Palliative Care in Australia - Literature review Example

Name of Writer] [Name of Professor] [Course Title] [Date] Palliative Care in Australia Introduction Palliative care is the active care of people with a far advanced and progressive syndrome that is not responsive to cure. Two principles that underpin its philosophy include the person and family as the unit of care, and palliation of total suffering which encompasses physical, psychological, social and spiritual components (Palliative Care Australia Standards). The term suffering, however, is subjective and what may be considered unbearable for one person may be tolerable for another. It is often this discrepancy that can lead to ethical dilemmas in palliative care as people debate the goal of care, and acceptable courses of action. Conflict can arise between the dying person, family, doctor and nursing staff in critical situations that challenge each person's values, beliefs and morals (Australian Institute of Health and Welfare, 2005). Palliative care in Australia has now reached a watershed. More than ever before, there is greater recognition of the need for more integrated services across home and institutional environments. In Australia all of the skills of a family physician are utilized when providing palliative care to terminally ill patients. From being a part of the decision-making process for the transition from active care to palliative care to "stage managing" the act of dying, the family physician can help patients and loved ones face the challenge of death. One of the aims of palliative care is to enable a patient to live as normal a life as possible until death. This requires treatment of "abnormal" symptoms (Aranda, 17). In Australia researchers classify such symptoms into two categories: those that trouble the patient, either physically or mentally, to such an extent that they interfere with the patient's ability to live normally and those that are predictable or preventable. Some predictable symptoms may be prevented. For example, constipation may be avoided by prescribing laxatives at the same time narcotics are initiated for pain relief. The "death rattle," which can be terribly distressing to loved ones, may be limited with the use of anti-cholinergic agents such as atropine. Throughout the 1980s and 1990s federal governments reformed health service across institutions, home services and support services and this fostered the reduced development of programs which reduced the use of institutional care (Calder, 57). Though the growth has now slowed, palliative care services are currently challenged by the recent tendering processes, which demand that they demonstrate better links, improve continuity of care and outcomes for patients. This growth in palliative care services has created a need for well-educated palliative care nurses and many universities now run graduate programs (Australian Bureau of Statistics, 2004). Monash University's School of Nursing has developed a program of palliative care by academics with expertise and a strong commitment to education, research and service in the field. Literature Review Pediatric palliative care is an interdisciplinary practice. Input from physicians, social workers, pastoral care providers, and nurses, as for adults, are the cornerstone of palliative care for children as well. In addition, children may require input from specialists specifically trained in the care of children, such as child life specialists; art or music therapists; occupational, physical, or speech therapists; child psychologists and/or child psychiatrists; and other medical sub-specialists related to the care of a particular condition. Coordination of care between these services is critical and a central function of a pediatric palliative care team (Himelstein, 1755). The Australian Nursing Council Inc developed a Code of Ethics that consists of six broad statements. See table 1 in Appendix. They are not designed to provide answers to ethical dilemmas but aim to help nurses further explore and consider ethical concerns in nursing practice.( Australian Nursing Council Inc.) Value statements 1 and 2 have significant relevance when caring for the terminally ill person because they reflect the ethical principle of autonomy. Autonomy enables self-determination and decision-making. Difficulties arise though in aged care facilities when the palliative care resident is either cognitively impaired or unable to communicate their needs. Who then determines the terminally ill person's individual needs, values and quality of life? Many instances can be cited when the medical management of a palliative care resident has been controversial in nature. For example, a surgical intervention to treat an underlying condition in a disorientated person which the family are against (Sherman, 17). Often what can occur is a debate between stakeholders such as the doctor, family and nursing staff who all feel they morally know what is right for the resident who is no longer able to participate in decision-making. In determining competence the resident must be: fully informed of the issues, able to comprehend the issues, able to make a non coerced, voluntary choice, able to make a choice through reason, and, able to communicate their choice.( Randall, 18) If the resident is competent then they have the right to refuse treatment regardless of whether others think it is against their best interests. In the palliative care setting the resident is presumed competent and able to make a decision until proved otherwise? It is essential for nurses and other health care professionals to be personally aware of their own values, beliefs and morals (Australian Institute of Health and Welfare, 2005) . Nurses as a profession see themselves as advocates for patients' rights. In ethical situations where the resident is not competent, a nurse with blurred boundaries is in danger of confusing his/her values and beliefs with that of the resident's. The only individuals who truly know what is the right decision in regard to quality of life are the residents themselves. As society ages there is a greater demand on nurses working in aged care in residential care facilities (RCFs) to provide palliative care (Roger, 183). Entry to a nursing home is often acknowledged as a person's final place of residence and is the most likely place that they will die. Specialist palliative care services are often unable to provide unlimited direct support to residents within RCFs due to limited resources. A consultative service offered to generalist nurses working in these facilities can achieve two outcomes: that nurses receive specialist palliative advice and, that generalist nurses are up-skilled in the process (Roughead, 645). Good palliative care is proactive, and strategies put into place can avoid crises occurring. Up-skilling aims to teach generalist nurses to be more proactive in their management of palliative care residents and to be able to respond to their multiple needs (Australian Institute of Health and Welfare, 2003). Casemix Classification System The Australian National Sub-Acute and Non-Acute Patient (AN-SNAP) classification was developed in 1997 (Eagar, 7). This new casemix classification system, which includes hospital as well as community care, reveals the purpose of management an amendment in functional status or development in value of life rather than the primary patient diagnosis. The AN-SNAP classification comprises five Case Types, one of which is palliative care, and its development and results have been published elsewhere (Eagar, 185, Lee, 23). Casemix classifications have been developed and adopted for routine use in Australia for more than a decade. As with their international counterparts, Australian studies have suggested that the Diagnosis Related Group (DRG) system is not appropriate for some types of care, including palliative care, and both clinicians and researchers have argued for a different approach (Lee, 28). Palliative care: Australian Developments Prior to 1996 In 1993 the Australian Association for Hospice and Palliative Care (AAHPC) developed a draft Palliative Care Casemix Classification (PCCC) that would be applicable for use in all settings (Smith, 14). The PCCC consists of five clinically meaningful ‘Phases of Care’ that were initially defined as acute, stable, deteriorating, terminal and bereaved. This classification was empirically tested in a small study conducted as part of the Western Australia Palliative Care Casemix Project and similar ideas were tested in the 1994 Victorian Palliative Care study (Hindle, 33) and the 1994 NSW SACAN study (Eagar, 70). All studies indicated that the stage of the illness, functional status at admission and the number and severity of problems were the best predictors of resource consumption. However, the authors noted that the sample sizes were small and non-representative and suggested that the results should be regarded as indicative rather than robust. The definitions of the five Palliative Care Phases were revised by the Australian Association for Hospice and Palliative Care (AAHPC), the National Palliative Care Casemix Reference Group and palliative care clinicians around Australia. These revised definitions were tested for inter-rater reliability in a study conducted early in 1996 (Smith, 10). Palliative care: International Developments Prior to 1996 Toscani (p. 56) argued in the Italian context that the special circumstances surrounding a terminally ill patient require that a classification system for casemix and staging take quality of life as its main endpoint. Variables relating to functional status, physical symptoms, psycho-cognitive problems, and financial status were isolated in order to identify a limited number of groups of patients who differ in terms of quality of life and/or survival throughout the entire period of treatment in a Palliative Care Unit. Hospice Care and Palliative Care Palliative care promotes both physical and psychological care of patients with life threatening illnesses and when a patient is at this stage in their lives, palliative care is introduced to provide a pain free and comfortable death (Hudson, 262). There are two types of palliative care; they are 'Special palliative care' and 'the palliative care approach' known as general palliative care. Specialist palliative care is defined as "care provided by health professionals who specialize in palliative care and work within a multi-professional specialist care team" (NCHSPC, 2001). The palliative care approach is defined as "care provided by the patient and family's usual professional carers as a vital and integral part of their routine clinical care" (NCHSPCS, 2001). The palliative care approach in Australia has derived from special palliative care and can be seen being practiced in Australian nursing homes, residential settings and in hospitals. However, for a person to practice special palliative care they need to be qualified within this field which is why it is normally only practiced in hospices where the staff have a very good knowledge of the related disease (Kristjanson, 253).. In Australia, initially, palliative care only focused on the care of patients who were dying from cancer, but today it has extended to include patients who have been diagnosed at an earlier stage in the disease (Grbich, 33). In Australia palliative care is being promoted as a right for all dying people and is considering the needs of many people with numerous diseases. The hospice movement believes that the patient is still living and should be encouraged to have a life while they are dying. There is evidence that conventional care is not meeting the needs of non-cancer related patients and if it were to expand to meet these needs, it would mean an increase of power to the specialist palliative care providers and a drop in the profession of hospitals and doctors and in 1992 it was recognized that 'all patients needing palliative care should have access to those services. This was because it was thought that similar services are appropriate for patients dying from other diseases other than cancer, and palliative care should be developed for these patients also. There are many arguments on whether specialist palliative should be extended to patients who are dying from non-malignant illnesses such as heart failure, stroke patients or renal failure and the answer to this question, lies not in what diagnoses or diseases patients have, but what needs exist that can be met by and supported through advise from specialist palliative care services. Some of the more positive views on this are because all people who are seen to be dying from an incurable disease show the same symptoms of psychological distress and family anxiety (Field and Addington-Hall, 50). Palliative caring also allows patients and family members to express and acknowledge their grief to help them to accept their losses and discover ways of coping. Davies (p. 30) suggests that palliative care should be available to patients with other life-limiting conditions such as coronary heart disease. The issue of palliative care for heart failure patients has gained interest in government and statutory bodies (Department of Health, 2000, National Council for Hospice and Specialist Palliative Care Services, 1998). These organizations have recognized the needs of patients dying from terminal illnesses other than cancer. The aim of the National Service Framework states the need for "Multidisciplinary support in the community for those with established heart failure including home based interventions with access to social care, the local palliative care team for ongoing support and palliative care as needed"(DoH, 2000). Some bodies, however, are against specialist palliative care expanding to help those suffering from other non-curable illnesses. Yates (p. 113), considered the need for equity of provision of palliative care for patients with heart failure and other terminal illnesses and suggested that there are barriers to extending palliative care services such as lack of resources, skill mix, identifying which patients have a poor diagnosis and what patient wishes were. An example of this could be when a patient is receiving palliative care for heart failure they may in fact be able to receive curative treatment (Grande, 205). The medical profession has greater uncertainty about the facts about the disease and the predicted time of death for patients with non-cancer related illnesses. This is because cancer has been well researched and a specialist can judge the time limit of someone's life. Another barrier to extending palliative care is the cost. Field and Addington-Hall (p. 52) suggest that an extension of specialist palliative care services to patients who die from circularly diseases could double the cost of rescores needed. Harding (p. 71) argues that the drugs given are an adequate amount to ensure that patients come to a peaceful and dignified end. These arguments still continue today and will do so until the law about euthanasia is made apparent, even though palliative care means to affirm life and regards dying as a normal process which neither, hastens nor postpones death, just makes it more comfortable (Sidell et al, 25). Future of Palliative Care Research shows that for palliative care to be expanded, the knowledge about other diseases needs more study. Research identified that many people associate palliative care with people dying from cancer and that this idea has been initiated by the care provided in a hospice. It has also examined that the differences in palliative and curative care and recognized for both to be available together, specialist palliative care needs to be expanded. The development and implementation of Australian National Sub-Acute and Non-Acute Patient (AN-SNAP) means that, for the first time, it is possible to have a consistent approach to collecting palliative care data in Australia as well as a growing body of experience on how to progressively improve the classification over time. Lessons learned through implementation, in combination with further research, will be used to develop further versions of the classification and to further test its use in both clinical management and in resource allocation. The criticism of health promotion and social workers that too many health and welfare services overly concentrate on direct service provision at the expense of community development and political action will also be leveled at health-promoting palliative care if these dimensions are similarly ignored. There is less confidence about research or policy and community development among many in direct practice, either because of less experience or less training. Any health-promoting palliative care program will need to factor these deficits and insecurities into their staff and in-service training requirements. Works Cited Allan JA, Schaefer D: Do the learning needs of rural and urban general practitioners differ? Australia Journal Rural Health 2005; 13:337–342. Aranda: Palliative care, explorations and challenges, Sydney: MacLennon & Petty. (pp. 3-20). Australian Institute of Health and Welfare and Australian Association of Cancer Registries, Cancer in Australia 2001, Canberra, AIHW Cancer Series No. 28, AIHW cat no. CAN 23, 2004. Australian Bureau of Statistics, Occasional Paper: Long-term health conditions - A guide to time series comparability from the national health survey, Australia, 2001, Canberra, ABS, 2003. Australian Institute of Health and Welfare, Costs of diabetes in Australia 2000.01, Canberra, AIHW Bulletin No. 26, AIHW Cat. No. AUS 59, 2005. Boakes J, Gardner D, Yuen K, Doyle S: General practitioner training in palliative care: an experiential approach. Journal Palliative Care 2000; 16:11–19. Calder, R, Dimensions of Change in Health Care: Implications for Palliative Care, in Parker, J. and Aranda, S. Palliative Care Explorations and Challenges, MacLennan and Petty, Sydney, 1998, pp 56-67. Davies B: Family functioning and its implications for palliative care. Journal Palliative Care 1994; 10:29–36. Department of Health (2000), National Council for Hospice and Specialist Palliative Care Services (1998), available from http://www.publications.doh.gov.uk accessed 20 December 2004 Eagar K, Cromwell D, Kennedy C, Lee L. Classifying sub-acute and non-acute patients: results of the NSW Casemix Area Network Study. Aust Health Rev 1997; 20: 56-74. Eagar K, Gordon R, Hodkinson A, et al. TheAustralian National Sub-Acute and Non-Acute Patient(AN-SNAP) Casemix Classification: report of the NationalSub-Acute and Non-Acute Casemix Classification Study. Centre for Health Service Development, University of Wollongong, 1997, 6-7 Eagar K. The Australian National Sub-Acute and Non-Acute Patient (AN-SNAP) Casemix Classification. Aust Health Rev 1999; 22: 180-195. Field, D. and Addington-Hall, J. (1999) Extending specialist palliative care to all? In Dickenson, D, Johnson, M. and Samson Katz, J. (2000 Death, Dying and Bereavement, London, Sage, 50-55 Grande G, Todd C, Barclay S: Support needs in the last year of life: Patient and carer dilemmas. Palliat Med 1997;11:202–208. Grbich C, Parker D, Maddocks I: The emotions and coping strategies of caregivers of family members with a terminal cancer. Journal Palliative Care 2001;17:30–36. Harding R, Higginson I: What is the best way to help caregivers in cancer and palliative care? A systematic review of interventions and their effectiveness. Palliat Med 2003;17:63–74. Hindle D. The Victorian Palliative Care Casemix Project: statistical analysis and funding recommendations. Centre for Health Service Development, University of Wollongong, 1995, 33-35. Hudson P, Aranda S, McMurray N. Intervention development for enhanced lay palliative caregiver support The use of focus groups. Europe Journal Cancer Care 2002;11:262–270. Kristjanson L: The family as a unit of treatment. In: Portenoy R, Bruera E (eds). Topics in Palliative Care. New York: Oxford University Press, 1997, pp. 245–261. Lee L, Eagar K, Smith M. Sub-acute and non-acute casemix in Australia. Med J Aust 169: 22-25. Lee L, Goor E, Kennedy C, Walters S, Kirby L. Non-acute casemix in the Illawarra. Journal Qual Clin Pract 1994; 14: 23-30. MacDonald N: Priorities in education and research in palliative care. Palliative Med 1993; 7:65–76. National Council for Hospice and Specialist Palliative Care Services (2001), What do we mean by palliative care? Available from http://www.ncpc.org.uk/Publications accessed 10 December 2004 Nolan M, Keady J, Grant G: Developing a typology of family care: Implications for nurses and other service providers. Journal Advance Nursing 1995; 21:256–265. Palliative Care Australia Standards for palliative care provisions, 2nd edition, 1998, ACT, Australia. Roger J.; Charlie Lakin, K.; Prouty, Robert W.: Growth in residential services in Australia and the United States: 1997–2002. By: Stancliffe. Journal of Intellectual & Developmental Disability, Sep2005, Vol. 30 Issue 3, p181-184 Roughead, Elizabeth E.; Semple, Susan J.; Gilbert, Andrew L .: Quality Use of Medicines in Aged-Care Facilities in Australia. Drugs & Aging, 2003, Vol. 20 Issue 9, p643-653 Saunders, C.: What's in a name? Palliative Medicine,(1997). 1, 57-61. Sidell, M,Samson Katz, J. and Komaromy, C. (2000) The case for palliative care in residential and nursing homes, London: Sage, 25-26. Sherman, D.W. et al. Palliative care nursing: Changing the experience of dying in America, in Palliative care nursing: Quality care to the end of life, 2005, Springer Publishing Company, 16-18 Smith M. Palliative care casemix - stage 2 development: a national classifications for any site of care. In Proceedings of the 8th National Casemix Conference. Commonwealth Department of Human Services and Health, 1996, 8-12 Smith M. Palliative Care Casemix Classification First Draft. In Notes from the Palliative Care Workshop, Australian Association for Hospice and Palliative Care, 2003, 14-15 Toscani F. Classification and staging of terminal cancer patients: rationale and objectives of a Multi-centre cohort prospective study and methods used. The Italian Co-operative Research Group on Palliative Medicine. Support Care Cancer 1996; 4: 56-60. Wakefield MA, Beilby J, Ashby MA: General practitioners and palliative care. Palliative Med 2002; 7: 117–126. Yates P, Stetz K: Families’ awareness of and response to dying. Oncology Nurs Forum 2004; 26:113–120 Randall, F. et al. Palliative care ethics, A companion for all specialties, 2003, Oxford University Press, Oxford, 15-17. Australian Nursing Council Inc. Australian nursing code of ethics for nurses in Australia, http://www.anci.org.au/codeofethics.htm, 2001. Appendix Table 1: Code of ethics for nurses in Australia Value Statement 1: Nurses respect persons' individual needs, values and culture in the provision of nursing care. Value Statement 2: Nurses respect the rights of persons to make informed choices in relation to their care. Value Statement 3: Nurses promote and uphold the provision of quality nursing care for all people. Value Statement 4 Nurses hold in confidence any information obtained in a professional capacity, and use professional judgment in sharing such information. Value Statement 5: Nurses respect the accountability and responsibility inherent in their roles. Value Statement 6: Nurses value the promotion of an ecological, social and economic environment which supports and sustains health and well being. Read More