Coronavirus: the conversation we should have with our loved ones now – leading medic
Waiting is never easy. Sometimes the period when you know that something bad is coming is almost harder than when it finally arrives.
Across the health service, there is an enormous and unprecedented effort underway to prepare for the coming surge of patients needing hospital treatment for coronavirus. Looking across to the experience in Italy, Spain and Germany, we know that there is a tsunami coming – a tidal wave of medical need that will swamp us, test us, sweep some of us away.
The analogy with a tsunami is apt because we are at the moment when the waters pull back before the great wave arrives. Some hospitals are eerily quiet; elective surgery has stopped, and some wards have been emptied. Our healthcare workers are anxiously waiting and preparing for what is coming.
Of course, many ordinary people are also waiting, not knowing exactly what lies ahead and fearing the worst. How can they, how can we – all of us – prepare?
The answer is not to panic. But nor should we ignore or downplay the seriousness of the situation. And certainly, it is not to stockpile pasta or loo paper.
One obvious and widely publicised step is to take simple practical measures to reduce the spread of the virus, to protect ourselves and our family – washing hands, reducing social contact, self-isolating if symptoms develop.
However, I am going to suggest something that is perhaps equally important. In the coming week, we need to have conversations with our loved ones about our preferences and values around treatment if we become seriously ill. That is particularly important for patients who are at highest risk from this virus. Of course, hopefully these conversations won’t end up being necessary, because we and they will avoid the virus, or have a mild illness.
These conversations are to support our families and the doctors looking after us. They are crucial for people who are at higher risk of becoming unwell with the virus, for example, those who have a chronic illness or are older. They are also relevant for those who are middle aged and otherwise healthy, since the simple fact is that some of us will become life-threateningly ill.
What I will say to my family this week
Here, modified from US surgeon Atul Gawande’s inspirational book Being Mortal, are three things that I will talk about with my family this week.
First, if you were to become seriously ill with coronavirus, what would be most important? What would be your top priority? (And your second priority, if the first isn’t possible?)
Second, what is concerning you the most about becoming seriously ill? What are you most worried about?
And, third, if you became seriously ill, what outcomes would be unacceptable to you, what would you be willing to sacrifice – and not sacrifice?
It may also be helpful as part of those conversations to talk openly about what we can and cannot expect from our healthcare system.
In the face of this crisis, doctors and nurses and healthcare teams in the NHS should and will do their utmost. Every patient will be cared for. But some treatments may have no chance of helping, they may be highly burdensome, unpleasant and invasive. Or even if they could be helpful, they simply may not be available. It is important to understand that in the coming weeks some treatments will be in critically short supply.
Treatment on trial
One basic principle that applies to many medical treatments is that when we are not sure if it is the right thing, we start it for a trial period. For example, patients might try a new medicine to see if it lowers their blood pressure, or try a cancer drug and see if it shrinks their tumour without severe side-effects. (Outside medicine, we might trial a subscription to a magazine or television channel, or a new position at work, or even trial a new relationship). After the trial period we may keep going, but sometimes we will stop.
It is going to be particularly important for patients who end up in hospital to understand the concept of a “trial period” of treatment. Treatment, whether that is medicine, or oxygen, or a breathing machine, will often be provided for a period and then reviewed. If it is working, that will be fantastic. But if the person is not getting better or is getting worse, it will be very important to recognise that and to stop the treatment.
The concept of a “trial period” is so important right now because when treatment is in short supply, the duration of treatment is directly related to how many patients can be treated. Imagine that a hospital has only ten of a particular piece of medical treatment. If patients use that equipment for two weeks each, ten people will benefit. But if they use that equipment for only one week each, 20 people will have a chance to be treated.
We can and should hope that treatments will be available for us when we need them. But we cannot take more than our fair share. If our health service has provided a “trial period” of treatment for us and the treatment isn’t working, the treatment may need to stop so that someone else can benefit from it.
These are intensely worrying times. It is hard to know what lies ahead for any of us. We should definitely hope for the best, but it is also important to have some conversations with our families now – so that we may all plan for the worst. Just in case.
Dominic Wilkinson receives funding from the Wellcome Trust.