2 April 2020
The best time to talk is now
Warning: this blog discusses end of life. We know it can be a sensitive subject, so if you’re not ready for it now, skip reading it. If you need to talk, our friends at the charity Marie Curie have a helpline to give you support.
Noel Baxter, a GP specialising in lung problems, explains why talking to your family about your future care is important in the current situation
Now, due to coronavirus, you might be starting a conversation because you’re considered vulnerable. You may have been sent a letter from the NHS advising you how to protect yourself, stay well and get help. If you’re one of the people receiving the letter, you might want to call you GP as a result, or discuss with your family what your wishes are if you get very unwell.
We’re learning a lot from countries with excellent health systems like Italy about what is happening and the difficult decisions needing to be made. In normal times, many people with respiratory illnesses can recover from a flare-up caused by a virus with oxygen and non-invasive ventilation methods (like a mask or tube under the nose).
But it seems that it’s now likely more people will need oxygen from a ventilator through a tube in their windpipe (called intubation) when they get COVID-19. This help with breathing can be life-saving, but unfortunately not for everyone.
Specialists are having to make harsh decisions
Taking in oxygen this way is more invasive and some people with lung conditions might have already discussed that they don’t want it. I know that some people don’t understand what the implications are. With COVID-19, specialists in intensive care are finding it harder than usual to support people to recover from this more invasive type of oxygen. Getting people off ventilation and removing the tubing is already known to be difficult. With COVID-19, it seems to be so difficult that specialists are having to make harsh decisions about who they even attempt intubation with.
I think most people with a lung condition will have thought about end of life care, but not everyone will have had a chance to talk about it. All the evidence supports the fact that people want to talk about it and feel better once they have.
The best time to talk is now
If you think you’re at risk, the best time to talk with your health professional is now. The next best is as soon as possible after you think you are getting the first symptoms. As well as speaking with your professional, talk it through with your friends and relatives. Your health professional will want to know that they have understood your wishes too.
Talking it through may also help you ask the right questions. It might be hard for your family to start this conversation. If you know you are at high risk, then explicitly giving them permission to talk to you can be a big relief for them.
We all need to talk about it
We’re now in a situation where even people without underlying health conditions should be having conversations with people close to them about what to do should the worst happen. Sadly, COVID-19 has killed people who were otherwise considered healthy (even though at much lower proportions). Most people with underlying and no underlying conditions will get through this, but we all need to talk about it.
One of the most difficult things right now for people who are at high risk from COVID-19, and their loved ones, is that it’s increasingly unlikely that they’ll be able to be with those closest to them if they get seriously unwell.
Being with people you know and are close to is incredibly important at the end of life. Symptom relief care - or palliative care as it’s known - can be provided for in your home or a hospice. We know this can transform an end of life experience.
You will not be left alone
Your GP and their team will know you well and may have known your family for many years. They are there to support those around you, and anyone needing this support at home. They will work closely with community nurses and other specialists to make being at home safe and comfortable.
Right now, GPs, community teams and hospitals are drawing up plans together to make sure that you can be safely cared for in different environments according to your health status at any time and your wishes. This includes planned check-up telephone or video calls from your GP for people who have already presented with possible COVID-19 symptoms to discuss how you are progressing. Home visits will still happen if necessary. It’s important to say that there’s no scenario where a you’d be left alone if your COVID-19 symptoms became severe and life threatening.
Keep up-to-date with the latest coronavirus information by checking out our COVID-19 information hub.
End of life
There will come a time when you need to think about the last years, months, weeks, or days of life. This information is for people with a long-term lung condition who are coming to the end of their life. It’s also for those who are close to them, including carers, family, and friends.