It would be good if it was clear to carers sooner whether a client with dementia has entered the terminal phase, says doctor of geriatric medicine and consultant palliative care and dementia Marijke Tonino: ‘That way, unnecessary suffering is prevented.’
Is palliative care in people with dementia different from “normal” palliative care?
‘It is different in that people with dementia are extra vulnerable and cannot indicate what they need properly. As a result, you have to be even more alert with this target group. For example, for signs of physical discomfort such as pain.’
When does the palliative phase start for someone with dementia?
‘The palliative phase starts as soon as the diagnosis of dementia is made. The person will die of dementia, or of a complication thereof. From the moment your client is palliative, you, as a carer, go through the four domains in your observations if you identify changes in your client’s behavior.’
What kind of change?
‘This can be anything: restless behaviour, yelling, demanding attention, or being very quiet and withdrawn… When you notice these kinds of changes, there is usually a cause. The four domains you check are: the physical, psychological, social and spiritual domain.
The change in behavior can have a physical cause, such as pain, or if someone has a urinary tract infection, for example. Someone can also feel uncomfortable with problems in the psychological domain, for example that someone is anxious or gloomy. But it can also be that someone is sad that he sees little of his children; the social domain.’
What cause can be in the spiritual realm?
‘A person can then be uncomfortable because he is wrestling with life questions or fears that arise from what may have been said in the past in church – and thus be afraid of going to hell, for example. It is also important to keep a sharp eye on which stage of dementia a person is in.’
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Which phases of dementia do you distinguish?
The first stage is the ‘threatened me’, the second the ‘lost me’, the third the ‘hidden me’ and the last the ‘sunken me’. Each phase requires a different adapted approach and this gives carers something to hold on to. Nevertheless, you continue to observe your client closely to check whether someone is still in the phase you thought.’
Why is it important to distinguish these stages of dementia?
‘Because it indicates what someone still understands and can indicate themselves. As a doctor, it helps me to understand clients as well as possible: what do they want to tell me with their behaviour? Finally, it is important to know when the palliative phase changes into the terminal phase.’
How do you know if someone is progressing to the terminal stage?
‘There can be various indications for this: someone is no longer able to get out of bed and increasingly too weak to stand and walk on their own, can no longer eat or drink properly, or does not tolerate food well. But here too you have to be alert: does someone refuse to eat because he is progressing further and further into the terminal phase? Do his teeth hurt, or does he not like the food? So you can’t say by default: I see this, so someone is terminal. Incidentally, the different phases surrounding the end of life are often confused.’
Can you sketch these one more time?
‘The palliative phase applies from the moment a person knows that he is terminally ill. The terminal phase is the last phase where a person shows increasing weakness and often becomes bedridden. Usually a person has a maximum of a few months to live. Determining terminality is often an entry criterion for, for example, hospice care. That is a statement in which the maximum life expectancy is only two to three months. The very last part is the dying phase; then there is no intake anymore and someone can also be increasingly drowsy. A person then has a maximum of one or two weeks to live. Palliative sedation is only possible during the dying phase, not before.’
What are indications for the start of the terminal phase?
‘Increasing weakness, wanting to sleep more, and you see a certain emptiness in the look. Someone with dementia can also become grumpy, saying things like: “I don’t need it anymore”. But here too you have to stay alert: maybe someone is depressed? So check this out: do a depression check, and a thyroid check. Those are things that can be remedied and that can make someone more comfortable.’
Why is it so important to know if the terminal phase has entered?
‘Because as a doctor I adjust my policy to this, and the carers care. We look at what is meaningful and of added value for the client. So in the palliative phase it may very well be that I send someone in for a broken hip. But in the terminal phase, I don’t.
In this phase, as a carer, you let someone lie comfortably in bed, if he wants to stay in it all day. That can take a while: keeping mobility in order is a high goal. You have to consciously let go of that at such a moment. This prevents unnecessary suffering. You will complete this phase, which you can also see in the medication, for example.’
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What happens with that?
‘It is no longer important that someone gets all the vitamins and minerals. You only give medication that provides quality well-being, and not for the longer term. For example, statins can be eliminated very quickly in a terminal phase. These have no added value in the longer term, but can cause unpleasant side effects, such as muscle pain in the legs.
You can also usually reduce drugs against diabetes, or give them less strictly according to protocol. Because someone eats less, so falls into a hypo faster if you don’t adjust the schedule. Medication against high blood pressure can usually also be reduced.’
What do you do with food and drink?
‘This can also be difficult, because people with dementia cannot indicate what they want, and that becomes more complicated in the terminal phase. If family insists that someone is still given food and drink, carers tend to go along with this. Also from their own perspective: it is difficult to stop giving someone food and drink. But you usually don’t help the client with it.
Very occasionally I have to forbid carers to give anything, because the body cannot tolerate it. Sometimes you see that the client suddenly improves after a few days. Because the body no longer has to process that enormous mountain of energy in the stomach.’
Who decides that feeding and drinking is no longer necessary?
‘Usually the client himself, but if he or she can no longer indicate it properly, you always do this in consultation with a doctor. It is important that you give a good explanation to relatives: tell the client that this does not bother the client, sometimes on the contrary. If the food is no longer processed properly, it can cause nausea and even vomiting.
Someone does not die because he stops eating and drinking, someone stops eating and drinking because he is dying and is therefore in the dying phase.’
How do you identify whether someone with dementia does need food or drink on their deathbed?
‘You can then see how he reacts to easily digestible and easily digestible food. And offer little things. How do you see if someone does not tolerate this? General signs are burping, gagging, food coming back, resisting, wanting to take a bite and then immediately refusing, but it also depends on the client’s personality how he refuses.’
Who determines whether the terminal phase has been entered?
‘You do that together: doctor and care. Everyone has their own observations and you share them with each other. Hitting such a picket post provides clarity for everyone, so that you can ultimately provide the best possible care to the client, right up to the end.
What remains important for all phases is good cooperation; as a carer you are close to the client and often you know him best. You are the first to see the changes and especially if the client can no longer indicate it properly, this is essential to get and keep someone comfortable, because that is what palliative care is aimed at.’
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