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Music Therapy in Dementia Care

29 Jun, 15 | by Gary Mitchell, Associate Editor

Lucy Frost

 

Lucy Frost @lucyjmarsters from Brighton and Sussex University Hospitals NHS Trust(BSUH) @BSUH_NHS will be leading this week’s EBN Twitter Chat (#ebnjc) on Wednesday 1st July between 8-9pm UK time focusing on music therapy in dementia care.

Participating in the Twitter Chat requires a Twitter account; if you do not already have one you can create an account at www.twitter.com. Once you have an account contributing is straightforward:

  • Go to your Twitter account
  • Follow the discussion by searching for #ebnjc once linked to the discussion, click “all tweets” to keep up-to-date with recent tweets
  • Add the EBN chat hash tag (#ebnjc) to your tweets to join in, this allows everyone taking part to view your contribution

BIO

Lucy Frost is a Dementia Nurse Specialist and Dementia Champion at Brighton and Sussex University Hospitals NHS Trust(BSUH). The Dementia Team at BSUH supports people with dementia and their loved ones and carers within the acute hospital setting – Lucy has been heavily involved with the development of this specialist support.  She leads a programme of education around dementia for hospital staff and other health and care professionals.   Lucy is a strong advocate for the need for Dementia Specialist Nurses and their impact across health and social care.

Twitter Handle: @lucyjmarsters

 

THE POWER OF MUSIC

The benefits of music for people living with dementia are obvious aren’t they?  Music brings us back to memories buried deep within ourselves, it re connects us with feelings and emotions, it makes us laugh, cry and feel every emotion in between.  In science, we know that music is a powerful stimulus for the brain.  It is this stimulus that creates a response even when dementia has taken a person’s senses so far away from our reach.

So why is it that many of our hospitals and care homes play music that is obsolete to the people hearing it?  A radio playing lamely in a corner, A collection of discs in a lounge that have not been chosen by the resident or their loved ones.  Why can’t music and singing be heard often in hospital wards?  Why can’t we help a person with dementia make a personal playlist?

I recently spent time with a person with dementia on one of our wards – They had few words, and their distress was obvious.  A nurse told me of the person’s previous career as a dance teacher – A quick google search and clips later-On seeing Gene Kelly – We were singing and dancing in minutes.  The words came back:  We had a wonderful conversation about the dance halls of their era and their favourite dances.

Last year – I became aware of a film called Alive Inside, following a former social worker in his quest to procure music playing devices for American Nursing Home residents.   This film shows powerfully the enormous impact of music when it reaches someone deemed ‘Unreachable’.  The film shows everything that can be wrong with nursing home care, yet when the music comes, the human being within shines.

We decided to hold screenings of this film publicly, as well as using the film as part of an education programme for hospital staff – to show the power of music and get this message out into our local community.  The response showed us how powerful music is – Nursing home leaders pledged to share more music, with one home buying I pods for their residents, hospital staff shared ideas as to how to make music a part of a day on a ward.  The project was evaluated and it was clear that the message of the power of music has the potential to change the life of a person with dementia for the better.

Access to music therapy and the use of music in health care was a subject for debate at the recent Royal College of Nursing Congress in Bournemouth.  The consensus was very much that music clearly is a massive enhancer for wellbeing – yet access to music and music based therapies remain limited.

I would like to know – What is out there for people living with dementia to help them connect with the music that matters to them.  Why don’t people living with dementia have access to a personal playlist – There are people out there trying to widen the reach – Playlist for Life, Memory Bank, Life Story Network, Singing for the brain sessions hosted by the Alzheimer’s Society – Why aren’t these initiatives being adopted everywhere?

What are people’s experiences of using music to help a person with dementia?  What work is going on to show the value of music and therefore promote the uptake of music based therapies?  These are all things I would like to focus on in Wednesdays #ebnjc chat.

I am sure many people will have already seen this – but if you can – watch this:  The importance of music in this moment needs no explanation.

 

SUGGESTED MEDIA

Henry listens to music

Music and Memory Organisation (USA)

Playlist for life (UK)

Sally Magnussun writes about her experiences

 

First Do No Harm….Lowering One Risk and Increasing Another

22 Jun, 15 | by rheale

Roberta Heale, EBN Associate Editor, @robertaheale @EBNursingBMJ

Implementation of evidence into practice is the gold standard for healthcare. Ultimately, we want patients to have the best possible health outcomes, but nothing is without risk and balancing the risk is not always easy. Take cardiac prevention for example. The ongoing battle to prevent cardiac events led to the development of statins which have revolutionized cholesterol management. A low cholesterol profile is significantly associated with fewer cardiac events and statins are prescribed for both primary and secondary prevention, particularly in high-risk groups such as those with diabetes. However, it is well known that patients with diabetes often have increased blood glucose levels when taking statins. In fact, it has been widely known that statin therapy has been associated with the development of type 2 diabetes, but the numbers were thought to be relatively low (9%). A newly released population-based study reveals that statins appear to increase the risk for type 2 diabetes by 46% in the general population, even after adjusting for confounding factors. http://link.springer.com/article/10.1007%2Fs00125-015-3528-5

Cardiac care and prevention has now become much more complicated. The risk of developing diabetes related to statins is dose dependent, so prescribing the lowest possible dose is warranted. Patient lifestyle counseling is even more important; increase exercise, stop smoking, low fat diet etc. No easy feat when obesity is on the rise. It’s more important than ever for patients to be fully informed in the decision to start statin therapy.

We want patients to receive the best quality of care, based on the best evidence. Yet, keeping up with changes is difficult. We live in a wonderful age of technology and information. At the same time, how do we stay current and, harder still implement new findings on a regular basis? Given the enormous amount of information available to us daily, this situation is not going away. Finding strategies for flexible approaches to practice is the new normal and keeping the patient the centre of care decisions is the best bet for maintaining your balance.

 

Raising awareness about falls within care-home settings

19 Jun, 15 | by Gary Mitchell, Associate Editor

This week has been a busy one – on Wednesday 17th June we featured a twitter-chat with Dr. Neil Black from the Western Health and Social Care Trust for diabetes week.  On Thursday 18th June we ran a guest blog from Queen’s University student nurse Nadine Falconer for learning disability week.  Today we are rounding off the week with another guest blog from Four Seasons Health Care’s Melanie Bowden for Falls Awareness Week.

Melanie Bowden & Team

Melanie Bowden & Team

 

The impact of falls can extend beyond just physical pain, especially in older people.  Falling can indeed cause significant physical injury but it also has an impact on the social and psychological aspects of a person’s life.  For example, if a person falls they may not want to go out or live the life they are used to because of the anxiety or fear of falling again.  With consideration to my role as a Practice Support Manager for Four Seasons Health Care, we noticed that falls had been something that was occurring more often.  While it may be unsurprising that the prevalence of falls is higher in care home residents than in other groups of people this was still something we wanted to give attention to by refreshing the issue with our healthcare staff across our 72 Four Seasons Health Care homes around Northern Ireland.

So what’s a fall? Falling is defined by the WHO (2007) as “An event which results in a person coming to rest inadvertently on the ground or floor or other lower level.”

We began by analysing the data generated within our internal DATIX system, which held all the documented information on falls throughout the 72 care homes.  I could see that falls that were labelled as ‘not known’- were recorded quite regularly and so this was where I set the initial focus.  Our accident forms already have detail regarding falls – questions for example, such as did the fall occur from bed, chair, or was the resident found on the floor?  The form also had the time and location of falls.  The weakness I noted in the system was that although there were procedures in place for falls, our nurses did not appear to be critically reviewing the data so the incidence of falls did not seem to be reducing – we did not appear to be learning from previous falls.  There is never any point in reinventing the wheel so I invited a representative from the Northern Ireland Health & Safety patient forum to join Jonathan McCleery, our Health and Safety manager, and myself, for an initial meeting to see how we could develop an initiative to, not only raise awareness about falls, but ultimately to reduce their prevalence in clinical practice.

I designed an educational resource which was piloted with 18 care homes.  Each care home was required to send 5 members of their clinical team.  The educational resource was mostly based around clinical knowledge which was supplemented by a free online course from future learn.  The course, Ageing Well: Falls , was designed and delivered by the University of Newcastle in 2 hour blocks over a period of 4 weeks.  This was very informative and provided a theoretical underpinning for our educational resource.  As well as providing theory, the educational resource also provided care staff with practical help in relation to falls.  Care homes would place a laminated sheet at their nurse’s station which listed the days of the month.  If a fall occurred on the unit, the care staff would cross the laminated sheet with an ‘X’.  If no fall occurred then the day would not have an ‘X’ beside it.  The idea behind this was to provide a visual aid so as to illuminate the prevalence of falls within any unit.  If people could see that falls were occurring very regularly then this would encourage the healthcare team to critically evaluate the situation.

Staff for each home had their first training on falls off site – they were introduced to the topic and explanations given on how falls could be reduced in the home. To lighten things up a bit I invited a local optician, Optomise, to come and show our staff with their ‘fancy glasses’ what it was like to have poor eyesight – it was amazing to see confident staff become anxious about walking across the room with the glasses on.  This was very powerful in underlining the message that our residents could very easily fall if they had eye problems.  In addition to these we ran other external programmes in relation to falls.  As a practice support team, our team made individual visits to each home on the programme supporting and encouraging the teams as they focused on raising awareness about falls.

Overall, this initiative has led to the development of practice across the care homes within our organisation.  Early empirical data analysis has evidenced a notable reduction in the number of falls as well as an increase level of awareness about the triggers, the impact and the future management of falls.  I was very privileged when the falls programme was recognised at the Northern Ireland Royal College of Nursing Awards recently, finishing runner-up in the category of Chief Nursing Officer’s Award.

FSHC Falls

 

Melanie Bowden @melaniebowden6

Practice Support Manager

Four Seasons Health Care @FourSeasonsHCUK

Learning Disability Awareness Week 2015

18 Jun, 15 | by Gary Mitchell, Associate Editor

 Nadine Falconer

This week (15th – 21st June) is Learning Disability Awareness Week and to celebrate this we have invited Nadine Falconer, a 1st year learning disability student nurse from Queen’s University in Belfast, to blog about her first year as a student nurse.

I feel very honoured to be asked to write a guest blog on Learning Disabilities in relation to Learning Disability Week 2015, where we all hope to raise awareness and break down barriers that people with Learning Disabilities may face.  I am a first year Learning Disability Nursing Student at Queen’s University Belfast and I am currently on my third and final placement of first year.

Living with a learning disability simply means that the person has a reduced intellectual ability and may need help with everyday activities.  It does not mean they are incapable, nor does not mean they cannot work and it certainly does not mean that the person cannot have meaningful relationships.  This is something that people with learning disabilities often struggle with.  Often, the people they have the most contact with are health care professionals.  As a nursing student, I am fortunate enough to be in a position where I can spend valuable time with the clients and have been able to, not only provide healthcare, but also share in their everyday daily lives.

Nadine Falconer

 

In my first year of studying Learning Disability Nursing I have been able to learn and put into my practice my new found knowledge.  People with learning disabilities are unique individuals who can teach every one of us something.  Becoming a Learning Disability Nurse is about empowering those individuals and being their advocate, to speak up for them and be their voice when they cannot be heard.  It is not primarily about making the person better.  We focus on the person holistically.  We look at the person as a whole.  We look at their communication needs, we look at how to improve and maintain their quality of life.  We look at how to ensure that individual can access what you and I may take for granted.  Anyone who is involved with people with learning disabilities, will know first-hand how complex caring for a person with a learning disability can be.  The number of syndromes, and complex level of care some individuals require is astounding.  This is where learning disability nurses come in.

As I progress through my course, I continually learn new things about the world of learning disabilities.  It has been difficult but it has been so rewarding.  I have danced, arranged flowers, painted, had the opportunity to go on day trips and provided care for someone at the end of their life.  No day on placement has ever been the same.  I have enjoyed every minute of my journey in becoming a learning disability nurse.  In Learning Disability Week, I would ask that you stop and reflect on what you know about learning disabilities. Not all disabilities are visible and not all disabilities are physical.  Aim to educate those around you and aim to ensure that those with learning disabilities are noticed and celebrated.

As I come to the end of my first year of learning disability nursing, I cannot help but feel excited for my next year and what is to come.  I have felt exhausted, I have felt drained, but most of all, I have felt privileged to be part of the individual’s life, even if it’s only for a short while.  I have met some wonderful people along the way; learning disability nurses, carers, parents and most importantly the individuals with learning disabilities themselves.  As a learning disability nursing student, we play an important role in helping to demonstrate to the other nursing branches just what it is that we do.  As a qualified learning disability nurse, or RNLD, I will be able to care for those with a learning disability from birth to their last moments of life.  So in my next 2 years of education, and beyond, I aim to raise awareness of learning disability nursing.  So if I could ask anything of you, it is this. Don’t think of people with a learning disability as unfortunate, or a sufferer.  Think of them as empowered and educated.  Listen carefully and take note, the future of learning disabilities is changing.  I welcome you to be part of that change.

Nadine Falconer @ld_studentnurse

Queen’s University Belfast @qubnursing

 

Check out Nadine’s personal blog page here

 

 

Diabetes Week: Communication and Awareness

15 Jun, 15 | by hnoble

A Twitter Chat with Dr. Neil Black (@RneilABlack) – Wednesday 17th June @8-9pm.

Dr Black, from the Western Health and Social Care Trust in Northern Ireland, will lead the Twitter chat this week focusing on diabetes communication and awareness. Participating in the Twitter chat requires a Twitter account; if you do not already have one you can create an account at www.twitter.com. Once you have an account contributing is straightforward:

  • Go to your Twitter account
  • Follow the discussion by searching for #ebnjc and click on “All Tweets”
  • Add the EBN chat hash tag (#ebnjc) to your tweets to join in

Written by Dr Neil Black:

I feel really privileged to have been asked to write this blog during Diabetes week which is about spreading awareness regarding diabetes.  I’d like to use this to share two things that I’ve learnt from people living with diabetes themselves. Whilst I’ve been involved in diabetes care for almost 14 years, this was turned around completely about 3 years ago. What happened?  Well, I really started to listen to people living with the condition.

What do people with diabetes want those who are newly diagnosed to know? How do we talk to people who have been newly diagnosed with diabetes? How can we communicate about complications of diabetes? Last week’s @OurDiabetes Tweetchat was revealing and added much to my awareness. A strong running theme was that people wanted to be told that they weren’t alone and how to connect with others with diabetes. While this was a group of people with type 1 diabetes, the points ring true for those with other forms of diabetes. A knowledge even that someone exists who understands what you are going through could make a big difference. Actually being able to get in contact with others with your type of diabetes could be a life-saver. People wanted to know that while having a new diagnosis of diabetes takes up a lot of time in your life, that you had to make room for it but not let it set the agenda for the rest of your life: diabetes should fit around your life, not life around diabetes. They wanted to know how to manage it themselves and be supported to do so. Talking about a new diagnosis of type 2 diabetes is different, because it has likely been there undiagnosed for years. Sometimes this means that we discover it only when that person presents with a complication of diabetes. I tell people that it is good news they have been diagnosed as now we know that they need protection and how to give it, where prior to diagnosis they had the condition but were at greater risk of the complications. Talking about complications is a sensitive subject in itself. People living with diabetes tell me that they want tact and for us to concentrate on how to reduce risk – they know they could develop complications already and what matters to them is how they can protect themselves.

I’d like to come back to types of diabetes as, after all, it is Diabetes Week. I mentioned earlier that those with established type 1 diabetes want people with newly diagnosed diabetes to know that they are not alone and how to contact others with their condition. Well, 90% of people who have diabetes have type 2 and only 10% have type 1. It’s a common misconception that people with Type 2 diabetes are to blame for their condition. It is true that a sedentary lifestyle, excessive unbalanced dietary intake and being overweight increase the risks of Type 2 diabetes. It is also true that making lifestyle changes and losing weight reduce the risk of developing Type 2 diabetes or delay its onset.  However, many people with type 2 diabetes have a family history of the condition and if you have one sibling or parent with Type 2 diabetes, your lifelong chances of developing it are about 50% compared to about 5% for the general population. So, people with Type 2 diabetes have inherited strong genetic factors that led to their condition. It seems less reasonable to blame people with Type 2 for their diabetes. Interestingly, people with other forms of diabetes may also lay blame on those with Type 2 diabetes for their condition. I hope that seems less reasonable now.

People with Type 1 diabetes can present as a medical emergency in diabetic ketoacidosis but, even if they do not, require insulin injections from the start. A temporary recovery of pancreatic function lasting a few to several months (the ‘Honeymoon Period’) can occur with the person needing very low insulin doses or no insulin at all, but eventually the pancreas cannot make enough insulin and insulin injections or infusion then needs to be lifelong. It is better to think of insulin as a vital life-sustaining hormone for people with Type 1 diabetes, rather than a ‘treatment’ as consistent lack of insulin administration inevitable leads to becoming medically unwell and death if untreated. We should respect people who live with Type 1 diabetes and respect the insulin they take.

Less common forms exist, for example Latent Autoimmune Diabetes in Adults (LADA) appears to be type 2 diabetes at diagnosis but, sometime later, the person develops a dependence on insulin as their pancreas has been attacked just as in Type 1 diabetes. We know that 10-15% of people with apparent Type 2 diabetes actually have LADA which is really part of the spectrum of Type 1 diabetes and together form a spectrum of ‘autoimmune diabetes’. Secondly, about 1-2% of people in the UK with apparent Type 1 diabetes actually have a genetic cause of diabetes called Maturity Onset Diabetes in the Young (MODY). This is important as we think that we are only aware of 20% of cases at best. Making a diagnosis could mean that we can stop insulin therapy which otherwise would be lifelong. Thirdly, gestational diabetes starts in pregnancy and poses risks for the mother and child before, during and after delivery. While it usually resolves immediately after delivery, it usually recurs in later pregnancies and indicates that the woman’s lifetime risk of Type 2 diabetes has risen from 4-5% to 40-50%.

Diabetes week gives an important chance to get these points across. Diabetes is not about blame, but about respect for the person who lives with it. People who live with diabetes need support from each other and healthcare professionals. We can only deliver good care if we follow these principles.

Questions for consideration during our chat:

Q1: How do you think we can best support people as they are informed of newly diagnosed diabetes?

Q2: Do self-help groups for people with diabetes work?

Q3: What are you doing during diabetes week at your place of work?

Q4: Have experienced barriers/support to good provision of education for people with diabetes?

A Personal Account of Caring

10 Jun, 15 | by Gary Mitchell, Associate Editor

 

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This week is Carers Week and it runs from the 8th of June to the 14th June 2015.  

It’s a time where healthcare professionals and individuals, like myself, raise awareness of the important role that carers play.  This awareness pertains to what a carer is, what they do on a daily basis and where it is that they can go to access support services.  It’s a cause that is inherently close to my heart because I am in actual fact, a carer.  I have been since the age of 11. You might think this is young but the truth is there are carers younger than me and a lot of carers older than me.  Being very young or very old then doesn’t give you immunity from the role of caring for a loved one.  Irrespective of age or individual circumstances, we all share the same role of carer.  We look after a loved one who needs help – be it a family member, a friend or neighbor.  The people we care for may have physical or learning disability, a long term health condition, a mental health problem or even have problems with addiction.  Some carers may even fit into any of these categories themselves.  I know I do.  I have anxiety and OCD, but I continue to care for five people in my family.

I started caring from the age of 11 – it’s all I’ve ever known.  My grandma and granddad used to look after my great grandfather who had dementia and had one of his legs amputated so caring has always been in my family.  He used to live with them until he moved into care and he died in 2006.  Just before this, in 2005, my grandma fell down the stairs and this accident changed the life of my family and me forever.  Everything just spiraled downwards from that point in time. When my grandma got out of hospital, 4 months after her accident, we thought everything would just go back to normal.  It didn’t.  It was only beginning.  She was diagnosed with epilepsy and diabetes.  To make matters worse, we were told that the brain damage she had already sustained would get progressively worse.

Caring from my grandma became more difficult as I then had to play a role in caring for 3 other members of my family.  I don’t want to go into that, because it’s still so raw for me.  Not all carers want to talk, tell their story or raise awareness.  Some of us prefer to remain in silence and some people struggle alone.  While I don’t want to go into details I will say that mental health problems are involved as well as substance misuse.  There is a lot of stigma surrounding these issues and unfortunately it is not something I can discuss further.  I have been living with this aspect of caring since I was 14 years old.  My grandma eventually went into care when I was 17, I think.  It sounds terrible but my life from the age of 11 has basically been a blur of events.  From then, my granddad’s health began to decline.  He drank a lot – probably to cope with grandma’s deterioration and his health problems worsened.  Then something we weren’t expecting happened – he was diagnosed with dementia.  The dementia caused a number of hospital admissions and eventually changed his personality and behaviour.

In September 2014, it was time for me to move away from home to go to university.  I left my physical caring responsibilities at home, but I would still be the person at the end of the phone if anything happened to anyone.  My family was always in my thoughts and that caring responsibility never went away.  When I went back home, my caring responsibilities would resume immediately. The last time I went back, which was for my 21st birthday, everything seemed good but my grandma was experiencing hallucinations and my granddad’s dementia had progressed rapidly.

He was now in psychiatric care.  I went to see him on the day of my birthday and when I saw him, I didn’t recognize him.  He had completely changed.  He didn’t know who I was, which was difficult. He was very distressed because he couldn’t communicate what he wanted and he didn’t have the capacity to hold a conversation with me.  I couldn’t believe what I was seeing.  The feelings I experienced were crushing, will he be able to speak, go to the bathroom himself or recognize anyone again in the future?  He’s only 67 years old.

Caring can be difficult and heartbreaking.  But to be able to give back to my family, the same family who cared for me growing up, is a very rewarding feeling.  There is a considerable burden on my life at times but I wouldn’t change anything.  I know that the people I care for will not always be around and so I enjoy the time I have with them the best that I can.  As a person I have become more caring, more able to adopt a non-judgmental approach and learned how to be resilient.  On caring, I would say – It’s the gift of giving back that counts.

Sophie

 

Sophie Dishman

Sophie Dishman is a carer & undergraduate journalism student at Sunderland University.

Follow Sophie on Twitter @SophieSW14 or check out more of her blogs

 

Palliative Care in Nursing Homes

1 Jun, 15 | by Gary Mitchell, Associate Editor

Guest Blog by FSHCNI Dementia Services Team

Guest Blog by FSHCNI Dementia Services Team

Joanne Agnelli @JoanneAgnelli and her dementia services team from Four Seasons Health Care @FourSeasonsHCUK will be leading this week’s EBN Twitter Chat (#ebnjc) on Wednesday 3rd June between 8-9pm UK time focusing on optimising palliative and end-of-life care for people in nursing homes.

Participating in the Twitter Chat requires a Twitter account; if you do not already have one you can create an account at www.twitter.com. Once you have an account contributing is straightforward:

  • Go to your Twitter account
  • Follow the discussion by searching for #ebnjc once linked to the discussion, click “all tweets” to keep up-to-date with recent tweets
  • Add the EBN chat hash tag (#ebnjc) to your tweets to join in, this allows everyone taking part to view your contribution

 

Background

The World Health Organisation (WHO) has defined palliative care “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual” (WHO, 2012).  Globally, it is estimated that every year over 20 million people will require palliative care at the end of life.  Importantly 69% are adults over 60 years old, highlighting the majority of palliative care needs dominate in the older age group, with cardiovascular diseases, cancer, chronic obstructive pulmonary disease and dementias among the conditions that carry the burden of end of life palliative care (WHO, 2012).  Importantly palliative care differs from end-of-life care which is used to describe care for those who are approaching death, usually within the last 6 months, with a key goal being to make the person comfortable and attend to their needs and wishes as the end of their life approaches (Kelly and Innes, 2010).  In other words palliative care should begin when disease prognosis is no longer curable and end-of-life care, a continuation of the former, should commence when the disease has advanced sufficiently and death is near (Mitchell et al, 2015).

 

Care Home Context

In the UK there are over 17,500 care homes that provide long-term care to approximately 500,000 people.  Of these 500,000 people it is estimated that around 80% of these may have dementia (Alzheimer’s Society, 2013).  Unfortunately current evidence suggests that the quality of care provided to dying residents in care homes is often inadequate (Brazil et al, 2012).  Examples of these inadequacies may include:

– Poor Pain Management

– Not commencing or maintaining advanced care plans

– Inappropriate or unnecessary hospitalisation at end of life

– Limited bereavement support for care partners

– Vast educational gaps in relation to palliative care outside of a cancer setting

– Inability to differentiate between palliative care and end of life care

 

Non-Malignant Disease

Perhaps the strongest rationale for inadequate provision of palliative care in a care home setting is due to deficits in knowledge of nursing staff.  In short, palliative care is still associated mostly with people who are living with cancer even though it is applicable to all incurable conditions like dementia, COPD and heart failure.  These conditions form the bulk of incurable conditions that residents live with in a care home setting.  This is important to note as access to palliative care is considered as a legal obligation by the United Nations Conventions as well as a basic human right (EAPC, 2013).

 

Care Home Admission

Ideally the process of palliative care begins upon diagnosis of incurable illness.  Unfortunately this is seldom the case in practice with care home nurses then being responsible for commencing appropriate palliative care, sometimes once the person has already lived with the condition for some time.  It is therefore optimum practice to commence palliative and end-of-life discussions as soon as a person with incurable disease enters a care home setting.  This is best operationalised through provision of an advance care plan (Mitchell et al, 2015).

 

Advance Care Planning

Advance care planning has been described as the “voluntary process of discussion and review to help an individual with a progressive condition who has capacity to choose to set on record choices about their care and treatment – including the circumstances in which they want to refuse a treatment – in the event that they lose capacity to make these decisions once their illness progresses.  These plans can then be referred to by those responsible for their care or treatment” (Moriarty et al. 2012).

 

Care Challenges

Currently there is a plethora of literature to suggest that care partners of people who experience end of life care have a number of unmet needs.  These include:

– Lack of awareness that the resident was “actively dying”.

– Guilt about decisions that were made in the last few weeks of life (i.e. about artificial hydration, pain relief, do not attempt CPR, hospital admission, antibiotics etc.)  This guilt is almost always occurs because the care partner was forced into rushed decisions.

– Limited bereavement support or appropriate referral.  Palliative care should continue after death to include psychological care of the care partner.

 

Questions for consideration:

  1. Do definitions of palliative and end-of-life care really matter?
  2. What are the key challenges for delivery of palliative care within a care home setting?
  3. What sort of information might be included within an advanced care plan?
  4. When does end-of-life care technically start?
  5. What are the key areas to consider in relation to symptom management at the end-of-life?

 

References

Alzheimer’s Society (2013) Low expectations: Attitudes on choice, care and community for people with dementia in care homes.  Executive Summary.  London: Alzheimer’s Society.

Brazil, K. et al. (2012) ‘Knowledge and perceived competence among nurses caring for the dying in long-term care homes’, International Journal of Palliative Nursing, 18, (2), pp. 77-83.

European Association for Palliative Care (2013) Palliative care: A human right.  International Association for Hospice and Palliative Care: EAPC Prague Charter.

Kelly, F. and Innes, A. (2010) End of life care for people with dementia: A best practice guide.  Stirling: Dementia Services Development Centre.

Mitchell, G., Agnelli, J., McGreevy, J., Diamond, M., Roble, H., McShane, E., Strain, J. (2015) ‘Optimising palliative and end of life care for people living with dementia in care home settings’, Nursing Standard, in press.

Moriarty, J. et al. (2012) End of life care for people with dementia living in care home.  Social Care Institute for Excellence.

World Health Organisation (WHO) (2012) WHO definition of palliative care.  WHO: Geneva

 

Authors

Gary Mitchell is a dementia care advisor for Four Seasons Health Care & Associate Editor of Evidence Based Nursing @GaryMitchellRN

Joanne Agnelli is a dementia services and quality manager for Four Seasons Health Care @JoanneAgnelli

Monica Diamond is a dementia care advisor for Four Seasons Health Care @Momodiamond1

Jessie McGreevy is a dementia care trainer for Four Seasons Health Care @McgreevyJessie

Herlindina Roble is a dementia care trainer for Four Seasons Health Care @Herlindina

Practice Experience and Implementation of Evidence

25 May, 15 | by rheale

By Roberta Heale @robertaheale @EBNursingBMJ

A few months ago I wrote about wholistic care and the implementation of acupuncture into my practice. I completed the first course in March and, this past weekend, just completed the second. I’ve taken an anatomical acupuncture program, which translates acupuncture from Traditional Chinese Medicine into a western medicine, anatomical perspective.  It has been an intensive and humbling experience.

I have been reminded that evidence based practice not only includes utilization of the best evidence and partnership with the patient, but also integration of the practitioner’s experience.  Patricia Benner, in her seminal work “From Novice to Expert. Excellence and Power in Clinical Nursing Practice” outlines the transition of nurses from the novice level, where everything is ‘parts’ to expert where situations are taken in as a ‘gestalt’.  I reflect upon this now as I take on a new challenge.

I’ve spent many years working as a nurse practitioner in family practice settings; before that as a registered nurse in acute care floors in hospital.  I had simply taken for granted the ‘muscle memory’ for familiar tasks like giving injections or performing examinations. The physical examination skills required to locate appropriate acupuncture points and the skill in ‘needling’ is different enough from my practice to knock me back to a novice state.  It’s been a long time since I was a novice in my practice and, I have to say, it’s frustrating!

I realize also that these are the physical skills related to acupuncture.  I have a long way to go before I have the intuitiveness to know the subtleties…the ‘feel’ of a needle, the reaction of a patient to the treatment…all the things that are now ingrained in my current practice.  It’s an uncomfortable place to be, but has renewed my empathy for student nurses and new grads as well as my appreciation for the process of implementation of research into practice. Implementation of evidence is much more than simply reading research and applying the findings.  The stage of expertise of the health care practitioner plays an important part of the process and influences the entire patient experience.

I’ll have to keep these things in mind as I begin to practice acupuncture.  I’ll try to be patient with myself and to be cognizant of the need for me to practice, practice, practice to move along the spectrum toward the expert level.

 

Shape of Caring Review: Impact for Children’s Nursing Education

17 May, 15 | by atwycross

 

Alison Twycross (@alitwy), Editor and Jo Smith (@josmith175), Associate Editor of Evidence-Based Nursing will be leading this week’s ENB Twitter Chat (#ebnjc) on Wednesday 20th May between 8-9pm UK time focusing on the recently published Shape of Caring Review: Raising the Bar (2015) (available from: http://bit.ly/1FQKGsU) and the implications for the education of children’s nurses. We hope that as many children’s nurses as possible join us.

Participating in the Twitter Chat requires a Twitter account; if you do not already have one you can create an account at www.twitter.com. Once you have an account contributing is straightforward:

  • Go to your Twitter account
  • Follow the discussion by searching for #ebnjc once linked to the discussion, click “all tweets” to keep up-to-date with recent tweets
  • Add the EBN chat hash tag (#ebnjc) to your tweets to join in, this allows everyone taking part to view your contribution

The recommendations from Shape of Caring: Raising the Bar (2015) review of models of education and training for nurse registrants and healthcare assistants in England include:

  • Exploring the ‘2+1+1’ model of training: two year training focusing on the whole person (physical and mental health), one year in a chosen specialism, followed by a full years preceptorship.
  • That the one year specialisms would include adult, child, mental health, learning disability and community nursing.
  • Having a greater focus on mental health issue across all specialists.
  • Having a strong grounding in critical inquiry to foster an ability to engage in research and implement research findings into everyday practice.

What appears to be being suggested is a return to a generic nurse education with two years focusing on the whole person and, for children’s nurses, one year focusing on the care of children. What worries us about this proposal is that it could herald a return to an old style common foundation programme, where often curricula were primarily focused on meeting the physical health needs of adult patients. This is in part due to the fact that in many Schools of Nursing the number of children’s nursing students is much lower than for adult nursing. This has sometimes resulted in students needing to undertake additional sessions to apply knowledge to caring for children, young people and families. Given that the new community field of nursing recommended by the Shape of Caring review appears to be for adults we are concerned that the needs of children and young people will not be adequately addressed under the Shape of Caring proposals.

It is important to remember that the proposals in Shape of Caring: Raising the Bar (2015) are currently recommendations and so as children’s nurses we have the opportunity to make sure our voice is heard. The purpose of this week’s Twitter Chat is to debate some of the key issues. In preparing for the debate you might want to read the following:

  • Royal College of Nursing (2007) Preparing the Child Health Nurse – fit for the future. Available from: http://bit.ly/1J5XAHl
  • Twycross, A. (2007) Modernising nursing careers: Implications for children’s nurses, Paediatric Nursing, 19(9): 39-40.

Both these documents present the argument for a children’s nurse fit for the future – a child health nurse. This nurse will be able to:

  • Care for children from 0-18 years with a physical illness and mental health issue
  • Care for children in the hospital and community
  • Care for children with a learning disability
  • Undertake health promotion activities with children, young people and families

This requires a child health nurse who is knowledgeable, skilled, and competent. The new child health nurse needs to have an understanding of and be knowledgeable about issues relevant to the care of children, young people and families including:

  • Family-centred care
  • Communicating with children of all ages and their families and how to engage in shared decision-making
  • Psychological theories of child development
  • Sociological theories of childhood
  • How children and young people’s anatomy and physiology differs from that of adults with different responses to therapeutic interventions across the age span
  • Children’s rights and balancing children’s right to participate in their health care decisions while ensuing the best interest of the child remain paramount
  • Ethical and legal guidance relevant to children of all ages
  • Pain assessment management for children aged 0-18 years
  • Safeguarding (child protection) polices
  • The public health agenda specific to children and young people

There are some areas where shared learning with other fields of nursing is appropriate such as: research methods and the skills to appraise and use the best available evidence underpinning care; health promotion and critical evaluation of the effectiveness of service and care delivery.

As children’s nurses we need to ensure that future nurse education equips the new child health nurse to meet the needs of children, young people and their families in an increasingly challenging health care environment with advancements in medical technology, changing disease profiles and the influence of lifestyle choices on health, and changing expectations. If we fail to ensure that we have an education system that equips the child health nurse for the future challenges we will be failing 22% of the population.

Questions to consider:

  1. How will the Shape of Caring recommendations impact on the education of children’s nurses and more importantly impact on the care provide to children, young people and families?
  2. Do you think a two year whole person approach followed by one year specialism will produce a child health nurse fit for purpose?
  3. How do you envisage the operationalization of the one year preceptorship?
  4. What is your vision for the child health nurse of the future?

 

Ordinary to extraordinary: skilled communication in nursing

11 May, 15 | by hnoble

Megan Blinn and Helen Noble

Queens University Belfast, Northern Ireland.

Communication is generally acknowledged as essential to nursing practice and managing clinical situations in challenging clinical environments, working within a system that serves increasing numbers of people with complex health needs using static or dwindling resources. There are many definitions of communication in the nursing literature. Riley defines communication as “a reciprocal process…between two or more people” (Riley 2012, p.3) and Petrie considers it “information which people send out to and receive from each other…” (Petrie 2011, p.17). Communication, therefore, refers to both a process and a product. The product may be verbal, non-verbal, written or electronic and the process must have as its goal a common understanding of the message that is sent and received in order to contribute to safe and effective care. Good communication is an advanced skill that develops from the innate human desire to relate to others. In order to achieve high level communication, a nurse requires self-awareness, willingness to listen, insight into other people’s needs and responses, and the ability to think logically and choose the most appropriate words at the right time. Communication barriers may be present in the nurse or the other persons with whom she communicates. In clinical settings, these barriers range from unchangeable attributes, for example, permanent cognitive deficits, to malleable ones such as differing languages, reduced consciousness or temporary inattention and an attempt to remove barriers or ameliorate their effects while managing clinical care is paramount.

Patient care is the ultimate function of clinical nursing and communication is the foundation of the nurse-patient relationship should be “open, honest and transparent” and suited to the needs and abilities of the patient or client with whom the nurse interacts. When nurses practise patient-centred communication, they are fulfilling the expectations of patients, regulatory bodies, and government. Where the communication is substandard, the management of patient care and outcomes are poorer In the recent investigation of care in the Mid Staffordshire National Health Service (NHS) Foundation Trust, poor communication played a part in almost every aspect of systemic failure (Francis, 2013). Though nurses were not solely at fault for these failures, nurses who fail to use communication and interpersonal skills appropriately are likely to fail patients who need high quality care and advocacy in hospitals struggling to serve them.

Though respect for and the duty of care to patients may encourage nurses to communicate well, respect for individuals should also underpin team interaction. Creating a work environment that encourages open communication contributes to a sense of well-being for nurses and can empower, build trust and improve clinical care. Unfortunately, many nurses work within systems where professional hierarchies might influence the way members of the healthcare team view one another; indeed, even those writing about the issue continue to use terms like “lower status health professionals” (Nembhard et al., 2011, p. 26), while critiquing problems arising when doctors, nurses and unregistered staff work together.

As stated, nursing is predicated on a helping relationship between two people but modern healthcare systems require a team of nurses working together within a multidisciplinary group to provide care for their patient or client. The responsibility for team functioning, and, ultimately for effective patient care, is divided between the organisation and the individuals within it. The organisation must be responsive to economic contingencies, service user needs, and the needs of the healthcare professionals. Nurses and other individual healthcare professionals must take responsibility for skills development which includes checking individual values, attitudes and beliefs that influence their practice and communication within and beyond their working team. It is beyond the scope of this assignment to look in detail at the deeper aspects of values, attitudes, beliefs and their impact on organisational culture but as the basis for individual actions they must be acknowledged.   Teams in contemporary clinical settings have not time to fully explore the emotional and psychological underpinnings for individual communications; however, every member of a team has a responsibility to acknowledge that each person, whether patient or nurse, has an inner experience that informs how they perceive clinical interactions and communication. Each person must ensure that they participate in assertive and open communication that enables teamwork and quality care for patients.

Communication is the ordinary human behaviour that may become the extraordinary skill employed by a nurse in the clinical setting to manage safe, effective, respectful care for every patient. Compassionate and respectful communication can also serve the team in which the nurse works by contributing to collaboration. Each nurse has a responsibility to develop communication skills alongside other clinical skills in order to meet professional requirements, serve patients and work with colleagues through the challenges of contemporary healthcare.

References

Francis QC, R. (2013) Report of the Mid Staffordshire NHS foundation trust public inquiry executive summary. London: HMSO. Available at: http://www.midstaffspublicinquiry.com/sites/default/files/report/Executive%20summary.pdf (Accessed: 13 November 2014).

Nembhard, I., Alexander, J., Hoff, T. and Ramanujam, R. (2009) ‘Why Does the Quality of Health Care Continue to Lag? Insights from Management

Research.’, Academy of Management Perspectives, 23(1), pp. 24–42.

Petrie, P. (2011) Communication skills for working with children and young people: introducing social pedagogy. 3rd edn. London: Jessica Kingsley Publishers.

Riley, J.B. (2012) Communication in nursing, 7th edn., St. Louis: Mosby-Elsevier.

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