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Should patients always be made aware they are nearing end of life?

Posted by:

10 March, 2014

Article:
Richards NM et al
(2014) How do patients respond to end-of-life status? Nursing Times; 110: 11, 21-23.

Abstract:

Background
UK palliative care policy and philosophy endorse open awareness, where all parties acknowledge that the patient’s death is approaching. Perceived benefits of making patients aware of their prognosis include being able to plan a variety of activities, so arguably death occurs more in keeping with their wishes.

Aim
To explore if and how information about a transition to palliative care was communicated to patients discharged from hospital who fulfilled standardised criteria for palliative care need.

Literature review
Despite evidence of a link between encouraging people to talk about dying and an improved dying experience, persistent barriers exist to entering a context of open awareness.

Method
Semi-structured interviews were conducted with 15 patients and three family carers, 3-6 months after discharge from hospital. A thematic analysis was undertaken.

Results
Despite indications that participants might be nearing the end of their lives, most were unaware of their prognosis and showed little insight into what they could expect from the trajectory of their disease.

Discussion
Patients can be reluctant to gain knowledge that requires them to face the imminence of death. This can create tensions for nurses about how they relate to and communicate with patients facing incurable illnesses.

Conclusion
To ensure timely access to palliative care, new and innovative ways of delivering palliative care are needed, which do not rely on the ideologically based assumption that awareness can and should be encouraged in all cases.

What do you think?

  • This research found that most of the patients they interviewed were unaware of their prognosis, why do you think this is?
  • Should patients always be told that are nearing end of life? Are there some situations when this would not be appropriate?
  • How can a patient’s reluctance to accept that they are dying impact on the care they receive?

Readers' comments (25)

  • Absolutely .......I don't know why a person shouldn't be aware of their own fate.

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  • strange, we always managed before. why are do some many of these old issues keep coming up? nothing wrong in discussing them, of course, and finding new and better ways of doing some things, but there are others one wonders why they have suddenly become new issues that people seem no longer able to handle!

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  • These issue keep coming up because they are important for those who are dying and for their relatives and clearly we are not dealing with them as well as we could be. Everyone has the right to know their diagnosis and prognosis, however, not all patients can cope with that information. It is the duty of health professionals to identify if the patient is ready to hear this news. This requires good communication skills, compassion and understanding, and acceptance that if the patient is clearly indicating that they do not want to know, then this is a coping mechanism that requires careful management.

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  • It can get very confused if the patient, and the family, don't know the patient is dying.

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  • michael stone

    A topic I am up-to-speed on: to save repetition, I’ll use web-links and hope they work !

    I’ll start with:

    http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj=viewThread&threadID=692&forumID=45


    The first questions I discussed in there, were ‘'what does terminal mean' and 'do terminal patients, need to be told the detail of their prognoses'.’

    The point I made, was that death affects [continuing after death] wider-life issues, so:

    'End-of-life patients, must be given the opportunity to take heed, even if individual patients choose not to take heed'.

    There are fundamental issues afflicting the ‘discussion of the dying bit’ – see my post on the BMJ website:

    http://www.bmj.com/content/347/bmj.f4085/rr/652862


    Moving on to the consequences of not telling relatives that their loved ones are dying, under the title ‘Should hospital nurses and doctors be keeping the relatives of patients informed ?’ I posted a piece about that, roughly a week ago, at:

    http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?forumID=45&obj=viewThread&threadID=721


    The post pointed to by the link directly above, points out that it was prompted by an unsolicited contact from a person who had a very upsetting experience when a parent died in hospital, and recently I’ve been in the somewhat weird situation of acting as an intermediary for a reply from Bee Wee, who is leading on the ‘Liverpool Care Pathway Replacement Work’, to that person. Bee sent an e-mail yesterday, and this is extracted from it – it isn’t controversial, as it is clear that this was the position of the Consultation Document:

    ‘When a person’s condition deteriorates or change, they must be reassessed and a judgement made about whether that change is potentially reversible or whether they are likely to die in the next few hours or days from their condition. Decisions about what actions to take, e.g. further tests or treatment, focus on comfort care, etc. are made depending on the clinical assessment of the person, and discussions with the person (if they are able and wish to discuss) and their family. As a clinician, I would always want to review those decisions and discussions so that plans are modified as necessary. These are often not black and white situations, and the level of uncertainty about what’s likely to happen is something that clinicians have to learn to communicate and discuss properly with patients and their families. In my experience, most people can understand and accept that there are uncertainties (even if they find it hard), provided this information is shared and discussed with them. In the Alliance’s description of what good care in the last days to hours of life should look like, communication and involvement in decision making are both important priorities.’


    That bit, was Bee’s reply to a phone call via ‘Bee’s office’ that this upset person had made (the person spoke to someone, who passed details on to Bee: Bee and the person did not speak directly), but I had sent an e-mail to Bee before the phone call, telling Bee that I had given the person a phone number for Bee, and I commented in that e-mail:

    ‘So you might get a phone call to that number – she is really disturbed by what happened to her parent (and as usual, to my mind it stems from the clinicians not properly discussing things like DNACPR and LCP with the family – as her mum was long-term demented, you would think when such a patient is admitted those conversations would definitely happen, but apparently not)’

    Bee also commented on my comment in the e-mail:

    ‘I agree with the point you make, Mike, that it is often the lack of discussion (or perhaps the inadequacy of it) that is often at the heart of what goes wrong in decisions and actions taken.’






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  • michael stone | 11-Mar-2014 1:48 pm

    Monologue alert: these boards are not here for you to endlessly list email, phone calls and other communications you've had.

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  • Anonymous | 11-Mar-2014 8:43 pm

    even persistent self-interested and self-important Trolls?

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  • michael stone

    Anonymous | 11-Mar-2014 8:43 pm

    Just out of interest, are you the same person who told me 'that your views are irrelevant, because you are not a nurse [and hence don't know what you are talking about]' ? And the person who explained to me that 'I believe my professor, because he knows what he is talking about, unlike you ?'.

    How exactly does my position/views, coinciding with the views of people like Bee Wee, fit into that ?

    Read the argument(s), please - a decent analysis should stand on its own two feet !

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  • michael stone | 12-Mar-2014 11:15 am

    No, I've only addressed your incessant postings quite recently - following an intervention from another poster.

    Everyone has the right to express their views, but you seem to use this board as an extension to your professional interests in that you endlessly list communications you've had with others that are largely irrelevant to anyone other than you.

    Personally, I don't care who you've emailed or telephoned and whether they agree with your position or not. Post your views by all means, but don't feel as though you have to qualify everything with endless lists and links.

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  • Anonymous | 12-Mar-2014 11:58 am

    totally agree with anonymous above. it just appears as name dropping to try and show how important "I" am. Who cares, other than "Mr Me, Me, Me" and who is in the least interested. I used to read and comment with great interest as well as some pleasure here but now get fed up with seeing all these lengthy comments and views from MS on almost every single page, and have all but given up. If you do comment you usually have the right to some vacuous and very self-opinionated response from MS who has no knowledge whatsoever of nursing care or the functioning of the profession, and although lay views and opinions are always welcome those of MS are excessive and bordering on the obsessive and often disruptive to the threads whereas others are interesting and in greater moderation. Michael Stone is only interested in Michael Stone's own personal agenda and own expert opinion.

    So much for NT sales and readership, each to his taste, and he does have his little band of supporters and those he follows like a little shadow, but there are plenty of other quality professional journals out there to read.

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  • michael stone

    Anonymous | 12-Mar-2014 11:58 am

    Anonymous | 12-Mar-2014 12:46 pm

    Well, I suppose this is one of the disadvantages, of people not posting under a posting name.

    I only 'include comments from senior NHS folk', as a riposte to the attacks I was getting some time back, that 'because I'm neither a nurse nor a [medical] doctor, I can't understand EoL stuff'.

    Anonymous | 12-Mar-2014 12:46 pm

    My [obsessive] interest is indeed concerned with improving end-of-life behaviour - nice of you to describe my opinions as 'expert', though. Even if you had previously claimed that I don't know what I'm talking about (perhaps you've decided that I usually don't know waht I'm on about, but that just for EoL I do know the subject - I am unsure).

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  • michael stone | 13-Mar-2014 2:36 pm

    the 'expert' should have been in inverted commas. you are the only one who considers yourself an 'expert'. your comments indicate that you are clearly not. you may know the subject from a lay point of view and from one or two personal experiences but it has nothing to do with professional experts who encounter and have to cope with death regularly as part of their work and where every single one is very individual and different. it is very irritating that you are totally incapable of making this distinction and only appear to be interested in your own opinions and listing all the people you sent e-mails to. When I received mine from you I chose to ignore them and reported it to NT!

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  • michael stone

    Anonymous | 13-Mar-2014 9:19 pm

    Thanks for that. I'm going to send that comment to Bee Wee, for a second opinion.

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  • michael stone | 14-Mar-2014 11:47 am

    who on earth is Bee Wee? name dropping again?

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  • i believe that if they want to patients should informed of their prognosis and what to expect at the end. i disagree with the result of the research. i have 3 close members of my family die of cancer all of them were aware of their prognosis and how long they had and because of this they were able to arrange where they wanted to die one even discussed his funeral arrangements with his local vicar.

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  • michael stone

    Anonymous | 13-Mar-2014 9:19 pm

    Anonymous | 14-Mar-2014 1:05 pm (answer to your question happens to be in here as well).

    I might as well post details of some more e-mails.

    I asked Bee whether your views about my grasp of EoL issues were shared by Bee – I sent my e-mail at 13:49 yesterday, and it started with just ‘Bee,’. I got a reply from Bee, which started with just ‘Mike’, at 14:08 (that does tell you something, of itself). Bee informed me:

    ‘It certainly isn’t my view. There are areas where you and I might not entirely agree, but that is the whole point of discourse and discussion. Your comments do make me think – sometimes, I don’t have time to reflect or respond, but ..’


    Bee is National Clinical Director, End of Life Care for NHS England, and she is also chairing the alliance that is working on the replacement for the Liverpool Care Pathway – to be frank, I find it interesting that Bee (who does read my stuff) doesn’t dismiss me out-of-hand as ‘not knowing what I’m on about’, but you, who does not read my analyses, does that.

    And by the way, I didn’t say that I was an expert. I simply claim, that I understand enough about EoL behaviour, to sensibly discuss it. Very few people in EoL claim to be ‘an expert’, except possibly for very narrow parts of it.

    What Bee understands, and I understand, is that you only come to understand more about things, by discussing them with people whose views are [at least initially] different from your own – being dismissive of lay input, simply because it is lay input, isn’t the way to improve anybody’s understanding.

    Anonymous | 14-Mar-2014 3:43 pm

    I agree with you - the problems come from the 'if they want to'.

    You can get people who get very upset if their prognosis is made clear to them, but you can also have situations when patient and family don't realise that the patient is 'dying', which can lead to all sorts of complications and bad memories post-mortem. It is like many things in end-of-life: many people understand the problem, but defining 'correctly-balanced behaviour' is tricky.

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  • michael stone | 15-Mar-2014 10:37 am

    I would suggest your Peewee hasn't followed your thread here and is rather gullible

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  • michael stone

    Anonymous | 15-Mar-2014 11:02 am

    Calling Bee 'Peewee' is plainly offensive.

    I suspect that Bee isn't following this NT thread, but she is very aware of the 'should patients always be made aware' issue, and the related 'should family always be told' issue.

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  • michael stone
    michael stone | 16-Mar-2014 12:37 pm

    I queried what bee-wee or peewee or whatever you wish to call it higher up and got no response from you. having just typed another version of the word my spell checker suggests peewee of the word has nothing to do with being offensive. you could do with a little talk on the subject yourself!

    "...but she is very aware of the 'should patients always be made aware' issue, and the related 'should family always be told' issue."

    so are most sentient nurses and other medical professionals doing their job so I suggest this is a person you refer to and just another on your e-mail list which has little to do with the current discussion.

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  • Why do some of you feel so threatened by Michael Stones' posts. Everyone is entitled to an opinion. In your academic training, do you not list references? This is how we learn, have an open mind and remain transparent

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