Improve end-of-life care Essay

Advocacy to improve end-of-life care and decision-making for patients over the past twenty-five years has frequently turned to the law as a source of protection and procedural innovation. There has been a deliberate strategy to use the legal system to improve the outcome for patients at the end of life by means of courts of law and congressional hearings. Such efforts have resulted in the formation of legislation and regulation but have produced varying measures of gain as well as some serious limitations. As a result of these efforts a wide array of patients’ rights respecting end-of- life care have been established. These include the right to self-determination and to refuse unwanted life-prolonging interventions. Additionally there are regulations which have established decision-making processes and protocols should patients lose the ability to make decisions for themselves. The right to die is understood as the freedom to make a decision to end one’s life, on one’s own terms, as a result of the desire to allay painful effects of an incurable illness (Angus, 2004). The act of ending one’s life can take various forms, depending on the role the patient, their family and the physician plays in this process (Rosen, 1998). Euthanasia refers to the family member or physician intentionally ending the patient’s life by direct request from the patient. Euthanasia can be active or passive, voluntary or involuntary. In active euthanasia either a physician, a family member or another prescribed person, at the directive of the patient or an authorized representative, administers or withholds some form of procedure that leads to the eventual or immediate death of the patient. Passive euthanasia involves these agents withholding a procedure necessary for the patient’s continued survival. Active euthanasia involves administering either drugs or another treatment that will directly lead to death. Voluntary euthanasia is where the patient makes a direct request for either an active or passive procedure and involuntary euthanasia is when this decision is made by someone besides the patient because the patient is probably incapable of making such a decision. Assisted suicide refers to helping the patient end his or her life. There are numerous advocates and agencies throughout the United States, Canada, Europe and other countries, that either promote or oppose the right to die concept. One group advocates the establishment of clear limitations on the ability of healthcare providers or the state to impose undesired life-prolonging interventions against the wishes of the patient or the patient’s authorized surrogate decision-maker. The strength of this effort lies primarily in the articulation by these advocates of procedures for decision-making that respect patients’ autonomy and anticipate the range of circumstances in which patients would lack decision-making capacity and thus would require tough decisions about end-of-life care to be made for them (Johnson, 1998). In contrast to such articulation of ‘negative rights’, more recent advocates for dying patients have focused on using legal mechanisms such as courts of law and legislative processes to try to establish and articulate rights and responsibilities governing the role of the physician in a patient’s suicide. Instead of asking for patients to be free of unwanted interventions, these efforts have lobbied for legal support for positive assistance at the end-of-life. This assistance involves purposefully bringing an end to life through the use of medical interventions. To date, these efforts have met with mixed success. While physician-assisted suicide has been legalized in the Netherlands, achieving the same results in the United States has been challenging. Thus far only the state of Oregon has managed to make any headway in this regard. They managed to pass the ‘Death with Dignity Act’ which came into effect in 1997 (Public Agenda, 2006). This act gives patients a limited amount of legal right to physician-assisted suicide. Furthermore, the Supreme Court has determined that at this time, there is no constitutional violation if a state’s criminal laws prohibit assisted suicide. At a minimum, however, these efforts have succeeded in arousing public interest and inquiry into the suffering endured by patients and their families when serious or terminal illness becomes unbearably burdensome. This outcome may be more valuable than any articulation of a theoretical legal right. Another category of advocates targets the issue at the level of the health centers that provide care for these patients. They argue that the presence of so many discussions on the provision of suicide assistance is a reflection of the U. S. ’ failure to make proper palliative care readily accessible to those who are suffering. They believe that little has been done to ensure that all dying patients and their families receive competent, compassionate care at the end of life, regardless of the care setting or disease process. Such care does not simply involve being left alone or freedom from the use of machines. Efforts and successes in the legal arena have had more to do with decision protocols and processes, documents and directives, than with the substantive clinical aspects of quality care at the end of life. It is not sufficient to simple have a document that articulates a patient’s wish to refuse life-prolonging interventions. What this group advocates is ensuring that doctors effectively communicate with the patient and compassionately provide each with quality palliative care appropriate to their condition (Waters, 1999). There is a limit to the extent to which the law is turned to as a strategy for improving end-of-life care. While considerable time and effort has been spent over the past few decades ensuring, through the law, that certain things should not be done to patients at the end of life, there has been little focus on what should be done for such patients. In this regard the law has limited utility. The earliest and most enduring efforts involving the law in end-of-life care have focused on defining the limits of government intervention and interference, articulating individual freedoms, and creating processes and protocols to address areas of contention. There are precedents from judicial cases, including the cases of Karen Ann Quinlan in 1976 and Nancy Cruzan in 1990, that clearly establish the right of individual patients to refuse all undesired life-prolonging interventions as well as the clear establishment that the interests of third parties or governments cannot supersede individual rights to limit care at the end of life. Also there are legal guidelines and procedures that enable the treatment wishes of patients to be preserved and respected, even when the patients are no longer capable of articulating them. Finally there has been the creation of legal obligations and responsibilities on the part of care providers and care systems to inform patients of their options in this difficult decision-making process. In many ways, the law has been effectively employed to ensure patients’ liberty and privacy against the encroachments of modern medical technology as they approach the end of their lives. However, it is difficult to determine how successful the law has been in impacting positively the quality of care and decision-making provided to patients at the clinical level (Angus, 2004). Through legal principles and legislation, courts at both the state and federal levels have extensively considered the issue of end-of-life care and decision-making. They have consistently emphasized the right of patients to refuse any and all life-prolonging medical interventions, including ventilators, dialysis, surgery, and artificial nutrition and hydration. This protection is extended where patients are able to personally articulate their wishes or do so through authorized surrogate decision-making mechanisms. With respect to the cases that have thus far been examined through the courts, they have extended the fundamental legal right of patients to generally refuse treatment, providing clarity and creating decision paths in situations of uncertainty. The cases have not, however, completely eliminated debate and apprehension in the clinical arena, where moral ambivalence, medical uncertainty, religious convictions, emotional distress, and outright misunderstanding of the law still obscure the decision-making process in individual circumstances. The issue of ending a patient’s life is complex, no two cases being the same. There are significant implications for the patient involved, their family, physician and the facility providing care at this crucial time in their lives. For many clinicians, patients and their families, decisions about whether to withdraw a feeding tube or turn off a ventilator are still difficult. Such dilemmas cannot be addressed by the law, which can provide a process for decision-making but cannot necessarily guide the involved parties to the ‘right’ decision in a particular circumstance. The difficulty of end-of-life decisions are further compounded by evolving standards of care, continuing debate over what constitutes ‘futile’ care and confusion among clinicians, particularly about ‘what is legal’ (Angus, 2004). Evidently there are limits to what the law can clarify and make concrete when the issues are so complex and confounding. Another challenge has been the limited use of the many advance care-planning mechanisms that have been developed through both judicial and legislative processes. Additionally there has been limited advocacy by healthcare professionals for the use of these mechanisms. Mechanisms such as living wills and healthcare proxies or powers of attorney are intended to empower patients and their surrogates. Through the use of these, patients and their caregivers can consider the complex and problematic area of end-of-life care in a thoughtful and deliberate way, long before the chaos that often accompanies an acute, life-threatening event or the onset of serious illness ensue. While none of these mechanisms is perfect, if used properly and as prescribed in the law, such documents and advance planning could help avoid some of the crises that frequently accompany end-of-life care and decision-making (McDonald, 1999). A growing body of studies documents the myriad of problems and challenges that have surfaced in trying to implement advance care planning in the clinical setting. Some studies reveal physicians’ erroneous beliefs about advance directives and their lack of knowledge about how to employ them in clinical care routines. Other studies highlight the inadequacy of understanding between patients and their care providers about treatment preferences at the end of life, even when patients have previously executed an advance directive. Still other studies reflect that there is uncertainty in the clinical arena concerning who is responsible for initiating and helping to formulate advance care-planning decisions. Of course the variety of issues examined by studies are not exhausted as there still needs to be studies on strategies to increase the number of patients who execute advance directives prior to incapacity given that only a small percentage do so now. Also it remains unclear whether more directives will ultimately lead to better care that is more responsive to patient and family needs.