Let me tell you a story – a true story of a clinical encounter I had a few years ago. It was, as I recall, a cold, dark November evening – and it was raining. I had been the duty doctor at the GP practice where I used to work and, at around 5.30 in the afternoon, I had taken a call from a nursing home regarding one of their elderly residents. A man with advanced dementia had been unwell all day and the staff were now really quite concerned about him.
Talking on the phone. it soon became clear that I needed to make a home visit, so I said I’d be along, just as soon as I’d finished seeing patients at the surgery
And so it was that I arrived at the Nursing Home a little after 7pm. I confess to having been a little annoyed that, given the patient had been unwell all day, the visit hadn’t been requested earlier. Had that happened, somebody could have gone out to see him at lunchtime and I would now have been on my way home, But then, I didn’t know what pressures the staff may have been under that day and it’s not just doctors who are sometimes stressed. And in any case, it wouldn’t have done any good to complain, so I gave a cheery ‘Hello’ to the young nurse who was waiting for me, and allowed her to lead me up the stairs and along the corridors till we reached the door, through which my last consultation of the day was to take place.
I was ushered into a rather austere room, a few framed verses of scripture the only decoration breaking up the otherwise bare and cream coloured walls. I gazed at them briefly, noticing their reassuring words of a brighter tomorrow, and then allowed my eyes to be drawn to a frail elderly man that, not being my patient, I’d never met before.
Not quite 90 years of age, he looked uncomfortable as he sat, uncommunicatively, in a high backed chair. His mouth was hanging open and his eyes tightly shut making it obvious to me that he was genuinely unwell, More than that, it seemed to me that here was someone whose life was drawing to a close.
With no history available other than that of the nurse who told me how he’d not been eating well, I began my examination. But, other than his obvious frailty, I didn’t find anything specifically wrong with him. His skin was a little mottled and rather cold to the touch, and his blood pressure was on the low side, but when I listened to his chest, though his breathing was a little laboured, there was nothing I could hear that convinced me that he had a significant chest infection. And so my diagnosis was really rather vague – nothing other than that my initial impressions had been correct, which is to say that, not withstanding how difficult these things can sometimes be to judge, this man did indeed seem to me to be dying.
So what happens when we die.
Well in short, when someone dies their heart and, as a consequence, their circulation starts to fail and, as a result, the brain and other organs receive less oxygen. This in turn causes them to function less well and eventually they stop working altogether. And so the individual dies.
Sometimes this process happens quite suddenly as, for example, following a severe injury or an acute medical event – such as a heart attack or a stroke. Sometimes the process is much more gradual – with malignant disease for example, or, as in the case of my patient, advanced dementia. And sometimes, of course, it’s simply a result of old age – we just eventually wear out.
But irrespective of the cause, the end is always the same.
Many with a terminal disease will feel increasingly tired in the weeks prior to their death – they’ll sleep more, and may want to eat less, a consequence of their digestive organs not working so well. That dying relatives aren’t eating properly is often a source of great concern to those who look on, but it really needn’t be – their lack of appetite is but a normal part of the dying process, something that will inevitably lead to weight loss and, oftentimes, a thinning of the skin.
In the last few days before death, the dying person’s breathing may become erratic – sometimes it may slow, sometimes it may speed up. Fluid may accumulate in the lungs causing the breathing to sound rattly. There may be a slight cough. And as the circulation of blood slows further, the skin may become greyer and take on a blotchy appearance. Their body may also feel colder to the touch.
With reduced oxygen to the brain, the person who is dying, as well as being more sleepy, may, when awake, be somewhat vague, and sometimes rather confused – they may even hallucinate.
As the end draws ever closer, most people will spend much of their time asleep. They may not be able to communicate but we should never therefore assume that they can’t hear- instead we should always speak to them as we normally would. The skin may become still more blotchy, blood pressure may fall, and urine production will tail off. Breathing will become more laboured and there may be some restlessness.
And then, as death becomes imminent, and the blood supply to their body declines even further, the dying person will sleep even more. Their skin will become even colder to the touch, their eyes may become glassy and remain only half open, and their breathing may become very irregular. And those who have not become unconscious already, will usually do so in the hours immediately prior to death.
And so the end is, for most people, generally very peaceful.
And so back to my story.
As I left the man’s room, I conveyed to the nurse, who had stayed with me as I’d made my examination, that I believed the man to be very ill and that it seemed likely to me that he would die within the next day or two – if not even sooner. To which she responded by asking me if she should call an ambulance.
You may be asking yourself why.
Well the reason was that the man had what’s called a TEP or a ‘Treatment Escalation Plan’. This had been written some time previously. And in it was stated that, in the event of the man becoming more unwell, he wanted to be admitted for inpatient care. And so, the nurse, not unreasonably imagined, that these were wishes that I would surely want to comply with.
Which put me in something of a quandary because my feeling was that this dear man should be allowed to die peacefully in what had been, for some fifteen years, his home.
So what would you do if you were to find yourself in the position that I had now found myself? Would you go with the previously written directive, and admit the man to hospital in the hope that the clever doctors there would be able to pull off some kind of miracle? Or would you insist on ‘playing God’ and decide for yourself what you thought was best for him?
Well I’ll tell you what I did do. I decided to play God! Well, kind of at least.
The idea of ‘doctors playing God’ is generally considered to be a bad thing. But I have always felt that it rather depends on what kind of a God they’re trying to play. Because if they are trying to act in the way that a good God would, then surely that is something that they should be encouraged to do. Provided, of course, that they don’t actually think that they really are that infallible.
And so, absolutely convinced that to admit this man would serve no useful purpose, and only ensure that he would die on a busy hospital ward surrounded by people he didn’t know, I decided that I would do what I thought a good God would do and not admit him. But, recognising the possibility that I might be making a huge mistake, I sought to speak to some other people too.
First I chatted to the senior nurse manager who had been acquainted with my patient throughout his time in the home, and cared enough about him to express the view that she would be sad if he were to die in hospital. Encouraged by her response, I then picked up the phone and called the man’s younger brother, somebody who, on account of my patient never having married, was his sole relative.
When he picked up, I gently explained to him what I felt was happening – how it seemed to me that his brother was dying and that he might therefore like to pop over and see him. Unless, of course, he thought I should act on what was written in his treatment escalation plan and admit him to hospital.
To which I received the very clear message that I’d been hoping for – that he too felt that to do so would not be in his best interests and, more importantly still, that irrespective of what was contained within the TEP, it would not be something that my patient would now have wanted.
And so, together, we decided that the man should be cared for by those he knew, and in surroundings with which he was familiar.
And so to the matter of advanced care directives – by which I mean, making others aware of how you wish to be treated should a situation arise that leaves you no longer able to make those wishes known. It’s important. Because, although in practice, I have not been in too many situations when I have been faced with a difficult dilemma, they do, nonetheless, sometimes arise.
So it really is worth talking with those you love – and with those who love you – who hopefully are the same people! Let them know what’s important to you, what makes life meaningful, and what you still need to be able to do in order for you to still want all the stops to be pulled out for you. Give them an idea of what would be best, not for somebody else, but for you. And remember here that there isn’t a right or wrong place to die, nor is it written in stone quite when one should, or should not, want ongoing active treatment. In this regard, we’re all different.
And whilst it’s great if you can get these things written down and have a copy made available for our GP, it’s still hugely valuable to have your wishes firmly in the collective consciences of those who make up your nearest and dearest. Because, whilst it may not always be possible, the clinician attending you in such circumstances will, ideally, seek to speak to your loved ones, irrespective of whether any written instructions are available, and indeed, irrespective of what those instructions might be.
Because no advanced directive can cover every eventuality, sometimes what is requested may not prove possible and, as with the case we’ve been considering, things change – what might have been appropriate for a TEP written a year or two previously, may not be appropriate today.
So, difficult though the conversation may be for some, it’s not one that can happen just once and then be forgotten. On the contrary, it’s a conversation that needs to be had repeatedly as circumstances change, and one’s own wishes change with them. And remember, such conversations don’t just help the one who is affected most by the decisions being made, they are also extremely helpful to those who, without your guidance, may feel burdened by having to make decisions for you.
So back to my story.
Having ended the telephone call, I didn’t simply write up my notes and head off home to enjoy my dinner and a well-earned glass of wine. Because there were at least two other things that still needed to be done.
Firstly, I needed to update the TEP. What I didn’t want to happen was for the night staff to come on duty and, not being clear of what the new plan was, call for an ambulance when the patient inevitably deteriorated further. Because if they did, and the TEP still indicated that the patient was for hospital admission, the ambulance crew would likely feel compelled to act accordingly.
And secondly I needed to write up what are sometimes called ‘Just in Case’ medicines. Just in case medicines are, perhaps predicably, for just in case and are generally prescribed way sooner than they were for the patient we have been considering. Usually they are issued as soon as somebody is deemed to have a terminal diagnosis – which may well be months, or even a year or more, before death is actually expected. But they are still issued so that they can be there in a person’s home ‘just in case’ they are ever needed.
The drugs are ones that can be injected either as in this case, by the nursing home staff, or, for those in their own home, they can be administered by District Nurses. They usually consist of
· Morphine – principally given for pain relief but it can also be helpful for restlessness or feelings of shortness of breath.
· Levomepromazine – principally for vomiting and nausea, though again, it can be helpful for restlessness
· Hyoscine – a drug principally used for drying up the irritating secretions that can collect in the airways and make a horrible rattling sound – one which is quite often distressing for relatives to hear, and
· Midazolam – a Valium like drug that can help with agitation and restlessness.
Two things about ‘Just in Case’ medicines. Firstly it needs to be stressed that, if your doctor prescribes them for you, it does not mean that he or she expects you to die soon. Remember, they are for just in case – often they go unused for months and months and months. And sometime they are never used at all. Because, though pain and nausea do sometimes occur, very often they do not, and in my 27 years working as a GP, a number of my patients died, even of malignant disease, without ever needing more than paracetamol for pain relief.
And likewise, whilst some patients do experience pain, nausea and restlessness that is difficult to control, in the vast majority of people, it is possible to adequately control these troubling symptoms, even if, occasionally, it takes a day or two to get the medication absolutely right.
Be assured then, because of the excellent district nurses and equally excellent palliative care teams that we have in this country, the process of death, though still a deeply sad one, is not, for most people, one that is unbearably painful.
There is, of course,much more that could be said, not least about grief and the spiritual needs of both the one dying and those who mourn their death, but for now I’ll not say any more other than to mention that I’ve touched on such matters in previous blogs, links to which you can find below.
But before I do finish, there is one more thing I need to tell you. Not that the patient did die peacefully at home the following day but something that the brother of the patient in my story said to me after we’d decided we’d not send him to hospital.
For a few seconds the telephone line on which we were talking went silent, and then the brother of the patient spoke again – this time his voice wavering a little as he tried to control his tears.
‘Can I tell you something Doctor? I want you to know that my brother is my hero’.
I found those words intensely moving – on account of the fact that he didn’t say ‘He WAS my hero’. Rather he said ‘He IS my hero’.
Four whispered words reflecting just how much my patient was valued by his little brother – largely on account of how he had cared for him through what, I gathered, was a very difficult childhood.
Though they were only whispered, these four words are ones that need to be heard loud and clear. Because it needs to be recognised, not least by me, that somebody who could all too easily be thought of as nothing but ‘a demented old man’, can still be somebody else’s hero.
I may have been a bit irritated at having to make that home visit that evening, but I am so, so glad I went. Because I needed to be reminded of something – that it is all too easy to self-importantly imagine that we are worth more than those we foolishly dismiss as of no value, simply because of what they are no longer able do.
And that’s something we must not ever do.
Because we all, even in the years of our own inevitable decline, will continue to be of value for as long as we are truly loved.
And true love, that love that loves because it loves, is a love that never dies.
A fictionalised account of this true clinical encounter can be found here
Related posts:
To read a review of Dr Lucy Pollock’s hugely helpful first book. ‘The Book About Getting Older’ click here,
To read a review of Dr Lucy Pollock’s hugely helpful second book, ‘The Golden Rule’, click here
To read ‘Paddington and the Ailing Elderly Relative’, an end of life story in which the aforementioned Dr Pollock makes a cameo appearance, click here
To read ‘A Language All It’s Own’, click here
To read ‘An audience with grief’, click here
To read ‘Hearing the grass grow’, click here
To read ‘On death – my first and last’, click here
To read ‘Bleak Practice’, a fictionalised version of the real life case used above, click here
To read ‘Assisted Dying – we all need to be happier to help’, click here
To read ‘Vaccinating to remain susceptible’, click here
To read ‘Shot of Love’, click here
To read ‘Health – it’ll be the death of us. Is there institutional arrogance in the NHS?’, click here
To read ‘Reflections on the death of Leonard Cohen’, click here
To read ‘On my near death experience’, click here
To read ‘Weeping with those who weep’. click here
Some musings 