Key points
Sixty per cent of deaths in critical care occur following withdrawal of treatment.
Treatment withdrawal in critical care is associated with ethical issues that can make the process challenging.
Good communication with all involved medical disciplines, families, and, where possible, patients is paramount.
An individualized approach to patients is required to provide the best possible care for patients.
Hospital-based palliative care teams provide expertise and support for patients and staff in critical care units.
Who do we consider for treatment withdrawal?
Decisions on treatment withdrawal should always be individualized to patients and their particular circumstances on the ICU, but it may be useful to consider the reasoning behind treatment withdrawal as falling into three broad categories as outlined by Halevy etal.:3
Imminent death: Patients who continue to deteriorate despite aggressive best therapy, who are likely to die in the near future—regardless of whether treatment is continued or stopped.
Qualitative reasons: Withdrawal of treatment on the presumed basis of an overwhelmingly poor neurological or functional outcome resulting in continuing coma or severe neurological or functional disability, such as post-hypoxic brain injury.
Lethalconditions: Patients with coexisting severe systemic disease, making prolonged survival after critical illness unlikely, such as metastatic malignancy.
Ethical dilemmas in treatment withdrawal
Treatment withdrawal in the ICU involves a number of ethical considerations. Often patients are too obtunded and lack capacity—either as a result of sedative medications or as a consequence of the underlying disease process—to engage in any meaningful discussions about treatment withdrawal. The patient’s wishes in such circumstances are often unknown, and the burden of decision-making usually falls to the ICU multidisciplinary team (MDT). The General Medical Council (GMC) released specific end-of-life guidance in 2010,4 which outlines the ethical principles that are helpful when attempting to navigate these difficult situations.
Equalities and human rights
Patients who are approaching the end of life deserve the same quality of care as all other patients and must be treated with dignity, respect, and compassion. They still have a right to the privacy and confidentiality afforded to any patient receiving active treatment.
Presumption in favour of prolonging life
Decisions concerning potentially life-prolonging treatment must start from the presumption in favour of prolonging life and not hastening death. However, the GMC guidance states clearly ‘there is no absolute obligation to prolong life irrespective of the consequences for the patient and irrespective of the patient’s views, if they are known or can be found out’.
Presumption of capacity
Patients are assumed to have capacity until proved otherwise. If the patient’s capacity is impaired, it is the clinician’s duty to provide the patient with all the necessary help and support to maximize their ability to understand, retain, and use the information provided to reach a decision.
In the context of ICU treatments, it is likely that the patient will not have the necessary capacity to make a decision regarding ongoing management. Treatment decisions will therefore fall to the responsible clinician, and the GMC guidance outlines a clear stepwise approach to be used in these circumstances.
The clinician must:
Be clear what decisions about treatment and care have to be made.
Search the hospital records and/or general practitioner (GP) records for any information pertaining to potentially legally valid advanced directives or decisions regarding treatments.
Check whether someone else holds legal authority to decide which treatment options would provide best overall benefit for the patient. It is vital to remember that some legal proxies may not hold the power to make health care-related decisions.
Where no legal proxy exists, the clinician responsible for the patient’s care must take responsibility for deciding which treatment will provide overall benefit to the patient. The clinician must consult those close to the patient and other members of the MDT (including GPs if appropriate) to help them formulate a decision.
In England and Wales, if there is no legal proxy, close relative, or other person who may have an insight into the patient’s wishes, the clinician must approach the relevant authorities regarding the appointment of an Independent Mental Capacity Advocate (IMCA) as required by the Mental Capacity Act 2005. IMCAs have the authority to make enquiries about the patient and contribute to the decision-making process but cannot make a decision on behalf of the patient.
The concepts of ‘futility’ and ‘overall benefit’
Futility is a term often utilized in the context of ICU documentation, but it is not actually used in the GMC guidance. The concept of futility is not new; indeed, the Hippocratic Oath included a promise not to treat patients who were ‘overmastered by their disease’.5 Despite its enduring use, the term has still defied consistent definition, with multiple offerings being found in the medical literature (Table 1).6–9
Definitions and subtypes of futility (reproduced from reference6)
| Physiological | Treatment that cannot maintain acceptable physiology |
| Quantitative | Treatment that has <1% chance of succeeding |
| Qualitative | Treatment that cannot achieve an acceptable quality of life |
| Imminent demise | Starting treatment will not change the fact the patient is imminently dying |
| Lethal conditions | The patient has an underlying condition that will not be affected by proposed treatment and that will lead to death within weeks to months |
| Physiological | Treatment that cannot maintain acceptable physiology |
| Quantitative | Treatment that has <1% chance of succeeding |
| Qualitative | Treatment that cannot achieve an acceptable quality of life |
| Imminent demise | Starting treatment will not change the fact the patient is imminently dying |
| Lethal conditions | The patient has an underlying condition that will not be affected by proposed treatment and that will lead to death within weeks to months |
Definitions and subtypes of futility (reproduced from reference6)
| Physiological | Treatment that cannot maintain acceptable physiology |
| Quantitative | Treatment that has <1% chance of succeeding |
| Qualitative | Treatment that cannot achieve an acceptable quality of life |
| Imminent demise | Starting treatment will not change the fact the patient is imminently dying |
| Lethal conditions | The patient has an underlying condition that will not be affected by proposed treatment and that will lead to death within weeks to months |
| Physiological | Treatment that cannot maintain acceptable physiology |
| Quantitative | Treatment that has <1% chance of succeeding |
| Qualitative | Treatment that cannot achieve an acceptable quality of life |
| Imminent demise | Starting treatment will not change the fact the patient is imminently dying |
| Lethal conditions | The patient has an underlying condition that will not be affected by proposed treatment and that will lead to death within weeks to months |
Common end-of-life drugs
| Drug | Indication | Starting doses |
|---|---|---|
| Morphine/opiate | Pain or dyspnoea | 1.25–2.5 mg i.v./s.c. per hourly |
| Hyoscine butyl bromide/anticholingeric | Respiratory tract secretions | 20 mg s.c. per hourly |
| Midazolam/benzodiazepine | Dyspnoea and agitation | 1.25–2.5 mg s.c. per hourly |
| Haloperidol/butyrophenone | Nausea and vomiting or refractory agitation | 0.5–1.5 mg s.c. per 4 hourly |
| Drug | Indication | Starting doses |
|---|---|---|
| Morphine/opiate | Pain or dyspnoea | 1.25–2.5 mg i.v./s.c. per hourly |
| Hyoscine butyl bromide/anticholingeric | Respiratory tract secretions | 20 mg s.c. per hourly |
| Midazolam/benzodiazepine | Dyspnoea and agitation | 1.25–2.5 mg s.c. per hourly |
| Haloperidol/butyrophenone | Nausea and vomiting or refractory agitation | 0.5–1.5 mg s.c. per 4 hourly |
Common end-of-life drugs
| Drug | Indication | Starting doses |
|---|---|---|
| Morphine/opiate | Pain or dyspnoea | 1.25–2.5 mg i.v./s.c. per hourly |
| Hyoscine butyl bromide/anticholingeric | Respiratory tract secretions | 20 mg s.c. per hourly |
| Midazolam/benzodiazepine | Dyspnoea and agitation | 1.25–2.5 mg s.c. per hourly |
| Haloperidol/butyrophenone | Nausea and vomiting or refractory agitation | 0.5–1.5 mg s.c. per 4 hourly |
| Drug | Indication | Starting doses |
|---|---|---|
| Morphine/opiate | Pain or dyspnoea | 1.25–2.5 mg i.v./s.c. per hourly |
| Hyoscine butyl bromide/anticholingeric | Respiratory tract secretions | 20 mg s.c. per hourly |
| Midazolam/benzodiazepine | Dyspnoea and agitation | 1.25–2.5 mg s.c. per hourly |
| Haloperidol/butyrophenone | Nausea and vomiting or refractory agitation | 0.5–1.5 mg s.c. per 4 hourly |
Unfortunately, the use of ‘futility’ in the medical notes will always be a subjective assessment that is based on the opinions and values of the clinician at that point of time. It risks placing a value judgement on predicted outcomes that the patient may have actually judged to be acceptable if they had the capacity to make a decision themselves. This may reflect a perceived need by clinicians to limit patient and family autonomy in the context of withholding potentially life-sustaining treatment. As such, it is not used in the GMC guidance on end of life.
Instead, the GMC guidance requires a clinician to weigh the proposed benefits, burdens, and risks of treatments before coming to a conclusion regarding the potential overall benefit to the patient. Benefits, burdens, and risks associated with treatment options are not always limited to clinical considerations and a clinician must be mindful of this when making an assessment. For example, it is unlikely to be of overall benefit to the patient to give potentially life-sustaining but incredibly burdensome treatment in the last days of life when the focus of care has already changed from active treatment to palliation.
Communication surrounding treatment withdrawal
Interdisciplinary communication
Ideally, decisions surrounding treatment withdrawal and the transition to end-of-life care should be made by a multidisciplinary ICU team, with involvement of the appropriate parent specialities. Unfortunately, interdisciplinary communication is often suboptimal,10 despite the recognition by patients and family that it is an integral component of good end-of-life care.11 Poor interdisciplinary communication and conflict between colleagues regarding end-of-life decisions are associated with increased levels of stress and symptoms of burnout and depression within the ICU community.12,13 Improving interdisciplinary communication not only improves the patient and family experience but also the ICU working environment.
Communication with the family
In 2005, a joint consensus statement from five international critical care societies outlined the importance of ‘shared decision-making’ with regard to treatment withdrawal in the ICU.14 A shared decision is defined as one where ‘responsibility for decisions is shared jointly by the treating physician and the patient’s family’.14 Despite this, large international differences still exist regarding the extent of family involvement in end-of-life decisions and encountering a family who do not wish to be involved in these decisions, while increasingly uncommon, can still happen. Figure 1 outlines the steps in the shared decision-making model, whereas Figure 2 illustrates best practice for MDT family communication.
The shared decision model (adapted from reference10). MDT, multidisciplinary team.
Best practice in family communication (adapted from reference10). MDT, multidisciplinary team.
Although conflict surrounding end-of-life discussions and decisions may frequently occur for a variety of reasons, there are several mechanisms available to protect, support, and guide clinicians when faced with conflict. The use of specific pro forma documents to detail ceilings of treatment and the rationale behind these decisions helps to provide consistency and transparency in end-of-life decision-making. Clear and detailed documentation of all discussions surrounding end–of-life decisions is paramount in such situations. There are also a number of independent bodies—such as trained communicators, hospital legal services, and medical ethics groups—that are available to support and advise clinicians making end-of-life decisions.
Treatment withdrawal and end-of-life care
The actual process of treatment withdrawal on the ICU is subject to great variability, with a recent review concluding that there is ‘no single, universally accepted technical approach’.15 This is in part likely to reflect the broad clinical spectrum of patients undergoing treatment withdrawal and transition to end-of-life care. Recent international guidelines provide an excellent overview for the treatment withdrawal process, providing comprehensive guidance beginning with the discussion of treatment withdrawal through to the aftercare of bereaved relatives.16 Although not specific to critical care, there are NICE Guidelines17 and a recently published NICE Quality Standard18 relating to ‘care of dying adults in the last few days of life’, which are a very useful resource for any clinicians dealing with end-of-life care.
Preparing for treatment withdrawal
Patients and family members should be fully informed about the withdrawal process, including the physiological and physical changes that are likely to occur. Access to appropriate spiritual care—including specific cultural or religious rituals—should be facilitated where possible. Ideally, the patient should be moved to a side room and family members allowed to stay with the patient throughout the treatment withdrawal process.
Assessment of patient distress
Pain, agitation, respiratory distress, and delirium should all be assessed in patients in whom treatment has been withdrawn using validated scoring systems (e.g. the Behavioural Pain Score or the Ramsey Agitation Sedation Scale).
Pharmacological management of patient distress
The goal of pharmacological management should be the relief of current distressing symptoms rather than oversedation, with clear prescribing indications for each drug class used.
If a patient is already comfortable on a stable dose of opiates, this may be continued during the treatment withdrawal process. All drugs should be titrated to clinical effect. Continued discomfort in a patient on an opiate infusion will often respond to a bolus dose. Should a patient require more than two boluses in an hour, increasing the infusion rate to achieve symptom control should be considered or changing to another drug. For very agitated patients, haloperidol can be added to midazolam.
Discontinuation of treatment and monitoring
Best practice suggests that each individual ICU should develop standard protocols for the withdrawal of life-sustaining treatments and mechanical ventilation.16 Ideally, all non-comfort medications should be stopped and supplemental oxygen only used if it aids patient comfort. The pace of treatment withdrawal should be unique to each patient. Often vasopressors and inotropes are stopped first, followed by a stepwise reduction in ventilatory support with extubation to air being the preferred end point. After each sequential reduction in support, the patient should be assessed for signs of distressing symptoms and treated accordingly before the next stepwise reduction. Monitor alarms should be silenced as a minimum, with consideration given to removal of all monitoring.
Ongoing family/ICU care
The ICU MDT should be educated on acute bereavement support. Grieving families should also be offered ongoing referrals to community bereavement services, and every ICU should ideally have a list of suitable resources that the family can access for support during and after the period of treatment withdrawal. If requested, the family should be offered a future appointment to return to the ICU and debrief about the withdrawal process with a member of the ICU MDT. Formal debrief sessions should also be available for members of the ICU MDT after particularly difficult or emotionally charged cases.
The role of the specialist palliative care team
The World Health Organization definition of palliative care is ‘an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification, impeccable assessment and treatment of pain and other physical, psychosocial and spiritual distress’.19 The specialist palliative care team is therefore a valuable resource in the management of terminally ill patients in critical care. Particular areas of expertise that can be integrated into the critical care management of the dying patient include:20
Help with treatment withdrawal decisions
Assessment and management of difficult symptomatology
Support for critical care teams during the transition to ward-suitable drug regimes
Discussion regarding the preferred place of care with the patient or family, with the ability to facilitate admission to specialist palliative care units or even home if appropriate
Maintaining continuity of care after discharge from critical care
Ongoing support for both patient and family until either death or hospital discharge, with appropriate handover to community services.
Currently, hospital palliative care teams are generally contacted after the decision to withdraw treatment has been made, leading to a very sequential model of care. Future models of care may involve a more integrated joint working model between critical care and palliative care, allowing early identification of patients who may benefit from specialist palliative input, allowing a more patient-centred approach at the end of life.21
Conclusion
Treatment withdrawal and end-of-life care on the ICU will always be a challenging area of ICU practice requiring an individualized approach to each patient. This review has explored the ethical concepts used to guide treatment withdrawal and highlighted best practice in communication and the process of treatment withdrawal. Palliative care teams should be contacted early, as they bring considerable expertise to the process, and every ICU should aim to develop some standardized guidelines to ensure best practise is maintained.
Declaration of interest
None declared.
MCQs
The associated MCQs (to support CME/CPD activity) can be accessed at http://www.oxforde-learning.com/journals/ by subscribers to BJA Education.
