Exploring the meaning of 'Dignity'
I have been working as a Hospice Nurse for the past eight months now, and dignity is something I endeavour to uphold from a patient/nurse perspective, but I now want to expand on this and promote the concept organisational-wide.
I use the word 'endeavour' as I become more and more mindful that at End of Life dignity may in fact be threatened, not as a result of poor standards of care, or anything sinister, but as a result of the impact illness may have on patients and those important to them. I suppose it is this realisation that has prompted me to explore the concept further, and offer an opportunity for colleagues to do the same. My idea is to start a dignity forum in the workplace titled, 'Lets Talk Dignity', a place for healthy debate and discussion, the sharing of ideas, reflections etc......
I all too often hear, 'I have lost all my dignity', 'look at that poor man, he has no dignity left' etc, and reflect that perhaps 'dignity' is exactly what a patient says/feels/thinks it is, as opposed to a definition or concept found in a policy paper, or a theory written by a researcher/academic.
That leads me to the thought of just how important it is to foster therapeutic relationships with our patients, which may lead to the discovery of what 'dignity' means to that individual. Essentially, if we don't explore individual perceptions of dignity we are in fact making an assumption that it means the same thing to all.
It is by its very nature a complex concept, but by listening and respecting an individuals autonomy we may get closer to understanding the 'meaning of dignity'.
I would be interested to know what you think of my theory, and welcome your thoughts.
Hospice Senior Staff Nurse
Can I promote your question on Twitter, Carol?
I'll post my own thoughts, after I've had a think.
Hi Mike
If I may be really honest, I am personally not a Twitter fan. Maybe because I don't fully understand its usefulness. I find it a bit vague, and not sure if its the right platform for discussions, as often I see short messages as opposed to a paragraph? That said, I am not a total dinosaur re technology, so please if you think it would be useful, go ahead. I suppose, my dilemma is maybe the fact I take my work so seriously, but is that such a bad thing?
Just out of interest, as you also seem to take 'all things dignity' quite seriously, what is your professional background Mike? Health, law...... just guessing!
I am also considering undertaking research, but ethically challenging with EOL patients as the research population... worth a try, I do strongly believe so!
'Exploring patients perspectives of Dignity at EOL' my research proposal, which is may I add 'just an idea'. Everything starts from an idea surely...
Hi Carol,
I've just realised (I think), that I put my question earlier today in the wrong thread - it was actually for Georgina, and what I was asking about was posting this part on Twitter, to publicise the online information about the study:
Hi everyone,
I’m a PhD researcher at Bath Spa University, interested in improving the well-being of older adults (without dementia) living in care/assisted living homes. I’m currently developing a questionnaire to measure residents’ well-being so would like to share this research with you in case one would be interested in taking part.
The study has received ethical approval and involves residents, family, friends or staff providing their opinions on what is important for residents’ well-being and quality of life. Family, friends or staff can take part online and read more about the study here: http://www.cfp.cc/201la3
The questionnaire takes around 20 minutes to complete online
As for Twitter - I only joined Twitter a year or two ago, at the suggestion of a palliative care consultant who I 'stumbled into'. I asked him 'we write about the same issues - how come I've never come across you in BMJ rapid responses?' and he came back with 'I tend to use Twitter instead, these days'.
Twitter is a mixture of informative and 'totally bonkers' - it is very much a mixed blessing, but it does sometimes allow you to make useful contacts.
I got involved in end-of-life debate, after my mum's death:
https://www.dignityincare.org.uk/Discuss-and-debate/download/315/
My degrees are in chemistry, so no clinical or legal background as it happens. I'm also not very empathic - if it is a phrase with any meaning 'I think I'm a bit Aspergerish' - and while I definitely want dignity to be a core part of how people are treated, I tend to be discussing issues during end-of-life which are more easily looked at through a 'legal lens', than 'dignity' can.
I love 'Everything starts from an idea surely ...' by the way.
Maybe, you are more empathetic than you actually realise. If you were not, you wouldn't be taking the time to discuss this topic with me, and indeed share your personal experiences of your mother. So do not underestimate the power of empathy (meant with kindness as I write).
Your 'more easily looked at' themes will be interconnected in some way with dignity, quite simply because dignity involves (I think at least) acknowledging choice and more importantly, respecting that choice.
Thank you for sharing!
Carol
Thanks Carol,
I'll probably write a piece about 'how empathic I am' sometime, and post it in this thread: I'm convinced, that compared to most nurses in particular, I'm low-on-empathy and high-on-nerdiness.
What if I told you I possess empathy and nerdiness in equal measures, yes they can co-exist, I am living proof ha ha
A 'bit of humour' is critical when confronted with 'death and dying' on a daily basis, so thank you! My computer wanted to spell check 'nerdiness' I cant believe its not in the English dictionary, can you? ha ha
Have a lovely day Mike!
As it happens, my computer objected to 'nerdiness' a couple of days ago - also doing it here, now. I absolutely agree that people could be both 'empathic' and 'nerdy' - but I don't think I am. I understand your 'A 'bit of humour' is critical when confronted with 'death and dying' on a daily basis' point - in fact, I've written tangentially about it (along the lines that the patient, the relative and the clinician do NOT share the same journey: the patient's journey ends in death: the relative's journey ends in bereavement; wherever the clinician's journey ends, it can't be the same place as the relative's, because if it were, after a few deaths 'the clinician's psyche would be totally wrecked''). I was discussing 'Good Death Theory, back in 2012 here on DiC
and I think what will be obvious to most readers, is my 'nerdiness' and not 'empathy'?
Love it ......I have a colleague who has been a hospice nurse forever, well almost, and she said someone once asked her the question 'what could possibly be good about death'? when the discussion of a 'good death' came up ha ha made me think and laugh at the same time!
Still not sure on your lack of empathy....... if I come to that conclusion Ill tell you ha ha
Mike, just a few sentences in, I see you relate to 'what could possibly be good about death' ...no time to read it all just yet, must refill my fridge etc
Ill sit when I have a bit more time and read it properly....
I think i might use some of your stuff for my teaching on dignity and death, you will of course need to consider if you give me permission to share.
My day trip to Sainsburys is about to begin........
Mike, just a few sentences in, I see you relate to 'what could possibly be good about death' ...no time to read it all just yet, must refill my fridge etc
Ill sit when I have a bit more time and read it properly....
I think i might use some of your stuff for my teaching on dignity and death, you will of course need to consider if you give me permission to share.
My day trip to Sainsburys is about to begin........
Hi Mike
After reading your theory on 'a good death' I am inclined to agree with you. Overall, death is not a good thing at all. I once heard a patients husband define the dying process as a 'war zone'. That wasn't because we failed to alleviate the common symptoms at EOL, of course we did, but actually that is how it felt to him, and nobody can dispute that! That's why I choose to listen to my patients, because my perspective is actually totally irrelevant, and by listening I can sometimes alleviate their suffering, even if only for a moment. What I can not do is take away peoples suffering and pain, even I as a passionate nurse do not hold such powers! What frustrates me personally is the 'medical model' still dominates, and the psychological stuff is sometimes deemed less relevant!
Coming back to your discussion, we endeavour to alleviate human suffering, in a holistic way. This often entails support for relatives/friends, and actually I often get told 'you have made the unbearable bearable' and don't get me wrong that's a great complement, but I am under no illusion that I am somehow enabling a 'good death'.
One also needs to consider 'the current state of the NHS' and the under staffing etc
Often patients feel a hospice is actually the 'best your going to get', staffing levels are generally better (on a good day). Better nurse-patient ratio, great food ect So actually for many they may consider death in a hospice setting to be 'good' as it may be an improvement to dying on a busy ward.
I also often find that although people say they want to die at home, in reality they often feel overwhelmed with symptoms, and daily care needs, and decide on hospice care. This always comes with an element of guilt, not unlike when people say 'ill never put you in a care home'.
Coming back to the 'good death' discussion, it is of course only those left behind who can tell you from an onlookers perspective if it was a good death, how it is for the patient we will never really know!
Hello,
Does anyone know when is the next dignity forum in the London area.
Hi again Carol,
Just glanced at your most recent posts - no time to really look at them at the moment, but 'glancing' they seem to be right to me. I've decided that I don't need to write a new piece to establish that I'm much more nerdy than empathic - it seems to me, that my BMJ rapid response from a couple of years ago, pretty-much proves that I am 'nerdy and analytical':
Hi again Carol, read your posts, and nothing I can see to disagree about. It strikes me that you might find my survey/s at
slightly interesting.
Bridget Johnston has just tweeted a URL to a paper 'Dignity Through Integrated Symptom Management: Lessons From the Breathlessness Support Service':
https://www.sciencedirect.com/science/article/pii/S0885392416302974
The abstract starts with the sentence:
'Dignity is poorly conceptualized and little empirically explored in end-of-life care'
Which someone has recently pointed out, here on DiC - we talk about 'dignity' but we don't have a clear-and-agreed idea of what 'dignity' means.