In recent years, I’ve been thinking about the right way to die, having been with my late wife Sian Busby when she was in great pain from cancer at the end of her life, and been chairman of Hospice UK, the charity which campaigns – among other things – to improve end-of-life care.
In normal times, few of us want to dwell on better or worse ways to die. But these are not normal times. The coronavirus crisis means we have to confront perhaps the hardest question any of us will ever face.
For ourselves and for those we love most dearly, if a doctor told us that our chances of survival were slim, would we prefer to be kept alive possibly for just a few days more in a painful and humiliating way, on an incubator, or would we rather die at home, with those we love?
Doctors tell me they are presenting that choice to very sick people and their families in record numbers. And many more still will have to make this most distressing of decisions.
I know this will alarm and even outrage many of you. But in the short time we have before this epidemic reaches its peak, it really matters that we think privately about all this, and debate it publicly. It is not macabre. It is the essence of being human.
Which is why below I am posting here a thoughtful piece by an old friend, Annabel, about how she and her sister have resolved this question for themselves and for their mother, who suffers from dementia and is in a care home. Her piece is upsetting but important.
Thoughts on mortality, by Annabel S
My mother is 82. She is a much-loved mother and grandmother.
However, she is also severely demented, doubly incontinent and lives in a care home. She is very different from the busy, sociable mother of seven or so years ago, but she is happy and has a good quality of life. So good that, when asked by the home in the autumn if we would like her to have a flu jab, we said yes.
The care home’s approach cannot be faulted. They have shut to visitors, arranged Skype sessions for families, regularly posted photos of the activities going on Facebook and sent out an anticipatory care planning questionnaire. The questionnaire is familiar territory for my sisters and me; my mother gave each of us a lasting power of attorney for health and welfare in 2012. A year later we first thought seriously about the possibility of her death when she had a triple heart bypass.
This lasting power of attorney allows us to make decisions for our mother about life-sustaining treatment. A couple of years later, her GP asked if she wanted to put in place a DNR order (do not resuscitate). She did not have the capacity to make the decision, so it fell to us. We became aware while thinking about it that academic research suggests that putting in place a DNR order may result (among other things) in inappropriate withholding of other treatments.
So we designed our own advance treatment plan, based on a more recent initiative called ReSPECT (Recommended Summary Plan for Emergency Care and Treatment) which had not, at that point, been rolled out by my mother’s health authority and, indeed, has still not been rolled out countrywide. Why? It should be. The key point about it is that it is person-centred.
This is what we said: ‘In choosing how to treat [our mother] in an emergency, we would expect medical staff to prioritise her comfort and to focus on symptom control, over any life-sustaining treatment if the result of the latter is likely to be a materially impaired quality of life or if she is likely to find such treatment (or the need to be in hospital to receive it) unduly distressing. In particular, we would not wish her to be given an invasive treatment (such as CPR), with little or no chance of success in maintaining her existing quality of life.’
By now you should be able to see where I am going. If my mother were to fall ill with coronavirus she would be a high-risk patient. Would we want her in hospital – no. Imagine being a confused person in a place where you know no-one, everyone is busy and you can’t understand why you are there or, if you understand fleetingly, you have forgotten a moment later.
The ventilators that are much talked about in the press are a highly invasive treatment – a tube is put down a person’s windpipe – possibly through a cut in the throat – and such treatment may well not save their life or, if it does, may leave them with severely impaired lungs and needing intensive physiotherapy. I don’t think I need to ask you to imagine how traumatic my mother would find being ventilated, even if she survived the process.
The anticipatory care planning questionnaire from the care home asks ‘if you were suffering from symptoms which should be COVID-19, what would you wish to happen?’
The answer we have ticked is ‘keep me comfortable, treat any pain or other symptoms, and care for me in my care home’.
We have asked to be contacted quickly, which of course the care home would do, and to be consulted on how she would be isolated, for the protection of others.
Does this keep me awake at night? No. I firmly believe that my mother, if she had the capacity, would make the same decision for herself. She would want to be in familiar surroundings with people who care about her. The nurses and carers who look after her make her smile and I do believe they care about her – it is hard to clean someone’s bottom if you don’t.
So that is the decision seen from her perspective. There is another, very important perspective from which it needs to be seen too. And that is the perspective of the medical staff in the care home and those in the NHS who help them make treatment decisions.
It is in the DNA of the NHS to try and save a person’s life at (almost) any cost. We know from Italy’s experience that NHS staff are at risk of being faced with very difficult decisions about who to ventilate. It will be incredibly helpful to them to know what their patients want and to be able to use that information to inform their decisions.
Professor Sir David King has been subject to some criticism for suggesting that patients of 90 or more could choose to stay at home if they fall ill with coronavirus.
He has raised an incredibly important point about personal choice.
In my opinion, the spokesperson for AgeUK who suggested that it is a purely medical decision ought similarly to be criticised for indicating that a person’s own wishes are irrelevant.
As the ReSPECT process I have mentioned above makes clear, what a person wants is very important. ReSPECT is a formal person-centred emergency care planning process to allow healthcare professionals to have conversations with patients about their preferences. Those decisions can then be used to inform clinical judgements and recommendations about future emergency care at a time when the person is not able to decide for themselves or communicate that decision.
It appears that, in Switzerland, there is open debate about what sort of medical intervention a person might want if they fall ill with coronavirus and a third of the population have a living will (the colloquial name for a legally binding advance decision to refuse medical treatment).
This conversation does not seem to be happening in the UK. It needs urgently to start. Please don’t shirk your own responsibility to think about what you want if you are unlucky enough to fall seriously ill. You owe it to yourself, to those who love you (don’t leave them guessing) and to the NHS to work this out.
To be clear, this is not about offering those at greater risk from coronavirus a different standard of health care. It is about choice. Let’s say you are unlucky enough to succumb to this illness. If you are fortunate, it will be mild, but I would suggest you need to think in advance about what should happen if you become critically ill, especially if you are someone for whom that risk is greater because of your age or health.
Would you prefer to die at home surrounded by things that are familiar to you and the possibility of the company of people you love or are you prepared to risk a trip to a big, busy and possibly overwhelmed hospital for invasive, uncomfortable treatment that may not succeed or may succeed but leave your quality of life afterwards materially impaired?
Anyone whose risks are so severe that they are being shielded and anyone of 70 or over or of any age with an underlying health condition listed in Public Health England’s Guidance on social distancing should be thinking about what kind of treatment they would be prepared to receive and how they see the balance between comfort and symptom control and the sustaining of life.
For some the decision will be easy, for some it will be very hard indeed and for others, it may be unbearable to think about it. Please do your best.
In the current circumstances, the opportunity to discuss matters with your GP may be limited or non-existent, but this should not stop you considering what you want. The NHS website gives guidance about how to make an advance statement (a written statement that sets down your preferences, wishes, beliefs and values regarding your future care).
An advance statement is not legally binding, but must be taken into account by anyone who is making decisions about your care. The NHS website also gives guidance about making an advance decision to refuse treatment (or living will), which is legally binding, provided it covers the circumstances as they turn out to be.
Neither an advance decision or an advance statement is any good unless you communicate it. Don’t simply tell a loved one, who may be absent or uncontactable at the critical time.
Crucially it needs to be available to anyone who needs to make decisions about your treatment to aid them in making those decisions and especially the emergency services. My mother’s was kept with her most recent repeat prescription (also useful to the emergency services) in the fridge and all those caring for her knew where it was.
These steps are just as important as social distancing.
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