End-of-Life Choice, Palliative Care and Counseling

Posts TaggedDeath with Dignity Act

Massachusetts Vote May Change How the Nation Dies

by Lewis M. Cohen
Slate
October 29, 2012

This Election Day, Massachusetts is poised to approve the Death With Dignity Act. “Death with dignity” is a modernized, sanitized, politically palatable term that replaces the now-antiquated expression “physician-assisted suicide.” Four polls conducted in the past couple of months have shown strong support for the ballot question, although a well-funded media blitz by the opposition is kicking in during the final several weeks and may influence voter opinions.

Oregon’s Death With Dignity Act has been in effect for the past 14 years, and the state of Washington followed suit with a similar law in 2008. Despite concerns of skeptics, the sky has not fallen; civilization in the Northwest remains intact; the poor, disenfranchised, elderly, and vulnerable have not been victimized; and Oregon has become a leader in the provision of excellent palliative medicine services.

But the Massachusetts ballot question has the potential to turn death with dignity from a legislative experiment into the new national norm. The state is the home of America’s leading medical publication (the New England Journal of Medicine), hospital (Massachusetts General), and four medical schools (Harvard, Boston University, University of Massachusetts, and Tufts).  Passage of the law would represent a crucial milestone for the death with dignity movement, especially since 42 percent of the state is Catholic and the church hierarchy vehemently opposes assisted dying. Vermont and New Jersey are already entertaining similar legislature, and if the act passes in Massachusetts, other states that have previously had unsuccessful campaigns will certainly be emboldened to revisit this subject. More

New Jersey Could Become 3rd State With Right-to-Die Law

By Tina Susman
The Los Angeles Times
September 27, 2012

A New Jersey lawmaker has proposed a right-to-die law for that state’s terminally ill people which, if passed, would make the state the third in the nation after Oregon and Washington to allow those with deadly diseases the chance to end their own suffering.

The Death With Dignity Act would allow a “qualified patient to self-administer medication to end life in a humane and dignified manner,” said the bill, introduced this week by Democratic Assemblyman John Burzichelli (D-Gloucester). But as the Star-Ledger noted, it would not be easy to qualify to receive life-ending drugs.

An individual who has six months or less to live would have to make at least two verbal requests and one written request — with two witnesses on hand for the written request — before he or she could receive the medication. Two doctors would have to certify the terminal diagnosis, and those doctors would be required to send the patient for counseling. The bill in its current form also says voter approval would be needed for the law to take effect as it is now written.

Burzichelli said he expects lengthy debate on the bill. “This is the beginning of discussing a topic … we’ve got to get a sense of how people feel,” he said, the Star-Ledger reported. “People are not favorable to a Dr. Kevorkian suicide bill that says someone who’s 45 and depressed and decides to kill themselves with help. That’s not what this bill is.” More

Northampton woman, plagued with terminal illness, supports ‘Death with Dignity’ option on the Massachusetts ballot

By Dan Ring
The Republican
August 20, 2012

Myra P. Berzoff said she doesn’t know if she would take life-ending medications, but said she would like the choice.

Berzoff, a Northampton resident for about 12 years, has been receiving home-based hospice services through Cooley Dickinson Hospital. At 91, she needs oxygen virtually 100 percent of the time, or else she would suffocate. She said she was diagnosed with emphysema three years ago and lives with the fear she could die from breathlessness.

Berzoff said she is a strong supporter of a ballot question on Nov. 6 that if approved by voters would allow adults to self-administer lethal drugs after requesting a prescription. The proposed Death with Dignity Act is modeled after similar laws in Oregon and Washington, also passed by voters. To be eligible, people would need to be diagnosed with a terminal illness and given six months or less to live by a primary doctor with verification by a consulting doctor.

Berzoff, who ran programs and performed other duties at the Helen Keller Services for the Blind in New York for about 20 years, said she wants to live long enough to vote for the ballot question. “I think everybody has a right in making that decision if they are of sound mind,” she said. “I don’t see any point in forcing people to live on and on. I don’t see a reason.”

Opponents call the ballot initiative “physician-assisted suicide.” Critics say that hospice and palliative care are better choices. A new group, called the Committee Against Physician Assisted Suicide, has started a web site at www.stopassistedsuicide.org.

Berzoff said she is losing weight, requires oxygen around the clock and must use a walker to get from room to room in her home.

“I don’t know how much palliative care will do for me in the final analysis,’’ she says. “I don’t know how sick I will get in the final analysis.”

She said she used to smoke about a half pack of cigarettes a day, but quit decades ago when her grand-daughter, Sarah, then 4, told her she didn’t want her to die from smoking. She doesn’t know if smoking caused her emphysema.

Berzoff , who has Medicare, received hospice because she said her doctor has twice certified she had less than six months to live. But she said she has refused to die and that she doesn’t consider herself terminally ill as long as she has oxygen.

She said she has reached no conclusions about whether she would self-administer drugs to instantly take her life.

“I think I should have the right if tomorrow I decide I want to do myself in,” she says bluntly. “I’m using up resources. I feel very strongly about that.”

Basically the same law was enacted in Washington in 2009 and Oregon in 1997. Relatively low numbers of people have used the law, including 114 people who received the lethal medications prescribed by a doctor in Oregon last year and 103 in Washington, according to reports by public health authorities in those states. Roughly a third of those in each state did not use the drugs, however.

Among the opponents of the ballot question in Massachusetts are the four Roman Catholic bishops including Bishop Timothy McDonnell in Springfield.

In the September issue of the Catholic Mirror, due to be released the end of this month, McDonnell writes that the ballot question seeks to authorize physicians “to give death-dealing drugs so that people with serious illness can commit suicide,” according to an excerpt of his column provided by the Diocese of Springfield.

James F. Driscoll, executive director of the Massachusetts Catholic Conference, the public policy arm for the Roman Catholic bishops in Massachusetts, said the church values life from conception to death. He said the church is a big supporter of hospice and palliative care. McDonnell also emphasizes hospice and palliative care in his upcoming column.

Driscoll said the ballot question would set a dangerous precedent. “The church is against this initiative and thinks it is a dangerous path to take a human life before natural death,” Driscoll said.

About 2.6 million Catholics live in Massachusetts, or about 40 to 45 percent of the population, according to Driscoll.

The new coalition, named the Committee Against Physician Assisted Suicide, said it plans to recruit citizens, healthcare leaders, and religious organizations to defeat “this poorly written, confusing, and flawed ballot question,” according to its web site.

Under the ballot question, which qualified with the signatures of about 125,000 registered voters, terminally ill patients would need to make three requests for the medications including two oral and one written, with two different waiting periods between the final request and the prescription.

Stephen Crawford, a spokesman for Dignity 2012, said two former editors of The New England Journal of Medicine and other key doctors were among the original signers of a petition for the law.

The Massachusetts Medical Society, however, opposes the ballot question, keeping in line with the Society’s longstanding policy against physician-assisted suicide, said spokesman Richard P. Gulla.

Dr. John S. Howland, a family physician in Southbridge, said the ballot question is not good for physicians because it would violate the Hippocratic Oath. “It’s very detrimental to the doctor-patient relationship,” he said.

Crawford said the ballot question does not call for suicide in the traditional sense, which involves depression and despair. He also said the initiative should not be labeled “physician-assisted suicide,” which conjures up images of the late Dr. Jack Kevorkian and his “suicide machine” made of scrap parts.

“This is about patients who are suffering,” Crawford said. “This isn’t about the doctors.”

Berzoff, born in New Haven, grew up in a different era.

Her father, a Yale University graduate, contracted tuberculosis, an infectious disease mostly of the lungs. The family moved to western North Carolina , along with thousands of others with the then-incurable disease, seeking fresh air and sunshine.

Born of Jewish parents, she attended for 11 years and graduated from St. Genevieve-of-the-Pines, an all-girls Catholic school, considered one of the state’s best private schools. She obtained her bachelor’s at the University of North Carolina at Chapel Hill and her master’s at The Teachers College at Columbia University.

Her husband, Sydney, a longtime director of development for Brandeis University, would not have agreed, she concedes. He would have taken any treatment to stay alive, she said. He suffered for many months from lymphoma before dying at 49, leaving her a widow for the last 45 years. A daughter, Barbara Shapiro, 49, died of breast cancer after a prolonged period.

Another daughter, Joan Berzoff, is a professor at the School of Social Work at Smith College in Northampton, and a third daughter, Emily Enteress, is businesswoman.

Taught by nuns at Catholic school, Myra Berzoff scoffs at the argument that the ballot question is dangerous because it advocates taking a human life before natural death. She said she should have the option offered by the ballot question.

“That’s absurd,” she said. “If you’re suffering, it’s your life. It isn’t the life of the Catholic church. It’s mine.”

Review of aided dying reveals surprise

By Katie Hafner
The Sacramento Bee
August 11, 2012

Dr. Richard Wesley has amyotrophic lateral sclerosis, the incurable disease that lays waste to muscles while leaving the mind intact. He lives with the knowledge that death is chasing him down, but takes solace in knowing that he can decide exactly when, where and how he will die.

Under Washington state’s Death With Dignity Act, his physician has given him a prescription for a lethal dose of barbiturates.

He would prefer to die naturally, but if dying becomes protracted and difficult, he plans to take the drugs and die peacefully within minutes.

“It’s like the definition of pornography,” Wesley, 67, said at his home in Seattle. “I’ll know it’s time to go when I see it.”

Washington followed Oregon in allowing terminally ill patients to get a prescription for drugs that will hasten death. Critics of such laws feared that poor people would be pressured to kill themselves because they or their families could not afford end-of-life care. But the demographics of patients who have gotten the prescriptions are surprisingly different than expected, according to data collected by Oregon and Washington through 2011.

Wesley is emblematic of those who have taken advantage of the law. They are overwhelmingly white, well-educated and financially comfortable. And they are making the choice not because they are in pain but because they want to have the same control over their deaths that they have had over their lives.

While preparing advance medical directives and choosing hospice and palliative care over aggressive treatment have become mainstream options, physician-assisted dying remains taboo for many people. Voters in Massachusetts will consider a ballot initiative in November on a law nearly identical to those in the Pacific Northwest, but high-profile legalization efforts have failed in California, Hawaii and Maine.

Oregon put its Death With Dignity Act in place in 1997, and Washington’s law went into effect in 2009. Some officials worried that thousands of people would migrate to both states for the drugs.

“There was a lot of fear that the elderly would be lined up in their RVs at the Oregon border,” said Barbara Glidewell, an assistant professor at Oregon Health and Science University.

That has not happened, although the number of people who have taken advantage of the law has risen over time. In the first years, Oregon residents who died using drugs they received under the law accounted for one in 1,000 deaths. The number is now roughly one in 500 deaths. At least 596 Oregonians have died that way since 1997. In Washington, 157 such deaths have been reported, roughly one in 1,000.

In Oregon, the number of men and women who have died that way is roughly equal, and their median age is 71. Eighty-one percent have had cancer, and 7 percent ALS, which is also known as Lou Gehrig’s disease. The rest have had a variety of illnesses, including lung and heart disease. Statistics in Washington are similar.

There were fears of a “slippery slope” – that the law would gradually expand to include those with nonterminal illnesses or that it would permit physicians to take a more active role in the dying process itself. But those worries have not been borne out, experts say.

n both Oregon and Washington, the law is rigorous in determining who is eligible to receive the drugs. Two physicians must confirm that a patient has six months or less to live. And the request for the drugs must be made twice, 15 days apart, before they are handed out. They must be self-administered, which creates a special challenge for people with ALS. Wesley said he would find a way to meet that requirement, perhaps by tipping a cup into his feeding tube.

The reasons people have given for requesting physician-assisted dying have also defied expectations.

Dr. Linda Ganzini, a professor of psychiatry at Oregon Health and Science University, published a study in 2009 of 56 Oregonians who were in the process of requesting physician-aided dying.

“Everybody thought this was going to be about pain,” Ganzini said. “It turns out pain is kind of irrelevant.”

At the time of each of the 56 patients’ requests, almost none of them rated pain as a primary motivation. By far the most common reasons, Ganzini’s study found, were the desire to be in control, to remain autonomous and to die at home.

“It turns out that for this group of people, dying is less about physical symptoms than personal values,” she said.

There are no studies of the psychological effect of having a prescription on hand, but experts say many patients who have received one find comfort in knowing they have or can get the drugs. About a third of those who fill the prescription die without using it.

“I don’t know if I’ll use the medication to end my life,” Wesley said. “But I do know that it is my life, it is my death, and it should be my choice.”

Dr. Marcia Angell: Ballot question to allow physician aid in dying respects patient wishes

By Dr. Marcia Angell
Boston.com
July 31, 2012

On Nov. 6, in addition to weighing in on the crucial political contests, Massachusetts voters will decide whether physicians may provide a dying patient with medication to bring about an earlier, more peaceful death if the patient chooses. On the ballot will be a Death with Dignity Act that is virtually identical to the law that has been in effect in Oregon for many years. If it passes, it will legalize physician-assisted dying, sometimes called aid in dying. (These terms are favored over the older term, physician-assisted suicide, because they distinguish it from the typical suicide in which a healthy person chooses death over life; here the patient is near death from natural causes anyway, and merely chooses the timing and manner of an inevitable death.)

There are a host of safeguards. First, the Act applies only to adults who are able to make their own decisions. It cannot be used through advance directives, nor by people with limited decision-making capacity. Second, the patient must have a terminal illness, with a life expectancy of no more than six months, as determined by at least two physicians. In addition, the patient must make two oral requests for medication to hasten death, separated by at least 15 days, and one written request, with two witnesses. By definition, the patient must be capable of swallowing the medication — usually barbiturates dissolved in a full glass of liquid — which ensures that it is voluntary. The law does not permit euthanasia, that is, the injection of a lethal medication by a physician or anyone else. If a physician believes a psychiatric condition is impairing the patient’s judgment, the doctor must refer him or her to a psychiatrist or other counselor. No physician is required to participate in assisted dying; he or she may refuse for any reason whatsoever. This is a choice, not a requirement, for both patients and physicians.

Last December, at its interim meeting, the Massachusetts Medical Society reaffirmed its long-standing opposition to physician-assisted dying — finding it “inconsistent with the physician’s role as healer and health care provider,” in the words of President Lynda Young. I will here discuss this and other arguments often made by physician opponents, and explain why I believe they are wrong, both medically and ethically.

Physicians are only healers. This sees the physician’s role too narrowly and abstractly. Yes, it is all very well to say that physicians should be healers, but suppose healing is not possible? When death is imminent and dying patients find their suffering unbearable, then the physician’s role should shift from healing to relieving suffering in accord with the patient’s wishes. This is not a matter of life versus death, but about the manner of dying, and it’s not primarily about doctors, but about patients.

Physicians should never participate in taking life. Doctors who believe this do not usually object to withdrawing life-sustaining treatment, such as a mechanical ventilator, if requested by a patient or proxy. But they believe that writing a prescription is more active, hence unethical. Here again, this argument focuses too much on physicians and not enough on patients. If we look instead at the patient’s role, we see that assisted dying requires purposeful actions on the part of the patient, whereas a mechanical ventilator could be disconnected from an unconscious patient. Even some doctors who believe assisted dying is sometimes warranted think they should not write the prescription, but outsource it to someone else. This is a form of abandonment, in which doctors prize their self-image above the patient’s needs.

Patients who request assisted dying may be suffering from treatable depression. The diagnosis of depression is difficult because the symptoms overlap with those of terminal illness, and dying naturally produces sadness. Moreover, there are no good studies of the effectiveness of therapy in this setting. Nevertheless, the act requires physicians to refer patients for counseling if they believe a patient’s judgment is impaired by depression or another psychiatric condition, and that is a common reason doctors give for denying requests in Oregon.

Permitting assisted dying will put us on a “slippery slope,” leading to abuses, such as using the law for patients who are not terminally ill or who are especially vulnerable — for example, the uninsured. The best answers come from Oregon, where the law has been used sparingly (most requests are refused) and exactly as intended. (For details, see the Oregon Health Authority’s Division of Public Health reports.) Assisted dying there has accounted for 596 deaths over 14 years, only 0.2 percent of all deaths in the most recent year. Most patients were suffering from metastatic cancer, and the prognosis was clear. Far from being vulnerable, they were relatively affluent, well-educated, and well-insured, and nearly all were receiving hospice care at the time of their request. About a third who requested medication did not use it, but kept it at hand because it provided peace of mind. No law works absolutely perfectly, but this one seems to come about as close as possible.

Good palliative care can relieve all suffering, so permitting assisted dying is unnecessary. Probably most dying patients, even when suffering greatly, would choose to live as long as possible. That courage and grace should be protected and honored, and we should put every effort into treating their symptoms. (Palliative care in Oregon is among the best in the country.) But not all suffering can be relieved. Most pain can, but other symptoms can be harder to deal with — symptoms such as weakness, loss of control of bodily functions, shortness of breath, and nausea — and the drugs to treat them often produce side effects that are as debilitating as the problems they treat. Even worse for many patients is the existential suffering. They know that their condition will grow worse day after day until their deaths, that their course is inexorably downhill, and they find it meaningless to soldier on. Why should anyone — the state, the medical profession, or anyone else — presume to tell someone else how much suffering they must endure while dying? Doctors should stand with their patients, not against them.