You don't need to be signed in to read BMJ Blogs, but you can register here to receive updates about other BMJ products and services via our site.

Losing the Fight Against Obesity

26 Jan, 15 | by rheale

By Roberta Heale  @robertaheale

Look to any blog, news or health website and you’ll find a story about the world obesity epidemic almost every day from every angle: Financial http://bit.ly/1BVEdNF obesity programs http://bit.ly/1gd0Yi3 health http://bit.ly/1zLs3Y6 & http://huff.to/1zLtcyW & from the fashion and beauty industry etc. etc. etc.  Despite the news, the world is getting fatter and fatter and fatter.  The World Health Organization indicates

·  worldwide obesity has more than doubled since 1980.

·  In 2014, more than 1.9 billion adults, 18 years and older, were overweight. Of these over 600 million were obese.

·   39% of adults aged 18 years and over were overweight in 2014, and 13% were obese.

·   Most of the world’s population live in countries where overweight and obesity kills more people than underweight.

·   42 million children under the age of 5 were overweight or obese in 2013.

From: http://www.who.int/mediacentre/factsheets/fs311/en/

Most importantly, obesity is preventable.  Think about it.  What other epidemic has affected so many people?

As with all epidemics, nurses are on the front line in the fight against obesity.  Health care education and programs are important steps.  However we aren’t winning this war. Albert Einstein, is credited with saying “The definition of insanity is doing the same thing over and over again, but expecting different results.”  Given this, maybe we need to change our approach.

I just watched the movie The Imitation Game. It portrays the important work of another genius, Alan Turing, who refused to waste his time on the traditional code breaking techniques that were not making any headway in breaking the German code system used in WWll.  Instead he designed the first computer, which cracked the codes that were previously unsolvable.  Maybe we need to change our approach and think in an innovative and strategic manner with the ‘big picture’ in sight.

Advocacy and leadership are among the list of nursing competencies and nurses have been involved in many campaigns for health public policy.  There has been success in reducing smoking rates through strategic policies in some jurisdictions. Perhaps increasing our efforts in advocating for meaningful health policy changes will make a difference in the fight against rising obesity rates.  Success has already been achieved in my province through the implementation of policy removing vending machines with fat-promoting food from high schools.  It’s just a small start, but worth a try in the war against the obesity epidemic.

Non-Pharmacological Approaches for Alleviating Distress in Dementia Care

19 Jan, 15 | by josmith

Gary Mitchell, Dementia Care Advisor and Joanne Agnelli, Dementia Services Quality Manager for Four Seasons Health Care,  will be leading the next ENB TWITTER chat on Wednesday 21st January 8-9pm UK time, and will focus on non-pharmacological approaches for alleviating distress in dementia care. In order to participate in the EBN twitter chat, if you do not already have one, you require a Twitter account, you can create an account at www.twitter.com. Once you have an account contributing is straightforward; you can follow the discussion by searching for links to #ebnjc @EBNursingBMJ, or better still, create a tweet (tweets are text messages limited to 140 characters) to ENB the journal @EBNursingBMJ and add #ebnjc (the EBN chat hashtag) at the end of your tweet, this allows everyone taking part to view your tweets.

Estimates suggest that feelings of distress occurs in almost 80% of people living with dementia (James et al, 2008). Traditionally the management of distress was through the use pharmacological intervention, like Risperidone, Olanzapine, Quetiapine (Sink et al, 2005). While the use of these medications may be appropriate for some people living with dementia, the use of non-pharmacological approaches as a means to reduce distress is recommended because they can be more dignified and are in keeping with the ethos of person-centred care, and are more cost-effective when compared to the prescription and administration of medications (NICE, 2011). The approaches of reminiscence, reality orientation, validation, music therapy, horticultural therapy, doll therapy and pet therapy have proved popular techniques when considering non-pharmacological approaches for alleviation of distress in dementia care.

Reminiscence Therapy – focuses on assisting the person living with dementia to relive positive past experiences of their life and may be related to their family life, their wedding, the places they used to visit or the activities they used to carry out at work.

Reality Orientation – is about re-orientating the person living with dementia to their current environment. Orientation can be achieved directly through open communication between healthcare professionals and people living with dementia. In addition aids such as clocks, calendars, specialist dementia signage and personalisation of living spaces can also aid in assisting people living with dementia to recognise their surroundings.

Validation Therapy – centres on the idea of acceptance of another person’s reality. The clinical manifestations of dementia mean that sometimes people living with the condition may feel they are in another time or place. When healthcare professionals fail to validate a person’s feelings or reality this can intensify the level of distress a person is experiencing.

Music Therapy – is categorised as a sensory therapy which has generated positive results in relation to enhancement of wellbeing and alleviation of distress in dementia care. The personalisation of music therapy is an important element to consider so as to ensure that the person living with dementia actually finds the music, either being played or being listened to, as therapeutic.

Horticultural Therapy – or garden therapy has been emerging as a popular therapy in recent years. Horticultural therapy can be directed by healthcare professionals in a garden area and activities may be guided, for example the potting of plants, the sewing of seeds or the feeding of birds.

Doll Therapy – arguably the most contentious non-pharmacological approach on offer, doll therapy is often unstructured and engagement with the doll could be any number of things to include: talking to the doll, cuddling the doll, dressing the doll, playing with the doll or feeding the doll Benefits to doll therapy include: greater levels of wellbeing through improvement in communication, maintaining a safe environment and personal care. It should be noted that while there are a plethora of benefits associated with doll therapy, there are number of things that healthcare professionals need to consider in relation to doll therapy, the most of important of these is arguably ethical conduct as some critics of doll therapy believe it to be infantile, in that people living with dementia are encouraged to play with dolls like children.

Pet Therapy – is a popular but sometimes difficult intervention to source given the practicalities. Pet therapy or animal assisted therapy has shown positive results in people living with dementia who are fond of animals. The most popular animal used in this intervention is a dog.

Personalisation – Arguably the most important factor in all of these approaches is personalisation. These approaches to care are enhanced through life-history work (i.e. when a healthcare professional has taken the time to get to know the person living with dementia and understands their personality). The final point to note is that note that these approaches are important, not only in reducing episodes of distress, but actually enhancing the wellbeing of people living with dementia.

Possible Questions for Consideration:

What other examples of non-pharmacological approaches have benefited people living with dementia?

What is the difference between validating someone’s reality and telling lies in dementia care?

What is actually needed to utilise garden therapy effectively?

What are the ethical issues associated with doll therapy?

When the approaches described do not reduce distress is it always appropriate to seek anti-psychotic medication?

Is there a difference between distress and challenging behaviour?

References

James I, Mackenzie L, Pakrasi S et al (2008a) ‘Non-pharmacological treatments of challenging behaviour’. Nursing Residential Care 10, (5), pp. 228-32

National Institute for Clinical Excellence (2011) A NICE–SCIE Guideline on supporting people with dementia and their carers in health and social care. National Clinical Practice Guideline Number 42. HMSO: London

Sink, K., Holden, F. and Yaffe, K. (2005) ‘Pharmacological treatment of neuropsyciatirc symptoms of dementia: A review of the evidence’, Journal of American Medical Association, 293, (5), pp. 596-608.

Building communication bridges with information technology: Looking back as we leap forward.

12 Jan, 15 | by ashorten

It is now almost two years since I wrote a blog on the introduction of the electronic medical record (EMR) in our local health service.1 It was the day before the new EMR system went ‘live’ and clinicians were nervous about how it would affect their daily lives and, most importantly, communication with patients and families. At the time one of the doctors shared with me that he had real concerns about giving patients adequate ‘face to face’ time while simultaneously meeting the needs of the new computer record keeping system. It was clear to all that it would take extra time to provide and document care with the new system and there was going to be a steep learning curve in ways that had not even been anticipated. Since then, I have seen this same doctor on numerous occasions, interacting with patients and families. He still sits at the bedside talking to patients and families face to face without a computer in sight. He has clearly developed strategies to maintain this precious personal communication with his patients, while still feeding the computer with the necessary information for documenting patient assessment and response to care.

I am often amazed at how quickly new forms of technology become the norm. I cannot imagine life without a smartphone and easy access to the internet 24 hours a day is no longer a sophisticated luxury. On the healthcare frontline it has very quickly become normal to see nurses dragging their WOWs (workstation on wheels) and COWs (computers on wheels) between and around patient rooms in health care facilities. It also feels quite normal to see primary care providers logging on to the computer system as they enter the consultation room, pausing briefly to shake hands and introduce themselves, as they prepare to simultaneously and seamlessly discuss and document the reason for your visit. However, even after two years I see clinicians struggling with the demands of the new and often updated digital repository, robotically filling in the blanks as they appear on screen, searching for the right place to put things, sometimes frustrated that the information they are trying to input does not fit the information category provided by the program. At times it even appears that they are putting square pegs into round holes and crossing fingers that the clinician following them will be able to find key pieces of information being shared.

In my observation, some clinicians are better than others at establishing rapport and communicating to their patients that they are actually listening actively to their narrative, even though more often than not their eyes are fixed to their screens. I have observed clinicians who are masters in the art of maintaining just enough eye contact to communicate that they are interested in the story yet still diligent in capturing the details in the digital system. Others still use pen and paper to jot down notes as they give full attention and face the patient, choosing to document their findings at the conclusion of the consultation, checking with the patient that what they have gathered is correct, making sure they are both on the same page for plans moving forward. Clinicians have adapted to new technology in different ways, and in some cases the technology itself – designed to improve information sharing – has become a barrier to effective communication.

As expected, the digital natives seem to struggle less with new technology, accepting that EMRs are here to stay. Rather than fighting the inevitable, they quickly learn how to maximize the benefits of the systems and build upon them. They constantly look for ways to refine the capabilities of the system, so that the technology is working for them, rather than the other way around. We have much to learn about making the most of the EMR and the information within it, and this is a priority for nursing and healthcare research. We need evidence about the ongoing impact of EMRs on patient care and patient outcomes.

Putting these ongoing transitional challenges aside, there are many exciting ways for us to communicate with patients and to enhance information exchange. The EMR is only part of the larger puzzle, but it is likely to be an ever increasing conduit of communication between patients, families and clinicians in future healthcare.

Global interest in mobile health (mHealth) strategies, where information exchange can be integrated within systems of healthcare, including the EMR, has exciting possibilities for the future.2 There is great potential to expand our healthcare reach to populations where people have previously lived with an absence of high quality evidence-based information to promote their health. Now many more communities have access to mobile phone technology to access texting services, hotlines, telemedicine and new decision support ‘apps’. In particular, support of growth of mHealth in Lower and Middle Income Countries (LMICs) has been recognized as an important research priority with great potential for increasing use of evidence-based health strategies that make a real difference to population health.2

There is increasing excitement about the potential for interactive digital patient decision aids to be housed within or linked to the EMR. This will enable patients to receive the right information, at the right time, and for providers to communicate with patients as they interact with decision aids, clarifying values and preferences in preparation for shared decision making. Easy access to high quality evidence-based information is central to effective preparation for decision making. Health information technology provides greater capacity to engage patients, accommodate individual learning needs and bridge communication gaps than the more traditional paper-based tools (books, booklets, pamphlets etc.). We are still exploring questions about what can be achieved with digital modalities over paper-based tools but the field is promising.

With any innovation, it is important to have the necessary passion, vision, resources and evidence to overcome the barriers to achieving a change that is worthwhile and increases access to more effective models of care. We must keep one eye focused on the tipping point, to ensure that the technology we integrate into clinical practice does not create additional barriers to effective care and communication. We must never stop evaluating the care we provide and gathering evidence about the consequences to guide our decisions about which systems work best and how the best patient outcomes can be achieved.

Allison Shorten, RN RM PhD

Yale School of Nursing

References:

  1. Shorten A. (2013, February). Patient centered care and the electronic medical record, Evidence Based Nursing Blog (BMJ Group Blogs). http://blogs.bmj.com/ebn/2013/02/06/
  1. Mehl, G., Labrique, A. (2014) Prioritizing integrated mHealth strategies for universal health coverage. Science. 345 (6202), pp. 1284-1287. http://www.sciencemag.org/content/345/6202/1284.full.pdf

Perinatal mental health disorders

4 Jan, 15 | by josmith

Charlotte Kenyon, Senior Lecturer and Midwife, University of Huddersfield will be leading this week’s ENB twitter chat on Wednesday the 7th of January between 8-9pm focusing on ‘perinatal mental health disorders’.  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 – follow the discussion by searching links to #ebnjc @EBNursingBMJ, or better still, create a tweet (tweets are text messages limited to 140 characters) to @EBNursingBMJ and add #ebnjc (the EBN chat hash tag) at the end of your tweet, this allows everyone taking part to view your tweets.

Shortly before Christmas, across the United Kingdom the tragic story of the death of Charlotte Bevan and her daughter Zaani unfolded. Sadly, her story is not unique. Pregnancy and birth are usually one of the happiest occasions in a woman’s life, but for many this is not the case. Perinatal mental ill health represents an area of high human cost, through both maternal morbidity and mortality and the impact on the long-term health and wellbeing of children. There is a recognised deterioration of mental health among women in general with increasing numbers of non-pregnant women experiencing depression, anxiety and even suicidal thoughts. However, despite an increasing public awareness of mental health in pregnancy, three quarters of women featured in the most recent confidential enquiry into maternal death had some form of pre-existing mental illness.

Perinatal mental health disorders are classified according to the severity of symptoms and may range from transient emotional disorders such as postnatal ‘blues’ through to more serious experiences of stress, anxiety and depression. Depression during and after pregnancy may range from mild to moderate, for which primary care will normally be the most appropriate course of action, through to severe postnatal depression for which specialised and sometimes in-patient treatment may be required (DH 2003). Postnatal depression (PND) is just one element of perinatal mental health, classified as DSM-IV; it is a major depressive disorder within one month of birth and affects between 10 and 20% of pregnant women. Depressive symptoms frequently start during pregnancy (Gavin et al 2005, Stowe et al 2005, Freeman 2009). A small number of women will go on to develop severe prolonged psychotic illness, puerperal psychosis.

There are a number of recognised risk factors which include a known history of depression, reduction in income and a perceived loss of control. Marital difficulties, the absence of a supportive partner, loss of income and loss of supportive networks associated with absence from work are also known contributory factors (Johansen et al 2000, Bowen and Muhajorin 2006, Hanley 2009), as are a history of sexual or physical abuse and domestic violence (National Mental Health Development Unit (NMHDDU) 2010). There is an increasing body of opinion that suggests that stress and anxiety relating to pregnancy itself play a significant role in the development of mental ill health in pregnancy.

Of the women who access mental health services in pregnancy antenatal depression affects between 6.5 and 50 per cent of all pregnant women (Bennett et al 2004, Gavin et al 2005, De Tychey et al 2005, Stowe et al 2005, Bowen and Muhajorin, 2006). Given the prevalence of antenatal depression, some suggest that routine screening of all women should be implemented (Bowen and Muhajorin, 2006). NICE guidelines have made recommendations about mental health in pregnancy since 2007 (NICE 2007), but how has this benefitted Charlotte Bevan and others like her.

Question for consideration:

Do we have good examples of services, able to provide for women experiencing mental health difficulties in pregnancy, or does the system not care?

References and further reading:

Bennett, H., Einarson, A., Taddio, A., Koren, G., and Einarson, T., (2004) Prevelance of depression during pregnancy:systematic review Obstetrics and Gynaecology, 103, 698-709.

Bowen, A., Muhajorine, N., (2006) Antenatal depression: nurses who understand the prevalence, signs and symptoms, and risk factors associated with antenatal depression (AD) can play a valuable role in identifying AD and preventing the sequelae in pregnant women and their families, Canadian Nurse, 2006 Nov; 102(9): 27-30.

De Tychy C., Spitz E., Briancon S., et al (2005) Prenatal depression and coping: a comparative approach. Journal of Affective Disorders 85, 323-326.

Department of Health (2003) Mainstreaming gender and women’s health: implementation guide DH, London.

Freeman MP (2009) Complementary and Alternative medicine for perinatal depression Journal of Affective Disorders 112, 1-10.

Gavin, N., Gaynes, B., Lohr, K., Meltzer-Brody, S., Gartlehner, G., and Swinson, T., (2005) Perinatal depression: A systematic review of prevelance and incidence, Obstetrics and Gynaecology 106, 1071-1083.

Hanley J., (2009) Perinatal mental health: a guide for health professionals and users, Wiley-Blackwell.

Johanson R., Chapman G., Murray D., et al (2000) The North Staffordshire Maternity Hospital prospective study of pregnancy associatd depression, Journal of Psychosomatic Obstetrics and Gynaecology 2000, 21(2) 93-97.

National Mental Health Development Unit (NMHDU) (2010) Working towards Women’s Wellbeing: Unfinished Business NMHDU, London.

NICE (2007) National Institute of Clinical Excellence Clinical Guidelines on Antenatal and Postnatal Mental Health NICE, London.

Festive bog and a time to reflect

29 Dec, 14 | by josmith

The festive season is well underway and often a time to reflect on the year’s events. This year, as in previous years, nursing and healthcare has often dominated the news both in terms of local nursing issues, national challenges in the provision of robust and effective health services and global health issues. The weekly Evidence Based Nursing (EBN) blog has enabled the editorial team and our guest bloggers to raise issues that not only have personal resonance but are thought provoking, often responding quickly to current policy and health issues. Below I have highlighted some of the ENB blogs that I found particularly interesting throughout the year.

In February, I wrote a blog entitled ‘are nurses inspirational’, outlining the bravery and dedication of British nurse, Edith Cavell who treated allied soldiers of all nationalities and assisted their escape from German-occupied Belgium during World War One, highlighting the compassion and dedication that epitomises nurses and their work throughout history and in current nursing practice. This contrasted with the frustration experienced by Jackie Vasey, guest blogger, who’s blog ‘back to square one’ in April, described her disappointment that despite an abundance of evidence promoting effective pain management in children, effective pain management remains variable with children continuing to experience moderate to severe pain.

In July Roberta Heale, Associate Editor’s, blog ‘RN staffing in hospitals…are we asking the right question’, discussed the thorny issues of adequate staffing levels and the often simplified presentation of related issues including stress, burnout, and retention of nursing staff, highlighting that the changing nature of nursing is rarely addressed or considered, and the workloads of nurses is a much more complex issue.

In August, my blog ‘ebola – a global health problem’, highlighted that ebola has a 90% fatality rate, with an urgent need to identify effective treatments and develop safe immunisation programmes, which contrasted with Allison Shotten, Associate Editor’s blog in September ‘expanding our toolkit for supporting shared decision making’ and the challenges in making shared decision-making a reality when healthcare service resources are stretched. Shared decision-making relates to my own research interests, collaborating effectively with children and families. In light of the immediacy of the ebola outbreak may seem inappropriate, yet information sharing and giving patients a voice in decisions about their care are central to health care delivery where there is an increase in individuals living with long-term conditions and have developed considerable expertise in the management of their condition.

November and December featured three guest blogs; Julie Taylor and Chris Jones focusing on recent research on ‘disabled children and the child protection system’; Nova Corcoran, focused on ‘the rights of the child in nursing and healthcare’ and David Garbutt , focusing on ‘end of life care’. All blogs were linked to the EBN Journal Chat #ebnjc (8-9 pm UK time, on the first and third Wednesday each month) offering readers the opportunity to participate in discussions about the blog posted that week. The twitter chats were particularly lively and a reminder of nurses’ passion in striving to do the best they can for the individuals and their families in need of care and support.

What has struck me again this year is the commonalities of issues facing nurses across the globe, and the inspirational work nurses undertake in a range of contexts, cultures, organisations and settings, and often remain largely invisible. Nurses strive to deliver high quality care despite increasing economic pressures and a need to speak out if care failings are witnessed, and the need to prepare the nurses of the future to be critical reflective thinkers that can deliver evidence based care with comparison. However, variability in practice and challenges in translating evidences into practice remain. Perhaps moving forward into a new year, it is timely to think about what evidenced based nursing is ‘an ongoing process by which evidence, nursing theory, and the practitioner’s clinical expertise are critically evaluated and considered, in conjunction with patient involvement, to provide the delivery of optimum nursing care for the individual’ (Scott & McSherry 2009, p 1089). I am sure many of the issues posted and debated will continue to dominate the nursing, and the healthcare, agenda in 2015. This is the last ENB blog for this year, so here’s wishing you all a fantastic holiday season and prosperous new year.

Jo Smith, Senior Lecturer Children Nursing, University of Huddersfield, Associate Editor EBN Tweet me @josmith175

End of year ramblings: Living in a gendered society

22 Dec, 14 | by atwycross

I am going to have a moment or two of self-indulgence as I write this Blog and reflect on some of the things I have been pondering this year. As ever it has been an action packed year not only did I move out of London (and so am now a proper commuter). I also made my first visit to South America and feel privileged to have been editor of Evidence Based Nursing (EBN) for another year.

One of the things that saddens me as we approach the end of 2014 is that we still appear to live in a gendered world. The Church of England might have moved forward in relation to gender equality by agreeing to ordain women as bishops but society as a whole still has a long way to go. I had lunch with a couple of friends earlier this month – we have known each other just over 20 years and have all had relatively successful careers but none of us have had children. The question one of them posed was whether or not we would have achieved what we had if we had had children. I suspect the answer is no – as women with children we would probably have made different life choices. Even in 2014 it is difficult to juggle motherhood and a career. Paradoxically some people still seem to think that a woman not having children is abnormal (see for example: http://www.telegraph.co.uk/women/womens-life/9847642/Helen-Mirren-confronts-the-final-female-taboo.html). Did I expect to be approaching my 50th birthday and not have children – no. Do I regret the choices I have made along the way – no.

Another example illustrating that we still live in a gendered world was when during a family holiday to Center Parcs in May my 3 year old nephew went to a fairy and wizards activity. The people leading the activity were upset that he wanted to be a fairy (like his sister and two female cousins). As someone who was brought up 40 years ago on “William wants a doll” (see: https://www.youtube.com/watch?v=Lshobg1Wt2M) I find it hard to believe that a 3½ year old boy wanting to dress up as a fairy is still an issue.

It also appears to me that despite recent changes the English childcare courts favour the mother even if dad has been main carer – again providing evidence that we are still a gendered society. There seems to be a general assumption that young children should always stay with the mother when a couple split up. This may be true most of the time but it is not always the case. As someone who spends a significant time looking at what the evidence says my question is: surely it would be better to look at the evidence on a child by child basis rather than assuming the mother is best person to have custody?

So as we look ahead to 2015 let’s take some time to reflect on what our gender assumptions are and endeavour to move to a place where people are judged for who they are rather than be categorised by gender (or some other label).

I would like to thank everyone who has contributed to EBN over the last year by, for example, subscribing to the journal, taking part in our Twitter Chat or reading our Blog. As a nurse I feel very lucky to have two weeks holiday over Christmas. My thoughts will be with those of you working over the festive period.

Alison Twycross

Editor: Evidence Based Nursing

Head of Department for Children’s Nursing and Reader in Children’s Pain Management, London South Bank University

Cachexia and it’s impact on people with renal disease:

15 Dec, 14 | by hnoble

Dr Joanne Reid and Dr Helen Noble, Lecturers, from Queens University Belfast, will be hosting this week’s ENB twitter chat on Wednesday the 17th of December between 8-9pm focusing on ‘cachexia in renal disease’ 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 – follow the discussion by searching links to #ebnjc @EBNursingBMJ, or better still, create a tweet (tweets are text messages limited to 140 characters) to @EBNursingBMJ and add #ebnjc (the EBN chat hash tag) at the end of your tweet, this allows everyone taking part to view your tweets.

Cachexia is diagnosed when a person loses weight, suffers muscle atrophy, fatigue, weakness, and significant loss of appetite. It is defined as loss of body mass that cannot be reversed nutritionally. This loss in lean body mass indicates a primary pathology is in place. Cachexia occurs in many chronic conditions such as cancer, acquired immune deficiency syndrome, chronic obstructive pulmonary disease, chronic heart failure, rheumatoid arthritis and chronic kidney disease (CKD). Chronic kidney disease denotes abnormal kidney function and/or structure. The definition of CKD is based on the presence of kidney damage or decreased kidney function indicated by a glomerular filtration rate <60 ml/minute per 1·73 m² for three months or more, irrespective of clinical diagnosis.

In patients with chronic kidney disease (CKD) managed with or without dialysis, the prevalence of cachexia has been reported to range from 30-60%. The pathophysiology of cachexia in CKD is known to be multifactorial. Previous research has established that while reduced food intake may contribute to cachexia, additional factors such as dysregulated appetite controlling hormones, inflammation, abnormal neuropeptide signaling, insulin resistance, and metabolic acidosis may also be associated with its pathogenesis in CKD. Most notably, cachexia is manifested by weight loss and specifically loss of lean muscle mass. It is this amplified loss of lean muscle mass that distinguishes cachexia from weight loss due solely to reduced food intake. Starvation and cachexia represent two distinct types of malnutrition that may be present in people who have advanced CKD. These discrete nutritional deficits have very different pathophysiologies. Central to this distinction, is that starvation is typically not associated with inflammation or reduced serum albumin levels, whereas cachexia is characterized by systemic inflammation and low serum albumin concentrations. Adequate dialysis and intensive dietary support often reverse deteriorating nutritional parameters in persons with CKD who have starvation. It is much more challenging to improve the nutritional status and body composition in people who have renal cachexia. This is because cachexia results not only from a combination of reduced nutritional intake (similar to starvation) but also profound metabolic alterations.

A number of potential treatment modalities for cachexia in advanced CKD have been examined including exercise, nutritional supplements, appetite stimulants, growth hormones, and ghrelin agonists. However, research has not determined the most effective means of anti-cachectic therapy. No research to date has examined the subjective experiences of individuals who have advanced CKD and cachexia and there are no data to delineate the patients’ experience of this phenomenon and that of those caring for them (See Reid et al http://www.ncbi.nlm.nih.gov/pubmed/23432742 ).The current emphasis is largely placed on the anatomical, physiological and pathological issues central to cachexia in advanced CKD. Qualitative research methods can provide a more holistic exploration of the complexities of renal cachexia associated with CKD and interpretation of the data can help to shape future care delivery to address unmet psychosocial needs in this client group. The twitter blog on Wednesday evening aims to discuss cachexia in a renal population and how we can commence research looking at the impact of this syndrome on patients their lay and professional carers with a view to understanding this state of ill health.

Advance Care Planning: Where Does it Begin? Roberta Heale @robertaheale

8 Dec, 14 | by rheale

Last week’s EBN Twitter chat “End of Life Care; One Chance to Get it Right” highlighted the important issue of the care of those who are dying.  As nurses, we are all encouraged to individualize care and to ‘start the conversation’ with patients about their wishes, but where does this start?  What does it entail?   I think we would all agree that the best time to initiate discussions early…hopefully before palliation, hospitalization, or a catastrophic event that prevents a person from extending how they would like to die.  In fact, I suggest that the conversation should start with people that the patient knows, and who know the patient well; in primary health care.

The discussion about advance care planning is a process of reflection and communication.  Patients and families may reflect on their values and wishes, and let others know their future health and personal care preferences in the event that they become unable to consent or refuse treatment (CHPCA, 2014).  Advance care planning is ongoing and may include the patient, his/her family and substitute decision-maker as well as healthcare providers.  Advance care planning may be informal, or formal.  It may include development of an end-of-life plan of care with appropriate legal documentation.  Although there are parts of Advance Care Planning that nurses may not be comfortable or competent to enact, entering into a discussion with a patient about their wishes is a vital first step (Sudore & Fried, 2010).

Most people in the developed world die as a result of chronic diseases.  These conditions are often diagnosed and monitored in primary healthcare settings well before end of life. Health care staff, including nurses and NPs working in primary health care, get to know their patients well. Because of this, they are in a unique position to initiate advance care planning discussions with them before they enter into the palliative stages.   In fact, patients and their families are often waiting for health care providers to initiate Advance Care Planning discussions (Davison & Simpson, 2006; Jackson et al., 2012).

In clinic several months ago, I sent a patient for testing and he was diagnosed with a cancerous tumor.  He has received treatment from the Cancer Treatment Centre in our city, but continues to come to the primary health care clinic for renewal of routine medications. He’s brought his wife to his recent appointments.  I took the time at the last appointment to ask him if he had thought about end of life care…being sure to add that I wasn’t expecting this imminently! He and his wife relieved to discuss their plans and he told me that he was grateful that I brought it up since he now felt more comfortable approaching the clinic for assistance in making his death a good one, when the time came.  With my assistance, the patient and his wife were connected to a social worker who helped them to complete legal documents, such as  ‘power of attorney’ and a ‘living will’.

By initiating advance care planning discussion with patients, the nurse may help to increase the patient’s satisfaction and reduce stress, anxiety, and depression. Substitute decision makers also have reduced stress, particularly in knowing their loved one’s wishes (Detering, Hancock, Reade, & Silvester, 2010).

Nurses play an important role in the care of patients who are dying, at every stage.  We shouldn’t be hesitant to ensure our patients have had the opportunity to express their wishes and to help them formalize them in preparation for the life journey ahead.

Canadian Hospice Palliative Care Association (2014).  Speak Up. Advance Care Planning Retrieved from:  http://advancecareplanning.ca/

Davison, S. N., & Simpson, C. (2006). Hope and advance care planning in patients with end stage renal disease: Qualitative interview study. British Medical Journal, 333, 886-889.

Detering, K. M., Hancock, A. D., Reade, M. C., & Silvester, W. (2010). The impact of advance care planning on end of life care in elderly patients: Randomised controlled trial. British Medical Journal, 340(1345), 1-9.

Jackson, J., White, P., Fiorini, J., Shay, J. T., Derderian, L., Ayotte, J., & Osgood Hall, R. (2012). Family perspectives on end-of-life care. Journal of Hospice & Palliative Nursing, 14(4), 303-311.

Sudore, R. L., & Fried, T. R. (2010). Redefining the “planning” in advance care planning: Preparing for end-of-life decision making. Annals of Internal Medicine, 153(4), 256-262.

 

 

 

 

 

 

End of life care – one chance to get it right?

1 Dec, 14 | by josmith

David Garbutt, Lecturer in End of Life Care, from the University of Salford, will be hosting this week’s ENB twitter chat on Wednesday the 3rd of December between 8-9pm focusing on ‘end of life 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 – follow the discussion by searching links to #ebnjc @EBNursingBMJ, or better still, create a tweet (tweets are text messages limited to 140 characters) to @EBNursingBMJ and add #ebnjc (the EBN chat hash tag) at the end of your tweet, this allows everyone taking part to view your tweets.

‘We’re at a turning point. End of life care is on the agenda. We have a chance, as never before, to get it right’. Tony Bonser, Chair of People in Partnership Group, NCPC and Dying Matters

The past 12 months have been a watershed for end of life care in the UK. Last year was the half-way point in the 10 year end of life care strategy. The Neuberger review into the Liverpool Care Pathway highlighted the variable practice in care for dying patients and families across the country. The subsequent One Chance to Get it Right document outlined the need to individualise care, to focus on the person and not the paperwork and put people and their families at the centre of decisions about their treatment and care. The Government in the Mandate to NHS England for 2014-15 has identified end of life care as a priority area ‘where the Govenment is expecting particular progress to be made’. However with the demise of the Liverpool Care Pathway, the challenges of addressing a sense of mistrust from certain areas of the popular press, and the developing discussions around physician assisted suicide for the terminally ill patient, new ways of delivering effective evidence based care to dying patients and their families must be developed. End of life care should be individualised yet consistent and underpinned by evidence is a fundamental right, so how can such care be commissioned, delivered, measured and improved for all dying patients? What challenges does the future hold? Is this an exciting and opportunistic time to refresh the end of life care agenda or will hard won momentum be lost in wake of restructuring and reordering?

Questions for consideration:

Despite 70% of the public stating they are comfortable talking about death, most have not discussed their end of life wishes or put plans in place. How can we make conversation about planning for our death normal?

What personal and professional development do nurses and other health and social care professionals require in order to deliver effective end of life care?

How can we meet the needs of all dying patients and their families, irrespective of their age, gender, geographical location and setting, disability, diagnosis, or long-term condition/s, sexual orientation, socio-economic status, or ethnicity?

Do we Promote Children’s Rights in relation to Consenting to and Refusing Treatment?

23 Nov, 14 | by atwycross

I am undertaking a module on the sociology of childhood at the Institute of Education. One of the things we have discussed is the United Nations Convention on the Rights of the Child (UNCRC) (United Nations 1989) which is 25 years old this month. As last week’s Twitter Chat and Blog focused on children’s rights I thought I would continue this theme and reflect on children’s rights in relation to consenting or refusing medical treatment. In England, Wales and Northern Ireland children under the age of 16 years can legally give their consent to their own medical treatment if they satisfy the criteria of Gillick competence that is “if they have sufficient understanding and intelligence to enable him or her to understand fully what is proposed” (Gillick 1986).

The reality of clinical practice

However, the reality in clinical practice is very different. Adolescents appear able to consent to treatment but not refuse it. For example, in the case of Re R (A Minor) (Wardship: Consent to Treatment) [1992] Fam 11 CA the Court of Appeal made it clear that a Gillick competent adolescent had the ability to consent to treatment but that if they should refuse the treatment, consent can be given by someone else with parental responsibility over the child or the court. No child has been deemed Gillick competent when it comes to refusing life-saving treatment in the UK (Gorgy 2012). This is in part because the level of competency children are expected to demonstrate is unattainable (even for adults) (Jackson 2009, James & James 2004). On a day-to-day basis, in clinical practice, anecdotal evidence suggests children are considered competent if they agree with the health care professionals’ views and incompetent if their view differs. Indeed the law allows for a child’s refusal to have medical treatment to be challenged if it is deemed life threatening even if the child is considered competent (Cave 2011). Clearly children are not always considered competent to make decisions on their own behalf. This perhaps links back to a perception of children as becomings rather than beings and as such lacking rationality and needing protection (Lee 2001, Tisdall & Punch 2012). This is despite a plethora of evidence suggesting children are competent to make their own health care decisions (Alderson 1993, James & James 2004).

Can agency explain why children are not seen as competent to make health related decisions?

Agency may help explain, at least in part, some of the issues relating to children consenting to and/or refusing to treatment. Agency relates to the individual competence of children (James 2011). It has been argued that children by the very nature of their immaturity do not (yet) have the ability to make appropriate choices and that these skills are only acquired by learning, effort and practice (Purdy 1992). A recent study added to this conjecture concluding that the neuro-anatomical development of the brain and emotional and experiential capacity is not fully developed until the early-20s for girls and the mid-20s for boys (Mendelson & Haywood 2014). While others argue that even young children and neonates have agency (Alderson et al. 2005). From the examples provided above it would appear that within health care children’s do not always have agency. A perception that children lack agency may be why their views are often over-ruled or not taken into account when decisions about their health care are being made.

What does this mean for health care professionals?

I think in the month the UNCRC turns 25 years old health care professionals should reflect on whether we need to change our practices and perhaps start to challenge the interpretation of the law. It appears ridiculous that children are seen competent to consent to treatment but not to refuse it. Surely if they are able to do one they should be able to do the other? Does something magical happen when a child becomes 16 years old and suddenly they are deemed competent to refuse treatment? Are we more worried about the implications for us if a child dies who we have allowed to refuse treatment? Does it come back to the over medicalisation of death and the apparent need to carry on treating children who are clearly terminally ill? Let me know what you think.

Alison Twycross

Head of Department for Children’s Nursing and
Reader in Children’s Pain Management
London South Bank University

References

Alderson P (1993) Children’s consent to surgery. Open University Press, Buckingham.

Alderson P, Hawthorne J & Killen M (2005): Are premature babies citiziens with rights? Provision rights and the edges of citizebship. Journal of Social Sciences 9, 71-81.

Cave E (2011) Young people who refuse life sustaining treatment: A briefing paper on current law and the need for refrom. School of Law, University of Leeds., Leeds.

Gillick (1986): Respondent v. West Norfolk and Wisbech Area Health Authority.

Gorgy M (2012): Article 8 and minors’ right to refuse medical treatment. The Student Journal of Law.

Jackson E (2009) Medical Law Text, Cases and Materials, 2nd edn. Oxford University Press, Oxford.

James A (2011) Agency. In The Palgrave Handbook of Childhood Studies (Qvortrup J, Corsaro, W.A., Honig, M-S., ed.). Palgrave Macmillan, Basingstoke, pp. 34-45.

James A & James AL (2004) Constructing Childhood: Theory, Policy and Social Practice, 3rd edn. Palgrave Macmillan, Basingstoke.

Lee N (2001) Childhood and Society. Open University Press, Buckingham.

Mendelson D & Haywood J (2014): Minor’s decision-making capacity to refuse life-saving and life-sustaining treatment: Legal and psyhciatric perspectives. Joirnal of Law and Medicine 21, 762-773.

Purdy L (1992) In their best interest? The case against equal rights for children. Cornell University Press, New York.

Tisdall EKM & Punch S (2012): Not so “new”? Looking critically at childhood studies. Children’s Geographies 10, 249-264.

United Nations (1989): Convention on the Rights of the Child. United Nations, New York.

 

Analysis and discussion of developments in Evidence-Based Nursing

Evidence-Based Nursing blog

Analysis and discussion of developments in Evidence-Based Nursing. Visit site

Latest from EBN

Latest from EBN