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Dignity in palliative care across the lifespan

18 Jul, 16 | by josmith

Dr Alison Rodriguez, Lecturer Child and Family Health, University of Leeds2016-07-15 11.02.52

This week’s EBN Twitter Chat on Wednesday 20th July between 8-9 pm (UK time) will be hosted by Alison Rodriguez (@ARodriguez339) Lecturer Child and Family health, University of Leeds and will focus on ‘dignity in palliative care across the livespan. Participating in the Twitter chat requires a Twitter account; if you do not already have one you can create an account at Once you have an account, contributing is straightforward. You can follow the discussion by searching links to #ebnjc, or contribute by creating and sending a tweet (tweets are text messages limited to 140 characters) to @EBNursingBMJ and add #ebnjc (the EBN Twitter chat hash tag) at the end of your tweet, this allows everyone taking part to view your tweets.

Patient dignity is a core value/aim of palliative care across the lifespan. Personal dignity is often discussed in relation to independence, so as we become more dependent on others through illness, it is assumed that we lose some of our dignity, or our sense of dignity. Indeed, there are claims that a loss of dignity encourages individuals to seek an assisted or hastened death (Chochinov, 2012). The model of dignity conserving care was developed to provide holistic direction for health professionals (Chochinov, 2002). This model, derived from (adult) patient experience, identifies 3 aspects of dignity:

  1. Illness related – bodily concerns/problems, symptom distress.
  2. Dignity conserving repertoire – individual to the patients psychology and spiritual beliefs – continuity of the self, role preservation, legacy, conserving pride, hope, autonomy, control, acceptance and resilience.
  3. Social dignity – the quality of interactions with others – privacy, boundaries, social support, care tenor, burden to others, bereavement concerns.

Question to consider before the Twitter Chat:

  1. How do you define dignity? What supports your sense of dignity?
  2. Is the model of dignity conserving care relevant to all palliative care populations (including younger populations)?
  3. Given service constraints, are we providing dignified palliative care?
  4. Do we have sufficient access to dignity related palliative/end of life care education and training? Are training needs identified?
  5. To achieve dignity in palliative care should we be reaching out beyond dedicated services and look more at encouraging cultural change? Developing supportive communities? How can this be achieved?

Useful reading

Chochinov, H. M. (2002) Dignity conserving care: a new model for palliative care. JAMA, 287, 2253-2260.

images-1Chochinov, H. M. (2012) Dignity therapy: Final words for final days. Oxford: Oxford University Press.

Wegleitner, K., Heimerl, K. & Kellehear, A. (2016) Compassionate communities: case studies from Britain and Europe. London: Routledge.


Breast feeding research: reflections on the evidence-base

11 Jul, 16 | by josmith

Jo Smith (@josmith175) Associate Editor at Evidence-Based Nursing and Lecturer Children’s Nursing, School of Health Care, University of Leeds.


I have always been committed to teaching and promoting that patient care is underpinned by robust evidence. However, it is increasingly challenging to keep abreast of new evidence, let alone the time to appraise and consider the quality of the evidence, appraise research and consider the implications for practice: a good systematic review is often a life-line in an increasingly demanding world. One of the reasons I enjoy my role as associate editor at Evidence-Based Nursing (EBN) is that it enables me to review and consider research on a wide range of topics, and engage and debate the implications of research with experts in the field. Sharing information, through our published commentaries, networking and using social media are core to the journals objectives.

Promoting breast feeding is a global health priority with a vast evidence base highlighting the benefits of breast feeding to provide young infants with the nutrients they need for healthy growth and development. Despite most mothers being able to breastfeed the World Heath Organisation’s 5th target is to increase the rate of exclusive breastfeed infants in the first 6 months up to at least 50%: Shot 2016-07-11 at 20.37.25df






A recent commentary I edited for EBN highlighted that ‘breast feeding could reduce the risk of childhood leukaemias’ (, which highlighted yet again the protective properties of breast milk. The systematic review and meta-analysis that compared no or short duration of breastfeeding with breastfeeding for 6 months or more, and childhood leukaemia (Amitay et al, 2015) found that:

  • Breastfeeding reduces the risk of all childhood leukaemias; the effect is greater if feeding continued for more than 6 months.

It was a pleasure to interview Dr Colin Michie, Consultant Paediatrician, about his thoughts on the evidence and discusses issues raised in his commentary of the meta-analysis: a recommendation from the commentary was that infant feeding histories should become a central components of paediatric data, in order to identify the potential benefits of breast feeding in relation to childhood illnesses in addition to leukaemias. For more insights listen to the podcast:


Amitay EL, Keinan-Boker L. Breastfeeding and Childhood Leukemia Incidence: A Meta-analysis and Systematic Review. JAMA Pediatr. 2015 Jun;169-175.

Reaching Families with Evidence-Based Health Information

4 Jul, 16 | by atwycross

This week’s EBN Twitter Chat on Wednesday 6th July between 8-9 pm (UK time) will focus on reaching families with evidence-based health information. The Twitter Chat will be hosted by Dr Christine Chambers (@drcchambers) and Dr Abbie Jordan (@drabbiejordan). This Blog provides some context for the Chat. The examples given relate to paediatric pain but the principles apply to pain in patients of all ages.

Participating in the Twitter Chat

Participating in the Twitter chat requires a Twitter account; if you do not already have one you can create an account at Once you have an account contributing is straightforward, You can follow the discussion by searching links to #ebnjc, or contribute by creating and sending 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.

Reaching Families with Evidence-Based Health Information

Families are increasingly going online for health information about their children. Unfortunately, the quality of the information they find there is usually questionable at best. It can take as many as 17 years for research findings to find their way into improvements in clinical practice. It can take even longer for research results to find their way into the hands of parents and families who need them. more…

When Parkinson’s Disease meets Dementia: a Palliative Research Priority

26 Jun, 16 | by hnoble

Dr Clare Mc Veigh (Lecturer in Palliative Care) and Gemma Megarry (Research Volunteer), Northern Ireland Hospice.

CMcVResearch Volunteer final

Parkinson’s disease and Dementia are both diseases in which the brain will become more and more damaged over many years. Parkinson disease is a neurodegenerative disease characterised by motor symptoms such as resting tremor, rigidity (stiffness), bradykinesia (slowness of movement) and postural instability (balance problems). However many patients with advanced PD can also experience nonmotor symptoms such as depression, pain, psychosis, cognitive problems, hallucinations and more commonly dementia. Dementia is also caused by neurodegeneration which results in the unavoidable and gradual deterioration of the person’s cognitive function, and their ability to live independently. The occurrence of dementia in people with PD is increasingly being recognised and can cause particular challenges to the patient and their family, inclusive of behavioural and functional problems. When a person has Parkinson’s motor symptoms for at least a year before experiencing dementia, this is known as Parkinson’s Disease Dementia (PDD).

A European study concluded that the incidence rate of PDD was 74 per 1000 patient-years, with the cumulative risk of developing PDD being 25% after 5 years, and 50% after 10 years of follow-up (Perez et al. 2012). Previous research has additionally estimated that the incidence rate of a dementia in patients with PD is at least four times higher than it is in the general population (Williams-Gray et al. 2009). Dementia can also be present not only in the advanced stages of the illness but from the onset of PD having an impact on the person’s quality of life, and implications for public health and the cost of care (Irwin et al.2013). However dementia is often only recognised later in PD due to the prominent nature of the patient’s motor symptoms.

Palliative care has a key role to play in the provision of care to people with PDD due to the complexity of their holistic symptom need, and the life-limiting nature of the illness. Healthcare professionals provide palliative care in order to help improve the physical, psychosocial and spiritual well-being of their patients and their families, and to aid patients and their carers to have the best quality of life possible. The integration of palliative care early within the disease trajectory can help to improve the management of a patient’s symptoms. Originally, the only patients who had access to palliative care services were those with a diagnosis of cancer and nearing the end of their life. More recently however, it has been recognised that palliative care is also applicable to patients with a non-malignant disease and is an integral part of a patient’s disease management from diagnosis. Despite this awareness, access to specialist palliative care can often still be limited for patients with non-malignant conditions such as PD and a dementia. The need for a model of palliative care for patients with PD and a dementia, to help optimise the provision of holistic care, has been recognized.

Parkinson’s UK previously consulted with people with PD, carers and healthcare professionals to identify the 10 priority areas that need researched to help improve the lives of people with PD. Exploring how we can best care for people with PD and a dementia was recognised as one of these key priorities. The Palliative and end of life care Priority Setting Partnership (PeolcPSP) further identified a need to explore the best ways to determine the palliative care needs of patients with a non-cancer diagnosis, such as PD and dementia, whilst also illuminating the importance of discovering how this care can be initiated and provided. There is a lack of empirical evidence regarding the palliative care experienced by people with PDD, and how this care may be provided. A deeper insight into the holistic symptom needs of this specific group of patients is required, with further exploration of how to optimally deliver palliative care.


Irwin, D.J., Lee, V.M.Y. and Trojanowski, J.Q. (2013) ‘Parkinson’s disease dementia: convergence of [alpha]-synuclein, tau and amyloid-[beta] pathologies.’ Nature Reviews Neuroscience. 14 (9), pp.626-636.

Perez, F., Helmer, C., Foubert-Samier, A., Auriacombe, S., Dartigues, J.F. and Tison, F. (2012) ‘Risk of dementia in an elderly population of Parkinson’s disease patients: A 15-year population-based study.’ Alzheimer’s & Dementia. 8 (6), pp.463-469

Williams-Gray, C.H., Evans, J.R., Goris, A., Foltynie, T., Ban, M., Robbins, T.W., Brayne, C., Kolachana, B.S., Weinberger, D.R., Sawcer, S.J. and Barker, R.A. (2009) ‘The distinct cognitive syndromes of Parkinson’s disease: 5 year follow-up of the CamPaIGN cohort.’ Brain. 132 (11), p.p.2958-2969

Nurse Practitioners in Canada: A Few Steps Forward

19 Jun, 16 | by rheale

As of this month Canada joined the small number of countries across the globe that have legalized assisted suicide.  The regulation titled “Medical Assistance in Dying” was hotly debated by the public, media, and all levels of federal government. In this way the legislation wasn’t different from any that are closely tied to personal values and ethical viewpoints.  However, one very significant difference in this law was that it specifically identified not only physicians, but also nurse practitioners (NPs) as the health care providers who may implement assistance in dying.  As an NP and the President of the Canadian Association of Advanced Practice Nurses, representing NPs in Canada, I was very excited that NPs were finally being recognized for the autonomous and comprehensive care.

Nurse practitioners are advanced practice nurses who have completed graduate education and written a licensing exam. So, unlike some APN roles and unlike some countries, in Canada NP’s licence to practice is separate from that of the RN.  NPs have been practicing in Canada for over 40 years, but regulation within each jurisdiction (provinces and territories) commenced in Ontario in 1998 and NPs are now regulated across Canada.

Nurse Practitioners are fully autonomous health care providers which means that we conduct physical assessment, order diagnostic tests, diagnose conditions and prescribe medication and other treatments for our patients independently, without physician supervision.  Our scope of practice in every province and territory is the same. We implement research evidence into our practice and to ensure the care we provide is patient directed- not just the treatment of the disease.  Nurse practitioners practice in all settings and with all types of patients – primary care clinics, hospital settings, home care, palliative care, First Nations Communities.  Nurse practitioners often work with vulnerable patients and in locations where they are the only access to health care, such as nursing stations in rural and remote areas.

Study after study demonstrates nurse practitioner practice results in positive health outcomes such as reduction in blood pressure for a person with a diagnosis of hypertension or improved blood sugar control in a person with diabetes.  Patient satisfaction is high with NP care and studies show that NPs enable better self -care for conditions such as mental health, diabetes, breathing disorders and high blood pressure.

Despite the success of the NP role, it hasn’t been without difficulties.  There have been, and continue to be, ongoing barriers to practice which have the potential to reduce access to all care for our patients. The Canadian Association of Advanced Practice Nurses was invited to present to the Justice Committee and to the Senate with respect to the legislation.  We submitted a brief related to wording and specific issues in the proposed regulation and sent a message to each Member of Parliament and Senator by email.  Despite this, an amendment was put forward by a senator that wasn’t related to the criteria or process of assisted dying, but rather related to NP scope of practice.  The amendment, although rejected, would essentially have restricted NP’s scope of practice by requiring them to be supervised by a physician. Our concern was for patients of NPs and access to care, so there was relief when the amendment was rejected.

The issue is bigger than this legislation. There is a need for ongoing marketing of the NP role, both with legislators and the public so that NP practice is understood and the value of NPs in health care is well known.  NPs will have to continue to advocate for our patients to ensure that they are able to receive comprehensive care.  However, this isn’t a time for pessimism. Although there were hiccups in the process, NPs inclusion in the bill for medical assistance in dying was an important step in the recognition of the role of the NP in Canadian healthcare and we’re excited to see what happens next.


Roberta Heale, President of the Canadian Association of Advanced Practice Nurses, Associate Editor Evidence Based Nursing  @robertaheale  @EBNursingBMJ

To Tweet or not to Tweet

12 Jun, 16 | by josmith

Copyright Image - Mark Pearson Photography

IMG_0206This weeks EBN Twitter Chat on Wednesday 15th June between 8-9 pm (UK time) will be hosted by Kirtsen Huby (@KirstenHuby) and Joanna Smith (@josmith175) Lecturer’s in Children’s Nursing, University of Leeds and will focus on ‘to tweet or not to tweet’ in relation to social media and healthcare.



Participating in the Twitter chat requires a Twitter account; if you do not already have one you can create an account at Once you have an account, contributing is straightforward. You can follow the discussion by searching links to #ebnjc, or contribute by creating and sending a tweet (tweets are text messages limited to 140 characters) to @EBNursingBMJ and add #ebnjc (the EBN Twitter chat hash tag) at the end of your tweet, this allows everyone taking part to view your tweets.

Twitter was started by Jack Dorsey in 2006 with the first tweet being sent on March 21 (; Twitter now has 310 million monthly active users ( Over the last 10 years Twitter is being used in many different ways within organisations, by professional bodies and individuals. There are guidelines and policies on how to use social media professionally and an emerging evidence base for the use of Twitter. It is therefore timely to consider whether ‘to tweet or not’.

Benefits of using Twitter in healthcare include increased engagement with students, colleagues and patients (Ferguson, 2013), developing networks and communities (Moorley and Chinn, 2014) often across geographical boundaries (Richardson et al., 2016) and enabling the ‘real-time’ sharing of information and discussion during conferences (Ferguson et al., 2014). By making research data, findings and publications available to the public it is possible to make research more accessible (Lupton, 2014) which may promote evidence based practice and discussion around the research that is conducted. As with all social medial platforms there are concerns. As Twitter enables us to have conversations with no restrictions on who can engage there may be a blurring of personal and professional personas (Eggers and McGonigle, 2012) which some may find uncomfortable. There is also the risk of feeling overloaded by the volume of information available (Eggers and McGonigle, 2012) or feeling pressured to engage, the one reason NHS Employers (2014) gives as not a valid reason to engage.

The use of social media is now a part of life for many of us on a daily basis. We choose how we wish to engage and with whom, the platforms we use and the information that we share. Increasingly social media is utilised in our professional lives. This may be because we see benefits to doing this, the organisation we work for requires us to use it or our patients, students or colleagues wish to engage this way. For some people this may feel as though their choices in regards to the use social media are restricted.

image1Question to think about before the Twitter Chat:

  1. Why do you think nurses should use Twitter as a means of communication?
  2. What are your experiences of using Twitter as a means of sharing information and networking?
  3. How can we make tweeting accessible and relevant so that people choose to engage?



Readiness for Change: No Easy Answers

6 Jun, 16 | by rheale

The concept of patient readiness to make positive lifestyle changes has been on my mind lately. I’ve often used Prochaska and DiClemente’s Stages of Change Model to evaluate the stage of change of a person and to guide my approach to health promotion activities for such things as counseling people to stop smoking or implement exercise into their daily lives. It includes pre-contemplation, contemplation, preparation, action, maintenance, relapse.

It looks straightforward, but it’s anything but.  Of all the steps, the one that seems to be the most difficult for people is from preparation to action, or actually implementing the positive lifestyle change.

A quick search for research about factors related to readiness to change an aspect of lifestyle show that while there are a great number of articles about evaluating the stages of change, there is little about factors that influence readiness of an individual to make this change. The articles that do identify factors related to readiness for change demonstrate the complex nature of readiness as well as the numerous individual factors associated with each situation.

The role of nurses in readiness for change isn’t entirely clear to me.  We educate, coach, or guide people to make positive lifestyle changes, but how many people actually make the changes?  What needs to be in place to move people to a state of readiness for change?  I recently participated in research that offers one interesting insight.  In a survey of patients at a family practice clinic, people who were able to see their primary health care provider on the day that they requested an appointment were significantly more likely to indicate that they had made a lifestyle change. Perhaps then, accessibility to care at a time that a person wants to see their provider, is also a time when they are ‘more ready’ to receive information, education and support for lifestyle changes.  This association needs to be confirmed, but it’s certainly worth further exploration.

Nurses work to help people achieve a healthy lifestyle and optimum health.   It’s important for us not only to develop programs that meet people’s need for information and provide the resources to do so, but also to consider the intangible element of readiness for change.

Roberta Heale, Associate Editor of EBN, @robertaheale @EBNursingBMJ


Creating Nursing Leaders to Translate Evidence into Practice

24 May, 16 | by ashorten

Yesterday was graduation day for a wonderful group of future nursing and midwifery leaders in our school. We launched 92 new “Yale Nurses” from our Master of Science in Nursing, Doctor of Nursing Practice (DNP) and PhD programs. As our students walked proudly across the stage, supported by the cheers of faculty, family and friends, I began to think about their exciting new opportunities and future responsibilities as current and future nursing leaders.

Our profession seems to be constantly evolving and redefining educational essentials to keep up with the ever-changing landscape of healthcare. Expectations of our clinical nursing leaders have moved far beyond proficiency in a specialized area of clinical care. Clinical nursing leaders face increasing demands to provide expertise in project management, informatics, bioethics, navigating the business of healthcare, developing and applying healthcare policy, and implementing evidence-based nursing care to meet the healthcare needs of diverse patient populations.1,2 A new cadre of nurse leaders is currently embracing this professional challenge in the United States (US) by completing their Doctor of Nursing Practice (DNP) qualification. Yale School of Nursing (YSN) just graduated our second cohort of DNPs – 14 new nurse leaders in total.

DNP programs have spread across the US in recent years, with over 240 DNP programs currently available nationally.3 Traditionally, PhD programs have been the pathway to a terminal degree for nurses and midwives. PhDs provide rigorous research training, enabling nurses and midwives to make significant contributions to the body of knowledge within our disciplines. Graduates of PhD programs can provide the answers to important research questions, generating evidence to inform practice. The DNP is also a terminal degree, yet it offers something quite different to that of a traditional research doctorate. While research leaders with PhDs expand our evidence base, DNP leaders focus their skills on implementing the evidence through innovation in clinical practice and evidence-based health policy.

There has been much debate in the US about the relative merits of different types of doctoral level study for advanced practice nurses and nursing leaders, and the discourse continues regarding how each might fit within the healthcare system.  There are currently a wide variety of clinical DNP programs available for advanced practice specialty nursing and also DNPs specifically for leadership and policy. 2 The DNP graduates I applauded as they walked across the stage yesterday were mid-career leadership and policy DNPs. Examples of their evidence-based projects include “Building an Evidence Based Succession Planning Tool for Chief Nursing Executives” – Stephan Davis; “Design of an Evidence-Based Mentorship Program for Inpatient Nurse Practitioners” – Kimberley Ennis; ”Development and Validation of an Electronic Medical Record Information Prioritization Tool for Evidence-Based Diabetes Management” – Caroline Piselli;  and “Implementing the Point of Care Integrated Breast Cancer Screening Model” – Jill Muhrer. Implementing evidence-based models of care through the development of innovative tools, programs and policies was a consistent project theme.

There was much excitement around the contribution each new DNP graduate had made to their clinical community, healthcare organization and patient population – each making a difference and leading the way to strengthen the profession for the future and making improvements in population health. It will be interesting to see how DNP programs are shaped over time and exciting to see how these new nurse leaders are able to use their expanded skillset to increase the pace at which we are able to implement evidence-based healthcare delivery for the future.


American Association of Colleges of Nursing. (2006). The Essentials of Doctoral Education for Advanced Nursing Practice. Washington, DC:

American Association of Colleges of Nursing. (August 2015). The Doctor of Nursing Practice: Current Issues and Clarifying Recommendations.

American Association of Colleges of Nursing (July 2014) Doctor of Nursing Practice (DNP) Talking Points


Allison Shorten PhD RN RM FACM

Associate Professor

Yale School of Nursing


15 May, 16 | by josmith

This week’s EBN Twitter Chat will be held on Wednesday the 18th of May between 8-9 pm (UK time) and will be hosted by Kelly Young who is the Children’s Theme Team Lead for the Yorkshire and Humber Clinical Research Network (@mrskellyyoung) and will focus on the #whywedoresearch campaign.

Participating in the Twitter chat requires a Twitter account; if you do not already have one you can create an account at Once you have an account, contributing is straightforward. You can follow the discussion by searching links to #ebnjc, or contribute by creating and sending a tweet (tweets are text messages limited to 140 characters) to @EBNursingBMJ and add #ebnjc (the EBN Twitter chat hash tag) at the end of your tweet, this allows everyone taking part to view your tweets.

At EBN promoting research that underpins nursing is one of our core values: our research made simples series is one way of helping nurses understand research, the series can be accessed via our web site or the link below, with many article free to download:

#whywedoresearch campaign @mrskellyyoung

In 1995 I qualified as a Registered Nurse (Adult) and was one of the first Staff Nurses to emerge from Project 2000 image002programme at Mid Trent College of Nursing and Midwifery in Lincolnshire. Soon after qualifying I embarked on a career in neonatal nursing. Fast forward 20 years and I have, and still am, enjoying a fantastic and fulfilling nursing career in neonatal care. In 2010 I became a research nurse supporting families and clinical teams through research care pathways. In 2015 I became the Bradford based Children’s Theme Team Lead for the Yorkshire and Humber Clinical Research Network (CRN)

My role is to focus on increasing good quality research opportunities for children and their families that will ultimately improve care and outcomes for future generations; which is most definitely my own personal ‘#whywedoresearch’!

I was excited to become one of the first #whywedoresearch ambassadors in 2015. I embraced this opportunity recognised the benefits to being involved, which for me are to engage colleagues, children and families in research. #whywedoresearch has huge potential to engage and unite all stakeholders in research through a simple interaction, simple but powerful. The engagement of clinical colleagues including nursing staff cannot be underestimated as we move towards a culture whereby research opportunities for patients are embedded in clinical care. Kelly Young RGN, @mrskellyyoung

15030213_Neonatal_Childrens_Research_Poster_D2 (2)


Some things to think about before the Twitter Chat:

Why do you think nurse should understand, undertake and implement research?

What are the challenges facing nurse researchers?

What are the challenges in relation to undertaking research with children?



Advance care planning with people who have kidney failure

9 May, 16 | by hnoble

Peter O’Halloran, Lecturer, Queens University Belfast


A couple of years ago I was discussing the demise of the Liverpool Care Pathway with colleagues in one of our local hospitals. We had just completed some research [1] exploring some of the reasons for the failure of the pathway – one of which was the difficulty clinicians of all stripes have in discussing death and dying in a timely way. Often the discussion, if it happens at all, takes place when the person is only days away from death, with the risk that communication with the patient and family takes place in the midst of fear and uncertainty. My colleagues thought advance care planning might be part of the solution to this problem.

Advance care planning (ACP) has been defined as a process of discussion between an individual, their care providers, and often those close to them, about future care.[2] It may lead to an advance statement of preferences; an advance decision to refuse treatment (ADRT); or to the appointment of someone with lasting power of attorney. It seemed an area of practice with considerable potential – and ripe for research; but which patient group should I focus on? ‘You should look at people with end-stage renal disease,’ said my colleague, Helen Noble (@helnoble). That didn’t seem obvious to me, but it was difficult to get away from the idea – partly because I share an office with Helen but mostly because, when I looked into the literature, I discovered a group of people who might well benefit from advance care planning. Here are the facts:

The prevalence of moderate to severe chronic kidney disease (defined as stages 3-5 CKD) has been estimated at 6-8.5% amongst adults in the UK [3–5] and at over 30% in those aged 75 and over. [4] It’s associated with rising risks of hospitalisation, cardiovascular events, cognitive impairment and death.[6] The rapidly growing minority of older patients with CKD who progress to end-stage kidney disease (ESKD) are at even greater risk, as they exhibit the mixture of functional decline and co-morbidity typical of frail older people. [7] However, a substantial proportion of patients and their families do not discuss end-of-life care (including withdrawal of dialysis, ICU admission, involvement of specialist palliative care, cardiopulmonary resuscitation, and place of death) with health professionals.[8] To compound the matter, the high incidence of impaired cognitive capacity amongst patients with ESKD limits their ability to make informed choices and places additional decision-making burdens on their families.

Helen introduced me to an array of enthusiastic renal clinicians (doctors and nurses with a deep commitment to enhancing quality of life for their patients) and we formed a research team which included people living with renal disease, and some experienced trialists – and slowly a research proposal took shape.

Fast-forward to the present and we are just about to start a feasibility study for a trial of advance care planning with older patients who have end-stage kidney disease – the ACReDiT study ( Identifier: NCT02631200). Hopefully this deferred entry randomised controlled trial, side-by-side with a mixed methods process evaluation, will pave the way for a full multi-centre trial to see whether (and how) advance care planning really works for patients and their families.

1       McConnell T, O’Halloran P, Donnelly M, et al. Factors affecting the successful implementation and sustainability of the Liverpool Care Pathway for dying patients: a realist evaluation. BMJ Support Palliat Care 2014;:bmjspcare – 2014–000723 – . doi:10.1136/bmjspcare-2014-000723

2       Royal College of Physicians. Advance care planning. Concise Guidance to Good Practice series. London: : Royal College of Physicians 2009.

3       Stevens PE, O’Donoghue DJ, de Lusignan S, et al. Chronic kidney disease management in the United Kingdom: NEOERICA project results. Kidney Int 2007;72:92–9. doi:10.1038/

4       Roth M, Roderick P, Mindell J. National Statistics Health Survey for England – 2010, Respiratory health. Leeds: : The Health and Social Care Information Centre 2011.

5       Jameson K, Jick S, Hagberg KW, et al. Prevalence and management of chronic kidney disease in primary care patients in the UK. Int J Clin Pract 2014;68:1110–21. doi:10.1111/ijcp.12454

6       National Collaborating Centre for Chronic Conditions. Chronic kidney disease. London: : Royal College of Physicians 2008.

7       Anderson S, Halter JB, Hazzard WR, et al. Prediction, progression, and outcomes of chronic kidney disease in older adults. J Am Soc Nephrol 2009;20:1199–209. doi:10.1681/ASN.2008080860

8       Arulkumaran N, Szawarski P, Philips BJ. End-of-life care in patients with end-stage renal disease. Nephrol Dial Transplant 2012;27:879–81. doi:10.1093/ndt/gfs028

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