Patients Autonomy in Deciding What to Do at the End-of-Life - Research Paper Example

Ethics and Law: Patient Autonomy in End of Life Care Decision Making Issues Outline of End of Life Care Advance Care Planning Paper Central Idea: The principle of autonomy surpasses all other issues in deciding on what to do at the end-of-life. This paper will focus on the ethic-legal issues and challenges faced by heath administrators in the end-of-life care decision making. I. Introduction A. Principle of autonomy B. Ethics and law C. Healthcare administrators II. Background to the Problem End-of-Life-Care Decision Making Issues Introduction More than often, health administrators who take care for people at the end of lives stages find decision made at such stage as the most challenging and personally rewarding aspects of primary care. Cavalieri (2001) points out that provision of good health care to patients who are under the siege of terminal diseases require physicians who have an intense understanding of the biomedical ethics and law especially at such point of end-of-life care. More significantly, the provision of an effective plan of advance care reassure patients of their sovereignty at the end of life even when they do not have the capacity to make rational independent decision. Nevertheless, when health administrators do not sufficiently understand the stipulated health legal and ethical principles, they face great difficulties on making unbiased decisions. More importantly, healthcare givers should focus on the principle of autonomy that surpasses all other codes in decision making of end-of-life issues (Cavalieri, 2001). Considerably, health administrators should observe high-level of good care to dying patients based on the sufficient knowledge of potential ethical dilemmas as they utilize the strategies and interventions as a way of avoiding conflict. Nonetheless, it is imperative for the physician to be more proactive and have good communication skills as they undertake decision making while keeping the patient central by respecting patient autonomy. This paper will focus on the ethic-legal issues and challenges faced by heath administrators in the end-of-life care decision making. Depending on individual organizations, health care personnel have to sign a code of ethics that will mandate them to observe high ethical standards in their career (American College of Healthcare Executives, 2009). This is an oath taken by the health administrators compelling them to certain ethical and legal standards as a way of ensuring that decisions made are in favor of the patient. For instance, the American College of Healthcare Executives describes all the ethical standards that healthcare executives need to observe. Some of the ethics emphasized in practice include—professional confidence that should be respected in giving patients healthy and safe work environment, identification of community’s healthcare needs that should be adhered to among other code of ethics. More noticeably, such decisions made at the end of life generate moral conflict and challenges, as health administrators focus on trying to keep up with the ethical and legal standards that govern decisions making even when they are well defined and widely accepted in the health sector (Stroud, 2002). Background to the Problem Advance care decision-making The current major problem that health administrators face is based on the law and ethics behind advance care decision making for the end of life care patients. This is because, advance care planning involves individuals are able to receive the healthcare they want at the end of their lives (Massachusetts Commission End of Life Care, 2012). As the end of life care, remains as a major ethical debate over the political spectrum there is a need to take into consideration the interest of patient’s good care. The recent introduction of the “advance care planning consultations” provision in the 2010 health reform bill was put aside. Sauler &, Siegel (2012) concurs that in the end-of-life period both the patient and health care practitioners are faced with many challenges and some of them may not know how to proceed. Thus, as the Agency for Healthcare Research and Quality (AHRQ, 2003) analysis state that awareness needs to be brought forward in advance care planning is critical in resolving some legal and ethical issues revolving around the end of life care, especially patient self-determination or autonomy with decision-making issues. Advance Directives More than often, advanced directives on end of life patients treatment ethics are found to greatly conflict as compared to the legal law. This is because the legal law finds no fault in a person making a decision end his/her life while the moral law finds it very unethical. Many of the ethical issues associated with decision making in end-of-life care call for the involvement of legal advocates, patient and the healthcare giver (Stroud, 2002). As written and verbal instructions known as advance directives, help ensure that the patient’s wishes are known and carried out, it allows for patients who wish to assign decision making powers to their surrogates when lose the capacity to do so (Massachusetts Commission of End of Life Care, 2012). According to the federal law, an advance care directive is: “A legal document by which a person tells his or her medical caregivers how he or she prefers to be treated for any likely terminal illness from which he or she cannot reasonably expect to recover. Advance directives include living wills and durable powers of attorney. Whereas the surrogate may be someone outside the family, most familiar with the patient’s previously held values. If a patient previously executed an advance directive, a copy should be provided in the chart with the name address, and phone number of the person entrusted with the decision-making powers (Fiesta, 1997).” Nonetheless, this paper will not feature on the different types of advance directives as it deliberates on the progressing problem with the directives because of lack of awareness. More significantly, less than fifty percent of severely terminally ill patient in the AHRQ analysis had an advance directive and about sixty-five to seventy-six percent physicians whose patients had advance directives were not aware that it existed(AHRQ, 2003). In addition, there has been a persistent problem with advance care directives presented based on unclear instructions with language, which is too general or nonspecific for the health administrator to understand (AHRQ, 2003). In 1991, the federal law, Patient Self Determination Act, was inaugurated to focus national attention on patient rights in decision-making and use of written advance directives (Teno, Branco, Philips, Hawes, Morris, & Fries, 1997). However, the implementation studies showed a modest increase in the documentation of patient wishes and advance directives that proved to be a disappointing decision tool (Sauler & Siegel, 2012). On the contrary, even with directives in place they were being lost in filing and transfers in healthcare settings (Department of Health and Human Services, 2008). Ethical concerns: moral agents, cultural sensitivity Despite the presence of state and federal legal principles guiding patient autonomy, healthcare providers are compelled legally and morally to acts of beneficence. People caring for patients suffering from a terminal illness is also exposed to the challenge of non-intentional induction of harm and beneficence through well doing. Even after following a healthcare organization’s code of ethics and consulting with the ethics committee in the presence of an advance directive, providers face ethical dilemmas due to lack of standards in advance care planning. Some patients, families, and clinicians will avoid mentioning death and advance care planning methods due to lack of comfort and communication (Department of Health and Human Services, 2008). Creating a growing ambiguity with procedural requirements, cost, confusing language, cultural insensitivity, and limited foreign language availability often limit advance care directive utility (Sauler & Siegel, 2012). In most cases, end of life care autonomous decision-making may present a dilemma especially in cross-cultures, where the idea of respecting patient choices may be foreign. These cases present a less frequent use of advance directives, in preference for family and group decision-making, based on the state of interfering with acts of patient autonomy, belief in aggressive life-prolonging treatments, and more. Directives tend to prolong existence rather than allow natural progression that may be an issue in many cultures. Such controversial situations pose ethical dilemmas revolving confidential communication and principle of integrity for professionals. Case Study: Terri Schiavo’s lose of power to communicate More noticeably, the best example to consider when doing a study on end-of-life care is Terri Schiavo’s case. Even though, the case may be tragic it provides important teachings in the fields of ethics, law and medicine. Noticeably, this case presents a critical analysis of the concept of a determined vegetative state. Terri, who was 26 years old in 1990, fell in one of her apartment’s hall, and she severely experienced hypoxia for some minutes. Perry, Churchill & Kirshner (2005) asserts that by the time of the accident, Terri had not written a living will and there after she was declared incompetent to do it. Her husband was chosen to be her legal representative, and he got no objection from Terri’s parents. Terri underwent plastic surgery in order to curb her swallowing problem, but months later Terri resurged to a persistent vegetative condition where her life was supported by a percutaneous endoscopic gastrostomy (PEG) tube. Perry, Churchill & Kirshner (2005) explains that, some years later with no improvement of the condition, Terri’s husband realized that his wife might never recover from this condition. He then concluded that his wife would never have wanted to live under such a condition. He immediately requested for the PEG tube withdrawal, however, this request triggered many controversies between him and her parents. The case was then presented to court, and at first, the court did not consider it. This is because, Terri had no power to communicate in that state thus, the court considered the claims untrue. Following numerous hearings and witness testimonies, the court took the request of Terri’s husband into consideration (Perry, Churchill & Kirshner, 2005). This move by the court brought along with many disagreements continued as the state of events persisted until her death in 2005 when the tube was completely withdrawn. Strategies and Recommendations to Address the Problem The most appropriate recommendation to the decision making process in the end-of-life healthcare provision is to making an advance healthcare plan. Espinosa et al. (2010) contend that this is where a physician or healthcare giver discusses issues in advance with his/her patient. As a result, this plays a very imperative legal role at the critical point when, the patient loses communication power. Therefore, understanding the biomedical legal and ethics that guide the end-of-life care is very important for frontline staff, providers, and healthcare administrators (Oberle & Hughes, 2001). Strategy to Promote Advance Care Planning- Advance Directives As a healthcare (HC) administrator, it is significant to have a structured discussion at end-of-life in combination of legal perspective. The Agency for Healthcare Research and Quality requires the physician and HC administrator to initiate a guided discussion with the patient based on goals of future care (Kass-Bartelmes, Babara & Hughes, 2003). Throughout the discussion, the physician and HC administrator should ask what is important to the patient when dying because end-of-life consists of diverse concerns (Department of Health and Human Services, 2008). For instance, are there specific medications they want or do not want, when dying will they prefer nursing home or hospital or home, option of pain management and hospice care, and present scenarios with end-of-life care depending on patient’s wish to treat or not treat. Therefore, patients should be adequately informed about the evidence-based medical knowledge of treatments and sustainment of life in various scenarios because understanding treatment options is critical. Thereafter, HC administrators should encourage patients to complete an advance directive based on the awareness of the preparation of legal tools such as advance care directives according to federal and state laws. In addition, patients should have information regarding directives on leaving the treatment decision up to family members or physicians by referring the patient to a social worker or clergy to sort out questions based on end-of-life and advance care planning (Kass-Bartelmes, Babara & Hughes, 2003). As a HC administrator, it is critical to ensure that the patient has information on life-sustaining treatments, and share their end-of-life wishes with loved ones besides informing the patient of legal prevalence to revoke the advance directive at any time. However, before making any changes to the advance directive or before instating one, patient’s competency proof has to documented, along with a witness signature (Fiesta 1997). If the patient is in favor without any pressure, start to prepare the advance care to plan documents, ie. advance directives to avoid confusion in the future. HC administrators should review and update the patient’s preferences on a regular basis, since patient’s state of mind will change with health state experience (Kass-Bartelmes, Babara & Hughes, 2003). Last, be ready for the application of patient’s desires to actual circumstances since difficulty arises due to problems with applying the directive due to ambiguity revolving individual time of death . Physicians may overrule certain preferences due to clinical appropriateness of life-sustaining treatment or lack of specificity of advance directive (Department of Health and Human Services, 2008). Providers are not obligated to abide by directives stating patient’s wishes because the patient’s choice can be override by assessment of patient competence (Tonelli & Misak, 2010). Strategy to Overcome Communication Barriers with Education and Awareness Currently, there are many barriers in advance care planning, especially with implementation of advance directives due to time constraints and ineffective communication. Particularly after advance directive is in place problems with vague language, proxy decision-making, and accessibility of the directive are commonly present. It is essential to have a strong organizational structure to ensure that a multi-component intervention is initiated in the organizations; for instance, the Respecting Choices intervention in Wisconsin incorporated several interventions such as: “Training and education for local advance directive educators, placement of advance directive educators to all healthcare organizations, standard policies and practices for documenting, maintain, and using advance directivesinto routine standard of care. The interventions resulted in 85 percent completion rate of advance directives by eligible patients, and about 98 percent of all end-of-life treatment cases matched patients’ wishes stated in advance directives (Department of Health and Human Services, 2008). Therefore, having tools and decision making models in place can help facilitate advance care planning process.” The HC administrator should ensure that social workers, case managers, lawyers, guardians, and care providers affiliated with the organization are all educated about end-of life care, advance care planning and documents, and decision-making policies (ACHE, 2009). As patients and families often avoid mentioning death or related planning, it is vital as it results in a misunderstanding of patients’ preferences. More so, the organization is aware of end-of life dilemmas, the state and federal laws, as some states note advance care directives on the driver’s license and some store directives in private entities besides adhering to regular review of organizational guidelines (ACHE, 2009). The HC administrator should support the development of resources and programs for patients and providers on end-of-life care. In addition, awareness of resources available to families and staff dealing with palliative care and hospice programs, social and spiritual well-being should be promoted. More so, patients should be assured of organizational limitations with specific end-of-life options through promotion of awareness on an ethical issue revolving end-of-life care, by promoting open discussions amongst the community, and ensure patient-centered care. Some common myths should be clarified to clear up and guide proper advance care planning, especially case management disputes regarding treatments choices and directives. It is a myth that one must use their states advance directive form and providers to abide by it while the forms are cumbersome and do not provide useful guidance. Thus, it is important that HC administrators educate staff about the communications approach of end-of-life planning. The communications approach in advance care planning is less legal than advance directives and focuses more on goals, values, spirituality, family matters, quality of life, and development of end-of-life care (Department of Health and Human Services, 2007). Even though the emphasize will be communication, appointment of a proxy/agent/ surrogate documented on a legal form is crucial. The HC administrator should help guide the appointment, documentation, and education of the proxy. The best way to attain patient’s wishes over time and engage their proxy, families, and more is to have effective communication plan in place since advance care planning is a developmental interactive process. Ethical Issues Recommendation: Ensuring patient autonomy with directives The HC administrator and their organization to ensure ethical end-of-life decision making should promote the patient’s self-determination. Patient autonomy has become the principle of medical ethics. Justice Cardozo in 1914, expressed the first legal statement regarding self-determination as every human being of adult years and sound mind has a right to determine what shall be done with his own body (Fiesta, 1997). Thereafter, the Patient Self-Determination Act passed in 1991, focused on requiring Medicare and Medicaid participating organizations to obtain advance directives for documentation of patient’s preferences and implement organizational policies regarding directives (Greco, Schulam, Lavizzo-Mourey, & Hansen-Flaschen, 1991). HC administrators should advocate for advance directives and organ/tissue donations, to attain patient autonomy as it advances self-determination and autonomy when patients lose their capacity to voice preference (Department of Health and Human Services, 2008). Recommendation: Guidance of Ethics Committee and Court determination When patients who have lost the capacity to make decisions and lack an appropriate surrogate, the legal guidelines for end-of-life care become less clear. Some states allow physicians to make decisions based on patient’s wishes expressed prior to loss of capacity. However, physician decisions have to be guided with a court appointed guardian or mandatory ethics committee review. The guidance of the ethics committee or court can help facilitate disagreements in treatments even with valid advance directives in place when patient is incompetent, and no clear surrogate is present. However, decision-making review has been taken over by the establishment of the ethics committee in opposed to court determination (Fiesta, 1997). When no existence of clear standards, the committee serves hospitals and physician with valuable resources and decision-making guidelines as they offer educational and advisory in function (AMA, 2012). Recommendation: Guidance of Code of Ethics The ethics committee of organizations uses the Code of Medical Ethics or Code of Ethics as guidance to base recommendations. The Code of Ethics serve as a standard of conduct for affiliates as it contains standards of ethic behavior for healthcare executives in their professional relationships. The medical profession has long subscribed to the body of ethical statements developed primarily for the benefit of the patient ( ACHE, 2009). As the HC administrator, one should ensure the Code of Ethics is upheld as professional activities are conducted with honesty, integrity, respect, fairness, and good faith (ACHE, 2009). Code of Ethics does not only mean being in the form with the moral conduct of profession integrity and confidentiality, but also complying with all the laws and regulations pertaining to end-of-life healthcare management. The HC administrator should ensure the implementation of the organization’s code of ethics and compliance, as a vital resource. Case study: Terri Schiavo’s no power to communicate Based on Terri’s case, she had not presented eligible dying wishes when she had the power to do so, as the controversies that surrounded her case could not have been experienced. Though Terri’s case seemed complicated, the fact remains that she had not presented eligible dying wishes by the time she lost her ability to communicate. It was wrong for her husband to present speculations suggesting that she could have opted for euthanasia . False claims in the end-of-life period may lead to wrong decision making and hence violating other people’s rights. The court should have maintained its first stand on the case, given that there was a clear indication that Terri had not presented her end-of-life wishes. Terri should have been left to die naturally no matter how long it took. By the court settling on the decision of withdrawing the PEG tube that supported Terri’s life, they might have violated her rights if that is not what she could have wished for in her end of life utmost good faith wish. Advance planning with a directive in place would have been very appropriate in this situation, where the principle of autonomy would have been honored when patient lost the capacity to make decisions. Summary and Conclusions In conclusion, care-providers, physicians and patients are faced with difficult problems in the end-of-life times. The dilemmas that face all these people have brought about controversies over a long period now. These dilemmas can however, be avoided through one critical process of attaining utmost good faith in decision making on behalf of the patient’s interest. Also, planning in the courses of action in advance is very important. The biomedical ethical principle of autonomy is the absolute guiding principle in this case however; the morality of a health administrator should not be compromised. Indeed, a health administrator or practitioner who assists one to commit suicide will compromise the relationship between a patient and physician which is supposed to be that of provision of extreme comfort and care. References ACHE . (2009). The American College of Healthcare Executives (ACHE) Congress on Healthcare Leadership. Retrieved from http://www.ihf-fih.org/en/IHF- Newsletters/Articles/May-2011/IHF-News/International-Relations-Activities/The-American- College-of-Healthcare-Executives-ACHE-Congress-on-Healthcare-Leadership on 2 May 2012 AHRQ. (2003). 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