End-of-Life Issues in Home Health Nursing - Literature review Example

End-of-life Issues in Home Health Nursing Introduction Home health nursing has become an important and often preferred setting among the elderly andthose under palliative or long-term care. Home-based care carries many advantages to the patient and even to the health care professionals. When this type of care is set-up right, it can potentially be the most ideal care available to the elderly and those under long-term care. Their home can offer them many advantages and comforts which hospitals and care centres cannot provide. And these advantages and comforts can make a big difference in the patient’s recovery, well-being, and state of mind. However, ethical issues and problems also abound in this type of care. In dealing with these issues, four main principles pertaining to health ethics may arise. These principles include: patient autonomy, beneficence, non-maleficence, and justice. These principles may find application in various issues including: quality of life, quality of care, pain management, sedation, and similar ethical dilemmas. This paper shall present an analysis and synthesis of the current literature and resources which pertain to the ethical issues in end-of-life care in the home-based setting. A support or rationale shall also be provided for these paper’s claims, decisions, or actions. The strengths, gaps, and limitations of these literatures shall also be presented in aid of critical assessment. With this paper, a thorough and evidence-based assessment of the issue can hopefully be achieved. Discussion End-of-life care, also known as palliative care is the type of care which mostly focuses on providing comfort to the patient who is already in the last days of his life. Patients under palliative care mostly suffer from an advanced or progressive illness and often have months or even just days to live. The definition of palliative care is adapted by the United Kingdom from the World Health Organization which defines it as “an approach that improves the quality of life of individuals and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering...” (Seymour, Witherspoon, & Gott, p. 2). End-of-life care is mostly about easing the last few days of the patient’s life, making them as stress-free, as pain-free, and as comfortable as possible. Many of these patients ideally chose their homes to face the last few days of their life. Community care nurses and, in some instances, private nurses are often assigned to these patients in order to make the last few days of the patient’s life as comfortable as possible. There are however, issues which surround this type of care. As was previously mentioned, there is a crucial question on the quality of life of patients receiving end-of-life care in the home health setting. In some instances, since patients are far removed from the hospital where they can easily have access to the latest and the most effective medical technology, they may not be receiving the best possible care in the last few months or days of their life. In a paper by Boillat, Gee, and Belavance (1997, pp. 2136-2142), they sought to assess how family physicians who are practising home care “resolve ethical dilemmas in clinical management of homebound patients and to examine whether the self-reported, theoretical ethical positions of these physicians match their actual patient management”. They assessed a Quebec community-based home care program with physicians covering 85 men and 65 women patients. This paper revealed that for majority of the physicians agreed with the ethical principle of patient autonomy. The study also revealed that most of the physicians agreed that patients should be placed in nursing homes even against the patient’s wishes if the patient poses a danger to self (Boillat, Gee, and Belavance, 1997). The paper concluded that family physicians covering home-based patients respect the ethical principles of autonomy; however, they also recognize the need to apply more practical solutions which may involve the admission of patients to nursing homes when the patient may not fit the home-based setting. In applying this paper to nursing practice, we can deduce the importance of respecting the principles of autonomy in home-based care. While the patients are in their homes, they still have the same ethical rights as if they were in the hospital or under medical facilities. Hence, as nurses, the patient’s autonomy should be respected and dignified. In a 2007 study by Moser, Houtepen and Widdershoven, authors set out to present a review of theoretical and empirical literature covering patient autonomy and how nurses support such autonomy. Their study was based on a premise that the concept of patient autonomy in nursing care can have various meanings. As such, nurses must resolve various ethical issues involving the application of patient autonomy. Their search covered various databases like Medline, Embase, CINAHL, and other online databases using search and the keywords patient autonomy combined with nursing. Negative freedom focuses on freedom of action and freedom from interference by others; whereas positive action emphasizes that people should direct their lives based on their personal convictions and reasons (Moser, Houtepen & Widdershoven, 2007). Most of the theories which mention negative freedom also define autonomy as self-governance; those which focus on positive freedom emphasize more on autonomy as identification, communication, and as goal achievement (Moser, Houtepen & Widdershoven, 2007). There were two studies which featured home-based care and three studies focused on hospital care. In general, the study concluded that patients preferred a mixed or combined application of negative and positive freedom. It also revealed that nurses cannot rely on one model of patient autonomy for their patients. More importantly, patient autonomy “requires in-depth knowledge of and interaction with, patients in the context of each particular nursing encounter because people express their autonomy through particular courses of action” (Moser, Houtepen & Widdershove, 2007, p. 357). In applying this study to the home-health setting, it is important for nurses to assess the patient’s situation first, include his personal preferences, and weigh such preferences against the ethical standards. Through such assessment, it is possible to make a thorough evaluation of the patient’s condition and subsequently make the right and ethical choice in the patient’s care. Chaturvedi (2007) makes his own discussion on ethics when he conducted a study which evaluated the various ethical issues in cancer and palliative care as seen in developing countries, especially India. He launched his own literature review for his study and he covered literature on pain relief and on palliative care. He reviewed and identified the ethical dilemmas in said literature, assessing ways in which ethical principles may be observed in delivering palliative care in said countries (Chaturvedi, 2007). His review revealed that patient’s preferences are often influenced by their family members and this makes the nurses and caregivers often confused on how ethical their decisions were. Moreover, these caregivers and nurses also encountered special ethical issues while participating in home-based care; such special issues include limited availability of oral morphine for pain relief, application of spiritual care, limited availability of palliative care services in the community setting, and limited palliative care education for family members and other caregivers (Chaturvedi, 2007). The author concluded that the basic ethical principles present difficulties and complexities in nations with traditional backgrounds. However, there is still a need for caregivers and nurses to uphold these principles and still attempt to handle the issue delicately while integrating both the traditional and the ethical into patient care (Chaturvedi, 2007). Nevertheless, this study indicates that there is a need for those who occupy authoritative positions to establish ethical standards in order to ensure the protection of patient rights. In another study, Fine (2001) sought to summarize the primary and practical matters referring to pharmacologically induced reduction of patient awareness to “obviate otherwise intractable symptoms of overwhelming distress and suffering that may afflict certain patients in the final stage of far advanced disease” (Fine, 2001). This study reviewed materials from the National Hospice and Palliative Care Organization Ethics Committee Task Force on Total Sedation. The study was able to reveal that most of the studies gathered revealed that prevalence of indications for total sedation varies at different points in time. The issue of sedation is a crucial issue which needs to be founded on ethical principles before it can be used on a patient. The nurse caring for the home-based patient may at various points of her practice encounter patients or families which request for patient sedation (Fine, 2001). Any decisions on this matter must be made after fully considering patient choices and the full ethical implications and ramifications of such choices. The nurse must also consider the fact that the home-based palliative care patient and his family may be physically, emotionally, or even mentally overwhelmed by their conditions. As nurses, the ethical tenets involved in the clinical management of deep sedation must be firmly based on relieving the “suffering at end of life” and not be based on any other personal or even professional considerations (Fine, 2001). A study by Halldórsdóttir and Hamrin (1997) sought to evaluate caring and uncaring encounters with nurses and with health care professionals from the cancer patients’ perspective. This study was phenomenological and covered a thematic analysis of interviews with five women and four women with cancer who were at one point in their lives been under home-based and palliative care. The basic structure of the caring encounter with the patient covered three aspects: the nurse perceived as caring, the resulting mutual trust and caring connection, and the perceived effect of the caring encounter (Halldórsdóttir & Hamrin, 1997). On the other hand, three aspects of a non-caring encounter emerged, and these are: the nurse perceived as uncaring (hindrance to healing); the resulting sense of mistrust; and the perceived effect of uncaring encounter which produces a sense of uneasiness and discouragement (Halldórsdóttir & Hamrin, 1997). The study revealed the importance of competence, genuine concern, openness, and willingness in caring for the patient. More often than not uncaring attitudes of nurses on palliative care patients produce devastating effects on the patients; and it also “raises the question whether uncaring as ethical and a professional problem should perhaps be dealt with as malpractice in nursing and health care” (Halldórsdóttir & Hamrin, 1997, p. 120). A caring attitude however is already within the ethical planes of nursing care in the form of the principle of justice. Justice, in its most basic sense is about giving a person his due. A dying patient is most certainly due the caring attitude from the nurse. The patient whether dying or not, is also entitled to what is just and fair from those who are legally mandated to render care (Fry & Johnstone, 2002). Ratner and Song (2003) had an opportunity to make their own analysis of the ethical issue surrounding end-of-life care in the home-based setting. In their paper they noted how death at home has become an increasingly common phenomenon. In the home care setting, there is always an ethical question hovering over the patient’s choices and the fact that health care givers allow them to make such decisions (Ratner & Song, 2003). The authors also point out that many home health agencies make ethical decisions to invest in either home-based care of hospice or other types of care. Nevertheless, this study by Ratner and Song (2003) revealed that home-based care is ethically challenged by the extent to which either the patient or his family members control the care, and that “home care providers face refusal of care, limited control over use of opioid analgesics, and suicide” in the process of caring for the patient in the home-based setting. Moreover, the patient is often within the care and supervision of his family members and these family members would likely make the choices or decisions for the patient without the latter’s consent or even his knowledge. The nurse or other attending medical health professionals still have the obligation of informing the patient about the decisions being made about his care. The ultimate decision and the right to informed consent still belong to the patient, not to his family. Consequently, despite family’s instructions to the contrary, the nurse must still avail of the patient’s informed consent before implementing or adapting interventions for the latter’s care. The ethical implications of elderly home-based care in Turkey were also assessed in a study by Dogan and Deger (2004). They noted that the elderly population has increased among the Turkish population and that 90% of them had chronic health problems. The needs of this health care population are not often given the attention that they require. In addition to this problem, the elderly population often does not wish to be hospitalized; they prefer to be cared for in their own homes (Dogan & Deger, 2004). In their study, the researchers studied four case histories and prepared a composite scenario with a questionnaire for the respondent elderly patients living in a certain area in Istanbul; the study sought to evaluate the patient’s expectations from the health care system as regards their care. The study revealed that most of the elderly preferred to be cared for in their homes and proper ethical approaches can still be applied in the home-based setting. The paper also revealed that the respondents still expected the delivery of health care services in their homes. This study implies that patients in the home-based setting opt for this type of care, not because they are refusing treatment, but more because they are seeking to be comfortable in the last days of their life (Dogan & Deger, 2004). It is the nurse’s duty to assist in the delivery of quality health care to these patients. The basic code of ethics for nurses is about non-maleficence and in first doing no harm. And for patients under long-term care, their need for beneficence is an important consideration in improving the outcome of their health. There are various strengths of this topic considering that the population of elderly individuals and patients who need palliative care have increased. Many of these patients have opted for home-based care because of the comforts that it brings. Studies presented above prove that patients seem to be less stressed in their home-setting. By knowing this, nurses can make the necessary adjustments in their care of palliative care patients, both in the home-health setting and the hospital setting. The same ethical problems seen in hospitals are also seen in the home-health setting. The same ethical principles find similar applications in the home-health setting as the standards of patient autonomy, beneficence, non-maleficence, and justice see various applications in the cases illustrated above. Conclusion Ethical issues in the home-based setting may be seen in areas involving quality of life, quality of care, sedation, informed consent, and patient autonomy. Various studies were able to show that it is important for nurses to apply and respect the ethical standards even in the home-based setting. Patient autonomy may be one of the more prominent issues in home-based health nursing because the patient is often living and is surrounded by family members who may want to participate or make their own decisions regarding the patient’s care. It is important for the nurse to uphold the ethical principles of patient autonomy, beneficence, non-maleficence, and justice when confronted with various ethical issues in the home-based care. The patient, in the last few days of his life still has rights that need to be protected by health care professionals. Works Cited Boillat, M., Gee, D., & Bellavance, F. (December 1997) Ethical conflicts in home care. Patient autonomy and physician advocacy. Canada Family Physician, volume 43, pp. 2136-2142 Chaturvedi, S. (2008) Ethical dilemmas in palliative care in traditional developing societies, with special reference to the Indian setting. Journal of Medical Ethics, volume 34, pp. 611-615 Dogan, H. & Deger, M. (2004) Nursing Care of Elderly People at Home and Ethical Implications: an experience from Istanbul. Nursing Ethics, volume 11, number 6, pp. 553-567 Fine, P. (July/August/September, 2001) Total Sedation in End-of-Life Care: Clinical Considerations. Journal of Hospice & Palliative Nursing, volume 3, number 3, pp. 81-87 Fry, S. & Johnstone, M. (2002) Ethics in nursing practice: a guide to ethical decision making. London: Blackwell Publishing Halldórsdóttir, S. & Hamrin, E. ( April 1997) Caring and uncaring encounters within nursing and health care from the cancer patients perspective. Cancer Nursing, volume 20, number 2, pp. 120-128 Moser, A., Houtepen, R., Widdershoven, G. (1 February 2007) Patient autonomy in nurse-led shared care: a review of theoretical and empirical literature. Journal of Advanced Nursing, volume 57, number 4, pp. 357-365 Ratner, E. & Song, J. (2003) Ethics and Dying at Home. Home Health Care Management & Practice, volume 15, number 2, pp. 123-125 Seymour, J., Witherspoon, R. & Gott, M. (2005) End-of-life care: promoting comfort, choice and well-being for older people. UK: The Policy Press Read More