The Role that Autonomy Plays in Achieving a Good Death - Essay Example

DRAWING ON AT LEAST ONE EXAMPLE, EXPLORE THE ROLE THAT AUTONOMY PLAYS IN ACHIEVING A GOOD DEATH Date due: Introduction The idea of a ‘good death’ may at first seem like an oxymoron – how could anything good come out of dying? However, one only needs to observe someone else die badly to appreciate the fact that dying well is something that we all deserve, although achieving it may be surprisingly difficult. End of life decisions are a rarely discussed topic, even among clinicians, due to their complicated nature. These decisions, although important, present ethical dilemmas between prolonging a patient’s life and determining when the patient’s life has lost its worth. Most patients, under the guidance of a clinician, usually make their end of life decisions without any trouble and their wishes are granted. In other cases, the patient is usually too ill or unconscious to contribute to the decision, thus requiring their relatives to do so on their behalf. However, in both cases, the opinion of the patient is usually preferred, making this decision a very important one in a person’s life. With the current advances in medical technology today, most diseases that were considered hopeless and incurable a decade ago are now being managed successfully. Although this is a wonderful thing, it is also very important to acknowledge the fact that the quality of life of a patient should also be considered. As a result of the seemingly extraordinary power of technology, most doctors assume that the role of a clinician is to extend a patient’s life for as long as possible, by every mean necessary. Furthermore, this notion reinforces the natural human urge to ‘do something’ when faced with an insoluble fatal medical condition. As it turns out, most of the actions taken to extend a patient’s life at this stage only prolong their suffering and the dying process rather than prevent it. In the following sections, this essay will explore the role of autonomy in achieving a good death. Some of the advantages and shortcomings of adopting patient autonomy in the hospitals will be covered in comparison to medical paternalism, which is essentially the opposite of autonomy. In addition, the essay will look into the relationship between patient autonomy and the other three concepts of biomedical ethics as proposed by Beauchamp and Childress (2001). Finally, recommendations will be made based on the discussion of the role of patient autonomy in achieving a good death. Good Death According to the Institute of Medicine, a good death can be defined as “one that is free from avoidable death and suffering for patients, families and caregivers in general accordance with the patients’ and families’ wishes.” (Field & Cassel, 1997, p.24). In addition, the death should be reasonably consistent with the cultural, clinical and ethical standards. Other elements of death that have been added to the characteristics of a good death include, for instance, that it should come with a reasonable warning, and happen when one is in the company of his/her loved ones. A bad death is characterised by unnecessary suffering, disrespect of the patient’s or family’s wishes, and a sense among those involved or observers that decency was not achieved. In most cases, violence, neglect or unwanted and futile medical interventions are common in bad deaths. However, a universal definition of a good death remains elusive due to the high subjectivity associated with dying. For instance, some people would classify a good death as one which gives them the opportunity to reconcile with their loved ones, and attain certain peace or transcendence that is significant to them or their family and loved ones. On the other hand, other people may find sudden death preferable, regardless of the fact that they are denied the opportunity to say goodbye or settle legal and financial matters. The concept of a good death is further made complicated by the diverse cultures and beliefs. Although a universal definition of what should constitute a good death is desirable, it may pose potential risks to patients. For example, it may reflect the values of the dominant culture which are not shared by all. Physicians may also be tempted to impose these value on dying patients and their families. Nonetheless, a humane care system should ensure that the needs of the dying patients are met, even though they may vary from routine practices or ideals of care as defined by caregivers. Patients are likely to put their trust in such a system, as opposed to one which ignores their individual end of life values and beliefs. Scholarly Views of a Good Death The issue of good deaths has been explored by several authors for more than three decades. A wide variety of literature on the topic exists, providing insight into the various aspects of dying and end of life experience. For instance, Mary Bradbury (2000) loosely categorises death into three types: sacred good death, medicalised good death and natural good death (p.60). A good death in the context of religion focuses on the life of the individual and stresses on the reality of the afterlife. For a death to be regarded as a good death in these terms, the deceased is expected to have lived according to the ideals of the religion or they can decide to accept these values before they die. A medicalised death is the most common in society today. It usually involves some degree of medical intervention either in the hospital, in a hospice or at home under the care of a general medical practitioner. Generally, the dying patient is usually expected to be unconscious and free of pain. Emphasis is also placed on the caregivers of the deceased in determining whether a death is good or bad. A natural good death can occur in two forms. The first type is when the person has ample time to prepare for their death, and usually reject unnecessary medical interventions. The individuals usually become active in their deaths and may express their wishes such as their preferred place of burial. The second type of natural good death is usually sudden and saves the person the agony of having to go through a lengthy dying process. One important question to consider when defining a good death is whether the death is good to the deceased or the caregivers. In this respect, a good death, therefore, becomes dependent on the specific situation in which it occurred. Other scholars argue that the concept of a good death cannot exist, at least in the way that a good death is defined. Scarre (2012) argues that even though some deaths are worse than others, the criteria for judging a good death is inconsistent. He notes that one of the requirements of a good death is that the individual must be self-aware so that they can know what is happening to them. However, such a requirement is incompatible with another criterion that maintains the individual should possess tranquillity of mind. In addition, Scarre (2012) maintains that there is no such thing as a good death due to several reasons. For instance, he claims that the notion of a ‘good death’ is not practical since death is characterised by the loss of something valuable and irreplaceable. Other scholars claim that a good death is not necessarily linked to medical or scientific interventions. For example, David Schenck and Lori Roscoe (2009) claim that: while a “good death” is unlikely to be realized without access to pain management and good medical care, the tools that allow us to find meaning and purpose in old age and death are unlikely to be medical or scientific (p.62) The authors suggest that the patients should be advised to view the death experience as a final chapter in the ‘narrative’ of their life, rather than a tragic or traumatic incidence. Death should be a planned action or decision, not merely something that happens to us. In such a case, it is probable to influence the meaning of death, even though it may be impossible to control fully the circumstances. However, this concept of death has the shortcoming of idealisation. There is the optimistic expectation that the end of life experience can be made dignified and suitable for the patient regardless of the circumstances. In practice, such expectations are hardly achieved. Furthermore, certain people have got very complicated life experiences that it is difficult to construct a dignified end of life experience, no matter how creative carers are. Management of the end of life experience, therefore, may prove to be very difficult and highly patient-centred. The death experience of a 14-year-old boy described by Vince and Petros brings out the dilemma in achieving a good death, as defined in medical guidelines. The boy was admitted to the paediatric intensive care unit with acute on chronic respiratory failure. The treatment options available for him were lung transplantation, continuation of futile medical therapy or withdrawal of therapy. The first two were deemed unsuitable for the child, and it was agreed that the withdrawal of therapy was the best option. However, there was a disagreement whether it was right to wake the child and inform him of his terminal condition or just to withdraw therapy and let him die in his sleep. Eventually, the parents decided not to wake him up. Whether the death of this boy can be termed good or bad is relative. According to medical guidelines on end of life care, a good death is one where patient autonomy is respected, and the dying patient is given the chance to participate in their death. However, the parents of the boy differed with this definition of a good death and opted to make decisions on behalf of the boy. Their rationale was that it would not be right to wake him up just to tell him he was going to die. As seen in the case of this boy, a good death is highly patient specific, and a universal definition of a good death is not likely to exist. Patient Autonomy Patient autonomy has been a topic of discussion among health professionals for the past two decades. Not only is this concept talked about in terms of medical care, but also in other aspects of health such as bioethics and patient rights. Several definitions of patient autonomy have been proposed by various disciplines. However, they all agree that an autonomous patient is one who is capable of making independent decisions which they understand. Also, they should not be influenced by other external factors that may determine their actions (Stiggelbout et al., 2004, p.268). Patient autonomy has been claimed to be a fundamental requirement of a good death. Physicians are usually required to offer dying patients the opportunity to be actively involved in medical decisions regarding their end of life. Rodriguez-Osorio and Dominguez-Cherit (2008) acknowledge the fact that although the observance of patient autonomy is usually preferred by a majority of patients, others would prefer to leave the final decision to be made by the doctors. The families of patients also play a role in determining whether patient autonomy will be upheld or not. The resulting dilemma makes it difficult to determine whether respecting the patient’s autonomy is the best practice to adopt in the end of life matters. As seen in the case study of the 14-year-old boy, sometimes a good death may or may not be achieved through granting the patient a chance to dictate their end of life experience. Paternalism vs. Autonomy Paternalism is derived from the Latin word pater which means to act like a father or treat another as a child. In medical practice, paternalism describes a situation where the physician makes medical decisions, giving less priority to the patient’s wishes or requests. Most of the time, physicians find themselves faced with a dilemma where they are required to choose between respecting and fostering patient autonomy and their professional responsibility to act in the patient’s best interests. Depending on the perspective, paternalism may be desirable or not. Research has shown that not all patients prefer to make their end of life decisions, and culture has been shown to significantly influence these decisions. One study has shown that African-Americans and Korean-Americans prefer to have the decision made by their families or the physicians, while most Europeans will opt to have their dying wishes respected (Murray, Pollack, White & Lo, 2007, p.189). It is understandable for patients to rely on the physicians to make these decisions on their behalf. Most of them consider the physician more knowledgeable in medical matters. Thus it is easier to trust them with such responsibility. Furthermore, even though most patients would prefer to be actively involved in their end of life decisions, the physician’s counsel is usually preferred so that they can make an informed decision. As mentioned earlier in the essay, there is no universally accepted method of handling end of life decisions. Some patients may prefer to be actively engaged while others place this responsibility in the hands of the physicians. However, it is of importance that there is an agreement between the two parties (patient and physician) before any action is taken. Doctors have the responsibility to ensure that the patient is well informed so that they can make decisions that will not harm them. Furthermore, research has shown that patients prefer to be given information or asked their opinions regarding their end of life decisions. Even though the physician may end up making these decisions, it would be in the patient’s (and the physician’s) best interests to provide such vital information. Relationship between Patient Autonomy and Attainment of a Good Death The existing medical literature emphasises the importance of respecting a dying patient’s autonomy to give them a good death. Beauchamp and Childress (2001) outline four principles of bioethics that should be observed by physicians. These include respect for patient autonomy, non-maleficence, beneficence, and justice. Respect for Patient Autonomy This principle maintains that all physicians are required to respect the decision-making capacities of autonomous patients. The main duty of physicians is to ensure that they assist the patients to make reasoned, informed choices about the type of treatment they want or prescribed to them. Autonomy is not usually about settling for the most ‘correct’ decision from an objective point of view. Rather it entails respecting and giving consideration to the views expressed by the patient regarding their course of treatment. Gustafson (2007) gives the story of his mother who was admitted in hospital with pneumonia, developed congestive heart failure, and suffered from a heart attack and died in hospital. Prior to the heart attack, she was restrained so that she could be given treatment. In such a case, patient autonomy was not achieved. Most importantly, the family was not informed of the available treatment options for her. An autonomous decision is usually determined by the degree to which a patient has been informed, in a manner that he/she understands and can make a decision independently. However, in cases where the patient may not be capable of making their choice of treatment, the relatives or other caregivers of the patient may be consulted on the same. Beneficence The principle of beneficence maintains that the physician should engage in actions that benefit the patient. Although it is important in the health care system to ensure that the patient benefits the most from health care, this principle may clash with the principle of respect for patient autonomy. Cases may occur where the patient may choose medical procedures that may not benefit them, based on the opinion of the healthcare professional. Mostly, the short-term repercussions of the action may not be desirable to the patient, even though the long-term effect is beneficial. However, if the patient is competent, their wishes cannot be overridden even though they may not be in their best wishes. In the situation of Gustafson’s mother, what was beneficial for the patient, clearly, was not the kind of treatment that was given to her. Non-maleficence The principle maintains that health professionals should do no harm to the patient whatsoever. However, medical procedures usually result to ethical dilemmas, hence requiring collaboration between the team of health professionals and the relatives of the patient in deciding the best course of action. The treatment options available should be analysed critically, taking into consideration the patient’s wishes, after which the course of action with the least harm should be settled upon. Justice This principle asserts that all patients in similar situations should be treated in a similar manner. It entails fair distribution of benefits, risks and costs. In relation to patient autonomy, the health professional should consider if the wishes of the patient are likely to result to unfair treatment of other patients. Conclusion In summary, there is still a lot to be done regarding improving the end of life experience of patients. Physicians need to understand the different cultural and population preferences regarding patient autonomy. Thanks to the large volume of research on patient autonomy, adoption of the practice should not be problematic. However, it requires an interdisciplinary approach involving all the stakeholders of the health system.   Bibliography GUSTAFSON, D. H. (2007). A good death. Journal of medical Internet research, 9(1). FIELD, M. J., & CASSEL, C. K. (EDS.). (1997). Approaching death: improving care at the end of life. National Academies Press. MARY BRADBURY (2000) ‘The Good Death’. In DICKENSON, D., DICKENSON, D., JOHNSON, M., & KATZ, J. S. Death, dying and bereavement. London, SAGE MURRAY, E., POLLACK, L., WHITE, M., & LO, B. (2007). Clinical decision-making: Patients’ preferences and experiences. Patient education and counseling, 65(2), 189-196. RODRIGUEZ-OSORIO, C. A., & DOMINGUEZ-CHERIT, G. (2008). Medical decision making: paternalism versus patient-centered (autonomous) care. Current opinion in critical care, 14(6), 708-713. SCARRE, G. (2012). Can there be a good death?. Journal of evaluation in clinical practice, 18(5), 1082-1086. SCHENCK, D. P., & ROSCOE, L. A. (2009). In search of a good death. Journal of Medical Humanities, 30 (1), 61-72. Read More