There is a meme based on the old joke relating to a patient, usually a man, in bed, in pyjamas (striped), asking the doctor (man), ‘How long have I got doc?’
Or words to that effect.
Perhaps there has been a comic misunderstanding;
The patient has nothing wrong; the scene is a crafted skit.
‘Maybe another 20 years,’ or, whatever.
‘How long?’ isn’t something patients tend to ask.
I am not sure whether this is because people don’t think about the question, genuinely don’t want to know or, as I suspect is most likely, are either too afraid or perhaps embarrassed to ask.
I often try to bring this up in conversation.
Not so much, ‘Do you want to know how long you have to go?’ Usually more subtly. Again, it depends on the time, the person and the situation.
A constant throughout medicine (at least as far as I believe) is to be open and honest at all times (not the same as being blunt), so, if someone asks, ‘How long?’ You should try to answer to the best of your ability.
Falling back on the, ‘I don’t know,’ or, ‘It is impossible to say,’ doesn’t offer anyone solace, hope or a starting place from which to plan.
Sure, it isn’t a science such as the dose of a certain medicine or level of x-rays required for a good image; it isn’t even the steadiness of a scalpel blade, probably because the level of complexity within the question, ‘How long?’ is beyond the ability of most to calculate.
There are too many variables.
Chance, probability, randomness; acts of God and such like multiply with mitosis, mutation, frailty and deterioration; we aren’t living in isolation, the interference or involvement of others plays a part.
And yet, there are predictors.
Me, sitting here, in my home, relatively fit and well, how long? Maybe not something to spend too much time considering.
There is a Zen approach which considers that when you get up in the morning you should leave your affairs (i.e. make your bed) as you may not come home that night; a perpetual state of readiness, or perhaps consideration for those who have to tidy-up after you’re gone.
Mulling over mortality can lower your mood and so, once you have sorted-out your will, perhaps righted any lingering wrongs, my thought would be to get on with life and focus on living through tomorrow rather than not.
Putting that aside, there are, predictors or indicators of the future.
You see, we, and that is me talking as a doctor, or clinician are quite good at working-out when things are going wrong.
For example, there is a system in use in the UK called the Early Warning System (actually ‘NEWS’ – with N standing for National) which takes basic physiological measures such as heart rate, blood pressure, level of consciousness and creates a score.
If your NEWS is persistently high, for example, your blood pressure is too low, heart rate too high and maybe your temperature too, we might define this as septic shock, and, unless something is done, you will not do well.
This tool is useful in hospitals as a guide for doctors and nurses to help them focus on the sick.
It isn’t very good for people who are dying and for whom there is no reversible cause, when antibiotics and intravenous fluids will not work.
Someone with disseminated cancer that has invaded their brain, lungs and liver can’t be helped by drips and medicines; perhaps their suffering, that is, pain can be addressed, but the march of the cancer can’t be stopped.
In such people and in particular those who are very old and frail who are approaching the end of their natural lifespans, numerical measures don’t help, indeed, they can often prove detrimental, as a treatment which might work for a 20 year old, saline and intravenous Benzylpenicillin might be unnecessarily invasive and inappropriate in someone who is 90.
Are there more measures that can determine if a person is dying?
Well, yes.
Losing weight, refusing food and fluids, being unable to get out of bed because of weakness, reduced level of consciousness, confusion; all these are indicators.
And so, yes, when a patient asks the question, it is usually possible to give an estimate beyond, ‘Who knows?’
In the world of palliative care – that is the discipline that supports the symptoms and provides care for those living with terminal or incurable disease we tend to use rough timescales;
Last year of life, last months (usually three), last days and perhaps last hours, although days and hours tend to blur.
Now, in case you thought I was not going to mention Covid, I am sorry to disappoint.
You see, we have a scenario in the UK, and, likely replicated internationally where those mostly older people (although there are a significant number of younger (officially under 65-year olds)) are living in care homes.
We can all remember April and May of this year when Covid swept through the country and we were in lockdown; the Government’s mishandling and poor planning resulted in Covid infections running through some care homes leading to the deaths of many residents; all because the staff had not received adequate training or PPE.
The world is now quite different, yes, we are in the midst of a second wave, yes, the care homes have received training (some, for example in Rotherham received training early-on thanks to the work of a visionary few) and PPE is available – supplies are adequate.
Yet, because of the trauma from the first wave, care homes have been locked down.
This means no visitors.
Now, this is opaque, as I have been and am a visitor to care homes; I fall into the category of professional and no one has stopped my coming and going. (I am being swabbed weekly to determine if I am infected).
The lockdown has stopped husbands and wives, sons and daughters from seeing their spouses and parents.
They have been locked out.
Some homes had a brief break in late summer when visiting was allowed; for some there were garden visits. Mostly, the disconnection from family members was complete – attempts to facilitate phone calls or zoom chats a failure, particularly for the many older people who have visual and hearing impairment and perhaps dementia.
Imagine a 90-year-old man who has visited his wife every day in her care home since she had a stroke two years ago suddenly prevented from seeing her. Maybe 70 years of marriage, daily contact ended.
‘You can use Zoom,’ proposed to the old man.
If he is lucky and his family can help and he can see and hear well enough to log-on and his wife, despite her stroke is able to do the same, supported by staff in the home (accepting the Wi-Fi is adequate) the conversations, usually public as someone else will often hold the device are mostly a failure.
I spoke with a patient yesterday who was quite dismissive of all of this, ‘During the war, people were separated from their families…’ Yes, we have become soft; doughy.
The Podcaster Dan Carlin talks about the rise of society as people marching upstairs in heavy boots (the ascent to sophistication) – rising in development and prosperity only to decline wearing silk slippers.
We, the softies of the 21st century struggle when separated; it cuts deep. All made worse by the pandemic.
And yet, there is a solution.
You see, alongside the ‘professional visitors’ there is another way through the system; ‘end of life’ – if your mum or dad is dying in a care home you can visit.
You have to narrow this down as, yes, we are all dying, every day is one less day of our lives; that won’t cut it and, yes, living in a care home, on average equates to a person being in their last years of life, again, that is too imprecise.
Once a patient is deemed to be at the end of their lives; nothing written-down mind, yet generally considered the last three months and in particular the last days, family can get-in; they will almost certainly have to wear masks, gowns and all the rest, yet, they will be allowed-in.
For me, the sine qua non of contact is hand holding.
Lockdown has stopped the holding of hands.
Often old men and women will seek human contact, particularly when feeling isolated – and when I reciprocate with my gloved hand (that they don’t appear to notice as being anomalously purple or blue) we are able to make contact, to connect.
It is this human connection that has been eaten-away by Covid; hugs and handshakes, milling and mixing. Our gregarious human nature turned upside down.
And so, if a patient of mine meets the ‘criteria’ I have described this can allow for them to get access to their families – I won’t go as far as friends.
And this, perhaps beyond all the other reasons for being open and honest with our patients is a reason to explore this area.
Another trope in the world of palliative care is to ask the ‘surprise’ question, ‘Would I be surprised if my patient were to die in the next year?’ if the answer is, ‘no’ – this is a flag to start the conversation.
It is interesting that often doctors are very bad at predicting death; their belief in a therapeutic or problem-solving model can blind them from the obvious – there is always something to investigate or treat; accepting the inevitable is failure.
And yet, despite the sometimes naïve question, ‘How much longer?’ it is my experience that those who ask this question do so because they can see the obvious, they are able to read the body language, the subtle turns of phrase that indicate a finite approach.
We need to work towards this honesty, we need to acknowledge our shortcomings and limitations, this will allow for a more human approach to care and perhaps help us see a way through the restrictions the whole-life lockdown we have imposed on care home residents, many of whom will not live another year.
Dr Rod’s Odd Blog (almondemotion) 