Decision-making for a person with dementia in hospital with coronavirus

Some people with dementia who have coronavirus will go into hospital for treatment. When this happens, decisions about their care will need to be made – sometimes quite quickly and over the phone. Our advice includes topics that you might find upsetting, but we hope it will help you prepare for these discussions.

Hospital doctors will make decisions about the person’s care by looking at their individual circumstances. They will weigh up the risks, benefits and likely outcomes of each treatment option, and consider the person’s wishes and preferences. They will involve the person in this as much as they can as well as you – as someone close to them.

This is why it’s helpful to have a conversation with the person beforehand (planning ahead) if you can. You will then know their wishes and preferences, in case they are not well enough to communicate them at the time.

Treatment plans

The medical team will draw up or review an existing ‘treatment escalation plan’ (or equivalent) once the person is admitted to hospital. This sets out what will happen if the person’s condition worsens. For example, it will state whether they will be admitted to critical care or have cardiopulmonary resuscitation (CPR) – although that may also be recorded on a separate form.

The treatment plan also records whether the person has the ability to make decisions (mental capacity) about their care. A diagnosis of dementia by itself does not mean that the person lacks capacity, but as a person’s dementia progresses they will lose capacity to take on and understand the information they need to decide about their care.

Completing a treatment plan is extremely helpful. It encourages medical staff, the person (as far as possible) and those close to them to discuss difficult but important issues, including possibly end-of-life care.

If the person does get very seriously ill and the decision is for them not to have critical care, they will be given end-of life care on a ward. Staff will control their symptoms as best they can and support the person to die free from pain, in comfort and with dignity. You should be allowed to visit in these circumstances.

How decisions are made

The person may have already made decisions about life-sustaining treatments, such as not having mechanical ventilation or CPR. Their choices may be set out in the form of an advance decision (sometimes called a ‘living will’) or through appointing a health and welfare lasting power of attorney (LPA). The attorney may be you, another family member or someone else.

Doctors must follow a valid and applicable advance decision or a decision that you are permitted to make if you are an attorney for health and welfare. Although it is not legally binding, doctors must also take an advance statement into account when they make decisions.

No decisions about treatment must ever be based simply on the person’s age or dementia diagnosis. Doctors must look at the person’s current condition and underlying health, and whether treatment options are likely to lead to outcomes that the person wishes.

But no one has the right to demand medical care – including CPR and mechanical ventilation. If a doctor believes that the person’s chances of recovery with a good outcome are very low they may decide not to follow such treatment.

Communication about care

Hospital staff are very busy, but they should always try to involve the person with dementia as much as possible, and those close to them, in discussions about their care.

This should happen whether or not you are an attorney or have had advance care conversations with the person. It may be done by phone or video call. If the person has no one to support them, the hospital will involve an independent mental capacity advocate.

Unless this has already happened, the medical team should sensitively discuss a possible ‘do not attempt cardiopulmonary resuscitation’ decision (DNACPR, sometimes called DNAR or DNR). This should be done with any attorney, family/carers and the person with dementia – if this can happen. A DNACPR decision means that, if the person’s heart or breathing stops suddenly, the medical team will allow them to die naturally rather than trying to resuscitate them.

A DNACPR will apply if the person has asked for this, for example via an advance decision or by discussions with an attorney. Or it might be that the doctor now believes that resuscitation in these circumstances has only a very small chance of a good outcome. This is a clinical decision based on the person’s current and pre-existing health conditions and knowing the likely outcome. The medical team will explain this to you carefully.

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