Katie Sanderson is a doctor working with Covid-19 patients in a busy London hospital. She has written an important piece that should be read by all of us - potential patients, their families, and doctors - about the need for honesty in deciding how and where we want to die, before the moment of acutest crisis.
Words by Katie Sanderson
This week I heard from the daughter of a patient I looked after recently. When it became clear that her mother was going to die from COVID-19, she decided that she wanted to go home to die in her own bed, in the arms of her partner and children.
This family found themselves in a situation that they could not previously have imagined – at first her daughter said to me over and over again "this is not happening".
But together, they faced this situation with extraordinary bravery and resolution. Her family honoured the woman’s wish to die at home, and we discharged her with anticipatory end of life medications to manage pain and breathlessness. The brilliant local community palliative care team and district nurses were in touch with the family when they arrived home, and our patient died the next morning.
As a country, our focus now is on saving the lives that can be saved, and that is well and good. But it is also crucial that we look after the dying as well as we possibly can.
Dying is not a failing of medicine; it is an inevitable part of life, and as we all know, Covid-19 is currently a disease without a specific cure.
Management involves supporting our patients until they recover, if they recover. This means that some of our patients will die, and that is unavoidable. While we can give organ support on medical wards or in intensive care to many patients, and hope that they will recover, for some this kind of support will be invasive and burdensome, with no chance of success.
There is no should or shouldn’t about the choices that patients and their families make. But I feel strongly that all patients should have the information that they need to make those decisions.
Some patients and families will not want to discuss the possibility of death, and that is a choice that should be respected. But all patients and families deserve the option of knowing if they are going to die in the next hours or days; of knowing that there is no active medical treatment that has a realistic chance of extending their life, of being able to discuss the fact that the burden and invasiveness of available medical treatments may outweigh any potential benefits.
Death is something that we find incredibly difficult, as a medical profession and as a society. Although it will happen to us all, we remain afraid to talk about it.
In 2018 less than a quarter of those who died did so at home. I have a vivid memory of the first time one of my friend’s parents died – their family was woefully underprepared. Despite the fact that their father had been terminally ill for some years, and that it was clear that no more treatment was available, my friend’s family had no idea that death was imminent, no idea how he would die, and no idea what to do after death.
After he died his children resorted to combing through the telephone directory in the early hours of the morning (in vain) to try to work out what to do next.
In hospitals we use terms like "at risk of deteriorating", and "increasing oxygen requirement", which can mask the reality of someone’s life coming to an end. But there is no chance for a patient to choose how and where they die – one of the most important decisions anybody can make – if we have not been honest with them about the fact that they are dying.
So this is a plea to doctors – tell your patients if you think they are going to die, so that they can have the best death possible for them. That may be a death in a hospital, looked after by our wonderful nursing staff, who will do their best to ensure that they are comfortable and at peace.
But it may also be a death at home, in their own bed, surrounded by the people and things they love, with access to appropriate medications and staff who will help to manage any distressing symptoms that occur as death approaches. I have talked to many families in the last week about death, about what might make the dying stage of life for their loved one least traumatic in these very difficult times.
For me, I think missing the opportunity to ask my parents their wishes, and then not being able to do everything possible to honour those wishes, would be the most traumatic thing of all.
Huge strides are being made to ensure that there is good provision for patients who wish to die at home. Wishes can be recorded using electronic coordination systems, accessible to community staff and ambulance services (Coordinate My Care, for example, in London).
Anyone can make a will and talk to their family about what they would want to happen if they were to become so unwell that they might die. Those to whom it is relevant can discuss these thoughts with their GP, in a process we call advanced care planning, anticipating the possibility that they may lose the ability to make such decisions or to communicate them.
Hospitals, GPs and community palliative care teams can arrange for end of life medication to be made available in patients’ homes, and give advice on how and when to give it. District nurses can help to administer medications. These services are stretched, but working in them are a wealth of brilliant and compassionate staff who care deeply about enabling patients to die peacefully at home, if that is what they want.
To the public – please think about whether this might be relevant to you or to anyone you are close to. These conversations are difficult, but they are crucial, now more than ever. The likelihood is that your loved one will have thought about this and the ability to discuss their feelings on the matter may well be a huge relief.
To healthcare professionals – however uncomfortable you may feel, and however much you want to give hope to your patients – make sure that you give them opportunity to choose where to die – if death is unavoidable – and who they are with. This is not something we traditionally value very highly, but enabling patients to die well is as important as preserving life.
Below are some useful online resources that offer practical help if you want to make an advance care plan - what many call a living will - that would guide doctors about your preferences at the end of life.
- NHS England offers this resource
- There is also an Advance Care Plan website produced by Byw Nawr in both Welsh and English as well as its award-winning sibling website
- Then there are also resources such as Dying Matters
- This from Willen Hospice talks about frail relatives
- Finally there is the #BeforeTheirTime campaign which seeks to recognise that Covid-19 may prevent us saying goodbye to those we love most
Coronavirus: Everything you need to know