People die all of the time. Hundreds of thousands of people a year in fact. Some die unexpectedly, perhaps before their time. But most of us come to the end of our lives in older age – with around 70% of deaths happening after the age of 75 – and following a period of declining health.
That period of poor health might be short and sharp; but in reality most us can expect to spend our last decade or two acquiring health conditions and disabilities. Some may find declining health a pretty steady and linear process, but more usually there will be ups and downs and a crisis or two along the way. People may have been diagnosed with a life-limiting or terminal condition before they die, indeed they have been diagnosed with several, but many won’t. The only real certainty is that sometime, somehow it will happen to us all.
Thanks to COVID-19, death and dying is in the headlines once again.
At the time of writing more than 50,000 people have had their lives cut short suddenly and unexpectedly due to this pernicious virus. I say suddenly and unexpectedly because, regardless of anyone’s underlying state of health and likely life expectancy, the virus has undoubtedly changed the outcome many could otherwise have expected, and will have robbed them of precious time.
While COVID-19 has ‘stress tested’ pretty much all aspects of our health and care systems (including end of life care), it has also shone a spotlight on many of our attitudes and assumptions – about how we value health and wellbeing; how we work and live our lives; and how we view ageing and dying.
So in the midst of tragedy, when it comes to death, what have we learned? The answers could fill several books no doubt. But there are two lessons that stand out in my mind.
Belief in a ‘good death’ relies on feeling valued in life
I’ve spent a lot of time recently reflecting on just why so many conversations and so much of the communication around death and dying has been so difficult – why it’s generally so difficult – and this is the conclusion I’ve come to: it’s hard to persuade people they will be supported in a good death if they don’t believe they are valued in life.
Yes, we have heard quite a media furore at times over the last few months, but it would be a mistake to write it off as ‘just the media’. The distress, fear and emotion expressed by older people and families was genuine, widespread and ran deep.
While there are very good arguments to be made for improving public understanding of dying, including the purpose of CPR (and therefore DNACPR – do not attempt CPR), of advanced care planning and the limitations of treatment. Such understanding will only take us so far.
Ageist attitudes are sadly never very far from the surface.
Too often older people are made to feel that their treatment and care is a burden on the rest of society, that they should make way for people whose lives hold more value. Older people are often collectively written off as a homogenous group, and older age as a miserable time of inevitable poor mental and physical wellbeing. Also specifically in the context of the pandemic, a group for whom there is little hope. Expressions of these attitudes have been all too easy to find of late, even amongst those who, frankly, should know and aspire to do better.
Older people can be left feeling ‘written off’
So with this in mind, we must ask ourselves this: how do we expect someone to feel when they receive a call ‘out of the blue’ to ask about their advanced care plans? How do we expect a family to react when they find out their loved one has had a DNACPR added to their notes? Thankful? Comforted? Unfortunately, ‘anxious and upset’ is generally closer to the mark.
The bottom line is that unless individuals are truly confident that decisions and recommendations are being made in their individual best interest, free from presumption and with as much value placed on helping them to live well as on supporting a comfortable death, the reaction is more likely to be suspicion and fear that they have been ‘written off’ and denied help.
Clearly many conversations are very well managed by empathetic and dedicated professionals who absolutely instil this confidence. But wouldn’t it be so much better, so much easier, if all conversations about dying started from a place where everyone, and everybody’s family, were confident that their health and lives were truly and equally valued?
Living longer now means living with more health conditions
The second lesson takes us full circle to that question of who dies, why and how. Increasing longevity is one of the great successes of the last century. Our success in curing disease, in managing long term conditions and reducing the likelihood of injury means far fewer people die with a single health concern.
It is the case that some of us can expect long lives with relatively short periods of poor health, but for most, and more typically those experiencing the greatest health inequalities, we will be living with multiple conditions, disabilities, and frailty at the end of our lives.
On one level this makes no difference. The things people say are important to them don’t really change. But it does fundamentally change the nature of how people think ahead and plan.
Many of the tools and approaches we use today in end of life and palliative care are rooted in the experiences of diagnosed terminal illness and are implicitly centred around the idea that there are knowable and known outcomes. They struggle to flex and respond to the inherent ambiguity of a state where, although it may be clear that someone won’t live a lot longer, there is no certainty about what may happen next.
How can we attempt to plan for the unknowable?
That limitation has become more apparent during the course of the pandemic. People who may very rightly have been deemed to be at high risk if they contracted COVID-19 were asked to consider an advance care plan. To many this felt overwhelming. How could they possible answer a question about, for example, whether they would want to be admitted to hospital without knowing more about how unwell they would be and the likelihood of recovery? Too many unknowns even in the context of a known elevated risk.
And if you apply this logic across the board, the broader limitations of our approaches become evident. A fall, an infection, an exacerbation of an existing health condition, a sudden health crisis – any of which could, depending on the circumstances, be fatal to those in a fragile state of health. Equally, they could recover (if not to previous levels of fitness) and carry on. You can’t plan for everything and your thoughts may vary from one situation to the next.
The answer may lie in embracing uncertainty
This is not a repudiation of the idea we should encourage people to think about and plan for the end of their life. Far from it. The last thing we should do is lose the gains the end of life care and hospice movement have brought about in recent decades.
It’s rather an acknowledgement that population ageing has changed the parameters of the problem. We now need to find ways of doing it that are more meaningful to people who are approaching the last phase of their life, embracing the inherent uncertainty in how those last months and years may unfold.
As an older gentleman once said to me: “You tell me what’s going to happen, I’ll tell you what to do about it.”
Problem is I can’t. No one could.