Should hospital nurses and doctors be keeping the relatives of patients informed ?
As a prelude, I'll comment that - if approached 'from a legal perspective' - this question starts with mentally-capable patients and the requirement to obtain Informed Consent, and would end with mentally-incapable patients and the implications of section 4(6) of the Mental Capacity Act.
But I am going to use a more down-to-earth approach, here.
Recently I received an out-of-the-blue e-mail, from someone who believes that 'the NHS set out to kill my loved-one, and to cover it up'. The e-mail started with: 'Is it possible to talk to Mike Stone? emailing and Internet is not appropriate and not manageable for elderly relative of a LCP victim.'
Her 'elderly, frail and somewhat debilitated, and mentally incapable' parent (my phrase there, not hers) had been admitted to hospital after a choking incident, and within about a week was dead. During that week, the parent was made 'not for resuscitation' (DNACPR) and placed on the Liverpool Care Pathway (LCP - something intended to bring good and compassionate behaviour to the final few days of a patient's life in hospitals, where staff are not end-of-life experts: now being scrapped, following the Neuberger review last year), and also moved to a single room.
The family - despite repeatedly asking the nurses and doctors - were not told 'what was happening' in any depth at all: the relatives were not told about the DNACPR, or about the LCP, and they were not told what drugs were being given, or why. Etc.
Basically, the communication between the doctors and nurses and the family, was ABYSMAL - despite the family eventually being present for most of the time.
Consequently, the family see 'our loved-one was moved to a single room, so that s/he would die out of sight' - it is considered good practice to put dying patients in single rooms if possible, so that the patient and family have got more privacy and peace and quiet. BUT IF YOU ARE NOT TOLD YOUR LOVED ONE IS DYING ... (then how do you know that ?).
Similarly, nurses and junior doctors, tended to not answer questions, perhaps pointing the family at a more senior doctor - but this senior doctor, usually wasn't available. I know that the NHS regards the discussion of things like DNACPR and LCP as 'sensitive', and tends to try and leave those discussions in the hands of senior staff. BUT IF THOSE SENIOR STAFF ARE NOT AVAILABLE WHEN YOU ASK THE QUESTION ...(then this looks like 'evasion', and that evasion could indicate a 'cover-up').
I'm sure this happens more than is acknowledged: an elderly, frail and perhaps mentally-incapable patient is admitted to hospital because of a bad infection, a fall, a choking incident, etc, and the family expect that within a week or two their loved-one will be back at home, in much the same situation as before the admission - instead, the patient is dead within a week or two, the family do not understand how their loved one went from 'not exactly very well, but definitely not dying' to dead, and because the hospital staff were not openly and fully talking to the relatives, the relatives perceive 'bad behaviour, non-caring behaviour, cover ups and even murder'.
This NHS behaviour is missing something obvious, and it is also confusing 'the patient isn't telling his relatives anything' with 'we must not share information without patient consent'.
Putting this simply, if a patient has reached a stage when the patient cannot communicate with either clinicians or with relatives, it is perfectly legitimate (and, there is some legal backing for the idea that family/friends are expected to be questioning professionals in this situation, as part of a 'checks and balances' system) for the family to ask nurses and doctors 'What is going on - what is being done to my dad ?': and the clinicians should be answering those questions, and properly engaging with family and friends.
The simple rule of thumb, probably, is that if a wife could be asked by her husband 'What have they been doing today, then ?', then the husband should be asking the wife: but if the wife has lapsed into a coma, or for other reasons could not answer herself, then it is perfectly reasonable for the husband to put the question to the doctors and nurses, and to expect answers.
NOT ANSWERING, MAKES THE RELATIVES VERY SUSPICIOUS - THIS SIMPLY CANNOT CONTINUE !
I have exchanged detailed e-mails with another bereaved person who has definitely experienced these 'communication issues', and I would be very pleased if anyone else who has also experienced this 'my mum/dad/brother/husband/etc died in hospital, which shocked me, and the staff never told me what was going on properly' situation, would post a comment. If anyone wishes to post a comment without identifying themselves, if you send the text of what you would like to post to me at [log in to view email address] then I will post it for you (I will NOT post 'abuse', and I will not identify named hospitals or named clinicians, if you post via me) because I think some light needs shedding on this issue.
I am going to ask for permission, to post a longer series of extracts from the e-mail I received last week - things are 'stronger in their own words'.
I wish to be clear, that the issue I'm trying to explore here, is NOT 'how well clinicians can predict clinical outcomes'. It isn't 'the doctors sometimes think a person will die, but the person recovers'. Although better predictions of how effective treatment would be, would be useful, the 'not telling the family what is happening' issue is different.
If your 'old and frail but in your opinion definitely not dying' loved-one is taken into hospital because of some 'incident' and you are expecting a recovery, but the clinicians don't tell you what is happening, you could (in theory, if clinical 'expertise' was perfect) have this.
The medics spend 3 days actively treating the patient, but after 3 days realise that 'it is 100% certain that we cannot keep this patient alive: if we treat aggressively, she will 'linger and suffer' and will die in 9 days time, and if we only provide palliations he will suffer much less and die in 3 days time'. PERFECT [hypothetical] PROGNOSTIC CERTAINTY.
But if they (the clinicians) go for 'palliation and death in 3 days with much less suffering' but the clinicians do not explain what is happening to the family and friends, then the family would perhaps see/believe 'they wanted my mum to die - they set out to kill her'.
That is aside from the issues around whether the clinicians can make the choice without consulting the family 'from a legal perspective', etc - this is about communication (or lack of communication) and perception.
What action has been taken Mike to address these concerning practices?
The problem, is that the guidance around 'talking to family and friends if the patient can't be asked' is very complicated, and leaves a lot of 'wriggle room'. The current consultation about 'something to replace the LCP' stops some way short of doing what I would like (it stops short of saying to clinicians that if you can't directly ask patients, then they must almost always be openly talking to family and friends) and, consequently, this problem might continue. It is also proposed that the replacement for the LCP will be presented as 'advice' and not even as 'guidance'.
There are also serious 'experience and perspective' issues: although 'talking openly and taking jointly-agreed actions' often works very well, it gets very 'messy' if the conversation is started, and disagreements result. I recently swapped an e-mail with Hugh Montgomery, who is an ICU consultant (and he was on Desert Island Discs a couple of weeks ago) and he wrote:
'The issue as to what a patient may consider 'good care' is, peculiarly, sometimes clearer when the end of life is accepted by al parties. in my experience, problems are common and thorny when the views of one or other party differ (whether that through doctors overtreating, or patients/ relatives finding it hard to grasp that 'It might not always be best to do all that can be done' in interventions beyond palliation and dignity.'
One nurse recounted how she saw a doctor hit in the face 'for taking away hope':
However, I used to discuss this with the Head of End-of-Life Care at the Department of Health, and both of us agreed that things tend to go better, if the clinicians do 'find the resolve' to keep the layfolk 'in the loop'.
There is also a complicating issue about decision-making powers, and about the term 'expected death' in a community setting:
I think things would be more balanced and better 'overall' if the guidance given to nurses and doctors was what I wrote in 'simple terms' above:
'This NHS behaviour is missing something obvious, and it is also confusing 'the patient isn't telling his relatives anything' with 'we must not share information without patient consent'.
... The simple rule of thumb, probably, is that if a wife could be asked by her husband 'What have they been doing today, then ?', then the husband should be asking the wife: but if the wife has lapsed into a coma, or for other reasons could not answer herself, then it is perfectly reasonable for the husband to put the question to the doctors and nurses, and to expect answers.'
There are even some doctors who don't tell mentally-capable patients that 'we have made you not for resuscitation' (rationale is: 'because we think attempted CPR would definitely fail, and we think telling you would upset you') - as 'because CPR would definitley fail' is an 'expert medical opinion', and as most guidance supports the idea that patients can ask for an independent second opinion, how does a patient ask for a second opinion about 'whether future CPR might work', if nobody has told the patient that 'we have made you DNACPR' ?
It is all very 'intricate' - and, currently, not properly 'balanced' between the professionals and the laymen.
The lady who contacted me previously, has recently been in contact again, and it seems I failed to understand a problem she had with NHS staff from abroad who were working in the hospital. She has a strong issue with nurses (and doctors) processed as acceptable by the NHS, and working with acute and dying cases within days/weeks of having arrived at Gatwick airport, their first time in the country (coming from Africa and Asia) and NOT having ENGLISH as their mother tongue: with insufficient English culture and language to meet patient's needs, and whose English language skills and 'culture' inhibit adequate communication with patients and relatives. I admit that I might have under-weighted that concern, even if I had picked up on it, because even clinicians who have lived in England for their entire lives, are often 'not at all open and honest when patients are dying' (and that IS an issue I bang on about). Her own words are better than mine, so the following are extracted directly from some e-mails she has recently sent to me, and I have excluded most of her 'stronger comments' about 'the NHS' by only selecting these extracts, although her expression of the way her mum's death affected her, makes it very clear how disastrous this type of NHS experience is for the bereaved (and the 'you' who did not understand, is me - these are parts of her e-mails, which it make it very clear that the consequences of the type of behaviour she experienced, are truly damaging for bereaved relatives [something I can understand from my own personal experience]):
' It is even more upsetting that you did not fully understand my issue. But the LCP is ended but that is only a name of a morphine practice, used in our case on a person who did not have mental capacity to CONSENT/OBJECT and the name, drug and dose was hidden for 6 months after the death. The issue is sickening me and better, if not accurately interpreted, to leave alone. ... This shocking DIRECT EXPERIENCE will be with me forever. ... Enough is enough! Many have lost their faith in NHS. ... Hope you get somewhere with my precise and correct info. I have personally tailed off as time has gone by but the scar is irreparable and the faith in NHS AND Any proper GOVERNMENT DESTROYED COMPLETELY.'
I hope I have explained the above adequately.
This is extracted from one of her e-mails:
'My issue was not only bad or zero communication from 95% of non British staff and locum doctors, working understaffed behind locked doors, it was mainly the issue that the words LCP or morphine were not used and that what was done was hidden. It took an unusual agonising battle of wit, endurance and tenacity to uncover that a DNR and LCP had been used -and deliberately hidden from us until 6 months after my mothers death during which time the formally absent head of dept had time to alter the medical records to allow their release.'
And this is extracted from another of her e-mails:
''I wonder, under the new light and emphasis of lack of investigating immigration/importing doctors and nurses, unchecked, how indeed my account stands today, especially if the mother tongue or culture is of so little moral value and so opposite from ours here in England.
How 'exactly' are the rules and laws enforced regarding the ethics that we do/do not enforce?
I am still not enough Internet savy to but have noted a year somewhat late that no mention was made by you of the LANGUAGE AND CULTURE DEFICIT regarding the central London case my mother suffered. If approx 90% of the staff were imported staff, all recent, within months, who and how, in the NHS system was checking the language and culture lack of communication while the heads of department and CEO were either absent or refusing to respond - for weeks and months?
That was the 'real' issue that caused the death of my mother and for some peculiar politically correct (PC) reason, it is not allowed to be 'spoken' about openly and transparently. An Asian consultant issued the DNR, a not yet employed Serbian issued the sudden dose and the so-called rare visit nurses had just arrived weeks before from Africa, via Gatwick - all within my mothers' 6 nights and with no clear intention and not one iota of the mention of morphine or Liverpool Carepath Plan.''