When doctors are not willing to offer treatments

By Celia Kitzinger, 13th March 2022

This was an unusual hearing because of its focus on a treatment (clinically assisted nutrition)  that doctors were not willing to offer.  

By the day of the hearing, the person at the centre of this case (P) had not received nutrition for 10 days, ever since his nasogastric (NG) tube had been withdrawn following problems with NG feeding.

The doctors were clear that this was not now a treatment they were willing to offer – even on an interim basis, and even though there was a risk that P might die by the time of the next hearing.

Clinically assisted nutrition was not, in fact, a treatment about which the court was being asked to make a decision, but it loomed large in the course of the hearing. 

Overwhelmingly, the treatments discussed when serious medical treatment cases come to court are treatments that Trusts are willing to offer, but the patient is refusing them.  Or they are treatments that the Trust is willing to offer, but which either they or the family, do not consider to be in the patient’s best interests.

For example, in the recent case before the court concerning William Verden (“Best interests and kidney transplantation”), the Trust made clear its position that it did not consider a kidney transplant to be in William’s best interests, but that they would carry out the surgery and the post-transplantation treatment if the court decided that it was in William’s best interests (which it did).  

By contrast, in the case discussed here,  the Trust would not provide clinically assisted nutrition and was not giving the court the opportunity to make a best interests decision about it. 

The case (COP 13892144) before Mr Justice Moor on 25th February 2022 concerned a man in his early 20s (P) who’d suffered a cardiac arrest about four months previously. 

Following cardio-pulmonary resuscitation, it became evident that P had suffered a severe hypoxic brain injury. He also has irreversible lung damage, pre-dating his cardiac arrest, caused by untreated Type 1 diabetes.

He’s now in a prolonged disorder of consciousness “on the borderline of the vegetative state and the minimally conscious state” and doctors say that “there is no real prospect of recovering consciousness”.   

There was no dispute that P lacks capacity to make his own decisions about medical treatments.

The Trust’s position

The Trust (represented by Jack Anderson) had made an application to withdraw clinically-assisted hydration and to provide palliative care in the form of intravenous (IV) administration of morphine and midazolam, to reduce symptoms of pain or distress.  

The application before the court was limited to these three treatments only (withdrawing hydration; administering morphine and midazolam).  

The treating doctors have already made clinical decisions not to provide other treatments they see as counter-indicated or futile. These include:

  • clinically assisted nutrition 
  • cardio-pulmonary resuscitation (CPR) in the event of cardiac arrest
  • treatment escalation to the Intensive Care Unit, High Dependency Unit, or Medical Emergency Team
  • surgical interventions
  • antibiotics in the event of infection. 

They have accessed second opinions supporting this course of action.

The doctors’ decisions not to provide these treatments are purely ‘clinical’ and do not involve consideration of P’s best interests.  

The underlying principle is that the court must make a decision about which treatments are in P’s best interests by reference to the ‘available options’.

The doctors are willing to offer hydration (which they are currently providing, although they do not consider it to be in P’s best interests) and morphine and midazolam (which they are not currently providing, although they do consider it to be in P’s best interests). These treatments are ‘available options’. 

The doctors are not willing to provide clinically assisted nutrition, CPR, treatment escalation, surgical intervention or antibiotics –  so these treatments are not  ‘available options’ before the court, and are therefore not a matter for best interests decision-making.  

The family position

In their position statement, P’s parents (represented by Sophy Miles) oppose withdrawal of hydration and want an independent expert to advise on P’s condition and whether nutrition can be provided via Total Parenteral Nutrition (TPN). (P’s partner was also in court, and shared the parents position but was unrepresented.)

The parents don’t believe that their son is at the “lower end” of the spectrum of consciousness. They believe they have evidence from their own observations and videos they’ve recorded that P is responsive. 

And although family members clearly don’t want their son/partner to suffer pain, they are concerned that the palliative care regime will hasten his death.  

The parents also take the position that the Trust should have made an application to court much earlier – as soon as it became clear that there were fundamental disagreements between treating clinicians and the family about the way forward.  

Those disagreements became obvious back in November 2021 when the first Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) notice was signed and the parents registered their objection to this.  They also registered an objection in early February 2022, when – shortly after P was moved to a rehabilitation unit – a second DNACPR notice was signed. (This is, however, a purely ‘clinical’ decision and I don’t really see how a court application could have been appropriate at this point.)

At a meeting between clinicians and family on 15th February 2022, the day feeding was stopped, the parents expressed their disagreement both about the withdrawing of nutrition (a clinical decision) and about the proposal for palliative care, which they believe will actively hasten P’s death. P’s mother said at that meeting:  “Anyway, I don’t agree with the referral to palliative care and I want that to be recorded”.

The parents are concerned that a delay in making the application “has effectively pre-empted the decision of the court.  P’s condition is now perilous given that he has not received nutrition since 15 February 2022”. 

They asked for the hearing to be adjourned to enable appointment of an independent external expert chosen by the family to explore all of the treatment options, including other methods of providing P with nutrition (specifically Total Parenteral Nutrition (TPN))

The Official Solicitor’s position

The Official Solicitor (represented by Katie Gollop QC) supported the family’s view that the hearing should be adjourned to permit an independent expert appointed by the family to provide the court with a second opinion.  

She also “grasped the nettle” – her phrase – and made an argument for the provision of nutrition to P until the second opinion was provided.

Why clinically assisted nutrition isn’t an ‘available option’: Medical and legal background

At the time of the hearing,  P had been without nutrition for 10 days. 

Doctors had withdrawn clinically assisted nutrition from P on the grounds that it is clinically inappropriate. 

On 15th February 2022 (10 days before the hearing), nasogastric feed was observed coming out of P’s nose. The hospital say that “as a result of P’s brain damage, normal gut movement is disordered such that food may flow forwards or backwards, or remain in place, giving rise to risks of aspiration into the lungs, or food and air becoming trapped in the gut….. Significant quantities of small bowel contents continue to be aspirated from the stomach”.  Feeding was stopped because of the risk of aspiration (although he continues to receive intravenous fluids).

An alternative method of providing nutrition is Total Parenteral Nutrition (TPN).  The Trust says that this is “technically possible but in the context of catastrophic brain injury and chronic aspiration, would be clinically futile and may cause serious complications such as infection and thrombosis”.  They are not willing to provide it.

The key principle here is that if a patient requests a medical treatment that doctors consider not clinically indicated, they are under no legal obligation to provide it  – although they should seek a second opinion when there is any discord between their views and that of the patient.

It is well-established in law that patients cannot demand clinically inappropriate treatment, and that the court cannot demand what clinicians consider to be clinically inappropriate treatment on P’s behalf. There is no obligation to provide ‘futile’ treatment (Burke)

So far as the general position is concerned, we would endorse the following simple propositions advanced by the GMC:

i) The doctor, exercising his professional clinical judgment, decides what treatment options are clinically indicated (i.e. will provide overall clinical benefit) for his patient.

ii) He then offers those treatment options to the patient in the course of which he explains to him/her the risks, benefits, side effects, etc involved in each of the treatment options.

iii) The patient then decides whether he wishes to accept any of those treatment options and, if so, which one. In the vast majority of cases he will, of course, decide which treatment option he considers to be in his best interests and, in doing so, he will or may take into account other, non clinical, factors. However, he can, if he wishes, decide to accept (or refuse) the treatment option on the basis of reasons which are irrational or for no reasons at all.

iv) If he chooses one of the treatment options offered to him, the doctor will then proceed to provide it.

v) If, however, he refuses all of the treatment options offered to him and instead informs the doctor that he wants a form of treatment which the doctor has not offered him, the doctor will, no doubt, discuss that form of treatment with him (assuming that it is a form of treatment known to him) but if the doctor concludes that this treatment is not clinically indicated he is not required (i.e. he is under no legal obligation) to provide it to the patient although he should offer to arrange a second opinion.

§50,  Burke v General Medical Council [2005] EWCA Civ 1003[2006] QB 273 (my emphasis)

In sum, “ a patient cannot demand that a doctor administer a treatment which the doctor considers is adverse to the patient’s clinical needs” (§55 Burke v General Medical Council [2005] EWCA Civ 1003[2006] QB 273)

In respect of patients who lack capacity to make their own decisions about treatment, the principle laid out in Aintree v James [2013] UKSC 67 is that the Mental Capacity Act 2005 is concerned with enabling the court to do for the patient what he could do for himself if he had capacity to make the relevant decision, but it goes no further than that.  This means that the judge in the Court of Protection has no greater powers than the patient would have if he were capacitous. Patients cannot demand that doctors administer treatment which the doctor considers is not appropriate – and nor can the judge.

In this case, doctors had determined that nutrition would not be appropriate and so the judge is not able to order that the patient should receive it.

What happened at the hearing?

The hearing lasted just under an hour.  

Jack Anderson, counsel for the Trust provided a short summary of the case, outlining the treatments that are not on offer (including nutrition), and the treatments that are on offer.  

Concerning the treatments on offer, he said: 

The Trust is prepared to offer, if the court were to decide it were in P’s best interests, continued hydration.  But for the reasons in the Position Statement, it’s submitted that it’s not in his best interests, in a situation where he won’t regain consciousness, and has no opportunity to experience any positive quality of life but may be experiencing negative quality of life in the form of distress, pain and discomfortIt is also the Trust’s position that it would like to administer a continuous infusion of morphine and midazolam, carefully titrated. This would minimise pain, and not have any adverse effect on his life expectancy.  The alternative is to administer pain relief on an ad hoc basis, but the disadvantage of that is that it won’t take effect until it’s been prepared, administered, and taken effect in the body – so P would experience distress at the onset of any episode.  Also, that mechanism of delivery makes it more difficult to tailor the pain relief so that the minimum, and no more than the minimum, pain relief is administered at the time it is needed.  The Trust has secured a second opinion [from a neurorehabilitation specialist] who is in broad agreement with our application.”[1]

He  added that he understood why the family would like the opportunity to obtain their own evidence and the Trust was “not in principle opposed to allowing them time to do so, so long as that doesn’t impact on the clinical decision-making in the meantime, and providing also that IV administration of morphine and midazolam can be implemented so that any pain or discomfort is relieved”. 

Katie Gollop, counsel for P via the Official Solicitor expressed her sympathy for the family “who must be in a traumatised condition”.  She said: “The Official Solicitor is sensitive to the fact that they feel they would have liked to be having these conversations last week, rather than between a rock and a hard place now, in terms of the treatments said to be available against a clock that is allowing them rather less time than they might otherwise have”.  

This references the family view that the Trust should have applied to the Court much sooner – at least at the point when the decision was made not to continue to provide clinically assisted nutrition (on 15th February 2022).

Katie Gollop also wanted to “grasp the nettle” (her words) of “the treatment that is and isn’t on offer”.  She noted that “the hospital has said it will not provide nutrition” and that “the court cannot order the provision of treatment”.  But went on to suggest the following” 

Gollop:  On the other hand, and in circumstances where arguably there has been some delay – since it was decided that P should be for palliative care only on 15th February – then in the case of a party who approaches the court for judicial determination (as opposed to not going to court), there is a question about how far that party would then go to enable the court process fairly to take place.  Otherwise, the applicant can dictate, or steer, that which is open for judicial determination and that which is not.

Judge:  My understanding was that to continue NG feeding is positively dangerous. Feed was coming out of his nose, he was aspirating, his stomach was distended, it was causing all sorts of difficulties.

Gollop His stomach is not functioning.  The only alternative to NG feeding is Total Parenteral Nutrition [TPN]. TPN is the only option available and that’s what the family would like some evidence about, to look at that issue, rather than feeding into the stomach.  There is evidence in paragraph 9 of the Trust’s position statement that TPN may cause infection and thrombosis. But without food he has no chance.  It’s not expected he’ll die imminently, but he’s obviously being weakened by days and weeks of no food.  So, I would ask for there to be some consideration, on a purely interim basis – no more than 10 days – that the Trust might see its way to provide IV nutrition in circumstances where they have decided to make an application for a judicial determination.

Sophy Miles, representing the family, expressed gratitude for the submission from the Official Solicitor and said she “would invite Your Lordship to give consideration to the proposal for TPN”.  The family had located both a gastrointestinal expert and a neurology expert who would be able to provide reports relatively quickly, if the judge were minded to order an adjournment.

The judge expressed concern about adjourning the hearing and delaying a decision on the grounds that P might be in pain and Sophy Miles reported that “having had the benefit of advice from a legal team, my clients do agree to pain relief being provided on the basis of the care plan, and on the understanding that it’s not going to hasten P’s death”.

The following exchange then took place between Jack Anderson (counsel for the Trust) and the Judge:

Anderson:  On TPN – my instructions are clear.  That isn’t treatment they’re willing to offer at the current time, even on an interim basis.

Judge:  In my view, there’s a need to keep a level playing field while I collect all the information necessary to resolve this case.

Anderson:  It’s not within the court’s jurisdiction to order clinicians to give a treatment.

JudgeI wasn’t considering making an order that they should do so.  I can see why the NG feeding had to end – that was causing irreparable damage. But in terms of the TPN, the Trust is only raising the risks of thrombosis and infection.  The parents would say those are risks that should be taken because they don’t want P to pass away before the court has made a decision.

There was then some discussion about how quickly the expert reports from the family’s gastroenterologist and neurologist could be supplied (“I don’t think it can wait for a month”, said the judge). The implication was (I think) that P might well have died by then.

Katie Gollop (for P via the Official Solicitor) then invited the judge to make a “declaration” that nutrition was in P’s best interests – rather than an “order” requiring clinicians to provide it.  She drew a comparison with the Charlie Gard case in which the hospital was not prepared to provide experimental treatment (available abroad) and the domestic courts had ruled that ongoing treatment was not in the child’s best interests – but the hospital continued to provide it “so that the judicial process [the application to the European Court of Human Rights] could be properly completed”.   The position was “somewhat fudged” (because the hospital concerned was willing to provide treatments contrary to the child’s best interests on an interim basis) but involved discussion of “the difference between a declaration and an order”. Drawing on that case, she said:

We’d like to invite you to provide a judicial determination – and at the moment, the clinicians are taking the perspective:  ‘we’ll be the arbiters of the dividing line between the clinical, over which you have no jurisdiction versus those treatments we say we are willing to provide if you consider it in P’s best interests’.  We would like you to provide a declaration that nutrition is in P’s best interests – not an order.”

Jack Anderson (for the Trust) responded:

The distinction between a ‘declaration’ and an ‘order’ seems artificial, if what is intended is that the court is applying a degree of pressure on clinicians to deliver treatment which clinicians don’t consider appropriate.  There is nothing unsatisfactory that clinicians have identified that there are those treatments they are not willing to provide, and treatments where there’s a dispute – in that treatment is offered, but clinicians don’t consider them in P’s best interests.”

He added, in relation to the facts of the matter, that although the risks are different, the Trust’s view is that neither TPN nor NG feeding is in P’s best interests in any event.

You don’t accept that it’s in his best interests to have IV fluids either,” said the judge, “but that is something you are willing to accept”.

Each particular treatment falls on one side of the line or the other”, said Jack Anderson for the Trust.  “There is nothing untoward about that.  It’s important that we understand the desire of the family to obtain their own evidence, but fundamentally these proceedings are about the treatment of P, and clinicians have to make a decision about what treatments they can offer.  It is not appropriate for the court to put pressure on the clinicians.”

Judgment

In a short ex tempore judgment, Mr Justice Moor first briefly outlined the facts of the case, and then made some decisions.

On withdrawal of IV fluids, he said: “it would be wrong for me to deal with that substantively today.  The parents, who oppose the Trust’s application, have had no opportunity to put evidence to the court, and I’ve had no opportunity to see their case, or hear what their expert opinion might say.  For there to be a fair trial under Article 6, they must have that opportunity. I am not going to determine those substantive matters today”. 

On pain relief, he said: “I watched a short video of P in hospital.  I am no doctor, but I was concerned he might be in pain and distress.  This is also something the treating clinicians were concerned about, and [the Official Solicitor’s agent] who went to see him.  …. We cannot have P in pain and distress.  I am grateful to Ms Miles for indicating to me today that the parents do now accept morphine and diazepam[2].”

On TPN, he said: “This is a matter that has troubled me.  I understand Mr Anderson’s position that I cannot require treating clinicians to offer a treatment that is against their belief about what is right for this patient. There have been some criticisms about the delay in bringing this case on, and I make no comment on that.  But if it had come before the court two weeks ago, the issue would not be so stark as it is now.  I need to adjourn this case to hear this case fairly. I would not want P to die of starvation between now and the case being heard.  I understand there are downsides to TPN.  But the infections and complications of TPN are not in the same league as the problems of NG feeding.  I do see the force of what both Ms Gollop for the OS and Ms Miles for P’s parents say about effectively maintaining a level playing field until this case can be determined.  I am not making an order.  I am not even making a declaration.  All I ask in this judgment is for the Trust to consider it again, on the basis that this court should have the ability to deal with this case at a final hearing – rather than the matter being taken out of the court’s hands by what the Trust itself accepts would be a very unpleasant death.  I intend merely to ask the Trust to consider the matter again.”

This is as close as I have ever heard a judge come to putting pressure on clinicians to administer a “clinically inappropriate” treatment that is not on offer as an ‘available option’ before the court.

The case will be back in court on 14th March 2022.  It’s listed to be heard at 10.30am before Mrs Justice Judd.

Celia Kitzinger is co-director (with Gillian Loomes-Quinn) of the Open Justice Court of Protection Project, and co-director (with Jenny Kitzinger) of the Coma and Disorders of Consciousness Research Centre.  She has published widely on end-of-life decision-making for people in prolonged disorders of consciousness.  She tweets @KitzingerCelia


[1] We are not allowed to audio/video record hearings, and so the quotations I have used from the hearing are as accurate as possible based on the notes I touch-typed during the hearing itself, but they are unlikely to be verbatim.

[2] This was an error – he meant midazolam and was corrected by Jack Anderson before the end of the hearing.

Photo by Pawel Czerwinski on Unsplash

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