Making personal and public choices on dying

Enterprise file photo — Marcello Iaia

Hedi McKinley, a social worker who writes a column, “Mental health notes,” for The Enterprise, will speak at a forum on April 16 on end-of-life issues.

Eleanor Aronstein watched her mother die of ovarian cancer; it was a slow and painful death.

“She was much too young. She suffered for 11 months,” said Aronstein. “If my mother had been a dog, we would have euthanized her…I was powerless to do anything about it.”

Her mother died in the 1970s. “You didn’t talk about death in those days,” she said. “Kübler-Ross started the conversation,” she said, referring to Elisabeth Kübler-Ross who wrote about the five stages of grief in her 1969 book, “On Death and Dying,” sparking national discussion.

Aronstein, now 76, a retired teacher living in Schenectady, has since become involved in end-of-life issues and has organized a forum on the topic for next Thursday, April 16. The program is being put on by Final Exit Network members of which she is one.

The network, by its own description, sets out these guiding principals: “We hold that mentally competent adults who suffer from a fatal or irreversible physical illness, from intractable physical pain, or from a constellation of chronic, progressive physical disabilities have a basic human right to choose to end their lives when they judge the quality of their life to be unacceptable.”

The organization was founded by a British journalist, Derek Humphry. He wrote the book, “Jean’s Way,” after his wife, Jean Humphrey, who suffered from terminal breast cancer, ended her life on March 29, 1975. He then wrote “Final Exit,” a suicide handbook, in 1991, and currently serves as advisor to the Final Exit Network. Charges have been brought against members of the Final Exit Network in cases in Minnesota, Georgia, and Arizona — all involving assisted suicide.

“He cut short his wife’s suffering with her approval,” said Aronstein of Humphry. “He said, ‘This is not a crime; this is an act of compassion.’”

“The Conversation”

Hedi McKinley, a social worker who practices in Albany and lives in Altamont, met Humphry when he was speaking in Albany and stayed overnight at her home. “He was very impressive,” she said.

McKinley will be speaking at the April 16 event on “Having ‘The Conversation’ with Your Family and Your Doctor.”

“Frequently children don’t want to discuss death with their parents,” she said. “It’s a very powerful thing to say to your son or daughter, ‘This is what I want when I’m dying.’”

McKinley went on, “The doctors are worse than the children. My doctor is always telling me, ‘You’ll live to 100.’”

McKinley will be 95 on April 15 and leads an active life. “It’s in the genes,” she says. Her father died at age 93. “Up to his death, he was like me,” she said. “He walked straight and he walked fast. And he ate well.”

She attributes her father’s vigor to his history. An Austrian, he fought in World War I and was taken prisoner on the Russian front in 1914. He starved in a Siberian prison camp until he was released after the war, in 1918. He then walked from Siberia home to Austria. “It took him two years,” McKinley said. “I did not have ‘The Conversation’ with my father.”

Asked at what age parents should talk to their children about end-of-life wishes, McKinley said, “I might have an automobile accident tomorrow. Why wait till you’re old? When your children are grown-up, have it.”

It’s best to put desires in writing, she said. “And then review it every 10 years.”

Aronstein describes a “living will” as “a document signed by you, a witness, and a lawyer that states what you want and what you don’t.” The list can include a ventilator, feeding tubes, or artificial nutrition and hydration.

She advises the person given power of attorney has to be “strong enough to stand up to other family members or doctors who may want invasive procedures….You have to make sure it’s somebody that has guts.”

The most important thing to talk about, McKinley said, is this: “Do you want to be kept alive at any cost? Some will say, ‘No matter what, keep me going.’ Others may say, ‘If I cannot leave the hospital the way I went in, let’s not use drastic measures. Let me go.’”

McKinley stressed that it is important to have the talk “before your children are standing around your hospital bed; they can disagree” if the parent has not been clear.

In addition to having what is called “a living will,” a person should name a health-care proxy who is entrusted with making decisions if the person is no longer able to communicate.

“I’ve had one for over 20 years,” said McKinley. “I have this conversation with anyone who will listen.”

McKinley said, in her practice as a social worker, “These things come up all the time…I don’t pussyfoot around.”

She extolled the work of Compassion & Choices, another not-for-profit group, first called the Hemlock Society, working to improve rights and choices for people at the end of their lives. The group offers free end-of-life consultations for dying patients and their families, by phone and in person, and works through the courts to stop life-sustaining treatments for terminally ill patients who want to die.

“They will help you in every way, including as you are dying — they will send someone to sit with you and hold your hand,” said McKinley.

She anticipates a session on April 16 where the speakers will answer questions and concerns from the audience. “We really want people to ask questions and voice their concerns,” said McKinley. “We’re not so much preaching to them,” she stressed, but rather serving as a resource.

“A human rights issue”

Aronstein anticipates there may be activists in a crowd she hopes will reach two score.

She wants to “bring to the fore” for the public the reality that “we’re all going to die,” said Aronstein.

“Do we want to die in a hospital, hooked up to tubes?” she asked, answering herself, “I don’t think so.”

Three states — Oregon first, in 1997, Washington in 2009, and Vermont in 2013 — have passed laws to allow lethal prescriptions for terminally ill adults. Currently, in New Mexico, following a judge’s 2014 decision, terminally ill patients have a constitutional right to get help in dying, although the state’s attorney general is appealing the ruling. Finally, in Montana, a 2009 case established protection for doctors who write lethal prescriptions requested by terminally ill patients.

There is currently a bill in both the New York State Senate and Assembly called the End-of-Life Options Act “to make aid in dying an open, legitimate option for terminally ill individuals in New York State.”

The bill gives this justification: “The medical option of aid in dying will improve end-of-life care overall and will benefit those who choose to access it.”

Aronstein encourages supporters to write to their legislators. She concedes getting the bill passed into law is “a long shot.”

“I am hoping, once it makes an appearance, it will be less shocking,” Aronstein said. “Doctors can help you,” she said.

Aronstein started the Capital District affiliate for the Final Exit Network and is also a member of Compassion & Choices. She notes that the network has physicians on its board and asserts, “No one is suggesting people who can recover should be killed.”

She also said, “The Final Exit Network works within the law, providing support to those who are suffering and whose need is immediate. We do not charge but you must be a member to access services.”

Aronstein is putting together a PowerPoint presentation for April 16 on “how our society deals with death….It’s a topic nobody wants to face.” She adds, “To lighten it, I’ve got some cartoons to show.”

Aronstein goes on, “I will talk about the death-with-dignity movement and what individuals can do to foster change.”

She concluded, “This is a human rights issue,” likening it to a long list, starting with the women’s rights movement gaining suffrage in 1920, the civil rights movement of the 1960s, the rights movement for people with disabilities in the 1990s, and the recent gay rights movement.

“There will always be detractors — religious fundamentalists of any stripe…” Aronstein said, concluding, “People have a right to autonomy over their own body. The government should not interfere. They have a 21st-Century right to die with dignity.”

****

The forum on end-of-life issues, sponsored by the new Final Exit Network affiliate for the Capital District, will be held on Thursday, April 16, at 2:30 p.m. at the Niskayuna Library at 2400 Nott Street East. The free session is open to all. For more information, call 459-0853.

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