Typical illness trajectories for people with progressive chronic illness [7]
The Gold Standards Framework [8] has produced guidelines to support accurate identification of end of life in the population, and this includes specific disease-related criteria. This starts with the three triggers followed by the specific clinical indicators for dementia shown in Table 25.1. Much of the information below can be obtained by getting a good collateral history from family or carers.
Table 25.1
The Gold Standards Framework specific clinical indicator for dementia
1. The surprise question: ‘Would you be surprised if this patient were to die in the next few months, weeks, days?’ 2. General indicators of decline—deterioration, increasing need or choice for no further active care 3. Specific clinical indicators related to certain conditions | |
There are many underlying conditions which may lead to degrees of dementia, and these should be taken into account. Triggers to consider that indicate that someone is entering a later stage are | |
• Unable to walk without assistance • Urinary and faecal incontinence • No consistently meaningful conversation • Unable to do activities of daily living (ADL) • Barthel score <3 | Plus any of the following: • Weight loss • Urinary tract Infection • Severe pressures sores—stage three or four • Recurrent fever • Reduced oral intake • Aspiration pneumonia |
Considering these factors alongside the clinical presentation of the patient will help the clinician to identify whether the patient is approaching the end of life. However, it is vitally important for the ED clinician to be aware of the need for caution when using this tool.
Patients with dementia will often have a catastrophic decline in function and cognition when they are ill and might present as a picture of much more advanced dementia than they actually have. The presence of delirium will also obfuscate clinical findings around the person’s dementia. This can misdirect clinical assessments and result in clinicians mistaking acute illness for end of life. The clinician must be aware of this and rely on the collateral history from family and carers which also considers the person’s baseline before he/she was acutely ill.
25.3 Making a Decision
An unwell patient with advanced dementia will be unlikely to have capacity to make a decision about treatment options at this point. Therefore, clinical decision-making for patients with dementia will almost always be done in the person’s best interests according to the Mental Capacity Act [9] (see Chap. 13). Exceptions to this will be if the person has an advance directive or a lasting power of attorney present.
Although advance decisions can be oral or in writing, an advance refusal will only apply to life-sustaining treatment where it is in writing, is signed and witnessed and contains a statement that it is to apply even where life is at risk. Advance decisions cannot be used to refuse basic care, which includes warmth, shelter and hygiene measures to maintain body cleanliness. This also includes the offer of oral food and water but not artificial nutrition and hydration. In an emergency or where there is doubt about the existence or validity of an advance decision, doctors can provide treatment that is immediately necessary to stabilise or to prevent a deterioration in the patient until the existence, and the validity and applicability, of the advance decision can be established.
BMA 2008 [10]
It is important to remember that decisions to initiate treatments (including resuscitation) always lie with the clinician and that an advance directive cannot force a clinician to initiate treatment against his/her judgement.
25.4 Transferring the Patient
A decision will need to be made whether to transfer the patient into an inpatient area. If the patient is likely to die within an hour or two, a preferable option would be to transfer to a side room in the immediate vicinity. The upheaval of a ward admission at this point can be distressing and also result in families/carers missing the opportunity to spend time with the patient.
If the clinician is aware that the person has expressed a wish to die at home, a fast-track discharge process should be initiated as soon as possible. Initiating this at the point of admission optimises the chance that the patient will get home in time to die even if it means that the patient will have to spend a short time in an inpatient bed first.
25.5 Communicating the Plan
Once the clinician has decided on a course of action for the patient, it is vitally important to clearly communicate this to the family/carer. Ideally the clinician will have sought the views of the family and will be able to have an open and honest conversation about the best course of action to take. The most effective way to keep the lines of communication open with this group is to ensure that the person with advanced dementia is never separated from the carer/family member whilst in the emergency department. If the clinician adheres to this basic principle, the situation experienced by Mr. J will never occur, and the family/carer will feel involved in the process throughout it.
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