All posts by Catharine Jenkins

The value of human life

Hospice Cares For Terminally Ill During Final Stage Of Life

After reading Simon’s blog post last week I got thinking about why his ideas made me feel so uncomfortable. I can’t help agreeing with many of his points, but when you add them all up – well, I felt there is something in the middle of it that is a larger issue, and one that I think we in nursing need to get to grips with. 

In trying to say how we feel about the value of human life – our own and others –  it is hard to articulate it without using spiritual language – there’s nothing wrong with that, but if you are not coming from a spiritual perspective then an alternative is required.

Being human is, I feel anyway, more than just rights and responsibilities, and more than comparing ourselves to a ‘beloved pet’. Maybe it’s also about acknowledging how difficult – and in fact impossible – it would be to ‘press the button’ on another person’s life.

In this situation, the difficulty would not be for the person leaving, but for those left behind. What do we become once we have agreed to sign away another person’s life, even if they themselves ask us to do so? Does this mean that life is only worth something when we are intellectually and functionally 100%? What does this say about our relationships with other groups of vulnerable people?

To me, this discussion is not just about what a person loses when they have dementia, or another life-limiting and damaging condition, but about the culture which we live in, and which it is our responsibility to guide.   

Hospice Cares For Terminally Ill During Final Days

The ‘right’ to say you want to die in certain circumstances does open possibilities for foul play, as Simon suggests, but more importantly, I believe, it damages our sense of community, our cultural heritage and recognition of our inter-dependence. Individualism seems to be increasingly prioritised in our society and in nursing itself – the trio of autonomy, independence and intellectualism seem to be valued above other qualities with little argument.

To me this route ignores the reality that we are all strong and vulnerable in different respects and at different times, all have hidden or visible disabilities, all work better together than we do apart, and all are damaged when one (and who’s next?) chooses suicide or euthanasia.

 

Instead, we should be campaigning for inclusion and for investment in sensitive provision of excellent standards of care. For those who need it now, and for those who are planning ahead, we shouldn’t be assuming that lack of intellectual ability makes us less of a person, and thinking about how to ‘jump before we are pushed’.

 How can we recognise and celebrate the individual differences that make us all who we are, in different parts of our lives, as part of a caring supportive and accepting community with mutual interests at heart?

 

(all images from Picapp – click image for info re source etc)

Inappropriate?

Often in practice and in teaching, there are situations where the practitioner or tutor makes a judgement about someone else’s work. Sometimes the person has a strong feeling that the other has misjudged something, and sometimes, or maybe often, this other person’s decision is described as ‘inappropriate’.

Things that are inappropriate include jokes, touch, remarks, modes of dress, approaches to others, laughing at funerals. In the language of teenagers, ‘so cheeky!’ but in the language of mental health professionals, ‘inappropriate!’

The message, whether casual or serious, is that the person has transgressed – behaved against cultural or professional norms. Within that though, is an unspoken message, that the person calling ‘inappropriate!’ has the power to decide what’s ok, and what’s not ok, and what’s more, my way is, yours isn’t.

To me this is the exact opposite of how we should be approaching both nursing and teaching. This word has the power to exclude and disadvantage, put the other person on the wrong foot, put one person in a one-up position, the other one-down. Surely this word is the most inappropriate word for us to be using?

A funny joke?

 
 

A funny joke?

 
 

That’s the other problem with it. It doesn’t give much clue as to what was wrong. So when I say the word itself is inappropriate, you only have the barest idea of why I say so. Me saying it, and being a teacher, is that enough? Both values and evidence are implied, but if I don’t feel like explaining, it’s implicit, well, I don’t have to.  I don’t have to account for myself. Well I do and so does everybody else. This word is first of all, undemocratic, and secondly disempowering.

It doesn’t tell us anything, apart from the power differential. So if something is inappropriate, should the other person just guess why? Of course not! So if I was to go into class in a mini skirt and low cut top, there would be reasons that wouldn’t be a good idea. It would be distracting from the messages I would be trying to get across, and could undermine the mutually respectful relationship I would be hoping to establish in class. Perhaps I would also be modelling (I don’t mean this in any fashionable sense) a mode of dress that could lead to difficulties in a clinical area, where service users need clarity of boundaries. But I can imagine if I were to dress like that, I would hear that it was inappropriate. I might realise that I was in the wrong but would not have clear guidance on what was not ok about my behaviour, or how to put it right. So my second point is that inappropriate is lazy.  Teachers need to clarify things for students, likewise nurses for service users, it’s part of our accountability and duty to be there for others’ development. It’s what we’re paid for, and not to do so is fraudulent.

So values too are undermined by use of this word. (I’m getting sick of writing it now, and it’s also quite hard to spell.) By implying something is wrong, we are clearly calling on our value system. I shouldn’t wear revealing clothing in class – but who says, and why not? Well, it would make other people uncomfortable, distract them, and undermine my professional position and relationships. It wouldn’t be fair.

Breakfast on the commode anyone?

When I was a student nurse one of my ‘inappropriate’ decisions was to say (perhaps rather too angrily) to a nursing officer (nowadays a modern matron) that I was not ok about patients eating their breakfasts while sitting on the commode. The sister was very clear to me that this behaviour was inappropriate. Mine that is.

So here the word was used for discipline – in this profession you don’t step out of line, this is the hierarchy, this is your place. The act is not separated from the person, there is no option for inclusion, ‘what you did was not ok, but you are’. The cultural element implied means that the person feels that if you want to be one of us, you have to act just like us. There is not space for non-conformity, alternative opinions, discussion. To me this system is one of the most damaging aspects of nursing, the risk that we reinforce what’s ok and not ok in relation to a vague but strong idea of appropriateness which is culturally reinforced through generations, but because not explicit, is difficult to challenge.

I did learn from this, that if you want to change things in the NHS, it’s better to do it from the inside. At that moment I felt very much the outsider, frowned upon from all quarters. Yet really, the behaviour that was inappropriate here, people eating food on top of … well do you want to tell me I’m inappropriate if I write it? And of course inappropriate doesn’t even cover it – humiliation  injustice and dehumanization, this practice arose because of understaffing and all round under-resourcing. So not only does the word not deal with the issues, it colludes with the cover-up of what’s really wrong.

Equal voices and respect?

So, I’m asking you, my colleagues as teachers, nurses and nurses to be, let’s sack this word, it is harming us, and harming those we are planning to help. It’s disempowering, excluding, unjust, makes things unclear, and contributes to a negative nursing culture. Instead we need to take the long road. This will mean stopping to think about our values, norms and expectations, and whether we can justify these, and taking the trouble to account for ourselves. In the end our destination will be fairer, more equal and inclusive, a nursing culture where we can all challenge supportively and take opportunities to develop as ourselves as a person and a professional, and be there in the same way for other people, aiming for equal voices and respect.

 

Images from Flickr as follows

 ‘I’ Picture by Marron Glacé on Flickr

‘A funny Joke’ Tootdood

The Dementia Care Strategy

In my blog I’m going to write about dementia, this is because that was my main speciality in practice, and because I have a module launching in a couple of weeks that focuses on dementia and so it is uppermost in my mind.

Leonardo DaVinci
Old Man with Water Studies: Leonardo DaVinci

Last year I was thrilled (yes, I really was but didn’t let it show) that the Government was planning to release a Dementia Care Strategy and got quite excited that suddenly my ‘poor relation’ interest was going to be top of the news and lead to better funding and public attention, and also give me lots of new material to boost lessons and discussions in class. It was like as a child waiting for a particular present which isn’t exactly promised, but you feel there’s a good chance it will turn up. As you may know, the Strategy wasn’t published before Christmas, perhaps the Government had other things to deal with, but from my perspective, and others in the field and those who have Dementia, and their families, it was a disappointment.

We do know roughly what the Strategy might contain, because there’s been a draft, and the themes are likely to be raising public awareness, early recognition and improved care. One of the things the strategy was criticised for was a certain vagueness about any money to support the recommendations. Now I’m getting anxious that not only I won’t get the present, but that if I do it won’t have any batteries.

This is just a little corner of the world, and it’s not just about being a spoilt brat when there are so many other pressing concerns – older people, at risk of dementia, or who already have it, don’t usually have high expectations, but maybe this time it will be their turn (and with them all the nurses and other staff involved in their support) to beam with pleasure when they unwrap the parcel. We’ll have to wait and see.