The most controversial right-to-die issue cente rs on th e concep t of a ssisted suicide and physician-assisted su icid e. Thousands of people help loved ones die around the world, but the majority of these occurrences are not reported. They take place quietly in the homes of the terminally ill as family members and friends take active steps to bring on the death of someone they love. Most assisted deaths, as a result, go undiscovered and are usually officially ruled as natural deaths.
Many doctors and nurses have also quietly practiced assisted suicide. In fact, a survey taken of nearly one thousand nurses showed that nearly 16 percent had helped hasten a death. A study done in 1988 by the Massachusetts Medical Society reported that a significant number of physicians across the United States had also received requests for assisted suicide. Approximately 6 percent had assisted in patients’ deaths. A San Francisco poll of local physicians found the percentage much higher: 53 percent of surveyed doctors reported that they had helped AIDS patients die by prescribing lethal doses of narcotics. These assisted suicides have also gone unreported for years.
Whether done openly or secretly, assisted suicide has been condemned by right-to-life groups for decades. Right-to-life advocates believe that life is sacred and should not be shortened in any circumstance. Arguments for and against assisted suicide abound. Right-to-die advocate Robert T. Hall elaborates on behalf of those who favor assisted suicide: “The most compelling argument in favor of physician-assisted suicide has always been the one based upon the fact that some conditions are so intolerable that the only relief is death.”43
Opponents of physician-assisted suicide counter that if assisted suicide were legalized, then many patients who were simply depressed or mentally unstable would take advantage of the law and commit suicide. Author Eric Marcus summarizes, “Assisted suicide is one of the most fraught emotional, political, and moral issues of our time.”44 Opinions vary from those who wholeheartedly support it to those who bitterly condemn it; there seems to be little middle ground.
The word suicide comes from the Latin words cida, meaning “to kill,” and sui, meaning “oneself.” In an assisted suicide, another person, whether a physician or a loved one, helps in the death of an individual. In a physician-assisted suicide, that person is a doctor, who either acts on the patient’s behalf or provides the means for a patient to kill him- or herself.
Theorists and right-to-die supporters contend that assisted suicide is far different from “ordinary” suicide. Writer Stephen
Jamison explains: “Suicide ends a life that could continue, and implies irrationality rooted in an identifiable mental condition that may be treatable with proper therapy and medications.”45 Assisted suicide is different in that it involves a rational decision to end a life of suffering.
Do No Harm
“Physicians have a fundamental obligation to do no harm. … Physician assisted suicide is fundamentally incompatible with the physician’s role as healer, would be difficult or impossible to control, and would pose serious societal risks.” —American Medical Association.
jama, “physician assisted suicide,” 1992, pp. 2,229–33.
Assisted suicide also involves consent. This kind of suicide has also been called rational suicide. Unlike irrational suicide that occurs in depression and other mental illnesses, rational suicide is a decision made by a terminally ill patient who is of sound mind. Two major themes are involved: the desire to avoid unnecessary suffering and the desire to exercise self-determination by making a rational decision to end one’s life. Many supporters of assisted suicide contend that suicidal thoughts are not always symptoms of depression and may instead be reflective of the hopelessness and suffering felt by many terminally ill patients.
Rational suicide involves those individuals with a terminal or debilitating illness who, in an effort to end their physical and mental suffering, ask a physician to prescribe a lethal dose of medication. They are not asking the doctor to end their lives, but to make the means available to them for doing so. Such patients might include those with terminal cancer; severe multiple sclerosis; AIDS; and end-stage lung, liver, or kidney disease. These diseases are all characterized by severe pain and the deterioration of bodily functions and mental capacities.
Opponents of assisted suicide are quick to respond. Right-to-life supporters argue that any self-inflicted death, with or without help, is an irrational act. They believe that life is sacred and should not be shortened, whatever the circumstances. Former Penn State University professor Robert A. Walker explains: “The people who support the ‘above all, sustain life’ position are not insensitive to the situations in which people might be in severe pain or losing their minds. … What they understand is that suffering is part of life and often brings family together.”46
Despite knowing that assisted suicide is against the law, countless people approach their physicians asking for an end to their suffering. In fact, the vast majority of people who seek an assisted suicide are those with terminal illnesses that are accompanied by severe pain and other suffering. Sylvia Diane Ledger, a registered nurse and lecturer at the Royal London Hospital in Great Britain, elaborates: “Ongoing, unrelieved suffering gives rise to loss of hope and despair. The patient whose symptoms have not/cannot be adequately controlled may ask for euthanasia or assisted suicide to escape their suffering and/or restore their dignity.”47 Her opinion is supported by thousands of hospice professionals who have heard such requests.
Many terminal illnesses are accompanied by increasing weakness that often keeps patients confined to bed. As a result, patients often do not have the physical ability to end their own lives. Thus, they must turn elsewhere. Writer Stephen Jamison summarizes: “You should not have to choose between pain and death. Until medicine can re-establish its promise, or indeed guarantee, a more gentle death . . . the dying will seek whatever alternatives are possible.”48
Most members of the various right-to-die societies strongly advocate assisted suicide. They firmly contend that each person should be able to die with dignity in a manner and time of their own choosing. Journalist Simonne Liberty opines:
I believe a person should be able to have the choice to die with dignity. Why force a person to continue on in pain and misery when there is no hope for recovery. That constitutes a form of cruel and unusual punishment. … No one should make a dying person suffer needlessly,
Joseph Francis Fletcher is acknowledged as the father of modern biomedical ethics and a champion of physician-assisted suicide. Editor Robert F. Weir elaborates: “No single individual championed the cause of physician-administered death more than Joseph Fletcher. … He defended the morality of euthanasia as an act of mercy for patients who have no reasonable hope of recovery and for whom narcotics cannot relieve pain.”
In 1954 Fletcher authored the book Morals and Medicine, the first non-Catholic treatment of medical ethics in the care of the terminally ill. His basic premise was that people should have a choice in all decisions, including the right to die.
Another book, Situational Ethics, was penned in 1966. In this book, Fletcher wrote: “We need to educate people to the idea that the quality of life is more important than mere length of life. Our cultural tradition holds that life has absolute value, but that is really not good enough anymore. Sometimes no life is better.”
Robert F. Weir, Physician-Assisted Suicide. Bloomington: Indiana University Press, 1997, p. 52.
Quoted in Answers.com, “Biography: Joseph Francis Fletcher.” www.answers.com/topic/joseph-fletcher.
for a prolonged period, if that person asks for a premature death to end the suffering sooner. It should be an individual’s personal choice.49
The issue of physician-assisted suicide was put to its sternest test with the rise to popularity of the “suicide doctor,” Jack Kevorkian. When people think about mercy killing or physician-assisted suicide, it is his name that immediately comes to most minds. Kevorkian has, in fact, admitted that he has helped over one hundred people die. Heavily publicized, he has been very vocal in his support of physician-assisted suicide. Writer Tamara L. Roleff summarizes Kevorkian’s importance: “Kevorkian changed assisted suicide from a little-discussed practice into a national issue argued in front of the United States Supreme Court.”50
A pathologist by training, Kevorkian became interested in the dying process while still a medical resident. After graduating
from medical school in 1952, Kevorkian developed an interest in prisoners on death row. After working in the prison system for a number of years, his belief that the current methods of execution, including hanging and the gas chamber, were barbaric led him to an interest in more humane forms of death, such as death by lethal injection. After spending time in the Netherlands, where euthanasia and assisted suicide were common, he returned to the United States intent on pursuing his interest in euthanasia. He wrote, “Back in Michigan and inspired by my visit to the Netherlands, I decided to take the risky step of assisting terminal patients in committing suicide.”51
After finding little support from oncologists (doctors who treat cancer), Kevorkian began work on a machine that would allow a patient to end his or her life in a merciful way. He called his machine the “Mercitron.” It delivered carbon monoxide, a lethal gas, to the patient via a mask, causing death within five to ten minutes. He later developed another machine, which was dubbed the “Thanatron,” or “death machine.” The combination of a sedative, muscle relaxer, and potassium chloride, a drug that paralyzes the heart muscles, would provide, he thought, a humane and merciful death for those suffering from terminal illness. Both machines had to be activated by the patient.
Honor the Request
“When terminally ill patients request assistance in dying because of their suffering, and their request meets commonly endorsed safeguards, their request should be honored.” —Eric J. Cassell, professor of public health at Cornell University.
quoted in euthanasia—procon.org, “is a physician ever obligated to help a patient die?” www.euthanasiaprocon.org/helpdie/html.
Unable to put his machine into practice because of controversy and lack of interest, Kevorkian appeared on national television on the Phil Donahue Show. This finally brought him the notoriety he sought. He soon had his first patient. Janet Adkins had been diagnosed with Alzheimer’s disease, an illness that gradually leads to mental deterioration and physical wasting. Not wanting to put herself or her family through the ordeal of the disease, Adkins contacted Kevorkian, who agreed to help her die. Adkins met with the doctor and proceeded with plans to end her life. She left a note exonerating Kevorkian of any blame: “I don’t choose to put my family or myself through the agony of this terrible disease.”52 Her death and that of a number of other people who contacted Kevorkian followed.
Not long after news of these deaths gained worldwide attention in 1991, the Michigan Medical Association and the state government took away Kevorkian’s medical license. Despite the lack of medical credentials, Kevorkian continued to help patients end their lives. Unable to obtain the necessary drugs for injection, he switched to the use of his carbon monoxide machine. Brought to trial on three different occasions on charges of assisting a suicide, Michigan juries repeatedly found him not guilty of any crime.
Despite the not guilty verdicts, the state of Michigan eventually passed a law that put a permanent ban on assisted suicide on September 1, 1998. Jack Kevorkian waited only two weeks after the law went into effect to test the legality of it.
In addition to Oregon, there are only three other places that openly and legally allow physicians to assist in the deaths of their patients: Switzerland, Belgium, and the Netherlands. Most of the attention, however, is focused on the Netherlands, where physician-assisted suicide has been commonly practiced for over thirty years but only recognized as legal in the last six.
The Dutch Voluntary Euthanasia Society was founded in the late 1970s and began advocating physician-assisted suicide. The organization quickly gained widespread public support. Not long thereafter, the Royal Dutch Society for the Promotion of Medicine set up guidelines for physician-assisted suicide. Under Dutch law, the doctor must be convinced the patient’s request is voluntary and well considered. The physician must also document that the patient is facing unrelenting suffering. After consultation with another physician, the original doctor can proceed with the assisted suicide.
It is estimated that nearly 20 percent of physicians in the Netherlands have helped patients end their suffering. In 1995, for instance, there were over one hundred thousand deaths in the country; thirty-six hundred of those were as a result of physician-assisted suicide or euthanasia, accounting for a small percentage of deaths in the Netherlands. Physicians primarily use injected barbiturates, or sedatives, to induce unconsciousness; this is followed by the use of a muscle relaxer to cause death.
Kevorkian’s downfall came in November 1998, not long after he appeared on CBS’s 60 Minutes. During the show, Kevorkian allowed the television crew to film the actual death of one of his patients, fifty-two-year-old Thomas Youk. Youk had Lou Geh-rig’s disease, a disease that renders the patient incapable of swallowing, moving, and breathing properly. Youk could not press the injector button, so Kevorkian did it for him. He told television viewers that this was the first time he, himself, had pushed the button for a patient.
Legalized Assisted Dying Ensures Quality Care
“Legal change with strict control would reduce the current problems of inappropriate aid-in-dying by physicians and significant others and ensure quality of care for the dying.” —Right-to-die supporter Stephen Jamison.
stephen jamison, final acts of love: families, friends, and assisted dying. new york: g.p. putnam’s sons, 1995, p. 250.
Kevorkian also readily admitted that he wanted prosecutors to charge him with a crime because he believed that, by winning in court, he could make assisted suicide legal. He got his wish—he was quickly charged by Michigan prosecutors with murder and brought to trial. A Michigan jury convicted the seventy-year-old physician of second-degree murder. Judge Jessica Cooper, in speaking to Kevorkian, stated: “You had the audacity to go on national television, show the world what you did, and dare the legal system to stop you. Well sir, consider yourself stopped.”53
The reaction to Kevorkian’s conviction was immediate. The American Medical Association condemned him, calling him “a self-admitted zealot killing another human being to advance his own interests and ego-driven urge to martyrdom.”54 Even some of the right-to-die organizations that had earlier supported Kevorkian’s work began to denounce the Michigan doctor.
Despite the widespread criticism of Kevorkian’s actions, Youk’s family continued to praise him, as did Mike Wallace, longtime CBS newsman and the man who interviewed Kevorkian during the Youk televised program. Wallace offered his opinion: “He’s a decent and compassionate man who tried to help people get out of the suffering of their lives. Kevorkian’s incarceration amounts to cruel and unusual punishment.”55
On April 13, 1999, Cooper sentenced Kevorkian to ten to twenty-five years in prison. He served eight years and was released on parole in June 2007. The terms of his release included his promise that he would not assist in anyone’s death. His attorney stated: “Dr. Kevorkian will follow all conditions of his parole. He pledges not to participate in any assisted end-of-life events, but he will resume his passionate advocacy for the legalization of physician-guided termination of life related to irreversible or incurable disease, pain, and suffering.”56
Kevorkian had developed his suicide machines to challenge the laws against assisted suicide by actively helping people to die. Concerned that Kevorkian’s blatant disregard of the law would have a negative impact on public opinion, other supporters
of assisted suicide distanced themselves from his controversial actions. Instead they chose to work within the law. Encouraged by public opinion polls that indicated over 60 percent of the population favored physician-assisted suicide, right-to-die groups in a number of states proposed legislation that would legalize assisted suicide.
While efforts failed in California and Washington, assisted suicide supporters were more successful in Oregon. In the early 1990s, concerned citizens formed Oregon Death with Dignity for the purpose of passing a law that would allow dying patients to make and control their own end-of-life decisions. Measure 16, the Oregon Death with Dignity Act, was placed before the voters in November 1994 and passed by a slim margin of 51 percent to 49 percent.
The new law was immediately challenged. On November 23, 1994, two weeks before it was to take effect, a suit was filed in U.S. District Court, delaying the law’s implementation. The main opposition to the law came from lawmakers and right-to-life organizations. The Oregon Death with Dignity organization successfully defended the law in multiple cases in both state and federal courts.
The Oregon legislature brought the issue before the voters again in 1997. Oregon voters supported the act by an even wider margin; 60 percent voted to retain the law. Physician-assisted suicide became a legal alternative for terminally ill patients in Oregon in late 1997. According to the Oregon Department of Human Resources, “The Death with Dignity Act allows terminally ill Oregon residents to obtain and use prescriptions from their physicians for self-administered, lethal medications.”57
The second passage of the law, however, did not end the legal or governmental challenges. In the late 1990s, Representative Henry J. Hyde, chair of the Judiciary Committee, attempted to overturn the act by introducing the Lethal Drug Abuse Prevention Act of 1998 to the U.S. House of Representatives. According to writer Philip King, “The purpose of the Act was to prohibit the dispensing or distribution of a controlled substance for the purpose of causing, or assisting in causing, the suicide of any individual.”58 Hearings on the bill were held in July 1998, but the act never reached the House of Representatives. Other efforts by the Senate also failed to overturn the Oregon Death with Dignity Act. The issue was put to rest in January 2006 when the U.S. Supreme Court upheld the act in Gonzales v. Oregon.
Between the implementation of the Oregon law in 1998 and the end of 2005, nearly 250 patients used the law to hasten their deaths. This figure averages out to about 1 of every 1,000 deaths in that state.
To use the Death with Dignity law, patients must be eighteen years of age or older, an Oregon resident, and have the ability to
communicate their own health care decisions. They must have a terminal illness with a life expectation of less than six months and must make the request in writing.
Proponents of the Oregon law claim that the Death with Dignity Act does not legalize euthanasia. Legislators tried to counter the fears of those who opposed assisted suicide by ensuring that physicians could not assist the patient other than by prescribing the medication. King summarizes: “One of the key elements under the Oregon statute that makes assisted suicide more acceptable to the public is the patient must take the medication without
help from a third party. This feature lessens the possibility of undue influence or other influences upon a person’s choice to end their life.”59 The law is also appealing to those with terminal illness because it enables such patients to die in the presence of their loved ones instead of in hospital isolation.
“From Bad to Good”
“Once killing is redefined from bad to good, the protective guidelines for assisted suicide . . . are also quickly redefined . . . as obstacles to overcome. Then they are attacked, ignored, reinterpreted, while potential violations go essentially uninvestigated—to the point where they eventually become irrelevant.” —Wesley Smith, consultant to the International Task Force on Euthanasia.
quoted in euthanasia—procon.org, “would legalizing voluntary euthanasia and assisted suicide create a slippery slope to involuntary euthanasia?” www.euthanasiaprocon.org/slipperyslope.html.
Thus, an Oregon physician can legally prescribe drugs to assist a terminally ill person to take his or her own life. Not all terminally ill patients take advantage of the law; many choose to die naturally without the aid of assisted suicide options. Also, there has not been any indication of abuse of the law. For example, no evidence has been brought forth to suggest that individuals who have nonterminal illnesses have been given life-ending prescriptions. Because of the compliance with the law, the majority of people in Oregon support the legislation. In nearby Washington, the supporters of assisted suicide continue to work toward its legalization. In the meantime, a Washington physician who assists someone to die would be guilty of a felony, punishable by five years in prison and a ten-thousand-dollar fine.
Right-to-die supporters used the success of Oregon’s Death with Dignity law to challenge further the legality of laws in other states that prohibited physician-assisted suicide. They based their arguments on the American Constitution’s guarantee of autonomy. Writer Charles F. McKhann elaborates, “Personal autonomy is the
Early Uses of Assisted Suicide
State courts have been inconsistent in their rulings on assisted suicide. Many courts have been lenient toward those who assist a loved one to die, especially in those cases where the loved one was suffering or in extreme pain. Other courts ruled more stringently against the accused. Each case has been handled separately; even those cases heard in the same state have met with different outcomes.
In 1935 a physician named Harold Blazer of Colorado was accused of murder when he used chloroform to end the life of his thirty-year-old daughter. His daughter, the size of a five-year-old child, had spinal meningitis and was suffering pain and other debilitating symptoms. He was arrested, charged, and then acquitted of all charges.
Acquitting such physicians was the rule for much of the twentieth century. Hermann N. Sanders of New Hampshire, for instance, assisted in the death of his terminally ill patient and was acquitted of all wrongdoing, as was Vincent Montemarano of Long Island, who injected a fatal dosage of drugs into a patient with incurable throat cancer. In the case of Sanders, 600 of the 650 residents of his hometown signed a petition of confidence in him that helped in his exoneration.
The courts were also lenient toward family members and friends who helped end the life of the terminally ill. Louis Greenfield used chloroform on his severely retarded son, who, while not terminally ill, was in a near vegetative state. Greenfield was acquitted, as was Carol Paight, who shot her terminally ill policeman father. Even John Stephens of Atlanta, after bashing his sixty-year-old aunt in the head to end her agony from terminal cancer, was acquitted.
There were exceptions, however, to this leniency. In 1986 Joseph Hassman of New Jersey was charged in the death of his eighty-year-old mother who had Alzheimer’s disease. He was found guilty, sentenced to two years probation, and fined ten thousand dollars. He also was ordered to do four hundred hours of community service. And in 1985 Roswell Gilbert, seventy-five, of Fort Lauderdale was sentenced to life in prison for shooting his wife, who had Alzheimer’s.
liberty to make decisions for oneself, free from outside influence and constraints, and the capacity to act upon those decisions.”60
For many years the supporters of physician-assisted suicide had argued that patients had the right to end their lives because of the Constitution’s guarantee of this liberty. Journalists Edd Doerr and M.L. Tina Stevens explain the reasoning behind this argument: “The right of a competent, terminally ill patient to end his or her life with the aid of a physician is one of the most important liberties protected by the due process clause of the Fourteenth Amendment.”61 The due process clause refers to the fact that the government must respect all of a person’s rights. Supporters of assisted suicide interpret this to include the right to die.
These rights to liberty, due process, and autonomy were first challenged in the mid-1960s in the case of Griswold v. Connecticut heard by the U.S. Supreme Court. The Court, in this case, ruled that states could not prohibit the use of contraception by
mature adults. Then came Roe v. Wade in 1973, in which the Supreme Court stated that a Texas law that made abortion a crime was unconstitutional. The Court used an individual’s autonomy and resulting right to privacy as the centerpiece in their arguments of both cases. Supporters of physician-assisted suicide used these arguments to assert that a patient’s right to privacy extended to include end-of-life decisions. Opponents, on the other hand, assert that these constitutional clauses do not give anyone the right to end his or her life through assisted suicide or any other means.
In the late 1990s the right-to-die organizations became involved in a court case that challenged the laws against assisted suicide. In the case of Compassion in Dying v. Washington, the group Compassion in Dying supported three terminally ill patients and their physicians in the state of Washington. They were challenging a Washington statute that made assisted suicide a criminal act. Group member James Browning contended, “We believe the cases . . . provide strong general support for our conclusion that a liberty interest in controlling the time and manner of one’s death is protected by the Due Process Clause of the 14th Amendment.”62
The Ninth Circuit Court of Appeals ruled in March 1996 for the patients and their physicians. In the decision Judge Stephen Reinhardt stated:
Recognition of any right creates the possibility of abuse. The slippery slope fears of Roe’s [Roe v Wade] opponents have, of course, not materialized. The legalization of abortion has not undermined our commitment to life generally; nor, as some predicted, has it led to widespread infanticide. Similarly there is no reason to believe that legalizing assisted suicide will lead to the horrific consequences its opponents suggest.63
The ruling in this case was later appealed to the U.S. Supreme Court and heard in 1997. It was paired with a similar case out of
the state of New York. After reviewing the two cases, the Court ruled that no such liberty to end life existed in the Constitution. The Court also found that Washington’s ban on physician-assisted suicide was legal. Chief Justice William Rehnquist wrote the opinion: “The history of the law’s treatment of assisted suicide in this country has been and continues to be one of the rejection of nearly all efforts to permit it. That being the case, our decisions lead us to conclude that the asserted right to assist in committing suicide is not a fundamental liberty protected by the Due Process Clause.”64
Despite the ruling, the Supreme Court justices gave the impression in their summations that it was generally supportive of a patient’s right to die. Chief Justice Rehnquist, writing for the Court, indicated that the Court hoped that an open debate about physician-assisted suicide would continue.
Rehnquist’s hope that the debate about assisted suicide would continue has been realized. The arguments surrounding the issue continue, often heatedly. The reason for the vehemence is that physician-assisted suicide is a very complex issue. Those who support and those who oppose legalizing assisted suicide have strong reasons for their beliefs and see little room for compromise.
The same kind of strong beliefs and the tendency to avoid compromise has extended to other forms of euthanasia. While assisted suicide is an active form of euthanasia, passive euthanasia has also drawn its share of proponents and opponents. The arguments over the refusal of treatment are nearly as heated as those involving assisted suicide.
Pain and Pain Management
Pain and Pain Management
In June 2001 a California jury awarded $1.5 million to the family of a terminally ill eighty-five-year-old man, finding the doctor liable for elder abuse and reckless negligence because he had failed to order appropriate pain medication. This court judgment brought the issue of pain control for the terminally ill into sharper focus. The thought of dying in pain can contribute to the desire for suicide or assisted suicide. Since the 1990s a movement has emerged to improve pain management and thereby reduce the anxiety of both patients and caregivers.
What Is Pain?
Pain has been characterized in a variety of ways. There are physical definitions such as an unpleasant sensation; a warning that something is wrong; or the body's response to a thermal, chemical, or mechanical injury. There are also definitions that attempt to provide a meaning or explanation. For example, pain is a punishment; it lets the body know it is alive; it is a teacher helping to modify future behavior; or it is "all in one's head."
Two definitions have become particularly influential among health care providers, educators, and researchers. The International Association for the Study of Pain (IASP) proposes that pain is an unpleasant sensory and emotional experience associated with actual or potential tissue damage. Margo McCaffery suggested as early as 1968 the widely accepted definition, "Pain is whatever the experiencing person says it is, existing whenever the experiencing person say it does" (McCaffery and Beebe 1989, p. 7). Both definitions point to the fact that pain is much more than tissue damage that triggers a response from the nervous system. The management of pain therefore involves more than treating the tissue injury. The individual's cultural background, present circumstances, and state of mind all require assessment and attention. It has become clear that cultural learning leads to differences in the way that people express pain. Furthermore, it is also becoming increasingly accepted among the medical community that, in contrast to previous medical beliefs, children feel pain even when they are too young to express it effectively. Elderly people may also have different, less obvious, ways of expressing pain, especially if affected by Alzheimer's disease. Health care providers are therefore improving their expertise in recognizing signs of pain across a broad span of patients.
How Does Pain Work?
Research about pain is still limited, but is going forward on many fronts. A major focus is the search for a molecular description of how a pain stimulus is signaled to the brain and how the brain signals its response. Until that process has been firmly identified, caregivers and researchers can utilize the following overview of pain pathways.
Cell damage occurs. Proteins trigger specific channels that set off the pain signal. As chemicals are released the area becomes inflamed and swollen. Identification of the specific pain channels may lead to the development of highly selective local anesthetics with reduced side effects for the rest of the body.
When the tissue damage threshold is reached, nerve fibers in the area carry a message to the spinal column. There are three types of nerve fibers, each of which has a distinctive role in producing pain sensations. Small, myelinated fibers known as A delta carry localized and sharp thermal and mechanical impulses to the neospinothalamic tract. The small, unmyelinated C fibers carry aching, throbbing, burning, dull, unlocalized messages to the paleospinothalamic tract and on to the brain stem and thalamus. A beta fibers, which are large and myelinated, serve to inhibit impulses from the A delta and C fibers, thereby modulating the number and intensity of impulses sent up the spinal tracts.
The physiologist Patrick Wall, one of the world's foremost authorities on pain, describes what happens in the dorsal horn of the spinal cord, "If the input message comes only from the large A beta fibers as a result of touch, the cell fires briefly and then is turned off. If, however, the input volley comes from tissue damage detection fibers, A delta and C, the cell fires more vigorously and exaggerates the output. During all this time, the brain is sending down control messages to amplify, diminish, or ignore the signal" (Wall 2000, p. 40). An example of this occurs when hitting one's shin on a sharp object. The immediate response is to reach down and rub the area. The rubbing message is carried by the A beta fibers closing the gate to messages from the A delta and C fibers.
Once in the spinal cord the messages cross to the opposite side of the spinal column. Next they travel upward through the spinothalamic tract, conveying information about the nature and location of the stimulus to the thalamus, cerebral cortex, and spinoreticular tract. This process activates autonomic and limbic (motivational-affective) responses in the brain stem and thalamus. Messages descend the spinal cord as a result of these responses.
It is in the brain stem and the cerebral cortex that the pain messages are analyzed. Here the body meets the mind. While little research is available, there are theories and some pieces of the puzzle to suggest what is happening.
Endorphins. Endorphins are important pieces of the puzzle. Scientists know something of the body's defenses against pain. Some neuropeptides, such as Substance P, appear to be pain specific transmitters. Other peptides, such as the endorphins and enkephalins, provide profound analgesic (pain-relieving) effects. Morphine and other opioid medications were in use long before the opioid receptor sites in neural tissue were discovered in the 1970s. The word endorphin was coined as a contraction to the terms endogenous (meaning "a natural property of the body") and morphine. Methods to turn on secretion of the endorphins have been studied. Massaging or moving a painful part may owe some of its effectiveness to stimulating endorphin production. The "runner's high," a good feeling as a result of exercise, has also been attributed to endorphin release.
Placebo response. Less well explained is the "placebo effect." This occurs when a treatment produces an effect primarily because of its intent rather than its specific therapeutic physical or chemical properties (e.g., taking a pill that actually contains no medicine). People sometimes report that they feel better even though they have had only the expectation and appearance of a treatment. The double-blind research technique that pits a new drug against an inactive substance has been developed to offset the placebo effect. The placebo would be expected to produce no effects. In actuality, however, placebo users frequently report positive effects. An important aspect of the placebo effect seems to be that the person trusts the person administering the treatment and believes that the treatment will be effective. The placebo effect can be a useful supplement to therapeutic treatment but its effectiveness differs markedly from person to person and is not entirely reliable.
Both the presence of endorphins and the well-documented placebo response point to the power of the mind-body connection in pain management.
Treatment of Pain in the Terminally Ill Person
Pain is the most common symptom experienced by hospice patients. The World Health Organization has estimated that more than two-thirds of patients in the advanced stages of cancer experience pain. Other studies confirm this estimate. Unrelieved pain leads to fatigue, nausea, and loss of appetite. Daily activities and sleep patterns are disrupted. The patient may experience depression and anxiety that damage relationships because loved ones do not know what to say or do.
Careful assessment of the patient's pain is the starting point for achieving adequate control. Patient and family understanding of the purpose and goals of assessment enhance communication with the health care provider. Patient communication starts with awareness of the location, quality, and intensity of the pain. "Stabbing," "throbbing," "burning," or "cramping" help identify the quality of the pain. Choosing words carefully can help the health care provider understand the pain and monitor changes in the quality over time.
The intensity of pain is often monitored through the use of a pain scale, typically asking the patient to choose a number from one (no pain) to ten (worst pain). The Waley/Baker Faces Rating scale, depicting five faces (from smiling to frowning with tears) assists children and some adults to indicate pain intensity. Health care providers also ask about the factors that precipitate or aggravate the pain. Patients are asked to identify any ways they may have discovered to control the pain and how they carry on with their activities of daily living.
Understanding the meaning of pain can be elusive for both the patient and his or her family and the health care provider. The patient's background, beliefs, and values can affect how the pain is interpreted and consequently the expectations for pain control. For example, some children have been raised to bear scrapes and injuries without tears and sobs, and some have learned to keep their vulnerabilities to themselves when in the company of strangers. Still others have been taught that suffering is a test of spiritual strength, therefore it is a moral weakness to admit to pain. People with such backgrounds may inhibit their expressions of pain even during a terminal illness. It is then up to the caregivers to detect signs of suffering and provide relief without challenging the patient's intention to appear in control of herself.
Thorough assessment of the many factors of pain is essential when selecting appropriate treatment. The patient and health care provider form an active collaboration. Confidence that the health care provider understands the patient and that the pain will be managed is a crucial first step to achieving control. The partnership with the health care provider is even more important when the patient is facing the end of life. Pain, with no prospect of relief, leads to profound hopelessness in many patients.
Techniques to Control Pain
Often patients and family assume that new and increasing pain must be expected. In actuality, a search for cause should be conducted at the earliest possible time. Identifying potential causes of pain can lead to effective prevention and control. The same approach should also be used with regard to other symptoms, such as constipation, pressure ulcers, and respiratory difficulties. These symptoms can often be prevented with attentive care.
Regular comfort measures deserve constant attention. As energy for activities of daily living and self-care wanes near the end of life, it is not uncommon for the patient to omit regular movement, mouth care, and basic physical cleanliness. Assistance with passive exercises, bathing, tooth brushing, and hair care may not seem like pain control, but in actuality these details can play a big part in maintaining comfort. A warm shower, if possible, provides dermal stimulation, relaxation of muscles, and a decrease in anxiety because it is such a routine part of life.
Use of Noninvasive Pain Control Measures
The first methods of pain control probably included stimulation of the skin with heat, cold, massage, and vibration, all of which have the ability to relieve pain without causing injury, at a low cost, and with little experience. Other types of stimulation of the skin include massage with mentholbased lotions, transcutaneous electrical nerve stimulation (an electrical current administered through skin patches), and acupressure (gentle pressure applied to acupuncture points).
Rubbing a bumped shin or applying a cool cloth to a forehead works to relieve discomfort. A parent's kiss to make everything "all better" helps a child through a painful experience. It reminds the individual that the presence of a loved one has a role in relieving pain.
Assisting the patient to focus attention on stimuli other than pain is another effective noninvasive pain control measure. Because the pain stimulus does not go away, but instead becomes "more bearable," this strategy has the advantage of being under the patient's control. It is also inexpensive. Many patients use the distraction strategy without realizing it by watching television, reading, doing crossword puzzles, listening to music, or attending to the company of friends and relatives. Meditation and guided visual imagery are also in this group of therapies. A disadvantage is that the existence of the pain may be doubted by others if the patient can be distracted. Distraction requires concentration and may drain the energy resources of the patient, perhaps leading to increased fatigue and irritability. The method is particularly effective for brief painful episodes.
Freedom from skeletal muscle tension and anxiety produces the relaxation response, characterized by specific physiological responses (decreased oxygen consumption, decreased respiratory rate, decreased heart rate, decreased muscle tension, normal blood pressure, and increased alpha brain waves) and a lowering of the subjective sense of distress. Conscious attempts can be made to interrupt the cycle of pain that leads to anxiety and muscle tension with increased pain as a result. The relaxation response requires active patient involvement. Many patients need specific instruction to invoke the relaxation response effectively. Some techniques include deep breathing exercises, jaw relaxation, review of peaceful past experiences, and a meditative or progressive relaxation script or tape.
Use of medication. While the noninvasive therapies are useful for mild pain, they should be considered supplements to the effective management of moderate to severe pain. Moderate to severe pain are often treated with medication and invasive pain control measures.
The World Health Organization developed the "analgesic ladder" to illustrate a systematic plan for the use of pain medication. Mild pain is treated with medications such as aspirin, acetominophen, and non-steroidal anti-inflammatory drugs (NSAIDs). Maximum recommended doses of these drugs restrict amounts in order to prevent toxicity and damage to the liver and kidneys. As pain increases, opioids such as oxycodone may be used. Severe pain requires morphine or other long-acting opioids. The dose is matched to the pain level. Although there are side effects to these drugs, the amount of drug is not limited. If pain level increases, the route by which the medication is given may change from the slower acting oral route to a faster route, whether transdermal, transmucosal, or intravenous. It is important to avoid routes that actually cause pain, such as intramuscular injection.
For continuous pain, medical practitioners often maintain that continuous pain medication should be available. This requires drugs that are long acting and given on a continuous schedule. The goal is to keep pain in check, rather than waiting until it is out of control before administering more medication.
Side effects of the drugs should be anticipated and prevented. The most common and preventable side effect of the opioids is constipation. Prevention includes adequate fluid and fiber intake and the possible use of stool softeners and laxatives.
It is important to remember that withstanding pain uses energy. When pain is first adequately relieved with medication, the patient may sleep for an extended period of time. This sleeping does not indicate that too much medication is being taken, it means that the person's body is recuperating and regaining energy. This sleepiness can lead family and caregivers to fear that the disease is progressing or that too much medication is being given. If the person arouses easily, then it is an indication that he or she is not taking too much medication.
Invasive Pain Relief Strategies
Some approaches to pain relief are called invasive because tissue damage may be caused by the procedure itself. The procedure may involve stimulation of nerves, the spinal cord, or areas of the brain. Blocking the nerves with medication or by actually cutting the nerve may reduce pain. These approaches may be useful if the patient is not able to withstand extensive surgical procedures. Acupuncture is considered an invasive approach to pain because the needles enter the skin. It is unknown whether acupuncture analgesia is superior to placebo analgesia or other types of hyperstimulation procedures.
The fear of unrelieved pain raises anxiety for terminally ill patients and their families. Many caregivers remember instances when they felt helpless in the face of pain. Giving the patient information about pain leads to better pain control and lowered anxiety. The confidence that pain will remain in control and the continued presence of the health care provider can go a long way to assure that pain will not be an issue at the end of life.
The patient plays a significant role in providing information about the pain and in selecting and using diverse pain control methods. The patient is the best judge of the adequacy of control. Caregivers may hear statements such as the following that express personal preference:
- • "It is okay if I only have pain when I move."
- • "I want to continue to be up and walking, so I will need more medication."
- • "A warm shower, meditation, and pain medication at bedtime helps me get a good night's sleep."
- • "I just want to have no pain. I don't care if all I do is sleep."
The adequacy of pain control can be judged by the patient's feeling of comfort and ability to participate in activities of daily living. The goal of complete freedom from pain may not be achievable.
Fear of addiction is often an issue with pain control, especially when opioids are used. Psychological dependence is a pattern of compulsive drug use characterized by a continued craving for an opioid and the need to use the opioid for effects other than pain relief. Addiction resulting from medical treatment regimen is extremely rare. On the other hand, the need to increase doses over time is not uncommon because of tolerance for the drug or changes in the disease process. Other drugs may be added to the regime. Medical practitioners cite the importance of not abruptly stopping the medications.
Health care providers themselves may be a barrier. It is important to seek out providers who believe the pain is real, who are willing to provide diverse approaches to the pain, and who plan for continued contact. Concerns about providing sufficient medication to relieve pain without precipitating the death of a terminally ill person should be discussed openly. If large doses of opioids are required, the physician may be hesitant to order them and nurses may be reluctant to administer the needed dose because the actions might be considered performing euthanasia or assisting suicide. The line between relieving pain and hastening death may not be clear. Patients can help with the ethical issues by making their wishes clear and by seeking the assistance of a like-minded counselor or medical professional in explaining their preferences.
Pain Management: The Future
Research concerning the physiologic mechanisms of pain continues in the early twenty-first century. These research efforts will most likely reveal new, more specific pain control measures. In the meantime, the controversy between governmental control of opioids to prevent abuse and the need for opioid use for pain relief continues. Professional care providers need education and organizational support that establishes standards and accountability for pain management. A recent initiative to require that pain be assessed as often as the patient's temperature, heart rate, respiratory rate, and blood pressure are taken provides a starting place for standards and accountability. Dissemination of information about pain-relieving drugs and other interventions remains crucial to quick, effective responses to pain. Access to analgesic medication and pain is crucial. Paying for the cost of health care should not become a barrier to pain management. Professionals must continue to advocate for patients in pain as American society struggles to afford health care for the entire population.
The public should be appropriately educated about pain and pain relief if it is to advocate for the use of pain medications. Fears that medication will cause addiction and the inability to experience and control life decisions prevents use of some effective pain measures. Patients' fear of stigma if they offer complaints of pain can keep providers from understanding patients' extent of pain and thus appropriately treating it.
Researchers and leading edge practitioners agree that people in pain can be empowered by knowing what to expect from health professionals in relation to pain management. Assessment of the pain and its causes is the first step. Professionals should seek a clear understanding of the meaning of the pain to the patient and family. Multiple approaches to the pain can be recommended. Concerns about addiction and other effects of the controls measure can be addressed through patient education and referral to pain specialists. The knowledge, skills, and tools exist to meet the goal that no one should die in pain.
See also: Children, Caring for When Life-Threatened or Dying; Symptoms and Symptom Management
Agency for Health Care Policy Research. "Management of Cancer Pain. Clinical Practice Guidelines No. 9." AHCPR Publication No. 94-0592. Rockville, MD: U.S. Department of Health and Human Services, 1994.
International Association for the Study of Pain, Subcommittee of Taxonomy. "Pain Terms: A Current List with Definitions and Notes on Usage. Part II." Pain 6 (1979):249–252.
McCaffery, Margo, and Alexandra Beebe. Pain: Clinical Manual for Nursing Practice. St. Louis, MO: C. V. Mosby, 1989.
McMillan, S. C. "Pain and Pain Relief Experienced by Hospice Patients with Cancer." Cancer Nursing 19, no. 4 (1996):298–307.
Morris, Jon, et al. "The Effect of Treatment Setting and Patient Characteristics on Pain in Terminal Cancer Patients: A Report from the National Hospice Study." Journal of Chronic Disease 39, no. 1 (1986):27–35.
World Health Organization. Cancer Pain Relief and Palliative Care. Technical Report Series 804. Geneva: Author, 1990.
See Hospice Option.
See Emergency Medical Technicians.
Gonzales v. Oregon
The U.S. Supreme Court on January 17, 2006 determined that the U.S. Attorney General's office did not have the authority to issue a ruling that prohibited the use of controlled substances for the purpose of physician-assisted suicide. The ruling, which affirmed the judgment of the Ninth Circuit Court of Appeals, allows a 1997 Oregon assisted suicide statute to remain in effect.
Voters in Oregon passed the Oregon Death with Dignity Act, Or. Rev. Stat. §§ 127.800 et seq., in 1994. The statute exempts state-licensed physicians from civil or criminal liability for dispensing or prescribing lethal doses of drugs to terminally ill patients. The physicians must adhere to the statute's requirements in order to be exempt from liability. The statute did not become effective for nearly four years after its enactment due to a series of legal and voter challenges. Between 1998 and 2006, a total of 246 Oregon patients died as a result of assisted suicide.
The Supreme Court visited the issue of assisted suicide in 1997. In Washington v. Glucksberg, 521 U.S. 702, 117 S. Ct. 2258, 138 L. Ed. 2d 772 (1997), the Court upheld a Washington state statute that proscribed assisted suicide. A group of terminally-ill patients and other groups sought a ruling that would declare the Washington statute unconstitutional. In rejecting the challenge, the Court noted that it would have to strike down policy choices in nearly every state in order to invalidate the Washington statute.
On November 6, 2001, former U.S. Attorney General John Ashcroft issued a ruling that declared that the use of controlled substances for the purpose of assisted suicide violated the Controlled Substances Act (CSA), 21 U.S.C. §§ 801 et seq. This ruling, known as the "Ashcroft Directive," reversed the position taken by former Attorney General Janet Reno in 1998. Two days after the publication of the directive, the state of Oregon filed suit in federal court against Ashcroft and other federal officers and agencies. The U.S. District Court for the District of Oregon on November 8, 2001 enjoined the enforcement of the directive.
The CSA includes a schedule of controlled substances that are available only through written prescription. In 1971, Attorney General John N. Mitchell issued a regulation that requires such a prescription to be used "for a legitimate medical purpose by an individual practitioner acting in the usual course of his professional practice." 21 C.F.R. § 1306.04 (2005). Under the CSA, physicians are required to register with the Attorney General, and the Attorney General may deny, revoke, or suspend a registration when the registration would be "inconsistent with the public interest." 21 U.S.C. §§ 822, 824 (2000).
In issuing the directive, Ashcroft determined that use of controlled substances for assis-ted suicide was not a "legitimate medical purpose." U.S. District Judge Robert E. Jones reviewed the CSA to determine whether Ashcroft had exceeded his authority in issuing the directive. According to Jones, Congress did not intend for the CSA to override a state's decision regarding what constitutes the practice of medicine. Since Ashcroft had acted pursuant to power that he did not possess, the court determined that his directive was invalid. Accordingly, the court entered a permanent injunction that prevented the directive from taking effect. Oregon v. Ashcroft, 192 F. Supp. 2d 1077 (D. Or. 2002).
The federal government appealed the decision to the U.S. Court of Appeals for the Ninth Circuit. In an opinion issued on May 26, 2004, the Ninth Circuit upheld the district court's decision. According to Judge Richard C. Tallman, who wrote the opinion, not only had Ashcroft exceeded his authority in issuing the directive, but also the directive had exercised control over an area of law that was traditionally reserved to the states. Unless Congress is "unmistakably clear," a unit of federal government may not exercise this type of control. The Ninth Circuit thus let the injunction remain in force. Prima Paint Corp. v. Flood & Conklin Mfg. Co., Oregon v. Ashcroft, 368 F.3d 1118 (9th Cir. 2004).
The U.S. Supreme Court granted certiorari in 2005 and rendered its decision on January 17, 2006. In an opinion written by Justice Anthony Kennedy, the majority affirmed the Ninth Circuit's decision. Kennedy wrote that Ashcroft's interpretation of the CSA was not entitled to deference by the Court because the CSA only extended limited power to the Attorney General's office. Moreover, the Court noted that Ashcroft did not have sufficient expertise for his rule to be entitled to deference. According to Kennedy, "[t]he deference here is tempered by the Attorney General's lack of expertise in this area and the apparent absence of any consultation with anyone outside the Department of Justice who might aid in a reasoned judgment."
The federal government continued to argue that its power extended to this area through the provisions of the CSA. Kennedy disagreed entirely. "The Government, in the end, maintains that the prescription requirement delegates to a single Executive officer the power to effect a radical shift of authority from the States to the Federal Government to define general standards of medical practice in every locality," Kennedy wrote. "The text and structure of the CSA show that Congress did not have this far-reaching intent to alter the federal-state balance and the congressional role in maintaining it." Accordingly, the Court affirmed the Ninth Circuit's judgment. Gonzales v. Oregon, __U.S.__, 126 S. Ct. 904, 163 L. Ed. 2d 748 (2006).
Justice Antonin Scalia, joined by two other justices, dissented. According to his dissent, the Attorney General's decision was entitled to some deference by the courts. Because it was entitled to deference, Scalia argued that the Court should have allowed the directive to stand. In a second dissent, Justice CLARENCE THOMAS asserted that the CSA was broad enough in application that it extended authority to the Attorney General.
Since the decision, six other states have considered proposals for assisted suicide statutes. According to a report issued by the Oregon Department of Human Services, the median age of a person who chooses assisted suicide in the state is 70. The majority of these people suffered from cancer, while others had Lou Gehrig's Disease or AIDS.
ASSISTED SUICIDE is the act of helping people to end their lives by providing information or means, which is self-administered. By contrast, euthanasia is the intentional killing of an individual in a relatively painless way for reasons of mercy. Traditionally, the law has considered any kind of suicide one of the most heinous crimes against society. In colonial America, under common law any one who committed suicide forfeited all his goods, leaving his family destitute in many cases. The colonies eventually abolished these harsh penalties, recognizing that the laws punished the wrong people. Lawyer Zephaniah Swift wrote in 1796 that to punish the family of an offender was the ultimate cruelty. The earliest American statute to outlaw suicide was enacted in 1828. Between 1857 and 1865 a New York commission led by Dudley Field, a New York jurist, was charged with reorganizing New York's civil and criminal law and created the first law to forbid any one from assisting another in taking their life. By 1868 nine of thirty-seven states had adopted laws making the assisting of suicide a crime.
Individual states have reevaluated assisted-suicide laws as medicine and technology have advanced, but the laws have generally remained constant. The Uniform Determination of Death Act (1981) states that when a person's heart and lungs stop or brain functions end the person is legally dead and may be disconnected from life support. Two legal documents also addressed the issue of life support: the living will and Durable Power of Attorney for Health Care. Both documents allowed a person to have their wishes addressed in the event they became unable to speak for themselves. Some states have enacted death with dignity laws such as Oregon's 1994 law.
The most famous cases of assisted suicide involve Dr. Jack Kevorkian, a Michigan pathologist. Kevorkian allegedly helped more than 130 terminally ill people commit suicide with a machine set up to deliver a fatal solution intravenously when the patient pulls a plunger. In 1999 Kevorkian was convicted of second degree murder and use of a controlled substance and was sentenced to two terms in prison.
Arguments over the issue of assisted suicide involve emotional and deeply personal religious beliefs. On one side, proponents argue that people have a right to die with dignity when their illness or disability has become so advanced that relief is unrealistic and that doctors who help these patients are following the ill person's wishes. Meanwhile, opponents argue that suicide in any form is immoral and that the Hippocratic oath prohibits doctors from assisting in suicide.
de Vries, Brian, ed. End of Life Issues: Interdisciplinary and Multidimensional Perspectives. New York: Springer, 1999.
Gorsuch, Neil M. "The Right to Assisted Suicide and Euthanasia." Harvard Journal of Law and Public Policy 23, no. 3 (summer 2000): 599–710.