Pain and care

I think, correctly, people will find expressions of pain uncomfortable for the person whose hearing it, so that they don’t… maybe their protecting the audience. It’s a lack of faith, that people can deal with other people’s pain.

(some people will talk about nothing else but their pain/condition..)

That’s what I mean about support groups, letting something absolutely and totally dominate your life. Which allows that thing to define you.

A sense of humour is terribly important. It’s true that people mitigate difficult conversations with humour, and it may not be appropriate if their not in that place. I would say I have a pretty strong sense of humour and that helps.

I do believe in being upfront about whatever’s going on, and you’ve found that then promotes others to talk themselves. Maybe its having been in the caring profession, it’s no good hiding things. By bringing something out it makes things easier to cope with- that’s the function of art isn’t it?

(some peoples personality, you warm to and want to care.. I was thinking about Mary Hartin, she could hardly communicate with words, and yet you just wanted to be with her)

She was a very open person a very giving person.

(I imagine as a carer it would be very easy to care for her)

definitely

(in our sessions, she was life and soul, even though she had so few words, her body, her eyes her face communicated so much.)

Primo Levi had this concept, of hope, that he believed people survived the concentration camps because they maintained a sense of hope.

People have felt about the American positive thinking, about how you deal with cancer- leads you to either feeling if your not surviving as it where, then you are somehow guilty because you haven’t led a decent life, or you’re not thinking in the right way.

(putting the blame on the person, rather than the condition)

That somehow you can find this magic formula in life, and going to live forever…It puts a blind fold across you, shutters up. Being tested is interesting, living is interesting- so will dying be I imagine.

Alison Creed in conversation

Palliative Care

Sister Debbie Smith interviewed

by Philip Davenport, at Bluebell Ward, The Meadows, Stockport, 2009.

Palliative is a very broad word: looking after someone when there is no longer a cure. Anything from two years to two days, a whole range. Palliation is based on care not cure – symptom control to let someone have the best quality of life. To me, it’s searching for the real person, trying to give them control of what’s happening. Their life is coming to an end. They need control if they know what’s happening and need to be given choices; if they don’t know it’s even more complex.

I chose to do this work 15 years ago. A holistic approach is the core - psychological, physical, spiritual – that’s the crux. People are not just a bag of symptoms or tests. Plus, they sit within a family and you talk about it all with an appropriate family member too.

What is a good death experience? In whose eyes, mine or the patient’s? You can make death appear comfy, distress-free, with drugs. But you can also go through this talking. It’s the patient’s experience, it’s their’s, their control. Yes there is such a thing as a good death, listen to what the patient wants. Perhaps my patient wants to go home. It’s not what I would want, but it’s good for him. His decision, his good death experience. Most people die in hospital, but they actually want to die at home and we should support that, recognise it. But the support needs to be there, the family need to be able to cope, or else it won’t be a good death because the family are left with the pain.

Giving a frame to the end of life, a plan of what to do. Providing for all sorts of needs. The end of life tools are important, planning is important. Liverpool Care Pathway is very good example. This area is improving all the time, money is going into it, people recognise it as an important part of care. We’ve all got to die.

This area is our speciality, this thin line between palliative care and long-term care, where you can still correct the correctable. We don’t think, “Oh they’ve gone palliative, we can’t treat them.” But we won’t go to the extremes of care they will in acute. Most people who come here have already gone through that system. We won’t go to the aggressive end of treatment because it’s upsetting to no good result. If someone’s got terminal cancer, say, we give comfort not cure.

It all depends on the patient. Often they don’t know they’re at the end of life, or they might not want to talk about it and you have to honour that. You reflect back, the patient takes the lead and you reflect back. They only go as far as they want, it’s very gentle. Are you the kind of person who likes all the details at once, or do you like a little, bit by bit? Most say the second. Explanation and listening are key. It’s the same with the relatives: “What do you know?” They might be anxious, frightened. They might not have been told much. Might’ve been told there’s more hope than there is. We actually have to tell the truth: “Your mum’s only got a few days.”

It’s definitely a journey, could’ve been going on for years. Many have had surgery, relapse, treatment, relapse, surgery, relapse. Then suddenly it all stops. We can only manage symptoms. Some people are very accepting, they don’t like it but they accept. Some people ask you to end it. Most talk openly to us about it, but they’re a bit more guarded with the families because they don’t want to upset them. We work closely with chaplains, volunteers, consultants – it’s a team effort. The staff can get upset too and we support each other.

We get sent ‘symptoms’ and we give them back their life for a time. We give them quality. They might have a few days when they can appreciate their family, their memories, their time. It depends on how you look on things; my cup is half full. At the end of life there’s a lot we can do. If it’s your last week of life and you sit out there with a cigarette and a beer, or you get to see your dog, you have a better life for that time.

It’s not all doom-gloom, we have a lot of fun here, a great atmosphere. There’s a man in here right now interested in perpetual motion and his wife’s brought all his stuff in, bolts and screws all over the floor. I don’t mind. People bring in takeaways. We had a bellydancer and one chap, his eyes nearly fell out of his head.

Communication keeps it all together. And it’s not what you say, but how. And it’s even more important what the patients say to you. Or what they don’t say; body language. Very often they lose eye contact if they’re scared. It’s opening a can of worms, but I always step in and talk about it.

Who copes? People who have had adversity – for instance, chaps in the war – people who have dealt with that cope. They seem to be more accepting. Sometimes people with a faith cope better. But beyond that, who can generalise? You’ve not dealt with this before, there’s no set rule. People who are well-informed and up to speed handle things better – they have control. If they can advance plan, they still feel it’s their life. People who have been kidded along or misled can’t get beyond anger and the whole thing is difficult to accept. More informed people have less damaging emotions to get over. Same with relatives, they don’t need to go through some collusion where no one talks about it, it’s more open.

There are myths about palliative care, that it must be miserable. It’s not, it’s an honour, a privilege. We have a lot of laughs, when it’s appropriate. I hope someone will be there for me like this, at the end of my life. There are a lot of myths about death itself, people think it’s scary, sinister, because we are a death-denying society. It’s denied, behind closed medical doors. People paint black pictures, but I think it’s becoming more open.

The right to die. I’m a member of Dignity – I think if you have an incurable illness, I think you should have a right to choose. Shouldn’t have to go to Switzerland or wherever. Also, that a family won’t get prosecuted. In Holland it’s physician assisted, in Switzerland people pick up the pill itself. But palliative care dying will create far less stress symptoms; someone can die with dignity if its done well, properly.

What have I learnt from all this? Can’t put it into words. What people have shown me is the fantastic dimensions to the human spirit. People never, ever cease to amaze me. It is a privilege to be there at someone’s death, and to do it properly you have got to give of yourself. It’s important to get it right. You only get one chance to do it right, or it stays with the relatives. Because the memory of those who have died lives on in us who are alive.

Interview with Sister Julie Hopwood. Rehabilitation Ward, Cherry Tree Hospital

I knew what I wanted to do this right from leaving school. I wanted to be a nurse, and I wanted to work with older people. I had always had a great affinity with my grandmothers and older adults. I knew it was a Cinderella Service, but I felt prepared to meet the challenge. I did an A-level pre-health course at Stockport College. At eighteen I started my nurse training at Withington Hospital. As a newly qualified staff nurse I went to Barnes Hospital and did stroke care. I was fortunate, and became a ward sister within a short period of time here at Stockport. I hope my early appointment was attributed to my enthusiasm and drive to make a difference in this area of care.

I started my job as a ward sister at the same time as a newly appointed charge nurse. It was a good partnership. We had both been trained in the South Manchester at same school of nursing. The ward had both the benefit of a male and female perspective. Together we made changes – nurses were encouraged to owned the care they gave. We allocated specific nurses to specific people – it encouraged a deeper relationship – if you look after somebody day after day, you don’t just talk about the weather, you talk about real issues and what concerns them. Care needs to be personal and individual to give the greatest benefit. People think older peoples medicine is about incontinence and dementia. It’s not. It’s about adults who are ill – often with combinations of illness and complex care needs. We should adjust our ideas because people now stay well longer. We are more likely to give elderly care in all specialities of the healthcare. Care of the future cannot discriminate against age.

We offer dignity and respect, by discussing and offering patient’s options. It’s about control, offering choice, giving the patient control. Even as simple as: “ Do you want to wear this, or this?” At one time you did what the doctor ordered. Now, you get options, you are still an adult, not a lesser person because you’re elderly.

Older people have amazing life experiences. They’re an interesting group to work with. They saw the world when it was a different place. You can also ask the question: when are you old? A 65 year old can have an ‘older’ outlook than a 90 year old who is a fighter and has lasted through many changes in life. There was a lady I looked after who described how she used to chew the bed-sheets at night when she was a child, because she went to bed so hungry as a consequence of living in poverty with a very large family. How different times are now. Now we look after elderly people who carry mobile phones!

Even in my time of being a nurse, I’ve seen changes in care. If you were a patient with incontinence, you had to wear a pad and particular adapted clothing, almost a uniform. Pain management – now instead of injections, we have patches that absorb into the skin. We also have a more positive attitude towards death. With good management, you can have a good death experience, pain controlled, nausea managed, psychologically supported.

In elderly care, we assess for scales of depression, which can affect recovery – if you come in here thinking you’re going to die, it doesn’t help recovery. We discuss the need to use antidepressants if a low mood is identified. Lack of motivate hinders the recovery process. Treatment with antidepressants though may take two or three weeks to start a therapeutic effect and that can impact on the length of stay in hospital. The emphasis now is to get people out of the hospital as quickly as possible once they are medically fit.

The focus in rehabilitation has changed. It used to be non-acute care or convalescence in a hospital setting. Once rehabilitation patients were medically fit but frail and in need of therapy in a hospital setting. Now rehabilitation aims to happen out of hospital; in your own home, or in an intermediate placement at a residential home. Decisions about discharge destinations for rehabilitation are usually made considering night time safety and social circumstances. Hospitals are going to struggle with meeting care needs in the future as our population grows if it does not do things differently. Hospital stays aim to be about acute care, you come here if you are medically unwell and are in need of active medical intervention that cannot be met in the community.

Florence Nightingale said hospital should do you no harm. But if you put sick people together, you put them at risk. At home you are safer, if you can self-care. If people self-catheterise, they’re less likely to get infection. Same with self-care of emphysema, the emphasis now is training people to recognise they’re getting ill and to treat themselves with readily available steroids and antibiotics, so they don’t come into hospital and get recurrent infections. Kids with diabetes learn to monitor their own insulin levels.

Infection control is a big issue. We’re making advances in cleaning skin. Washing hands between patients, sterile gloves and aprons. There’s a lot of hand-washing. We wash hands before and after each person. But constantly hand-washing can make your hands dry and crack – which in turn carries risk of infection – so you need to moisturise hands too. Our hands are the tools of our trade so we have to look after them!

We use colour-coding: aprons are green for food, blue for dressings, yellow if a patient is infected, and white for general use. The mops and buckets are all colour-coded too to use in separate areas of the ward. Simple systems make a difference.

The public have been frightened by the news coverage of increasing numbers of MRSA and Clostridium Difficile in hospital settings. If you were to get on a bus full of everyday folk, a high percentage would have MRSA on their skin. That isn’t a problem as they are fit and well individuals. MRSA has a greater impact on un-well individuals especially those in hospital. Patients can become infected with the organism as a consequence of passing the skin barrier at wound dressing, catheterisation and cannulation and so hand washing and asepsis is vital practise.

Then there’s the bowel infection Clostridium Difficile, which is usually antibiotic induced. If you are frail and you’ve taken certain or multiple courses of antibiotics then you are susceptible to this infection. The antibiotics can destroy the good flora in your gut and the dormant toxin present in your gut can takeover giving you the drug induced colitis and subsequent diarrhoea which is clostridium difficile. This infection could then contribute further to increased frailty and an increased length of stay in hospital.

It’s about being human, coming into hospital. You are faced with your frailties. You’re the new kid at school again. You want someone to show you round, make you welcome. We’re preparing your journey, whatever it is. We have a duty of care and we try to engage family and friends too, for help. It’s not just about us who are the carers or experts in care. The family contribution is vital, as they know the particular person and how they behave when they are well. If they are concerned about something, I seek a medical review. They can’t necessarily say what is troubling them about the state of their relative, but they have a perception and it should be taken seriously, not dismissed because they aren’t professionals. Working together with the family unit is important to achieve the best outcome for the patient.

Complaints shouldn’t be dismissed either. They shouldn’t be seen in a negative light, because they help us to improve our service when we get it wrong. We are all human and capable of getting it wrong sometimes; as the saying goes “By the grace of God there go I”. If we don’t reflect, review and change, then we’ll make the same mistakes over and over again.

Who deals with hospital best? It is hard to say. Some people present well, but they will not share their experiences – they could be anxious or depressed. Men especially try to put on a brave face. You could line up five people with the same illness and they’d all present differently. It’s about how people deal with it, there’s not a right fix for everyone.

Accident and Emergency focus on illness first, but in rehabilitation we need to consider the physical, psychological, spiritual, social aspects. We determine how you were living before your illness, what are achievable goals, what goals are too big. People sometimes get disappointed if they measure themselves against others. But we are all different and can respond differently according to our life conditioning.

The physical and mental are interlocked. Some people believe that faith helps them. But you can also turn that on its head. Others see illness as a punishment from God.

Motivation and following instruction has a lot to do with recovery. I cared for a man who had a stroke, a bad one. By his motivation, his diligence, he recovered more than he ‘should’ have done. And the converse can happen. If a stroke damages part of the brain that affects understanding and you can’t follow instructions, then your recovery isn’t going to be as good. You also have people getting aggressive towards staff because of misunderstandings. If a nurse is doing something to you that you don’t understand, then you defend yourself. And that can get you labelled as difficult, or disturbed… If you have a diagnosis of dementia, people tend to stand back from you. But dementia doesn’t necessarily bring behaviour difficulties.

For staff, is it possible to have compassion, fatigue, burn-out? I’ve had burnout because I care passionately about what I do and understand my responsibility as a registered nurse and ward manager. I often stay after hours if the service requires it for a better patient outcome or to ensure management goals are met. But sometimes it does become expected that you will stay on and sometimes you have to draw a line that you balance your work and home life. Care can fluctuate at the end of shift, so you might stay on if you have the skills others haven’t. I’m the manager of the ward, so I need to have an overview of all the ward issues to lead effectively. I need support and good communication from the ward staff. I ask for feedback on their workload & how the shift was, to enable me to delegate appropriately & protect them from fatigue and risk of injury. I try to be fair & balanced with my decision making but I am mindful that we have to meet the service needs.

You’ve got to get a team that works well together – a 24 hour service. People cannot be left packed up in bed with incontinence pads. A pressure sore only takes a couple of hours to develop. You can’t sit and read or knit – you’re being paid to be a nurse. You are always on the go assessing, anticipating and meeting patients care needs.

If you’re a patient with dementia, you might need the prompt of sitting at a table with others in order to eat. People coming together makes them interact. People with dementia in that situation will perhaps pick up knives and forks when otherwise they might not have done if left to themselves. New wards are designed for bed to chair existence with no dayroom or dining facilities. This is the design for acute care and not rehabilitation. Almost like battery nursing on a conveyor belt- quick in quick out. Time will tell if this new design will change to again encourage patients to interact.

People need to understand their illness – for instance, a stroke is not a quick fix. They need a strategy, things to occupy them, to entertain them. Everyone is individual in this, recovery time is individual. And even their personal coping strategies have to change – using same coping strategy repeatedly doesn’t work. The family can help get people re-engaged into the community. Going out into the grounds in a wheelchair, go for a drive with your family. Achievable goals must be given to motivate recovery. Prognosis & progress should be discussed honestly. You have the right to the information first, if it’s about you.

We all become vulnerable at some time in our lives. This might be for physical, or mental, reasons. Or it might be emotional, a relationship break-up for instance. We hear a lot about ‘vulnerable adults’ and we have changed our practice because of that.

Changes always come, turning what we previously knew on its head. Nursing changes, it spirals, moving on. We should take the good with us, looking always with new eyes.

Interview with Philip Davenport, 2^nd September 2009

Terminally ill and suicidal

I've just finished listening to a fascinating program on the radio: 'Inside the Ethics Committee', entitled Terminally Ill and Suicidal

Phil and I have been wanting to create some work on the emotive subject of death, dying and Palliative care with older people, for the PATIENCE project, so it was a timely and very informative program.

In it Joan Bakewell discusses the real-life case of Mary, a terminally-ill woman in her 80s. She has considered her condition and has decided that she wants to die.

If you missed it and want to listen again, or find out more about the subject matter, you can by following this link http://www.bbc.co.uk/programmes/b00lvgwj