The specialty of intensive care has evolved significantly since its inception, approximately 50 years ago. With further advances in the field and the development of subspecialist branches, the complexity of patients is increasing. A beautiful metaphor of the ‘modern patient’ is offered by the main character in Philip Roth’s novel, Everyman, who contemplates ‘… time having transformed his own body into a storehouse for man-made contraptions designed to fend off collapse.’ The flipside to that has been the increasing intricacy of medical law and ethics. In this chapter we propose to present some of the main issues briefly. The interested reader will find a short list of further reading material at the end of the chapter.
Ethics Principles
While there are a number of ethical models, which have been applied to medicine in general and to critical care in particular, the most commonly taught one is the Beauchamp and Childress approach. The four principles described act as a general guide to most aspects of patient care:
1. autonomy
2. beneficience
3. non-malfeasance
4. justice.
Autonomy
It can be argued that autonomy is the first among equals. The patient is owed the respect for his/her own decision making. It is intended to counter the old attitudes of medical paternalism and support the patient in their choices. There are two aspects that we must note here.
It does not have any bearing on the wisdom of a decision; in other words, we cannot say that the patient’s decision cannot be respected simply because it appears to be unwise.
In order to make a decision, the patient needs to have the capacity to consent or not to the treatment proposed.
We have introduced two further concepts here, consent and capacity, which will be explained later.
Beneficience
All clinical actions taken must be to the benefit of the patient. In other words, if the patient cannot make a decision, the healthcare professionals must act in accordance to the patient’s best interests.
Non-malfeasance
Also known as primum non nocere, it is probably the oldest and possibly the most controversial principle. Intensive care is characterised by very invasive, painful procedures, which sometimes carry substantial risks. Should we stop doing them altogether? Certainly not, but we should consider the harm versus benefit of each manoeuvre. In other words, we need to balance beneficience and non-malfeasance.
Justice
Most commonly this principle has been associated with the fair distribution of resources. While at organisational level this translates into resource allocation over a certain length of time, at individual patient level it is even more controversial. It underlies the issue of the last bed in the ICU or the long-term patient who is unlikely to get better but who is using up precious resources. In other words, cui prodest?
Consent and the Mental Capacity Act 2005
The Good Medical Practice Guide published by the GMC in 2013 stipulates that doctors should work in ‘partnership with the patients, sharing with them information they will need to make decisions about their care’. This means that patients should consent to intensive care. But how do we define intensive care? Here are some of the aspects that may be important to consider:
Intensive care is a process, rather than a geographical location;
Various healthcare professionals are involved, each with a different impact on the patient’s autonomy and dignity;
The degree of ‘burdensomeness’ of the critical care process is individual to each patient;
To date, there is not an accurate prognostic score for mortality or post-ICU morbidity; most of the scoring systems have been validated for populations, not individuals;
There may be significant decrease in a person’s quality of life following an intensive care admission; there are indications that the more prolonged and complex the critical care treatment, the more protracted the recovery to near premorbid condition.
Patients Who Have Capacity
Consent implies a two-way exchange of information between a doctor, or other healthcare professional, and the patient. The latter will have to demonstrate that they are capable of retaining and processing the information given and communicate their decision whether to accept or reject the treatment proposed, or even not to make the decision until a later date. This would demonstrate that they have capacity, as stipulated by the Mental Capacity Act, 2005.
Note that the Act stipulates that capacity is issue specific.
Consent is the legal counterpart of a patient’s autonomy. If the patient is temporarily incapacitated, as most of the ICU patients are, then either the decision should be postponed until the patient recovers capacity, or other pathways of finding the best solution should be followed. Importantly, respect for the patient’s autonomy should also be shown in the way the consent procedure is followed. What would the patient like and need to know about the treatment proposed? There are a few guiding principles.
The Bolam test with the Bolitho amendment – the information provided should be what a ‘reasonable’ doctor would disclose towards a patient; the ‘reasonable’ doctor would be acting in accordance to the practice of a group of peers, provided there is a logical basis for the practice.
The Chester v. Ashfar case moved the standard even higher, to explicitly offering information that a reasonable patient would want to know. The latter principle is usually explained as serious and common risks of a treatment or procedure. However, it is necessary to consider the individual patients as well – consenting a soprano or a chorister for intubation or tracheostomy is different to consenting an engineer to the same procedure.
Following the case of Montgomery v Lanarkshire Health Board, doctors must now ensure that patients are aware of any ‘material risks’ involved in a proposed treatment, and of reasonable alternatives.
Patients Who Lack Capacity
The procedure for patients lacking capacity is more complex. There are several possible solutions.
1. The patient has an Advanced Directive (AD).
2. The patient does not have an AD; the healthcare professional should act in the patient’s best interests.
3. There is disagreement amongst the multidisciplinary team members or between the medical team and the patient’s family with regards to what constitutes the best interests:
(a) for long-term ICU patients, a court decision should be sought;
(b) for short-term and intermediate-term patients, an Independent Mental Capacity Advocate (IMCA) should be consulted.
The Mental Capacity Act has given more importance to the AD than previously. However, there is a plethora of cases in the medicolegal literature which prove that there are multiple ways in which an AD is not applicable in a particular situation, especially in critically ill patients.
Best Interests
The best interests test aims to canvass information regarding the patient’s current and past views, as well as the views of the relatives and the next of kin’s. For example, it can be fairly safely predicted that a member of the Jehova’s Witnesses denomination would refuse a blood transfusion even if it were life saving. However, there have been cases where a former Jehova’s Witness had been given a blood transfusion if proven that he/she were no longer an active member of the denomination. HE v A Hospital NHS Trust (2003) is a prime example of such a case.
Another important point is that should a patient choose to refuse treatment, his/her wishes should be respected; however, should they insist on a treatment, the doctor has the legal right to refuse based on clinical grounds.
Deprivation of Liberty
Article 5 of the Human Rights Act states that ‘everyone has the right to liberty and security of person’. Persons, without capacity, who are under continuous supervision and not free to leave the place where they are being treated are deprived of their liberty. Every patient admitted to intensive care should be considered at risk of deprivation of liberty and those that are unable to consent should be referred for an urgent Deprivation of Liberty Safeguards (DoLS) authorisation. Once in place, the supervisory body will appoint a representative for the patient, and ensure regular review as to whether ongoing deprivation of liberty is required and remove the authorisation when it is no longer necessary. All deaths of patients which occur where a DoLS authorisation is in place should be reported to the coroner.
Withholding and Withdrawal of Treatment: Do Not Attempt Resuscitation (DNAR) Orders
Withholding treatment – not initiating treatment due to no discernable benefit foreseen, usually in irreversible clinical situations, for example not offering vasoactive medication, intubation, renal replacement therapy.
Withdrawing treatment – stopping ongoing treatment because of no benefit detectable, for example stopping inotropic support in refractory end-stage cardiogenic shock with end-organ dysfunction.
Limitation of treatment (ceiling of treatment/no escalation) – occurs when the critical care team are reluctant to make recommendations either for withdrawal of treatment or for continuation of full support; in the words of SA Murray (2008), limitations of treatment are usually applied when ‘we are hoping for the best but expecting the worst’.
DNAR – an order usually put in by a senior clinician to not start cardiopulmonary resuscitation (CPR) on a patient in the event of cardiac arrest; most DNAR orders are initially in place for 48 or 72 hours and the critical care team are advised to revise the decision at the end of the specified time period. It is appropriate to make a DNAR when the patient’s heart is not likely to restart, or when there is no benefit in doing so.
All the principles enumerated above have been subject to numerous ethical and legal debates and are likely to remain so, given the nature of the decisions involved. Importantly, following a landmark judgement in 2014 (Tracey v Cambridge) there is a presumption in favour of patient involvement in the DNAR decision making process and if they lack capacity, their family and carers. It should be remembered that whilst active treatment may be withheld, withdrawn, or a DNAR decision may be put in place, patient care is never withdrawn or withheld.
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