At a meeting last Tuesday, I agreed to write a blog about dying.
I suspect most of you would not volunteer to write about death. It isn’t necessarily on the tip of the tongue. And yet, for me, it is there.
In the past two years I have encountered more death than at any time in my career.
Caring for older people during a pandemic that particularly affects that group is a clear consequence.
It has been awful.
I won’t mention the stoicism demonstrated by sons and daughters who couldn’t be present as their parents lay dying in hospital or care homes, nor the swingeing restrictions on funeral attendance that were in place.
And, dying matters. Does it?
I don’t want to be facetious and quote Benjamin Franklin* and, for most, as our society modernises, progresses and at the edges starts to fail, death has lost its familiarity.
For me it is so commonplace that I have become slick at the discussion.
As a younger doctor, for example, I used to struggle to hold conversations about resuscitation, now, I have a useful set of phrases that seems to make it easy, that seem to enable a dialogue that is not stilted by awkwardness; I mostly talk about allowing a natural death and dying peacefully, a common aspiration.
I rarely mention the consequences of chest compression or discussions with the police or coroner’s officers for those who die naturally but without a document in the home.
You might consider Dying Matters something that is best left for the time it is in front of you, when it is unavoidable, inescapable. ‘I’m only young, I don’t need to consider death,’ you might think, and, for the most, you will be right.
In my experience, many people up to their late-80’s still see themselves as ‘young’ – something happens to those in their 90’s where they realise, ‘I’m getting on.’
And yet, let’s talk about it.
I’ll come back to the old and the sick, those who most commonly die in our society, and focus on how it matters throughout life.
Freud suggested that we can’t imagine our own death.
I’ve tried and I can although it isn’t a comfortable or pleasant.
When I was younger, in my late 20’s or early 30’s, probably when I bought my first house or just after my children were born, I thought briefly about death. I have a will, without which you risk, becoming intestate. Which means that when you die, not only will your family have to cope with the grief of your loss, they will have to struggle with banks and solicitors to finalise your affairs.
I had a head-injury involving a Sheffield tram which also helped.
A little while later, I faced the deaths of both my parents. My dad first, through cardiac arrest on a lonely hospital ward in Glasgow and my mum, eventually, at my request, following arguments with the doctor in charge, through sedation and palliation.
Most of us employ something called magical thinking.
It is the notion that not thinking about something will make it not happen; it is a form of positive mental attitude, which as we know works, and there is the opposite, the consideration that talking or thinking about death too much might make it happen, tempting fate you might say.
In Yiddish there is the term ‘kinnehora’ which is said quickly after people talk about death, it is a way of safeguarding against or cancelling the evil-eye.
The problem is, that if we don’t think or talk about death and dying, it will be forgotten. Time and effort will not be spent ensuring the possibility of a good death.
‘What do you mean ‘good death,’ how can death be good?’ you ask.
As I have said, for the most, death is inevitable. For the majority, death will be accompanied by an old age, for many either dementia, heart disease or cancer will be a cause.
Shining a light on ignorance is a good way to remove its associated harms, talking about death can ensure that people are given an opportunity to know what is happening to them and their relatives.
Recent data in Rotherham has shown that for those dying in the town, only a minority are ‘fast-tracked’ that is, provided NHS funding for a life-limiting condition, indicating a person is in the last three-months of life. And for those who do, for most, their death happens within a fortnight.
This suggests our doctors (it is generally they who are accountable) (and, don’t get me wrong, this isn’t a Rotherham thing, the data is the same nationally) are poor at diagnosing the approach of the end of life.
Diagnosing death by comparison is straightforward, there is no sign of life, no breathing or heartbeat.
You might wonder why doctors are sometimes poor at determining the point at which treatment is futile.
The reasons are complicated and as much to do with our sometimes broken health service that does not respect the importance of patient-clinician (doctor/nurse/therapist) relationships through the growth and maintenance of continuity of care (the doctor/nurse A, then B, then C or D is looking after you phenomenon) as modern medicine’s focus on diagnosis and treatment.
Often the decision to reach a diagnosis overlooks the patient and their wishes with a diagnostic or task-focused goal being of greater importance.
‘I am not sure what is wrong with you but I don’t think you are going to get better,’ versus, ‘Let’s do this test, then that one and that one until we pin-down what is wrong.’
It is hard if you are the patient or relatives to know what to do.
There is an odd phenomenon I have recognised over the years. It is the unlearning that seems to happen in healthcare.
Mostly, when talking with medical students and junior doctors, those in their first few years after qualification, when I ask, ‘Have you ever seen a patient receive treatment which you feel is futile or unnecessary, especially if the patient is obviously dying?’ The majority will respond in the affirmative.
It is not uncommon for patients to realise they are dying, for relatives to think, ‘I am not sure what the doctor is doing, mum is dying,’ and yet, the doctor perseveres with intravenous antibiotics, escalation of observation, treatment and investigation.
This is the lay folk, those without specialist training who appear to see the obvious, whilst those with decades of learning, of post-graduate qualifications and education seem blind.
Perhaps they are too close or too far away to see. Perhaps occupational myopia is a thing.
I don’t as yet have a way to fix this mismatch in perception.
Perhaps that is the point of this blog, to provoke discussion or reflection.
It is easier as I said at the start to talk about something else, and yet, this is too important to ignore, it is too closely related to who we are and what we are doing to postpone.
Let’s talk about death, let’s talk about dying matters.
What do you think?
If you enjoyed this article, there are many more at www.almondemotion.com or you can search ‘almondemotion’ and ‘falls’ ‘older people’ ‘person-centred care’ or ‘end of life’
*Our new Constitution is now established, and has an appearance that promises permanency; but in this world nothing can be said to be certain, except death and taxes. Benjamin Franklin, 1789.