As a teenager, Ellen watched her mother endure a decadelong battle with breast cancer, shrinking to 65 pounds and growing so weak she had to be carried around. Ellen vowed that she herself would not die that way.
“I always just felt it was a horrifying and difficult way to go, for me,” said Ellen, a 73-year-old from Boston.
When Ellen was diagnosed with breast cancer at 49, she fought the disease into remission, only to see it return. Two years ago, she developed a rare gastrointestinal cancer that spread.
Now receiving hospice care, she is putting her affairs in order, finishing up some genealogy work, and making plans to vote in November for a ballot initiative that would give a terminally ill patient the option to request a prescription for a lethal dose of a drug.
“What I like is the option to have some help. It makes it easier to deal with the fear of the difficult things I’ve seen,” said Ellen, who requested that her last name be withheld to protect her privacy.
Although the “Death with Dignity” ballot question has generated relatively little fanfare, the decision Massachusetts voters will confront in November has far-reaching ethical, medical, and personal repercussions.
Since 1997, the option — in which a patient may request a prescription and ingest medication to end his or her life — has been available in Oregon. Washington voters passed a similar initiative in 2008.
The initiative would allow terminally ill patients with six months or less to live to request from their doctor a prescription for a lethal dose of a drug. Doctors do not have to offer the option at all, and patients must make three requests, two verbal and one written. They must self-administer the drug, which would be ingested. The patients must be deemed capable of making an informed decision.
As Massachusetts voters prepare to decide whether to offer such an option, local and national organizations have taken sides, with groups such as the AIDS Action Committee, the National Association of Social Workers, and the American Civil Liberties Union of Massachusetts supporting the initiative. Meanwhile, the Catholic church, the Massachusetts Medical Society, many advocates for people with disabilities, and the Hospice & Palliative Care Federation of Massachusetts oppose it.
For some, the issue is intensely personal.
Deborah Anne McGill, 48, of Boxford, has come to terms with the idea that she will die young. She has battled ovarian cancer for almost five years, a span that physicians warned her early on was the average life expectancy for someone diagnosed with her type of cancer.
Her spirits are bright, but McGill tires easily and she no longer has the strength to work full time. Although she has recalibrated her expectations about the length of her life, she is also hopeful. She just completed a clinical trial and is looking for the next one.
She opposes the initiative that one day could help patients like her end their lives. Although a prescription would be only an option, McGill thinks it could easily be abused, and worries that the law would not afford sufficient protection to the vulnerable population that would be making the requests.
Critics have a variety of reasons for opposing the initiative. Many object to the way the proposed legislation is written. For example, a mental health evaluation by a specialist would not be required unless a physician determines one is necessary. Doctors’ predictions of how much time people have left are not always accurate; sometimes people can live for months or years longer. Some opponents reject the notion that a physician should be able to offer such an option at all.
“I’m really grateful my doctors do not talk about it,” said McGill, who teaches English as a second language part time but devotes much of her life to helping others, working as a hospice volunteer, providing literacy tutoring, and leading a cancer support group. She is especially worried that as currently written, the law doesn’t provide enough protections for patients or penalties for those who might take advantage of them.
Supporters, however, say that “Death with Dignity” is an option that may be appropriate for some people.
Dr. Lewis Cohen, a psychiatrist and supporter of the initiative who has long studied end-of-life issues, has faced the question in his personal life. His mother-in-law, Myra Berzoff, who passed away Saturday night, was a charismatic 91-year-old suffering from advanced emphysema. As her health declined, she talked to Cohen about the way she wanted to die and even asked if he would help her end her life, if she requested it.
Cohen said that initially it was “jolting” to hear the request; his first instinct as a doctor and psychiatrist was to think about possible problems, like depression. He made it clear he could not fulfill her request. But he thinks policy should change to take into account the thoughtful, considered decisions of those who wish to control the end of their life.
“I have, like most physicians, a bias to reflexively begin to think this is suicidal behavior on their part,” he said. “What I have begun to develop is in fact an appreciation that there are a lot of people out there that if you put yourselves in their shoes, it actually does make sense what they’re saying and it’s high time we dropped our biases and prejudices and listened to what they had to say.”
Nate Lamkin, a social worker at Hospice of the North Shore & Greater Boston, said he opposes the initiative because access to palliative care and hospice are not widespread enough and it would be premature to offer patients medication that could end their lives before improving other services.
“It’s not uncommon for any of us on the team to hear people expressing a wish to die, and our nurses regularly get asked by people who are just getting started with us and in a lot of pain,” he said. “The vast majority of the time, when someone’s symptoms are brought under control, they withdraw that request. . . . Even patients who are terminally ill and facing their own death within the next weeks or months, if they’re physically comfortable they can have a lot of meaningful time with loved ones.”
It is also unclear how doctors, hospitals and hospices will respond should the initiative pass. Dr. Britain Nicholson, chief medical officer at Massachusetts General Hospital, said that last month nurses, physicians, and others at Partners HealthCare began meeting to examine basic questions about the initiative so they would be prepared should it pass. For example, he said, what programs might they need to put in place to refer patients if physicians do not want to offer the prescription?
Statistics kept in Oregon and Washington show that very few people go through the process to get a prescription. Many people who receive the prescriptions never take the drugs, dying naturally of their underlying disease. Oregon is now known for having excellent end-of-life care, in addition to the option for physicians to prescribe drugs to end life.
Dr. Susan Tolle, a physician at Oregon Health & Science University, said that although she has not taken a stand on whether having the option is good or bad, many assume too quickly that what happened in Oregon — improvements in end-of-life care — will simply take place if similar initiatives are passed in other states.
“We chose to take this opportunity to push harder, to improve end-of-life care,” Tolle said. “That does not mean that will automatically happen in Massachusetts.”Carolyn Y. Johnson can be reached at email@example.com. Follow her on Twitter @carolynyjohnson.