End of life issues

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CHAPTER 16 END OF LIFE ISSUES

Introduction 430
Treatment limitation decisions 430
Managing withdrawal of treatment 431
Confirming death 433
Breaking bad news 434
Issuing a death certificate 434
Post-mortem examinations 435
Reporting deaths to the coroner 436
Brainstem death and organ donation 437
Non-heart beating organ donation 439
Cultural aspects of death and dying 440
Dealing with death at a personal level 443

INTRODUCTION

Mortality rates on ICUs range from 15 to 35%, depending on case mix, and are typically about 20%. In addition, significant numbers of patients die soon after leaving the ICU. The ability to deal with death and the issues surrounding it is therefore an important part of work on an ICU. The dying patient must be afforded respect and allowed to die with dignity, while relatives must also be treated sympathetically. If handled appropriately, relatives will often gain great comfort from the peaceful passing of a loved one and be grateful for all that has been done.

It is particularly important to be honest and to recognize when patients are deteriorating such that death is inevitable. Once recognized, the family can be warned and relatives from further afield given the opportunity to travel to the hospital. Decisions regarding the continuation or withdrawal of treatment should be made in a timely but unhurried manner, avoiding the need for frantic telephone calls in the middle of the night in the event of a cardiac arrest.

TREATMENT LIMITATION DECISIONS

Patients are often admitted to the ICU for a period of stabilization and assessment. Over time, however, it may become clear that the patient has no prospect of meaningful recovery. Under these circumstances, a decision may be made to withdraw treatment or limit further escalation of treatment. In this setting it is important to understand that there is no medico–legal obligation to continue treatment that is futile and, indeed, to do so could be considered as assault on the patient. Treatment limitation may take a number of forms depending on individual circumstances and local practice (see Box 16.1).

Box 16.1 Potential treatment limitation options

Not admitting patient to ICU

Admitting patient to ICU but limiting time for response to treatment

(Withdrawal of active treatment if no response)

Limiting range of treatments offered (e.g. not for dialysis / ventilation / inotropes)

Not escalating treatment in face of further deterioration (e.g. ceiling on inotropes)

Not attempting resuscitation in case of cardiac arrest

Withdrawal of active treatment

In general, decisions to limit treatment are made in conjunction with all members of the multidisciplinary team. There should usually be consensus from all clinicians and nursing staff involved with care of the patient that continuation of life-sustaining treatment is inappropriate. If there is any doubt, it is usually better to continue treatment until consensus is reached. The final decision to limit treatment, however, rests with the consultant intensivist and the referring consultant in conjunction with the patient or the patient’s representative.

Recent changes in the UK (Mental Capacity Act 2005) have helped clarify the role of the patient’s next of kin and independent advocates in decision making in such circumstances.

Independent mental capacity advocates

All decisions regarding the limitation of intensive care treatment should, wherever possible, be made in conjunction with the patient. Intensive care patients are frequently unconscious or sedated, and are therefore rarely competent to be involved in decisions regarding limitation of treatment. In the event that the patient cannot participate, the views of his next of kin should be taken into account. Rarely, neither the patient nor a relation or friend is available to take part in such a discussion. In the United Kingdom, this situation is covered by the Mental Capacity Act 2005, which came into force in 2007. This lays out a framework for the appointment of an independent mental capacity advocate (IMCA). It is the right of all patients lacking capacity to have an advocate to speak up for their interests, whether their next of kin or an IMCA. Individual hospitals have local arrangements for contacting the IMCA service and appointing and IMCA.

Documenting treatment limitation

All treatment limitation decisions and DNR orders must be clearly documented in the notes. Decisions should be reviewed regularly and reversed or revoked if the situation or condition leading to them changes.

MANAGING WITHDRAWAL OF TREATMENT

The best approach to the actual process of withdrawal of treatment will vary from case to case. From a legal point of view, there is no distinction drawn between, for example, the withdrawal of vasoactive drugs and assisted ventilation. Commonly:

image Inotropes and vasopressor agents may be discontinued.
image Artificial ventilation may be withdrawn.
image The endotracheal tube may be removed.
image The inspired oxygen concentration may be reduced.
image The patient should be kept comfortable throughout the process. (See Euthanasia below.)
image Fluids and nutrition are usually continued, as hydration is considered an important aspect of patient comfort.

image Do not use the term ‘withdrawal of care’. Care for both the patient and their relatives, continues throughout the process of withdrawal of life-sustaining treatment.

Consideration should be given as to when and where is the best place for withdrawal of treatment to occur. The process is often best managed in the intensive care unit, where staff can support the patient and relatives. Some units have developed so-called ‘tender loving care’ rooms specifically designed for this purpose. In some circumstances it may be more appropriate to transfer the patient to a general ward. Occasionally, particularly when patients are aware of their surroundings and what is happening, it may be appropriate to transfer the patient somewhere else, such as a hospice, or even home, in order that they may die in peaceful surroundings. Consideration should also be given to the timing of withdrawal of treatment in order that relatives visiting from afar may be present.

Relatives will often ask how long death will take. In general terms, the greater the level of support withdrawn, the more quickly death is likely to occur. In many patients death can be confidently predicted to occur quite quickly, while in others prediction may be more difficult. Rarely patients may even apparently improve temporarily following withdrawal. Unless it is absolutely clear that a patient will die quickly, it is best not to make predictions about the speed of death. Say that you do not know, but will be in a better position to judge once life-sustaining therapy has been withdrawn.

image The withdrawal of life-sustaining therapy such as nasogastric feeding from patients in persistent vegetative state (PVS), who do not otherwise require any form of organ support, is a complex legal issue. This would normally take place outside the ICU and is beyond the scope of this book.

Euthanasia

UK law does not allow the practice of euthanasia. Patients who are dying should not, however, be allowed to suffer needlessly. It is permissible to administer sedative or analgesic drugs to relieve patient distress, accepting that in some cases the administration of these drugs will speed up the process of death. This is known as the ‘doctrine of double effect’. Most units would prescribe benzodiazepines or opioids for this purpose and many relatives gain comfort from the fact that the dying patient is not allowed to suffer unnecessarily. It is important in this respect, however, to distinguish between the patient’s suffering and the distress of relatives or staff. It is not acceptable to administer drugs that potentially shorten life solely to ease the distress of relatives or carers.

CONFIRMING DEATH

When a patient dies, death must be confirmed by a doctor. Interestingly, there is no legally agreed definition of death in the UK (other than brainstem death); however, it is generally taken to include cessation of breathing and the absence of a heartbeat. Note the following and record findings in the medical records along with the date and time of death:

image Absence of palpable pulse. Absence of heart sounds.
image Absence of respiratory effort (disconnect ventilator). Absence of breath sounds.
image Pupils are fixed and dilated.

image Confirming death in severely hypothermic patients (e.g. following cold water immersion) is very difficult. Remember ‘patients should not be declared dead until they are warm and dead’. This may require lengthy attempts at resuscitation and rewarming. If in doubt, seek senior help. (See Hypothermia, p. 224.)

Who to inform

Once death is confirmed, you must make sure that the relatives have been informed (see below). You should also inform the people listed below, although this can often wait until the next morning if the patient has died out of hours; actions will depend upon the circumstances and, in particular, whether or not the death was expected:

image Referring clinician(s).
image Consultant in charge of intensive care.
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