Harold and Patricia Tucker recently passed their 50th anniversary. There was no celebration.
Married a month after their high school graduation, Patricia worked as a secretary in a local law firm to help Harold attend law school. Harold went on to climb the corporate ladder, becoming the chief counsel of a major insurance company by age 44. Unable to get pregnant, they adopted two children: John and Elizabeth.
Disaster stuck when Harold was 58. After experiencing memory problems, speaking difficulties, and bouts of physical pain, doctors suggested a series of tests, culminating in a biopsy of the brain. He was diagnosed with Pick’s disease.
There is no known cure for Pick’s disease, which attacks the frontal and temporal lobes of the brain. The symptoms include dementia, memory loss, and loss of motor control, typically leading to death within eight to ten years. Patients often spend their final days in an assisted living facility.
Pick’s disease intensified Harold’s constant pain. Relief only came from heavy drug usage and semi-consciousness.
The Dilemma of a Fatal Disease
Terminal conditions are devastating. Life turns upside down – even the values held for a lifetime can be questioned. Psychologists claim that no one copes with impending death in the same manner, although many go through a variation of Elizabeth Kübler-Ross’s five stages of grief: denial, anger, bargaining, depression, and acceptance.
As Harold’s symptoms increased, he was forced to resign from his job, relying on Patricia for his day-to-day care. Every movement sent spasms of pain through his body, necessitating a daily regiment of opioid pills and patches. The side effects of the medication were almost as bad as the pain itself, with bouts of severe constipation, stomach aches, and drowsiness. The need for Patricia to handle his most intimate hygiene needs confirmed his helplessness.
Rather than spend his last days in pain, using up the savings intended for his wife and family, Harold determined that his life would end on his terms – not at the whim of some disease.
What actions would you take if diagnosed with a fatal, debilitating disease such as amyotrophic lateral sclerosis (ALS) or Alzheimer’s disease? Many believe that they would prefer to die on their terms, rather than endure the ravages of disease. Others accept continued life, despite the emotional and financial costs for their survivors.
Few realize that they do not have a choice if the situation arises, especially if they live in 45 of the 50 United States or the District of Columbia, where assisted suicide is illegal. In the five remaining right-to-die states – California, Montana, Oregon, Vermont, and Washington – the right to control the circumstances of your death is strictly controlled.
Suicide Versus Euthanasia
While suicide is the act of killing oneself, euthanasia is the process of ending a life to stop pain and suffering. While suicide is always a voluntary act, euthanasia can be voluntary (done with the victim’s consent) or involuntary (without consent). The former is also known as assisted suicide. Involuntary euthanasia is considered murder, regardless of motive.
Importantly, euthanasia can be active (whereas a single act is performed with the intent to end the life) or passive (the withholding of treatment or sustenance).
Suicide and euthanasia have been considered murder (or an accessory to murder) under state laws according to the 1997 Supreme Court ruling in the case of Washington v. Glucksberg. Another Supreme Court case in the same year – Vacco v. Quill – affirmed that an individual’s right to die is not a fundamental right guaranteed under the U.S. Constitution. Despite the opposition, proponents continue to advocate for natural deaths, sometimes called death with dignity, in state legislatures.
Legal Protections of End-of-Life Decisions
As a consequence of continued political efforts to protect dignity and independence at the end of life, each of the 50 states have passed laws allowing the following:
1. Living Wills
Also known as an advance directive, a living will is a legal instrument concerning healthcare should a person become incompetent. Often combined with a medical power of attorney, the will allows terminally ill patients to direct “the withholding or withdrawal of life-sustaining procedures in a terminal condition” as expressed in the California Natural Death Act of 1976. The remaining states subsequently passed similar acts, the specific requirements of each varying from state to state.
A living will only takes effect if two physicians certify that a patient is unable to make medical decisions, their condition meets the standard specified in the living will, and the will complies with the state’s requirements.
In 1990, Congress passed the Patient Self-Determination Act requiring healthcare facilities – such as hospitals, nursing homes, and home health agencies – to inform patients of their right to create an advance directive at the time of admission.
2. Surrogate Healthcare Decision-Making
Whenever a patient is incapable of making decisions about care, physicians must turn to a patient surrogate for directions on future care, especially those made near the end of life. This requirement is in the American Medical Association (AMA) Code of Medical Ethics.
Creating a medical power of attorney ensures that the surrogate is trusted by the patient. The scope of the authority may be limited or unlimited, depending on the grantor’s wishes. For example, the patient might specifically direct that no feeding tube or mechanical breathing is used, but other decisions can be made by the surrogate.
Each state has laws regarding the proper wording of the agreement, as well as conditions that can affect the choice of proxies and the conditions under which a power of attorney might apply. A medical power of attorney remains in effect until the death of the grantor, repudiation by the grantor, or the surrogate’s unwillingness or inability to exercise the authority.
3. Withdrawal of Life-Sustaining Medical Care
While physicians are legally and professionally prohibited from actively causing a patient’s death, they have the legal and professional right to withhold or withdraw care from a critically ill patient when such treatment would be futile.
The Supreme Court recognized the principle that a competent person has the right to forego treatment, including nutrition and hydration, in the case of Cruzan v. Director, Missouri Department of Health. By extension, surrogates have the same authority acting on behalf of the patient.
Nevertheless, controversy remains, as evidenced in the cases of Terry Schiavo in Florida and Brittany Maynard in California.
Controversial Legal Cases Regarding Death With Dignity
The Terry Schiavo Case
Theresa Schindler Schiavo was a 27-year-old married woman who collapsed from sudden cardiac arrest in February 1990. Lacking a living will, her husband, Michael Schiavo, was appointed her legal guardian in June 1990. One year later, her physician determined she was in a persistent vegetative state requiring feeding and hydration tubes.
In 1993, her husband initiated a do-not-resuscitate order for Mrs. Schiavo based upon his belief there was no hope for her recovery. In 1998, Mr. Schiavo requested the removal of her feeding tube based upon his representation of Terri’s oral statements that she would not want to be kept alive on a machine when the chances of recovery were minuscule. Her doctors agreed that Terri was in a persistent vegetable state with little hope for recovery.
Terri Schiavo’s parents, Robert and Mary Schindler, disagreed with the request to remove the feeding tube, claiming that as a devout Roman Catholic, Terri would not refuse nutrition and hydration. They also tried to remove Michael as Terri’s legal guardian.
For years, the case of Terri Schiavo moved through the Florida courts, the state legislature, and the U.S. Congress. Legal battles continued until 2005 when Michael’s guardianship – and his right to remove the feeding tube – was legally verified. Terri Schiavo died on March 31, 2005 – 15 years after her initial collapse.
A 2005 Gallup Poll indicated that more than half of Americans agreed with the decision to remove the feeding tube. An earlier Gallup Poll in 2003 also found that 80% of Americans believe that the spouse of a patient in a persistent vegetative step caused by irreversible brain damage should be able to make the decision to end the patient’s life.
The Brittany Maynard Case
In January 2014, doctors diagnosed 29-year-old Brittany Maynard with grade II astrocytoma. Despite brain surgery, the tumors returned, leading to a diagnosis of grade IV astrocytoma – commonly called glioblastoma – in April 2014. According to the American Brain Tumor Association, glioblastoma leads to headaches, seizures, memory loss, loss of movement, language dysfunction, and cognitive impairments.
Her physicians gave her six months to live.
Brittany agreed that no treatment could save her life, while the recommended treatments – surgery and radiation – would destroy the time she had left. In a CNN article, she pondered hospice care – but she worried about morphine-resistant pain and hanging on “even though cancer is eating my mind.”
Brittany and her family moved to Oregon to take advantage of its Death With Dignity law (at the time, her home state of California had no such law). During her last days, she wondered, “Who has the right to tell me that I don’t deserve this choice? I hope for the sake of my fellow American citizens that I’ll never meet that this option is available to you. If you ever find yourself walking a mile in my shoes, I hope that you would be given the same choice and that no one tries to take it from you.”
On November 1, 2014, Brittany died as a result of medication she received under Oregon’s Death With Dignity Act. The Act passed in 1997 with 51% of the vote. An effort to repeal the Act later the same year failed by a 60/40 margin. California subsequently passed the End of Life Option Act that became law on June 9, 2016.
Conflicts Regarding the Right to Die
The American Medical Association has opposed physician participation in euthanasia or assisted suicide for decades. However, the Association does recognize a physician’s right to decline to initiate or continue life-prolonging or futile measures. They can also administer medication if the primary purpose is to relieve pain even though there is “a secondary consequence of hastening death.”
A 2013 poll in the New England Journal of Medicine found two-thirds of their readers – most of which are physicians – were against physician-assisted suicide.
Nevertheless, many physicians have begun to reconsider their role in end-of-life decisions:
- Marcia Angell, MD:The senior lecturer at Harvard Medical School and a former editor-in-chief of the New England Journal of Medicine wrote in The New York Times that “when healing is no longer possible, when death is imminent and patients find their suffering unbearable, then the physician’s role should shift from healing to relieving suffering in accord with the patient’s wishes.”
- Michael Irwin, MD: The former medical director at the United Nations asserted in the Mirror that “we are able to choose all kinds of things in life, from who we marry, to what kind of work we do, and I think when one comes to the end of one’s life, whether you have a terminal illness or whether you’re elderly, you should have a choice about what happens to you.”
- Lonny Shavelson, MD: A Californian emergency room physician interviewed by The New York Times, Dr. Shavelson thinks the decision to help a patient end his life should be no different from any other medical decision: “Dying should not be completely separate from everything else we do in medicine.” He has started a practice to provide care to those seeking to end their lives.
Most of the formal religious organizations in the United States are opposed to any effort that might legalize or promote euthanasia in any form, excluding the withholding of assisted breathing, food, or water. According to a Pew Research article, a sampling of the faiths and the reasons include:
- Assemblies of God. Edgar R. Lee, chairman of the church’s Commission on Doctrinal Purity, says, “God is the giver of life, not us.”
- Roman Catholic Church. “We don’t have the authority to take into our hands when life will end. That’s the Creator’s decision,” according to John A. DiCamillo of the National Catholics Bioethics Center.
- Episcopal Church. In 1991, the church passed a resolution that stated it is “morally wrong and unacceptable take a human life in order to relieve the suffering caused by incurable illness.”
- Judaism. The three branches of Judaism – Orthodox, Conservative, and Reform – prohibit assisted suicide in any circumstance.
- Southern Baptist Convention. According to C. Ben Mitchell, a professor of moral philosophy at SBC-affiliated Union University, “We believe that [assisted suicide] is a usurpation of God’s prerogative because he is our creator and sustainer.”
There are notable exceptions to this position, specifically Archbishop Desmond Tutu of the South African Anglican Church. Bishop Tutu, a recipient of a Nobel Peace Prize, as well as the U.S. Presidential Medal of Freedom, explained his position in a Guardian article: “People should die a decent death. For me that means having had the conversations with those I have crossed in life and being at peace. It means being able to say goodbye to loved ones – if possible, at home. I revere the sanctity of life – but not at any cost. I confirm I don’t want my life prolonged. I can see I would probably incline towards the quality of life argument, whereas others will be more comfortable with palliative care. Yes, I think a lot of people would be upset if I said I wanted assisted dying. I would say I wouldn’t mind actually.”
Morality and Ethics
Many physicians, religious leaders, and ethicists concede the apparent unfairness prohibiting active euthanasia in all cases. Nevertheless, the alternative to them is a “slippery slope,” writes Edmund Pelligrino, MD and professor emeritus of medicine and medical ethics at Georgetown University, in “Regulating How We Die.”
According to the New York State Task Force on Life and the Law, opponents of right-to-die laws fear that unscrupulous physicians, greedy relatives, and a callous government will victimize particular social groups – the poor, minorities, and the least educated – when the cost of long-term chronic care is high compared to the relatively small cost of euthanasia.
Their concerns are especially relevant in a society with an aging population. The Population Reference Bureau projects that the population of people 65 years and older will double by 2060, accounting for one in four Americans. Furthermore, 85% of older Americans have one or more chronic diseases and account for 80% of healthcare costs, according to Public Health Reports. For example, a Kaiser Family Foundation study indicated that in 2013, the Medicare cost was $5,562 for a person age 65, and $13,466 for a person age 85.
The Financial Dilemma
In an interview with The Washington Times, Mildred Solomon, president and CEO of The Hastings Center (a nonpartisan bioethics research institute), noted that millions of people die each year after years of debilitation and chronic illness. She claims that “our healthcare system is not designed for chronic care. If we’re going to talk about death and dying in America, we need to be talking about redesigning the healthcare system.”
Those who oppose assisted right-to-die laws propose that medical advances and palliative care are viable options to ending life. However, they often overlook the quality of life experienced by the patient or the costs of such treatment which can bankrupt their families. The question of whether the Nation has the will or ability to cover such costs through programs like Medicare or Medicaid is rarely considered.
According to TIME, 25% of Medicare costs are spent on 5% of patients in the last year of life. A Mount Sinai School of Medicine study found that the out-of-pocket expenses for the patients’ families were greater than their total financial assets (excluding home value) of four of ten American households.
Ezekiel J. Emanuel, MD, a senior fellow at the Center for American Progress, claims in a New York Times editorial that less than 1% of Americans who die each year account for 10% to 12% of total healthcare spending. Under current conditions, the proportion of costs required to care for those in the last year of life will continue to escalate.
Existing U.S. Right-to-Die Laws
Legislators in the five states with right-to-die laws have recognized the possibility of abuse and the concerns of those who oppose assisted euthanasia. As a consequence, the laws do the following:
- Allow physicians and healthcare systems as a matter of conscience to decline participation in any manner in the operation of the laws.
- Restrict the decision to end life to legal residents of the state who are 18 years or older and are suffering from a terminal disease with six months or fewer left to live. These conditions require written confirmation by the attending and a consulting physician, and the physicians’ statement that the patient has been fully informed of their condition (California also requires that the patient is physically capable of administering the drugs personally).
- Require that the patient has been fully informed of alternatives to death and is mentally competent and physically capable of expressing his or her wishes to seek euthanasia (surrogate decisions are not allowed in any state), as well as notification of the patient’s next-of-kin at the time of the initial request.
- Establish three requests (two oral and one written) by the patient to the attending physician to proceed. There are mandated waiting periods between the requests and delivery of the drugs to ensure the patient is committed to his or her decision.
For almost 20 years, more than one-half of Americans (68%) have agreed that doctors should be allowed to assist an incurably ill person to commit suicide, according to a 2015 Gallup Poll. A slight majority of Americans also believe that doctor-assisted suicide is morally acceptable. A 2015 Rasmussen Report had similar findings.
Assisted euthanasia is clearly controversial with well-meaning people on both sides of the issue. For those opposed, euthanasia has profound effects upon a person’s soul, as well as the morality of society. Those who support the right to die with dignity recall the words of famed physicist Stephen Hawking in a 2015 interview with the BBC television network, as reported by The Guardian: “To keep someone alive against their wishes is the ultimate indignity. I would consider assisted suicide only if I were in great pain or felt I had nothing more to contribute but was just a burden to those around me.”
Do you support your state’s laws regarding physician-assisted euthanasia?