Nov 30, 2014 6 min read

The decision of Brittany Maynard, the 29-year-old Californian with terminal brain cancer, to end her life on Nov. 1 in Oregon has sparked a national debate on whether states should offer terminally ill patients the right to die on their own terms.

Helping dying patients end their lives, which advocates call “aid in dying,” is legal in five states: Vermont, Oregon, Montana, Washington and New Mexico.

But the conversation about Death with Dignity gets more complicated when it comes to Alzheimer’s disease.

Death with Dignity laws generally require a person to be diagnosed with a terminal illness that will lead to death within six months, and for the person to be capable of making health care decisions.

That’s a conundrum for Alzheimer’s patients, says Jena Johnson of Compassion & Choices, a nonprofit end-of-life choice advocacy group. Given the usual course of dementia, they aren’t mentally competent to make a decision about ending life by the time they’re six months away from dying.

“Dementia patients usually do not meet (Death with Dignity) criteria,” said Johnson. “Usually, when a dementia patient is well enough to consider this option, he or she is still healthy, mobile and enjoys their days.”

Two Pennsylvania legislators recently entered bills into the state House and Senate proposing a law modeled after Oregon’s Death with Dignity Act, which allows terminally ill adults to administer a lethal dose of medication.

Sen. Daylin Leach, D-Montgomery, has introduced Death With Dignity legislation every year since 2008, and state Rep. Mark Rozzi, whose father died from cancer, introduced a bill last month.

Leach decided to introduce the legislation after watching family members die of cancer. He also was motivated following the arrest of a Philadelphia woman, Barbara Mancini, 58, who was charged with assisting suicide after giving her 93-year-old terminally ill father morphine in February 2013.

“You find yourself asking, ‘What would I want in that situation?'” said Leach. “This is not suicide. It’s about people who are dying and how they want to die. The end of life is an intensely personal time. There is no more profound decision that you will make, and under Pennsylvania law, you have no say in how you die or when you die.”

The bills won’t come up for a vote before the end of the legislative session in December, but Leach plans to introduce his again next year.

And Leach acknowledged that his bill probably won’t help Alzheimer’s patients.

“We want to help a lot of people, but I’m not sure we can help everybody,” said Leach. “Alzheimer’s is a tricky thing. By the time they’re at the point where they want to take their own life, they have difficulty communicating their wishes.”

According to a 2013 Gallup poll, public support for aid in dying has gained traction – depending on how it’s worded. The poll showed that 70 percent of Americans agreed that doctors should be able to “end a patient’s life by some painless means” at the patient’s request. But only 51 percent were in favor if it was called doctor-assisted suicide.

Opponents of aid in dying, including the Catholic Church, argue that ending a life is morally wrong and that patients might be coerced to die early so that they are not a financial and emotional burden. Assisted suicide, they contend, degrades the value of human life.

Assisted suicide and Alzheimer’s first gained national attention in 1990, when Jack Kevorkian, a Michigan pathologist, assisted in the suicide of Janet Adkins, a 54-year-old woman diagnosed with Alzheimer’s.

The Alzheimer’s Association issued a statement that said, “We believe that hers was a very personal decision; however, we must also affirm the right to dignity and life for every Alzheimer’s patient and don’t condone suicide.”

Clay Jacobs of the Alzheimer’s Association of Greater Pennsylvania points out that in Pennsylvania, as in most states, assisting a loved one or a friend to hasten their death remains illegal.

“Our focus is to affirm the right to dignity and life for every individual and to supply support and services for them and their families from the beginning. Taking a person’s life is against the law,” said Jacobs. “We support palliative care, which is not equivalent to assisted suicide. When treatment is withheld or withdrawn, the intent is not to end the life, but to unburden the person from being hooked up to machines and allow a natural death.”

Sean Crowley of Compassion & Choices recommends that people add a dementia provision to their advanced directive and living will to specify what life-sustaining treatment, food or fluids they want or do not want to receive if they develop severe dementia.

Compassion & Choices’ Johnson said not all terminally ill patients who are prescribed life-ending medication take it.

Of the 122 Oregon residents who were given a life-ending prescription in 2013, 71 chose to use it.

A legal alternative to physician-assisted suicide suggested by aid in dying advocates is Voluntary Stopping of Eating and Drinking (VSED), the practice of giving up food and drink in order to hasten one’s death.

New Jersey recently passed a bill that gives terminally ill residents the right to obtain a prescription to end their lives, and other states are considering similar legislation.

“It’s a decision people should be able to make for themselves,” said Leach. “You should have some say in how you die. It is a basic human right.”