The American population is very heterogeneous; in other words Americans are very diverse. American people come from all different backgrounds, cultures, philosophies, and religious or spiritual beliefs. It is this diversity which makes America unique, and some may even say the best place to live in the world. This country was built on the promises of life, liberty, independence, and most importantly freedom. But does that freedom find its limits when people are faced with death?
An ongoing debate surrounds the practice of physician-assisted suicide (PAS); the debate is whether or not to allow certain patients with terminal illnesses the option to choose when they die. This controversy broadly encompasses aspects of healthcare, economics, civil rights, ethics, and religious beliefs. It is fair to say that because this issue deals with illness, dying and death, many people are quick to make assumptions regarding PAS based on their personal beliefs even if they do not fully understand the rationality behind this issue. However, the option for a patient to choose when to die is a matter of personal freedom and liberty. Based on the promising data from over a decade's worth of experience with the Oregon Death with Dignity Act (ODDA), all U.S. states should enact similar policies that allow for the strategic authorization of physician-assisted suicide.
In November of 1998, The CBS television show 60 Minutes unknowingly aired the death of Thomas Youk to a national audience; the audience watched as Dr. Jack Kevorkian injected the man suffering from amyotrophic lateral sclerosis (ALS), more commonly known as Lou Gehrig's disease, with a lethal dose of medication and after a minute or so die. Despite the Youk families’ satisfaction with Dr. Kevorkian's assistance, he was arrested, tried, and convicted of manslaughter (Green 2). According to Howard Brody, the mistake that the aptly nicknamed ‘Dr. Death’ made was that what he had performed on video was not an assisted-suicide, it was a “mercy killing.” Youk's illness completely incapacitated him; he wanted Kevorkian's help because he was afraid that his own saliva would soon cause him to choke to death. ALS works by slowly shutting down the nervous and muscular systems of the body paralyzing the victim until their hearts stops beating (Green 1). Though the body becomes completely immobile, the mind is unaffected by the disease. Youk was unable to swallow, much less push a button to administer the lethal medication as were some one-hundred plus of Kevorkian's prior patients. Unfortunately, this is where the line between assisted-suicide and euthanasia are drawn (Brody). Assisted-suicide is when it is legal for a doctor to write a prescription for a lethal dose of medication, usually barbiturates, to terminal patients. The doctor cannot administer the drugs to the patient; the patient must willingly take the medication on his/her own (Westefeld et al. 161). Kevorkian’s methods were attention grabbing and unconventional to say the least, but many felt very strongly that what he was doing was dignified. Unfortunately his methods served as his dissolution. As mentioned by Howard Brody, "advocates for legalising assisted suicide in the United States had for many years had been putting as much distance between their movement and the activities of Jack Kevorkian".
American culture (that of a post-modern industrialized western nation), is for the large part a death-fearing culture. According to Deborah T. Gold, during the twentieth century life expectancy nearly doubled. “In 1900, death occurred throughout life … [and] families managed death and dying. Now, in the twenty-first century America is death-aversive.” As a culture, Americans turn their sick and dying over to institutions with professionals whom we pay to care for them. Even though death is more likely to occur later in life we are more afraid of death than ever before (235). When death and dying took place within the network of the family and home, adults were not able protect their children from the painful experiences of death as they do now. Children would have been better accustomed to death and dying, and therefore able to adequately deal with loss (237).
How Americans deal with death and dying is not the only thing that has changed over the last century. Diseases now progress much more slowly. Whereas people in the 1900s most frequently died of acute illnesses like tuberculosis and influenza--they are now more likely to die from things like heart disease and cancer. These changes are no doubt the result of industrialization and advances in medical technology like vaccines. However, the problem now is that the process of dying is much slower and often persists for extended periods of time (237).
After World War II the funeral industry began its exponential growth into a highly profitable business; large profits could be made from services like cremation, burial, grave-plots, and embalming. “Costs rose dramatically as new expectations emerged: the best coffin, the strongest vault, the prime cemetery plot” (237). Yet, despite the financial burdens of a funeral, families were more than happy to distance themselves from the experiences of being responsible for the care of the dead (237). “As death moved into the hands of healthcare professionals, individuals were no longer desensitized from direct contact with death. Ultimately, we have become ignorant about death, and ignorance breeds fear” (240).
“In the 1800s, 80% of people died at home”, while they were surrounded by family members (Gold, 237). By 2010, 80% of people died from chronic illnesses in healthcare facilities (Marchione). When people die in a hospital they are less likely to be in the company of family. This also relieves family members of witnessing suffering--which is the most prominent reason for being hospitalized. Most dying patients want to avoid severe pain. Hospitalization allows better access to pain relief and life-saving treatments (LSTs). It also allows families to demand that doctors "do everything" they can to relieve suffering; however, the use of LSTs and other medical technology usually extends the time it takes for a patient to die (Gold 238), and it is often done no matter what the cost is. "Americans increasingly are treated to death… trying last-ditch treatments that often buy only weeks of time and racking up bills that have made medical care a leading cause of bankruptcies" (Marchione). The ideal of a "good death" has become something people can aim to buy and medical facilities can promote and profit from. "The belief that patient death is a failure of the physician and medical system is patently false, yet the American public, to some degree, believes that, with enough technology and skill, American physicians can cure all medical ills" (Gold 243). As a culture, Americans long for miracles, and hope to be the one exception to dire statistics; they discourage surrendering, and revere people who go down fighting. While, what we should encourage is helping people to find acceptance and maybe even some peace with dying as it is an inescapable counterpart to living (Marchione). In other words, Americans place an indefinite amount of value on life with little thought as to what actually constitutes living. Palliative care is medical care or treatment that focuses on depressing the severity of pain or symptoms of disease and to relieve suffering at the end of life. The goal of palliative care is to improve quality of life by providing physical as well as spiritual comfort at the end of life. Also known as hospice care it is the only option for many patients deemed terminal. The use of sophisticated medical technology and LSTs in hospice care has not only increased the overall duration of death, but in doing so has increased the health care costs at the end of patients' lives. The rate of “hospitalizations during the last six-months of life are rising”, as of 2005 there were 1,441 hospitalizations per every 1,000 Medicare patients; while LSTs in the last few years of a patients life accounts for almost 35 percent of gross Medicare funds (Marchione). Less than ten years from now, the cost of artificial respiration alone is expected to "reach an inflation-adjusted cost of more than $64 billion" (Gold 238). It is also apparent that the more sophisticated medical technology becomes, the cost of dying and life-saving treatments (LSTs) also increases. When the cost of healthcare goes up, the bracket of people who have access to it goes down. The American people simply cannot assume that every dying patient will have the means to pay for costly end-of-life treatments. If the government is also unwilling or unable to provide medical coverage to everyone, that includes coverage of the costs of prolonging death or LST's, people need alternate options. The harsh reality is that healthcare costs will most certainly be a factor for many lower class families, and those families need other options to consider. While allowing PAS is by no means a financial remedy for anything, nor is it the decision most people will make; it could be the right option for a few patients-- if they so choose. Overall, it is apparent that more choices need to be made available for medical patients.
In the late 1960s, a lawyer named Luis Kutner proposed the idea that people write what he called "living wills." These documents would show an individual’s wishes regarding medical treatment in case of illness or injury that might leave him/her unable to make sound decisions. This issue did not gain widespread publicity until the case of Karen Ann Quinlan in 1976. While at a social gathering, Quinlan had mixed tranquilizers with alcohol; this caused her severe brain damage which put her into what is medically termed, a "persistent vegetative state" (Ditto and Koleva). Karen's parents did not want to keep her attached to the machines that kept her alive and they requested she be removed from them. Out of fear of any legal liabilities the hospital involved the courts who ultimately ruled in favor of Quinlan's parents. “The court granted her parents' request for removal of the respirator, finding that it [not doing so] infringed on Quinlan's right to privacy protected under the Constitution” (Ditto and Koleva). This court ruling was significant “because it concluded that not only did a competent person have a constitutionally protected right to refuse life-sustaining treatment" but that rule would still apply to those who don’t have the cognitive ability to exercise that right (Ditto and Koleva). Karen Quinlan's parents acted as a proxy, on her behalf, and she died shortly after.
After the similar death of 24 year-old Nancy Cruzan, the Supreme Court ruled that every citizen “has the right to refuse unwanted treatments for any reason, even if it hastens death” (Girsh). Because Cruzan did not have a “living will,” the state of Missouri challenged her parents' petition to remove her from life support. The state demanded “clear and convincing” evidence of Cruzan’s wishes (Ditto and Koleva). This case served as an example of the problems that having some kind of advance directive can help to alleviate. Court’s ultimately ruled in Cruzan’s favor. The controversy surrounding this case accelerated the issue of patient’s rights. In 1990 the Patient Self-Determination Act was passed. The act made it so that hospitals must familiarize patients of their rights to make medical decisions in advance, or to choose a person as a proxy (one who can make decisions on their behalf). It also allows patients the choice to accept or deny any medical care or LSTs, whether or not the decision accelerates dying. During the end of the twentieth century all fifty states passed similar laws (Ditto and Koleva). "Thanks to the laws allowing patients to refuse medical treatment and the growing availability of hospice care, we have more control over how we die. The changes happened because people demanded better care and more options at the end of life… but they still haven't gone far enough" (Girsh 2). Oregon passed the Death with Dignity Act (ODDA) in 1997. It was the first state to allow physician-assisted suicide to be an option for some. John S. Westefeld, Alissa Doobay, Jennifer Hill, Clare Humphreys, Riddhi Sandil, and Benjamin Tallman detailed that in 2009 the most common reasons for patients to request PAS "included a decreasing ability to participate in activities that made life enjoyable, loss of dignity, and loss of autonomy" (self-governance). They also explain the most frequent medical conditions which lead to PAS as being ALS, AIDS/HIV, and malignant neoplasms or cancer (161-2). Lack of proper pain management is another, less significant, reason some choose this option (Cohen 60).
The ODDA allows patients who have less than six months to live to request a lethal prescription be written for them. The criteria for patients to qualify are rigid and very specific. Patients must first qualify to request the prescription. In order to do this they must be a legal resident of the state of Oregon over 18 years old; they must also be considered competent to make healthcare decisions and have been diagnosed with a terminal illness expected to result in death in no more than six months. If patients qualify to ask for the prescription, they must make two verbal requests to their physician that are fifteen days apart from each other. Qualifying patients must also provide a written request that has been “signed in the presence of two witnesses” to their physician (Westefeld et al. 161-2). “At least one of the witnesses” is not to be be associated to the patient personally, or attached to the medical facility in which they are cared for (161-2). “The prescribing physician and a consulting physician must agree on the diagnosis” as well as the patients' mental status. All options available to the patient like hospice and pain management must be discussed with him/her. If at any time either doctor feels the patient could be impaired by psychological issues such as depression, they can send him/her for a psychological examination. It is vital that a trained physician be involved in this process so assurances can be made that procedures will be followed according to the law, as well as “to ensure the patient is making an informed decision” (162). As a further matter of regulation, it is necessary for the attending doctors to report all lethal prescriptions written under the Act to the Oregon Department of Human Services where after a 48 hour waiting period the prescription can finally be administered.
The statistical information and annual reports regarding the ODDA are made available to the public on the internet; this allows anyone to review the current statistics regarding Oregon’s experience with the law (161-2). Washington State was the second to pass its Death with Dignity act in 2009, making some slight revisions to the terms in the law. Montana followed as the third state to legalize PAS in 2010. It is becoming clear that laws allowing people the option to choose when they die will continue to gain support.
Many who oppose allowing PAS fear the situation could ultimately turn awry in many ways; some concerns are whether allowing PAS is ethical, whether these policies could be used to target certain groups at a social disadvantage like the disabled, or even that it could lead down the "slippery slope" to widespread euthanasia or genocide (Cohen 59). At the most extreme, some who oppose PAS have gone so far as comparing those laws to the policies of Nazi Germany. James Boehnlein points out Nazi policies that "medicalized" killing had some similarities to the ODDA. Regarding Nazi policies he wrote, "the authors of Nazi policy professionalized and medicalized the process, describing the doctor's legal responsibility in 'death assistance' of the incurably ill, the mentally ill, and the mentally retarded"(8). He points out that the Nazis too had a carefully planned and controlled process in which patient consent was required; and that Nazi policies also included doctors, lawyers, and psychiatrists (8). However, the weakness in this comparison was the fact that the Nazi policy left too much room in regards to who qualified as "mentally ill or retarded." They failed to define what constituted "mentally ill, "or "retarded" as well as in what condition an individual must be in. Both issues of which the Oregon law has clearly avoided, as the law only pertains to those with a terminal illness.
One must also consider the prominent ideology during the time of Nazi Germany; prejudice and racism were blatantly rampant. Blame for any problem was placed upon a person's supposed race or ethnic group and usually based on stereotypes. This is no longer the case. In America racism does still exist, but it is not always so obvious. However, there is enough common knowledge and scientific backing to stop any public policy that might unfairly target a social race or minority group in such a destructive manner. While this seems a genuine concern with any policy that allows euthanasia as a practice, this point does not apply to the current laws that simply allow a patient the right to ask for life-ending medication. Under the current U.S. laws euthanasia is strictly forbidden; it is illegal for a physician to feed or inject anyone with life ending medications. The patient must self-administer the lethal prescription and if he/she is unable to do so then he/she cannot qualify to request the prescription in the first place (Westefeld et al.161).
The disability-rights community has also expressed much concern in regards to PAS. In a personal account Dr. Roy Amundson and Gayle Taira of the University of Hawaii tell the stories of how they reversed their initial positions of accepting PAS to discrediting its morality. Both authors have faced severe and traumatic physical disability and in their experience came to realize that the fear of being disabled is the mechanism pushing in favor of PAS. They both offer unique insight to the experiences and trials of being a disabled person. In the U.S. disability is looked down upon, and often people thoughtlessly feel that they would "rather die than have someone else wipe their butt"(56). Information from the 2002 Annual Report from Oregon is used to back up their claims. They cite the top three reasons recipients request the lethal prescription are "losing autonomy, decreasing ability to participate in activities that make life enjoyable, and loss of bodily functions" (56). Granted these are all aspects that the authors and many other disabled persons face daily; this does not make the fear that PAS might target the physically disabled legitimate. The major difference in each situation is that while the authors are living with these same kinds of disabilities, they are, however, fully-functioning individuals and are not facing an inevitable death within less than six-months. PAS is not the problem they face- it is instead the common negative view of disability itself. This is a different matter altogether, one that might be remedied with time, education and compassion; it has no real relevance in whether or not individuals already facing death should be able to choose when to die.
The statistics from Oregon's Annual Report of the ODDA have not validated any of the concerns laid out by the opponents of these laws. "The strict guidelines and careful data sets have had a reassuring impact regarding this "social experiment"' (Cohen 59).The data from the experience with the ODDA has proven anything but what opponents had predicted. In the thirteen years since the law has been in practice a total of around 750 patients have requested the lethal prescription of barbiturates and only 525 patients actually took the medication. The data also shows that 97.9% of the recipients were white, 1.3% were Asian and other ethnic groups account for the other 0.8%. 77% were between the ages of 55-84 years, and over 68% were college educated. None of the recipients were only physically disabled, few were from minority groups and all of them were dying from terminal illnesses (Oregon State). This information alone further disproves any claim that PAS would become a way to rid the country of the poor or any other minority group.
There are many interpretations of the probable outcomes of allowing physician-assisted suicide; the problem is that, those interpretations cannot not be made based on our personal experience, biases, and opinions or they are assumptions. Americans come from so many backgrounds and each one of us will have our own unique experiences in life that will lead us to interpretations and opinions regarding public policies, and that is acceptable. What cannot be done, however, is making the assumption that those opinions will work for every individual in such a large and diverse community. The nice thing about having choices is that one does not have to take advantage of them unless he/she wants to.
There have not been many solutions offered to arguments over PAS. It is more of a all-or- nothing situation because it is a decision that gives people the right to make a choice, rather than a policy to enforce upon all citizens. Disallowing PAS altogether could force many terminal patients to endure prolonged suffering despite a rational wish to die peacefully. One solution offered up by opponents has been to make palliative care better. While this is a great suggestion and something those in the medical field should strive for, it is also something that could take a lot of time. Also, while many Americans tend to feel as though technology will always have an answer, it is not that simple. People cannot look to technology to solve every problem because there are underlying connotations to that kind of thinking, not to mention ridiculous costs. Undoubtedly, there will always be some medical cases where technology finds its limit and while work is done to bridge the gap between technological advances and physical afflictions we will need another alternative.
Allowing people the ability to choose when to die has proven to be successful in Oregon State; in some cases merely having the option has seemingly helped patients. In discussing the common reasons that patients in Oregon requested a lethal prescription, Michael Cohen makes the observation that a rather large (28%) number of patients, “actually receiving the prescription never take it” (60). He also suggests that this “appears to support the idea that patients want a measure of control over the process more than possessing an innate desire to die." In the past thirteen years that the ODDA has been enacted, it has simply not become the impending doom situation of copious unchecked suicides or murders in hospitals that so many early opponents anticipated. Instead, the ODDA has served the purpose it was intended to serve--allowing those facing imminent death to choose when to die, while whatever they define as their dignity is intact.
While physician-assisted suicide may not be the right choice for everyone, it can be a rational and even merciful option for some. We must realize that death is unavoidable, and no amount of money or technology can change that. We must learn to confront the experiences of death and dying, rather than to avoid it at all costs. What is often idealized as a “good death” simply does not exist, but with proper care, planning, and some courage we can confront dying and help people to do it well. Limiting patients’ choices goes against the promises of freedom, and liberty set forth by the Constitution. As quoted by Fay Girsh, poet Archibald MacLeish wrote, "‘Freedom is the right to choose: the right to create for yourself the alternative of choice. Without the possibility of choice and the exercise of choice, a man is not a man but a member, and instrument, a thing.’"
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