End of Life Journal Archives

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A daughter’s experience of her mother’s death in hospital

Anonymous

Key to improving palliative and end-of-life care is recognising the end-of-life phase. Without training relating to identification of signs and symptoms indicative of the terminal phase of disease, care of dying patients and their relatives/loved ones will not improve. Analysis of individual deaths may improve systems of care provision and... Read full article

A Palliative Holistic Approach to MND Using Music Therapy

Dr Helen Mackinnon, Elizabeth (Liz) Upham

This article details the role of music therapy (MT) in the palliative care of a 66-year-old woman (Liz) living with severe disabilities caused by motor neurone disease. It forms part of a small but growing body of case-related evidence designed to support the use of MT in palliative care. It... Read full article

A Rehabilitation Training Programme at the End of Life

Frances Cane, Rebecca Jennings, Jenny Taylor

Terminally ill patients face many challenges with regard to increasing physical dependence on others to meet their practical needs. Progressive weakness, profound fatigue and gradual deconditioning make daily tasks increasingly difficult to perform. Rehabilitation techniques do not lie solely within the role of physiotherapists and occupational therapists. They are an... Read full article

A walk through bereavement theory

Isabel Dosser

This paper examines and discusses specific grief theories that have emerged over a number of years, resulting in an overview of some of the main theories for the reader. It aims to inform nurses and encourage further exploration of the subject, ultimately resulting in an evidence-based approach to bereavement support. Read full article

Acceptability of Namaste Care for patients with advanced dementia being cared for in an acute hospital setting

Kimberley St John, Jonathan Koffman

Background Despite a quarter of acute hospital beds being occupied by people with dementia, many hospitals lack appropriate services to meet their holistic needs. Namaste Care is a sensory programme that has been developed to meet the spiritual needs of people in the more advanced stages of dementia. It has... Read full article

Achieving Quality End-Of-Life Care in the Acute Hospital Setting: The New ‘How to’ Guide

Anita Hayes

Since the publication of the national End of Life Care Strategy (Department of Health, 2008), a number of initiatives, tools and publications have been produced to support improvement in end-of-life care service provision. In 2010, the National End of Life Care Programme (NEoLCP) published The Route to Success in End... Read full article

Achieving Quality End-Of-Life Care Within the Prison Population: New Guidance

Anita Hayes, Tes Smith

Over 85,000 people are currently being held in prisons across England and Wales (Ministry of Justice, 2011; Berman, 2012), and this figure is expected to rise to nearly approximately 95,000 by 2017 (Ministry of Justice, 2011). The number of older prisoners is therefore expected to increase and predictions indicate that... Read full article

Advance Decisions to Refuse Treatment in Cases of Dementia

Joanna Davies, Rob George

Evaluating someone’s mental capacity in relation to advance decisions to refuse treatment can be a challenge for health professionals, particularly in cases of dementia. The Mental Capacity Act 2005 clarifies and formalises the functional assessment of capacity. It aims to protect individual autonomy and counter the assumption that, just because... Read full article

Advance decisions: worth the paper they are (not) written on?

Richard Huxtable

Law and policy in England and Wales permit individuals to set down, in advance of future incapacity, their wishes as to what medical treatment they would want—and, particularly, not want—to receive in the future. A House of Lords Select Committee has, however, recently found that the reality of advance decision-making... Read full article

Altered Sense of Body Image in Palliative and End-of-Life Care

Amanda Stamper

In palliative and end-of-life care, holistic patient assessment involves considering patients’ physical, psychological, social and spiritual concerns. As part of psychological assessment, it is important to discuss with patients their perception of body image and whether it is affecting their interactions with others and their ability to live their life... Read full article

Assessing best interests in end-of-life care for a patient in a minimally conscious state

Martin Curtice

The legal basis and principles for the lawful withholding of life-sustaining treatment from people in a minimally conscious state have been laid out in the Supreme Court judgment in Aintree University Hospitals NHS Foundation Trust (Respondent) vs James (Appellant) [2013]. This was the first case under the Mental Capacity Act... Read full article

Assessment of a Breathless Patient in End-Stage Heart Failure in A&E

Marie Ranson

Breathlessness is a common reason for the hospitalisation of people with chronic heart failure (CHF). It is a distressing symptom for both patients and their informal carers. Breathlessness in CHF derives from physical, psychological, social, spiritual and environmental factors. Optimal management of breathlessness in CHF requires both pharmacological and non-pharmacological... Read full article

Assessment Of Depression When Patients Desire A Hastened Death

Helen Scott

Patients’ mental health status is an important element of palliative and end-of-life care. However, depression is often under-recognised in terminally ill cancer patients. That is because symptoms of depression can mimic those of advanced cancer and clinicians often think that patients’ low mood is an understandable reaction to terminal illness.... Read full article

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Barriers to Effective End-Of-Life Nursing Care Out-Of-Hours

Nicola Hillman

The End of Life Care Strategy recommended that terminally ill patients living at home must have access to community out-of-hours end-of-life care services. The Strategy particularly emphasised that rapid-response community nursing services should be made available in all areas, 24 hours a day, 7 days a week. The lack of... Read full article

Breathlessness, Thirst and Anxiety in the end Stages of Heart Failure

Clare Young

Heart failure is associated with a high symptom burden, which can have a negative effect on the life of the person with heart failure as well as their relatives/loved ones. One of the main symptoms of heart failure is breathlessness, which reduces the ability of the person to maintain independence... Read full article

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Care home or home care? Difficult decisions for people with dementia and their carers

Michael Wortley

The majority of people, including people with dementia, would prefer to be cared for in their homes until the end of their lives. However, that is often dependent on the ability of an informal carer (a family member or friend) to provide care at home. Caring for a person with... Read full article

Care of Breathlessness in a Hospice Patient With Advanced Lung Cancer

Gemma Hodge

Lung cancer has a high symptom burden, leading to poor physical and psychosocial functioning and reduced quality of life. Dyspnoea (breathlessness) is one of the most common symptoms experienced in the advanced stages of lung cancer. It is the subjective sensation of breathing discomfort and can be a continuous symptom... Read full article

Caring for a Head-Injured Patient with Terminal Agitation in A&E

Fran Gallosi

The predominant culture within accident and emergency (A&E) departments is to save lives. Consequently, end-of-life care (EoLC) may be given low priority in the A&E setting. As death approaches, patients may become restless, agitated or delirious. All potential causes of agitation at the end of life should be considered, assessed... Read full article

Case Law on Artificial Nutrition and Hydration Since Bland

Dr Martin JR Curtice

The legal basis and principles for the lawful withdrawal of artificial nutrition and hydration (ANH) from people in a persistent vegetative state (now termed permanent vegetative state), was laid out in the case of Anthony Bland, who sustained catastrophic and irreversible brain damage as a result of being crushed during... Read full article

Challenges of Domiciliary Carers when Providing End-of-Life Care

Heather Watson

Given the choice, most people would prefer to be cared for and die at home, if they are assured of high-quality care and proper support for their families/carers. Domiciliary care workers play a large role in the care of terminally ill people at home. However, the experiences of patients and... Read full article

Communication vignettes: ‘Being with’ a patient who is distressed

Helen Scott

Communicating with dying people means more than just imparting information. It is about being physically and emotionally present with patients. The following communication vignette deals with the issue of ‘being with’ dying patients, as defined by Dame Cicely Saunders, the founder of the modern hospice movement. Dame Cicely Saunders wrote... Read full article

Communication Vignettes: ‘I don’t think I can cope, nurse’

Helen Scott

Dementia is a progressive, life-limiting disease (Jolley, 2010; National End of Life Care Intelligence Network, 2010; Hennings et al, 2013). Over time, people with the condition can decline, both cognitively and functionally (Schneider et al, 1999; DeKosky and Orgogozo, 2001; Tor ti et al, 2004; Hennings et al, 2013). The... Read full article

Communication vignettes: ‘What have I done to deserve this?’

Helen Scott

Patients who ask ‘What have I done to deserve this?’ are usually articulating spiritual distress. However, nurses often feel uncomfortable discussing spiritual concerns and have difficulty recording spiritual assessments (The Marie Curie Palliative Care Institute and Royal College of Physicians, 2009). That may be due, in part, to the fact... Read full article

Communication vignettes: ‘You must get her out of bed, nurse!’

Helen Scott

The advanced stages of disease can be associated with a great deal of distress for patients and their loved ones (Lobb et al, 2006; Murray et al, 2010; Candy et al, 2011). For example, families/friends of terminally ill people can become confused, fearful, experience despair and helplessness (Maher and Hemming,... Read full article

Communication Vignettes: ‘What if I meet “Old Nick”, Nurse?’

Helen Scott

Regardless of whether or not older people have a life-limiting illness, they are aware that they are in the final stages of their lives. The very end phase of life can be a significant cause of distress (Lloyd-Williams et al, 2007; Gott et al, 2008). Death remains a mystery and,... Read full article

Communication Vignettes: She wants her misery to end, nurse!

Bruno Bubna-Kasteliz

In palliative and end-of-life care, holistic patient assessment involves considering patients’ physical, psychological, social and spiritual concerns. As part of psychological assessment, it is important to discuss with patients their perception of body image and whether it is affecting their interactions with others and their ability to live their life... Read full article

Communication Vignettes: Talking About Death in Dementia

Helen Scott

In this issue of the journal, Julie Watson highlights how people with dementia often become depersonalised. As dementia progresses, carers may stop seeing the human being behind the condition, attributing all behaviour to pathology. However, despite behavioural change and loss of cognitive function, people who have dementia retain their sense... Read full article

Communication vignettes: Telling a child that her dad is dying

Vicky Robinson

Traditionally, palliative care emergencies are associated with physical, often reversible, clinical signs (e.g. spinal cord compression and hypercalcaemia). However, palliative care practitioners can sometimes find themselves in a situation where there is an urgent need to communicate with a family member or friend of a terminally ill patient (Pickering and... Read full article

Complementary Therapy: Comfort for Those in Need Of Palliative Care

Marcos Viliotti

Traditionally, complementary therapies have been associated with relaxation therapies (Monti and Yang, 2005). However, the help and comfort resulting from complementary treatments go beyond what might be considered simply a ‘feel good’ factor (Pujol and Monti, 2007). Complementary therapies are now being used alongside orthodox treatments to help provide physical... Read full article

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Death and Dying in Intensive Care: Emotional Labour of Nurses

Lucy Ryan, Jane Seymour

Intensive care unit (ICU) nursing is associated with emotional labour. ICU nurses regularly care for dying patients. End-of-life care (EoLC) can be a major cause of stress in ICU, particularly in relation to the withdrawal of life-sustaining treatment, managing the transition from curative care to EoLC and dealing with the... Read full article

Dementia special interest group: shared learning across dementia, palliative and end-of-life care domains

Karen Harrison Dening, Marie Cooper

There is a growing impetus to improve care for people with dementia at the end of life and facilitate better access to palliative care. Some settings and services are concerned that they are ill equipped to care for this group of people, in respect to environment and knowledge and skills.... Read full article

Developing National Standards for Hospice-at-home Services

George Bell, Kay Greene, John Hunt, Sue Varvel

There is minimal consensus regarding what constitutes hospice home care and hospice-at-home services. Such services have developed in an ad-hoc manner since the concept of hospice care at home was originally conceived by the Sisters of Charity at St Joseph’s Hospice, Hackney, and then more formally developed by St Christopher’s... Read full article

Do-not-attempt cardiopulmonary resuscitation (DNACPR) notices and the law

Martin Curtice, Caroline Winkle, Wasan Bajallan

The legal basis and principles for the application and use of do-not-attempt cardiopulmonary resuscitation (DNACPR) orders has been laid out in the Court of Appeal judgement in Tracey, R v Cambridge University Hospitals NHS Foundation Trust & Ors [2014a]. This case involved a 63-year-old woman, Mrs Tracey, who had been... Read full article

Dyspnoea In Copd: The Effect on Functional Ability and Carers

Rebecca Jennings

Chronic obstructive pulmonary disease (COPD) is a complex, progressive, respiratory condition. The primary symptom of COPD is dyspnoea (the subjective experience of breathing discomfort). Worldwide, COPD is a leading cause of morbidity and mortality. Due to the progressive nature of COPD, limitation of functional ability increases proportionally to disease severity,... Read full article

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Eating/Feeding Issues in Dementia: Improving the Dining Experience

Louisa Stone

People with dementia can have problems eating/feeding, which puts them at risk of malnutrition. There are various reasons why people with dementia find eating and/or feeding problematic, including difficulty co-ordinating movements in order to get food into their mouths, difficulty maintaining attention on eating, dysphagia, level of cognitive and physical... Read full article

Emotional Distress in Patients with Advanced Heart Failure

Christina Ramsenthaler

Chronic heart failure (CHF) is a leading cause of death, with a rising prevalence. The disease has a high symptom burden and a negative impact on patients’ quality of life. However, as a result of difficulties in prognostication in relation to CHF, palliative care services do not always become involved... Read full article

Encouraging/Supporting Dying Parents to Talk to Their Children

Steve Marshall, Julia Manning, Sally Mercer

Communicating with children about the anticipated death of a parent can be very challenging, even for experienced palliative care professionals. It can be particularly difficult for dying parents to discuss the fact that they are dying with their children. Consequently, they may adopt an overly positive stance in order to... Read full article

End-of-life care for patients on haemodialysis

Mitesh Patel, Jyoti Baharani

Many patients with chronic illness will require end-of-life (EOL) care. This is the case with many patients who suffer from chronic kidney disease. When patients start haemodialysis (HD), the nuances of care for kidney disease take over. Often, when these patients reach the EOL, this is not always recognised, resulting... Read full article

End-of-life care for the British Asian Hindu Community: Preferences and Solutions

Sarah Frearson, Jane Henderson, Bharti Raval, Charles Daniels, Geraldine Burke, Jonathan Koffman

Background: In the UK, most people prefer to die at home but many still die in hospital. People from black, Asian and minority ethnic groups are even more likely to die in hospital. Little is known about their preferences for location of care at the end of life. Aim: To... Read full article

End-of-life care in a case of severe anorexia nervosa and end-stage liver disease

Martin Curtice, Wasan Bajallan, Caroline Winkle

This article reviews a Court of Protection case involving a woman, Ms X, with two severe medical conditions: anorexia nervosa and end-stage liver cirrhosis due to alcohol dependence. Each of these conditions alone warranted end-of-life care planning. When combined, they provided a far more unique and complex presentation because of... Read full article

End-of-life care is everybody’s business

Penny Hansford

The last 5 years have seen the largest number of reorganisations the NHS has ever known. Social care budgets have been cut by 20% at the same time as the demographic impact of people living longer with multiple co-morbidities is being realised (Local Government Association and Association of Directors of... Read full article

Experiences of palliative care nurses in the utilisation of palliative sedation in a hospice setting

Irene Dwyer, Joan McCarthy

Background Palliative sedation, or bringing about a state of decreased or absent awareness (unconsciousness), is one of the therapies used in end-of-life healthcare settings in order to manage refractory symptoms such as pain, dyspnoea and distress. It is intended to relieve the burden of intolerable suffering of patients who are... Read full article

Exploring in More Depth Issues of Truth Telling, Deceit and Lying

Rob George

The ethics article in the last issue ( George, 2011 ; see journal archives) discussed the case of an 80-year-old woman called Martha, with advanced multi-infarct dementia. When Martha suffered infarcts, her cognitive ability temporarily worsened and, for short periods, she forgot that her husband had died. When told that... Read full article

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Faecal Incontinence in Advanced Dementia: The Nursing Role

Nykki Hetherton

Faecal incontinence is one of the prognostic indicators for the terminal stages of dementia. However, there is minimal information on this distressing symptom in the context of cognitive decline. Faecal incontinence in dementia is often under-reported, under-estimated and poorly assessed and managed, despite being a potentially treatable condition. It has... Read full article

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Going for Gold: the Gold Standards Framework programme and accreditation in primary care

Collette Clifford, Keri Thomas, Julie Armstrong-Wilson

Primary care teams are pivotal in caring for patients in the final year of life, enabling more to live well and die where they choose. They face increasing pressures from an ageing population, rising mortality and limited resources. Therefore, proactive approaches are required to support people nearing the end of... Read full article

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Heart-Failure Patients’ Thoughts and Fears Concerning Dying

Kimberley Reeman, Helen Noble

Patients with heart failure experience a variety of reactions to living with a chronic yet terminal disease. These range from acceptance of death to fear of death. Heart-failure patients have a high symptom burden, which adversely affects their quality of life. Patients are very concerned about the burden that their... Read full article

Holistic Assessment of a Woman Admitted to a Hospice With Anxiety

Rebecca Newman

Many people with a terminal diagnosis experience anxiety and require emotional support. Anxiety is characterised by various symptoms, including apprehension, worry, difficulty in concentrating, irritability, panic, fear and restlessness. For some people, the anxiety becomes excessive and persistent and has a significant impact on their quality of life. In advanced... Read full article

Hospices have an important part to play in the lives of people with dementia

Marie Cooper

Dementia is now one of the biggest global public health challenges facing our generation and one which is emerging as a new challenge to those who are involved in end-of-life care provision (European Association for Palliative Care, 2013). Read full article

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Implementing stock end-of-life medication in UK nursing homes

Kathy Morris, Jo Hockley

Background In nursing care homes (NCHs), the use of end-of-life care (EoLC) medication has traditionally been requested and prescribed on an individual basis during each resident’s last days of life. However, some GPs are reluctant to prescribe EoLC medication in anticipation of symptoms occurring if, at the time of their... Read full article

Importance of social care in promoting personalised end-of-life planning

John Powell

I have worked in social care for the past 36 years. I started my professional life working with children, before transferring to the adult world in 2000. In my new role I started to have frequent involvement with people who were dying. I became aware of the variable practice that... Read full article

Incorporating Spirituality in End-of-Life Nursing Care

Sarah Spencer-Adams

The palliative approach to care involves individual, holistic, continuous assessment of physical, psychological, spiritual and social problems. The aim is to identify adverse symptoms and associated distress and then to identify measures to help alleviate those symptoms. Spiritual distress at the end of life has the potential to impinge on... Read full article

Inequalities in end-of-life care still exist

Heather Richardson

"I live in a society where I get good end-of-life care regardless of who I am, where I live or the circumstances of my life" The above statement has been written from the perspective of someone nearing the end of life. It represents one of six positive ambitions for palliative... Read full article

Interventions in the acute hospital setting to help children facing bereavement

Lindsay Hall, Jackie Browne, Roz Bexon, Mary Bleakley, Angela Cheadle

An important aspect of end-of-life care in the acute hospital setting is caring for the whole family, including children and young people. Children and young people may be unseen and unheard by hospital staff. However, they are still affected by the forthcoming death of someone close to them. Early and... Read full article

Is sedation at the end of life compatible with the principles of palliative care?

Antonia Dean, Barbara Beard

Palliative sedation has been a matter of clinical debate for many years, largely due to uncertainty surrounding whether it may hasten death. Recently, it has also come under public and media scrutiny as part of the review of end-of-life practices initiated by concerns about the Liverpool Care Pathway for the... Read full article

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Knowledge and Skills Needed by Informal Carers to Look After Terminally Ill Patients at Home

Josaleen Connolly, Dr Stuart Milligan

Background: The majority of terminally ill people wish to remain, and be cared for, at home by family members with the support of the community care team. However, informal carers tend to feel unprepared for the caring role, are often elderly, have varying levels of support and suffer stress and... Read full article

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Legal Aspects of End-of-Life Care in Severe Anorexia Nervosa

Dr Martin Curtice, Dr Rhiannon Kihara

Anorexia nervosa has the highest mortality rate of any psychiatric illness. Its management can be complicated as people with the condition can resist efforts to enable them to eat and drink. Ethical, medico-legal and psychological issues need careful exploration when considering compulsory treatment. This article summarises the judgment from the... Read full article

Lessons from an incomplete implementation project introducing the AMBER care bundle

Kirsty Randall, Annamarie Challinor, Bie Nio Ong

The AMBER care bundle was formally adopted in 2015 by the National Health Service (NHS) Improving Quality and provides a systematic approach to managing the care of hospital patients who are facing an uncertain recovery and who are at risk of dying in the next 1–2 months. This paper describes... Read full article

Living With People Who Have Dementia and Faecal Incontinence

Nykki Hetherton

As the population ages, the number of people with dementia will increase. Although faecal incontinence (FI) is not always present in this patient group, its occurrence, in combination with urinary incontinence, is a prognostic indicator of advanced disease. A previous article explored the topic of FI in the context of... Read full article

Lymphoedema Management in Palliative and end-of-life care

Catherine Kreckeler

Lymphoedema is a progressive, chronic condition that can have profound adverse effects on the physical and psychosocial wellbeing of sufferers. It tends to be ineffectively managed in palliative care clinical settings and the condition often goes unrecognised and untreated. Multi-layer, compression, decongestive therapy remains one of the cornerstones of lymphoedema... Read full article

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Maintaining Dignity at the end of life in the Emergency Department

Pippa Deith

The main aims of nursing care at the end of life include relieving suffering, improving sense of wellbeing and helping patients to die peacefully and with dignity. Dignity at the end of life is a subjective concept. However, there are certain fundamental principles that are deemed essential to the maintenance... Read full article

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New Arrangements for The National End of Life Care Programme and Recent Publications

Claire Henry

On 1 April 2013, a new improvement body, NHS Improving Quality, was established. It is hosted by the NHS Commissioning Board and brings together the combined knowledge and experience of a number of NHS improvement organisations: National End of Life Care Programme National Cancer Action Team NHS Diabetes and Kidney Care... Read full article

Non-Invasive Ventilation: New Challenges For Hospice Nurses

Ruth Palmer

Specialist palliative care units such as hospices are increasingly providing care for patients with non-malignant conditions. However, that means that palliative care nurses require education and training in the care of people with a variety of conditions, not just cancer. Also, palliative care nurses need to understand that they cannot... Read full article

Nursing assessment of anxiety and mood disturbance in a palliative patient

Sarah Combes

Anxiety can be described as a feeling of worry or apprehension about uncertain future events; it is a normal sensation that everyone experiences at times (Stevenson 2010). Feeling anxious can be beneficial as it stimulates the fight or flight response, and helps us adapt to minor stressors such as sitting... Read full article

Nursing care of patients at the end of life who are unable to drink

Annie Pettifer

The management of the hydration of dying patients and the subsequent distress of their relatives can be challenging for nurses. This article will analyse a fictitious case scenario in which a student nurse considers how best to care for a dying patient's hydration needs. It will consider best practice surrounding... Read full article

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Oral Hygiene In Dying Patients With Diminished Consciousness

Susan Martin

Xerostomia (subjective sensation of oral dryness) and stomatitis (sore mouth) are common in patients with terminal disease and have considerable impact on patients’ wellbeing. Patients with diminished consciousness may still be aware of oral discomfort such as a dry mouth. Therefore, good oral hygiene is an important nursing role when... Read full article

Overview Of New Guidance For Staff Who Are Responsible For Care After Death

Jo Wilson, Claire Henry

The nurse’s role at the end of life extends beyond death. It also involves providing care for the deceased person and giving support to their families, friends and carers. However, there has been a lack of clarity regarding the detail of care after death and the associated care practices have... Read full article

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Palliative Care And Advanced Dementia: The Croydon Project

Victor Pace, Sharon Scott

Advanced dementia is associated with a high symptom burden. However, people with advanced dementia and their carers are less likely to be cared for by specialist palliative care services than people with other conditions such as cancer. The traditional model of specialist palliative care, with its high level of symptom... Read full article

Palliative Care Funding Review: Implications for Family Carers

Rebecca Newman

In the UK, widespread national variation in the funding and provision of end-of-life care services has led to an independent Palliative Care Funding Review being commissioned, the aim of which is to create a transparent funding system, with better outcomes for patients and value for the NHS. The Review’s proposed... Read full article

Patients’ Experiences Of Fatigue In The End Stages Of Renal Disease

Kate Critchley

The number of patients diagnosed with end-stage renal disease (ESRD) is increasing annually and will continue to rise as a result of the ageing population. Research exploring the symptom burden in ESRD has shown it to be equal to that of the symptom burden experienced by patients with terminal cancer.... Read full article

Perception of Dignity in Older People and at The End of Life

Julie Vosit-Steller, Jenna Swinkin, Katie McCabe

The impact of illness, age, treatment and a terminal prognosis can erode a patient’s sense of dignity and reduce quality of life. Maintaining patient dignity has always been considered synonymous with nursing practice. However, there is minimal information relating to how best nurses can promote and maintain a patient’s sense... Read full article

Postmortem/Last Offices Nursing Care Effectiveness as Perceived by US Licensed Funeral Directors

Dr Mikel W Hand

Background: The provision of appropriate physical postmortem nursing care, or last offices, is important for all deceased people, particularly if further preparation is required by the funeral director for the purpose of open-casket viewing. However, the effectiveness of nursing practices in this regard has been the subject of minimal empirical... Read full article

Pre-discharge Home Visits for Terminally Ill Hospital Patients

Tracy Alexander, Chia Swee Hong

The preferred place of care and death for the majority of terminally ill people is the home environment. However, the majority of people die in hospital. Discharging terminally ill people from hospital to home is considered to be a complex, challenging and risky process. Pre-discharge occupational therapy home visits are... Read full article

Preferred place of death: determining factors and the role of advance care planning

Claire Hornigold

One of the many factors associated with a good death is when patients have been able to be cared for, and have died, in their preferred place. Supporting patients to die in their preferred place of care is considered a quality indicator of palliative and end-of-life care. Most people wish... Read full article

Preventing avoidable hospital admissions for people with advanced dementia

Kimberley St John

Dementia is a life-limiting condition that is associated with a high symptom burden, particularly in the advanced stages of the disease. People with dementia wish to be cared for and to die in their usual place of residence. However, in the UK, over 30% of people with dementia will die... Read full article

Problems Associated With Care At The End Of Life In Acute Hospitals

Melissa J Bloomer, Cheryle Moss, Wendy Cross

Many more people die in acute hospitals than ever before. An integrative literature review was undertaken to explore end-of-life care (EoLC) delivered in non-palliative care settings. It showed that providing EoLC in acute hospitals is difficult, given the emphasis on life extension and cure. EoLC pathways can assist with the... Read full article

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Requests for Non-Disclosure of Poor Prognoses to Patients

Kristina Reynolds

For patients who are given information about a life-limiting diagnosis and poor prognosis, it can be very distressing to hear words such as ‘terminal’ and ‘end of life’. These words are also upsetting for patients’ family members/loved ones. In some instances, the family or surrogate decision-makers may ask that health... Read full article

Role Modelling GSF Principles of end-of-life Care to Care Homes

Barbara Kenyon

Residents in care homes providing nursing care are becoming increasingly frail and dependent, with 80% having dementia or severe memory problems. Currently, 19% of the UK population die in care homes each year. Care homes (especially care homes providing nursing care) have an important role in the care of dying... Read full article

Role of Acute Oncology in the Transition to Palliative Care

Claire S Nunn

Patients with cancer may attend hospital emergency departments as a result of complications of their disease process and treatment, e.g. sepsis, hypercalcaemia or nausea and vomiting. In addition, patients with undiagnosed cancer can also present at emergency departments when they become symptomatic. The acute care culture within hospitals means that... Read full article

Route to Success: Achieving Quality for Lesbian, Gay, Bisexual and Transgender People

Bridget Moss, Claire Henry, Tes Smith

In the UK, accurate numbers of people who identify themselves as lesbian, gay, bisexual or transgender (LGBT) are hard to establish. Official figures vary between 750,000 (Office for National Statistics, 2010) and 3.6 million (Parliament UK, 2009). In 2009, the number of people who had sought gender reassignment treatment was... Read full article

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Service evaluation of community-based palliative care and a hospice-at-home service

Janet Wilson, Julie Steers, Kath Steele, James Turner, Allison Tinker

Background Hospices and other palliative and end-of-life care providers are required to develop services that aim to improve the quality of end-of-life care and choices for those living with or dying from a life-threatening illness. In 2010, an NHS clinical commissioning group in South Yorkshire, UK, produced a strategic plan... Read full article

So many reports, so much consensus, yet still so much need for change

Charles Turton

The end-of-life care world cannot complain about a lack of associated reviews and reports—my own database has 48 from the UK since the national End of Life Care Strategy was published 7 years ago (Department of Health 2008). Read full article

St Christopher’s Hospice Clinical Guidelines: Anticipatory end-of-life care medication for the symptoms of terminal restlessness, pain and excessive secretions in frail older people in care homes

Julie Kinley, Louisa Stone, Jo Hockley

The term ‘frail older people’ has been defined as people over 75 years of age with geriatric syndrome, i.e. the presence of numerous chronic diseases and signs and symptoms such as incontinence, falls, cognitive impairment and reduced mobility (Saavreda Muñoz and Barreto Martín, 2008). However, some older people are ‘frail’... Read full article

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The ‘Route To Success’ in End-of-Life Care: Achieving Quality for Social Work

Professor Margaret Holloway, Rick O’Brien

Approximately 30% of people use some form of local authority-funded social care in their last year of life. Evidence suggests that any reduction in the availability of social care services might increase demand on hospital services (National End of Life Care Intelligence Network, 2012). For example, it is known from... Read full article

The Barriers to Organ and Tissue Donation in Palliative Care

Mary Spencer

Discussions about organ/tissue donation are now expected to become part of end-of-life care discussions, when appropriate. It is commonly perceived that terminally ill people are not eligible to donate their organs/ tissues. However, that is not the case. Palliative care patients can donate various tissues, including corneal tissue, and in... Read full article

The Development of An Electronic, Palliative Care, Coordination System

Claire Henry, Anita Hayes

Effective coordination of care, sharing of information and partnership working are principles that define high-quality, end-of-life care. Technology is now being adapted to support these principles in order to improve, and put individual patients at the centre of, care at the end of life. The concept of an electronic, palliative... Read full article

The Emotional Labour of Caring for Patients at the End of Life

Deborah Holman

Nurses’ emotional commitment to their patients contributes to the quality and excellence of nursing care and enhances the nurse–patient relationship. Nurses are expected to manage their emotions in order to present a professional demeanour and maintain professional boundaries, while at the same time provide genuine caring behaviour to their patients.... Read full article

The Importance of Recognising Depression Following a Stroke

Helen Brewerton

Stroke is the third most common cause of death in the UK and the single most common cause of disability. Depression following a stroke occurs in approximately one-third of stroke sufferers. It is a distressing symptom and has been found to have a significant effect on post-stroke morbidity and mortality.... Read full article

The Judgment of the High Court in Two Right-To-Die Cases

Dr Martin JR Curtice, Dr Rhiannon Kihara

This article summarises the judgment from the High Court cases of Tony Nicklinson and ‘Martin’. Both men suffered from locked-in syndrome secondary to catastrophic physical disabilities, but their mental processes were unimpaired. ‘Martin’ wanted the then Director of Public Prosecutions (DPP) to clarify his policy on assisted dying so that... Read full article

Truth Telling, Deceit and Lying in Cases of Advanced Dementia

Rob George

Telling the truth is an integral part of every relationship. If people are not told the truth, it is hard for them to function effectively in society. In health care, if clinicians lie to patients, then patients are unable to make informed decisions. Such practice compromises patients’ autonomy. Therefore, the... Read full article

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Undergraduate nursing students’ construction of a good and bad death

Oluwatomilayo (Tomi) Adesina, Anita De Bellis, Lana Zannettino

Background Nurses have a key role to play in ensuring that high-quality care is given to patients throughout their disease trajectory, including at the end of life. An increase in the ageing population in Western countries means that nurses are responsible for providing end-of-life care in a range of clinical... Read full article

Understanding Factors that Influence the Grieving Process

Lisa Sheehy

Grief is a universal response to loss. Despite its universality, variation exists in how it is experienced and expressed. In light of evidence from bereavement research over the last two decades, previous paradigms regarding grief and loss are changing, which has important implications for professionals, including nurses, who work in... Read full article

Understanding Nurse And Patient Perceptions Of A ‘Good Death’

Miranda Paddy

The generally accepted principles of a good death among Western health and social care professionals include that the patient is: pain and symptom free; treated as an individual and with dignity and respect; involved in decision-making; prepared for and accepts the imminence of death; surrounded by loved ones in familiar... Read full article

Using Information Systems to better Support Quality Care at the end of Life

Katie Lindsey, Elaine Owen, Julia Chisnell

Quality is an important focus for every organisation involved in end-of-life care. Whether commissioning or providing services, organisations need to be able to measure progress in delivering care, demonstrate the progress in a systematic way and share best practice across their locality. Effective sharing of information is essential to the... Read full article

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What is Dementia? Implications for Caring at the end of Life

Julie Watson

Dementia is understood in a number of different ways within different fields of practice, e.g. health and social care. In Western society, predominantly biomedical ideas of dementia influence the experiences of people who have dementia. Limitations of biomedical models of dementia have led to the development of other ways of... Read full article

Workplace Stressors: A Survey of Palliative Care Nurses in Australia

Dr Louise Peters, Dr Susan Lee, Professor Margaret O’Connor

Background: Working with terminally ill patients places palliative care and hospice nurses at risk of chronic stress, mental health problems and burnout. Aim: This study investigated the source and level of workplace stress experienced by palliative care nurses in Australia. Methods: Seventy-one palliative care nurses completed a self-report questionnaire based... Read full article

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Xerostomia in Terminally Ill and Dying Patients: Best Practice

Lisa Sheehy, Jasper Shaw

Xerostomia (dry mouth) has a negative impact on health and quality of life. It can increase the risk of oral candidiasis, tooth cavities and infections and cause difficulties with swallowing and communicating. Maintenance of oral hygiene should be an integral aspect of nursing care. Oral hygiene is important within all... Read full article

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St Christopher's offer a programme of education and training events covering a range of subjects related to palliative and end of life care

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