At work, I think about death and dying a lot. I’m not a clinician or a carer – I don’t work with people who are ill or frail – I wouldn’t have a clue what to do with a dose of medication or a bedpan.
But I work for an organisation (the Scottish Partnership for Palliative Care) that brings together professionals from the NHS, social care, charities and government to try to improve people’s experiences around death, dying and bereavement.
And everyone I work with agrees on one thing – planning ahead for ill health and death is important.
Planning ahead is important
Making plans when you’re healthy means there is less to think about if you get ill. Everyone (no matter their age) should think about granting a power of attorney, making a will and completing and advance directive.
People who have reason to believe their health is likely to become worse should talk to the people close to them about what matters most to them, and speak to healthcare staff about making an anticipatory care plan.
Planning ahead makes it more likely that someone will get the care they’d choose. It also makes the financial, legal and practical consequences of illness and death a little easier to cope with.
‘the general public’
One of the key questions that keeps cropping up is ‘how do we get members of the public to plan ahead for ill health and dying’?
We talk about potential barriers… superstitions and reluctance around discussing death… misunderstandings and fear… costs attached to legal planning… limitations brought by healthcare culture, communications, resources and systems. And we talk about potential answers… awareness campaigns… public education…cutting out jargon… making planning seem more normal and less scary.
There are lots of things to take into account, and I don’t think we’ve solved it yet.
But for me, one thing is clear – if we want people to be able to plan ahead for serious illness and dying, there needs to be good information available for people who want to know more.
The truth is out there
Lots of information is already out there – various organisations provide information in leaflets and websites. Increasing amounts of information are available through blogs, social media and films that have been made by people with personal experience of illness and care. Demystifying Death Week attempts to raise awareness of the importance of these issues.
However, a recent UK review by Selman et al, found that there are some key weaknesses in the public information available about planning ahead for ill health and death:
“existing guidelines and resources are to a major extent clinician-focused; there are few video- and web-based Advance Care Planning resources for the public and those that exist are scattered and piecemeal. This is a concern given good quality evidence that online and video ACP interventions are beneficial, particularly among people with limited English proficiency, poor health literacy and/or from otherwise disadvantaged communities.”
Reading these conclusions reinforced some thoughts I’d been having for a while. It isn’t good enough just to have information ‘available’. We need information that:
- People can find
- People can understand
- People can trust
- Answers people’s questions
The Truth! You can’t handle the truth.
I’ve noticed that the provision of public-facing information about serious illness and dying is often guided by a desire to protect members of the public from anxiety. You can see this through the use of indirect language or euphemistic content. Sometimes the information you’re looking for (information that might be seen as negative) is either hard to find or not there at all.
In other words, a desire to protect people from distress can result in information about ill health and dying that isn’t clear, isn’t comprehensive, and doesn’t answer the questions and worries people have.
The desire to shield people from unwelcome information, and to avoid creating unnecessary worry is understandable. But is it helpful?
Can we do better?
Over the last year, illness, death and bereavement have been on everyone’s minds. Daily, we hear about the death toll due to covid-19. We hear about the problems caused by Long Covid. For a year we have stayed away from the people we love in the hope it will keep them alive.
After the year we’ve had, is there still a need to protect people from thinking about serious illness and death? Or do people actually want more information about these topics? For many people the facts may be less worrying than whatever they are imagining.
Communicating sensitively is paramount when providing potentially unwelcome information, but this is not the same as limiting exposure or sugar-coating facts. It is possible to provide comprehensive, accurate information that acknowledges uncertainties, while maintaining a tone of kindness, empathy and respect for the reader.
Learning that someone will not get better, or that the ideal support services are not available, or that the end of life is close, will likely always be difficult. Yet, without honest information, individuals and families are ill-equipped to make decisions or plan ahead.
Links to further information
Hoping for the best, planning for the worst: information for people in Scotland who may be worried that they, or someone they care about, is at increased risk of getting seriously ill and potentially dying from COVID-19. Good Life, Good Death, Good Grief :: COVID-19: hoping for the best, planning for the worst (goodlifedeathgrief.org.uk)
Scottish Partnership for Palliative Care: Scottish Partnership for Palliative Care | Welcome (palliativecarescotland.org.uk)
Anticipatory Care Planning: Good Life, Good Death, Good Grief :: Making an Anticipatory Care Plan (goodlifedeathgrief.org.uk)
Demystifying Death Week: Good Life, Good Death, Good Grief :: Demystifying Death Week (goodlifedeathgrief.org.uk)
What enables or hinders people in the community to make or update advance care plans in the context of Covid-19, and how can those working in health and social care best support this process? Lucy Selman et al, 2020: ACP-in-COVID-review-17.8.2020.pdf (cebm.net)
Director of Good Life, Good Death, Good Grief