  In the circumstances, in my judgment it is right that I disregard its impact on SK's thinking when seeking to look at the position from SK's point of view. 

55. Whilst I have borne carefully in mind SK's statements concerning chemotherapy and the use of opiate painkillers, I am satisfied that those statements are heavily driven by his mother's views.  Further, it is important to bear in mind that SK has been willing to accept the administration of opiate based pain-killers on occasion when the rationale for the same has been explained calmly to him and has indicated to the Children's Guardian that "people don't know how painful it is".  His presentation demonstrates that he is in pain.  Within this context, if able to articulate a point of view independent of the influence exerted by his mother I am satisfied that that point of view would be that he wished to be as pain-free and comfortable as possible over the time now available to him.  Within this context, I am satisfied that his point of view would be that treatment that achieved that end would be acceptable to him.

56. Within this context, and examining SK's best interests from a broad perspective, encompassing medical, emotional, sensory and instinctive considerations, I am satisfied that it can only be in his best interests for his pain to be properly managed as it gets worse.  Indeed, it would be inconceivable, in circumstances where I accept SK's diagnosis and the prognosis in respect of the progression of his terminal illness, for the court to reach any other conclusion that the proper management of his pain, as defined by Dr A, is in his best interests.  Whilst I have born in mind SK's statements regarding the use of painkillers, once again I am satisfied that those statements derive from his mother's influence and are not a reason to reach a different conclusion in respect of his symptom and pain management.

57. In this case, the palliative chemotherapy proposed in the treatment plan has, in addition to the possibility of extending SK's survival, the aim of managing his pain.  Within these contexts I am satisfied that such intervention is, prima facie, in SK's best interests.  However, in respect of the proposal for palliative chemotherapy I also recognise that there are significant complications in this case. 

58. First, whilst SK has shown recently that he is at times amenable to the administration of appropriate pain medication, he maintains a firm opposition to palliative chemotherapy.  Whilst that opposition, I am satisfied, is driven by his mother, I must nonetheless bear in mind that SK's best interests include family and social factors.  In the last months of his life SK is going to need, more than he has ever done, the love and society of his parents.  In circumstances where SK's opposition to chemotherapy is of a different order of magnitude to his position in respect of painkillers, the court must be very careful to avoid a situation that places SK in opposition to his mother from whom he will, for all the concerns I have expressed above her, draw valuable emotional support.  Further, whilst in some cases an order compelling treatment may assist a child who finds him or herself in SK's situation by providing an external 'excuse' for taking a stand against a parent's mistaken view, the reality in this case is that there is now too little time left to achieve such an outcome. 

59. Second, I must bear in mind Dr M's realistic concession that palliative chemotherapy may not have the desired effect.  The court must consider the nature of the medical treatment in question, what it involves and its prospects of success, including the likely outcome for the patient of that treatment.  Dr M is candid in her assessment of the chances of palliative chemotherapy working.  Further, I must also bear in mind that even if it does bring some relief from pain, whether by simply shrinking the tumour or shrinking it to the extent that surgery to relieve pain may be performed, SK is likely to experience some unpleasant side effects from the treatment.  Within this context, I also must recognise that, irrespective of his mother's influence, SK's position may be that he does not want to receive unpleasant treatment. 

60. Overall, whilst I am satisfied that palliative chemotherapy should be declared to be in SK's best interests such that he can be administered the same notwithstanding his parent's lack of consent if he agrees to this, I am further satisfied that the Children's Guardian is entirely correct when he advises the court that seeking to compel SK to accept treatment during the final weeks of his life in a manner that will place him in opposition to his mother, from whom he will draw valuable emotional support during that period, and in circumstances where the prospect of success of such treatment are by no means certain, cannot be said to be in his best interests.

61. Finally, SK's best interests also include the psychological aspects of his welfare. As I have already noted, as his condition progresses I am satisfied that the emotional demands placed on his young mind by his illness and by his terminal prognosis will only increase.  Within this context, I am satisfied that it is plainly in SK's best interests for him to continue to receive psycho-oncology input to assist him to deal with the psychological impact of his situation.  If this input results in him becoming more amenable to the administration of palliative chemotherapy, then that is all to the good.  However, in any event I am satisfied that it is in SK's best interests for him to be provided with this service notwithstanding the mother's emphatic statement in the witness box that she would not attend the same.

62. In reaching my conclusion that the treatment plan is in SK's best interests I have also paid careful regard to the fact that there is strong presumption in favour of taking all steps to preserve life because the individual human instinct to survive is strong and must be presumed to be strong in the patient.  

63. Within this context, in reaching the conclusion that the palliative treatment plan is in SK's best interests I have born very much in mind the evidence of Dr M that, with active treatment in the manner described in the treatment plan, it may be possible to extend SK's survival by a number of months and the evidence of Dr A that the provision of effective palliative care can, in addition to improving a patient's quality of life, extend their survival by means of proper management of symptoms.  Whilst I accept that the strong presumption in favour of taking all steps to preserve life is not irrebutable, and that the steps proposed by the Trust will, in relation to palliative chemotherapy result in side effects and, in relation to the administration of opiate painkillers carry a small risk, within the context of the strong presumption in favour of taking all steps to preserve life I am again satisfied that the steps proposed by the Trust are in SK's best interests.

64. I have listened very carefully to the views of the parents in this case and I have accorded them weight.  I have borne carefully in mind that they know SK better than any other adult in the courtroom.  However, for the reasons I have set out in this judgment, I am not satisfied that their views should prevail in this case.  Whilst the mother in particular advances a carefully constructed alternative treatment plan, I regret that I cannot be satisfied that that plan can be said to be in SK's best interests at this time.  The primary reason driving this conclusion is that the mother's plan is based on her mistaken belief that SK's diagnosis is incorrect and her view that he is not dying.  In circumstances where I have, regrettably, had to find the opposite, I cannot reach the conclusion that the plan carefully constructed and advanced by the mother and the father is one that could be said to be in SK's best interests.   Further, I bear in mind that fact that, in circumstances where SK's treating team take the view that the plan advanced by the mother is not in SK's best interests, the court has no power to require doctors to carry out medical treatment against their own professional judgment.

65. Finally, I am satisfied in this case, given the very strong views that have been expressed, in particular by the mother, regarding the treatment plan proposed by the Trust, that without an order in place there is every chance that the treating clinicians in this case will be faced by refusal or withdrawal of consent by the parents in respect to the palliative treatment regime I am satisfied is SK's best interests.   As SK enters his last months, it will be entirely antithetic to his best interests for treatments put in place to ease his suffering to be interrupted or disrupted.  Such a situation could only add to his discomfort and distress.  In the circumstances, I am satisfied that this is a further reason to make an order in the terms sought by the Trust is in SK's best interests.  Further, in light of the mother's somewhat equivocal position in the witness box when asked whether she would obey an order made by the court, and the father's tendency on occasion to follow the mother's lead that it is necessary to include a provision in the order prohibiting the mother and the father from preventing or impeding the treatment that this court has determined to declare is in SK's best interests on all of the evidence available to it.

CONCLUSION

66. In Re A (A Child) Lady Justice King made clear that the test to be applied in cases of this nature is simply what is in the best interests of the child at the particular time in question, having regard to his welfare in the widest sense, not just medical but social and psychological.  In this almost unbearably sad case I am wholly satisfied that the palliative treatment plan advanced by the Trust is manifestly in SK's best interests as the proper means of ensuring that that SK's pain and other symptoms are adequately managed for the remainder of his life and that, during that period, he is assisted to maintain the best quality of life possible given the stage his condition has now reached and his prognosis.

67. In the circumstances, I make the order in the terms proposed by the Trust and supported by the Children's Guardian as being in SK's best interests.

68. Finally, it will be easy for those who are not enduring the unimaginable agony that this family is going through to ask why parents might question doctors who seek to control their child's increasing pain and to manage worsening symptoms that are both distressing and life limiting.   The ease with which such a question can be asked belies the brutal complexity of the tragic circumstances that give rise to it. 

69. The stark reality is that parents faced with a terminal illness befalling their child have to deal with that horror in the best way they can.  That will take many forms.  As I have already observed, in this case the father relies on hope and takes refuge in the possibility that there may yet be a miracle.   Whilst the mother objects fiercely to psychological input designed to assist SK to come to terms with his situation, to palliative chemotherapy and to drugs to ameliorate SK's increasing pain, the unifying characteristic of each of these objections is their very close association with SK's terminal prognosis.  Within this context, the mother's objections are, I am satisfied, manifestations of her pain and inability to come to terms with SK's diagnosis.  Neither the mother nor the father in this case are anything other than loving parents who are simply battling to stay upright in the darkening storm that has overwhelmed their family.  They should be accorded understanding and sympathy, as they have been and continue to be by the caring and conscientious medical team responsible for SK's care.

70. That is my judgment.

POSTSCRIPT
71. SK passed away in January 2017.  Whilst there was some press reporting of this case at the time I gave judgment, I have delayed in publishing the judgment to avoid having to trouble the parents with the question of whether the judgment should be published and, if so, with the related question of anonymisation during what, I am certain, has been a very difficult time for the family.