Abstract
This series of articles provides a practical guide to dealing with the complex ethical and legal challenges we face in the provision of Intensive Care. They explain the implications of recent legal rulings and cases (such as "Montgomery" and the tragic case of Charlie Gard), and include discussion of clinical scenarios with which we are all familiar. Each article is written by those who are not only experts in their fields, but who also deal with these issues on a day-to-day basis.
You are the consultant on call. It’s midnight and the phone rings
An 89-year-old woman has been admitted via the Emergency Department with severe breathlessness and is now on a general ward. She is cachectic, with extensive abdominal surgical scars, and is severely demented (with a 4x/day carer package). A medical note relating to ‘referral to a palliative care team’ is found on the electronic system, but there are no details. Her daughter says that she has no further information to offer, but that she has power of attorney. The daughter has earlier refused to accept that a DNAR order be put in place. An hour ago, the patient vomited and aspirated and suffered a cardiac arrest. Five cycles of CPR later, the daughter is insistent that her mother goes to ICU. Your registrar wants to know what to do.
It hasn’t been a good day. Earlier, you were greeted by a senior nurse. She anxiously shows you a Facebook page, frequently updated by family members, which logs the clinical timeline and course of a relative who is unconscious on ICU. The page has attracted comments from many well-wishers. Photographs have been uploaded which identify staff, and some have negative comments attached. Adjacent patients are also visible in photographs. The relatives of one have complained. So has one of the defamed staff. Your ‘legal department’ has been outsourced, and no-one is familiar with issues relating to social media.
For those working in critical care (at every level of seniority and across all disciplines) such problems have become ever more prevalent. Further, the law always seems to be changing and rarely seems to offer ‘black and white’ clarity on what has to be done. This leads to feelings of insecurity and uncertainty: dealing with such issues can be far more frightening than is the management of multi-organ failure.
In the spring of 2017, the ICS organised a one day seminar to explore just these sort of issues. We brought together experts from Psychiatry, Social Care and the Legal world, those who mainly practiced in ‘defense’, but also those more regularly involved in litigation. All who talked were senior and experienced, giving their time pro bono. There was generous discussion time, and feedback was extraordinary. Many spontaneously made contact, calling the day, ‘the best education seminar they’d ever attended’.
In an effort to distil some of what we all learned, representative members of the speakers, organisers and delegates have put together a series of short articles.
They cover Informed Consent (and the significance of the ‘Montgomery Ruling’), Capacity, assessment of ‘Best Interests’, the role of (and access to) the Court of Protection, and even how (and when) to access a Judge at 2 a.m. Exemplar fictitious (but ‘representative of real life’) cases, such as those above, will be offered.
The articles are presented in two parts which will be published in successive issues of this Journal. We hope that you find them easy to read, and that they offer some practical advice and comfort when navigating the legal minefield into which we increasingly feel that we have been parachuted without warning.
Introduction to the first set of articles
When faced with a complex ethical decision regarding whether critical care is to be provided (and with what limitations), the first consideration is whether the patient has capacity. Dr Jim Bolton – a Consultant Psychiatrist – provides a practical guide to doing this with some pertinent examples.
In all situations, you are legally obliged to act in the patient’s best interests. Simon Lindsay – a Defence Lawyer – explains how these are determined (including when a court’s opinion should be sought, even at night) and how best they are documented. Dr Matthew Rowland has created a standard template for such documentation, useful to clarify your thoughts, to present to a judge should this be needed in the event of disagreement over the right course of action, and useful to present should your decision ever be challenged.
Assessing capacity to consent to treatment: A practical guide
Consultant Liaison Psychiatrist, South West London and St George's Mental Health Trust, London
Introduction
Capacity is the ability to make a specific decision at a particular time. Assessing capacity in the general hospital can sometimes be difficult, especially when a patient is acutely unwell. Factors such as anxiety, pain, and the effects of physical and mental illness and their treatment may impair an individual’s ability to make reasoned decisions about their care.
Dealing with human behaviour is often complex and uncertain. However, assessing a patient’s capacity to consent to or refuse treatment is often more straightforward when the legal principles that guide assessment are borne in mind. In this article, these principles are illustrated by case vignettes, based upon anonymised cases from the author’s clinical experience.
Why can assessing capacity be problematic?
Capacity is a legal concept. The law often takes a black and white view of issues, such as whether an individual is guilty or not guilty. In contrast, medicine often recognises shades of grey and clinical uncertainty. When a medicolegal decision is required, the two may not be an easy mix. Legal principles may be clear on paper, but become less so when applied to human behaviour, and complex and changing clinical situations.
In clinical practice, a patient’s capacity is most likely to be called into question if they refuse treatment. It is a legal and ethical principle that a patient’s valid consent must be obtained before starting treatment. Touching someone without their valid consent may constitute an offence of battery. 1 However, health professionals may feel uncomfortable about respecting a patient’s decision if their refusal of treatment carries a significant risk to their health.
Legal jurisdictions
Decision making on behalf of people who lack capacity is governed in England and Wales by the Mental Capacity Act 2005 (MCA) and in Scotland by the Adults with Incapacity (Scotland) Act 2000. The Mental Capacity Act (Northern Ireland) 2016 is expected to come into force within the next few years. In the meanwhile, decision making in Northern Ireland is governed by common law.
This article deals primarily with the MCA for England and Wales; however, many of the principles described are consistent with law across the UK. The MCA applies to all those working in health and social care involved in the treatment and support of those aged 16 years or over who may lack the capacity to make decisions for themselves. Such decisions include those concerning finances, and personal welfare and healthcare.
The MCA is accompanied by a Code of Practice that explains how the Act works on a day-to-day basis and provides guidance for those working with people who may lack capacity. 2 This article also makes reference to the Mental Health Act 1983 (MHA) for England and Wales.
Capacity to consent to or refuse medical treatment
For a patient’s consent to be valid, they must:
Be provided with sufficient information to make the decision; Be acting voluntarily and not coerced into a decision; Have the capacity to make the decision.
The MCA lays out five principles that guide assessment and decision making:
The key principles that underlie the Mental Capacity Act
Every adult has the right to make his or her own decisions and must be assumed to have capacity to do so unless it is proved otherwise. A person must be given all practicable help to make a decision before it is concluded that they lack the capacity to do so. A person is not to be treated as unable to make a decision merely because they make an unwise decision. Anything done for or on behalf of someone who lacks capacity must be done in their best interests. And in a way that is least restrictive of the person’s rights and freedom of action.
The MCA describes a two-stage functional test of capacity, whereby an adult can only be considered unable to make a particular decision if:
They have an impairment of, or disturbance in, the functioning of the mind or brain. This disturbance or impairment is sufficient to make them incapable of making a specific decision at the time it is required to be made.
A person is unable to make a decision if they cannot do one or more of the following:
Understand the information relevant to the decision; Retain the information long enough to be able make the decision; Weigh up the information as part of the process of making the decision; Communicate the decision.
Clinical assessment of each of these steps is considered below.
Understand the information
The risks and benefits of the proposed treatment should be explained. The implications of declining the treatment, and whether any alternatives are available, should also be discussed. This information should be explained at a level appropriate to the individual, making it as easy as reasonably possible for the patient to understand. The GMC provides more detailed guidance on the type of information that a patient may need to understand before making a decision. 3
Retain the information
Concerns about a patient’s ability to retain the necessary information to make a decision may arise from known cognitive impairment, e.g. delirium or dementia. Deficits might also become apparent during history taking. Bedside cognitive testing may help to estimate the severity of any memory impairment. A straightforward way of assessing a patient’s ability to retain the necessary information is to ask them to recall or paraphrase the previous discussion. For more complex and long-term decisions, or where the patient’s ability to retain the information remains uncertain, it may be helpful to return some hours later and to ask the patient to recall the previous discussion.
Weigh up the information
The assessor should consider whether the patient can appreciate the wider consequences of their decision and apply the information they have been given to themselves and their own life. Can they consider the risks and benefits of the options discussed?
Communicate a decision
Communication does not have to be verbal or written. In certain circumstances, it could be by using sign language or simple muscle movements, such as blinking. 1
Considerations when assessing capacity
The following points regarding capacity may be relevant in clinical situations:
Capacity is specific to particular decision at a particular time. It is not an ability to make decisions in general. Some patients may be able to make simple decisions but lack capacity to make more complex decisions. An individual’s capacity to make a decision may fluctuate with changes in their condition, e.g. delirium. The assessor should make their decision on the balance of probabilities – is it more likely or not that the person lacks capacity?
Refusal of treatment
The first of the statutory principles listed in the MCA that guide assessment and decision making is that adults are assumed to have capacity unless shown otherwise. One reason for a patient’s capacity being called into doubt is if they decline the proposed treatment. An example of such a case is given in Case Study 1.
Case Study 1
A 68-year-old man was admitted to hospital for the investigation of gastrointestinal bleeding. He was diagnosed with cancer of the colon and it was judged that his prognosis was good if he underwent surgery. However, the patient declined an operation.
When the patient’s decision was discussed with him, he described both a personal and family history of postoperative complications. There was no evidence of a mental disorder that might impair his capacity to consent to surgery. He was judged to be able to understand and retain the information regarding treatment and that his weighing up of the information was influenced by his previous experiences of surgery. It was therefore concluded that he had the capacity to decline surgery for his cancer.
The case described illustrates the second of the statutory principles of the MCA, that people are entitled to make their own decisions based upon their own values and preferences. This holds even if the decision is considered to be unwise or irrational by the assessor.
When a patient declines a proposed treatment, the assessor should explore the reasons for the decision and provide further information where necessary. If the patient continues to decline, it may be appropriate to allow the patient time to reconsider and, if their decision does not change, to discuss alternative treatments.
When might a psychiatric opinion be required?
In a case such as that described in Case Study 1, it is unlikely that a psychiatric assessment would be required. However, it is appropriate in a complex case where there is uncertainty regarding the patient’s capacity to consent to treatment, particularly when mental illness may be compromising the patient’s decision making. Such a case is described in Case Study 2.
Case Study 2
A 47-year-old woman was assessed in the Emergency Department after sustaining a fractured neck of femur. It was judged that she required urgent surgery to prevent avascular necrosis of the hip. However, she maintained that the hospital staff were imposters and that she was not in a genuine hospital. She therefore refused surgery.
The patient was jointly assessed by an orthopaedic surgeon and a liaison psychiatrist. She reported having a history of schizophrenia but not having recently taken antipsychotic medication. The patient was able to understand and retain information regarding surgery. However, it was judged that she lacked the capacity to consent to or refuse surgery, because her decision was based upon a misperception of reality due to her mental illness which adversely affected her ability to weigh up the necessary information.
Capacity and mental disorder
Capacity may be affected by both chronic mental disorders and transient abnormalities in mental state. Memory impairment in the context of dementia may prevent an individual being able to retain the necessary information. Case Study 2 describes a case where persecutory delusions in the context of schizophrenia prevented an individual being able to adequately weigh up the information given.
Transient mental states such as intoxication with drugs or alcohol, the effects of prescribed medication, anxiety, pain and fatigue may also impinge upon an individual’s decision making ability. However, mental disorder, whether acute or chronic, does not automatically make someone incapable of making healthcare decisions.
The Mental Health Act
In the majority of cases, patients with comorbid mental disorders, including those detained under the MHA, have the same rights as others regarding decisions about their physical health care. The MHA primarily regulates the treatment of mental but not unrelated physical health problems.
The MHA can be used to treat physical disorders that directly cause mental illness, such as thyrotoxicosis causing psychosis, or HIV causing encephalitis. The MHA also permits medical treatment for the manifestations of a mental disorder, such as parenteral feeding in anorexia nervosa, and treatment for the physical consequences of self-harm. In the case described in Case Study 2, the fracture was not a manifestation or direct consequence of schizophrenia, hence surgery could not be undertaken under the MHA.
Even if the MHA could be used to deliver treatment for a patient who lacks the capacity to consent to such treatment, the process of detention under the MHA can be time consuming. In an emergency situation, it may be appropriate to proceed with treatment under the MCA whilst a MHA assessment takes place. This action might be appropriate for the case described in Case Study 3, where a delay in the treatment for a paracetamol overdose carries a significant risk of long-term harm.
The incapacitous patient
If a patient is judged to lack the capacity to consent to or refuse treatment, it should be determined whether they have made provision for future incapacity, such as a Lasting Power of Attorney or an Advance Decision to refuse treatment. 4
Lasting Power of Attorney
A Lasting Power of Attorney (LPA) allows an adult with capacity (the ‘donor’) to appoint someone to make decisions on their behalf (the ‘attorney’) should they lose capacity. The LPA indicates whether decisions can be made on behalf of the individual regarding financial matters, or personal welfare (including healthcare decisions), or both. In order to be valid, a LPA must be registered with the Public Guardian and on the prescribed form.
An attorney must act in accordance with the MCA’s principles and any decision made must be in the donor’s best interests. An attorney has no power to consent to or refuse life-sustaining treatment unless the LPA document expressly authorises this.
Advance Decision
The MCA enables an adult with capacity to make an Advance Decision to refuse a specified treatment under specific circumstances should they lose capacity in the future. An Advance Decision should be followed unless it is uncertain whether the person had capacity when the decision was made, or if there is reason to believe that the person has since changed their mind. An Advance Decision does not need to be written down unless it applies to life-sustaining treatment.
Informal statements
Family and carers of an individual may be aware that they have previously made informal statements about their future wishes for healthcare. Such statements are not legally binding but should be considered in an assessment of the patient’s best interests.
Best interests
Two of the statutory principles under the MCA are that anything done or decision made on behalf of a patient who lacks capacity must be done in their best interests and in the least restrictive way. An assessment of what constitutes a patient’s best interests is discussed in an accompanying article.
Assessing an uncooperative patient
Instances occasionally arise when a patient refuses treatment and they are uncooperative with a detailed assessment of their capacity to make such a decision. An example is given in Case Study 3.
Case Study 3
A 23-year-old man is brought to the Emergency Department by friends who leave after telling staff that the patient has taken approximately 50 tablets of paracetamol. The patient declines to participate with detailed questioning and does not agree to either blood investigations or the administration of intravenous N-acetylcysteine. The patient states that they do not wish to undergo further investigation and treatment and want to leave the Department.
In a case such as that described, the assessor may be uncertain whether to presume that the patient has capacity, recognising that one of the statutory principles of the MCA is that adults are assumed to have capacity unless shown otherwise. If capacity is presumed, the patient’s wishes should be respected.
Alternatively, the assessor may consider that there is sufficient evidence to indicate that the patient lacks the capacity to refuse treatment. If this is the case, decisions about the patient’s care should be made in their best interests.
Capacity may be affected by both chronic mental disorders and transient changes in mental state. In a situation such as that described, it should be considered whether there is any evidence for a mental disorder likely to affect the patient’s capacity. The urgency of the proposed treatment and the implications of the patient receiving treatment should also be borne in mind. The more serious the decision, the greater the degree of capacity required.
The author’s clinical experience of cases such as that described in Case Study 3 is that the patients are usually judged to lack capacity to refuse treatment, bearing in mind that self-harm is strongly indicative of an altered mental state, either chronic or transient, that would affect an individual’s ability to weigh up the necessary information. Self-harm generally occurs in a state of heightened emotional arousal, which dissipates as the patient’s mood improves. Respecting the patient’s expressed wishes may be denying someone who lacks capacity essential treatment.
If the patient is judged to lack capacity and resists treatment or attempts to leave, it should be considered whether it is in their best interests for them to be restrained. Bearing in mind the final underlying principles of the MCA, the degree of force used should be no more than necessary to control the patient’s behaviour and allow the proposed treatment to be carried out. 5
Record keeping
Long-term or significant decisions about capacity should be clearly documented. The record should describe what the decision was, and why and how it was made. It is advisable to explicitly describe the assessment made using the two-stage test of capacity.
Conclusions
As in the cases discussed, assessing a patient’s capacity to consent to treatment may be problematic due to the complexities of human thinking and behaviour. However, the underlying legal principles provide a structure that, if borne in mind, often makes assessment more straightforward.
A patient’s capacity to consent to treatment is often called into question if they refuse the suggested care. If, according to the criteria described in the MCA, they are judged to have capacity to make the decision, this should be respected. If they are judged to lack capacity, it should be considered whether they have previously made legal provision for a future loss of capacity. If not, decisions about care should be made in their best interests.
References
How to decide ‘best interests’ and why it’s crucial to decision-making in complex cases
Simon Lindsay provides advice and support to healthcare organisations, in particular NHS clients, in inquests, court of protection matters, challenges to treatment decisions, health and safety and general clinical practice. He specialises in general medical law and is a nominated partner for NHS Resolution. He has a special interest in mental health and capacity law.
The Mental Capacity Act (2005) makes clear that a medical practitioner must
Take reasonable steps to establish whether a patient lacks capacity before giving or withholding treatment, and then, if the patient does lack capacity. Decide to give or withhold treatment based on whether he or she, on reasonable grounds, considers such actions to be in the patient’s best interests.
If the plan of treatment (or its withholding) is later contested, the prior conscientious application of the best interests test will offer some defence.
But what if a relative demands treatment when the practitioner believes that this is not in the patient’s best interests? The views of those who know the patient well must be considered in determining best interests but are not the sole determinant of the conclusion reached. The clinician is not legally obliged to give treatment (s)he does not believe to be in his patient’s best interests but must offer care which is.
Take, for example, the following scenario. It is late on Saturday night; an 85-year-old man was admitted to hospital earlier in the day with signs of chest infection. He has vascular dementia and had been found to have a mass in his chest six months before. He has been admitted three times with infection in the previous 12 months. He is now starting to deteriorate in hospital. His daughter (his main carer) insists that he be given all possible care, including cardiopulmonary resuscitation, ICU admission, and full organ support if required. The Consultant doubts that this would be of any value but is aware that last time the patient was admitted (to a different hospital), the daughter made several formal complaints including one to the GMC about her father’s care. What should the consultant do?
The daughter cannot direct care. The Consultant’s role here is to be a disinterested assessor, required by law to weigh up the available information, determine the patient’s best interests and then act according to this assessment. Determining best interests requires consideration of at least:
The suffering and detriments involved in clinical treatment. The possible gains to quality and duration of life provided by medical intervention. In considering quality of life were any treatment to be successful, the question is not whether the resulting quality of life is one most would not seek, but whether it is a satisfactory quality of life for this patient if he were able to choose. What the patient might have wanted. This requires knowledge of their past expressed views and cultural and religious beliefs. The opinions of those who know the patient well (including the daughter) might help inform in this regard, but care must be taken to try to assess the reliability of opinions offered. He must consider the patient’s welfare in the widest sense, not just medical but social and psychological
Wide discussion is required, and second medical opinions can help and should certainly be sought where there is dissent between clinicians and next of kin.
What is in a patient’s best interests is rarely absolute and families or carers can often be more flexible than first appeared. Some family members will be intransigent, some clinicians stubborn, but it is usually worth exhausting as many forms of dispute resolution as possible before putting a case before a court, even those where the ultimate decision has to be made by the court rather than the parties. If advocacy (or legal mediation) services are available for the family, this may help them articulate their concerns and better understand the views of clinicians.
Early use of a mediator may be useful to avoid the polarisation of opinions
The role of the Courts
When there is a serious dispute about what is in a patient’s best interests, and when this cannot be resolved (and there is adequate time), the issue should be resolved by the courts. Judges will hear cases even in the middle of the night and at very short notice, but courts always prefer to make decisions based on evidence which is as full as possible and which has been properly tested.
Having access to as full and detailed ‘assessment of best interests’ as is possible will help the judge make his or her decision (see best interests template for a guide to how this may be documented).
Going to court can be costly and can also polarise clinicians and family members. So where there is a window of opportunity – however small – try and reconcile differences and avoid this scenario.
As Mr Justice Francis said in the recent case of Charlie Gard:
I recognise, of course, that negotiating issues such as the life or death of a child seems impossible and often will be. However, it is my clear view that mediation should be attempted in all cases such as this one even if all that it does is achieve a greater understanding by the parties of each other’s positions. Few users of the court system will be in a greater state of turmoil and grief than parents in the position that these parents have been in and anything which helps them to understand the process and the viewpoint of the other side, even if they profoundly disagree with it, would in my judgment be of benefit.
Proposed Template for Documentation of Best Interests Decisions
See online supplementary material.
Disclaimer
The Journal of the Intensive Care Society advises that independent legal advice should be sought before implementing into practice any legal information published in the Journal.
Supplemental Material
Supplemental material for A practical guide to medical ethics for intensivists
Supplemental material for A practical guide to medical ethics for intensivists by Richard Innes, Hugh Montgomery, Jim Bolton, Matthew Rowland, Andrew Hannam, Simon Lindsay and Paul Sankey in Journal of the Intensive Care Society
Supplementary Material
Please find the following supplemental material available below.
For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.
For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.
