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Confidentiality & Consent: What is expected, and when is it safe to override them?

Stephen Hooper, Senior Associate, Clyde & Co LLP, London - Stephen.Hooper@clydeco.com

Patient consent and confidentiality are at the heart of every clinician’s day-to-day practice.  The opening paragraph of the GMC’s guidance document, Decision Making and Consent1, sums  up their importance: “Consent is a fundamental legal and ethical principle. All patients have the right to be involved in decisions about their treatment and care and to make informed decisions if they can. The exchange of information between doctor and patient is essential to good decision making. Serious harm can result if patients are not listened to, or if they are not given the information they need - and time and support to understand it -  so they can make informed decisions about  their care.”

In many situations, these concepts, well-known to all clinicians (not least following the well-known Montgomery judgment2 in 2015), are easy enough to abide by, at least in principle.  All clinicians will do their utmost to respect their patients’ wishes, their right to self-determination about the care they receive, and the life decisions they make.  But what about the occasions where the lines are blurred and a patient’s right to make their own decisions puts them, or others, at risk of harm or suicide? When is it acceptable to override patient confidentiality or consent, in the best interest of the patient or others? It is worth reviewing the key legal principles, in order to try and navigate what can be difficult issues.  

Issue 1: Does the Patient Have Capacity?

This will often be the determining factor in deciding what to do (or indeed not do).  Section 1(2) of the Mental Capacity Act3 2005 (MCA) states that all people over the age of 16 must be assumed to have capacity, unless it is established that they lack it.  Capacity is time and decision specific, meaning that even a person who lacks capacity for certain matters, might still have capacity for the particular issue under consideration.  Someone might be incapable of managing their financial affairs, but nevertheless be able to make their own decision about whether to undergo surgery or not.  Capacity can also fluctuate, so it would be wrong to assume that just because a patient lacks capacity today, they will lack it tomorrow.  

A person is not to be treated as lacking capacity because of a lack of intelligence or a disability which renders them unable to process information as quickly or thoroughly as the average patient.  The expectation is that the clinician will exhaust all practicable steps in helping the patient to make their own decision (for example by arranging for an interpreter, Speech & Language Therapist or Advocate to assist), before determining that they lack capacity (s.1(3) MCA).  

Of crucial importance, a patient is not to be deemed to lack capacity just because they make what might objectively be seen as poor life choices (s.1(4) MCA).  That means there will be occasions where a clinician is confronted with a patient who has decided not to eat, not to take their medication or even to take their own life, and that decision has to be respected.  

A person is 'unable to make a decision for himself' if he is unable to (a) understand the information relevant to the decision; (b) retain that information; (c) use or weigh that information as part of the process of making the decision; or (d) communicate his decision whether by talking, using sign language or any other means (s.3(1)). An inability to undertake any one of these four aspects will be sufficient to deem the patient to lack capacity, provided the inability is because of the impairment/disturbance of the mind.

Whatever the outcome of the assessment, clinicians should ensure that it has been thoroughly considered and that it is clearly documented in the patient records.  A simple note of “the patient lacks capacity”, with no explanation as to how that decision has been arrived at, is unlikely to stand up to scrutiny, particularly if judicial intervention (for example, via an application to the Court of Protection) is made.

Issue 2: Imposing Treatment on a Patient Who is Unable to Consent

If a patient is deemed to lack capacity, where appropriate and necessary, treatment can be imposed without their consent.  This will typically apply in one of two circumstances:

1. They lack capacity under the Mental Capacity Act 2005; or
2. They are detained under the Mental Health Act 1983 and the treatment falls within the terms of s.63 or s.58 of that Act;

A Deprivation of Liberty Order (DOL) might also be required, for example where the patient needs to be kept in a particular care home or hospital against their will, or regularly restrained for the purposes of administering treatment.  

If a patient who lacks capacity is in hospital, Section 63 of the Mental Health Act allows for treatment to be provided in the patient’s best interests, where consent is not required " for any medical treatment given to him for the mental disorder from which he is suffering…if the treatment is given by or under the direction of the approved clinician in charge of the treatment". The key is that the treatment administered must be required as a result of the mental disorder which robs the patient of their capacity.  For example, a patient who refuses to eat because they have a mental health disorder which impairs their mind and compels them to refuse food, might justifiably be fed against their will, via a nasogastric tube.  That principle is set out in Section 145(4) MHA, where “medical treatment” is “a reference to medical treatment the purpose of which is to alleviate, or prevent a worsening of, the disorder or one or more of its symptoms or manifestations.”  The key principle underpinning all of this is that the treatment administered must be in the patient’s best interests.

Issue 3:  the Patient Who Has Capacity, But Makes Poor Choices

This can be the most distressing and complex of circumstances for any clinician to face.  The malnourished teenager who refuses to eat; the diabetic man who repeatedly fails to take his insulin injections; the bed-bound resident with chronic psoriasis in the care home, who refuses to allow the staff to move him in order to tend to his bed sores; the patient with Emotionally Unstable Personality Disorder who expresses repeated suicidal thoughts, but refuses to engage in counselling or take her medication.   Clinicians may find themselves in a situation where they offer advice or treatment, see it refused and are unable to do anything about it, other than signpost the patient to the support services available, and hope that they choose to avail themselves of those services.  The patient’s right to confidentiality also means that, unless the clinician has the patient’s consent to share the information, they might not be in a position to disclose their concerns to someone who might help, for example another clinician or a relative.  

Are there situations where a patient’s right to consent and confidentiality can be overridden?  The answer is yes, but only in rare circumstances.  The GMC’s guidance document, Confidentiality: Good Practice in Handling Patient Information4, advises that it may be permissible to breach patient confidentiality where it is “balanced against duties to protect and promote the health and welfare of patients who may be unable to protect themselves” (paragraph 50). The emphasis in such cases is often on the potential harm to others, rather than the patient whose information is to be disclosed, for example where there are child protection issues (paragraph 51).  There may be occasions where the disclosure is required by law, for example if the patient in question is known or considered to be at risk of abuse or neglect (paragraph 53); or where the clinician receives information which raises concerns about the potential spread of infectious diseases, or acts of terrorism (paragraph 61).  In such circumstances, the clinician must:

1. be satisfied that the disclosure is indeed required by law;
2. only disclose information relevant to the request or legal requirement; and
3. tell the patient about the proposed disclosure wherever possible, unless doing so would undermine the purpose of the disclosure.

What about the patient who has capacity, discloses a real risk of harm, or even suicide, to a clinician, but denies permission for that information to be shared? The guiding principle is that that patient’s confidentiality and capacity to consent should be respected.  The GMC advises clinicians to explore the reason for the patient refusing consent, encourage them to consent and warn them of the risks of not doing so, but ultimately concludes: “You should, however, usually abide by the patient’s refusal to consent to disclosure, even if their decision leaves them (but no one else) at risk of death or serious harm. You should do your best to give the patient the information and support they need to make decisions in their own interests – for example, by arranging contact with agencies to support people who experience domestic violence.  Adults who initially refuse offers of assistance may change their decision over time”.

Practitioners may therefore find themselves in a position where a patient has advised them that they are contemplating suicide or self-harm, but because they have capacity and have told the clinician neither to act on nor disclose those matters, the clinician can do nothing to intervene, beyond offering and signposting appropriate support.  In August 2021, a consensus statement was issued on Information Sharing and Suicide Prevention5, pooling the combined views of multiple bodies including the Royal College of Psychiatrists and Royal College of General Practitioners.  The consensus view is that confidentiality must be respected, save for exceptional circumstances such as where there is a “substantial public interest” in sharing data concerning the suicide risk of an individual, or in an emergency situation where “it might be more harmful not to share data than to share it”.  Such a situation may arise where there is an immediate risk of serious harm or death to the individual concerned, or to someone else.  In such circumstances, “[t]he immediacy of the suicide risk will be affected by the degree of planning a person has done, the type of suicide method planned or already attempted, and circumstances such as being left alone, refusing treatment, drinking heavily or drug use”.  There may be circumstances where the very fact that a person has expressed suicidal planning might cast doubt over their capacity at that moment, but this will need to be a thoroughly considered, well-documented clinical judgement made on a case-by-case basis, and only the minimum amount of information relevant to mitigate the risk should be disclosed.  This may mean that where a patient with a history of self-harm or suicide attempts, expresses thoughts of possibly taking their life at an unspecified time in the future, without indicating any clear plans as to how they will do so and with a clear instruction that the information should be kept private, the clinician may be powerless to do anything other than offer advice, assurance and appropriate support.  It will then be for the patient to decide whether to avail themselves of that, and for the clinician to hope that they do.

Issues of consent and confidentiality can be thorny, problematic, and at times quite distressing for practitioners to deal with.  At times, the answer will be obvious and straightforward, but there will be occasions where complicated, and sometimes life-or-death decisions will be difficult to make.  Look at each situation individually, and if in doubt, seek advice, be that from colleagues, defence organisations or a lawyer, to ensure you put yourself in the best possible position to navigate what can be a professional minefield.

References:

[1] https://www.gmc-uk.org/ethical-guidance/ethical-guidance-for-doctors/decision-making-and-consent/about-this-guidance
[2] https://www.supremecourt.uk/cases/docs/uksc-2013-0136-judgment.pdf
[3] https://www.legislation.gov.uk/ukpga/2005/9/contents
[4] https://www.gmc-uk.org/ethical-guidance/ethical-guidance-for-doctors/confidentiality
[5] https://www.gov.uk/government/publications/consensus-statement-for-information-sharing-and-suicide-prevention