“To be, or not to be: that is the question:” Act III, Scene I – Hamlet
You honestly couldn’t make it up. A real life FCEM management viva scenario in front of my eyes.
A 55 year-old man has been brought to the ED by police on a Section 136. It is unclear how the police came to be involved; the patient has told attending paramedics that he didn’t call 999; he doesn’t want any help – in fact, he wants to go home. The paramedic sheet states that they were contacted by the police, possibly in response to a call from a concerned passer by.
He was discharged this morning from a nearby ED following an overdose of paracetamol. He tells you he didn’t need antidote treatment because he “didn’t take enough”. Although he was reviewed by psychiatry and deemed fit for discharge, when he got home he immediately sought to rectify his earlier “mistake” – he took 50 paracetamol 500mg tablets at 16:00, and another 50 paracetamol 500mg tablets at 19:00.
He has consented to blood tests, including paracetamol levels, being performed at triage having presented at the ED at around 23:00. The level is back when you go to see him; it is 140mg/L.
As he has taken a significant amount and a staggered overdose, treatment with n-acetylcysteine is indicated. You prescribe the regimen, but as you sign the prescription for the 16 hour bag, the nurse looking after him appears – he is refusing a cannula and states he does not want treatment because he wants to die.
Believe it or not, this is based on real cases, which have actually happened (though the details have been changed for patient confidentiality). I was fortunate enough to have benefited from a recent regional registrar teaching session on Consent and Capacity in the ED – so massive credit to Dr Bernard Foëx who led the session and guided me to some of the content links below.
So, what to do in this situation? Here’s my step-by-step guide.
1. Talk to the patient
It didn’t actually help in this case, but it is definitely worth taking the time to explore things with the patient. What are their concerns about treatment? Is is the cannula they are objecting to (would they consent to methionine as an alternative agent, albeit a less effective one)?
In the case presented here, talking to the patient ended up in a pointless cyclical discussion. We explain the risk of death, he says he is “not bothered about dying”, we ask if that means he isn’t bothered about living – if so, why would treatment be a problem (which stumps him!). But it’s useful to at least explore thoughts and feelings before committing to a rather complicated set of next steps.
2. Establish whether the patient has capacity
Capacity in the UK is now defined by law, in the Mental Capacity Act 2005. It categorically states:
- that a person must be assumed to have capacity to make decisions unless it is established that he lacks capacity
- that a person must not be treated as unable to make a decision just because the decision seems unwise
- that actions on behalf of someone who lacks capacity must be in their best interest
So, while the patient’s decision to refuse antidote treatment may seem unwise, we have a duty to demonstrate that he lacks capacity (if he does).
The act states that a person who lacks capacity is someone “at the material time […] unable to make a decision for himself in relation to the matter because of an impairment of, or a disturbance in the functioning of, the mind or brain.” He is deemed unable to make the decision for himself if he is unable:
- to understand the information relevant to the decision,
- to retain that information,
- to use or weigh that information as part of the process of making the decision, or
- to communicate his decision (whether by talking, using sign language or any other means)
It is worth noting that there is also stipulation that we should make every effort to optimise patients’ capacity; using translators, visual aids or simple language where necessary (not just where possible).
Several factors complicate our assessment of capacity in the ED; patients are in pain, intoxicated, distressed and sometimes all of the above. Capacity itself is both dynamic and situational; a 19-year-old may not have capacity after half a litre of vodka (most don’t), but most will have capacity the following morning. Reassessment is time-consuming but essential, particularly when treatment decisions are life-or-death.
So back to our case, we explain to the patient that we want to give an antidote to prevent toxic effects from the paracetamol he had ingested. Without treatment, he might develop liver and/or renal failure necessitating transplant or even leading to death. We explain that the treatment had the best chance of success within a narrow timeframe, and that if he changes his mind and decides that he wants treatment at the time he becomes symptomatic (around 48h), the antidote would most likely offer no benefit to him. And, of course, his response is:
“I know, I know. You want to give me the treatment to stop my kidneys and liver failing, and if I don’t have it I might die. But I don’t care. I want to die.”
Sounds a lot like capacity to me.
3. Involve the Psychiatry team
Let’s imagine we now find out that the patient in our case had been diagnosed with “personality disorder“. So the plot thickens. The patient has previously been diagnosed with one of an enormous list of disorders characterised by mind disturbance; “severe disturbances in the personality and behavioural tendencies of the individual; not directly resulting from disease, damage, or other insult to the brain, or from another psychiatric disorder; usually involving several areas of the personality; nearly always associated with considerable personal distress and social disruption.” (See ICD-10 definition)
So, he has an imbalance of the mind.The MCA 2005 recognises that an imbalance of the mind can impair capacity. So does he have capacity? Let’s say (as is not uncommon) the on-call SHO for psychiatry says “no”, and writes so in the notes – then leaves. But our assessment says “yes”. And the patient is still refusing treatment. Where to next?
4. Inform the ED Consultant
A good rule of thumb is that the Consultant should know about any patients in the department necessitating anything other than a standard discharge or specialty referral; the very sick, the actively problematic, and the complicated. In this case, the patient is both problematic and complicated – so the Consultant should clearly know. And two brains are better than one 🙂
5. Discuss with the Trust Legal Team
In our case, the time is 01:30. How on earth do you get in touch with the trust solicitor for legal advice? Well, it’s not easy – and in my experiences it can take almost an hour to do so (in the meantime, I’ve found contacting my professional indemnity body helpful, who gave general advice). The answer is to contact the most senior nurse in the hospital; Matron or bed manager. They will know how things are done in your own trust. In my experiences, we’ve had to contact the administrator on call (to get contact details for the solicitor). The administrator has then woken the solicitor to prepare him for a phone call, and given us his number.
Let’s say (as has happened to me) the solicitor listens to the situation and gives advice as follows:
- If the decision is that the patient does not have capacity, this should be clearly documented by clinicians as senior as possible
- If the patient has capacity, we would require a court order to administer treatment against his wishes
- If the patient does not have capacity, we can treat him in his best interests (i.e. give n-acetylcysteine). We should first consider how we intend to enforce treatment (which can be done with “reasonable force”) – for example, physical or chemical restraint to prevent him pulling the cannula out – and this decision should be made by clinicians as senior as possible
- It is sensible to explain to the patient the plan for enforcing treatment in these circumstances; this may influence his compliance if he knows we can sedate him to administer the medication
- If there is doubt, and a decision can not be deferred until daytime hours due to the necessity of administering treatment within a specific timeframe, it is better to take action to preserve life as this will be viewed more sympathetically by the court.
Of course, I’m not the first doctor in this position. A widely reported case makes for slightly terrifying reading, and of course it would be different – more complicated? – if the patient had no personality disorder, or had an advance directive, or was under 18 – particularly if the parents both have parental responsibility and cannot agree.
So what happens in our case?
We contact the psychiatry registrar, who confirms the SHO’s assertion – that in cases of presumed lethality, treatment refusal by a patient with personality disorder may represent “a manifestation of [their] tendency to adopt a contrary and self destructive stance in response to clinical advice” (in one case study) and therefore the personality disorder impairs the ability to give informed consent; similarly, “people with a personality disorder might at times, when in states of turmoil, for example, exhibit a ‘‘disturbance in the functioning of the mind or brain’’, making the MCA relevant.”
We explain to the patient that we intend to restrain him to administer treatment, since the psychiatry team have assessed him as lacking capacity to refuse potentially life-saving treatment. (This doesn’t change his mind; he simply argues).
We then document clearly the advice of the trust solicitor and discuss it with the medical registrar oncall, under whose care the patient will be admitted, advising her to contact the medical consultant before straying down the path of sedating the patient to administer N-acetylcysteine.
And the final outcome? The patient consents to being given midazolam sedation for the purposes of administering N-acetylcysteine. Figure that one out – he must have been mad after all (or maybe very, very clever..?)