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 settings. Nursing students are often exposed to providing end-of-life care while on clinical placement. Aim The aim of this study was to explore the definition and construction of both a good and bad death from the perspective of a cohort of Australian third-year undergraduate nursing students. Methods As part of a larger mixed-method survey study of third-year undergraduate nursing students’ perspectives about end-of-life care, qualitative open-ended questions about what constituted a good and a bad death were asked within the survey. These were supplemented by questions on their positive and negative experiences of death and dying. The responses to the open-ended questions were analysed using a thematic analysis. Findings A total of 225 nursing students completed the survey. Participants were asked about death and dying in the dichotomous terms of negative and positive experiences and what constituted a good or bad death. The analysed themes included: pain free or suffering; acceptance or non-acceptance of death; agreements or conflict; family support or no family support; respecting wishes or ignoring wishes; quality of life in the dying process or futile treatment; prepared for death or unprepared for death; good or bad circumstances; influence of good and bad experiences. Conclusions Nursing students had clear understandings of what they considered to be a good and a bad death. They viewed the achievement of a good death as a reflection on their clinical practice. As such, achieving a good death experience for people and their families was viewed as paramount to providing quality nursing care. This knowledge will aid in the education of nursing students in regard to providing the best possible circumstances for a good death for clients.
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 and end-of-life care included in a framework for local action designed to drive better care in England (National Palliative and End of life Care Partnership, 2015). The expectation that anyone who is dying will get fair access to care is not an extraordinary one, nor indeed is it new. Yet, even in 2016, we are faced by a number of key reports that confirm that fair access to care is not the case in reality. The Care Quality Commission has recently undertaken a review looking closely at how dying people …
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. This article describes the launch of the ‘Dementia in palliative and end-of-life care Special Interest Group’, which was a joint venture between Dementia UK and Hospice UK. The group brought together practitioners and clinical leads keen, in the spirit of shared learning, to share knowledge and to provide high-quality palliative and end-of-life care for people and their families affected by dementia. A nominal group technique identified 13 themes, of which five were ranked as priorities in terms of addressing learning needs that could be met during future meetings. These were: communication in dementia; educating others; understanding and influencing policy; care in different settings; and pain assessment and management. Shared learning through the special interest group is a way of harnessing the expertise across the two care domains, with the common objective of improving the lives and deaths of people with dementia.
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 for an examination or attending an interview (Clancy and McVicar 2009). However, if anxiety becomes persistent and severe, it can develop into a mood disturbance and significantly impact quality of life (Wilson et al 2007, Watson et al 2010).Anxiety is prevalent in chronic disease as people are attempting to adjust to the additional stressors and challenges their health conditions bring (Yohannes et al 2010). Anxiety has also been shown to be prevalent in palliative patients, particularly those nearing the end of life (Wilson et al 2007). A recent meta-analysis (Mitchell et al 2011), including 24 studies throughout seven countries, established a prevalence of 9.8% (6.8–13.2%) anxiety as a single mood disturbance in palliative settings, and 29.0% (10.1–52.9%) for all types of mood disorders, including anxiety, depression and adjustment disorder. Palliative patients are also trying to adjust to additional stressors, such as functional decline, as well as trying to come to terms with concerns including the dying process, unresolved physical pain, and worry about those they are leaving behind (Spencer et al 2010).However, while anxiety is known to be common in palliative patients, it is underdiagnosed and undertreated (Wilson et al 2007). Therefore, to manage the symptoms of anxiety appropriately, it is imperative that nurses are able to assess its symptoms and work as part of the multidisciplinary team (MDT). Using a case study approach, this paper critically evaluates the author's experience of assessing and managing the anxiety of a patient in her care. By reflecting …
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 the way they were intertwined. Ms X's life was in imminent danger. The Court implemented methodically the principles of the Mental Capacity Act 2005. Ms X was assessed as lacking capacity to make decisions in relation to treatment for her anorexia. However, she retained capacity to make decisions regarding treatment for her liver disease and the continued harmful use of alcohol. The Court ruled that it was not in Ms X's best interests to be subject to further compulsory treatment for her anorexia, even though this may have prolonged her life. It was also in her best interests and lawful not to provide nutrition and hydration with which she did not comply.
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 in the process of dying. Nurses are centrally involved in the utilisation of palliative sedation in end-of-life care; however, there is minimal research available in relation to their experiences in this regard. The dearth of research prompted this study. Aim To explore the experiences of palliative care nurses in the utilisation of palliative sedation in end-of-life care. Methodology A descriptive phenomenological methodology was adopted involving unstructured interviews. A purposive sample was used of 10 palliative care nurses with at least 1 year's experience of working in a hospice setting in Ireland. The data were analysed using Colaizzi's seven-stage phenomenological method. Findings Data analysis led to the identification of four core themes: (1) information sharing, (2) timing of palliative sedation, (3) level of sedation and (4) palliative sedation as a last resort. The results indicate that the participants were generally satisfied with the processes that underpinned decisions to introduce palliative sedation. They saw it as a highly complex intervention, in part because it involved individuals with very complex conditions and symptoms. Conclusions Palliative care patients, families and the general public in Ireland need to have greater understanding of the role of palliative sedation in the treatment of refractory symptoms at the end of life.
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. The roots of bereavement theory, found in the health-related literature, lie mainly within psychiatry and psychology, which may explain some of the reluctance of general nurses to engage with this literature and area of health care. The application of bereavement support in practice is important and detailed discussion of a practical application will be discussed in another paper; however, initial understanding of bereavement theory enables staff to begin to support patients and carers in an informed manner. No theory is absolute, and it is unlikely that any bereaved person follows the pattern of an individual theory as written, instead presenting a unique individual adaptation of parts of theories to reflect their personality and history. Notably due to the limitations of this article some theorists are not included. Therefore, disenfranchised grief, although acknowledged as important to the bigger picture is omitted. Theoretical frameworks on death, dying and bereavement have been produced more frequently in the past 25 years than for many years previously. Although the classic theories of the last century continue to be quoted, some theorists such as Buckman (1993a,b), Copp (1996) and Stroebe and Schut (1999, 2005) challenge this early work, and question early assumptions. Bereavement theories reflected over many years consider the multifaceted nature of death and dying and the impact on the patient and families, as well as the gradual shift to holistic care in contemporary cultures (Copp 1998). Bereavement although not a new concept was only acknowledged and recognised by theorists and philosophers …
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 dementia, particularly as the condition progresses, can be very stressful, both physically and psychologically. If the carer receives insufficient support, then the person with dementia is often admitted to a care home. When carers are no longer able to maintain care at home, they can experience negative emotions, such as guilt, sadness, shame and loss. This article will discuss reasons why family/friends of people with dementia want to care for their loved one at home, their perceptions of care homes, the need to open up discussions about place of care early in the disease trajectory and some of the advantages of care homes. In so doing, it will draw on issues raised by carers who participated in Alzheimer's Society's Carer Information and Support Programme. It is hoped that the article will provide both health and social care workers with insight into the difficulties experienced by the family/friends of people with dementia.
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 existed within the social care profession in relation to supporting people's end-of-life experience. I also became aware of the accepted view that end-of-life care was solely the responsibility of the medical and nursing professions and that social care had very little to offer. That is clearly not the case. In fact, social care has a great deal to offer people, particularly in relation to facilitating their preferred place of care and death. Social care practitioners are experts in the field of personalised care. The concept of ‘personalisation’ means recognising people as individuals who have strengths and preferences and putting them at the centre of their own care and support. It is based in the core values of social work—respect for the individual and self-determination (Social Care Institute for Excellence 2010). Putting People First (HM Government 2007) aimed to transform the way in which adult social care is delivered to people within the community. It is time that as social care practitioners we build on that success in relation to end-of-life planning and enabling people to have choice and control over their lives and place of death. My journey in promoting end-of-life care within adult social services started 7 years ago when I was the main family carer for my dad George. George had clear views about how and where he wished to die when the time came. Unfortunately, he very nearly did not achieve his desire. Despite wanting to die in his flat, George was admitted to hospital when he became poorly …
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). Within these, the concordance of analysis, agreement on the main issues and the lack of subsequent progress are striking. The recurrent lamenting on things going wrong is all the more frustrating against the background of the excellent example set by hospice care, recognised internationally as world class. Additions to the list of reports so far this year include: the House of Commons Health Committee's (2015) report, End of Life Care: Fifth Report of Session 2014–15 , in March; the Parliamentary and Health Service Ombudsman's (PHSO 2015) report, Dying Without Dignity , in May; the National Institute for Health and Care Excellence's (NICE 2015) consultation draft of the clinical guideline, Care of the Dying Adult , in July; and the National Palliative and End of Life Care Partnership's (2015), Ambitions for Palliative and End of Life Care: A National Framework for Local Action 2015–2020 , in September. In making its report, the House of Commons Health Committee received written advice from 77 organisations and oral evidence from 13 experts. The report's depth of grasp of detail and breadth of understanding of the relevant issues is most encouraging as it comes from a body with the power to call government ministers to account. There are 25 clear recommendations that, in no particular order, include:
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 proactive interventions to support children and young people facing bereavement can help them to adapt to loss. Although education can support nurses in addressing the needs of children and young people facing bereavement, a cultural shift is required so that hospital nurses recognise their responsibility to help adults prepare children for the forthcoming death. Enabling children and young people to express their needs, be part of the dying process if they so wish and create resources to help their future memories of the person who is dying or has died can foster resilience in the face of loss. This article outlines a joint project that was run by adult and children's services in an acute hospital trust and a charitable organisation, which led to the development of written information to help adults prepare and support children at this challenging and uncertain time. It discusses the barriers and concerns expressed by hospital nurses in relation to offering family-centred end-of-life care in an adult acute care environment.
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 in the acute hospital setting. The most frequent causes of hospitalisation among people in the end stages of dementia are pneumonia and urinary tract infections, even though being in hospital is not necessary for optimal treatment. When a person with dementia is approaching the end of life, best practice dictates that a palliative approach to care should be adopted and that, where possible, acute episodic illness should be managed in the community. However, variable levels of community support and limited understanding of the dementia disease trajectory lead to people with end-stage dementia being hospitalised and receiving active treatment rather than palliative and comfort measures. This article will provide an overview of dementia, its associated signs and symptoms and the prognostic signs that indicate a person with dementia is approaching the end of life. It will then discuss the palliative care needs of people with dementia, the reasons why active treatment in an acute hospital setting may be inappropriate and the importance of advance care planning while the person with dementia still has mental capacity.
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 to die within their usual place of residence. However, the majority of people die in an acute hospital environment. There are various factors that influence where people die, including the person9s diagnosis, functional status, social situation, level of support of family caregivers, and the availability of good end-of-life care services. The implementation of advance care planning discussions has also been associated with an increased likelihood of terminally ill patients dying in their preferred place. The process of advance care planning enables patients to communicate to health and social care staff their views and desires in relation to end-of-life care so that care can be planned accordingly. This article will discuss some of the factors that determine whether people will die in the home setting, and then provide an overview of advance care planning and how it can influence place of death and improve the quality of life of dying patients.
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 2005 to come before the Supreme Court and hence it is of legal importance. The case involved a 68-year-old man who had multiple physical co-morbidities and who was diagnosed as being in a minimally conscious state. This article discusses the Supreme Court case and the approach taken by the Court of Protection and the Court of Appeal in applying the Mental Capacity Act 2005 when assessing whether withholding life-sustaining treatment is ever in a person9s best interests. It also outlines two similar cases from 2014. In so doing it demonstrates how the courts assess best interests in end-of-life care for people in minimally conscious states and how this differs legally from those in a persistent vegetative state.
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 hydration at the end of life, drawing on relevant research and professional guidance with the aim of equipping nurses with knowledge to manage hydration needs at the end of life confidently. It will explore specifically the aim of end-of-life care in relation to hydration, the care of dying patients' hydration needs, the risks and benefits of clinically assisted hydration at the end of life and communicating with relatives about hydration at the end of life.
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 Adult Social Services, 2014). Care homes are full and accident and emergency departments and hospitals are burgeoning with frail older people. Over the last few years, many reports have been published outlining what is wrong with health and social care, and important recommendations have been made in relation to how to mend broken services. These reports include: All these reports are informative and well put together. We now need to see their recommendations put into action without creating further bureaucratic burdens for hard-working staff. With regard to end-of-life care in particular, a straightforward set of recommendations has just been published highlighting five key themes (NHS England, 2015):
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 impairment, resistance to care, agitation and psychological symptoms such as depression and apathy. It has been recognised that the environment is a crucial factor that can have an impact upon people with dementia in terms of improving their quality of life. This can also be true of the dining environment. It has been suggested that a dining environment that is welcoming, relaxing and comfortable has the potential to increase food intake and social interaction, which can make the eating/feeding experience more enjoyable and thereby minimise eating/feeding difficulties in people with dementia living in care homes. This article will consider the possible causes of eating/feeding difficulties in people with dementia living in care homes and the environmental factors that may enhance the dining experience. Conflicts of interest: none
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. However, if not adequately educated and supported, caring for patients at the end of life can provoke feelings of anxiety, fear and helplessness in nurses. It is only in relatively recent years that the nursing profession has begun to look more closely at the emotional cost to nurses of managing, hiding and suppressing their emotions — what has been termed ‘emotional labour’. This article will discuss the emotional labour of nursing and explore the significance and therapeutic value of emotional labour in the lives of patients at the end of life. It will then discuss the implications of emotional labour for the nursing profession in relation to the need to ensure nurses receive more support and education regarding managing their emotions whilst caring for others. Conflicts of interest: none
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 caring for terminally ill and dying patients. However, in terminally ill and dying patients who are semi-conscious or unconscious, oral care is often based on historical anecdote rather than robust research evidence and nurses often lack knowledge about the most effective care practices. This article will make recommendations for clinical practice to support nurses or healthcare assistants when carrying out oral care on patients who are at the end of life and are semi-conscious or unconscious. It will consider the evidence for the effectiveness, appropriateness and patient acceptability of oral-cleansing substances, toothbrushes and foam swabs, petroleum jelly and water-based gels for dry lips, topical saliva stimulants and saliva substitutes, as well as topical treatments for stomatitis. Conflicts of interest: none
