Autonomy is a fundamental right. Liberty interests of patients while coping with terminal illness, however, unlike autonomy, are protected under the Constitution as fundamental rights. Advancements in medicine are extending the average life expectancy for adults. The aging of the baby boomer generation is also contributing to the increase in the growing number of the elder population. As society ages, not only do individuals battle terminal illness, but they combat the unanticipated demands on their right to die with dignity.
The ability to choose the timing of one’s death is limited to a few states in America. Additionally, there are a few countries now allowing physician assisted suicide. Even with this option, a patient must exercise advanced planning. Death with dignity is an increasing concern for all members of society. Euthanasia is a term meaning good death in the Greek culture. It is “the actual practice of preparing oneself for a dignified death” (Kiraly, 2012, p.335).
Historically, several cultural beliefs favored euthanasia. Roman gladiators were encouraged to fight to their death with honor and dignity in Europe. While in Asia, samurai warriors fought to their death or committed seppuku, an act of suicide by one’s own sword. This type of suicide was honorable in the Japanese culture. Christianity took the opposing view and deemed euthanasia a sin. In accordance with Old Testament Judaism and Christianity, “the ‘certain’ death springs from sin, and it is nothing else than the payment, the punishment for sin. Thus it cannot possibly be anything that should be made better or easier” (Kiraly, 2012, p.336). The views of Hippocrates, a Greek physician, aligned with those of Christianity, and were instrumental in curtailing views on euthanasia.
He developed the Hippocratic Oath, still in practice today, regulating the medical behaviors towards death with dignity. Medical practitioners, serving as moral interpreters, help with avoiding the transgression of the euthanasia method towards societies’ view as a sin. Some philosophers interchange dignity with intrinsic worth. The principle that humans should not be used as a means to an end formulates certain moral laws. Most philosophers have rejected euthanasia based on the belief that it infringes on an individual’s autonomy. Philosopher, Immanuel Kant, asserts “it is morally impermissible to treat oneself without due respect, suicide is in all circumstances morally impermissible.
Human dignity…does not support the legalization of assisted suicide” (Gentzler, 2003, p. 463). Pain and suffering, however, are factors that alter the opinions of several great philosophers regarding human dignity and the justification for euthanasia. Plato was opposed to active euthanasia, but he agreed that those suffering should not undergo prolonged treatment to sustain their life. “Euthanasia is the pursuit of a course of action where death is the intended outcome: it is the ‘medical management’ of death” (Harmon & Sethi, 2011, p.356).
Euthanasia is organized into categories, voluntary active, voluntary passive, involuntary active, involuntary passive, non-voluntary. Individuals, with sufficient mental capacity to make their own end-of-life decisions, may request voluntary euthanasia. Individuals, lacking the mental capacity to make their own end-of-life decisions may succumb to involuntary euthanasia.
Non-voluntary euthanasia occurs when an individual is competent but their wishes are unknown. Active euthanasia is the direct cause of this action, such as a lethal dose of medication, while passive euthanasia is a result of withholding life-sustaining treatment. Some may argue the act of euthanasia allows individuals the ability to die with dignity in some cultures however; death by means of euthanasia is not dignified.
The Japanese medical and legal communities, “… distinguish euthanasia from death with dignity in that they regard euthanasia as the administration of lethal drugs and regard death with dignity as the withholding or withdrawing of life-prolonging treatment” (Otani, 2010, p.50). Although there is a distinction between euthanasia and death with dignity, the purpose of both is to end one’s unbearable pain and suffering.
The act of euthanasia has negative connotations that stem from a history of genocide. Nazi Germany is an illustrious example of this deed. Using cyanide gas, the Germans exterminated a large portion of the Jewish population. Contrary to popular opinion, genocide is not limited to the past. The atrocities of this practice resurfaced a multitude of times, such as in the civil war, in Rwanda, as well as the conflict in Darfur. Social conditions in all of these countries contributed towards conflict and crisis situations resulting in the onset of social control. Genocide, often viewed as a deviant action, is also a type of social control. The casualties of these wars were not permitted to die with their dignity.
Their deaths, indeed, did engender suffering. In these cases, the affected individuals experienced both active and non-voluntary euthanasia. History provides valuable lessons. Learning about the suffering of others affords us the opportunity to take action to prevent the possibility of reoccurrence. Karen Quinlan is an infamous case from the 1970’s. This woman was in a persistent vegetative state sustained by life-support. Her family petitioned the court to withdraw the ventilator machine, allowing her the right to die with dignity.
The judge granted the family’s request to allow Karen the opportunity to breathe on her own or die with dignity. Karen continued to live in a coma for ten additional years. She survived those years with the assistance of a gastric feeding tube. Karen’s tragedy brought awareness to the importance of documenting individual’s end-of-life wishes.
A health care directive is helpful in preventing the court system from making life and death decisions, such as in the case of Karen Quinlan. This document ensures a patient’s choices concerning life support are known—should they lapse into a coma. Executing a health care directive can be an example of voluntary passive euthanasia, while Karen Quinlan is an example of involuntary passive euthanasia. Jack Kevorkian provides a model for active voluntary euthanasia. Kevorkian assisted several people in the act of committing suicide.
His patients sought his help in ending their lives to avoid prolonging their existence in an undignified manner. The case that brought infamy to Kevorkian was that of Janet Adkins. Adkins suffered from Alzheimer’s disease, and while she was still competent, she sought to end her own life. Many believe that “…when confronted with diseases or injuries that are incurable, untreatable, or poorly managed, patients may seek release from their suffering” (Harmon & Sethi, 2011, p. 355).
Although through unconventional means, Janet Adkins’ family was “grateful someone was willing to listen to and help a beloved member of their family” (Stutsman, 2013, p.48). Media attention surrounding Jack Kevorkian, labeled Dr. Death, heightened awareness surrounding the rights of individual’s end-of-life decisions. Kevorkian challenged the ethical taboos surrounding assisted suicide. In doing so, however, he established a foundation for later decisions involving active euthanasia.
Euthanasia provides a means to extinguish one’s life when they recognize the declining quality of their existence. Individuals seek to embrace life in whatever philosophical, religious, secular, or theoretical belief system they maintain. Failing health or unexpected circumstances influence these ideologies in the pursuit of the good life. In trying times, families are willing to consider drastic options.
A terminally ill patient’s quality of life diminishes as their disease progresses. Family members do not wish to see their loved ones suffer with pain needlessly or persist in a vegetative coma for an undetermined amount of time. Allowing their loved ones to die, also relinquishes the families’ anguish of witnessing the lack of dignity. As the illness progresses, the body weakens and becomes frail. This “…frailty of the terminally ill [is] a reason why they need assistance in dying” (Durante, 2009, p. 28). Making the decision to end a family member’s life is not easy.
Recognizing the difference between living with dignity, existing in a coma, or enduring pain and suffering, however, assists with easing the burden of making such a choice. Since dignity is a highly subjective term, “it is difficult to formulate a clear-cut and generally applicable definition” (van Gennip et. al., 2013, p. 617). Terminally ill patients that present high anxiety symptoms would not necessarily be living in a dignified manner.
On the other hand, terminally ill patients with feelings of peace and acceptance of their death are living with dignity. The state of mind in which the terminally ill patient exists transcends into the family member’s acceptance that their loved one is experiencing dignity. Certain individuals conceptualize dignity as maintaining the basic qualities of their abilities. Their capacity to function, both physically and cognitively, must remain intact. Patients interpret the loss of bodily functions as the transition phase from life to death.
During an interview with an Alzheimer’s patient, a research study captured their view of dignity; “there is a little part of yourself, of your very own self, that has to keep functioning, otherwise…life would be…awful’’ (van Gennip, Pasman, Oosterveld-Vlug, Villems, & Onwuteaka-Philipsen, 2013, p. 1084). Social aspects of daily living are equally important when integrating perceptions of dignity into a definition. The inability to interact with family, friends, or members of society impedes the quality of life for normally adjusted individuals. Persons with silent symptoms often experience lack of dignity as others may ignore or accuse them of faking their disability.
For example, elderly individuals with early stages of dementia become isolated as social interactions with others prove to be challenging, especially with impatient people. Additional factors influencing dignity during the end stages of life include feelings of burden and the dependency on others for care. Terminal illness often requires professional oversight as the disease evolves. Medical staff routinely invades the privacy of an individual’s body with an assault of tubes and wires.
The simple pleasures of taking a walk or eating a meal require assistance, that is, if an individual is even able to accomplish these basic tasks. A regimen of medications is necessary to survive, sometimes with side effects more lethal than the disease itself. The administrations of these medications are often through tubes taped to the inevitable collapsing veins.
At this stage, palliative care is instrumental in maintaining the well-being of the patient. “Palliative care focuses on an individual’s comfort, relief of pain, control of symptoms, as well as psychological and spiritual support” (Nelson, 2013, p. 134). Palliative care is an extra layer of support provided by a team of doctors, nurses, social workers, clergy, and other specialists. The palliative care team provides guidance with difficult decisions as well as emotional support while the patient is undergoing medical treatment. This care is appropriate at any stage of a serious illness.
The goal of palliative care is to improve the quality of live for those nearing death. One of the objectives of this care is information gathering. Family members and the patients, if cognitively able, discuss matters of importance with the care team that will enhance the dignity of the terminally ill. Topics, such as the patient’s values and belief systems, are especially significant if conflict of viewpoints exists within the family structure. Hospitals must inform patients of any change in care as well as their rights to participate in treatment decisions and be able to complete a health care directive. Health care directives eliminate choices made by the family.
Providing full disclosure of information to the patients allows them to process their impending death. Approaching death with acceptance is key to dignity. The palliative care team works with patients to assist them in easing into this emotional phase. Being at peace and accepting the fate of one’s own death contributes to the quality of life.
A patient being “ …in a peaceful state of mind and ready to die,…accepting things as they are, not feeling anxious or depressed, and having the opportunity to say goodbye to loved ones all contribute to a death that [is] dignified…” (van Gennip et. al., 2013, p. 622). Death is certain. Dignity is not a guarantee due to the onset of conditions resulting in death. Society has recognized the need for assistance in this dilemma. Choices to end the indignity of suffering in pain or with cognitive impairments are now available.
Oregon was the first state to pass legislature allowing physician assisted suicide. Washington and, most recently, Vermont also permit this action. As previously discussed, Jack Kevorkian laid the foundation for the acceptance of active euthanasia in the United States. The Netherlands, Belgium, and Luxembourg have also legalized physician-assisted suicide. Strict regulations are in force for this process, requiring more than one physician counseling individuals seeking active euthanasia. Providing palliative care treatment may avert many people from choosing physician assisted suicide.
However, “a small percentage of dying patients will still experience suffering that can become intolerable and unacceptable, and a subset of those will want assistance helping death come earlier rather than later” (Quill, 2012, p.58). The legalization of physician-assisted suicide is slowly expanding across the United States. Vermont, as of May 2013, is now the third state allowing this act. Even though active euthanasia has been an option for the terminally ill for over a decade, the number of individuals choosing this method remains low. Individuals who choose assistance with dying find comfort in recognizing that they now have options in their life.
They are able to maintain a peaceful state of mind knowing they have the choice of when to end their pain and suffering. This decision is their final act of autonomy consistent with their personal values and beliefs. Having control over one’s life is essential, especially if the quality of life has diminished due to disease. Quality of life corresponds to pleasures such as love of family, friends, and security, while dignity in death corresponds to freedom from pain, suffering and debilitating disease. The end of suffering, whether it is the patient’s freedom from pain, or the family’s freedom from grief, is the ultimate goal in seeking dignity in death.
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