The Medicolegal Aspects of End-of-Life Care in the Intensive Care Unit
The majority of people express a wish to spend their last days at home but, in reality, over half will die in hospital (1), and many of these deaths will take place in the intensive care unit (ICU) (2-4). There are many elements to consider when providing end-of-life (EOL) care, but the overarching principle must always be to allow the patient a dignified and comfortable death (2). As well as alleviating the patient’s symptoms and planning the transition to palliative and comfort care, doctors need to be aware of decision-making and advanced directives, and the effects that religious and spiritual beliefs may have on these, and be able to communicate effectively with families and other members of the medical care team. Therefore, EOL care in the ICU requires similar levels of expertise as any other area of ICU practice (1).
Around 60% of the deaths occurring in the ICU happen after active treatment has been withdrawn (5). Withdrawal may be considered when death is imminent, when treatment continuation offers no additional benefit and no longer meets the treatment goals for the patient, or when the subject is raised by the patient, family member or surrogate (1, 2, 5, 6). However, it is important that the decision to withdraw treatment is not based solely on rigid criteria but takes into account the individual patient and their specific circumstances. The proposed benefits, risks and burdens of treatment, which are not always limited to clinical considerations, need to be carefully weighed before the potential overall benefit to the patient can be evaluated (2, 5, 6). Therefore, the clinical course of each patient should be continuously re-assessed, so that treatment goals can be redefined at each stage of the patient’s illness (4). Before withdrawal of treatment commences, the patient and their family should be fully informed about the process, including details of the physiological and physical changes that are likely to occur (4, 5). It is also vital that family members clearly understand that the withdrawal of treatment does not mean the withdrawal of care (4)!
The UK General Medical Council recommends that death should be a specific discussion topic whenever a patient’s expected remaining lifespan is one year or less. It has been estimated that fewer than half of all patients realise that they are dying, so it is important that their doctor is able to recognise that death is near. However, determining when a patient is nearing the end of their life is challenging, particularly in non-cancer patients, and many doctors tend to over-estimate survival, especially if they are familiar with the patient. Clinicians usually base their estimations on personal impressions or various prognostic tools, which may be disease-specific (1).
As a patient approaches death, common symptoms include pain, breathlessness, incontinence or constipation, restlessness, depression and confusion, although many others may also be experienced (1, 4). Of these, the one of most concern to patients is pain. It is therefore important that this is managed effectively and that treatment is planned on an individual patient-by-patient basis. However, maximising pain relief can sometimes cause other unintentional morbidity and in some cases can even hasten death, a concept known as the ‘double effect’. This poses a dilemma for the clinician, but as long as the intention is to treat the pain and not cause harm to the patient, the decision to offer medication is supported, both ethically and legally (1). Similarly, at a certain point in the dying process, artificial nutrition and hydration does not improve the outcome for a terminally ill patient and may actually increase the risk of nausea and aspiration, causing the patient distress. The timing of precisely when to withdraw this treatment often comes down to clinical experience and personal judgement but should always respect the patient’s wishes, autonomy and dignity (4).
For patients who are dying, the alleviation of suffering is as important as curative treatments. Therefore, the importance of palliative care, which aims to optimise quality of life by anticipating and treating distressing symptoms (2), cannot be underestimated. Despite this, the engagement of a palliative care team to assist the primary care team in EOL care in the ICU can sometimes be seen as an admission of failure, whereas it should really be viewed as a valuable adjunct (5, 7). Currently, palliative care usually only commences after the decision to withdraw treatment has been made (5), despite the fact that the use of a palliative care team early in the course of a critical illness is not only beneficial to the patient, but can also help the family to deal with the illness of a loved one more effectively (1, 2, 4).
Effective communication is vital when making decisions on whether to withdraw specific treatments or types of care. Ideally, these discussions should take place early in the doctor-patient relationship, while the patient retains the capacity to communicate their wishes, but there should still be further communication with the wider family when the actual time comes to consider treatment withdrawal (1). Care that is inappropriate or discordant with the patient’s wishes represents a largely unrecognised source of medical negligence and can lead to serious consequences, such as the inappropriate prolongation of life or administration of non-beneficial therapies (7).
Where a patient lacks the capacity to make decisions for themselves, a surrogate should be appointed to make decisions on their behalf, while taking into consideration the patient’s previously expressed wishes (1). Often, this surrogate will be a member of the patient’s immediate family. It is therefore important that discussions involve family members and that frequent updates on the patient’s condition are given (2). Increased collaboration and communication results in more appropriate care (8), and when decision-making is shared between the medical team and family members, increased satisfaction with EOL care has been reported (2, 8). Conversely, time constraints, disagreements between members of the medical team, limited family medical knowledge and a lack of training among healthcare providers about conducting difficult conversations with patients and their families can all be barriers to good communication (3, 4, 6).
Another purpose of early discussions between the doctor and patient is to determine the existence of any advance directives, such as Do Not Resuscitate (DNR) orders, living wills and powers of attorney (1, 4, 5) . Although most patients do not complete such directives, where they do exist, they can assist the medical team and family members in achieving the patient’s wishes (1, 2). In a minority of cases, patients lack both the capacity to make decisions themselves and a family member to make them on their behalf. In these scenarios, decisions about withdrawal or limitation of care may need to be made by the medical team (1, 5). In England and Wales, an Independent Mental Capacity Advocate can also be appointed, who has the authority to make enquires about the patient and contribute to decision-making, but cannot make decisions on the patient’s behalf (5).
While good communication is considered key to achieving the best possible outcome, it is also important to acknowledge cultural differences exist in the level of information that should be disclosed, and a failure to recognise these can lead to unwanted outcomes and interactions during EOL care. Not all cultures share the Western belief that bad news should always be disclosed to the patient. In some cultures, it is considered inhumane and unethical to inform a patient that they are suffering from a terminal illness. Some communities also value family-based decision making over choices made solely by the individual. It is therefore important that medical staff in the ICU determine how much information the patient requires and precisely what role family members will play in the decision-making process (1).
Issues surrounding EOL care in the ICU are not limited to those of treatment withdrawal and resuscitation, as spiritual and cultural needs should also be addressed. The role of palliative care teams in providing a more patient- and family-focussed programme of care for those nearing death should not be underestimated. Good communication, both within the medical care team, and with the patient and their family, is also vital. However, it is inevitable that there will occasionally be disagreements between clinicians and family members, so measures should be put in place to facilitate open discussion between all parties (1, 6).
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