Around 1% of the population in economically developed countries die each year. Some deaths are unexpected but the majority are the result of one or more advanced progressive illnesses. It is important to identify whether an acute deterioration in the context of chronic disease is reversible, or represents an inevitable decline and that the person will die soon. Recognising where a person is on their current illness trajectory allows pragmatic decisions to be made about what further investigations and treatments are appropriate and informs discussions with the patient and their relatives.
Assessing the dying patient
There are three broad illness trajectories ( Fig. 19.1 ):
predictable progression of a life-limiting condition with a clear terminal phase: for example, progressive cancer
fluctuating decline with intermittent, potentially life-threatening, acute exacerbations that may result in a seemingly unexpected death: for example, advanced respiratory disease or heart failure
prolonged, gradual decline, sometimes with a more acute terminal event: for example, dementia or general frailty, and some advanced neurological conditions.
Many physiological changes occur towards the end of life. General indicators of decline include:
deteriorating performance status, with the person in bed or in a chair for more than 50% of the day
unplanned, emergency hospital admissions
persistent symptoms despite optimal treatment of underlying illnesses
significant weight loss.
Some patients are close to death when they first present, or fail to improve with treatment so that it becomes clear that they will die soon. What matters is that we recognise when this person is so unwell that they could die.
To understand the patient’s situation fully and to plan appropriately, the approach to the history needs to be adapted to include background and context.
Use all available sources to determine the patient’s previous health status in addition to their presenting problems. Review referral letters, hospital records and previous discharge summaries. Check for advance directives or anticipatory care plans. Look for any record of previous discussions or decisions about cardiopulmonary resuscitation (CPR). Find out if the person has a pacemaker or any other device that will need to be removed after death, and record this clearly.
Establishing the broader context
Build up a picture of the patient’s overall health status, not just the presenting symptoms. If a family member or friend is present, they can provide valuable additional information and also support the patient. If the patient cannot provide information, contact someone who knows them such as their general practitioner. Find out what the person and their family know about their condition and what their hopes, fears and expectations of treatment are. The key questions to ask are shown in Box 19.1 .
How have you been doing recently?
What has changed?
How were you a month ago?
What do you know about your health problems?
What are you expecting to happen now/in the future?
What things are important to you that we should know about?
We hope the treatment will work but I am worried you might get more unwell. Can we talk about that?
Is there anything or anyone you are worried about?
Do you have a family member or a close friend who helps you when you are less well?
Is there someone we should speak to about your treatment and care?
It is also helpful to ask yourself the ‘surprise question’: ‘Would you be surprised if this person died in the next few months, weeks or days?’ If the answer is no, then it is time to find out what things matter most to the patient and how they and their family can best be supported during this time.
The physical examination
People may retain some awareness, even when close to death. Speak to the patient by name and to others in the room as you would when your patient is awake. Always introduce yourself and explain your role in the team. Your assessment begins with observing whether the person looks comfortable, and checking with other staff and the family. Non-verbal ways of showing concern for the person have a big impact (tone, gentle touch, gestures of kindness), for both the person and their family.
It can be difficult to decide when a person has entered the last days of life but there are signs that suggest a patient will die soon ( Fig. 19.2 ). Even when this is the situation, a focused examination looking for reversible causes of deterioration is always indicated (see the integrated examination sequence at the end of the chapter). Common potentially reversible causes of deterioration in advanced illness are shown in Box 19.2 .
Opioid toxicity or other drug toxicity or poisoning
Glucocorticoid withdrawal or a new diagnosis of adrenal insufficiency
Acute kidney injury
Hypoglycaemia or hyperglycaemia
Some patients will benefit from carefully selected tests to allow us to see if their condition is partly reversible, to guide specific palliative treatment or to clarify the prognosis.
Care in the last days of life
If the patient is likely to die soon, their care needs to be planned to anticipate problems. It is important to review a patient who is dying at least daily, and more often if they are unsettled or have complex clinical problems. If a patient deteriorates rapidly or their symptoms change, urgent assessment is required. Find out if the other people who are caring for the dying patient have any concerns and work with them to maintain the person’s comfort and dignity. Involve and support family members and close friends.
Cultural, religious and spiritual care is very important when a person is dying, at the time of death and afterwards. Always ask the person and those close to them about their wishes and what you and other staff members can do to help support them. This may include wishes about how the person is touched or cared for after death.
Communication with patients and families
Find out what the patient and their family know and what they expect. Explain what happens when a person is dying. Talk about the changes that will be seen and what they mean. Explain why the focus of treatment, monitoring and care will change to making sure the person is comfortable. Explain what to expect when the person dies and what to do if the person is at home. Most people stop breathing gradually but may take a final breath after a long pause. A brief muscle spasm may be observed at that time, so warn relatives about this.
Confirming and certifying death
The confirmation and certification of death are important to allow the legal requirements and cultural and religious traditions that happen after a person has died to be fulfilled. Some people will have decided to be organ donors. Notification of the relevant team in advance and the prompt diagnosis of death can make this possible for many of them.
In the UK death is defined as ‘the irreversible loss of the essential characteristics necessary to the existence of a living person – to be able to sense and interact with the environment and to maintain the fundamental bodily functions of respiration and circulation’.
Consciousness and respiratory and circulatory function are controlled within the brainstem. Irreversible damage to the brainstem, either after cardiorespiratory arrest or due to direct damage to the brainstem itself, always results in death.
A decision will usually have been made and documented in advance, stating that CPR will not be given because it would not work or would have a very poor outcome for this person. Occasionally, a person with one or more advanced illnesses deteriorates more rapidly than expected or a decision that CPR will not be given has not been made in advance. In those situations the professionals who are present decide if CPR should not start or should be stopped.
If you are not familiar with the patient and their recent medical history, read their records before going to see them or speaking to their family. Being aware of whether the death was sudden or expected and how the person has been during their final illness helps you to prepare for speaking with the family.
The physical examination
After the person has died, it is important for the clinical team to continue to care for them as they would any other patient. This includes speaking about the person by name to family members who are present at the time of death or while you are carrying out the examination to confirm death. Some relatives choose to remain in the room and you need to explain each part of the examination in simple terms and conduct it in a respectful and professional manner.
The person who has died should be observed for a minimum of 5 minutes to establish that irreversible cardiorespiratory arrest has occurred. This provides an opportunity for you to spend time supporting and listening to any family members who are present. After death the body cools gradually and stiffens; bowel sounds may persist for a time until the sphincters relax and the bowels and bladder empty.
The diagnosis of brainstem death must be made by at least two doctors who have been fully registered for at least 5 years. They should have experience in the assessment of brainstem function. One of the doctors must be a consultant or equivalent senior physician. The tests are performed on two occasions. The first set of tests is to diagnose brainstem death. The second set is to confirm the diagnosis. There is no minimum time required between tests; they can occur concurrently. If the tests demonstrate that brain death has occurred, then the time of death is recorded as the time of diagnosis: that is, the time at which the first set of tests was completed.
Communication with families
Communicating with family members to tell them that someone has died should be done as soon as possible. Speak to relatives in a quiet, private room and try to avoid interruptions. If the death is sudden and unexpected, this will be breaking bad news so it needs to be done clearly and sensitively. If contacting a family member by telephone to inform them of a patient’s death, it is important to decide if it is safe to do so or whether it would be better instead to contact someone such as the police and ask them to go and inform the family member in person about a sudden death. Explain what has happened and what will happen next. Offer the family time with the person who has died if they wish.
Document the place, time and date of death in the patient’s medical record. In some countries the time of death is when the person was observed to have died by those present or the person was found to have died. In other countries the time of death is when death is confirmed by a doctor, so make sure you know which time to record. Include details of who was present when the person died and what the primary and main secondary causes of death were. The cause of death should always be discussed and confirmed with a senior colleague. Some medical certificates of death require additional information such as the duration of the final illness, so make sure you are familiar with these requirements. You should also know or seek advice about when a medical certificate of death should not be issued because the death has to be reported ( Box 19.3 ).