IN THE MATTER OF THE MENTAL CAPACITY ACT 2005
B e f o r e :
|An NHS Trust||Applicant|
|- and -|
|(by his litigation friend, the Official Solicitor)|
|- and -|
|- and -|
Michael Mylonas QC (instructed by the Official Solicitor) for DJ
Theresa Pepper (instructed by Jackson and Canter) for MJ and JJ
Hearing dates: 5 & 6 December 2012
Crown Copyright ©
This judgment consists of 88 paragraphs. Pursuant to CPR PD 39A para 6.1 no official shorthand note shall be taken and copies of this version as handed down may be treated as authentic.
Mr Justice Peter Jackson:
Hearing in open court, limited reporting restrictions
The nature of the proceedings
What the application is about
1 That DJ lacks capacity to consent to or refuse treatment of any kind
2 That subject to the agreement of DJ's clinical team, it is lawful, being in DJ's best interests, for the following treatment to be withheld in the event of a clinical deterioration:
(1) Invasive support for circulatory problems. This refers to the administration of strong inotropic or vasopressor drugs such as metaraminol that are used to correct episodes of dangerously low blood pressure. They have significant side-effects and can even cause a heart attack, and they have to be administered by a painful process involving needles and usually by the insertion of a central line.
(2) Renal replacement therapy. In this case, this refers to the use of haemofiltration, where blood is filtered via a machine to make up for a lack of kidney function. It again requires a large line to be inserted and for a drug (heparin) to be administered to thin the blood to prevent clotting. This brings the risk of bleeds or a stroke. The process can be very unpleasant for the patient, and may cause intense feelings of cold accompanied by shivering. I shall refer to this as renal therapy.
(3) Cardiopulmonary resuscitation ('CPR'). This can be given when a patient's heart stops. It can take various forms, all of them being intense. These include the administration of drugs such as adrenaline, electric shock therapy and physical compression of the chest and inflation of the lungs. To be effective, CPR is deeply physical and can involve significant rib fractures. A decision about whether to give it has to be made instantaneously.
What the application is not about
DJ's level of awareness
MJ and PJ arrived by the bedside; DJ showed clear signs of recognition, smiled at their approach and mouthed what appeared to be words. He seemed to know appropriately when asked if he was feeling alright by his wife. She combed DJ's hair, during which DJ smiled. DJ was given a paper to read by his son. DJ turned the pages with his left arm. It is not clear to me whether he was reading any of the articles or looking at the pictures in the paper, however he smiled while looking at the paper. During this time he put on and took off his glasses. A nurse put an iPad on a flexible mount attached to a table which DJ could reach. PJ encouraged his father to play a simulated keyboard on the iPad. DJ was clearly interested in the iPad and its mount. He could not play any recognisable tunes on the simulated keyboard, even after his son demonstrated several simple melodies. PJ then opened a communication program with pictographic representations of moods (for example: happy face/sad face/angry face) with a written description under each picture. PJ asked his father to show him what emotion he was feeling. I did not see a consistent response from DJ. DJ appeared to enjoy watching videos on his son's phone. I asked whether DJ was having a good day or a bad day. I was informed that this was a fairly good day, but that he was easily fatigued.
• held PJ's hand
• kissed his wife when she leaned into him
• picked up one of his medical tubes
• looked at his wife when she moved around the bed
• put an object in his mouth
• turned his head to look at her (Ms Baker)
• mouthed what appears to be words when she spoke to him
• smiled at her when she spoke to him and when she said goodbye
• asked by a nurse whether he was comfortable, he nodded 'yes' and appeared to mouth 'thanks' and smile
• told by a nurse that his wife had telephoned, he smiled and made incomprehensible sounds
• he smiled and laughed when being sung to; when the nurse asked him if she was a good singer, he mouthed "yes" and nodded his head while laughing
• he 'chatted' with his family although it was not possible to understand what he was saying
• he smiled and tried to interact
• he laughed at a program on the iPad
Minimally conscious state
The medical evidence
• His overall state is that he has suffered gross muscle wasting despite full feeding as a result of his dependent condition. He suffers from contractures (muscle rigidity). He cannot sit or stand for himself and there are days and weeks when he is unable to sit up. This is a very strong predictor, amongst others, of a poor likelihood of a successful discharge from the unit.
• Neurologically, he has suffered a stroke.
• He is completely dependent on artificial ventilation and requires regular tube suction. He has not breathed unassisted since July and he has an emphysematous lung.
• He has suffered a number of cardiac arrests, with negative consequences for the functioning of his heart.
• His kidney function is extremely fragile, with a maximum function of 20% or so. With each episode of infection, there is a repeated, inevitable decline.
• He is in a minimally conscious state. He functions better with his family than with members of staff, even those with whom he is familiar.
• Daily care tasks such as basic physiotherapy, suction and being turned in bed can cause discomfort, pain and distress. The contractures are similar to very severe cramps, and cause grimacing, raised pulse, breathing and blood pressure, indicating distress and pain.
• It is not possible to prevent further episodes of infection, particularly as DJ is on a ventilator. There is no effective treatment for pseudomonas (first detected in early June), and DJ remains extremely vulnerable. It is almost inevitable that he will face further infections leading to lowered blood pressure and the prospect of further multi-organ failure. The use of antibiotics has diminishing returns. Even if it were possible to liberate DJ from the ventilator, he would inevitably return to it when he next suffered an infection.
I would argue that further treatment for septic shock with hypotension and any artificial renal support would not be of overall benefit to DJ as such treatments would not return him to his former pleasures in life.
Re: cardiopulmonary resuscitation, the risks of resuscitation would be that cardiac massage may result in broken ribs, further damaging weaning prospects and the very real risk of lack of oxygen to the brain as a result of any protracted attempt would surely not be in DJ's best interest given his interest in life.
He concluded that "this is an extremely complicated case in terms of the actual diagnosis and course of events."
The current treating clinical team have said that further treatment is futile and the family disagree. However, futility is a nebulous concept, which has different meanings depending on the individual and the situation. My preferred definitions are as follows:
a. Physiological. If a treatment is given to a patient and that treatment does not have the expected physiological effect, then that treatment can be considered futile. … This is not the current situation, but in my view is the definition of futility used by MJ and JJ.
b. Probability. The likelihood of a given treatment curing the patient is low. In the case of DJ, I estimate that the chance of him surviving to hospital discharge is substantially less than 1%. This is the definition of futility most commonly used by clinicians. However, as a population-based statistic, it is less helpful when applied to individuals.
c. Economic. The definition is often used as a macro-health care level to make decisions about the cost-effectiveness of different treatments. This is the definition of futility used by the National Institute of Health and Clinical Excellence.
In my view, the highly probable event is that DJ will die on intensive care. However, while he continues to respond to the advanced therapies available to the intensive care team, this may be some considerable time in the future -- possibly months, but is unlikely to be years.
I believe the natural history of his current disease process is irreversible.
Taken individually, each septic episode will be amenable to treatment, but it is my view that he will suffer further, progressive brain injury due to hypoxic, ischaemic damage
Consequently, his level of consciousness will fall with time, but this will be a gradual, and drawn-out, progressive process.
The end result of this process will be DJ's death. If the septic episode stopped immediately, then I feel he might live in his current state for years, but completely dependent on others for his activities of daily living. However, I see no compelling reason why the septic episode should stop occurring.
a. No, I do not:
i. For the reasons mentioned above
ii. In the highly unlikely event that DJ survives his current illness, he will not be able to function as the musician he was previously due to the neurological deficits (hemiparesis) that he has developed. I have collected significant evidence that leaves me with the view that DJ would prefer to be dead rather than be unable to make music.
The evidence of the family
4(5) Where the determination relates to life-sustaining treatment he must not, in considering whether the treatment is in the best interests of the person concerned, be motivated by a desire to bring about his death.
4(6) He must consider, so far as is reasonably ascertainable:
(a) the person's past and present wishes and feelings (and, in particular, any relevant written statement made by him when he had capacity)
(b) the beliefs and values that would be likely to influence his decision if he had capacity, and
(c) the other factors that he would be likely to consider if he were able to do so.
4(7) He must take into account, if it is practicable and appropriate to consult them, the views of…
(b) anyone engaged in caring for the person or interested in his welfare.
"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 position of the parties
In favour of treatment in the event of deterioration:
• Life itself is of value and treatment may lengthen DJ's life
• He currently has a measurable quality of life from which he gains pleasure. Although his condition fluctuates, there have been improvements as well as deteriorations.
• It is likely that DJ would want treatment up to the point where it became hopeless
• His family strongly believes that this point has not been reached
• It would not be right for DJ to die against a background of bitterness and grievance
Against treatment in the event of deterioration:
• The unchallenged diagnosis is that DJ has sustained severe physical and neurological damage and the prognosis is gloomy, to the extent that it is regarded as highly unlikely that he will achieve independence again; his current treatment is invasive and every setback places him at a further disadvantage
• the treatment may not work
• the treatment would be extremely burdensome to endure
• it is not in his interests to face a prolonged, excruciating and undignified death
Discussion and conclusions
(1) Although DJ's condition is in many respects grim, I am not persuaded that treatment would be futile or overly burdensome, or that there is no prospect of recovery.
(a) In DJ's case, the treatments in question cannot be said to be futile, based upon the evidence of their effect so far.
(b) Nor can they be said to be futile in the sense that they could only return DJ to a quality of life that is not worth living.
(c) Although the burdens of treatment are very great indeed, they have to be weighed against the benefits of a continued existence.
(d) Nor can it be said that there is no prospect of recovery: recovery does not mean a return to full health, but the resumption of a quality of life that DJ would regard as worthwhile. The references, noted above, to a cure or a return to the former pleasures of life set the standard unduly high.
(2) I consider that the argument in favour of a declaration significantly undervalues the non-medical aspects of DJ's situation at this time. These arguments would undoubtedly carry the day in a case where quality of life was truly awful or non-existent. I cannot find that this is the situation that DJ is in, looking overall at the peaks and troughs and the likely future deterioration. Moreover, as Hedley J put it in NHS Trust v Baby X  EWHC 2188 (Fam), a life from which others may recoil can yet be precious. It may be of some note that counsel were not able to identify at short notice a case in which the withholding of treatment has been approved in a case where the patient's quality of life was comparable to DJs, and where the family was in such clear opposition. In this case, DJ's family life is of the closest and most meaningful kind and carries great weight in my assessment.
(3) Particular care must be taken when making declarations in circumstances that are not fully predictable or are, as here, fluctuating. Making full allowance for the unpleasant, painful and distressing aspects of treatment, I cannot conclude that it would be right to validate, in advance, the withholding of any of these treatments in all circumstances.
(4) I have balanced the various rights enjoyed by DJ and his family in reaching a conclusion: these encompass Articles 2, 3 and 8 of the European Convention on Human RIghts.