Could this be the ultimate legacy?
Everywhere I look at the moment are tributes to, memories and images of the HRH Duke of Edinburgh. That's hardly surprising given he was a man who lived his life in the public eye from a very young age and who was our Queen's consort and partner for over 73 years. I know there are very mixed views on the monarchy, his personality and his work, but this is about a potential legacy that could impact on each and every one of us.
It's not about his life but about his death. It's my reflection on how well his needs and preferences were met as he approached the end of his life; it's also about asking myself and others whether this quality of care is possible for all, or whether money was such a significant factor in ensuring that personalised care that it would only be possible for the very few. I know that significant funds are necessary to access private healthcare but does that mean other places can't offer some of the things that were provided for the Duke of Edinburgh?
Undoubtedly he received some excellent care that could and should be applied for everyone. Can you offer good end of life care on an NHS budget or in some of our more disadvantaged communities? I sincerely hope that professionals working in most acute community and mental health trusts, most GPs and their staff and most social care workers are shouting "Yes, Yes, Yes. We provide excellent end of life care" very loudly and tutting at the very idea that not everyone gets a good death. I know from my work as a regulator that excellence is not universal, sadly. Too many excuses and too much rushing to complete less important but more measurable tasks, perhaps?
In the last trust I inspected, as the first Coronavirus patients were arriving in their emergency department and just before we entered lockdown, they had a very simple message that saw their end of life care rated as Outstanding. That message was 'You only die once' ; it was understood by all staff who knew they only had one chance to help people have the peaceful, comfortable and dignified death that is the want of us all for those we love.
So what end of life care did the late HRH Prince Phillip the Duke of Edinburgh receive that could and should be everyone's deathright?
The first question to ask ourselves when caring for someone very unwell or very elderly is, whether you would be surprised if the patient were to die in the next year, months, weeks, days? Identification of those approaching life's end is not difficult, it's almost intuitive. There are measures you could use, tangible indicators but very few people would be able to say they were truly surprised at Prince Phillip's death. Sad perhaps, hoping he'd make it to his hundredth birthday possibly, but not surprised. That recognition is so important in ensuring that planning takes place to enable the person and their family to be involved in conversations and decisions that will make the person's approaching death less fearful, more accepted and with a focus on quality of life. Prince Phillip recognised his own mortality and planned most of the details of his funeral. Not everyone will want to design a car for their cortege, not everyone will have the money or ability to do so but by professionals recognising and discussing the person's end of life care they may help the person realise their wishes. That might be as simple as arranging for them to see the sea one more time, to see their daffodils in bloom (albeit in a vase beside their bed) or to have a priest visit and offer the Sacrament of the Sick. It might help inform the decision as to whether their daughter travels back from their home on the other side of the world to say goodbye before rather than after their parent has died.
It will also help professionals approach discussions around DNACPR decisions with a confidence that for this particular patient, an ambulance transfer to hospital and vigorous attempt to restart a heart that is too tired to beat anymore may not be as desirable as a 'natural death' in their home, surrounded by family or staff they know and trust. Conversely, it might just make professionals stop and think whether the DNACPR they are filling out without much though is really appropriate. If you would be surprised that the person before you were to die within a year, then maybe using a DNACPR as the default setting for a younger person with a learning disability might not be the right decision. Its about that thinking and recognising a person who is slowing down as they travel towards their death.
The Gold Standard Framework has a very good resource for recognition of a person approaching death that supports and provides evidence around the initial intuitive response to the question.
NEW PIG - Updated 15.5.2018 vs18.pdf (goldstandardsframework.org.uk)
Following on from that identification, the Prince clearly had his wishes and care discussed with him and his family. That open communication is essential and should be the right of every person and their family (where appropriate). NICE Guidance Quality Statement 13 recommends that people approaching the end of life and their families and carers feel that the assessment process was a useful means to considering their needs and preferences, identifying next steps and securing appropriate services. People approaching the end of life feel satisfied that they have been able to discuss, record and review their needs and preferences if they would like to do so.
That doesn't feel like a 'big ask' and is not dependent on a person being very wealthy or a particularly well resourced service. Professionals working in health and social care talk to patients and families all the time. Sadly, I know from personal experience those conversations are often couched in vague euphemisms which leads to ambiguity and a lack of clarity. You get better from being "Quite poorly" sometimes, don't you? "Lets take one day at a time" means you expect them to recover doesn't it? How honest are you with patients? How confident are you at asking family whether they have thought about their parent's care at the very end of their life? How would you feel if that veiled attempt to suggest the end of life was fast approaching was misinterpreted and the family decided to stay away until their parent was "More able to cope with visitors"?
I could run to pages about the simple lessons that could be taken from the Duke of Edinburgh's care and used to improve the care of others, if we reflect carefully. That business with the umbrella's being used to shield him as he was moved to the ambulance to transfer between hospitals. How thoughtful to recognise the need for privacy and what a simple solution. How much consideration to people's dignity and privacy do you give? I have certainly been in care homes where doors are wedged open to allow observation - they also allow people to see in when someone is being washed. I've seen people in their last few hours in bays on wards with just a half closed curtain between them and others. I've certainly seen a lot of bottoms poking out from hospital gowns. Could we do better at ensuring that we protect people's dignity?
There are many lessons to be learned from the end of life care of HRH Prince Phillip. Its interesting to watch the media coverage of his illness, death and funeral arrangements whilst reflecting on how well you and your organisation provides end of life care. It isn't the big stuff that matters; most of us don't expect a 21 gun salute and military band. Its the small things that matter. The conversations, the listening and the thoughtfulness.