Death With Dignity movement
Since the late pathologist Dr. Jack Kevorkian became famous, or infamous, depending on the point of view, in the 1990s for helping ill patients with doctor-assisted suicide, the issue of whether a terminally ill person has the right to determine when and how to end their life has been debated in public arenas and private living rooms. Is it an individual's right to die, or is it euthanasia? For most of us, there's no simple or easy answer.
“(My aunt’s) greatest fear was not dying, but that they were not going to let her,” said Linda Van Zandt, the niece of a California woman who, in the midst of suffering with Amyotrophic Lateral Sclerosis – ALS, or Lou Gehrig's Disease – chose to terminate her life, self-administering a bitter cocktail of physician-prescribed medication – an option provided by California's End of Life Option Act, which went into effect this June.
Colloquially called the Death With Dignity Act, qualified terminally ill patients in California, Oregon, Washington, and Vermont are offered the option to consume a lethal dose of doctor-prescribed medication, yet the person’s death isn’t reported as suicide, assisted suicide, homicide or drug overdose. The hitch is that, at the time of consumption, the patient is required to physically ingest the drugs without help. In return, the death certificate lists the cause of death as the patient’s terminal illness.
This August, Michigan Representatives Sam Singh (D-East Lansing) and Tom Cochran (D-Mason) introduced House Bill 5802, legislation to establish a similar law in Michigan, which would provide mentally stable, terminally ill adults with the legal means to access a hefty dose of life-ending medication.
“Now that the conversation is happening across the country, we thought it was a good time to start it in Michigan,” Singh said in mid-September. “There are about 20 days of the session, so there’s not many committee meetings at all. My thought is this (bill) won’t be taken up in this session. It will be an opportunity for different organizations to review the bills and give their thoughts, and, we will reintroduce this in January 2017, in the new session.”
Also sponsored by Singh and Cochran, is House Bill 5803, which would establish as a felony punishment, with a maximum 20-year prison sentence, for coercing a person to utilize Michigan’s would-be Death with Dignity Act. The bill would also criminalize falsifying a patient’s request or destroying the written request.
“What I see happening is that there are people with a terminal illness, in a lot of pain and they don’t have all the options available to them,” Singh said. “The bills are very specific. You have to have a terminal illness. You have to have independent doctors acknowledge you’re a competent individual, and that you have a terminal illness with less than six months to live. Then you can make the decision to use medication to end your life.
“I understand that issues like this are sensitive, especially within religious communities, but to me this is an issue that an individual needs to grapple with, within their own faith and own family, and that’s who I’m focusing on – the individual facing months and months of pain,” Singh continued. “I want them to have the same options that they have in other states here in Michigan. This is just one of a number of things that people with a terminal illness would have at their disposal.”
In the U.S., the battle over the right to die dates back to at least 1828, when New York passed the county’s first law explicitly criminalizing assisted suicide. On the other side of the debate, as early as 1906, Ohio legislators failed to pass a bill intended to legalize euthanasia.
Michigan entered the fray in 1990, with Pontiac-born Jack Kevorkian thrusting Oakland County into the firestorm. Doctor Death, as he became known, first hooked up his infamous “suicide machine” to Janet Adkins, a 54-year-old with Alzheimer’s Disease. After flipping the switch to start the infusion, Adkins died in the back of Kevorkian’s Volkswagen van in Holly’s Groveland Oaks County Park. Judge Gerald McNally, of Clarkston’s district court, dismissed the case under the condition that Michigan did not have a ban on assisted suicide.
Kevorkian went on to assist in the deaths of over 130 people, including two women whose deaths occurred a week prior to Halloween in 1991. Again, the case was dismissed, this time by Oakland County Circuit Judge David Breck, a ruling that was appealed by then-county prosecutor Richard Thompson. Kevorkian stood trial three times for assisted suicide without a single conviction, each time due to the lack of clarity on the legal ramifications for aiding in another’s suicide. By December of 1992, Governor John Engler signed into law Public Act 270, which outlawed assisted suicide, and faced a challenge from the American Civil Liberties Union (ACLU), which declined to comment for this article. Eventually, the Michigan Court of Appeals took up the fight in May of 1994 and ruled that the ban was unconstitutional on technical grounds – entitled “Assistance to Suicide,” the name of the act violated the grammatical subject-object rule. The legislative battle over the existence or absence of an assisted-suicide ban in Michigan continued until the passage of Public Act 296 in 1998 which made it a felony to assist an “individual who intends to kill himself or herself,” by providing the means to do so or by aiding in the plans for suicide.
By this time, Kevorkian had gotten his medical license revoked, but showed little regard for the strong arm of the law. In November of 1998, he provided CBS with video footage that showed Kevorkian, himself, administering the lethal injection that killed Thomas Youk, who had been diagnosed with ALS. It was the week of Thanksgiving when the footage aired on 60 Minutes. Within days, Kevorkian was charged with murder, after it was broadcast to an audience of several million witnesses.
“I don’t think (former prosecutor David) Gorcyca would have brought charges if that wasn’t on television,” said Oakland County Prosecutor Jessica Cooper, who, as Oakland County Circuit Court judge presided over Kevorkian’s murder trial following the death of Youk.
“The word is zealot. Because he was a zealot he believed that was the way he was going to change the law, or change the philosophy, and he was found not guilty in three previous trials, but he pushed the envelope too far because he actually took a life,” said Cooper. “What he wanted was to convince the jury to go outside the law – he was looking for jury nullification, and that is not what he got. He got a conviction.”
In April of 1998, the jury found him guilty of murder in the second degree, and was sentenced to 10 to 20 years in prison, of which he served seven, until he was paroled by former Governor Jennifer Granholm in 2007.
“It was the only time in my life I got some serious death threats,” said Cooper, of the trial. “He had lots of supporters, he had people who absolutely adored him. You had an issue that was debatable, and there were individuals that supported what he did… and there were people who opposed it… He brought the issue to light, but it’s a different issue, a different time.”
Although his notoriety rivals most, Kevorkian was far from the sole advocate of Michigan’s right to die movement.
Other notable attempts to reverse the ban on assisted suicide included U.S. Senator Gary Peters', then a Michigan state senator, introduction of Senate Bill 653 in 1997 which proposed the Terminally Ill Patient’s Right to End Unbearable Pain or Suffering Act, conditional upon the approval by the voters in November of 1998. It failed to get beyond the Senate Judiciary Committee. Merian’s Friends, on the other hand, were successful in getting the issue on the ballot. The Michigan Legalization of Lethal Medication to Terminally Ill, known as Proposal B, was defeated by voters, 71 to 29 percent.
Almost two decades later, public sentiment has had time to change.
The results of a current Gallup Poll illustrate a dramatic shift in public opinion since 1950, when only 36 percent were in favor of allowing a doctor to “end a patient’s life by painless means,” provided the patient has a terminal illness and requests aid in dying. In May of this year, Gallup reported that 69 percent of the U.S. is in favor of the practice. Interestingly though, only “about half of Americans say doctor-assisted suicide is morally acceptable,” and only 51 percent admit they “would consider ending their lives if faced with terminal illness.”
But it’s hard to say how a person would lean until they’ve received a terminal diagnosis.
“I call it the Dick Cheney Effect,” said Van Zandt, the woman who helped her aunt access lethal medication through California’s Death With Dignity Act, referring to the former vice president’s waffling on his opposition to gay marriage when wrestling with his daughter’s love of a woman.
“My aunt voted against (the law) because it went against her religion… and then she became horrified she did that to families. There’s nothing like being confronted with it to change your mind.”
Modeled after the nation’s first Death With Dignity Act, passed in Oregon in 1997, Singh and Cochran’s bill outlines a step-by-step procedure designed to give terminally ill adults access to the life-ending medication, while still maintaining safeguards to prevent abuse and providing heath care providers the right to abstain from partaking in the procedure.
Unlike the assisted suicide practiced by Kevorkian, the bill definitively states it “does not authorize a physician or any other person to end a patient’s life by lethal injection, mercy killing, or active euthanasia. Actions taken in accordance with this act do not for any purpose, constitute suicide, assisted suicide, mercy killing or homicide under the law.” Rather, the terminally ill individual must self-administer the medication, without physical assistance from others at the time the medication is ingested. At the same time, the bill makes it unlawful for any life, health or accident insurance or annuity policy to be affected by the use of life-ending medication.
On the part of the patient seeking life-ending medication, they are required to make an initial oral request, and then wait at least 15 days to do so again. Later, after having various meetings with physicians, the patient signs a written request, declaring awareness that the medication will kill them, in a matter of minutes or up to a few hours. Signing on the dotted line also indicates the patient takes take full moral responsibility for their actions. The attending physician can write the fatal prescription no sooner than 48 hours from receipt of the written request, provided the doctor deems the patient qualified.
To get to that point, the attending physician, or primary care doctor, starts their end of the process by making the initial determination of whether the individual has a terminal illness – a medical judgment that implies the person has an incurable, irreversible, or progressively pathological disease – and has six months or less to live. Per the bill, the physician is required to explain alternatives to the fatal dose, including “comfort care, hospice care, and pain control;” confirm the patient is capable of making an informed decision and that they are doing so voluntarily; inform the patient of the right to rescind their request at any time; require proof of residency and identification; encourage the patient to inform their next of kin; and urge the patient not to take the drugs alone nor in a public place. Then, a second, consulting physician must meet with the patient and verify the conclusions drawn by the attending physician. If there is not consensus among physicians, the process cannot move forward. Additionally, if any provider is unable or unwilling to heed the patient’s request for life-ending medication, the patient may transfer to a new provider.
The bill aims to protect against abuse by individuals seeking death as a result of a mental health condition, such as depression. To that end, if either physician concludes that the patient is exhibiting a psychiatric or psychological condition that impairs decision making, including depression, the physician must refer the patient to counseling from a licensed provider. If and when the patient has been cleared as capable of making an informed decision, the multi-week or multi-month process may continue.
When the patient signs the written request for life-ending medication, two witnesses must be present, neither of whom may be the patient’s attending physician. Furthermore, at least one of the two witnesses “must not be a relative,” nor “entitled to any portion of the individual’s estate upon death, and must not own, operate, or be employed where the individual is a patient or resident.” Among other declarations, the witnesses are charged with confirming that the patient “appears to be of sound mind and not under duress, fraud or undue influence.”
Although HB 5802, like other death with dignity acts in the country, takes caution by requiring multiple parties to be involved, such safeguards are only employed during the process leading up to the time of prescription. One of the final steps on behalf of the doctor is that, “immediately before writing the prescription for the medication,” he or she must “verify that the patient is making an informed decision.” Once the script is written and filled by the pharmacy, though, it is up to the patient as to when they will take it – if at all.
Statistics show that approximately two-thirds of patients who receive the drugs do ingest them, while “the other one-third have the relief of having the medication,” said Matt Whitaker, multi-state implementation manager with Compassion and Choices, a death with dignity advocacy group. “Having the option is power and control for them, and allows them to live without the terror.
“A lot of people make this decision because, when they’re told with clarity what the dying process could look like for their specific disease process, it’s horrific. Brittney Maynard is an example,” said Whitaker, referring to the 29-year-old who, before the law was passed in her home state of California, moved to Oregon to utilize the end of life option, which she died fighting for in 2014.
“She had a brain tumor that was causing symptoms that were more aggressive and severe, they would leave her unable to speak or to recognize people, and eventually, leave her in a state of paralysis until her body shut down, from dehydration or her brain running amuck.”
According to the 2015 annual report required by the Oregon Death With Dignity Act, 218 people utilized their right to assisted dying. That’s up from 1997, the first year it was implemented, when 23 people used it. The Washington State Department of Health also publishes an annual report explaining use of the Death With Dignity Act. In 2015, 213 people received the medication, compared to 87 recipients in 2010, the first full year that the state’s law took effect. The proposed Michigan bill would require an annual report as well.
However crude Kevorkian’s actions were, his passion for a person’s right to end their own suffering caused the health care system to take a second look at end of life care.
“Sometimes people would be afraid to use morphine because it would hasten the death, but you could see, privately it went on all the time,” said Jessica Cooper. “(Health care providers) would say, here is a bottle of pills, only take one because the whole bottle will kill you. And they would leave the pills and walk away.”
As a result of the increased discussion on assisted suicide and death itself, the medical community stepped up by making improvements to pain management, also known as palliative care.
“Hospice wouldn’t be where it is today if it wasn’t for Dr. Kevorkian,” said attorney Geoffrey Fieger, who became a household name upon theatrically defending Kevorkian in numerous courtrooms. “Hospice owes it’s existence to Dr. Kevorkian, and maybe a little to myself….You can get as much morphine as you want and pump it into yourself and kill yourself, they just don’t talk about it.”
Fieger was vaguely referring to the medical procedure known as palliative sedation, in which a person slips into a coma as a result of drug overdose, and then eventually stops breathing and dies. The death certificate, as in death with dignity cases, is listed as the terminal illness for which the patient went into hospice. The same is true of cases when patients voluntarily stop eating or drinking, when dehydration triggers death.
Still, “hospice and palliative care is not designed to hasten death,” said Barry Cargill, executive director of the Michigan Home Care and Hospice Association, which does not take a position on medical-aid-in-dying initiatives. “Occasionally, if pain-relieving drugs (are) used, you’re always going to have other symptoms that come up. There may be a point at which it could be interpreted that the doctor is hastening the death. That is certainly not the intention of hospice. That’s not the intention of the doctor prescribing the medication,”
To some, it may be conceived that the option provided by death with dignity laws is just another hue on the spectrum of end of life care, but many are staunchly opposed, including the American Medical Association, which refers to the procedure outlined in death with dignity laws as “physician-assisted suicide.”
“It is understandable, though tragic, that some patients in extreme cases – such as those suffering from a terminal, painful, debilitating illness – may come to decide that death is preferable to life,” stated the formal opinion of the association. “However, permitting physicians to engage in assisted suicide would ultimately cause more harm that good. 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.”
Today's debate will eventually become history that future generations mistake for being the way it always was. Similarly, prior to the passage of any state law protecting the right to kill oneself, the nation had other health-related concerns to grapple with.
Nearly 50 years ago, faced with improving medical technology that provided the mechanical means to keep a person alive beyond what science could previously do, the American Hospital Association penned the Patient’s Bill of Rights in 1970, which indicated that a patient can refuse treatment at will. It took another twenty years for right to demand or refuse treatment to be codified in federal law, under the Patient Self-Determination Act. It mandated that providers at federally-funded hospitals must inform patients of their right to demand or refuse treatment, and brings into play the advance directive.
Intended to express an ill patient’s wishes in the face of an emergency, an advance directive is “a written document in which a competent individual gives instructions about his or her health care, that will be implemented at some future time should that person lack the ability to make decisions for himself or herself,” states a booklet prepared by the Michigan Legislature. The living will, one of three types of advance directives, is considered legally binding in 47 states, but not Michigan. Do-not-resuscitate (DNR) orders are legally binding in all health care facilities, except in hospitals. The third advance directive is a patient advocate designation, in which a person designates someone to make decisions on their behalf in the event they become unable to.
"As a Catholic health care organization, we act in ways that are aligned with the Ethical and Religious Directives for Catholic Health Care Services,” said Michael Miller, regional chief mission officer of Saint Joseph Mercy Health System, referring to the directives published by the US Conference of Catholic Bishops, which does not support the prescription of life-ending medication.
“If I do something to kill myself or the physician does something to kill me, the intention is still killing, which is problematic from a Catholic Christian perspective,” said Miller. “So whether you change the name, the important thing is the intention. Killing is the intention, the ending of a life – it’s not an accidental death. It’s an intended death and that’s problematic.”
Also on the opposing side of the death with dignity movement is a constituency of disability advocacy groups, including the Michigan Disability Rights Coalition (MDRC), which are concerned that the laws target people with disabilities and reinforce the stigma that a life which lacks some physical ability is inferior to an able-bodied person.
“The biggest problem with assisted suicide to me,” said MDRC’s Norm DeLisle, project consultant and the organization’s former executive director, “is that it raises the ethical implications of having assistance killing yourself – it doesn’t matter if it’s medical (personnel) or a family member. In every other area of law, you’d question the interest of the other party in a situation where the outcome was a loss of life.”
While any effort towards political change must go through a series of trial and error, some people close to those who’ve gone through death with dignity lethal medication hope to see improvements in the future in the execution of the right to die movement.
“I feel that there are ways they could make it more compassionate for sure,” said Van Zandt, who mixed the lethal drink her aunt sipped before she slipped away. “I do think the law needs to be made available and still have the safety mechanisms in place, where it’s a private interview with the patients. One of the worries (opponents) have is that people will be coerced into ending their life because they don’t want to be a burden, and you can’t legislate away that, because that’s a moral issue. I think it’s a very difficult thing to write laws that control morality, because people will do what they’re going to do, regardless.”