End of life care: looking through a different lens

Guest post by Joanne Atkinson, Director of Programmes, Northumbria University to coincide with World Palliative Care Day 2015.

When reflecting on my professional journey I often ask myself how did I get where I am today? The thing is your personal story has great resonance for you as a professional; this is an insight into my doctoral journey.

I have worked in palliative care for many years, firstly as a Macmillan Nurse in the acute sector, and then at Northumbria University teaching palliative care. Commencing a professional doctorate I had a stuttering start, but eventually arrived at where I am now with my research which is a study using Foucauldian discourse analysis. My research explores the influence and impact of emerging, competing and overlapping discourses on practice in end of life care, and provides insight into the discursive tendencies impacting on end of life care practice in the hospital setting.

Recent years have seen unprecedented media interest in end of life care, and the emergence of powerful discourses that influence health care professionals delivering care. My research focusses on the tensions, challenges and possibilities that emerge from this intersection.

You may recall some time ago the tragedy that occurred in Greater Manchester when Harold Shipman, a GP, killed his patients. The media coverage that occurred as a result of this has had a significant impact on the way in which doctors and nurses caring for people at the end of life. The public and other professionals questioned the prescribing of opiates for pain and symptom relief. This cultured the germ of a research idea. So my research journey started.

As I commenced my professional doctorate the media frenzy related to end of life care and the Liverpool Care Pathway developed, and I found myself at the cutting edge of end of life care. It is fair to say that I was taken aback by some the media outputs. 

I undertook an analysis of artefacts from journalistic press not tabloids (although this did include the Daily Mail!) and terrestrial television (factual outputs). Initially this was to be over a period of six months, but this was extended due to the profile of end of life care at the time. In addition tape-recorded narratives were taken from four consultants and six clinical nurse specialists working in palliative care, and a cancer centre. Participants recorded the narratives over a two-week period.

The media artefacts and narratives have reaffirmed the metaphorical language utilised when discussing end of life care, and highlighted the impact that the sensationalisation of end of life care has on practice, instilling a moral panic that both disables and fuels the need for change. Prominent discursive formations have emerged related to the power of representation and the impact on practice when caring for people at the end of life.

Back to my personal story which is inextricably linked with the research journey, having life happen throughout this research has no doubt enriched my understanding, but holding a very old man’s hand when he thinks he is going to be killed because he is so ill makes the impact discussed above so real especially when that very old man is your father.

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Photograph (5138623107_b05613223b_o) by More Good Foundation via Flickr.com © 2009: https://www.flickr.com/photos/moregoodfoundation/5138623107

The 'C' Word VII: Caring (for carers)

Posted by Jenni Remnant

Last month I attended ‘Caring for carers: developing good practice for carers in Newcastle’. Over 130 people were in attendance -  a mixed bag of commissioners, health and social care providers, third sector and voluntary organisations, and student representatives from both Newcastle and Northumbria University. 

The day began with acknowledging the scale of the ‘problem’. Guy Pilkington, Clinical Chair of NHS Newcastle West Clinical Commissioning Group described the issue as ‘under recognised, under supported, and under resourced’ in his opening talk. 

We went on to learn from Ewen Weir, director of wellbeing, care and learning at Newcastle City Council, that a recent study from Leeds estimated the national value of the free labour of informal carers per year is £119 billion. He asked us to imagine if informal carers around the country went on strike, and suggested to us that if informal care ceased, the system - which is already ‘creaking’ - would fail.

Throughout his talk Ewen drew on his own experiences of caring, and described sometimes emotionally, how despite his expertise, he struggled to navigate the system when attempting to access care for a family member. He told the audience that the issue of informal care is ‘ignored at our peril’ and explained that it is expected that by 2017 we’ll reach a tipping point, where demand will outweigh supply.

Atendees were introduced to the numbers in Newcastle according to the 2011 census. We were informed that of our population (279,100), 27,644 reported that they provide unpaid care: 6822 of these for upwards of fifty hours per week. As might be expected the emotional wellbeing and mental health of carers was considered a public health concern, and in the group work the physical dangers of some carers’ situations were highlighted as risky.

‘Open Clasp’, a local theatre company, gave us a further reality check. In two brief scenes they portrayed the story of a carer who ends up putting her mother into a care home. Two actresses showed with painful clarity the difficulties faced by unpaid informal carers and paid care assistants. It was difficult to watch and - judging from my experiences, and the experiences of people close to me of both caring roles - totally accurate.  

Your Person Centred Plan

We discussed throughout the day the introduction of the Care Act (2014), that is said to be ‘built around the carer’, provide more clarity and put carers on an ‘equal footing’ with the ‘cared for’. A diagram was used to illustrate this, which for those who know, looks very similar to illustrations of person-centred planning (see diagram above). This is where the person in receipt of service provision is placed in the middle and a plan of support is created to surround them. It was interesting in this respect to visualise this model, whereby someone with a person centred plan might be being cared for by someone else with a similar service plan. Could all this ‘planning’ actually get in the way of the caring?

Another interesting feature was the lack of discussion about the ‘cared for’. I have been inclined to argue (evidenced in past blogs) that while disabled, ill and older people are chronically undervalued by society, it doesn’t seem beyond the realms of imagination that the people that care for them might be undervalued. That said though, feedback was given to us that the top three issues for carers, as identified by carers, were: their mental health and wellbeing, their emotional health, being able to have a break, and accessing information.

I looked forward to when the audience had the opportunity to put questions to a panel which included commissioning representatives, a carer’s champion GP, Council representatives and Katie Dodd, the Chief Executive of Newcastle Carers. The questions were kind and focused on shared/combined budgets between clinical commissioning groups (CCGs) and local authorities and information sharing, in essence, the nitty gritty application of rhetoric to reality. Although, following these questions, all parties seemed to work on the assumption that the energy in the room would be maintained and turned into action. The inappropriate care responsibilities placed on young carers was a hot topic throughout the day, and one attendee asked: ‘what is an appropriate caring responsibility for a young person?’ to which the answer was that being a carer is always an inappropriate role for a young person. The time they spend caring should be the time for their education, learning and growing. Something we could all agree on.

The day held some ideological issues for me. I struggled with discussion of carers, without the voice of the ‘cared for’ (although I find this descriptor in itself uncomfortable). We also very infrequently visited societal and systemic issues beyond just care, such as the undervaluing of the ‘cared for’ that I mentioned above, as well as issues around class and gender.

The day scared me, despite my previous experiences and reading around the subject, I had not understood the pressing public health concern that the care of carers represents. I am genuinely terrified by the implications of this. People are devastated by the strains of informal caring and a seemingly impossible system - it can be agony - and this is before demand outstrips supply.

The day motivated me, the use of the theatre company was inspired, and their agreement to be involved suggested a world of potential in terms of research and participant engagement and knowledge exchange.

There’s not much conclusion to this other than to acknowledge that a health crisis looms, in a context of cuts, closing third sector and voluntary organisations, and shrinking resources. Research will have a role, and probably more than ever we will have to think intuitively to keep up with developments. Certainly the practical application of the Care Act from April 1^st and its impact will be one to watch.

The 'C' Word VI: Crisis

Posted by Jenni Remnant and Libby Morrison

The Age UK Care in Crisis Report 2014 highlights the problem in Health and Social Care across the country with cuts in real terms; most councils are now only covering critical care criteria, so that those people with moderate needs will not be entitled to help.

Newspaper headlines shout out about the looming national crisis in care and public health for the elderly, and particularly the ‘ticking time-bomb’ of dementia. The number of people living with dementia looks set to rise year on year. How will our health and social care system cope with this – is crisis inevitable?

What perhaps isn’t highlighted is how, as with any crisis, it is a collection of individual experiences of people living with dementia and their carers.


An aged but blank piece of paper - having all the experience and history, but none of the words - because that's
 what dementia and Alzheimer's patients can seem like. It's there in the book, but you can't read it off the page.
 

The following diary extract is by someone recently caring for her elderly parents. Her mum was the main carer for her dad who was in late stages of dementia. Her mum had refused most offers of help as he was ‘HER husband’ and it was ‘HER job’ to care for him. She had become increasingly tired, and confused herself. The extract covers one weekend in crisis.

Friday

4.30pm
I went round to Mum and Dads to bring them some cakes I had made. I was met with a scene of chaos. Mum had packed up suitcases and bags which were stacked up in the living room. "What are you doing Mum?" She replied: "We don’t like this house, we are going back to our old one." I tried to explain that she couldn’t go back to her old house; they had sold it 7 years ago. There were pills in different bags, piles of notes and coins, clothes, rubbish etc. Dad was agitated of course, pacing up and down and making his ‘um um’ sound. Oh god what to do – Jessie is due back from school, the dog needs walked, I have a conference to go to tomorrow – I unpack all the bags and put everything away, make them tea and toast and promise to come back. Beg Mum not to leave the house with Dad. Run home make tea for Jessie, and walk the dog.

Dad once led a campaign to save the local library – and succeeded.

6.30pm
She's packed all the bags again and says her and Dad are leaving the house. She has drunk some whisky and possibly taken her sleeping pill. If I phone the GP or 999 they will probably take her to hospital – what then for Dad? He needs 24 hour care – where would he go? I have no space in my house and I need to care for Jessie and (just as an afterthought) go to work tomorrow! How can I do that – how can I not? If I don’t go into work I won’t get paid (care work – poor terms and conditions – ironic!). But the thought of Dad getting sent to any old place in an emergency, scared and alone, I can’t do it. Maybe if I can get them both to bed and to sleep, Mum might be better in the morning. Phone my sister and aunt to see if they can help tomorrow while I go to work. Ask my friend if Jessie can stay over with them tonight. Go to make a cup of tea – there is urine in the cutlery drawer – Dad has taken to peeing randomly in unexpected places. Clean out drawer. Make tea. Dad makes his ‘um um’ noise rhythmically and noisily – it drives me mad.

Dad was a school governor. He fund raised and campaigned to get new facilities and buildings for the local school.

10pm
They are both in bed (for how long is anyone’s guess). I make up a bed on the sofa and write this diary. I can’t sleep, although I am very tired.

3am
Dad is in the kitchen – peeing into a pie dish in which my aunt had brought them dinner yesterday. I clean up and lead him back to bed. He doesn’t object (thankfully).

Dad used to play tennis and rugby and was a big football fan.

Saturday

9am
My aunt arrives so I can go to work. Mum is a little better, seems less confused and has slept well. I hide the whisky before I leave. My sister and aunt go in to see them 3 times today. We have agreed to try and manage the situation until Monday, when we have a pre-arranged meeting with Social Services anyway as problems have been mounting over the last few months.

Dad set up and ran community education classes for local people.

6pm
Things are a little calmer tonight. Mum is clearly still confused but more reasonable. I cook them both tea. My aunt phones for an update. She says: "I didn’t think my toad-in-the-hole was that bad" when I recount the story of the pee in the pie dish!! We both laugh at that. But then I find myself in floods of tears – go upstairs quickly so they can’t see.

Dad has a glass plate which was presented to him for donating blood 75 times – there is a little certificate too.

9pm
I have given them dinner and we have watched a bit of telly. Mum doesn’t seem to know where anything is in the kitchen. Should we phone the doctor anyway? They will try and get us to bring her in to see them (I know of old). But that means bringing Dad and that means…….. oh let's leave it until tomorrow.

Dad loves singing and all sorts of music. He was once a choir boy in a big church in Edinburgh.


This is only the briefest of insights into the personal dimension of the impending dementia crisis, but in this limited glimpse at the nuanced and emotive narrative, it is already painfully obvious how much of a challenge public health professionals and researchers, and the health and social care structures in the UK have on their hands.

The C word V: cooking

Posted by Jenni Remnant and Libby Morrison

We all know that two key elements of public health are what we put in our bodies (food, alcohol, cigarette smoke) and the environment that surrounds us.

When you’re a carer, to a point, you can often find yourself responsible for what someone else consumes, and the effect the environment has on them. Quite a responsibility.

And the way, as carers, we respond to this responsibility is incredibly varied.

Service users in care can be fed unhealthy and highly calorific meals through a desire to ‘mother’ and ‘feed up’. Many mental health service users I’ve worked with live on ready meals (my inspiration for the topic of my Msc dissertation last year) which have been found not to fulfil dietary requirements suggested by the Food Standards Agency.

Though I hate using the word, and emphasising that this is only in my experience, there are a number of carers out there, both informal and paid, that can be quite ‘mumsy’. Meals are often very traditional, and full Sunday roasts with all the trimmings are sometimes enforced, even in single occupancy services.

I have worked with a number of service users with high staff ratios due to ‘challenging behaviour’, and they have been quite similar: the service users are often overweight. This is problematic in terms of the health of the service user and the carer – the regular violence that is often an acknowledged part of a service user’s communication can lead to a carer having to deal with 20+ stone of angry person.

  

In one circumstance, a plan was formed based on improved health outcomes - for the service user and staff involved. All the full-timers at this service were given a specific responsibility, and mine was ‘food and exercise’. I downloaded a copy of the Bristol stool chart (a carers best friend), booked our service user an appointment with a nutritionist and started to write weekly shopping lists and menus. We identified, and were supported by the nutritionist in our assertions, that our service user was heavily constipated, and this was causing them some distress and was likely to be contributing toward some, if not all, of their violent behaviours.

Putting together a healthy living plan was interesting. One of my colleagues was a supremely talented cook, and made unbelievably delicious food, but had a very different idea of what ‘healthy’ was to me. Something I’ve heard a lot at work, and which my brother now believes as gospel, is that pasta is healthy - in any dish and any context. Divine though my colleague’s macaroni cheese looked – it had three cheeses in, butter and sometimes even cream – I’m not sure it ticked all the nutritional boxes one might hope in a meal, and might also go above recommendations in terms of fat. And the portions! Portions so mammoth you’d wince to look at them.

So, very slowly, we started introducing more fibre into the menu, and green things; while also limiting, but not removing, gluten and sugar. There was a rule that every meal must have a minimum of three natural colours in, not including white, beige or brown. I should note here, that this service user, as with most of the challenging service users I have worked with, was non-verbal – and only provided very limited feedback.

There was a lot of criticism. The most common one was that the service user was being made to follow a vegetarian diet without consent. Which I’m afraid I mostly rebutted with ‘so at what point was their consent gained to eat meat?’. Though actually the new diet did contain meat, just far less than before.

Some of the team thought it was wrong – that this person had a life with such few pleasures in it, bar eating, that it was border line cruel to take that away. I found this difficult, because I used a lot of recipes and meals that I ate myself, and felt that any criticism of the food served was a criticism of my personal lifestyle. But it also contained so much assumption – how would we know what this person preferred? We tried very hard to see if there was any difference in the gusto with which a piece of carrot was eaten or a piece of chocolate – and could find none. The only discernible preference, as I’ve often found in services with adults with sensory impairments, was for something with a bit of crunch.

This service user often stared at sweet treats in shop cafes or by tills on the way out of shops (why is it ALWAYS huge mounds of cake? Or chocolate?). Often this would happen and someone on the staff team would say ‘they’ve seen it now; we’ll have to get it’. This service user very soon came to realise that this was an efficient way to get food – because of this we couldn’t go through the checkout with them, without some kind of calorific edible having to be bought and consumed every time. The combination of ‘guilty checkouts’ and staff anxiety ‘created’ this negative pattern of behaviour, which in turn impacted on the healthy eating regime that other staff were trying to implement. This resulted in the loss of the daily interaction of buying groceries.

Eventually, when the team pulled together, with compromises made on ‘both’ sides, the service user lost 3st 4lb in a year, episodes of challenging behaviour went down from 4-8 per week to 1-3, and bowel movements were frequent and far less explosive than they had been. Happiness is a non-explosive bowel movement. The social interaction aspect of grocery shopping for this service user was hugely limited – and at times the staff team totally and utterly divided.

There is no right and wrong in this anecdote. I can say hand-on-heart that I know for sure that the staff team all wanted what was best for our service user; we all just had very different ideas about what ‘best’ was.

Policy within care is full of personal outcomes that centre on choice and independence, which can make public health interventions less accessible. Especially in the example given above, where the service user was written out by our models of ‘best interest’ decision making. I certainly don’t have a substitute model. A significant public health issue is how to engage with carers. Carers can sometimes have absolute control over another human being, no matter how we dress it up to suggest otherwise. How do we make sure that clear public health messages are being communicated and instigated by carers without further surveillance and pressure being placed on an already incredibly pressured role?

The C word: care

Posted by Jennifer Remnant & Libby Morrison

I am a carer. I currently work on a ‘casual’ (another ‘c’ word!) basis for a mental health company. Prior to that, I worked chiefly with people with learning disabilities, and also spent some time as a PA to teenage twins with a physical impairment. Being a carer is hard work. Hard, underpaid, undervalued work. It reflects the emptiness of the rhetoric that society (and academia?) uses for service users, and the workforce that supports them. Being a support worker/care assistant/health assistant/personal assistant/care worker can be emotionally and physically draining. It involves the basics; knowledge of food preparation, hygiene and cleanliness and personal care in predominantly tiring shift patterns. If you’re going to attempt to work through Maslow’s hierarchy of needs (which I try my best to do – though it’s a mostly ideological attempt) you need to know how to keep another human being safe, how to feed them and how to keep them clean, whilst also offering service users opportunities to make real choices and where possible maintain personal autonomy, eg; ‘Would you like a piece of cake or an apple?’; ‘Would you like to be obese?’. Carers earning as little as the minimum wage are expected to make difficult and often quick decisions to support service users (often with complex needs) – when trying to balance health and safety considerations against individual choice and autonomy. 

One service user that I used to work with many years ago in a mental health service particularly tested the team I worked in; a typical exchange would be something like this:

Me - ‘Can you go to the toilet please?’

SU - ‘the toilet?’

Me - ‘yep, the toilet’

SU - ‘what for?

Me - ‘to see if you need to go’ (this person is regularly doubly incontinent )

SU - ‘what happens next?’

Me - ‘lets just take this one step at a time’

SU - ‘will I get stuck?

Me - ‘no you won’t get stuck, you didn’t get stuck last time, or the time before’

SU - ‘where do I need to go?’

Me - ‘the bathroom’,

SU - ‘the bathroom?’ (like that is the strangest thing he’s ever heard)...etc.

About 45 mins to an hour after first asking him, he might be on the toilet, he might not. He might go he might not. He might say he can’t, and then when you explained that you had other residents you needed to see and returned to the office, he might follow you there and urinate and defecate there in front of you. Or in the kitchen. Or in the corridor. Which despite not knowing either way, felt like a dirty protest – though in his defence, from macro to micro levels, there was a lot to protest about. 

He moved very slowly a lot of the time, but could also be impressively speedy. His level of understanding was very good, and so was his memory. He liked to talk about sexual violence, especially if it was a locally publicised crime, because then he could discuss with female workers the safety of their chosen route home. He worried about whether staff liked him, and asked them directly. He asked staff if they were his friends. He sometimes called the emergency services in the middle of the night because he woke up terrified that he was going to die. He has been exploited financially throughout his adult life. He was unique. He was witty, funny and thoughtful.

It was harder still to work with this service user when I found out that he regularly found the energy and time to hop into a taxi, travel down to a local brothel and pay for the company of young women. He had a preference for eastern European women. In a painful irony, many of the women service users I work with, especially with the current welfare reforms, have, or do, prostitute themselves.

This man was only one of ten residents in the mental health service he lived in. He started with 24 hour support, but as the money drip-dripped away, so did his support. The team that work with him have not had a pay rise in 4 years because they are not NHS staff.

I think for this example in particular the welfare state and its provisions are an interesting fit. I don’t even know how the staff that work with him now are going to begin to approach the ESA50 form when it comes, or the distress it will cause. In the last 6 months (in a different support role) I have supported various people to fill out ESA50 forms, and despite being as sure as I could be that all would go straight into the support group, the wait was unbearable. All of them smoked, and all of them increased their cigarette intake at this time. A number had to go to the doctors and have their anti-anxiety medication increased and those that drank reported drinking more.

Doing this job highlights the stark difference between the rhetoric at the top and the reality at the bottom. Nothing is packaged up smartly and neatly like some legislation would suggest that it is.

It also forces me to ask big ideological questions about what I’m even doing in a university – and what I want ‘impact’ to mean in terms of research.

Crumbs.