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.

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).

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.

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:

Inotropes and vasopressor agents may be discontinued.

Artificial ventilation may be withdrawn.

The endotracheal tube may be removed.

The inspired oxygen concentration may be reduced.

The patient should be kept comfortable throughout the process. (See Euthanasia below.)

Fluids and nutrition are usually continued, as hydration is considered an important aspect of patient comfort.

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.

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:

Absence of palpable pulse. Absence of heart sounds.

Absence of respiratory effort (disconnect ventilator). Absence of breath sounds.

Pupils are fixed and dilated.

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:

Referring clinician(s).

Consultant in charge of intensive care.

The patient’s general practitioner. (This is especially important. It fosters good relations between the hospital and the community and allows the GP an opportunity to offer counselling and support to the relatives.)

Coroner’s officer, if appropriate (see below).

This is never an easy task, particularly if the death has occurred unexpectedly or if the patient was very young. If the relatives are not present at the time of the death they will generally be called by a senior nurse and asked to come into the hospital. Try to avoid talking on the telephone if at all possible.

When relatives are present or when they arrive, you should speak to them in a quiet side room. It is worth checking that all relevant members of the family are present, as different branches of families may not communicate.

Follow the basic guidelines on talking to relatives. (See Talking to relatives, p. 28.)

Be honest but not brutal!

Avoid euphemisms such as ‘he slipped away’ as these may not be interpreted in the way you expect. Clearly say that the patient has died.

Relatives often find it helpful to know that their loved one was not in any pain or distress, if this is true.

The stages of bereavement include denial, anger and gradual acceptance. Any of these emotions may be expressed. It is not uncommon for the initial response to take the form of anger, particularly if relatives believe that things have gone badly for their loved one. Such anger often subsides over time as the realities of the situation become apparent. Sympathetic handling, honesty and compassion with relatives will avoid many later complaints.

Many units now offer relatives the chance to return at a later date to revisit the sequence of events surrounding a patient’s death and to ask any questions they may have. This is a valuable part of the grieving process for relatives. Formal grief counselling may benefit some relatives.

The death certificate asks you to give information about the cause of death. You can issue a death certificate if:

You have attended to the patient during the last illness, and you have seen the patient alive within 14 days of the death (28 days in Scotland and Northern Ireland).

You are satisfied that the death was due to natural causes (see below).

You are reasonably sure of the cause of death.

There is no specific requirement to inform the coroner.

If you can issue a death certificate, then complete the relevant sections. Once complete, the death certificate is then given to the patient’s next of kin so that they can register the death. In many hospitals a bereavement liaison officer will handle these matters. Ensure that you fill in the form as accurately as possible, as it is very distressing for relatives if the registrar of births, marriages and deaths rejects the certificate:

Write legibly. If your handwriting is difficult to read, it is best to print the details.

Do not use terms such as heart failure as a sole cause of death. (Strictly this is a mode of death rather than a cause.) If used, these terms must be backed up by an underlying diagnosis, e.g. ischaemic heart disease.

Print your name next to your signature so that you can be easily identified in case of difficulty.

Where the cause of death is known but information from a post-mortem examination would be of interest, you may ask the family for permission to perform a hospital post-mortem. Where a death occurs after major surgery, most surgeons will request a post-mortem. This may help clarify the events leading up to the death. There is space on the death certificate to record that more information may subsequently be available from a post-mortem. In this case the registrar’s office will write to you once the result of the post-mortem is available.

If you are unable to issue a death certificate, you must report the death to the coroner (Procurator Fiscal in Scotland). The commoner indications for reporting a death to the coroner are given in Box 16.2. If in doubt, ask.

If in any doubt, you should discuss the death with the coroner. You will generally deal with the coroner’s officer. There is usually a specially trained policemen with variable degrees of medical knowledge, but is nevertheless a useful source of advice. When speaking to the coroner’s officer, you will need the following information:

deceased patient’s name, date of birth, address

address and telephone number of next of kin and GP

brief summary of the patient’s last illness, including date of admission, diagnosis, operations, complications, and date and time of death

reason for reporting death

suggested cause of death if prepared to offer a death certificate.

If the cause of death is not suspicious, or unnatural, the coroner may give permission for you to issue a death certificate (initial box ‘A’ on the reverse of the death certificate). In this case, the cause of death cited on the form is agreed with the coroner’s officer, who then issues a covering slip to the registrar’s office.

If the cause of death is unknown, or is suspicious or unnatural, then the coroner’s officer will take over. Generally a coroner’s post-mortem will be performed, and if necessary an inquest convened.

The brainstem is responsible for the maintenance of life-sustaining functions within the body, in particular the maintenance and adequacy of respiration. With the advent of modern intensive care, it is possible for patients in whom brainstem death has occurred to be on a ventilator and still have a heart beat and pulse. These patients are not capable of sustaining life on their own. Brainstem death is therefore now a legally accepted definition of death, the diagnosis of which is governed by strict guidelines and protocols. Patients who are brainstem dead and on a ventilator may be suitable for organ donation. (See Brainstem death, p. 297.)

Consent for organ donation

Patients who are listed on the organ donor register can be considered to have made an advanced directive and their wishes should, where appropriate, be complied with. Keep the relatives informed. If patients are not on the donor register, then consent to the organ donation process can be obtained from the next of kin.

The most appropriate time to approach the subject of organ donation will depend upon the individual circumstances of the case. Relatives will often discuss the subject informally with staff, and it is reasonable to explain about the possibility of donation at any time once the possibility of brainstem death is raised. However, the diagnosis of brainstem death and the request for organ donation are separate issues. You certainly should not make any formal approach until brainstem death has been confirmed. Transplant coordinators are willing to come and speak to relatives about donation if required.

Not all relatives will give consent to organ donation; some religious groups in particular find it difficult. You must accept their wishes, no matter what your own views are. (A code of practice for the diagnosis and confirmation of death. Academy of Medical Royal Colleges 2008. http://www.aomrc.org.uk/aomrc/admin/reports/docs/DofD-final.pdf.)

You must also seek the coroner’s permission for organ donation from those patients whose death would normally require referral to the coroner. (See Reporting deaths to the coroner, p. 436).

Practicalities of donor management

Transplant surgeons are accepting organs (particularly kidneys) from more unstable and elderly patients than in the past, and in addition there is increasing utilization of tissues such as bone, skin and heart valves. If in doubt about what can be used, ask the transplant coordinator. Each region has one or more transplant coordinators who will liaise between the organ retrieval teams and the referring hospital. They will also provide advice on the management of the donor.

The management of a potential brainstem dead organ donor is essentially similar to that of other ICU patients, (particularly those with brain injury). The aim is optimization of physiological parameters, particularly oxygen delivery, and avoidance of secondary physiological insults to organ systems.

Problems after brainstem death include:

Haemodynamic disturbances – with low CO and / or SVR. Oxygen uptake and CO₂, production may be abnormally low. Large volumes of fluid may be required to maintain adequate filling pressures and inotropes / vasopressors are frequently necessary to maintain adequate perfusion pressures. Optimization of the cardiovascular system may require invasive monitoring.

Poor gas exchange is common (e.g. neurogenic pulmonary oedema), and frequently lungs are unsuitable for transplantation. Ventilation should be optimized.

Pituitary function is impaired. Diabetes insipidus is common: use DDAVP (0.5–1 μg, i.v.) as necessary to reduce urine output to sensible volumes. (See Diabetes insipidus, p. 286.) There is no evidence that donor organ function is improved by the administration of steroids or thyroid hormone.

Temperature regulation is lost. Use warmed IV fluids, inspired gases, and warm air blankets to maintain normothermia.

Special investigations

A number of investigations need to be carried out prior to organ donation. These are shown in Box 16.3. There are increasing concerns about the risks of donor transmitted infection and malignancy. The transplant coordinator will give advice, as this is a changing area, particularly in relation to hepatitis serology.

Box 16.3 Tests prior to organ donation

Tissue typing

HIV

Hepatitis screening

U&Es

Glucose

LFTs & amylase

ECG

CXR

Height, weight and girth measurements

The shortage of donor organs from cadaveric, heart beating (brainstem dead) donors has led to renewed interest in the use of non-heart beating (asystolic) donors. Important issues are timing and definition of death, and the time elapsed between death and organ procurement.

In general, organs may be suitable for organ donation after asystole, if the time interval between death and retrieval is short, so that irretrievable damage to the organs does not occur. Five categories of patients who might be suitable have been described. These are shown in Table 16.1.

TABLE 16.1 Maastricht categories for non-heart beating donors

* Maastricht criteria 1995. Category 5 added 2003.

Typically patients on ICU are in category 3. The patient does not fulfill criteria for brainstem death, but death is inevitable, withdrawal of treatment is planned, and the family wish their relative to become an organ donor. Following discussion and consent from relatives, there is a planned withdrawal of supportive treatment. Following asystole, there is a ‘stand-off’ period during which relatives may ‘say goodbye’ to their loved one, after which the organs are cold perfused in situ by cannulation of the femoral artery and vein before being removed for transplant.

Different groups have different ways of dealing with death. This may clash with your own religious or cultural beliefs. Some groups may have large extended families and publicly display their grief. A number of religious groups are unhappy about post-mortem examinations and some prefer to remove the body from the hospital as soon as possible after death. This can sometimes be arranged. You should respect the views of others.

Table 16.2 gives a brief guide to the beliefs and practices of the more common religious groups. The information has been compiled from a number of sources and every effort has been made to ensure that it accurately reflects religious and cultural beliefs. Any errors or admissions are unintentional and no offence is intended.

Routine care of the dying and last offices are appropriate unless otherwise stated.

No religious objection to post-mortem examination or organ donation unless otherwise stated.

TABLE 16.2 Beliefs and practices of common religious groups

Working on an ICU can be both very satisfying and very demanding. Doctors and other health care professionals working on the ICU, who frequently deal with dying patients and bereaved relatives, often develop robust coping mechanisms to help them deal with death on a day-to-day basis. There are times, however, when even the most seasoned professional will find it hard to deal with a particular patient’s death or a particular set of circumstances. The effects may even be felt some considerable time after the event and staff may even feel guilty about their feelings. It is important at these times to seek support.

If you find yourself affected by anything you come across on intensive care, do not keep it to yourself. Discuss it with friends, colleagues or senior medical or nursing staff, or make use of the support groups and available counselling services.