Specialist Palliative Care Nurses in the Community

‚ providing and evaluating spiritual care; and ‚ integrating spirituality into institutional policy. At the same time, to focus solely upon the beliefs and needs of the minority ethnic and religious groups may cause marginalisation of the majority or be seen to minimize these [35]. Therefore, a cohesive approach to understanding patients’ and families’ spiritual and religious needs in a hospice setting is required. It was clear within this study that even the practice of religious rituals related to the dominant RC caused some discomfort. Nevertheless, the prevalence of the need for formal education in the study’s findings is suggestive of an intervention which may serve to increase healthcare professionals’ confidence when providing care to patients from minority ethnic groups within the hospice setting. For nurses in this study, input from religious and community leaders was identified as holding potential value for informing their content. Finally, these findings reinforce the importance of the integration of religion and spirituality in the planning of both undergraduate and postgraduate health care educational programmes in the ROI.

It is surprising that only 13.3% of doctors felt that their basic training prepared them for palliative care in the com- munity. Moreover, although this sample was predomi- nantly an experienced group, there was no evidence that those qualifying within the past 10 years felt any better trained. Among the three broad groups surveyed general practitioners, community hospital nurses and community nurses-it appears that the community nurses, who included four specialist palliative care nurses, have undertaken most palliative care training since qualification. Recognition of this body of expertise by colleagues, and sharing of the knowledge and skills, could improve care of dying patients at home.

1 Palliative Care Unit, Azienda USL – IRCCS di Reggio Emilia, Reggio Emilia, Italy 2 Clinical and Experimental Medicine PhD Program, University of Modena and Reggio Emilia, Modena, Italy Abstract. Background and aim of the work: Many authors tried to clarify the palliative care nurses’ role, overall in the home care setting, but little is known in different settings of care. We aim to present a Specialist profile of palliative care (PC) nurses in an Italian hospital-based Palliative Care Unit. Methods: With an organiza- tional case study approach, we conducted a literature review on PC nurse’s role, and we presented the Special- ist PC nurses’ profile, describing competences and key related activities. Results: Our specialist profile high- lights that clinical activities are similar to the experiences described in the literature (symptom assessment and management, communication, interprofessional work), while training and research activities are new fields of interest that it’s important to explore and promote, most of all in our country. Conclusions: Sustaining the flex- ibility of the role, being recognized by colleagues and keeping the three dimensions connected are the major challenges: drawing up a specialist palliative care nurses’ profile can help the team to better define the role framework in an interdisciplinary context.

Write, deliver and evaluate internal and external education and training sessions on nutrition and specialist dietetics in relation to oncology and palliative care to medical staff, nursing staff, AHPs dietitians, other health care professionals, patients and carers as appropriate. Organise, deliver, facilitate and evaluate education and training sessions to the hospice nutrition link nurses with the purpose of improving their knowledge and delivery of service around nutrition matters. Act as a resource and support to them in the provision of this service.

In this theory, systems are divided into macro (larger), meso (medium) and micro (small) systems, which have sub-systems that are all interconnected (Walker, 2012:7; Payne, 2014:184). An example of this, when considering nurses, is that nurses as individuals belong to larger systems such as a families, churches, social groups, and geographical communities, and they contribute to, and play a role in these systems. Therefore, this theory views the individual person as part of larger systems, rather than isolated, and these systems are impacted when the individual is (Payne, 2014:185). The implication of this interconnectedness is that what happens in one system will inevitably affect the other connected systems, and this will be evident. For example, if a nurse is working overtime every day and giving a lot of her energy to her employment system, her role within another system, such as family may be affected as she may be exhausted and not be as present physically and emotionally to fulfil her role within her family system. Thus, a shift in relationships and roles within the entire family system to accommodate for her lack of energy would be required. This could extend to her role in other systems such as church and her community as well, thus demonstrating how her relationships may be impacted, but also how the other systems she forms part of need to shift to accommodate the demands that her employment system has on her. This is an example of a negative impact, however, the researcher also identifies that there may be positive shifts in nurses’ other systems as well, depending on their experiences of their work, whereby if there is a positive experience at work, they can bring this positive energy back to their other systems such as families, churches and communities.

Besides, we must also be aw of an increasing number of new cancer cases and increasing non-communicable diseases in the world's population as well as individual countries. These non-communicable diseases represent a great threat to the quality of life of the patient and relatives. Non-communicable diseases are accompanied by disturbing symptoms such as pain, dyspnoea, weakness, sleep disturbance, fatigue, nausea, etc. With early palliative care, we can mitigate these symptoms that can cost suffering of patients. Many studies show that palliative care has a positive effect on the conservation and enhancement of the quality of life of the patient. For such an approach, it is important that we educate health professionals work in palliative field, to be able to understand the importance of the principles, approaches and difference between palliative and hospice care. Only knowledge doesn't make the quality of palliative care, but it sets the foundations for implementation of palliative care, so it is also necessary to have experience in this area. The Government should promote and support the introduction, implementation, and research in the field of palliative care.

In 2002, the World Health Organization (WHO) de- fined palliative care as an approach that improves the quality of life of patients and their families fac- ing the problem associated with life-threatening ill- ness, through the prevention and relief of suffering by means of early identification and impeccable as- sessment and treatment of pain and other problems, physical, psychosocial and spiritual (1). Its focus is on the patient and their family, and the main goal is to promote the patient’s quality of life through various stages of the disease, relieving the patient of pain and suffering. Palliative care does not only relate to the final days of life, since it is often required during periods lasting for months, even years - from the diag- nosis of a terminal disease to the period of mourning after a patient’s death. It is provided by a competent and highly educated multidisciplinary team consist- ing of doctors, nurses, physical therapists, psycholo- gists, social workers, priests, occupational therapists, etc. Many authors state that nurses are indispensable links in the chain of palliative care. They spend the most time with patients and therefore their role in palliative care is of immense importance (2). Accord- ing to current estimates, slightly more than 60% of patients suffer from some oncological disease, while the remaining (40%) represent a spectrum of various diseases, from dementia and cerebrovascular stroke to end-stage liver disease, cardiac insufficiency, and chronic obstructive pulmonary disease (3).

What is specialist palliative care? Specialist palliative care helps patients and families to live as well as possible by providing high quality pain and symptom control, as well as practical and psychological support. We support patients with cancer as well as those with other long term conditions (eg heart failure, chronic chest disease and neurological conditions).

With increasing integration into mainstream healthcare, palliative care is now considered to be integral to all clinicians practice regardless of their clinical setting (2014b). However, the split between generalist and specialist palliative care can be problematic, with continuing debate about remit, roles and boundaries (Firn et al., 2016) (Gardiner et al., 2012). Although specialists in palliative care may be well positioned to manage patients with the most complex needs, there is a risk in specialists being called upon to see all patients with palliative care needs. This risk includes the potential deskilling of the non-specialist workforce (Gott et al., 2011), inability to meet patient need as demand outstrips resources, and ultimately to fragmented care as yet another provider becomes involved in the patient s care (Quill and Abernethy, 2013).

highlighted failings in communication in almost all cases (Dying without dignity, 2015). With increasing integration into mainstream healthcare, palliative care is now considered to be integral to all clinicians practice regardless of their clinical setting (2014b). However, the split between generalist and specialist palliative care can be problematic, with continuing debate about remit, roles and boundaries (Firn et al., 2016) (Gardiner et al., 2012). Although specialists in palliative care may be well positioned to manage patients with the most complex needs, there is a risk in specialists being called upon to see all patients with palliative care needs. This risk includes the potential deskilling of the non-specialist workforce (Gott et al., 2011), inability to meet patient need as demand outstrips resources, and ultimately to fragmented care as yet another provider becomes involved in the patient s care (Quill and Abernethy, 2013).

18. Key Worker Policy 12-3R-110 SPC team members do not often act as the key worker for patients, due to the advisory nature of the service, and the assigned key worker may change with the patient’s circumstances, condition and individual needs. However it is important for the patient and their family / carers and all relevant professionals to be aware of whom the key worker is at any one time. The key worker policy can be found in the evidence file which documents the process for agreeing, recording and disseminating details regarding any changes to the key worker whilst the patient is under the care of the SPCMDT.

Engagement with those who refer to a service was highlighted as an important aspect by Freiberger et al. (2016) for the success of referrals to exercise programmes for frail, older adults. SPC services are designed to encourage and enable individuals to life their lives to the greatest extent in the manner and setting of their choice (Department of Health and Children, 2001). With the stark staffing deficits within the organisation, there is no physiotherapy services to individuals in their own home or day care services. This ultimately impacts on the individuals choice regarding the setting in which they can access SPC physiotherapy services. Current evidence based also suggests that there are both physical and psychosocial benefits to individuals who attend group exercise programmes, however, it is not possible of offer this service at present due to limited staffing levels.

2008, however due to time restrictions this did not happen and the Abortion Act 1967 remains unchanged for the time being. The nursing profession endeavours to develop more responsive, patient-centred services. Opportunities for nurses, in conjunction with medical colleagues, to take a far more proactive role in developing abortion services across England, Scotland and Wales have been created as a result of the European Working Time Directive (RCOG, 2004a). In addition, the increasing number of doctors ‘opting out’ of providing abortion services has resulted in gaps in service provision, which has led to further opportunities for enhanced development nursing roles in providing medical termination of pregnancy.

In 2007, the Spanish Ministry of Health published a strategy to develop palliative care in the Spanish Healthcare System. In this document they analyzed the current situation of palliative care and gave some indications for its development; this strategy was revised again in 2011, with recommendations to be undertaken in the period between 2011 and 2014, which included aspects such as patients who are susceptible to receive palliative care, material or human resources to provide quality palliative care as well as guidelines to evaluate palliative care plans and aspects regarding research in this field. Therefore, the Spanish regulations show the need to combine two types of strategies: basic formation of all health professionals in palliative care and the design of specific programs in this area to enable professionals to allow them the possi- bility of intervention at all assistance levels [4–6].

Palliative care services and facilities can help meet the multifaceted needs of these patients and their families. Improve the availability of services and facilities, improve the capacity of spiritual service providers and volunteers, and better understand the funds available for services and facilities. The contact person can be someone (such as a regional nurse) or a regional center, and the palliative care network should be connected to the area to ensure familiarity with all local services and facilities. Services and facilities should have the opportunity to promote their availability in local multidisciplinary meetings or training courses organized by local organizations. It was found that psychological service, social service and spiritual service were not included in the classical care model of palliative care. From the Koper’s research, most of the interviewees think these services are not their job. Participation of all in services and facilities is certainly not always necessary. As expected, greater involvement and familiarity with these services will be beneficial to both patients and their families (Koper et al. 2018).

UK programme shows promise but services also need adequate investment Primary care has a vital role in delivering palliative care. 1 2 In most developed countries more people die in hospital than at home, 3 although substantially more people would prefer to die at home. 4 Primary care professionals play a central role in optimising available care, but they often lack the processes and resources to do this effectively. 1 5 The Gold Standards Framework for community palliative care 6 is a primary care led programme in the United Kingdom that is attracting international interest. 2 The framework enables general practitioners and community nurses to optimise practice by providing guidance through workshops and locally based facilitation on how to implement processes needed for good primary palliative care. It is supported by a plethora of practical tools, guidance documents, and examples of good practice. 7 It integrates many established aspects of primary palliative care: identifying patients systematically; naming a lead general practitioner and community nurse for each patient;

It is difficult to form a close relationship with the family of a dying person The family should be involved in the physical care of the dying person Families need emotional support to accept the behaviour changes of the dying person Families should be concerned about helping their dying member make the best of his/her remaining life Families should maintain as normal an environment as possible for their dying member Nursing care should extend to the family of the dying person The dying person and his/her family should be the in-charge decision makers Educating families about death and dying is not a nursing responsibility Giving nursing care to a dying person is a worthwhile learning experience Death is not the worst thing that can happen to a person I would be uncomfortable talking about impending death with the dying person I would not want to be assigned to care for a dying person The nurse should not be the one to talk about death with the dying person The length of time required to give nursing care to a dying person would frustrate me I would be upset when the dying person I was caring for gave up hope of getting better There are times when death is welcomed by the dying person I am afraid to become friends with a dying person I would feel like running away when the person actually died As a patient nears death, the nurse should withdraw his/her involvement with the patient The dying person should not be allowed to make decisions about his/her physical care It is beneficial for the dying person to verbalise his/her feelings Nurses should permit dying persons to have flexible visiting schedules Addiction to pain relieving medication should not be a nursing concern when dealing with a dying person I would be uncomfortable if I entered the room of a terminally ill person and found him/her crying Dying persons should be given honest answers about their conditions It is possible for nurses to help patients prepare for death

in the Brazilian context, there is a deficit in the knowledge of nurses who work in sectors that deal directly with patients with life-threatening diseases. However, it was perceived acceptance and search for more clarifications on the part of the nurses about the subject during the period of the research. The nurse understands that the applicability of the anticipated directives of will may positively impact on the reduction of cases of therapeutic obstinacy or futile medicine, since the patient can freely decide on which treatments he or she wishes to submit, respecting his right of choice, change what was previously decided. It was possible to realize that the lack of a specific law that guarantees and guarantees the use of advance directives of will is something that worries professionals about its use, although there are other legal mechanisms, without force of law, that can guarantee its use. In addition, as important as its implementation in the Brazilian legal framework, it is fundamental that there be education about the document, both for the professionals who work in the palliative care sectors, as well as for the terminal patient and family, because in this way, their importance can be perceived by society in general, which may have an impact on the process of drafting legislation on the subject. Given the results obtained, it is necessary a process of awareness of the society on the theme and creation of educational projects since graduation, extending to fields of action of professionals, aiming to provide assistance based on the knowledge of this document and rights assured to the terminal patient. It was perceived as limitations of the study the approach of only two hospital contexts that work with Paliação, thus suggesting the need for other studies, which would contribute to broadening the discussion about the document in the various sectors of society.

Background: Palliative care (PC) is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness through the prevention and relief of suffering by means of early identification, impeccable assessment and treatment of pain and other problems like physical, psychosocial and spiritual. Palliative care is traditionally viewed as being the intense care of a patient who is close to death. In recent years, the scope of palliative care has expanded to include patients who may live for many years with end stage organ failure or cancer. Aim of the Study: The study aimed to assess the nurses' knowledge and attitudes towards PC among nurses working in selected hospitals in Northern districts, Palestine. Subjects and methods: Descriptive, cross sectional study was used for conducting the study, A purposive sample consisted of 96 nurses invited to participate in the study. Data collected through; nurses’ socio- demographic characteristic, knowledge level, and Attitude level towards PC which is developed by the researchers. Validity and pilot study were examined . Results: Study results have shown that 20.8 % of the respondents had good overall knowledge towards PC, 59.4 % had training of palliative care, and 6.2 % of participants had good attitude towards PC. There was a significant difference between Nurses' qualification, experience, and training of palliative care towards Knowledge of PC. Conclusion: The nurses had poor knowledge, but their attitude towards PC was moderate. Recommendations are that due attention should be given towards PC by the national health policy and needs to be incorporated in the national curriculum of nurse education.

The current provision of palliative care services in the UK still largely favours patients with cancer. Meanwhile, those with other common end stage diagnoses such as heart failure, COPD, renal failure, neurological disease, and dementia, who have equally severe symptoms with similarly poor prognoses, may have reduced access to services or specialist advice, especially in the community—for example, lack of specialist support, Marie Curie or Macmillan nurses, reduced access to advice or equipment etc. “Do I have to have cancer to get this kind of care?” is a natural response from patients with non- malignant but equally serious conditions. The improvements in management for patients with cancer by community providers need to be transferred to patients with other conditions. As an approximation, each year every GP has about 20 patients who die, of whom about five have cancer, five to seven have organ failure such as heart failure or COPD, and six to seven have old age comorbidities, frailty, and dementia, with one to two sudden deaths. The less predictable trajectories of illness in the group with organ failure mean greater hospital involvement and more difficulty predicting the terminal stages and introducing supportive care. For all patients with end stage illnesses, irrespective of the diagnosis, it is still important to apply palliative care principles, to recognise deterioration, and to include such patients in service provision—for example, specialist advice on accurate assessment and control of symptoms, respite care, access to equipment, information transfer, and handover forms.