Honoring Patient Autonomy and End-of-Life Decision-Making - Thesis Example

Honoring Patient Autonomy and End-of-Life Decision-Making By Table of Contents Introduction 3 Definition of Patient Autonomy 4 Definition of the Problem 4 Goal of Patient Autonomy 5 Importance of Improving Patient Autonomy 6 Patient Autonomy and the Law 10 Conclusion 18 Works Cited 20 Introduction Patient autonomy refers to the practice of respecting a patient’s right to make decisions about the medical treatment he or she will or will not receive (Entwistle, Carter, Cribb, and McCaffery, 741). The concept of patient autonomy is founded on principles of self-determination, privacy, free will, responsibilities and rights, all a part of Western ideological perspectives (Norman, 36). From a legal perspective however, respect for patient authority is only effectively exercised if the patient is informed to the extent that he or she is in a position to weigh the benefits and detriments involved in receiving or refusing to receive a specific medical treatment (Delaney, 197). Thus respect of patient autonomy is based on the informed consent. It therefore follows that where a patient is competent to make a medical decision, it is unethical and unlawful to commence treatment without first informing the patient of the benefits and detriments of the treatment and allowing the patient to determine whether or not he or she wishes to receive the treatment (Harris, 11). In end-of-life situations however, it can be especially difficult for the patient to assess the possible outcomes associated with receiving or not receiving specific medical attention. At the same time, medical practitioners are also confronting conflicts between the duty to save lives and the duty to respect patient autonomy. Moreover, family members often intervene attempting to make the decision for a loved-one who is facing imminent death. This paper examines the literature and the law relative to patient autonomy with a view to identifying how medical practitioners should resolve these challenges and tensions in favour of respecting patient autonomy. Implications for practice and policies will be discussed with a view to strengthening the protection of patients’ right to autonomy. Definition of Patient Autonomy A narrow definition of patient autonomy describes the concept as the patient’s right to determine whether or not he or she will receive a certain recommended medical treatment or whether or not he or she will decline it. The liberal individualist interpretation defines patient autonomy as the patient’s right to “act intentionally, with understanding, and without controlling influences” (Stiggelbout, Molewijk, Otten, Timmermans, Bockel, and Kievit, 269). Thus the medical practitioner has a responsibility to help the patient understand the pros and cons of accepting or declining medical treatment. At the same time, discharging this responsibility requires that the medical practitioner avoid manipulating the patient and unduly influencing the decision. The common law established three elements of patient autonomy. The three elements are “voluntariness, capacity and information” (Dennehy and White, 40). This means that patient autonomy involves interrelations between medical practitioner and patient where the patient who has both the legal and mental competency is informed of the nature and consequences of medical treatment or refusal to receive the treatment and is permitted to make a decision without pressure. In this regard, patient autonomy is best understood as the patient’s “assent” in that the medical practitioner prescribes the treatment and may not administer unless the patient assents (Dennehy and White, 40). Definition of the Problem End-of-life patient care is a difficult time for medical health care practitioners, patients and their loved-ones. The difficulties include the tensions over the desire to end suffering and prolong life as well as the need to reduce medical expenses associated with end-of-life care (Hilden, Honkasalo, and Louhiala, 317). The Patient Self-Determination Act 1991 seeks to preserve and protect patient autonomy recognizing that patients at the end-of-life stage can deteriorate and in doing so become increasingly incapacitated. Thus the Patient Self-Determination Act 1991 imposes upon admitting hospitals and medical facilities the duty to inform patients upon admission not only of the right to make decisions about medical care, but to provide an advance health care directive. The obvious utility of the directive is to ensure that the patient continues to take charge of his or her care after he or she becomes incapacitated. The problem however, is that medical practitioners are technical and scientific experts and a patient regardless of how intelligent or educated may not fully understand a physician’s explanation of available medical treatment (Billings and Krakauer, 849). For the end-of-life patient where time is of the essence, it may not be reasonable to expect that the patient can understand highly technical and scientific information. It might also turn out that the patient does not want to make a decision and would rather the attending physician made medical decisions. The challenge for attending physicians is to determine how best to interact with the patient in a way that respects patient autonomy and at the same time takes account of the special circumstances and conditions surrounding the end-of-life patient. Goal of Patient Autonomy Patient autonomy is aimed at preserving the integrity of medical treatment and therefore its objectives are connected to medical ethics. Medical ethics assume that under ordinary conditions, legitimate medical treatment cannot occur if the doctor and the patient do not expressly agree on “what is going to happen” (Sneddon, 111). This is because, the legitimacy of medical treatment requires that the patient exercises autonomy over treatment options at some time, at the very least. Thus, patient autonomy functions to ensure that the medical profession satisfy the ethical standards associated with treating and healing patients (Sneddon, 111). In keeping with ethical standards of medical treatment, patient autonomy centres on honesty, respect and dignity, none of which can be accomplished in the absence of informed consent, the corner-stone of patient autonomy (Randall and Downie, 56). Thus, the goal of patient autonomy is to promote ethical standards through patient self-determination only after honest and frank disclosure of medical treatment options and possible outcomes. This is particularly important for end-of-life care patients where the quality of life is perhaps more important than futile attempts to save lives. In other words, a patient who is at the end of their lives need to know that further treatment is futile and other treatments are available for improving the quality of what is left of their lives. Importance of Improving Patient Autonomy It is generally accepted by medical health professionals that patient autonomy is important because it involves the patient, making and being impacted by a very important and quite often life-changing decision (Levy, 1). However, in order for the patient’s decision to be worthwhile and indicative of the importance of patient autonomy, the medical practitioner is required to assume a role that goes beyond a mere fact dispenser. The medical practitioner must use ‘evaluative judgment’ (Madder, 222). This means that the medical practitioner must use knowledge derived from research, clinical practice and experience and not only explain the patient’s options but provide an opinion of the possible outcomes for the patient in each case, (Madder, 223). Therefore a concerted effort is required for ensuring that patient autonomy is respected in a way that reflects the reality of the patient’s circumstances. For example, a patient who has been diagnosed with cancer has suddenly found that there is a conflict between a planned vacation and a scheduled chemotherapy treatment. Patient autonomy cannot be taken to mean that the patient is left to decide whether or not to forego treatment in favour of taking a planned vacation. The medical practitioner should inform that patient that in his or her considered opinion, the treatment is necessary and perhaps the patient should forego the vacation instead (Madder, 222). It would be up to the patient to decide whether or not the treatment should be put off, but only after the doctor makes an evaluative judgment. It is also important to improve patient autonomy procedures in the case of end-of-life patients who usually lose their capacity to give consent to a prescribed or recommended course of treatment for prolonging life, improving nutrition and hydration and for hospitalization (Dreyer, Forde, and Portvedt, 673). All too often, loved-ones who are left to make decisions for incompetent end-of-life patients are directed by emotions and costs and are not really focused on what the end-of-life patient would want. This makes it very difficult for medical practitioners who must reconcile ethical and legal responsibilities linked to patient autonomy with substitute decision-makers (Dreyer, et al., 673). At the end of the day, end-of-life patients’ consent is important because it can be assumed that rational human beings would not want to be subjected to futile and often invasive, life-prolonging treatment or given false hope of prolonging life. At the same time, the quality of life for end-of-life patients is an important aspect of the medical treatment decisions that are made. It is also important to consider patient autonomy in light of the fact that end-of-life patients might also make decisions out of a fear of burdening their loved-ones. Thus patient autonomy processes need to be improved to enhance patient-doctor relationships and to ensure that patients, particularly end-of-life patients have a more appreciative understanding of their right to self-determination (Winzelberg, Hanson, and Tulsky, 1047). Wright, Zhang, Ray, et al., (2008) also argue that patient autonomy can be compromised in end-of-life patients when medical practitioners are concerned that discussing death with the patient can inflict ‘psychological harm’ (1666). In a study conducted by Wright, et al., (2008), it was found that discussions when medical practitioners discussed death with a sample of end-of-life cancer patients, those patients pursued less aggressive medical interventions and were more comfortable with the idea of dying and thus had a better quality of life than patients with whom doctors did not discuss death with (Wright, et al., 2008). Thus in honoring and respecting patient autonomy, it is important that doctors avoid conflicts between concerns about psychological harm and realistic information upon which the end-of-life patient can make an informed decision. According to Siegel, approximately 20% of all deaths in the US occur after the patient is admitted to the intensive care unit (ICU) and frequently, those deaths are associated with decisions to ‘forego life support’ (181). ICU encounters a number of difficulties that could be avoided if patient autonomy and its underlying concept of informed consent were exercised consistently. For example, patients who have very little chance of benefitting from ICU care are admitted with the result that there is ‘needless suffering and wasted resources’ (Siegel, 181). Other problems encountered in the ICU is ‘inadequate treatment of pain and dyspnea’ and loved-ones often ‘develop psychiatric morbidity’ usually because of ‘conflict’ with doctors and ‘stress connected with end-of-life decision’ (Siegel, 181). All of these difficulties detract from the one thing that patient autonomy intends to accomplish for the end-of-life patient: to ‘meet patients’ wishes and needs by choosing appropriate treatments’ (Siegel, 181). The desire to meet patients’ wishes functions within the ethical parameters of patient autonomy which is characterized by the medical doctor’s obligations toward benefiting the patient’s health and safeguarding against maleficence and ensuring that resources are not wasted (Siegel, 181). Thus patient autonomy requires improvement to ensure that end-of-life patients are not subjected to false hope of recovery, futile treatment and to ensure that resources that can be used effectively on other patients are not wasted and to prevent or minimize pain and suffering. Hughes, Bakos, O’Mara and Kovner argue that improving patient autonomy is particularly important for end-of-life patients (196). End-of-life patients are generally presented with medical treatment decisions related to improving the quality of their lives. If patient autonomy is not fully respected, there is a danger that end-of-life patients will be subjected to forced treatment (Hughes, et al., 197). At the same time, patients vary, and some terminally ill patients will not want to be burdened with decisions about improving the quality of life or the quality of death. As a result, information provided to patients under the auspices of patient autonomy practices should be organized in a way that takes account of the patient’s capacity, preferences, needs and cultures (Mo, Shin, Woo, et al., 231). It would therefore appear that patient autonomy, especially with respect to end-of-life care patients requires improvements for a number of reasons. The most important reason is to ensure that patients obtain appropriate treatment and are in a position to anticipate realistic outcomes. While it is important for most patients to feel that they are in control of their lives, patients need to also know what their options really are. At the same time, emotions can interfere with both the patient’s and loved-one’s decision-making. Doctors and other medical health professionals need to ensure that accurate information is passed on to patients so that decisions are made that are realistic and resourceful. Patient Autonomy and the Law Ultimately, the regulating of patient autonomy is intended to ensure that a patient’s wish to decline specific treatment is respected. At the same time, medical health professionals do not want to be accused of malpractice when life-saving measures are withheld. This can give rise to conflicts between patients and their medical health care providers and between the latter and the patient’s loved ones (Carlet, Thijs, Antonelli, et al., 771). The legal position taken by the US is that the patient’s right to autonomy originates out of the need to defend the ‘interest in a person’s physical well-being or physical security’ (Karako-Eyal, 672). In this regard, patient autonomy is a legally guaranteed right in the US (Patient Self-Determination Act 1990). The Patient Self-Determination Act 1990 was passed by congress in response to the Nancy Cruzan case and was ‘intended to promote awareness and discussion of health-care issues” with respect to end-of-life decisions about health care (Koch, 240). Essentially, the 1990 Act imposes a federal obligation on medical health care facilities expecting to benefit from Medicare or Medicaid to ‘inform patients upon admission of state laws governing self-determination (Koch, 240). The Cruzan case involved a determination of whether or not the medical health facilities required ‘clear and convincing evidence’ of a patient’s wish to refuse life support or to be removed from life support (Cruzan v Director, Missouri Department of Health 1990). In 1983, Cruzan was involved in a traffic accident and went into a coma. After three weeks in a coma, Cruzan was diagnosed as being in a persistent vegetative state. Cruzan was fitted with a feeding tube in preparation for long-term care. Cruzan’s family wanted to remove the Cruzan from life support and the law of the State of Missouri insisted upon clear and convincing evidence. Thus the Missouri Department of Health’s policy required that life support could not be removed from a patient without clear and convincing evidence that it was consistent with the patient’s wishes (Cruzan v Director, Missouri Department of Health, 1990). The US Supreme Court ruled that the State of Missouri could insist on clear and convincing evidence of the patient’s wishes. The US Supreme Court ruled further that from a legal perspective, the due process clause and right to privacy are constitutional rights that conferred upon competent individuals the right to refuse medical treatment (Cruzan v Director, Missouri Department of Health, 1990). Thus the clear and convincing evidence alluded to in the Cruzan case is now legislated under the advance directive mechanism. Section 489.100 of the Patient Self-Determination Act defines advance directive as: …a written instruction, such as a living will or durable power of attorney for health care, recognizes under state law…relating to the provision of health care when the individual is incapacitated (Patient Self-Determination Act 1990, Section 489.100). Insisting upon clear and convincing proof of the patient’s wishes is difficult to legislate any other way as determining what a patient might have agree to or not agreed to when the patient is not able to communicate is a complex issue. Although one would expect that loved-ones would know what the incapacitated patient would have preferred, there are some obvious biases. For example, family members may be concerned about medical expenses and would therefore have a self-serving motive for the discontinuance of medical treatment or the withholding of medical treatment. On the other hand, family members may be too emotional and therefore reluctant to let go and might insist on medical treatment that the patient may have refused if the patient could articulate his or her preferences. A written advance directive would certainly resolve this dilemma for medical health providers. Section 489.102 requires that medical health providers ‘maintain written policies and procedures’ with respect to advance directives for all ‘adult individuals receiving medical care by or through the provider’ (Patient Self-Determination Act 1990, Section 489.102). Note that the directive is required to be in writing which provides an extra layer of protection for patients who are incapacitated. It would not be enough for a family member to state that the patient had verbally relayed his or her wishes to him or her. In addition, medical health providers are required to inform patients upon admission into care of the hospital written advance directive policies together with their right to determine whether or not they will receive treatment (Patient Self-Determination Act 1990, Section 489.102). In addition, if the patient does execute a written advance directive, the directive must be noted on the patient’s files. Medical health care providers are also required to train and educate staff on the institution’s advance directive policies and practices. Where a patient enters the health care facility incapacitated, the health care provider is obligated to inform family members of the hospital’s written advance directive policies (Patient Self-Determination Act, 1990, Section 489-102). The rationale for the requirement that family members be informed of the facility’s written advance directive policy when a patient is admitted incapacitated is arguably to avoid conflicts and ethical dilemmas of the kind experienced in the Cruzan case. Family members will not be expected to produce an advance written directive unless one exists, but they will be informed in advance that in the absence of a written advance directive, they will not be able to instruct the hospital to withhold medical treatment, especially life support. It is not altogether certain that the requirement that medical health care facilities only withhold or withdraw medical treatment in end-of-life patient care has been beneficial to families, patients and the medical profession. The case of Terri Schiavo is demonstrative of the problems that still exist with respect to patient autonomy in end-of-life care. Schiavo had a cardiac arrhythmia and cerebral cortical encephalopathy in 1990 and went into a persistent vegetative state. However, this diagnosis had not come until one year after Schiavo’s initial admission to the hospital. She was fitted with a feeding tube and was conscious with a fixed facial expression (Editorial, 1149). After several treatment options did not improve Schiavo’s condition her husband Michael Schiavo instructed medical doctors not to treat Schiavo for a urinary tract infection in 1993. By 1998, Michael Schiavo petitioned the court seeking to withdraw life prolonging treatment of Schiavo and the petition was opposed by Schiavo’s parents who argued that Terri was conscious and as a devout Catholic she would not want to have treatment discontinued. The life prolonging treatment in this case was a feeding tube since Schiavo could not swallow. Michael called several witnesses who testified that Terri would not want life-prolonging treatment. The court ruled in favour of Michael and a date was set for removing the feeding tube. In the meantime, Schiavo’s parents appealed. The case went back and forth between Schiavo’s parents and her husband until a final order was made in 2005 directing the removal of Schiavo’s feeding tube once and for all (Michael Schiavo, as Guardian of the person of Theresa Marie Schiavo, r v Jed Bush, Governor of the State of Florida and Charlie Crist, Attorney General of the State of Florida, 2005). The Schiavo case is very similar to the case of In re Quinlan (1976), the only difference was that in the Quinlan case the families were not divided over the issue of discontinuing treatment. Quinlan was also in a persistent vegetative state and her parents sought to remove a ventilator and preferred that their daughter die naturally. Lower courts had rejected Quinlan’s parents’ petition for removal of the ventilator. However, the Supreme Court of New Jersey felt otherwise (In re Quinlan 355 A.2d 647 NJ Supreme Court (1976). The similarities in Quinlan and Schiavo’s case indicate that despite the fact that one came after the Patient Self-Determination Act and the other predated it, indicate that the same problems with self-autonomy that persisted before the Patient Self-Determination Act continue well after the Act ws implemented. Even so, despite the absence of a legal obligation to protect patient autonomy with respect to end-of-life patients, patient autonomy was nevertheless protected in practice. However, the New Jersey Supreme Court ruled that there was a delicate balance between patient autonomy and euthanasia and thus patient autonomy should only be exercised after medical opinion was obtained indicating that the patient had no chance of recovering. Specifically, the New Jersey Supreme Court ruled: It is both possible and necessary for society to have laws and ethical standards which provide freedom for decisions, in accord with the expressed or implied intentions of the patient, to terminate or withhold extraordinary treatment in cases which are judged to be hopeless by competent medical authorities, without at the same time leaving an opening for euthanasia (In re Quinlan 355 A.2d 647 NJ Supreme Court, para. 33). It is clear that in end-of-life cases, patient autonomy would first require evaluative scientific judgment from medical practitioners. Once there is scientific proof that the patient has no chance of recovery, the patient’s preferences is the second point of reference with respect to the decision to withdraw or withhold medical treatment. All that the Patient Self-Determination Act 1990 seeks to accomplish is the existence of the patient’s express wishes in the event the patient is incapacitated. Where the patient’s wishes are not express, then the courts might be petitioned to rule on the patient’s implied wishes. Obviously, in the event an end-of-life patient in care has a written advanced directive, medical treatment would be made on the basis of the directive if the patient is otherwise unable to communicate his or her preference. If no directive exist and the patient is unable to communicate his or her preference, legal battles will occur if family members want to withdraw or deny medical treatment and medical practitioners do not. The only way to avoid these legal battles is to secure a written advanced directive. The Patient Self-Determination Act however is only directed at patients upon admission to medical facilities. Many patients such as Schiavo, Curzan and Quinlan enter medical facilities in an incapacitated state and never recover enough to benefit from the knowledge that they can provide a written advance directive for end-of-life medical treatment. It would appear that informing family members of the availability of the written advanced directive is not much a solution to this dilemma. Certainly, this might prepare the family to think about the consequences that might ensue in the event doctors take measures they do not agree with. However, the Patient Self-Determination Act is entirely silent on what it hopes to accomplish by requiring medical practitioners inform family members that the incapacitated patient has an option to execute a written advanced directive. Presumably, this should mean that in the absence of a written advanced directive, the medical staff would determine the appropriate medical treatment. Regardless, it appears that the written advanced directive is not catching on and as a result, legal battles will continue. For example, a study was conducted by Teno, Wenger, Phillips, et al., (1997) on how effective the written advance directive was for patients who were in hospital with serious illnesses. The purpose of the study was to determine the role of the written advanced directive in the decision to receive treatment. The study was conducted over a four year period through interviews with 9,105 patients, surrogates, and medical health practitioners. The four year period of the study was divided into two time periods: two years prior to the enactment of the Patient Self-Determination Act and two years after the passage of the act (Teno, et al., 500). The results of the study indicated that there was no significant difference between the behaviour of patients prior to the enactment of the Patient Self-determination Act. The study found that the availability of the written advance directive did not “substantially enhance physician-patient communication or decision-making about resuscitation. What appears to be getting in the way is a lack of practice organization and communication among and between medical health providers and patients (Teno, et al., 500). Another study wielded similar results. The study was conducted by Emanuel, Weinber, Gonin, Hummel and Emanuel and involved interviews with 579 patients, 258 of whom had been discharged from medical health facilities prior to the implementation of the 1990 Act and 321after. The results of the study indicated that the patients discharged from medical health facilities after the implementation of the Patient Self-Determination Act did not report greater communications with doctors or a greater use of written advance directives than patients who had been discharged from medical health facilities (Emanual, et al., 619). Given that the opportunity to prepare and use written advance directives do not appear to be having much of an impact on seriously ill patients and has not improved communications and practices with respect to involving patients in the decision-making process, it is even less likely that the availability of the written advance directive will impact perfectly healthy patients. It is rare for perfectly healthy and young adults to contemplate what kind of treatment they might receive or refuse to receive in the event they become incapacitated in an emergency situation and are in end-of-life care. As it is the three cases discussed in this research study involved young and healthy individuals. Neither of the parties appeared to have thought about death and medical treatment options as evidenced by the legal disputes that arose out of their silence on the matter. Thus divided family members and family members at odds with medical practitioners were left with only one recourse: petitioning the court for a declaration facilitating an implicit interpretation of what the patient preferred in terms of medical treatment options. The obvious flaw in the Patient Self-Determination Act 1990 is that it is not fit for purpose. The purpose of the 1990 Act is to ‘promote awareness and discussion of health-care issues in preparation for medical decisions at the end of life’ (Koch, 240). Since the 1990 Act merely directs attention to the written advance directive, it is unlikely to promote awareness and discussion relative to health risks. Moreover, the 1990 Act only contemplates informing patients of the right to complete a written advance directive upon admission to the facilities, it does not come to the attention of individuals who are admitted to medical health facilities incapacitated. It can be argued that individuals who are admitted to medical health facilities in an incapacitated state will benefit from a written advance directive far more than end-of-life patients who are competent and in the facilities. Competent patients are in a position to communicate their medical treatment decisions. Just as a directive is entered into the patient’s file, the patient’s communication of medical treatment decision can be entered into the file. The Patient Self-Determination Act’s requirement that medical health providers inform family members of the written advance directive when the patient is incapacitated, can have unintended, unpleasant consequences that might compromise patient autonomy. For example, family members, motivated by emotions and unwilling to let go, might fabricate written evidence of the incapacitated patient’s medical preferences. This is too great a risk to take when one considers that the purpose of promoting and protecting patient autonomy, particularly with respect to patients who in end-of-life care, is to ensure that patients are not subjected to forced treatment options. Conclusion Patient autonomy serves a number of important functions from the perspective of medical health providers, practitioners, loved ones and patients. If functions to spare medical health providers, practitioners and loved ones the difficulties that flow from forcing a treatment on an unwilling patient, particularly patients who are in end-of life care. For doctors, there are concerns about subjecting the patient to the discomfort of a forced medical procedure that might diminish the quality of life for the patient, doctors also have to be concerned that patients. In addition, doctors and medical staff also fact the possibility that a patient forced to subscribe to treatment, will likely not follow through and this will only make matters worse for the patient and waste valuable resources. From the perspective of loved ones, there are troublesome biases that render their role as substitute decision-makers entirely unreliable. When a loved one is at the end-of life, there are number of factors that distract family members from the more important issue: the quality of life of the patient who is dying. Family members are more likely to be either pre-occupied with saving the lives of their loved ones or they might be concerned about the expenses associated with prolonging life. From the perspective of the patient, there is the indignity associated with forced treatment. In addition, the end-of-life patient may make a decision to withdraw treatment or refuse to receive treatment due to concerns that they are a burden to their family members. Ideally, the exercise of patient autonomy should dispense with the underlying difficulties if handled sensitively. Just as the patient should be fully informed of the medical treatment and outcomes, the patient should be informed of the right to exercise free choice, free of manipulation and influence. Family members should also be informed of the significance of respecting patient autonomy. The Patient Determination Act 1990 does not address these gaps and potential for conflicts and should be amended to include more comprehensive education for all parties including patients and their potential surrogates. Works Cited Billings, J. Andrew and Krakauer, Eric, L. ‘On Patient Autonomy and Physician Responsibility in End-of-Life Care.’ Arch Intern Med (2011) 171(9), 849-853. 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