Human Life and Death: Health Care Professionals and Prognostication Impasses - Research Paper Example

INTRODUCTION: Birth is declared by the self, where as death is ordained to be declared by others or at least the saprophytes. Death is not an end by itself. Death of individuals or group of individuals is not the end of human race. Death is not even a pause in the evolution of humankind. It is just an internal interruption. Although death cannot be wiped off completely from our life-core, it can be acknowledged as ‘good death’ and human souls could be arranged to bid good-bye in a peaceful manner, when the same is preceded by illness. This can be achieved by way of providing appropriate end of life care. This is termed palliative care, which is efficiently been rendered at hospices. However, hospitals are providing relatively reduced quality palliative care. The perception and connotation of end of life (EOL) care is getting shifted from a pure clinical approach and assume emotional and psychosocial dimensions. End of life care currently provided faces several challenges including short of staff, lack of adequate knowledge, poor symptom management deficiency in prognostication and communication flaws. Awareness is now gaining momentum that palliative care must be provided throughout the course of illness as well as at the end phase1 of illness. The view has been stressed by various authors and research papers in this regard are pouring in. (Anthony F. Jerant et al, 2004) This paper attempts to examine in detail the end of life care strategies. My clinical area of practice primarily deals with palliative care. It comprises of care of the elderly with some cases of dementia. Nursing home have since been established as the place of care and site of death for growing numbers of frail older people dying either from natural causes or chronic progressive illnesses (Wowchuck, McClemence & Bond, 2007). Wowchuck et al 2007 suggests that while there may be some belief of what constitutes a decent death and willingness on the part of nursing staff to care for the patients, few members of staff as opposed to managers understand the meaning of the term palliative care. More resources should be dedicated towards training of healthcare professionals in order for them to give the best care during the End of life of the elderly. Training programs are to be evolved with such a spirit to bring about a culture of holistic approach in palliative care settings. For this to happen, foremost priority should be given to bridge the literal gap between the specialist palliative care professionals and generalist palliative care professionals. The Department of Health (DoH) 2008 cited by Thompson, Hookey, Salt & O’Neil 2009 suggest that all care settings should ensure that all people approaching the end of life have their needs assessed, examine their wishes and preference discussed and documented in their care plan. The practical blockades in implementing a good EOL care were pointed as the inefficiency in prognostication and staff side reluctance to deal with the emotional concerns of patients and their kin. The national end of life care strategy published by the DH 2008 made it clear that a change in approach in the delivery of care should allow patients to live in a place of their choice until they die (Henry & Hayes 2010). The government did not however consider the preparedness of health care professionals before publishing this ambitious project. This is supported by Henry & Hayes who suggests that senior clinicians and nurses lacked certain essential expertise required for the delivery of high quality end of life care. If staff and care givers have the necessary proficiency, knowhow and attitude it can however be vastly rewarding (Henry and Hayes, 2010) The end of life care strategy is good in some ways as dying in a place of own choice addresses issues of stress and anxiety when patients are forced to relocate to nursing homes, hospice or hospital. AlQurainy, Collins & Feuer 2009 suggest that terminal care in hospital is scarce with respect to the physical improvement of symptoms and the ability to tackle the emotional and psychosocial needs of patients. The work of this team provides a detailed analysis of the issue laying different challenges faced and viable solutions for the challenges along with prudent discussion. 1. CURRENT PLIGHT OF PALLIATIVE CARE SYSTEMS 1.1. Palliative Care Strategy: Before analysing the causes for successful implementation of palliative care at hospices if we attempt to fix the reasons for relatively less quantum of palliative services at hospital settings, we are to look at the social outlook of hospital settings first. Apart from the short staffed, less knowledgeable staff in hospital settings, the main view of hospitals stand in the way of rendering palliative care services. Hospitals are considered chiefly for diagnosis and treatment. A promise of increased longevity or at least reduced pain during death has become the expectation of hospitals. Administration of opiates – although meant for pain relief – has developed an unrealistic stargaze that death can be met with in deep sleep (Mary Bradbury, 1999, pp.10). The overall social assumption that any cause of death could be either resisted or postponed in a hospital setting figuratively inhibits to accept the fact that hospitals cannot get away with death. Thus, it becomes obligatory for health care professionals to create a culture in which the definition of palliative care – that palliative care is not to extend life or to stop death (Gloria Wold, 2004, pp.190) but to provide a painless and peaceful atmosphere until death especially at the final phase of illness – has to be nourished well among society. One more important reason as to why the patients select hospice care setting is the finance burden. Nursing home legislation focuses on promoting maintenance of function and preventing premature death. So, patients who opt for hospice care unit in a nursing home setting is to be attended and cared by a certified hospice program having a contract with the nursing facility. In this context, a patient in a nursing home setting receiving hospice care under Medicare Hospice Benefit Scheme part A is suddenly forced to bear the entire charges for the room and board. Consequently, the patient input in a hospital reduces especially in case of EOL care (Alexie Cintron, 2007, pp.573). Hospices retain the number one position in providing remarkable palliative care. Baldwin M. et al (2011) delineates the intricacies of successful implementation of palliative care at hospices. The authors ascribe the charitable funding mechanism combined with the NHS resourcing and extensive volunteer base clubbed with locally employed clinicians to the exclusive focus on palliative care setting and on goings at hospices. Although the fund raising modalities differ from hospice to hospice, 75% of their cost is employee-based and a ‘tariff’ approach is not adopted for palliative care. This lays much burden on their fundraising activities. The authors foresee a fund flow mechanism to emerge on the recent publication of EOL care strategy (Department of Health, 2008a) which earmarks specific monies funding streams to assist in the process it advocates for palliative care and treatment. However, they find the exact cascade of those funds through the varying layers of the strategic and commissioning bodies to the actual providers yet to be demonstrated. (Moyra Baldwin and Jan Woodhouse, 2011). The onset of AIDS epidemic had laid much pressure on the palliative care strategy in the early 1990s changing its face altogether. Palliation, prophylaxis and attempts to cure occurred simultaneously to get away with AIDS. It was through this sieve, the palliative care strategy was sifted to get the justice: The underlying criterion for access to palliative care is the need and NOT pathology (Royal College of Physicians, London, 2007). The IDC report2 admits that we are go a long way to achieve a 100% perfect palliative care rendering. The report has pointed out an innovative approach adopted by the government of Uganda in legally allowing all palliative care providing nursing staff to prescribe Morphine as part of their clinical practice so that easy access to palliative care medication is achieved. Moreover, morphine is provided free of charge by the Uganda government (pp.44). 1.2. A Global Picture of Palliative care Systems: 1.2.1. Australia and New Zealand: Australia and New Zealand have developed their strategies for palliative care in unison with the strategies of UK. New Zealand has included education programs in palliative care considerably. The government of New Zealand has increased funding for palliative care systems. Australian government too has increased its support and funding for palliative care systems with a view to enhancing education and training programs through NPCP – National Palliative care Program – managed by Department of Health and Ageing. The clinical and university based education programs at the Sydney Institute of Palliative Medicine provided apprentice ship models of training of other specialities with the College of Physicians. University based training program provides master level degrees and doctorate in palliative care medicine. (Odette Spruyt, Rod MacLeod and Peter Hudson, 2007). 1.2.2. Ireland: Palliative care system has beheld a gradual growth over the century in Ireland. Our Lady’s Hospice had celebrated its 124th year in 2004. The palliative care in Ireland has crossed prominent milestones. The modern worldwide Palliative care movement in 1970s and 80s had its impact in Ireland too. The concept of caring terminally ill patients in their own homes gained much recognition and promotion and the first palliative home care centre was established in Our Lady’s’ Hospice with the support from Irish Cancer Society in 1985. The rapid growth of the need for this service formed palliative care homes with large number of staff and patients. The AIDS epidemic in 1991 had paved way to cross one more milestone in 1997 when AIDS and Cancer home care teams amalgamated. The two satellite teams created in late 1990s one at Blackrock and the other at Tallaght in Adelaide Meath grew well to a stage when one of the teams from Our Lady’s Hospice moved to the newly opened Blackrose Home Care team in 2003. (Kaye Kealy and Gerladine Tracey, 2005) 1.2.3. Scotland: Palliative care services coordinated so far by a framework of managed clinical networks in Scottland has changed its face when the Scottish government accepted the recommendation of SPPC, the Scottish Partnership for Palliative Care to implement a comprehensive palliative and EOL care. Palliative care that was restrictive to cancer patients thus far has drastically changed its direction towards care based on need and NOT diagnosis. This turn took place in Scottland in 2006. (Stuart Milligan and Shirley Potts, 2009) 1.3. Specialist and Generalist Models of Palliative care: Generalist palliative care professionals usually turn their heads to specialist palliative care professionals only when they feel the symptom control and management require a second opinion from more experienced in deciding the EOL care. Such on-demand service model by specialist palliative care professionals creates a virtual gap between the two line-ups. (Carol A. Robinson et al, 2010). Specialist palliative care professionals are found to render remarkable palliative care to terminally ill patients. They are capable of sharing their expertise with generalist palliative care professionals too. Although specialist palliative care services are largely cancer-dominated, a nationwide initiative is on to focus the needs of people dying from non-malignant diseases in generalist palliative care settings at hospitals (Bridget M. Johnston, 2011). How the cancer specialists alone do a nice service and care to patients? It is because the entire atmosphere encircling the cancer patient – comprising the patient, carers and medical team – anticipate death unanimously in the near future. An emphasis is stressed in cancer treatment that good models of palliative care without a range of professional expertise were impossible. With this strong hold target, all healthcare professionals including even porters, cleaners and front office administrative staff like receptionists and secretaries on career pathways were included in the core competency training (Anne Garry, 2002). The cancer patients contribute additional ears to disease and treatment information from health care professionals. They prefer honest and more complete information regarding diagnosis, prognosis, symptom-burden and survival benefits related to the treatment. Their expectation includes physical and emotional support not only for treatment but also for EOL care. The results of this expectation from patients force health care professionals to learn more compassionate communication skills with patients and their kin. Thus, everybody in that ambit is prepared to accept and receive death without any vehement refusal. What the patient and relatives expect from the medical community is just the ‘date of death’. The Palliative care team is thus forced to work out an accurate prognostication. With a tangible ‘deadline’, the professionals become capable of recognising the importance of shared decision-making with patients and their relatives. (Marianne Matzo and Deborah Witt Sherman, 2010, pp.228) 2. PREFERRED PLACE OF PALLIATIVE CARE: The EOL care strategy 2008 published in July 2008 by the department of health enumerates some ten challenges encountered in providing effective palliative care. The report also finds out that out of these deficiencies and challenges physical, psychological and spiritual sufferings are experienced by patients, leaving many of them not living their final days in the place of their choice. As such, the definition – generalised concept – of ‘good death’ found in the DH 2008 has to be strived to be achieved in letter and spirit. It envisages Being treated as an individual with dignity and respect; Being without pain and other symptoms; Being in familiar surroundings; and Being in the company of close family and/or friends. as the components of good death. With the help of NHS, which contributed much to the implementation of GSF (Gold Standard Framework), LCP (Liverpool Care Pathway) and PPC (Preferred Priorities of Care), several innovative EOL care practices have been brought about early from 2004. The Gold Standard Framework outlines the expected outcomes of both terminally ill patients and the health care staff. A gist of this is presented by Janet Snoddon (2010) as follows: The patient is comfortable and free of symptoms. They are safe and supported in order that a ‘good death’ will occur according to their wishes. The family members and carers experience a feel of support, involvement and contentment. The health care staff feel supported within the team and sense a feel of self-confidence. Identification of terminally ill patients who are expected to die within 6 to 9 months is the key to successful delivery of GSF stipulations. The goals of Liverpool Care Pathway (LCP) subjected to regular revision facilitate the above said identification of terminally ill patients and their needs, which are to be cared for in a systematic way. The recent version published in the website of Marie Curie Palliative care Institute, Liverpool comprising three vital sections of (i) initial assessment, (ii) ongoing assessment and (iii) care after death can be used as an education and audit tool enabling the staff to monitor and improve the care systems. Tonks N.F et al (2011) however, cites the works of authors like Kelly (2003: 39) cautioning against the negative impact on the ‘intuitiveness’ integral to the caring process in the dying phase and reduction of a reality of death being put into flow charts and data boxes. The introduction of PPC document (Preferred Place of Care) by Pemberton et al as cited by Jean Lugton (2005: p.153) monitored number of deaths at home for all terminally ill patients in Lancashire and South Cumbria. Wishes of patients and carers regarding preferred place of care was attempted to be identified and discussed through this document. The PPC document highlighted the importance of opening up the discussion on issues that could not otherwise be resolved by addressing direct. The document addressed several issues such as support available to patients and carers and importance of holistic individual assessment. Keeping in view the above-cited initiatives palliative care services are under constant and rigorous research to develop facilitation of deaths at homes for those who choose to opt for it. Shortfall of specialist palliative care professionals with reference to the currently available inpatient beds virtually forces towards the development of palliative and EOL care services at current locations and emphasises the pressing need to promote patient choice regarding place of care and death. A very important and difficult to throw away aspect of dying at home has been elicited by Visser G. et al a (2004). The team has found the aspect of informal care provided by secondary care givers on terminally ill patients during their dying at home. These informal carers although render considerable amount of personal, household and management care are found to disadvantage the resident caregivers in other aspects such as income, health and assistance from other carers. Thus, the burden of informal care is one of the most important factors associated with home death. Interventions by formal caregivers directing towards the informal caregivers enabling them to bear the burden of EOL care thus become the need of hour in giving way to home death. Recognition of this factor of informal care giving and its relation with dying at home finds an apt niche in the findings of Carol Thomas (2005) that envisages inclusion of new factors in to the view of distribution of cancer deaths by settings – hospital, hospice, home and others. The author’s review on literature on the subject paid specific attention to the inclusion of new factors in addition to considerably confirming the understanding of known factors. Gomes B (2008) has carried out an extensive predictive calculation based purely on statistical database and trend analysis. He has concluded that by 2030 home deaths would considerably fall if enhancement of appropriate inpatient facilities and employment of sufficiently large number of skilled professionals were not given importance. Kellehear (2009) has attempted to fix a psychological merger with the elderly dying people. He opines that the current view of elderly dying people as the victims of anti-social behaviour and social neglect has literally veiled the EOL preference of the elderly people, thereby rendering the sociological and policy analysis negative. 3. CHALLENGES AND SOLUTIONS: 3.1. Lack of education: The main barrier in providing effective palliative care is the lack of knowledge on the part of health care professionals; their attitude that every available steps must be followed to extend life, even if they tend to erode the QoL of terminally ill patients. Perception of death as a medical failure instead as a normal course of event in human life span also impedes palliative care provision (Arthur G. Lipman, 2000, pp.5). Palliative care health professionals, especially those of generalist class, are required to possess competencies comprising quantifiable knowledge, attitudes and skills they demonstrate in the performance of safe, consistent, compassionate, state-of-the-art and evidence-based EOL care, which confirms to the wishes of patients and their relatives. Their skills are expected to address physical, psychosocial and spiritual/existential needs of patients and their kin (Marianne Matzo and Deborah Witt Sherman, 2010, pp.113). Whether generalist or specialist professionals or a combination of both kinds of palliative services is offered, palliative needs of end-stage patients are paramount to fulfil (Fliss Murtagh et al, 2007, pp.220). 3.2. Poor symptom control: Although symptom control is not a substitute for primary cancer care, its need increases as the time of death of the patient approaches fast (Kathleen M. Foley, 2001, pp.3). A good symptom control in palliative care addresses issues related to morbidity. Morbidity encompasses existential concerns like fear, depression, and concern about body image, sexual attractiveness, competence, isolation and abandonment. Adequate attention to relief symptoms may enhance intimacy (Shurin. S et al, 2007, pp.437). Symptom control in general may go hand in hand with disease control (Derek Doyle et al, 2005). However, there exist several obstacles to pain and symptom management. Deficient knowledge of clinicians, health care systems with limited access to health and patients’ under reporting of their pain are some of the main obstacles to be addressed for improving patient outcomes (Russel K. Portenoy et al, 2008, pp. 145). 3.3. Deficient prognostication: The difficulty in prognostication was mainly revolving around the over-estimation by doctors with reference to the life expectancy of terminally ill patients. They cannot factually be blamed for this; because they are chiefly expected to treat and not to foretell the eventuality of a death. AlQurainy et al (2009) found that accuracy of prognosis decreased as the duration of relationship between doctors and patients increased. They also found that accurate prognosis was not able to be materialised with a shorter time from last contact. Here, the attachment factor out of prolonged relationship with patients could not easily be neglected altogether. Ann Goldman et al (2006) suggested that clinical prediction was still the best predictor of life expectancy of patients. They also suggested that prognostication modelling techniques, which used artificial neural networks proved to be more accurate than the scoring model and regression logistic model. This view of Ann Goldman goes along with the assertion of Lauralee Sherwood (2010, pp.17) that when homeostatic disruption becomes so severe that it is not compatible with survival, then death occurs. These findings about prognostication deficiency are reflected almost in all literature suggesting constant research and identification of potential research subjects. Ann Goldman laid utmost importance for educating palliative care providers to reduce their apprehensions about referring patients to a palliative care study. They were of the strong view that this is the most powerful tool to increase identification of eligible subjects for research. They hinted that only educated providers can wipe off the wrong notion that palliative care systems imply giving up of hope and nourish in contrast that palliative care is to enhance quality of life. (Robert Graham et al, 2006) 3.4. Communication flaws: With regard to patient autonomy, most of the health care professionals are disposed to the concept of it. Although patient autonomy is considered the basis for health care morality, many professionals consider it as over-valued and given undue prominence obscuring the importance of other core ethics, namely beneficence, non-maleficence and care (Maartje Schremer, 2002, pp.). Health care technologies have grown well to offer varied outcomes; patients can receive alternative treatments closely matching with their values. Thomas May (2002, pp.13-16) puts forth an ingenious decision on patient autonomy. The author clearly puts ‘sorting out whose values inform which decision is a vital starting point of moral discussion’. Perusal of abundant literature on patient autonomy leads to create a healthy atmosphere of communication with patients in order to respect their autonomy as well as preserving the merits of medical team’s decision-making process. All health care professionals have to clearly understand that patient autonomy is not an entity to be taken away by the patients from professionals nor it is something bestowed by health care staff to patients and their kin. Patient autonomy is the part of health care transaction on patients’ side. This could well be achieved only through prudent and possibly transparent communication between medical team and patients and/or their relatives. The modern medicine names this as ‘patient-centred care’. Seeking patient and their family member’s participation in effective decision-making is the nucleus of patient-centred care (Valerie Hart, 2010, pp.8-9). Suppression or concealment of vital information about the previous history of patients leads to belated diagnosis and treatment. Likewise, belated disclosure or non-disclosure of clinical/medical decision by doctors mars the relationship with patients/kin, blurring the image of healthcare profession itself. When the patients lose their capacity to communicate with doctors or when they are swooned, the relatives of patients are consulted considering them to be the proxy decision makers (AlQurainy, 2009) at a moment when the time is running heavily short. Instead of affixing the role of proxy decision makers to the kin, they could well be consulted throughout the course of treatment – even when the patient is conscious and aware of the communication process – and derive vital information well in advance thereby a final hour hassle is avoided. Anthony F.J (2004) et al also found that lack of explicit negotiation with patients or relatives also resulted in failure to support patients in coping with difficult issues such as, place of living, managing decreased finances and engaging in plausible day-to-day activities. The team had expressly disclosed their concern that asking a dying patient to express his choice of treatment did not augur any healthy atmosphere. 3.5. Lack of planning: Lack of planning generally occurs in omission and not commission. Unattended, unexamined and unexplored sentiments of patients and their relatives and sudden changes including depression of patients lead to clinical procedures detriment to the patients care. Early detection and treatment saves human life. Likewise, early detection of death’s nearing affords patients and their families an opportunity to make most of the time that is remaining and minimise the burden of interventions, which in fact, would not extend the life of the terminally ill patients. (Joseph Fins, 2006). AlQurainy et al cites an Australian study on terminally ill cancer patients in which 49% was on iv fluids, 27% on iv antibiotics 78% having diagnostic tests within the last 48 hours of life. 46% was documented DNR (Do Not Resuscitate) 48 hours or less before death. This is sheer ignorance or reluctance on the part of medical team that focus only on their own procedural formalities and not on the patient’s or kin’s expression of ‘near death experiences’. 3.6. Social perception of death: Although Nature wields the powerful weapon of death against Man in all possible ways and moments, the western eyeshot of death – that it is a last taboo – does not seem to budge. This western trait causes hesitation and anxiety in communicating the fact of death at least at the final moment though not to patient but to their kin. This produces an ill effect that death is viewed as a medical failure. Here, oriental or Asian perspective of death should at least be thought of in place of rejecting it as rubbish; because, death is blind to human belief and non-belief systems. All sciences, including medical science, stem from doubts, questions to attain Truth, where as Spirituality stems from faith, and attempts to get to Truth. On embracing failure to get to Truth, science daringly admits its inability, leaving indelible track of its course. Spirituality on the other hand simply stresses faith, without any results of evidence-based experimentations, showing no difference between both attainment and non-attainment of Truth. Some people advocate scientific approach to spirituality. However, psychological studies have allowed spirituality to some extent to use as a tool to explain neural and neuronal activities of human brain. (Sue Wood and Peter Fox, 2005, pp.42-43) has thoroughly studied the mental discomfiture experienced by dying patients of brain tumour, dementia and advanced AIDS. They found that mood swings, irritability, confusion, oblivion and inability to recognise loved ones might occur in such patients. Motor neuron syndrome impairs the ability to speak, although their mind is clear. Their external bodily movements or non-movement could not easily gauge the emotional depression and feeling of bereavement as death approaches. Belief of any type – religious or otherwise – enmeshed in the warps and fills of human lifetime is ‘believed’ to guide the dying patient in his final hours. The authors hence, suggest not to take any negative attitude of the dying patient personally. Instead, they advise adjusting our attitude with a spirit of love and understanding thereby bidding a peaceful farewell to the dying. CONCLUSION: We are here to live. However, inevitable aspects of death and illness are to be overcome. Development in medical science has extended its helping hands to overcome many diseases. Still some diseases like cancer and AIDS are posing challenge to medical strength. With constant researches on the anvil to get away with life-threatening illness, palliative care/end of life care procedures are devised to preserve peace, dignity and good quality of life until death. Palliative care encompasses attending physical, psychosocial, emotional, spiritual and existential needs of terminally ill patients and their family members. Home care centres do the palliative care services at the living place of patients. Hospices excel in this field of service. Many hospices are rendering palliative care services in hospital settings by acquiring hospital services and sometimes spaces on rent. The financial constraints on these hospices are now attempted to be eased by government policies releasing sufficient fund and allowing them (the hospices) to indulge in fund raising activities at their liberty. Palliative care professionals are currently, split in two categories namely, generalist palliative care professionals and specialist palliative care professionals. The system of palliative care currently in vogue encounters several challenges including resource constraints, lack of knowledge on the part of health care professionals and prognostication impasses. Researches on palliative care improvement indicate several clinical nuances to be modified, altered and improved. However, it is the approach towards human life and death, which has to be refined. Turning a blind eye to death and rejecting it as something last taboo or final mystery is not helpful. Beholding a beloved one dying is gruesome; allowing the loved one to die in peace and serenity is the available way to sooth our own selves. Thus, to sooth our elves, in a near selfish note, let us react to the dying patients’ discomposure with a spirit of love and understanding. = end = Reference list – Alexie Cintron and Diane E. 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