39037QLD DIPLOMA OF NURSING (PRE-ENROLMENT)
COMPETENCY OUTLINE
NRS013 RESEARCH THE ENROLLED NURSE ROLE IN SPECIALITY NURSING PRACTICE
Palliative Care Nursing
In this research assignment: The Enrolled Nurse role in specialty nursing practice, I will be discussing palliative care from a nursing perspective with evidence based approach to improve the care of people at the end of their lives, and to provide care and assistance to their families, friends and carers. It will incorporate a definition of palliative care, the history of palliative care and how palliative care evolved into a specialty field, and consider home, hospital, hospice and residential aged care environments. It will contain the knowledge, skill and attitudes the nurse needs to work in this field, and any special training the enrolled nurse needs to undertake to work in this field to assist patient care during the final phase of their life. Also included will be the health care team and the relationship the enrolled nurse has with the team, pain management, symptom management, nutrition and hydration, and therapeutic communication with the patient his/her family members and friends and the health care colleagues.
According to Woodruff (2004, p. 7), The World Health Organisation’s (WHO) definition of palliative care is: “Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-limiting illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual”. Palliative care provides relief from pain and other distressing symptoms; affirms life and regards dying as a normal process; intends neither to hasten or postpone death; integrates the psychological and spiritual aspects of patient care; offers a support system to help patients live as actively as possible until death; offers a support system to help the family cope during the patient’s illness and in their own bereavement; uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated; will enhance quality of life, and may also positively influence the course of illness; Palliative care is also applicable early in the course of the illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.
Kinghorn and Gamlin (2002) state that originally hospices were not concerned with dying. The word ‘hospice’ comes from the Latin word “hospes” meaning a host. Hospices became places of pilgrimage based on Christian principles. From the medieval hospices were travelers found rest; came the modern catholic hospice. In 1879 Our Lady’s Hospice in Dublin was founded, followed in 1900 by St Joseph’s Hospice in East London. In 1948 the Marie Curie Memorial Foundation began caring for patients with advanced cancer. They began their work by opening terminal care homes throughout the United Kingdom (Kinghorn and Gamlin, 2002, pp. 3-6). Macmillan Cancer relief was formed after Douglas Macmillan watched his father die of cancer. He was shocked and surprised to find how little doctors appeared to know about caring for patients with cancer. He discovered that the public knew even less about cancer. In the early 1920’s the charity expanded its work to help families cope with cancer. In 1959, while Cicely Saunders was a research fellow at St. Mary’s Hospital she wrote a series of articles about dying. These were later published by Nursing Times (Saunders 1960) and received favorable reviews by the Lancet and the Manchester Guardian (Clark 1997). In 1967 St. Christopher’s Hospice was founded in Sydenham, London in recognition of the fact that the needs of the dying were not being met, and the principles of palliative care were established. These principles were that palliative care should be holistic, multidisciplinary, scientifically based, meeting the needs of the patient and family, emphasizing high professional standards, research based, evaluative and providing education and training (Kinghorn and Gamlin, 2002, p. 7). Kinghorn and Gamlin (2002) also state that the last decade has brought palliative care through rapid change and growth. In 1985 there were less than 100 hospices in the UK and now there are over 200 with over 400 home care teams compared with less than 50 in 1985. In the early 1980’s palliative nursing became a specialty. The English National Board for Nursing, Midwifery and Health Visiting approved the development of palliative nursing courses, notably the ENB (931 and 285). At first these courses attracted nurses working in hospices, specialist palliative care services and oncology units. Today an impressive and bewildering array of palliative care education is available from short courses to conferences through to diploma, first and higher degrees. In 1991 the National Council for Hospice and Specialist Palliative care Services and the Scottish Partnership Agency for Palliative and Cancer Care were formed, bringing together under one umbrella organization representatives from all the many professional organizations formed in the previous few years (Gamlin and Kinghorn, 2002, pp.8-11).
The National Council for Hospice and Specialist Palliative Care Services (1997) presented the following principals which underpin the palliative care provision: ‘It is the right of every person with a life-threatening illness to receive palliative care wherever they are. It is the responsibility of every health care professional to practice the palliative care approach, and to call in specialist palliative care colleagues if the need arises, as an integral component of good clinical practice, whatever the illness or its stage’. The NCHSPCS (1999) defined the palliative care approach: aims to promote both physical and psychosocial well-being. It is a vital and integral part of all clinical practice, whatever the illness or its stage, informed by a knowledge and practice of palliative care principles and supported by specialist palliative care which should be practiced by all health care professionals in primary care, hospital and other settings comprise; focus on quality of life which includes good symptom control, whole person approach taking into account the person’s life experience and current situation; care which encompasses both the patient and those who matter to that person; respect for patient autonomy and choice (for example: over place of care, treatment options, access to specialist palliative care); and emphasis on open and sensitive communication which extends to patients, informal carers and professional colleagues (Gamlin and Kinghorn, 2002, pp.6-8).
The aetiology of special need for palliative care is identified as soon as a patient is diagnosed with a malignant disease such as cancer, AID’s, HIV and life-threatening or terminal illnesses (O’Connor and Aranda, 2003, p. 3).
The best outcomes for palliative care can be realised through planning. Good planning focuses on client needs, including physical, emotional/psychological, social, family, spiritual/religious, future care, communication with others, equipment and/or additional human resources and education about Palliative Care. Good planning strengthens the linkages between acute and specialist palliative care services, inpatient and community based services, general medical practitioners, community nurses, allied health professionals and disability services (Department of Ageing, Disability and Home Care,2005).
A Palliative Care Plan documents the agreed strategies to meet the client’s needs related to their terminal illness or progressive advanced disease. A palliative care plan is developed with parties involved in the client’s life, while consulting closely with medical professionals, determining how care is to be provided as death approaches. A client’s cultural needs are documented in the Palliative Care Plan through the planning areas. These include physical, emotional/ psychological, social, family, spiritual/religious, future care, and communication with others about the illness, and equipment and/or additional human resources. The planning areas that form part of the palliative care are factors that influence individual and family and cultural needs. Effective communication with clients their family, ‘person responsible’ and/ or advocates will address this need. The palliative care plan may propose treatments, pain management, how and when admission to hospital will occur, where the client would like to die and the use of life sustaining medical intervention (Department of Ageing, Disability and Home Care, 2005).
Palliative Care services provide a range of services to clients and their families. These may be nursing, medical care including consultancy to the person’s treating medical doctor, day care, counselling, diet advice, loan of equipment, physiotherapy, occupational therapy, social workers, bereavement support, pastoral care and a wide range of support from trained workers. Palliative Care services are involved in the care of clients who are distressed, or who are at risk of being distressed as a consequence of this process. A Palliative Care service may be provided, in collaboration with the client’s primary care team, at any time from the diagnosis of a condition with a limited prognosis until after the death of a client (Department of Ageing, Disability and Home Care, 2005).
The palliative approach consists of a core set of knowledge and skills, and can be used by all health professionals who are involved in caring for people with life-threatening or terminal illnesses. At this level, all nurses can undertake basic symptom assessment and management, understand the experiences of dying people and their families, engage in communication regarding individual needs and experiences, and consult with specialist palliative-care practitioners if the needs of these people are outside the nurses’ expertise (The Royal Australian College of General Practitioners, 2005).
The specialist interventions by practitioners from disciplines outside palliative care are sometimes required to assist in the management of difficult nursing problems. Examples include the involvement of a wound care nurse in the care of a malignant wound or the involvement of a radiotherapy nurse in palliative radiotherapy (The Royal Australian College of General Practitioners, 2005).
The specialist palliative care is provided by practitioners who have specialist qualifications and experience in the care of dying people and their families. These practitioners might work in specialist community palliative care services, in palliative consulting services in an acute hospital, or in a hospice. The involvement of such specialist services and practitioners is most relevant for patients with complex and difficult symptoms or care needs. Such specialist services might be involved in an advisory capacity, or can assume primary care of the patient (The Royal Australian College of General Practitioners, 2005).
Royal College of Nursing Australia (2000) state palliative care is proactive care which seeks to maximise quality of life for people and families facing life threatening illnesses. Dying and death are recognised as a part of life where opportunities remain for personal growth and social contributions. Care aims to be responsive to, rather than directive of, the needs of each person and their family. Although it has a major focus on interventions for the relief of symptoms, palliation is recognised as more than a physical experience. The influence of social, cultural, psychological and spiritual factors on the experience of symptoms and dying demands a style of care that does not focus on death as a medical event. In recognition of this, a multidisciplinary approach is an essential feature in the delivery of palliative care. Multidisciplinary in this context means nursing, medical, allied health practitioners and volunteers working together to meet the complex needs of the individual and their family. Nurses must be actively involved in palliative care. Specific ways enrolled nurses can be involved include: providing meticulous care of the patient, including making sure the patient is kept clean and dry. Nurses can offer food, drinks, and a place to rest to the family and encourage them to take care of themselves during the dying process; contacting local hospice centres and nursing organizations for more information; performing a literature search to obtain current guidelines and to validate and initiate evidence-based practice; The Specialist Palliative Care Nurse works with a multidisciplinary committee to assess and plan for appropriate end-of-life care and education. This committee includes upper management, physicians, pastoral care, nurses, and anyone else interested in this process; also includes people with differing opinions on the subject of end-of-life care so that all sides are incorporated into the final team; seeks support from physician champions, such as oncologists, who routinely address end-of-life issues; involving critical care nurses, physicians, pulmonologists, and surgeons in discussions about end-of-life care and invites them to join committee; SPC nurse also allows flexible work patterns and assignments for staff members who may become emotionally drained and need to change assignments; having supportive services in place to help nurses maintain emotional reserves and to give them an opportunity to vent their frustrations; identifies crisis intervention teams that may be available if needed for nurses and families; integrates pastoral care and psychological services to any committees that are formed; writes and implements policies, procedures, or protocols for withdrawing life-sustaining treatment according to current national guidelines (Royal College of Nursing Australia, 2000).
Palliative care is delivered on a continuum involving a number of elements depending on the status and needs of the patients. These include:
Therapeutic communication: is an important nursing intervention used to assist the dying patient and family (Brown and Edwards, 2005, p. 171). Empathy and active listening are essential communication components in palliative care. Empathy is the identification with and understanding of another’s situation, feelings and/or motives. Listening is an active process required in the development of empathy towards another’s feelings (Brown and Edwards, 2005, p. 171). Discussing prognosis and end-of-life issues has been identified as an important component of care by patients with progressive life-limiting illnesses, and their families. Being adequately informed is essential for such patients and their caregivers to participate in decisions about their treatment and care, to set goals and priorities, and to prepare for death. Clinicians need to provide information in a way that assists patients and their families to make appropriate decisions, be informed to the level that they wish, and cope with their situation (Brown and Edwards, 2005, pp. 163-170).
The information preferences and autonomy of the patient are paramount, yet it is vital to include family members in discussions surrounding the transition from curative to palliative care. The difficulty of negotiating the concerns of family members while also respecting the patient’s wellbeing and autonomy adds complexity to the task of discussing prognosis and end-of-life issues in a palliative care setting. There is also the potential complicating factor of requests by family members (often a culturally related issue) to withhold information from the patient. As for all issues, it is important to make repeated efforts to help family members understand the patient’s condition; the diagnosis of any advanced disease is a major crisis for the patient and family alike (Brown and Edwards, 2005, pp. 166-171; Hodder and Turley, 1989, p.69).
Lugton (2003, p. 4), states the diagnosis raises many issues fundamental to human existence, for example, fears of annihilation, abandonment, helplessness, and loss of control. In palliative care, where patients have to live with a degree of uncertainty as to the possible course their illness may take and the length of life that may expect, hope is a major issue. People’s emotional response to terminal illness can determine whether they live actively and positively, maintaining a hopeful outlook, or whether they are consumed by fear of what is happening to them or have anxieties about the future. A terminal illness is often described as a ‘hopeless’ situation, yet despairing attitudes about the effectiveness of treatment or about the person’s ability to respond to the knowledge of impending death may mean that avenues for the relief of distressing symptoms are not fully explored, or that communications with the family or with healthcare professionals are blocked. It is important to maintain the delicate balance between realistic hope and acceptance of the inevitable in palliative care. Lugton (2003, p.4) states that dying people and their relatives need encouragement to believe that symptoms can be controlled or alleviated even when the disease is incurable, that dignity can be maintained and that they themselves will have the courage as well as support from professionals to enable them to cope with crisis. Kreiger (1982), in Lugton also describes the four phases of terminal illness and the hopes the patient may have during each of these phases. The first phase, the patient hopes that there has been some kind of misdiagnosis or that the illness will turn out to be curable. As time passes, patients move to the second phase where hope for successful treatment predominates. People may move to a third phase of hope when they are told that nothing more can be done to cure them. Hope is then focused on prolongation of life. Finally, hope for a peaceful death is the main concern. Hope becomes centered on the relief of physical symptoms, the maintenance of dignity and the wish to be loved and forgiven (Lugton, 2003, p.5). Health professionals begin the process of communication, by listening and asking open questions. Nurse’s roles should be to alleviate their fears by giving appropriate information and support and by the assurance that we will meet any problems together. Dying people and their families need to know that we are interested and skilled in their palliative care as we were when there was a possibility of cure. Skilled support involves giving information when it is perceived to be needed by patients or relatives and being alert to situations when patients and relatives may be anxious. Information should be tailored to the individual’s need. Information should be given in a way that is not unduly negative or falsely reassuring. Buckman (1992) suggests a simple phrase: “We’ll plan for the worst but hope for the best” (Lugton, 2003, p. 6). Successful palliation offers as sensitive, supportive approach to families and patients, as well as availability and practical help for all who need it. Optimum symptom control is the basis of the holistic approach. It is difficult to help patients accept impending death when they remain in severe pain. Drug and non-drug methods may be employed to relieve pain so patients may move toward a death that is appropriate for them (Hodder and Turley, 1989, p. 9).
Pain assessment is the initial assessment nurses do when patients first present with pain or develops a new pain, encouraging a patient to tell their ‘pain story’ gives clues to the cause of pain and the effect of previous treatment (Kinghorn and Gamlin, 2002, p.16). The assessments of the physical components of pain are covered in well designed pain assessment tools and charts usually include site or sites of the pain (patients with cancer often have more than one site of pain, pattern of pain (is the pain worse at any time of the day or night?); aggravating factors (does movement or position affect the pain); relieving factors (concentrating on previous medications or interventions) and the patients description of the pain (what does the pain feel like? i.e. aching, dull, shooting, burning, etc.). After these assessments have been performed it is necessary to formally determine the response to treatment. One of the most neglected aspects in pain assessment relates to treatment response. Failure to do this results in the administration of ineffective drugs and at worst increases distress through unwarranted side effects. When a patient has started taking a new analgesic it is important to determine if this is being effective. The effectiveness of the analgesic administered must be evaluated by asking the patient to rate the severity of their pain(s) at a time when you expect the drug to have reached its maximum potential benefit (Kinghorn and Gamlin, 2002, pp.16-17). Nurses work with patients and their families to identify the source of the pain and ways to relieve it. Pain may be managed with drugs or by other means such as massage therapy and relaxation techniques. Medications and treatments are reviewed, and a psychosocial history is taken. Many patients regard an increase in pain as a sign that their disease is progressing or that uncontrolled pain is inevitable. This can lead to feelings of despair and hopelessness (Woodruff, 2004, pp. 53-74). These patients need reassurance that their pain can be controlled and that their quality of life can be maintained. Pharmacologic therapy is the mainstay of pain management in patients with advanced disease. The majority of patients can attain good pain control with the use of opioids and adjuvant medications. Simple means of administration such as oral, transdermal, or rectal can be used in managing the majority of pain syndromes (Woodruff, 2004, pp. 96-108). Principles of good pain management include a thorough initial assessment and frequent reassessment to monitor the efficacy of treatment and the onset of side effects. Physicians need to be knowledgeable of the types of pain syndromes while assessing pain. Proactive treatment of side effects, appropriate escalation of medication, around-the-clock administration, and frequent assessment are all paramount to good pain control. Frequent assessment, rapid intervention, and appropriate use of opioids and their adjuvants are requisites for adequate pain control and an optimal quality of life (Woodruff, 1999, pp. 41-66). As per interview with the registered nurses at Greenslopes Private Hospital 2008, enrolled nurses assess patient’s condition and liaise with the registered nurses about pain management analgesics administered to the patient and its therapeutic effects or the lack of it on the patient. Enrolled nurses can also help the patient by making them more comfortable by repositioning, massage and other therapeutic diversions such as playing music and applying hot packs.
However, some people with a terminal illness seek greater control at these difficult times at the end of their life, and would like to have more control over the timing and circumstances of their death. For many of these patients, their suffering is not simply the result of physical pain, but of the loss of autonomy, the inability to participate in activities, the loss of bodily functions and the loss of dignity that can accompany terminal illnesses (Brown and Edwards 2005, p. 170).
Kinghorn and Gamlin (2002, p.35) state that often people have to deal with a variety of symptoms that can include loss of appetite, nausea, weakness, breathing difficulty, bowel and bladder problems and confusion. These symptoms can be distressing for the patient and palliative care can help provide a relief. Palliative care aims to relieve physical, psychological, social and spiritual symptoms. The assessment of symptoms and symptom distress is, therefore, a vital aspect of nursing patients with advanced and incurable disease. Symptom management should be guided by a comprehensive assessment that incorporates an understanding of the multidimensional nature of symptoms and quality of life for the individual. Symptom control is a major goal within palliative care and, if the success of this goal is to be measured, adequate methods of assessing symptoms and the distress they cause are required. The enrolled nurse monitors and assesses the patient’s condition and makes necessary notes in the progress notes and also advises the registered nurse of the same. They also help alleviate the symptoms under the supervision of the registered nurse and within their scope of practice, as per interview with the registered nurse at Greenslopes Private Hospital, 2008.
Kinghorn and Gamlin (2002) state that in 1989 Dunlop carried out surveys of symptoms; the ten most common prevalent symptoms identified were weakness, dry mouth, anorexia, depression, difficulty in sleeping, pain, swollen legs, nausea, constipation and vomiting. Assessment is a vital aspect of patient care. It forms the basis for any subsequent intervention. Therefore, the purpose of nursing assessment is to provide an accurate picture of the patient’s current position. It is important that nurses, together with other health care professionals, can establish the needs of patients receiving palliative care accurately, so that care can be planned for any physical, social and psychological needs. In this way, the quality of life for these patients can be optimised. To achieve this level of assessment, the nurse needs to collect information about the patient’s current medical condition and also the patient’s beliefs, expectations and understanding of the situation and how he or she is coping with what is happening (pp.35-40). It is important to remember that symptoms usually change overtime. The symptom itself may remit or recur, or its characteristics may change. In practice, repeated assessments throughout the course of the patient’s care will allow this to be monitored adequately. Nurses are important members of the multidisciplinary team and play a major role in promoting comfort for the patient with symptoms other than pain. Identifying patients’ problems and using research-based strategies to prevent, alleviate and comfort are among the skills needed. Effective communication and critical thinking are vital if nurses are to care with both their hearts and minds. Keeping abreast of developments in symptom management will allow nurses to continue to offer evidence-based care, but their influence is needed to shape the agenda for future research so that an appropriate focus is placed on nursing issues (Kinghorn and Gamlin, 2002, pp. 59-60).
Palliative care focuses on the person as a whole and offers a wide range of support services such as social, psychological, emotional and spiritual guidance for the ill person. It also offers bereavement support and can help the family work through emotions and grief regarding the illness and death of a loved one (International Council of Nurses, 2006).
Palliative care services also provide caregiver support for family members and others who are often concerned about whether they will be able to cope, especially when palliative care is provided at home. Palliative care services that help the family cope include: advice and assistance from health care providers such as nurses and doctors who are skilled in providing palliative care; instruction on how to care for the person (how to give medication, prevent skin problems, recognize signs, call for help, etc.); home support services that provide assistance with household tasks such as meal preparation, shopping and transportation; relief for the caregiver. Sometimes a volunteer stays with the person so the family caregiver can go out. In other situations, the person who is ill may go to a day program or enter a hospital or long-term care facility for a short period of time (International Council of Nurses, 2006).
Palliative care services can be provided in the home, in community-based settings like nursing homes, palliative care units, and in hospitals. People who are dying need to be able to move freely between these places, in response to their medical care and support needs. The pattern of care will be different for every individual, and may depend on factors like: geography, services in the area, and the needs and desires of the person, their family members and friends. In general, palliative care is best provided within close proximity to the person’s local environment and community (International Council of Nurses, 2006).
Home, this is the predominant setting globally for the terminally ill. Care at home is generally provided by relatives and friends. The health system sometimes provides support to families and other care providers. Where home-based palliative care services are available, they are most commonly provided by community or public health nurses visiting people in their homes. The home-based model has become more dominant with the increase in HIV/AIDS and other illness such as multiple sclerosis, stroke and cancer (International Council of Nurses, 2006).
Hospitals, in most western countries, the majority of people are cared for and die in hospitals, but there are growing concerns about the quality of care and use of invasive treatments even for terminal illness and during the end of life. Hospital based palliative care teams usually involve nurses and other professionals and are predominantly available in Western Europe and North America. Nurses play a key role in direct care and in an advisory capacity in multidisciplinary teams to advance palliative care in hospitals (International Council of Nurses, 2006).
Day care and drop-in clinics: palliative care is also provided through day care services and drop-in clinics in hospitals, hospices and in the community. In some countries, these services may be taken to people’s homes, thus providing family members and other carers “time off” from the burden of care. However, unless the health team is well staffed with competent nurses and other professionals, the quality of care, such as pain management, can be compromised due to restrictive nursing practice acts that do not allow prescriptive roles for nurses (International Council of Nurses, 2006).
Hospice can be in freestanding facilities, hospitals, and nursing homes and other long-term care facilities. Palliative care in hospices provides a homelike environment and requires a team-oriented approach. Nursing care is focused on caring for the person and their families. Nurses work together with doctors, social workers, chaplains, therapists and voluntary staff to support the terminally ill and the family members with their needs and concerns (International Council of Nurses, 2006).
Regardless of where it is provided, palliative care should be respectful of religious and cultural beliefs of the person and family receiving care. The principles of palliative care should be adapted to the setting and the needs of those receiving care (International Council of Nurses, 2006).
Nursing roles in palliative care; issues of death and dying are highly emotional human experiences and competent and compassionate care can make a difference to the pain and suffering of the patient and the family. International Council of Nurses (ICN), in its position statement on Care of Dying Patients and Their Families, affirms “…the nurse’s role as fundamental to a palliative approach that aims to reduce suffering and improve the quality of life for dying patients and their families through early assessment, identification and management of pain and physical, social, psychological, spiritual and cultural needs”. Palliative care is a nurse-led service that involves complex decision-making and leadership (International Council of Nurses, 2006).
Nursing roles and competencies in palliative care involve three main areas: Firstly, working with dying patients and their families: Nurses are expected to establish and maintain a therapeutic relationship. In doing so, the nurse communicates effectively and provides information, emotional and spiritual support to the patient and the family. The nurse works to create environments conducive to peaceful and dignified death, and to effectively manage of symptom control, including pain management. Secondly, working with health and social care professionals: Nursing roles include coordinating services, making referrals to other services, such as financial help and advice, and supervision and training of others including family care providers and assistant nursing personnel. And thirdly, working with managers, policy makers and planners: Nurses work with managers, policy makers and planners in team building and support, setting goals and priorities, managing resources, monitoring care outcomes, supporting staff to deal with a sense of “collective loss” when caring for dying patients, and providing overall nursing leadership to ensure quality of care (International Council of Nurses, 2006). The Queensland Nursing Council in the Queensland Nurses Forum, (2008), states that advance practice for the enrolled nurse occurs within the scope of practice “is characterised by greater and increasing complexity, and exists on the continuum beyond beginning practice.” They further state that the “endorsed enrolled nurse demonstrates advance practice within each of the following four domains: care delivery/clinical responsibilities; learning and inquiry; leadership responsibilities; networks partnership and teamwork responsibilities.” They also state that while these domains are listed separately, in practice, they are interrelated. With this criteria in mind, the enrolled nurse would be expected to undertake further study as part of their ongoing career development in this speciality nursing environment.
Challenges in palliative care; a key aspect of palliative care is effective pain management and control. One of the main challenges is access to pain medication, especially opioids. These drugs need to be legally acceptable, affordable and available when needed. Nurses have a key role in developing national guidelines on the availability, prescription and safe storage of opioids and other drugs used in palliative care. Other challenges include restrictive nursing practice acts that limit nursing functions in prescribing medicines for pain control, lack of specialised training in palliative care and poorly developed home-based nursing and support services (International Council of Nurses, 2006).
Palliative care also raises ethical issues and dilemmas for nurses and other health care providers. These issues and dilemmas are best addressed by adhering to the following principles: respect for the patient’s and family’s needs and choices; open communication tailored to each patient’s and family’s needs and preferences; full involvement of patient and family in care; agreed goals of care, negotiated with the health team, patient and family; and regular assessment and review of goals and needs. Ethical and legal issues differ widely and nurses should be aware of their professional codes of conduct (International Council of Nurses, 2006). In making ethical decisions the nurse needs to be aware of key ethical principles, the values that influence the approach to ethical issues and the tools to justify decisions (International Council of Nurses, 2006). The nurses have a role in ensuring there is common understanding and respect of the ethical principles affected by actions, and to constructively debate against issues that would not otherwise be ethically permissible. While doing this the nurse has a key role in promoting the autonomy of the patient if they are unable to do this for themselves, or if part of their competence is eroded, and in keeping the patient informed about decisions involving them if the patient wishes to know. Nurses need to utilise their knowledge about the principles of ethics, awareness of own values and those imposed on health care practitioners and only to give consideration to nursing interventions where the justification of the care offered should be ethically permissible. Being aware of differing theories the nurse is better prepared to come to a balanced and informed decision. Nurses are accountable for their actions; ignorance would not be a defensible justification should a harm be incurred by the patient when action or omission was caused by nurses (Kinghorn and Gamlin, 2002, pp. 221-222). Ethical problems; perhaps the most common dilemma facing nurses who care for those who are dying relates to requests to hasten death. Debates about euthanasia in the media commonly portray euthanasia and palliative care as representing opposing views about end of life. In fact, the clinical goal of a “good death” is common to both. Although it is important that nurses be familiar with the public debate about euthanasia, nurses also require advice on how to deal with the requests that they receive from people for assistance to die. Nurses also need to ensure that their own viewpoint is represented. Nurses are commonly involved in conversations about care and treatment options with patients and their families, and are often required to care for people whose views differ from their own. Nurses must be able to respond in ways that are respectful of patients and families, while remaining true to their own moral and legal position (O’Connor and Aranda, 2003, pp.61-62).
Hodder and Turley (1989) state that Australian society is comprised of people from 110 countries, speaking some 160 languages. Their cultures differ in varying degrees from the dominant Anglo Australian which has been thoroughly institutionalised in a whole range of structures, including health care, education and professional systems, the legal system, and not least, the general structure of Australian society. Culture includes a particular people’s values, value systems, beliefs and ideologies which give meaning, logic, worth and significance to their existence and experiences, within a particular context. Rituals are developed to provide definite ways of dealing with illness, misfortune, death and the fear of events. These rituals have profound psychological, social and protective functions within a specific cultural context. Illness, dying, death and grieving are among the most sacred and significant experiences of all human societies. To establish a meaningful, effective and caring relationship with individuals and families, health professionals must recognise and support the rituals associated with death and mourning (Hodder and Turley, 1989, pp. 68-69).
Life experience of being a sexual is likely to have been very different for woman than for man. Each one of us, whether helpers, friends or intimates of a man or woman dying with terminal illness, will bring our own experience to our assumptions about what is likely to be of value, to be sexually healthy for that patient. Most of us are very private about our sexual pleasures and fears, sexual fantasies and expressions. We usually prefer to pretend our patients are asexual than to take the risk of exposing something of ourselves when inviting sexual discussions with them. This preference is even more likely to be shown when we are working in some way with people we know are dying. As carers of the dying person, we need to have the confidence to recognise the powerful influence the constraints of gender have on our beliefs and values (Hodder and Turley, 1989, p. 78).
Spiritual care, religious care and pastoral care have been used in the palliative care literature to describe similar functions. There are however significant conceptual distinctions between the three terms. Traditionally pastoral care has been understood as a religious ministry carried out by ordained clergy, and has frequently been equated with spiritual care according to the religious tradition represented by the minister. Pastoral care today takes a holistic perspective: it is person centred, concerned with the physical, emotional and social, as well as the spiritual aspects of a person’s existence. Pastoral care seeks to address the whole illness experience, helping people to find their own meaning in it (Hodder and Turley, 1989, pp. 68-69). Spirituality may be defined in a variety of ways. Some definitions contrast spiritual and physical aspects of reality, emphasising the “other worldliness” of spiritual experience, some are ideological, others are functional, defining spirituality as a stance or attitude toward life irrespective of the actual uses of a person’s belief or perspective. Spirituality describes the organising centre of people’s lives; it is that which brings coherence or unity to the diverse elements of their experience, providing them with meaning and purpose, enabling them to transcend present dilemmas and move creatively into the future. In this understanding every person has a spirituality, not just ‘religious’ people, and so spirituality should not be identified with religious behaviour (Hodder and Turley, 1989, pp. 70-74). It follows then that spiritual care should be seen simply as maintain a person’s religious beliefs or introducing such beliefs to a person who has no religious affiliation. Some people will come to their dying with a religious system of belief which is in significant tension with their actual spirituality; their religion is a spiritual problem rather than a spiritual help (Hodder and Turley, 1989, pp. 75-80). Spiritual care, the nurture of spirituality, often involves helping people to become more aware of the underlying assumptions by which they live, so they can re-evaluate them in the light of their present circumstances. Spiritual care aims at enabling and supporting each person to acknowledge his or her existing spirituality, revises it if necessary, and affirm it in daily living and dying. The spiritual care’s goal will thus have to do with the quality of relationship and support which is offered rather than any preconceived changes which should take place in the other person (Hodder and Turley, 1989, pp. 80-96). The members of the nursing team in the palliative care setting cannot tell the patients what to do but can take the responsibility to ensure that the patients receive proper care from every member of the team. O’Connor and Aranda (2003), state the quality of relationship is the key to spiritual care. In forming such relationships, nurses are often the primary providers of personal support in response to spiritual crisis. Nurses should be intimately involved in a palliative care team’s assessment and development of a spiritual care plans. These contributions require cooperation with patients and with other members of the team, in particular with those who have expertise in spiritual care. Nurses make an indispensible contribution to spiritual care by creating an environment of care in which spiritual themes can emerge, including conversation and other interactions in which they pursue the strategy agreed by the team (O’Connor and Aranda 2003, pp. 85-86).
Nutrition and hydration: the presenting picture of someone requiring palliative care is often one of frailty and general cachexia. During assessment, difficulties with appetite, diet and fluid intake might be described. The nurse might also observe that the care giver is experiencing difficulties in providing a varied, nutritious, and appetising diet. These difficulties might be due to various factors – including the effects of treatment and the advance of disease. In providing appropriate nutritional support for a terminally ill person, an important part of the assessment process is to delineate these aetiological factors as clearly as possible. Because the person is in the final stages of life, there can sometimes be a view that there is no need to address nutritional and hydration needs in any comprehensive way. However, it is assumed that nutritional care is given to alleviate symptoms and not to seek a prolongation of life. Nutritional and hydration decisions are usually taken to satisfy daily comfort needs. Even if the person has limited life expectancy as a result of a terminal or chronic illness, people can, and do access the support of palliative care services at various stages of their illnesses, and it should not be assumed that everyone receiving palliative care is necessarily nearing death (O’Connor and Aranda, 2003, pp. 187-188). Most people with advanced disease experience some form of disruption in normal eating and resulting in malnutrition and is almost always irreversible. The role of the nurse in assessment of eating difficulties is vital. The assessment includes symptoms of illness that can contribute to the person’s disinterest in eating – such as nausea, vomiting, pain, or constipation – experience singly or in combination. Medications that are frequently used in palliative care, such as morphine and paracetamol, can have side-effects that are relevant in a nutritional assessment. Ascites, a condition commonly experienced by terminally ill people, can interfere with appetite, the ability to eat and the absorption of food. There comes a stage in the dying process when the person begins to lose interest in everyday events and activities that surround him or her. This typically includes a loss of desire for food and fluids and, at this stage of life; it gradually becomes clear that eating is burdensome. In this situation, the nurse needs to be clear about the goals of care. An important distinction needs to be made – that malnutrition and dehydration are different from hunger and thirst. For the nurse, a multidisciplinary assessment is of the utmost importance in determining the stage of the person’s illness. An inappropriate assessment of hydration needs can mean that unnecessarily burdensome attempts are made to provide such a support when the person is near death (O’Connor and Aranda, 2003, pp. 185-196).
Promoting hope while supporting grief: mourning is inevitable for people with advanced illness as they come to terms with the many losses that can result from their illness, its treatment, and its progression. In a trusting and safe environment, people will share their grief with relatives, friends, nurses, and doctors. These people must allow enough time to listen to the person’s distress. Sharing grief facilitates healing. Recognition and acceptance of grieving can be very reassuring for many people who are caught up in a turmoil of emotions. Grief waxes and wanes throughout the progression of illness, and nurses should therefore ensure ongoing assessment, and respond sensitivity to changing needs (O’Connor and Aranda, 2003 pp. 235-236). It is important for nurses to focus on hope, for hope is the lifeline for continued involvement with the life that remains. If a person has received more bad news, nurses can assist by reminding the person to keep some hope alive, by being present to answer questions, and by giving information, listening, and comforting. The nurse can check the person’s understanding, and re-emphasise what can be done. The willingness of the nurse to be present and share these difficult times helps to establish trust and allows exploration of the hopes and desires that are important for the person as he or she progresses through the illness (O’Connor and Aranda, 2003 pp. 235-236).
Bereavement, grief and mourning: despite often being associated with traumatic events, bereavement, grief and mourning are all inherent throughout our lives, linking closely to aspects of change. Our individual and societal attitudes towards dying and bereavement are not innate: our culture and our responses to life experience, both personal and professional, shape them. The impact and effect of the bereavement, however, is an individual response and can span the whole spectrum of human emotions (Kinghorn and Gamlin, 2002, pp. 147-148).
Ferris, von Gunten, and Emanuel, (2003), stated: “during the last hours of their lives, most patients require continuous skilled care”. This can be provided in any setting as long as the professional, family, and volunteer caregivers are appropriately prepared and supported throughout the process. The environment must allow family and friends access to their loved one around the clock without disturbing others and should be conducive to privacy and intimacy (p. 605). Medications, equipment, and supplies need to be available in anticipation of problems, whether the patient is at home or in a healthcare institution. As the patient’s condition and the family’s ability to cope can change frequently, both must be reassessed regularly and the plan of care modified as needed. Changes in the patient’s condition can occur suddenly and unexpectedly, so caregivers must be able to respond quickly. This is particularly important when the patient is at home, if unnecessary readmission is to be avoided. If the last hours of a person’s life are to be as positive as possible, advance preparation and education of professional, family, and volunteer caregivers are essential, whether the patient is at home, in an acute care or skilled nursing facility, a hospice or palliative care unit, prison, or other setting (Ferris et al, 2003,pp. 606-612). Everyone who participates must be aware of the patient’s health status, his or her goals for care (and the parents’ goals if the patient is a child), advance directives, and proxy for decision making. They should also be knowledgeable about the potential time course, signs, and symptoms of the dying process, and their potential management. When an expected death occurs, the focus of care should shift from the patient to the family and those who provided care. Even though the loss has been anticipated for some time, no one will know what it feels like until it actually occurs, and indeed it may take hours to days to weeks or even months for each person to realize the full effect. It is believed that the time spent with the body immediately after death will help people deal with acute grief. Those present, including caregivers, may need the clinician’s permission to spend the time to come to terms with the event and say their good-byes. There is no need to rush, even in the hospital or other care facility. Encourage those who need to touch, hold, and even kiss the person’s body as they feel most comfortable (while maintaining universal body fluid precautions) (Ferris et al, 2003,pp. 606-609). As a visually peaceful and accessible environment may facilitate the acute grieving process, a health professional, usually the nurse; should spend a few moments alone in the room positioning the patient’s body, disconnecting any lines and machinery, removing catheters, and cleaning up any mess, to allow the family closer access to the patient’s body. Respond to emotions with empathy. Most importantly, listen quietly to the person and allow enough time for the information to sink in. Elicit questions with a phrase like, “What questions do you have?” Ascertain what support the person has. Ask if you can contact anyone for them. Consider other support through the person’s church, Red Cross, local police, or other service agencies if it is needed. If the family chooses to come to see the body, arrange to meet them personally. Provide contact information for the physician, nurse, or other professional who can meet with them and/or make arrangements. Immediately after the death, those who survive will need time to recover. A bereavement card from the physician, nurse, or healthcare professional and attendance at the patient’s funeral may be appropriate. Many members of the professional team consider it a part of their professional duty of care to encourage follow-up visits from bereaved family members in order to assess the severity of their grief reactions and the effectiveness of their coping strategies, and to provide emotional support. Professional members of the interdisciplinary team can also offer to assist family members in dealing with outstanding practical matters, such as helping to secure documents necessary to redeem insurance, find legal counsel to execute the will and close the estate, find resources to meet financial obligations, etc. Bereavement care for the family is a standard part of palliative care (Ferris et al, 2003, pp. 609-610).
In anticipation of the event, it helps to inform the family and other professionals about what to do and what to expect, including matters such as when rigor mortis sets in, and how to call the funeral home, say goodbye, and move the body. Care does not end until the clinician has helped the family with their grief reactions and helped those with complicated grief to get care. Care at the end of life is an important responsibility for every health professional (Ferris et al, 2003, pp610-613).
O’Connor and Aranda (2003), state as CURE is not always an option, CARE is our main focus, and ‘Quality of Life’ is the ultimate goal. Holistic care encompasses all the strategies, efforts and gestures that convey respect for the deceased person and their family. Good palliative care finds its tangible expression in the proper, seemly, and dignified closure of one unique life and its relationships with others. Good palliative care involves exploring new meanings and building on new learning experiences. The subject of grief, bereavement and mourning is vast, complex and challenging. As human beings in our personal and professional lives we will experience bereavement and our responses will be individual. As nurses, we have the responsibility to support individuals experiencing the variety of bereavement responses, but the accountability to ensure that we are recognise our own limitations and access specialist help appropriately (pp. 201-202).
The registered nurses (interview 2008 at Greenslopes Private Hospital) state that the role of Enrolled Nurse in the palliative care environment: when a patient is admitted to the hospital, hospice, or a residential nursing home, in a sense we admit the whole family, as often the emotional pain of relatives and loved ones is a major consideration in the treatment of the person being admitted. A multidisciplinary team (MDT) approach means that the patient, family and others will be helped through this very difficult time.
The enrolled nurse role in the palliative care environment is very significant. Identifying and acting on problems associated with our patients is as much our responsibility as any other person in the MDT. When looking at symptom control our aim is to relieve, not necessarily cure. When we look at pain, it can sometimes be relieved by increasing the patient’s analgesia. Often this is a temporary measure as their pain may not be wholly physical – it could be emotional. We therefore have to be sure that increasing analgesia is the right option. We talk to the patients’ we try to find out if there are any other problems worrying them. And as we all know – a change of position or hot pack may also help to relieve pain! If it is emotional because of physically not being able to tidy up loose ends, or not having made a Will etc,. The social worker is called upon. If it is more spiritual, pastoral care is called in. By using the MDT all our patients needs are met by the most qualified members of our team – so I guess at times we do cure to a degree (Interview with registered nurses, 2008).
Bowels are another major cause for concern to our patients as most are on high and prolonged doses of morphine or the like. And we all know the side effects of that situation. We at the hospitals & hospices pride ourselves on our expertise in this area and have formulated a pretty much fool proof system to take care of this problem with very thorough documentation, follow up interventions and recording. This responsibility is as much the enrolled nurses as it is the registered nurses, and is mighty rewarding when success is achieved. So, yes Cure, you could say, has been achieved (Interview with registered nurses, 2008).
Wound management or prevention is another ongoing and difficult symptom for our patients, as most are in very debilitated states that we know are not going to improve. So when looking at a patient’s wound, what is our aim? Is it cure or care? Often we will start by taking the cure option, especially if the skin breakdown is in its early stages and we can call in the physios and exercise also helps strengthen the skin by stimulating cell growth to the area being treated (Interview with registered nurses, 2008).
We have other options also – we have Spancos on all beds and if required, air mattresses and other equipments are available. So while we strive to prevent, even with all these options, the decreased mobility due to their disease, pain and other symptoms, it is always an uphill battle and cure is not always a viable option. We do however, treat with all the latest dressing techniques on hand, and have had some successes, but for many of our patients, at some time, we as nurses have to sit back and assess the situation to see if the patient’s ‘Quality of Life’ is our focus, or are our many years of being programmed to heal is what we are actually doing. This is often a hard decision for us, but nevertheless, with the MDT approach we can come to a decision and act, this is often by still treating the wound. A daily or twice daily dressing for example, may often cause more discomfort and pain to our patients than the actual wound does, therefore, a decision is made to optimise the comfort of the patient. This may mean if the wound is able to be dressed say PRN or 3rd daily, this is what we will do, reducing unnecessary wear and tear on already fragile skin. So what have we achieved? Not a cure as this is usually not an option. We have however managed care and comfort with our focus being our patient’s ‘Quality of Life’ (Interview with registered nurses, 2008).
Nausea is another major symptom control problem as it is often caused by many factors, often like a ‘merry-go-round’ – one causes another that causes another and so it goes. Nausea may be caused by constipation, the disease process or medication etc, so if one symptom is eliminated it often relieves another. On many occasions this is the case with nausea. So often a cure is reached, but by the same token if it is not, we have to look at ‘Quality of Life’ by reducing the symptoms. So in this case, care and comfort is achieved (Interview with registered nurses, 2008).
The patient’s family and others play a major role in the comfort of our patients. If they have difficulty dealing with the impending death of a loved one, this can cause extra stain on the patients themselves. So being able to identify this is very important, and knowing the appropriate person to call is a must. As an enrolled nurse, this is also our responsibility and you are often asked some very tough questions by patients and their loved ones. Being able to answer them is essential. We often offer a shoulder to cry on, a cuddle or kiss and find this is a way of breaking the ice and gaining loved ones trust. Often the question is asked, “How long does he/she have?” I guess we have all been asked that question, and are often waiting for those little words to be uttered, knowing we have no answer. Being able to talk openly about their loved one’s ‘quality of life’ helps – how comfortable they are or look, that they seem to be pain free and that when it is time we will know, and that at this stage it is really up to the patients themselves as to how long they have. This often helps loved ones come to terms with this terrible waiting game (Interview with registered nurses, 2008).
Other ways of helping loved ones cope, is by suggesting they bring in special possessions of the patients. Reading the paper out loud or a book can help some times. Also, playing music that the patients like helps both patients and their relatives relax. Giving the patient’s loved ones the option to help you with the daily care of the patient by letting them help you wash them or suggest they maintain mouth care also helps the patient’s loved ones feel useful at a time when all else seems fruitless. So care and comfort has been achieved as cure is not an option. When death actually happens, no matter how much counselling and preparing our patients’ loved ones have had, that actual moment of death is still a shock, often filled with emotions of regret, elation, sadness, emptiness, pain, fear of the unknown and the realisation of being left to go on without one’s partner. Some cry, some can’t. Some feel so overwhelmed with all these emotions that trying to work through them is beyond comprehension, because where do you start? As an enrolled nurse at the hospital or hospice you are often right there, so you have to deal with their grief and, once again, we find a shoulder to cry on, a hug, a smile, even a tear from me is all that is needed right then. This is also a time for pastoral care, so again we have achieved care and comfort, from within our MDT and our family has received only the best from us (Interview with registered nurses, 2008).
Following on from this, we can have a wonderful bereavement follow up program offered to all our bereaved families and significant others. Some find this a very helpful part of their grieving process and often look forward to seeing staff again. So once again care and comfort has been achieved. What can we as enrolled nurses in a palliative care setting achieve? I would like to think for the most part we are able to help patients, families and loved ones through probably the most difficult time in anyone’s life and when it is all added up we have looked after the whole patient, the whole family and others needs during this very special, emotionally packed time (Interview with registered nurses, 2008).
REFERENCES LIST
About Palliative Care Australia, [online],
Available from: http://www.palliativecare.org.au/Default.aspx?tabid=1115 (17/03/2008).
American Academy of Family Physicians, 2001, Management of Common Symptoms in Terminally Ill Patients; part II Constipation, Delirium and Dyspnoea, [online],
Available from: http://www.aafp.org/afp/20010915/1019.html (10/03/2008).
Brown D and Edwards H, 2005, Lewis’s Medical- Surgical Nursing, Elsevier, Mosby NSW, Australia.
Department of Ageing, Disability and Home Care, 2005, Palliative care policy, [online],
Available from: http://www.dadhc.nsw.gov.au/NR/rdonlyres/C21BABCF-6001-400F-9D38-E4042FAD6281/1848/EndorsedVersionPalliativeCarePolicyNovember20053.pdf (20/05/2008).
Ferris F D, von Gunten C F and Emanuel L L, 2003, Education in palliative and end of life care, 2nd end, Chicago.
History of Palliative Care, [online],
Available from: http://en.wikipedia.org/wiki/Palliative_care#History (17/03/2008).
Hodder P and Turley A, 1989, The Creative Option of Palliative care, Melbourne Citymission, Victoria, Australia.
International Council of Nurses, (ICN) Code of Ethics for Nurses 2006, Palliative Care, [online], Available from: http://www.icn.ch; http://www.who.int/hiv/topics/palliative/care/en/
Interview with Registered Nurses and Enrolled Nurse, 2008, Greenslopes Private Hospital, Greenslopes, Brisbane.
Kinghorn S and Gamlin R, 2002, Palliative Nursing Bringing Comfort and Hope, Bailliѐre Tindall, Royal College of Nursing, NSW Sydney.
Lugton J, 2003, Communicating with Dying People and their Relatives, Ausmed Publications, Victoria, Australia.
O’Connor M and Aranda S, 2003, Palliative Care Nursing, A Guide to Practice, Ausmed publications Pty Ltd, Victoria, Australia.
Parker J and Aranda S, 1998, Palliative Care: Explorations and Challenges, MacLennan & Petty Pty Limited, NSW, Australia.
The Royal College of General Practitioners, 2005, Multidisciplinary carepath for palliative care: end stage care, [online], Available from: http://www.racgp.org.au/silverbookonline/4-2asp
The Royal College of Nursing, 2000, The role of the nurse in palliative care, [online], Available from: http://www.rcna.org.au
Woodruff R, 1999, Palliative Medicine: Symptomatic and Supportive Care for Patients with Advanced Cancer and AIDS, 3rd edn, Oxford University Press, Melbourne, Australia.
Woodruff R, 2004, Palliative Medicine: Evidence-based symptomatic and supportive care for patients with advanced cancer, 4th edn, Oxford University Press, Melbourne, Australia.
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