CPD
Page 60
End of life care multiple choice questionnaire
CONTINUING PROFESSIONAL DEVELOPMENT
Page 61
Read Donato Tallo’s practice profile on depression
Page 62
Guidelines on how to write a practice profile
Improving end of life care for adults NS738 Sherwen E (2014) Improving end of life care for adults. Nursing Standard. 28, 32, 51-57. Date of submission: November 8 2013; date of acceptance: January 28 2014.
Abstract With people being given more choice about where to die, it is important that healthcare professionals strive to assist a good death in all care settings. Death is a personal, spiritual and social event, which is unique to the individual. Nurses are in an ideal position to support the person who is dying and those who are important and close to them. There are many aspects to be considered in assisting a good death, including symptom management, compassionate communication and an understanding of what is important to the individual.
Author Eleanor Sherwen Patient experience manager, NHS England, Essex Area Team, Essex. Correspondence to: [email protected]
Keywords Care planning, communication, death and dying, end of life care, good death, symptom management
Review All articles are subject to external double-blind peer review and checked for plagiarism using automated software.
Online Guidelines on writing for publication are available at www.nursing-standard.co.uk. For related articles visit the archive and search using the keywords above.
Aims and intended learning outcomes This article aims to explore the care of adults in the last few days of life. The focus is on people aged 18 and over, although some of the principles will be transferable to the care of those under 18 years. Rather than being settingspecific, the common and recurrent themes that are applicable to caring for the individual approaching the end of life in all care settings
are outlined. The purpose is to explore good end of life care and encourage reflection on how this translates across different care settings. Throughout this article, the words ‘person’ or ‘individual’ rather than ‘patient’ are used. People are referred to differently in different care settings: they are patients in hospital, residents in care homes, and clients, service users and customers in social care. However, irrespective of where they receive care, they remain people with individual needs and circumstances. The case vignettes in this article are taken from the author’s professional and personal experiences. After reading this article and completing the time out activities you should be able to: Identify what is important to individuals at the end of life and to those who are close to them. Describe what good end of life care might look like. Outline the symptoms that may occur at the end of life and effective management. Explain the role of effective communication and the importance of developing good relationships in end of life care. Discuss the role of informal carers.
Introduction ‘How we care for the dying is an indicator of how we care for all sick and vulnerable people. It is a measure of society as a whole and it is a litmus test for health and social care services’ (Department of Health (DH) 2008a). End of life care is one of the core components of palliative care and is central to the provision of good general care. It is considered that people are approaching the end of life when it is thought that they will die within the next 12 months, and includes those who may die in a few days or hours (General Medical Council 2010).
©Downloaded NURSING from STANDARD / RCN PUBLISHING april :: voluses 28 without no 32 ::permission. 2014 51 RCNi.com by ${individualUser.displayName} on Jul 20, 2016. For personal use only. No9other Copyright © 2016 RCNi Ltd. All rights reserved.
CPD end of life care
1 Reflect on what a good death means to you. How would you want to be cared for, and how would you want those who are important to you to be cared for? What aspects of end of life care would be important to you? Discuss this with a colleague or friend, and note any similarities and/or differences. 2 Reflect on how you ascertain who is important to an individual you are caring for. Can you think of a time when a person was dying and you mistook the identity of his or her next of kin? Is there anything you could do differently in your practice? 3 Think of a person whom you have cared for who was not recognised as dying at the time. What effect did this lack of recognition have on his or her care? Make a list of the aspects of care that could have been improved and write some suggestions for what could have been done differently?
The World Health Organization (WHO) (2014) highlights the role of palliative care in supporting patients, individuals and families ‘from diagnosis to the end of life and bereavement’. It is intended that palliative care epitomises a holistic approach, including care of the mind, body and soul. Ensuring that people receive good care at the end of life has been seen as a high priority during the past decade. In the UK, improving end of life care is recognised as a social and political priority (Ellershaw et al 2010), and one of the catalysts for raising the profile of end of life care was the review High Quality Care for All (DH 2008b). The review was commissioned in response to the variation in the quality of care people were receiving at all stages of care pathways. It identified many immediate requirements for improving quality of care, which in turn precipitated the publication of the End of Life Care Strategy (DH 2008a). The review and subsequent strategy focus on choice, placing individuals at the centre of care planning so that they are able to be cared for and die in the place of their choosing. As many as 63% of the population have said that they would prefer to be cared for and die at home, yet 53% of people die in hospital (Dying Matters 2014). The End of Life Care Strategy (DH 2008a) includes specific goals to improve care for all people nearing the end of life, irrespective of diagnosis and care setting. People die in many settings, including hospitals, care homes, hospices, prisons, and at home. Therefore, it is essential that high quality end of life care is provided in all care settings, and is focused on individual needs and preferences. The strategy outlined a pathway for end of life care, which focuses on six steps to be considered by all care services (DH 2008a): Discussions (open and honest communication) as end of life approaches. Assessment, care planning and review. Co-ordination of care. Delivery of high quality services in different settings. Care in the last days of life. Care after death. Following the publication of the strategy, a gradual change has been identified in the number of people being supported to die in their usual place of residence, including care homes (DH 2012). The strategy is being viewed as successful because the majority of people express a wish to die at home and increasing numbers of people are being supported to die in their usual place of residence (DH 20012). Underpinning and running in parallel with
the six steps in the pathway for end of life care (DH 2008a) includes social care and/or social work, spiritual care services, and support and information for the individual and his or her family and/or carers. While the focus of this article is on the fifth step of the pathway – care in the last days of life – it would be inappropriate to not mention the Liverpool Care Pathway for the Dying Patient (LCP). Following some controversy surrounding the LCP, an independent review led by Baroness Julia Neuberger was commissioned, and the results were published in More Care, Less Pathway: A Review of the Liverpool Care Pathway (DH 2013). The review panel recommended that the use of the LCP be phased out and suggested that it should be replaced by an end of life care plan, but has yet to clarify what is meant by an end of life care plan. Complete time out activity 1
Defining a good death The notions of ‘dying well’ and a ‘good death’ have been explored in the literature (Bradbury 2000, Neuberger 2004, Faber et al 2004, Allen and Watts 2012). To be able to provide and/ or assist good end of life care, it is important to have an understanding of what is considered good in relation to death. The Future of Health and Care of Older People: The Best is Yet to Come (Age Concern England 1999) identifies the principles of a good death (Box 1). Although the publication focuses on older people, the principles are equally appropriate to all ages, and while the language used may appear outdated, they are comprehensive and applicable today. The End of Life Care Strategy (DH 2008a) highlights four themes that are applicable to caring for an individual approaching the end of life that contribute to a good death: Being treated as an individual, with dignity and respect. Being without pain and other symptoms. Being in familiar surroundings. Being in the company of close family and/or friends. Holloway (2007) adds another dimension in relation to a peaceful death, which is ensuring that one’s affairs are in order. Individuals will have different needs and desires, and what is important to one person may be insignificant to another. A good death has been described as being nebulous and fluid (Allen and Watts 2012), and the role of the healthcare professional is crucial in determining what a good death means to the
52 april 9 :: vol 28 noRCNi.com 32 :: 2014by ${individualUser.displayName} on Jul 20, 2016.©For NURSING STANDARD / RCN Downloaded from personal use only. No other usesPUBLISHING without permission. Copyright © 2016 RCNi Ltd. All rights reserved.
individual, and requires regular assessment and review. Exploring and understanding the needs and desires of individuals and working within the wider health and social care sectors is essential to ensure that people are cared for in the way they would like, and in the setting they would prefer. Complete time out activity 2
Caring for the individual and those important to him or her Caring for an individual at the end of life can be one of the most challenging and rewarding experiences for nurses. It is an opportunity to ensure that individuals die peacefully, and that their families and those important to them are left with memories that support the grieving process. Caring for an individual at the end of life also means caring for family members and those important to the individual. The term ‘next of kin’ is used frequently throughout health and social care, and it should be noted that ‘this is neither defined, nor does it have any formal legal status’ (British Medical Association (BMA) 2008). A person can nominate any individual to be his or her next of kin; there are no rules about who this should be and it is not something that the family can dispute (BMA 2008). It is important that this is understood by those caring for individuals who are dying, because families are diverse and complex, and conflicts can arise when different people want different care for the individual. People who are dying must remain at the centre of all care discussions and identify whom they wish to act for them in the event they are unable to act for themselves. Of equal importance is establishing whom they would wish to be notified if their condition deteriorates further and/or they die. Therefore, the role of health and social care professionals is to ask the person about who is important in his or her life and who is his or her family. The notion and essence of the family has become more diverse because the concept of family is changing. People who are approaching the end of life will want to be reassured that those important to them are included and cared for, whatever their family composition (Box 2). For example, it can be a concern for lesbian, gay, bisexual and trans people that their partners may not be allowed to visit or have information shared with them because they are not seen as next of kin (Royal College of Nursing (RCN) and UNISON 2004). Complete time out activity 3
Recognising when death is imminent Recognising when death is approaching is not straightforward. It can be challenging for all, particularly for people with long-term conditions and frail older people with multiple co-morbidities (Hayes et al 2014). However, there are specific physiological and psychological changes that suggest that death is imminent, including: Hydration and nutrition requirements lessen. Respiratory tract secretions may increase, and the person may develop a death ‘rattle’. Hearing this sound can be distressing for family members and, therefore, it is important to explain that this does not cause the person distress.
BOX 1 Principles of a good death 1. To know when death is coming and to understand what can be expected. 2. To be able to retain control of what happens. 3. To be afforded dignity and privacy. 4. To have control over pain relief and other symptom control. 5. To have choice and control over where death occurs (at home or elsewhere). 6. To have access to information and expertise of whatever kind is necessary. 7. To have access to any spiritual or emotional support required. 8. To have access to hospice care in any location, not only in hospital. 9. To have control over who is present and who shares the end. 10. To be able to issue advance directives, which ensure wishes are respected. 11. To have time to say goodbye, and control over other aspects of timing. 12. To be able to leave when it is time to go, and not to have life prolonged pointlessly. Note: in relation to principle 10, this terminology on advance directives is no longer used, and in line with the Mental Capacity Act 2005 is termed advance decision to refuse treatment and lasting power of attorney. It should also be noted that the legislative and legal context in this article is applicable to England and will differ in other parts of the UK. (Age Concern England 1999)
BOX 2 Case vignette 1 Evelyn (a pseudonym) was admitted as an emergency case to an acute medical ward, where it was evident that she was approaching the end of life. Ward staff arranged for her to be accommodated in a single room. In her room at any one time, and sometimes together, were both her sons, one with his ex-partner, and one with his ex-wife and her partner (who was female), and her two grandchildren (one of whom was a step-grandchild). The people in the room were there because Evelyn cared about and loved each one – they were her family. Evelyn and her family were able to recognise that everyone should be with her and comfort her and say goodbye. It is acknowledged that not all families or people have such relationships, therefore nurses caring for the individual should ensure that they assist any discussion and visits that could be potentially problematic. This can only be achieved if the time has been taken to understand the person and who is important to him or her, and any areas that may be difficult for the individual and those around him or her to manage.
©Downloaded NURSING from STANDARD / RCN PUBLISHING april 9 :: vol 28 no 32 :: 2014 53 RCNi.com by ${individualUser.displayName} on Jul 20, 2016. For personal use only. No other uses without permission. Copyright © 2016 RCNi Ltd. All rights reserved.
CPD end of life care The person may become restless and/or agitated and may call out. Peripheral areas of the body may change in colour and temperature, for example hands and feet may become cold. The person may withdraw and become less interested in what is happening around him or her. The person may drift in and out of consciousness. Recognising that death is imminent is important because it can help others ensure that unnecessary invasive and futile treatments and investigations are not undertaken, and the focus can be on assisting and enabling a good death (Box 3).
being at home may become more important, and for others the location will become less important. Therefore, it is essential to revisit the person’s wishes as part of the ongoing care planning process. Complete time out activity 4
Symptom management Effective, timely symptom management is an essential aspect of caring for a person at the end of life. Individuals may experience a range of symptoms, including those that are physical,
BOX 3 Case vignette 2
Making preferences a reality
4 Reflect on symptom management at the end of life and on an individual who had complex symptoms requiring referral to a specialist team. What did you learn from the advice and suggestions of the specialist team? Can you think of a time when you implemented what it was that you learned from this experience?
Given that the focus is on care in the last days of life, it is anticipated that the first step of the end of life care pathway – discussions as end of life approaches – will have taken place. This step focuses on open and honest communication, and encompasses advance care planning (ACP). ACP is one of the essential components of end of life care, and it is a voluntary process which enables people to discuss or, if they wish, document their wishes for the care that they would like to receive in the future (National End of Life Care Programme 2011). There is no optimum time for these conversations to take place, and they can be difficult for both the person and the healthcare professional involved. Irrespective of how difficult they may be, it is important to remember that they are essential for enabling and supporting individuals to have their wishes and preferences met wherever possible. ‘Quality care at the end of life is highly individual and should be achieved through a process of shared decision making and clear communication that acknowledges the values and preferences of patients and their families’ (Steinhauser et al 2000). When an individual is approaching the end of life, it is important to establish: Whether discussions as end of life approaches have taken place and whether there is written documentation that healthcare professionals need to be aware of. The wishes and preferences expressed by the individual and whether these are still applicable. If the person has not had the opportunity to have these discussions, what would he or she like to happen now? People can and do change their preferences as they approach death (Box 4). For some,
Marjorie (a pseudonym) was 86 years old when she was admitted to the local community hospital. She had several admissions to hospital, and was found to have a palpable mass in her abdomen. The medical team suggested that she undergo further invasive investigations. The nurse spoke with Marjorie and established that she did not want any further investigations or treatment. With Marjorie’s permission, a conversation was had with her family to convey her wishes and preferences. The medical team was supportive of the decision because it was clear that her deterioration was not due to a simple reversible cause. Marjorie was kept comfortable and pain free and died three days later with her family at her bedside. Crucial to Marjorie’s care was effective communication, enabling her wishes to be heard and respected.
BOX 4 Case vignette 3 George (a pseudonym) had completed an advance care plan in which he had stated he wished to die at home. His care was provided by his wife, community nursing team and social care workers. As George’s condition deteriorated rapidly one weekend, his wife and family became less sure they could manage at home because his symptoms were becoming more complex and difficult to manage. A discussion took place with George, his wife and the community team, and George agreed that he would prefer to be admitted to the local palliative care centre. George died three days later with his wife and family beside him. George and his family had been reassured by his admission to the palliative care centre. The family were able to focus their energies on George and to be with him as he was dying, as opposed to experiencing the stress of worrying whether or not they could cope at home.
54 april 9 :: vol 28 noRCNi.com 32 :: 2014by ${individualUser.displayName} on Jul 20, 2016.©For NURSING STANDARD / RCN Downloaded from personal use only. No other usesPUBLISHING without permission. Copyright © 2016 RCNi Ltd. All rights reserved.
psychological and spiritual, and every individual will experience these at different levels of intensity. Ellershaw et al (2010) identified four specific physical symptoms associated with care at the end of life: pain, nausea, sickness and respiratory tract secretions. Hunwick et al (2010) identified two additional physical symptoms: fatigue and constipation. Most symptoms can be alleviated in general care, and it is important to be aware of when and how to refer the person to specialist services. Referral to these services is vital when physical and/or psychological symptoms ‘exceed the knowledge of the generalists involved’ (Hayes et al 2014). This may occur when a person has unmanageable pain, for example neuropathic pain, or when the individual is distressed and requires additional psychological support. Sykes (2013) stated: ‘It is a completely inadequate response to the onset of a distressing symptom if management has to wait for a doctor’s order or the pharmacist’s acquisition of the medication required.’ This waiting time can be lengthy in all care settings and can cause unnecessary distress to the person who is dying, his or her family and nursing staff. It is important to be prepared and to ensure mechanisms are in place to address symptom management in a timely manner – and it is good practice to ensure that anticipatory medication has been prescribed and is available to alleviate common symptoms (Sykes 2013). The prescribing of medication should take into account the most appropriate and accessible administration route, including oral, injectable and suppository. It is also important that care givers can assist appropriately with changes in medication if the person is at home. In the event that a syringe driver is required, clear communication to relatives regarding what this means and how this will be managed is vital. Nurses working with individuals need to find a way to plan for any change in symptoms and reassure the person and his or her family that pain can be managed. While physical symptoms are one element of symptom management, any psychological distress must also be attended to (Kelly et al 2006). As with physical symptoms, there are many factors that contribute to psychological distress. Researchers have demonstrated how improved spiritual wellbeing has been associated with decreased psychological distress (Hills et al 2005). Campbell et al (2013) stated that spiritual care ‘…may be easier done than described, as it is often delivered within good health care
without being defined’. It has been suggested that good spiritual care requires being able to see the person behind the illness, and for healthcare professionals to have a good understanding of their own spirituality (Delinger 2011). Nurses can promote spiritual wellbeing by asking the individual some simple questions, for example what makes him or her smile, or what in his or her life provides hope and meaning? Healthcare professionals may feel the need to respond and that they should have all of the answers, but spiritual care requires the creation of a relationship and a genuine desire to get to know the person. Complete time out activity 5
Communication Communication has been defined as being ‘...central to successful caring relationships and to effective team working… essential for “no decision about me without me”…’ (NHS Commissioning Board and DH 2012). It is how nurses communicate that can and does leave a lasting impression. It is evident that an individual who is dying will have special needs, which can be fulfilled if healthcare professionals take the time to sit and listen and find out what they are. ‘The most important communication, perhaps, is the fact that we let him know that we are ready and willing to share some of his concerns’ (Kübler-Ross 1969). The notion of healthcare professionals being there, of being active in listening and care delivery, and of developing a relationship with those within their care is essential. Neuberger (2004) stated that to deliver ‘…top quality care, with empathy’, there must be a level of emotional attachment with those being cared for. Johns (2006) identified that ‘…the word professional is often used as a barrier to retreat behind to keep distance from or detachment from the patient’. Johns (2006) argued that detachment and retreat are inadequate when nurses and other healthcare professionals are working with people who are experiencing pain and distress, and that this behaviour can exacerbate rather than ease pain and distress. Communication is at the heart of the relationship between health professionals and the individual who is dying and those important to him or her. Complete time out activity 6
Informal carers While the experience of dying is regarded as ‘one of the most critical stages of life,
5 Reflect on your usual communication style. Are you able to adapt your approach to different people and situations? Do you consider how you phrase things to people and check that they understand? What could you do differently in terms of improving your communication with others? 6 Reflect on whether you have asked family members and carers if they would like to be involved in the care of the person after death. Being involved in care after death is not something that everyone would want, but for some, it is a final act of gentleness and is deeply personal. Nurses can assist and support this care. How often do you ask family members and/or informal carers if they would like to help? If this is not something that you have previously asked, what would enable you to do so?
©Downloaded NURSING from STANDARD / RCN PUBLISHING april :: voluses 28 no 32 ::permission. 2014 55 RCNi.com by ${individualUser.displayName} on Jul 20, 2016. For personal use only. No9other without Copyright © 2016 RCNi Ltd. All rights reserved.
CPD end of life care
7 Think about the evidence available and the suggestion that a lack of care causes burnout among nurses who work in end of life care. What support is available for you in the workplace? How do you support your colleagues? Is there anything that could be implemented in the workplace to assist you in this? If yes, who can you raise this issue with?
the quality of the experience of dying very largely depends on others’ (Seymour and Ingleton 2004). As end of life approaches, individuals become increasingly dependent on both professional and informal carers. This is the case – not only for the person who is nearing the end of life, but also his or her informal carers or those who are important to him or her. Research by Gallagher and Krawczyk (2013) highlighted that 30% of bereaved family members did not feel that they received the support they needed in dealing with difficult feelings as their loved one approached the end of life. For those who did feel supported, it was nurses and social workers who provided the majority of that support. When a person is being cared for at home, success often depends on the input of family caregivers (Hudson 2004). For many informal carers, this will be a new experience and it can be emotionally and physically exhausting and frightening. Thomas (2003) stated that ‘carer breakdown is the key factor in prompting institutionalised care for dying patients’. For some families who are providing care at home, there comes a time when they feel they can no longer do so (Sykes 2013). Carers need to be supported and reassured when the place of care delivery changes. Informal carers may not have any concept of what to expect and may be fearful of ‘getting it wrong’. It is, therefore,
important to advise them of physiological changes that may occur as death approaches and to provide reassurance that this is part of the dying process.
Care after death Good end of life care does not stop at the point of death (DH 2008a). It is important that the person’s body is treated with the same dignity and respect after death as before death. Depending on culture and place of death, in many circumstances it will be the nurse who undertakes the initial care of the body. The National End of Life Care Programme and National Nurse Consultant Group (Palliative Care) (2011) highlighted that care after death includes: Honouring the spiritual or cultural wishes of the deceased person, family and/or carers while ensuring legal obligations are met. Preparing the body for transfer to the mortuary or funeral director’s premises. Offering family and carers the opportunity to participate in the process and supporting them to do so. Ensuring that the privacy and dignity of the deceased person is maintained. Ensuring that the health and safety of those who come into contact with the body is protected.
References Age Concern England (1999) The Future of Health and Care of Older People: The Best is Yet to Come. Age Concern England, London.
Campbell W, Chandler BJ, Smith S (2013) Holistic care: psychosocial and spiritual access. In Oliver D (Ed) End of Life Care in Neurological Disease. Springer-Verlag, London, 91-111.
Department of Health (2013) More Care, Less Pathway: A Review of the Liverpool Care Pathway. The Stationery Office, London.
Allen M, Watts T (2012) Promoting health and wellbeing at the end of life: the contribution of care pathways. International Journal of Palliative Nursing. 18, 7, 348-354.
Delinger I (2011) Spirituality. In Baldwin MA, Woodhouse J (Eds) Key Concepts in Palliative Care. Sage, London, 218-222.
Dying Matters (2014) Why Talk About It? www.dyingmatters. org/overview/why-talk-about-it (Last accessed: March 13 2014.)
Benner P, Wrubel J (1989) The Primacy of Caring. Stress and Coping in Health and Illness. Prentice Hall, New Jersey NJ. Bradbury M (2000) The good death? In Dickinson D, Johnson M, Samson Katz J (Eds) Death, Dying and Bereavement. Second edition. Sage publications, London, 59-63. British Medical Association (2008) Mental Capacity Act Tool Kit. BMA, London.
Department of Health (2008a) End of Life Care Strategy. Promoting High Quality Care for All Adults at the End of Life. The Stationery Office, London. Department of Health (2008b) High Quality Care for All. NHS Next Stage Review. The Stationery Office, London. Department of Health (2012) End of Life Care Strategy. Fourth Annual Report. The Stationery Office, London.
Ellershaw J, Dewar S, Murphy D (2010) Achieving a good death for all. British Medical Journal. 341, 656-658. Faber S, Egnew T, Faber A (2004) What is a respectful death? In Berzoff J, Silverman PR (Eds) Living with Dying. Columbia University Press, New York, NY, 102-127. Fallowfield LJ, Jenkins VA, Beveridge HA (2002) Truth
may hurt but deceit hurts more: communication in palliative care. Palliative Medicine. 16, 4, 297-303. Gallagher R, Krawczyk M (2013) Family members’ perceptions of end-of-life care across diverse locations of care. BMC Palliative Care. 12, 1, 25. General Medical Council (2010) Treatment and Care Towards the End of Life: Good Practice in Decision Making. www.gmc-uk.org/static/ documents/content/End_of_ life.pdf (Last accessed: March 13 2014.) Hayes A, Henry C, Holloway M, Lindsey K, Sherwen E, Smith T (2014) Pathways through Care at the End of Life. Jessica Kingsley Publishers, London.
56 april 9 :: vol 28 noRCNi.com 32 :: 2014by ${individualUser.displayName} on Jul 20, 2016.©For NURSING STANDARD / RCN Downloaded from personal use only. No other usesPUBLISHING without permission. Copyright © 2016 RCNi Ltd. All rights reserved.
Honouring peoples’ wishes for organ and tissue donation. Returning the deceased person’s personal possessions to family members. Complete time out activity 7
with colleagues and reflecting on practice. Whether the chosen mode is formal or informal, time for this should be protected.
Conclusion
Support for nurses Being able to deliver good end of life care can present ‘considerable clinical, nursing, communication and emotional challenges for health professionals’ (Fallowfield et al 2002). Caring for people who are dying and those who are important to them can be rewarding as well as challenging, but there should be support mechanisms in place to enable healthcare professionals to continue their work with those who are at the end of life. There is some evidence to suggest that it is not the caring that causes burnout among nurses, but rather the loss of caring (Benner and Wrubel 1989). Loss of caring can lead to nurses feeling more detached from those they are caring for, and therefore less able to deliver the level of compassionate, person-centred end of life care that makes a difference. Nurses need time to reflect on their own vulnerability, and the depth of emotions that they may be feeling. Support can be obtained through formal clinical supervision, mentorship and peer supervision and informally by spending time
The main considerations when caring for someone at the end of life discussed in this article should be viewed as a tool to assist healthcare professionals to reflect on the care they deliver, which areas of care could be improved and areas that require further development. It is essential that nurses and healthcare professionals remember that death is a deeply personal and social experience and one where individuals must be afforded dignity and respect. The role of nursing is pivotal in shaping the experience and delivery of end of life care, and communication is an essential aspect of this. As people approach the end of life, they are confronted by complex and unique challenges that may threaten their physical, emotional, and spiritual integrity (Steinhauser et al 2000). Nurses are in an ideal position to support and assist people who are dying with these challenges. They need to be prepared to provide high quality person-centred end of life care, irrespective of the care setting in which the person dies NS Complete time out activity 8
Hills J, Paice JA, Cameron JR, Shott S (2005) Spirituality and distress in palliative care consultation. Journal of Palliative Medicine. 8, 4, 782-788.
Kelly B, McClement S, Chochinov H (2006) Measurement of psychological distress in palliative care. Palliative Medicine. 20, 8, 779-789.
Holloway M (2007) Negotiating Death in Contemporary Health and Social Care. Policy Press, Bristol.
Kübler-Ross E (1969) On Death and Dying. Routledge, London.
Hudson P (2004) Positive aspects and challenges associated with caring for a dying relative at home. International Journal of Palliative Nursing. 10, 2, 58-65. Hunwick L, Juwle S, Mitchell G (2010) Symptom control at the end of life. In Jevon P (Ed) Care of the Dying and Deceased Patient. A Practical Guide for Nurses. WileyBlackwell, Chichester, 37-68. Johns C (2006) Engaging Reflection in Practice. A Narrative Approach. Blackwell Publishing, Oxford.
National End of Life Care Programme (2011) Capacity, Care Planning and Advance Care Planning in Life Limiting Illness. A Guide for Health and Social Care Staff. www.ncpc.org.uk/sites/ default/files/ACP_Booklet_ June_2011.pdf (Last accessed: March 20 2014.) National End of Life Care Programme, National Nurse Consultant Group (Palliative Care) (2011) Guidance for Staff Responsible for Care After Death (Last Offices). The Stationery Office, London.
Neuberger J (2004) Dying Well: A Guide to Enabling A Good Death. Second edition. Radcliffe Publishing, Oxford. NHS Commissioning Board, Department of Health (2012) Compassion in Practice. Nursing, Midwifery and Care Staff. Our Vision and Strategy. The Stationery Office, London. Royal College of Nursing, UNISON (2004) Not ‘Just’ a Friend. Best Practice Guidance on Health Care for Lesbian, Gay and Bisexual Service Users and their Families. www.rcn.org.uk/__data/assets/ pdf_file/0014/20741/notjustafriend. pdf (Last accessed: March 13 2014.) Seymour J, Ingleton C (2004) Overview. In Payne S, Seymour J, Ingleton C (Eds) Palliative Care Nursing. Principles and Evidence
8 Now that you have completed the article, you might like to write a practice profile. Guidelines to help you are on page 62.
for Practice. Open University Press, Maidenhead, 189-217. Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA (2000) Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA. 284, 19, 2476-2482. Sykes N (2013) Care at the end of life. In Oliver D (Ed) End of Life Care in Neurological Disease. Springer-Verlag, London, 143-160. Thomas K (2003) Caring for the Dying at Home: Companions on the Journey. Radcliffe Publishing, Milton Keynes. World Health Organization (2014) Cancer. Palliative Care is an Essential Part of Cancer Control. www.who.int/cancer/palliative/ en (Last accessed: March 13 2014.)
©Downloaded NURSING from STANDARD / RCN PUBLISHING april :: voluses 28 without no 32 ::permission. 2014 57 RCNi.com by ${individualUser.displayName} on Jul 20, 2016. For personal use only. No9other Copyright © 2016 RCNi Ltd. All rights reserved.
Page 60
End of life care multiple choice questionnaire
CONTINUING PROFESSIONAL DEVELOPMENT
Page 61
Read Donato Tallo’s practice profile on depression
Page 62
Guidelines on how to write a practice profile
Improving end of life care for adults NS738 Sherwen E (2014) Improving end of life care for adults. Nursing Standard. 28, 32, 51-57. Date of submission: November 8 2013; date of acceptance: January 28 2014.
Abstract With people being given more choice about where to die, it is important that healthcare professionals strive to assist a good death in all care settings. Death is a personal, spiritual and social event, which is unique to the individual. Nurses are in an ideal position to support the person who is dying and those who are important and close to them. There are many aspects to be considered in assisting a good death, including symptom management, compassionate communication and an understanding of what is important to the individual.
Author Eleanor Sherwen Patient experience manager, NHS England, Essex Area Team, Essex. Correspondence to: [email protected]
Keywords Care planning, communication, death and dying, end of life care, good death, symptom management
Review All articles are subject to external double-blind peer review and checked for plagiarism using automated software.
Online Guidelines on writing for publication are available at www.nursing-standard.co.uk. For related articles visit the archive and search using the keywords above.
Aims and intended learning outcomes This article aims to explore the care of adults in the last few days of life. The focus is on people aged 18 and over, although some of the principles will be transferable to the care of those under 18 years. Rather than being settingspecific, the common and recurrent themes that are applicable to caring for the individual approaching the end of life in all care settings
are outlined. The purpose is to explore good end of life care and encourage reflection on how this translates across different care settings. Throughout this article, the words ‘person’ or ‘individual’ rather than ‘patient’ are used. People are referred to differently in different care settings: they are patients in hospital, residents in care homes, and clients, service users and customers in social care. However, irrespective of where they receive care, they remain people with individual needs and circumstances. The case vignettes in this article are taken from the author’s professional and personal experiences. After reading this article and completing the time out activities you should be able to: Identify what is important to individuals at the end of life and to those who are close to them. Describe what good end of life care might look like. Outline the symptoms that may occur at the end of life and effective management. Explain the role of effective communication and the importance of developing good relationships in end of life care. Discuss the role of informal carers.
Introduction ‘How we care for the dying is an indicator of how we care for all sick and vulnerable people. It is a measure of society as a whole and it is a litmus test for health and social care services’ (Department of Health (DH) 2008a). End of life care is one of the core components of palliative care and is central to the provision of good general care. It is considered that people are approaching the end of life when it is thought that they will die within the next 12 months, and includes those who may die in a few days or hours (General Medical Council 2010).
©Downloaded NURSING from STANDARD / RCN PUBLISHING april :: voluses 28 without no 32 ::permission. 2014 51 RCNi.com by ${individualUser.displayName} on Jul 20, 2016. For personal use only. No9other Copyright © 2016 RCNi Ltd. All rights reserved.
CPD end of life care
1 Reflect on what a good death means to you. How would you want to be cared for, and how would you want those who are important to you to be cared for? What aspects of end of life care would be important to you? Discuss this with a colleague or friend, and note any similarities and/or differences. 2 Reflect on how you ascertain who is important to an individual you are caring for. Can you think of a time when a person was dying and you mistook the identity of his or her next of kin? Is there anything you could do differently in your practice? 3 Think of a person whom you have cared for who was not recognised as dying at the time. What effect did this lack of recognition have on his or her care? Make a list of the aspects of care that could have been improved and write some suggestions for what could have been done differently?
The World Health Organization (WHO) (2014) highlights the role of palliative care in supporting patients, individuals and families ‘from diagnosis to the end of life and bereavement’. It is intended that palliative care epitomises a holistic approach, including care of the mind, body and soul. Ensuring that people receive good care at the end of life has been seen as a high priority during the past decade. In the UK, improving end of life care is recognised as a social and political priority (Ellershaw et al 2010), and one of the catalysts for raising the profile of end of life care was the review High Quality Care for All (DH 2008b). The review was commissioned in response to the variation in the quality of care people were receiving at all stages of care pathways. It identified many immediate requirements for improving quality of care, which in turn precipitated the publication of the End of Life Care Strategy (DH 2008a). The review and subsequent strategy focus on choice, placing individuals at the centre of care planning so that they are able to be cared for and die in the place of their choosing. As many as 63% of the population have said that they would prefer to be cared for and die at home, yet 53% of people die in hospital (Dying Matters 2014). The End of Life Care Strategy (DH 2008a) includes specific goals to improve care for all people nearing the end of life, irrespective of diagnosis and care setting. People die in many settings, including hospitals, care homes, hospices, prisons, and at home. Therefore, it is essential that high quality end of life care is provided in all care settings, and is focused on individual needs and preferences. The strategy outlined a pathway for end of life care, which focuses on six steps to be considered by all care services (DH 2008a): Discussions (open and honest communication) as end of life approaches. Assessment, care planning and review. Co-ordination of care. Delivery of high quality services in different settings. Care in the last days of life. Care after death. Following the publication of the strategy, a gradual change has been identified in the number of people being supported to die in their usual place of residence, including care homes (DH 2012). The strategy is being viewed as successful because the majority of people express a wish to die at home and increasing numbers of people are being supported to die in their usual place of residence (DH 20012). Underpinning and running in parallel with
the six steps in the pathway for end of life care (DH 2008a) includes social care and/or social work, spiritual care services, and support and information for the individual and his or her family and/or carers. While the focus of this article is on the fifth step of the pathway – care in the last days of life – it would be inappropriate to not mention the Liverpool Care Pathway for the Dying Patient (LCP). Following some controversy surrounding the LCP, an independent review led by Baroness Julia Neuberger was commissioned, and the results were published in More Care, Less Pathway: A Review of the Liverpool Care Pathway (DH 2013). The review panel recommended that the use of the LCP be phased out and suggested that it should be replaced by an end of life care plan, but has yet to clarify what is meant by an end of life care plan. Complete time out activity 1
Defining a good death The notions of ‘dying well’ and a ‘good death’ have been explored in the literature (Bradbury 2000, Neuberger 2004, Faber et al 2004, Allen and Watts 2012). To be able to provide and/ or assist good end of life care, it is important to have an understanding of what is considered good in relation to death. The Future of Health and Care of Older People: The Best is Yet to Come (Age Concern England 1999) identifies the principles of a good death (Box 1). Although the publication focuses on older people, the principles are equally appropriate to all ages, and while the language used may appear outdated, they are comprehensive and applicable today. The End of Life Care Strategy (DH 2008a) highlights four themes that are applicable to caring for an individual approaching the end of life that contribute to a good death: Being treated as an individual, with dignity and respect. Being without pain and other symptoms. Being in familiar surroundings. Being in the company of close family and/or friends. Holloway (2007) adds another dimension in relation to a peaceful death, which is ensuring that one’s affairs are in order. Individuals will have different needs and desires, and what is important to one person may be insignificant to another. A good death has been described as being nebulous and fluid (Allen and Watts 2012), and the role of the healthcare professional is crucial in determining what a good death means to the
52 april 9 :: vol 28 noRCNi.com 32 :: 2014by ${individualUser.displayName} on Jul 20, 2016.©For NURSING STANDARD / RCN Downloaded from personal use only. No other usesPUBLISHING without permission. Copyright © 2016 RCNi Ltd. All rights reserved.
individual, and requires regular assessment and review. Exploring and understanding the needs and desires of individuals and working within the wider health and social care sectors is essential to ensure that people are cared for in the way they would like, and in the setting they would prefer. Complete time out activity 2
Caring for the individual and those important to him or her Caring for an individual at the end of life can be one of the most challenging and rewarding experiences for nurses. It is an opportunity to ensure that individuals die peacefully, and that their families and those important to them are left with memories that support the grieving process. Caring for an individual at the end of life also means caring for family members and those important to the individual. The term ‘next of kin’ is used frequently throughout health and social care, and it should be noted that ‘this is neither defined, nor does it have any formal legal status’ (British Medical Association (BMA) 2008). A person can nominate any individual to be his or her next of kin; there are no rules about who this should be and it is not something that the family can dispute (BMA 2008). It is important that this is understood by those caring for individuals who are dying, because families are diverse and complex, and conflicts can arise when different people want different care for the individual. People who are dying must remain at the centre of all care discussions and identify whom they wish to act for them in the event they are unable to act for themselves. Of equal importance is establishing whom they would wish to be notified if their condition deteriorates further and/or they die. Therefore, the role of health and social care professionals is to ask the person about who is important in his or her life and who is his or her family. The notion and essence of the family has become more diverse because the concept of family is changing. People who are approaching the end of life will want to be reassured that those important to them are included and cared for, whatever their family composition (Box 2). For example, it can be a concern for lesbian, gay, bisexual and trans people that their partners may not be allowed to visit or have information shared with them because they are not seen as next of kin (Royal College of Nursing (RCN) and UNISON 2004). Complete time out activity 3
Recognising when death is imminent Recognising when death is approaching is not straightforward. It can be challenging for all, particularly for people with long-term conditions and frail older people with multiple co-morbidities (Hayes et al 2014). However, there are specific physiological and psychological changes that suggest that death is imminent, including: Hydration and nutrition requirements lessen. Respiratory tract secretions may increase, and the person may develop a death ‘rattle’. Hearing this sound can be distressing for family members and, therefore, it is important to explain that this does not cause the person distress.
BOX 1 Principles of a good death 1. To know when death is coming and to understand what can be expected. 2. To be able to retain control of what happens. 3. To be afforded dignity and privacy. 4. To have control over pain relief and other symptom control. 5. To have choice and control over where death occurs (at home or elsewhere). 6. To have access to information and expertise of whatever kind is necessary. 7. To have access to any spiritual or emotional support required. 8. To have access to hospice care in any location, not only in hospital. 9. To have control over who is present and who shares the end. 10. To be able to issue advance directives, which ensure wishes are respected. 11. To have time to say goodbye, and control over other aspects of timing. 12. To be able to leave when it is time to go, and not to have life prolonged pointlessly. Note: in relation to principle 10, this terminology on advance directives is no longer used, and in line with the Mental Capacity Act 2005 is termed advance decision to refuse treatment and lasting power of attorney. It should also be noted that the legislative and legal context in this article is applicable to England and will differ in other parts of the UK. (Age Concern England 1999)
BOX 2 Case vignette 1 Evelyn (a pseudonym) was admitted as an emergency case to an acute medical ward, where it was evident that she was approaching the end of life. Ward staff arranged for her to be accommodated in a single room. In her room at any one time, and sometimes together, were both her sons, one with his ex-partner, and one with his ex-wife and her partner (who was female), and her two grandchildren (one of whom was a step-grandchild). The people in the room were there because Evelyn cared about and loved each one – they were her family. Evelyn and her family were able to recognise that everyone should be with her and comfort her and say goodbye. It is acknowledged that not all families or people have such relationships, therefore nurses caring for the individual should ensure that they assist any discussion and visits that could be potentially problematic. This can only be achieved if the time has been taken to understand the person and who is important to him or her, and any areas that may be difficult for the individual and those around him or her to manage.
©Downloaded NURSING from STANDARD / RCN PUBLISHING april 9 :: vol 28 no 32 :: 2014 53 RCNi.com by ${individualUser.displayName} on Jul 20, 2016. For personal use only. No other uses without permission. Copyright © 2016 RCNi Ltd. All rights reserved.
CPD end of life care The person may become restless and/or agitated and may call out. Peripheral areas of the body may change in colour and temperature, for example hands and feet may become cold. The person may withdraw and become less interested in what is happening around him or her. The person may drift in and out of consciousness. Recognising that death is imminent is important because it can help others ensure that unnecessary invasive and futile treatments and investigations are not undertaken, and the focus can be on assisting and enabling a good death (Box 3).
being at home may become more important, and for others the location will become less important. Therefore, it is essential to revisit the person’s wishes as part of the ongoing care planning process. Complete time out activity 4
Symptom management Effective, timely symptom management is an essential aspect of caring for a person at the end of life. Individuals may experience a range of symptoms, including those that are physical,
BOX 3 Case vignette 2
Making preferences a reality
4 Reflect on symptom management at the end of life and on an individual who had complex symptoms requiring referral to a specialist team. What did you learn from the advice and suggestions of the specialist team? Can you think of a time when you implemented what it was that you learned from this experience?
Given that the focus is on care in the last days of life, it is anticipated that the first step of the end of life care pathway – discussions as end of life approaches – will have taken place. This step focuses on open and honest communication, and encompasses advance care planning (ACP). ACP is one of the essential components of end of life care, and it is a voluntary process which enables people to discuss or, if they wish, document their wishes for the care that they would like to receive in the future (National End of Life Care Programme 2011). There is no optimum time for these conversations to take place, and they can be difficult for both the person and the healthcare professional involved. Irrespective of how difficult they may be, it is important to remember that they are essential for enabling and supporting individuals to have their wishes and preferences met wherever possible. ‘Quality care at the end of life is highly individual and should be achieved through a process of shared decision making and clear communication that acknowledges the values and preferences of patients and their families’ (Steinhauser et al 2000). When an individual is approaching the end of life, it is important to establish: Whether discussions as end of life approaches have taken place and whether there is written documentation that healthcare professionals need to be aware of. The wishes and preferences expressed by the individual and whether these are still applicable. If the person has not had the opportunity to have these discussions, what would he or she like to happen now? People can and do change their preferences as they approach death (Box 4). For some,
Marjorie (a pseudonym) was 86 years old when she was admitted to the local community hospital. She had several admissions to hospital, and was found to have a palpable mass in her abdomen. The medical team suggested that she undergo further invasive investigations. The nurse spoke with Marjorie and established that she did not want any further investigations or treatment. With Marjorie’s permission, a conversation was had with her family to convey her wishes and preferences. The medical team was supportive of the decision because it was clear that her deterioration was not due to a simple reversible cause. Marjorie was kept comfortable and pain free and died three days later with her family at her bedside. Crucial to Marjorie’s care was effective communication, enabling her wishes to be heard and respected.
BOX 4 Case vignette 3 George (a pseudonym) had completed an advance care plan in which he had stated he wished to die at home. His care was provided by his wife, community nursing team and social care workers. As George’s condition deteriorated rapidly one weekend, his wife and family became less sure they could manage at home because his symptoms were becoming more complex and difficult to manage. A discussion took place with George, his wife and the community team, and George agreed that he would prefer to be admitted to the local palliative care centre. George died three days later with his wife and family beside him. George and his family had been reassured by his admission to the palliative care centre. The family were able to focus their energies on George and to be with him as he was dying, as opposed to experiencing the stress of worrying whether or not they could cope at home.
54 april 9 :: vol 28 noRCNi.com 32 :: 2014by ${individualUser.displayName} on Jul 20, 2016.©For NURSING STANDARD / RCN Downloaded from personal use only. No other usesPUBLISHING without permission. Copyright © 2016 RCNi Ltd. All rights reserved.
psychological and spiritual, and every individual will experience these at different levels of intensity. Ellershaw et al (2010) identified four specific physical symptoms associated with care at the end of life: pain, nausea, sickness and respiratory tract secretions. Hunwick et al (2010) identified two additional physical symptoms: fatigue and constipation. Most symptoms can be alleviated in general care, and it is important to be aware of when and how to refer the person to specialist services. Referral to these services is vital when physical and/or psychological symptoms ‘exceed the knowledge of the generalists involved’ (Hayes et al 2014). This may occur when a person has unmanageable pain, for example neuropathic pain, or when the individual is distressed and requires additional psychological support. Sykes (2013) stated: ‘It is a completely inadequate response to the onset of a distressing symptom if management has to wait for a doctor’s order or the pharmacist’s acquisition of the medication required.’ This waiting time can be lengthy in all care settings and can cause unnecessary distress to the person who is dying, his or her family and nursing staff. It is important to be prepared and to ensure mechanisms are in place to address symptom management in a timely manner – and it is good practice to ensure that anticipatory medication has been prescribed and is available to alleviate common symptoms (Sykes 2013). The prescribing of medication should take into account the most appropriate and accessible administration route, including oral, injectable and suppository. It is also important that care givers can assist appropriately with changes in medication if the person is at home. In the event that a syringe driver is required, clear communication to relatives regarding what this means and how this will be managed is vital. Nurses working with individuals need to find a way to plan for any change in symptoms and reassure the person and his or her family that pain can be managed. While physical symptoms are one element of symptom management, any psychological distress must also be attended to (Kelly et al 2006). As with physical symptoms, there are many factors that contribute to psychological distress. Researchers have demonstrated how improved spiritual wellbeing has been associated with decreased psychological distress (Hills et al 2005). Campbell et al (2013) stated that spiritual care ‘…may be easier done than described, as it is often delivered within good health care
without being defined’. It has been suggested that good spiritual care requires being able to see the person behind the illness, and for healthcare professionals to have a good understanding of their own spirituality (Delinger 2011). Nurses can promote spiritual wellbeing by asking the individual some simple questions, for example what makes him or her smile, or what in his or her life provides hope and meaning? Healthcare professionals may feel the need to respond and that they should have all of the answers, but spiritual care requires the creation of a relationship and a genuine desire to get to know the person. Complete time out activity 5
Communication Communication has been defined as being ‘...central to successful caring relationships and to effective team working… essential for “no decision about me without me”…’ (NHS Commissioning Board and DH 2012). It is how nurses communicate that can and does leave a lasting impression. It is evident that an individual who is dying will have special needs, which can be fulfilled if healthcare professionals take the time to sit and listen and find out what they are. ‘The most important communication, perhaps, is the fact that we let him know that we are ready and willing to share some of his concerns’ (Kübler-Ross 1969). The notion of healthcare professionals being there, of being active in listening and care delivery, and of developing a relationship with those within their care is essential. Neuberger (2004) stated that to deliver ‘…top quality care, with empathy’, there must be a level of emotional attachment with those being cared for. Johns (2006) identified that ‘…the word professional is often used as a barrier to retreat behind to keep distance from or detachment from the patient’. Johns (2006) argued that detachment and retreat are inadequate when nurses and other healthcare professionals are working with people who are experiencing pain and distress, and that this behaviour can exacerbate rather than ease pain and distress. Communication is at the heart of the relationship between health professionals and the individual who is dying and those important to him or her. Complete time out activity 6
Informal carers While the experience of dying is regarded as ‘one of the most critical stages of life,
5 Reflect on your usual communication style. Are you able to adapt your approach to different people and situations? Do you consider how you phrase things to people and check that they understand? What could you do differently in terms of improving your communication with others? 6 Reflect on whether you have asked family members and carers if they would like to be involved in the care of the person after death. Being involved in care after death is not something that everyone would want, but for some, it is a final act of gentleness and is deeply personal. Nurses can assist and support this care. How often do you ask family members and/or informal carers if they would like to help? If this is not something that you have previously asked, what would enable you to do so?
©Downloaded NURSING from STANDARD / RCN PUBLISHING april :: voluses 28 no 32 ::permission. 2014 55 RCNi.com by ${individualUser.displayName} on Jul 20, 2016. For personal use only. No9other without Copyright © 2016 RCNi Ltd. All rights reserved.
CPD end of life care
7 Think about the evidence available and the suggestion that a lack of care causes burnout among nurses who work in end of life care. What support is available for you in the workplace? How do you support your colleagues? Is there anything that could be implemented in the workplace to assist you in this? If yes, who can you raise this issue with?
the quality of the experience of dying very largely depends on others’ (Seymour and Ingleton 2004). As end of life approaches, individuals become increasingly dependent on both professional and informal carers. This is the case – not only for the person who is nearing the end of life, but also his or her informal carers or those who are important to him or her. Research by Gallagher and Krawczyk (2013) highlighted that 30% of bereaved family members did not feel that they received the support they needed in dealing with difficult feelings as their loved one approached the end of life. For those who did feel supported, it was nurses and social workers who provided the majority of that support. When a person is being cared for at home, success often depends on the input of family caregivers (Hudson 2004). For many informal carers, this will be a new experience and it can be emotionally and physically exhausting and frightening. Thomas (2003) stated that ‘carer breakdown is the key factor in prompting institutionalised care for dying patients’. For some families who are providing care at home, there comes a time when they feel they can no longer do so (Sykes 2013). Carers need to be supported and reassured when the place of care delivery changes. Informal carers may not have any concept of what to expect and may be fearful of ‘getting it wrong’. It is, therefore,
important to advise them of physiological changes that may occur as death approaches and to provide reassurance that this is part of the dying process.
Care after death Good end of life care does not stop at the point of death (DH 2008a). It is important that the person’s body is treated with the same dignity and respect after death as before death. Depending on culture and place of death, in many circumstances it will be the nurse who undertakes the initial care of the body. The National End of Life Care Programme and National Nurse Consultant Group (Palliative Care) (2011) highlighted that care after death includes: Honouring the spiritual or cultural wishes of the deceased person, family and/or carers while ensuring legal obligations are met. Preparing the body for transfer to the mortuary or funeral director’s premises. Offering family and carers the opportunity to participate in the process and supporting them to do so. Ensuring that the privacy and dignity of the deceased person is maintained. Ensuring that the health and safety of those who come into contact with the body is protected.
References Age Concern England (1999) The Future of Health and Care of Older People: The Best is Yet to Come. Age Concern England, London.
Campbell W, Chandler BJ, Smith S (2013) Holistic care: psychosocial and spiritual access. In Oliver D (Ed) End of Life Care in Neurological Disease. Springer-Verlag, London, 91-111.
Department of Health (2013) More Care, Less Pathway: A Review of the Liverpool Care Pathway. The Stationery Office, London.
Allen M, Watts T (2012) Promoting health and wellbeing at the end of life: the contribution of care pathways. International Journal of Palliative Nursing. 18, 7, 348-354.
Delinger I (2011) Spirituality. In Baldwin MA, Woodhouse J (Eds) Key Concepts in Palliative Care. Sage, London, 218-222.
Dying Matters (2014) Why Talk About It? www.dyingmatters. org/overview/why-talk-about-it (Last accessed: March 13 2014.)
Benner P, Wrubel J (1989) The Primacy of Caring. Stress and Coping in Health and Illness. Prentice Hall, New Jersey NJ. Bradbury M (2000) The good death? In Dickinson D, Johnson M, Samson Katz J (Eds) Death, Dying and Bereavement. Second edition. Sage publications, London, 59-63. British Medical Association (2008) Mental Capacity Act Tool Kit. BMA, London.
Department of Health (2008a) End of Life Care Strategy. Promoting High Quality Care for All Adults at the End of Life. The Stationery Office, London. Department of Health (2008b) High Quality Care for All. NHS Next Stage Review. The Stationery Office, London. Department of Health (2012) End of Life Care Strategy. Fourth Annual Report. The Stationery Office, London.
Ellershaw J, Dewar S, Murphy D (2010) Achieving a good death for all. British Medical Journal. 341, 656-658. Faber S, Egnew T, Faber A (2004) What is a respectful death? In Berzoff J, Silverman PR (Eds) Living with Dying. Columbia University Press, New York, NY, 102-127. Fallowfield LJ, Jenkins VA, Beveridge HA (2002) Truth
may hurt but deceit hurts more: communication in palliative care. Palliative Medicine. 16, 4, 297-303. Gallagher R, Krawczyk M (2013) Family members’ perceptions of end-of-life care across diverse locations of care. BMC Palliative Care. 12, 1, 25. General Medical Council (2010) Treatment and Care Towards the End of Life: Good Practice in Decision Making. www.gmc-uk.org/static/ documents/content/End_of_ life.pdf (Last accessed: March 13 2014.) Hayes A, Henry C, Holloway M, Lindsey K, Sherwen E, Smith T (2014) Pathways through Care at the End of Life. Jessica Kingsley Publishers, London.
56 april 9 :: vol 28 noRCNi.com 32 :: 2014by ${individualUser.displayName} on Jul 20, 2016.©For NURSING STANDARD / RCN Downloaded from personal use only. No other usesPUBLISHING without permission. Copyright © 2016 RCNi Ltd. All rights reserved.
Honouring peoples’ wishes for organ and tissue donation. Returning the deceased person’s personal possessions to family members. Complete time out activity 7
with colleagues and reflecting on practice. Whether the chosen mode is formal or informal, time for this should be protected.
Conclusion
Support for nurses Being able to deliver good end of life care can present ‘considerable clinical, nursing, communication and emotional challenges for health professionals’ (Fallowfield et al 2002). Caring for people who are dying and those who are important to them can be rewarding as well as challenging, but there should be support mechanisms in place to enable healthcare professionals to continue their work with those who are at the end of life. There is some evidence to suggest that it is not the caring that causes burnout among nurses, but rather the loss of caring (Benner and Wrubel 1989). Loss of caring can lead to nurses feeling more detached from those they are caring for, and therefore less able to deliver the level of compassionate, person-centred end of life care that makes a difference. Nurses need time to reflect on their own vulnerability, and the depth of emotions that they may be feeling. Support can be obtained through formal clinical supervision, mentorship and peer supervision and informally by spending time
The main considerations when caring for someone at the end of life discussed in this article should be viewed as a tool to assist healthcare professionals to reflect on the care they deliver, which areas of care could be improved and areas that require further development. It is essential that nurses and healthcare professionals remember that death is a deeply personal and social experience and one where individuals must be afforded dignity and respect. The role of nursing is pivotal in shaping the experience and delivery of end of life care, and communication is an essential aspect of this. As people approach the end of life, they are confronted by complex and unique challenges that may threaten their physical, emotional, and spiritual integrity (Steinhauser et al 2000). Nurses are in an ideal position to support and assist people who are dying with these challenges. They need to be prepared to provide high quality person-centred end of life care, irrespective of the care setting in which the person dies NS Complete time out activity 8
Hills J, Paice JA, Cameron JR, Shott S (2005) Spirituality and distress in palliative care consultation. Journal of Palliative Medicine. 8, 4, 782-788.
Kelly B, McClement S, Chochinov H (2006) Measurement of psychological distress in palliative care. Palliative Medicine. 20, 8, 779-789.
Holloway M (2007) Negotiating Death in Contemporary Health and Social Care. Policy Press, Bristol.
Kübler-Ross E (1969) On Death and Dying. Routledge, London.
Hudson P (2004) Positive aspects and challenges associated with caring for a dying relative at home. International Journal of Palliative Nursing. 10, 2, 58-65. Hunwick L, Juwle S, Mitchell G (2010) Symptom control at the end of life. In Jevon P (Ed) Care of the Dying and Deceased Patient. A Practical Guide for Nurses. WileyBlackwell, Chichester, 37-68. Johns C (2006) Engaging Reflection in Practice. A Narrative Approach. Blackwell Publishing, Oxford.
National End of Life Care Programme (2011) Capacity, Care Planning and Advance Care Planning in Life Limiting Illness. A Guide for Health and Social Care Staff. www.ncpc.org.uk/sites/ default/files/ACP_Booklet_ June_2011.pdf (Last accessed: March 20 2014.) National End of Life Care Programme, National Nurse Consultant Group (Palliative Care) (2011) Guidance for Staff Responsible for Care After Death (Last Offices). The Stationery Office, London.
Neuberger J (2004) Dying Well: A Guide to Enabling A Good Death. Second edition. Radcliffe Publishing, Oxford. NHS Commissioning Board, Department of Health (2012) Compassion in Practice. Nursing, Midwifery and Care Staff. Our Vision and Strategy. The Stationery Office, London. Royal College of Nursing, UNISON (2004) Not ‘Just’ a Friend. Best Practice Guidance on Health Care for Lesbian, Gay and Bisexual Service Users and their Families. www.rcn.org.uk/__data/assets/ pdf_file/0014/20741/notjustafriend. pdf (Last accessed: March 13 2014.) Seymour J, Ingleton C (2004) Overview. In Payne S, Seymour J, Ingleton C (Eds) Palliative Care Nursing. Principles and Evidence
8 Now that you have completed the article, you might like to write a practice profile. Guidelines to help you are on page 62.
for Practice. Open University Press, Maidenhead, 189-217. Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA (2000) Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA. 284, 19, 2476-2482. Sykes N (2013) Care at the end of life. In Oliver D (Ed) End of Life Care in Neurological Disease. Springer-Verlag, London, 143-160. Thomas K (2003) Caring for the Dying at Home: Companions on the Journey. Radcliffe Publishing, Milton Keynes. World Health Organization (2014) Cancer. Palliative Care is an Essential Part of Cancer Control. www.who.int/cancer/palliative/ en (Last accessed: March 13 2014.)
©Downloaded NURSING from STANDARD / RCN PUBLISHING april :: voluses 28 without no 32 ::permission. 2014 57 RCNi.com by ${individualUser.displayName} on Jul 20, 2016. For personal use only. No9other Copyright © 2016 RCNi Ltd. All rights reserved.
