DiversityNursing Blog

By ELIZABETH A. HARRIS

The police were banging on the doors and the windows of her home while she cowered in the closet, a 17-year-old girl recounted. She remembered clutching her phone, crying, calling her mother.

“I was scared,” she wrote of the experience.

It may sound like a drug raid, or the climax of a movie. But in fact, the police, along with representatives of Connecticut’s Department of Children and Families, had come to take the girl for chemotherapy.

Do you think she has the right to refuse chemotherapy?

The girl, identified in court papers as Cassandra C., learned that she had Hodgkin’s lymphoma in September. Ever since, she and her mother have been entangled in a legal battle with the state of Connecticut over whether Cassandra, who is still a minor, can refuse the chemotherapy that doctors say is likely to save her life. Without it, the girl’s doctors say, she will die.

“It’s poison,” Cassandra’s mother, Jackie Fortin, said of chemotherapy in an interview on Friday. “Does it kill the cancer? I guess they say it does kill the cancer. But it also kills everything else in your body.”

Ms. Fortin continued, “It’s her body, and she should not be forced to do anything with her body.”

Doctors said in court documents that they had explained to Cassandra that while chemotherapy had side effects, serious risks were minimal.

On Thursday, Connecticut’s Supreme Court ruled that Cassandra had had the chance to show at trial that she was a “mature minor,” competent to make her own medical decisions, but had failed to do so. And so the chemotherapy treatments, which had already begun, will continue.

Cassandra was a healthy, artistic 16-year-old before the illness was diagnosed, her mother said. She liked to paint and draw, mostly abstract pieces, but also cartoons and silly things. She had a paper route and a retail job. She had a tattoo on her back of the character Simba from “The Lion King,” the namesake of her cherished, yellow tabby cat. She had been home-schooled since the 10th grade.

Then she found a lump on the right side of her neck. She went to her pediatrician, and after rounds of tests that dragged on for months, doctors at Connecticut Children’s Medical Center in Hartford told her she had Hodgkin’s lymphoma. According to court documents, her doctors said that with chemotherapy, and sometimes radiation, patients had an 85 percent chance of being disease-free after five years.

Ms. Fortin, of Windsor Locks, near Hartford, said that she and her daughter had wanted a second opinion and a fresh battery of tests. They had begun looking for a new team of doctors to verify the diagnosis, and hoped to find alternatives to chemotherapy.

But the state said in court documents that Ms. Fortin had not brought her daughter to some medical appointments and was “not attending to Cassandra’s medical needs in a timely basis.”

The Department of Children and Families took temporary custody of the girl in late October 2014. Two weeks later, she was allowed to go home, so long as she underwent chemotherapy. But after two days of treatment, she ran away from home.

“Although I didn’t have any intention of proceeding with the chemotherapy once I returned home, I endured two days of it,” Cassandra wrote in an essay published in The Hartford Courant this week. “Two days was enough; mentally and emotionally, I could not go through with chemotherapy.”

About a week after running away, Cassandra came home. In her essay, she wrote that she had returned because she was afraid her disappearance might land her mother in jail. In December, she was hospitalized.

“I was strapped to a bed by my wrists and ankles and sedated,” she wrote in the essay, which was accompanied by a photo of her in the hospital. “I woke up in the recovery room with a port surgically placed in my chest. I was outraged and felt completely violated.”

“How long is a person actually supposed to live, and why?” she wrote. “I care about the quality of my life, not just the quantity.”

In a statement this week, the Department of Children and Families said it preferred to work with families, not compel them, but had no choice in some cases.

“When experts — such as the several physicians involved in this case — tell us with certainty that a child will die as a result of leaving a decision up to a parent,” the statement said, “then the Department has a responsibility to take action.”

Cassandra’s legal battle is not unprecedented, but it is unusual, said Dr. Paul S. Appelbaum, director of the Division of Law, Ethics, and Psychiatry at Columbia University College of Physicians & Surgeons.

“Nobody likes to overrule a parent and a child, particularly when they are in agreement,” he said.

Courts tend to be cautious about ordering treatment over a patient’s objections, Dr. Appelbaum said, and whether they do so often involves several factors, including the seriousness of the condition, the child’s maturity, and concern about whether the child’s opinions are being influenced by a parent or other third party. Several of those variables appear to have figured in this case, he said.

But Ms. Fortin’s lawyer, James P. Sexton, said that Cassandra was only months shy of her 18th birthday, when the decision about her care would be hers to make. By then, the chemotherapy will most likely be over.

Today she is confined to the hospital. Her communications are limited, as are her visits with her mother. Mr. Sexton said the family would continue to fight in court.

Source: www.nytimes.com

By Dennis Thompson

Already-strong public support for right-to-die legislation has grown even stronger in the days since the planned death of 29-year-old brain cancer patient Brittany Maynard, a new HealthDay/Harris Poll has found.

An overwhelming 74 percent of American adults now believe that terminally ill patients who are in great pain should have the right to end their lives, the poll found. Only 14 percent were opposed.

Broad majorities also favor physician-assisted suicide and physician-administered euthanasia.

Only three states -- Oregon, Washington and Vermont -- currently have right-to-die laws that allow physician-assisted suicide.

"Public opinion on these issues seems to be far ahead of political leadership and legislative actions," said Humphrey Taylor, chairman of The Harris Poll. "Only a few states have legalized physician-assisted suicide and none have legalized physician-administered euthanasia."

People responded to the poll in the weeks after Maynard took medication to end her life in early November.

Maynard moved from California to Oregon following her diagnosis with late-stage brain cancer so she could take advantage of the state's "Death With Dignity Act." Her story went viral online, with a video explaining her choice garnering nearly 11.5 million views on YouTube.

A "poster child for the movement," Maynard helped spark conversations that allowed people to put themselves in her shoes, said Frank Kavanaugh, a board member of the Final Exit Network, a right-to-die advocacy group.

"I think it is just a natural evolution over a period of time," Kavanaugh said of the HealthDay/Harris Poll results. "There was a time when people didn't talk about suicide. These days, each time conversations occur, people think it through for themselves, and more and more are saying, 'That's a reasonable thing to me.'"

The poll also found that:

• Support for a person's right to die has increased to 74 percent, up from 70 percent in 2011. Those opposed decreased to 14 percent from 17 percent during the same period.
• Physician-assisted suicide also received increased support, with 72 percent now in favor, compared with 67 percent in 2011. Opposition declined from 19 percent to 15 percent.
• Sixty-six percent of respondents said doctors should be allowed to comply with the wishes of dying patients in severe distress who ask to have their lives ended, up from 58 percent in 2011. Opposition decreased from 20 percent in 2011 to 15 percent now.

"The very large -- more than 4-to-1 and increasing -- majorities in favor of physician-assisted suicide, and the right of terminally ill patients to end their lives are consistent with other liberal social policy trends, such as support for same-sex marriage, gay rights and the decriminalization of marijuana, seen in the results of referendums and initiatives in the recent mid-term elections," Taylor said.

Support for the right-to-die movement cut across all generations and educational groups, both genders, and even political affiliation, the poll found.

Democrats tended to be more supportive of right-to-die legislation, but 56 percent of Republicans said they favor voluntary euthanasia and 63 percent favor physician-assisted suicide.

Kavanaugh was not surprised. "People think of this as a liberal issue. But I find that as I talk to [conservatives], you can appeal to them on the basis of 'get the government the hell out of my life,'" he said.

But the public is split over how such policies should be enacted, with 35 percent saying that the states should decide on their own while 33 percent believe the decision should be made by the federal government, the poll found.

"Most of the people I know in the field whose opinion I put stock in don't feel there's ever going to be federal movement on it," Kavanaugh said. "You're just going to have to suffer through a state-by-state process."

Kavanaugh does believe this overwhelming public support will result in steady adoption of right-to-die laws.

"I think this will become the ultimate human right of the 21st century, the right to die with dignity," he said. "There are good deaths and bad deaths, and it is possible to have a good death."

Despite increasing public support for assisted suicide, stiff opposition remains in some quarters.

"Assisted suicide sows confusion about the purpose of life and death. It suggests that a life can lose its purpose and that death has no meaning," Rev. Alexander Sample, archbishop of the Archdiocese of Portland in Oregon, said in a pastoral statement issued during Maynard's final days.

"Cutting life short is not the answer to death," he said. "Instead of hastening death, we encourage all to embrace the sometimes difficult but precious moments at the end of life, for it is often in these moments that we come to understand what is most important about life. Our final days help us to prepare for our eternal destiny."

Todd Cooper, a spokesman for the Portland archdiocese, said the debate over assisted suicide touches him on a very deep level because of his wife, Kathie.

About 10 years ago, she also was diagnosed with terminal brain cancer. She endured two brain surgeries, two years of chemotherapy and six weeks of radiation therapy, and remains alive to this day.

"If she'd given up the fight for life, she wouldn't be here," Cooper said. "That doesn't necessarily happen in every case, but it gives hope for those who struggle to the very end."

source: www.medicinenet.com

By Brittany Maynard

Editor's note: Brittany Maynard is a volunteer advocate for the nation's leading end-of-life choice organization, Compassion and Choices. She lives in Portland, Oregon, with her husband, Dan Diaz, and mother, Debbie Ziegler. Watch Brittany and her family tell her story at www.thebrittanyfund.org. The opinions expressed in this commentary are solely those of the author.

(CNN) -- On New Year's Day, after months of suffering from debilitating headaches, I learned that I had brain cancer.

I was 29 years old. I'd been married for just over a year. My husband and I were trying for a family.

Our lives devolved into hospital stays, doctor consultations and medical research. Nine days after my initial diagnoses, I had a partial craniotomy and a partial resection of my temporal lobe. Both surgeries were an effort to stop the growth of my tumor.

In April, I learned that not only had my tumor come back, but it was more aggressive. Doctors gave me a prognosis of six months to live.

Because my tumor is so large, doctors prescribed full brain radiation. I read about the side effects: The hair on my scalp would have been singed off. My scalp would be left covered with first-degree burns. My quality of life, as I knew it, would be gone.

After months of research, my family and I reached a heartbreaking conclusion: There is no treatment that would save my life, and the recommended treatments would have destroyed the time I had left.

I considered passing away in hospice care at my San Francisco Bay-area home. But even with palliative medication, I could develop potentially morphine-resistant pain and suffer personality changes and verbal, cognitive and motor loss of virtually any kind.

Because the rest of my body is young and healthy, I am likely to physically hang on for a long time even though cancer is eating my mind. I probably would have suffered in hospice care for weeks or even months. And my family would have had to watch that.

I did not want this nightmare scenario for my family, so I started researching death with dignity. It is an end-of-life option for mentally competent, terminally ill patients with a prognosis of six months or less to live. It would enable me to use the medical practice of aid in dying: I could request and receive a prescription from a physician for medication that I could self-ingest to end my dying process if it becomes unbearable.

I quickly decided that death with dignity was the best option for me and my family.

We had to uproot from California to Oregon, because Oregon is one of only five states where death with dignity is authorized.

I met the criteria for death with dignity in Oregon, but establishing residency in the state to make use of the law required a monumental number of changes. I had to find new physicians, establish residency in Portland, search for a new home, obtain a new driver's license, change my voter registration and enlist people to take care of our animals, and my husband, Dan, had to take a leave of absence from his job. The vast majority of families do not have the flexibility, resources and time to make all these changes.

I've had the medication for weeks. I am not suicidal. If I were, I would have consumed that medication long ago. I do not want to die. But I am dying. And I want to die on my own terms.

I would not tell anyone else that he or she should choose death with dignity. My question is: Who has the right to tell me that I don't deserve this choice? That I deserve to suffer for weeks or months in tremendous amounts of physical and emotional pain? Why should anyone have the right to make that choice for me?

Now that I've had the prescription filled and it's in my possession, I have experienced a tremendous sense of relief. And if I decide to change my mind about taking the medication, I will not take it.

Having this choice at the end of my life has become incredibly important. It has given me a sense of peace during a tumultuous time that otherwise would be dominated by fear, uncertainty and pain.

Now, I'm able to move forward in my remaining days or weeks I have on this beautiful Earth, to seek joy and love and to spend time traveling to outdoor wonders of nature with those I love. And I know that I have a safety net.

I hope for the sake of my fellow American citizens that I'll never meet that this option is available to you. If you ever find yourself walking a mile in my shoes, I hope that you would at least be given the same choice and that no one tries to take it from you.

When my suffering becomes too great, I can say to all those I love, "I love you; come be by my side, and come say goodbye as I pass into whatever's next." I will die upstairs in my bedroom with my husband, mother, stepfather and best friend by my side and pass peacefully. I can't imagine trying to rob anyone else of that choice.

What are your thoughts about "death with dignity"?

Source: CNN