The Life Matters Media Newswire aims to serve as a comprehensive portal of all news related to end of life decision making and care. We aggregate stories from other media outlets in one place- here, where you can access them easily. We also strive to produce original content covering stories we feel are receiving scant attention.
Cassandra C., the 17-year-old cancer patient resisting chemotherapy, does not have the right or maturity to refuse life-saving medical treatments, the Connecticut Supreme Court ruled Thursday. She will continue to receive chemotherapy and remain in state custody.
The court upheld a lower court’s ruling allowing the girl to be forced to undergo treatment for Hodgkin’s Lymphoma, according to The Hartford Courant. The decision was unanimous. Her doctors argued that she will die without proper medical care.
Cassandra C., as identified in court documents, opposes chemotherapy treatments because she “would not put poison into her body,” according to her mother, Jackie Fortin. She fears chemotherapy will do more harm to her body than the cancer.
The controversial case made headlines across the U.S., with many medical ethicists arguing the state gave precedence to medicine over parent and child. Cassandra turns 18 in September, when she will be able to make her own medical decisions.
“The general rule for adults is that you can say no to treatment no matter how life-saving it may be,” said Joshua Michtom, one of the teen’s attorneys. “You can say no even to helpful treatment. If she were 18, no matter what anyone said, it would be her choice to make.”
The hearing lasted one hour. The court agreed to an expedited ruling involving the “mature minor doctrine,” which holds that some minors possess the maturity to make their own medical decisions, even if younger than 18. Several other states, including Illinois, have held that minors have the right to forego medical treatments.
Fortin and her lawyers said they are considering their next step after losing the case, The Associated Press reports.
A 17-year-old girl is suing the State of Connecticut for forcing her to undergo unwanted cancer treatments that may cure her disease.
Cassandra C., recently diagnosed with Hodgkin’s Lymphoma, resisted chemotherapy treatments because she “would not put poison into her body,” according to her mother, Jackie Fortin.
After doctors with Connecticut Children’s Medical Center in Hartford (CCMC) pushed Cassandra to undergo unwanted treatments, she ran away from home. Cassandra was returned to CCMC after the Department of Children and Families (DCF) was notified. According to court documents, a trial court ordered that she be removed from her home and for DCF to make all necessary medical decisions on her behalf.
“She has been backed up against a wall,” Fortin told NBC Connecticut. “She has always, even years ago, said that if ever she has cancer, she would not put poison into her body.”
Cassandra will turn 18 in September, when she will be able to make her own medical decisions. She fears chemotherapy will do more harm to her body than the cancer.
Michael Taylor, a lawyer representing Cassandra, argues she is old enough to make her own medical decisions without government interference. “When you think about what freedom means,” he said, “a big part of it means being able to say to the government, ‘You can’t tell me what to do with my own body.’ “
The State Supreme Court will hear arguments Jan. 8. The court agreed to an expedited ruling involving the “mature minor doctrine,” which holds that some minors possess the maturity to make their own medical decisions, even if younger than 18, The Hartford Courant reports.
In an online video, Fortin claims Cassandra’s human and constitutional rights have been violated, because she has been forced to receive chemotherapy against her wishes and may face side-effects, including infertility. Fortin repeatedly denied influencing her daughter’s position.
“As required by law, Connecticut Children’s is currently working closely with the Department of Children and Families (DCF) in a matter concerning the provision of care for a particular patient currently under the custody of DCF. Later this week, the state Supreme Court will hear arguments concerning this very important case and we look forward to their involvement and guidance,” according to a CCMC statement sent to Life Matters Media. “Due to HIPAA regulations and out of courtesy for this patient and family members, we will not provide any additional information at this time.”
Ethicists Weigh Fortin’s Decision
Dr. Joel E. Frader, a Northwestern University bioethicist and palliative care pediatrician at Lurie Children’s Hospital in Chicago, argues this case cannot be easily divided between “right” and “wrong,” because maturity and age are relative.
Does she have the capacity to make this kind of decision? Why is she afraid of chemotherapy?
“Modern neuroscience suggests that full adult maturity probably does not come into play until approximately age 25— which of course raises all sorts of interesting policy issues. The state and the judicial system should focus on maturity, which is not so easily assessed,” he told LMM. “While we would have the legal responsibility to respect the wishes of a 19-year-old to refuse cancer treatment, we would also have the ethical duty to try to persuade a 19 year-old with Hodgkin’s Lymphoma to accept treatment, as more likely than not, she or he would survive and have a good quality of life.”
It would not be justified, he added, to use physical restraints to force treatments on a refusing patient.
Craig Klugman, Ph.D., a bioethicist and chair of the Department of Health Sciences at DePaul University in Chicago, said the case should hinge on Cassandra’s mental capacity and not her age.
“There are some very immature 17-year-olds and some very mature 17-year-olds. The questions we should be asking: What does she know about her disease condition? What does she know about the risks and benefits of treatment? Does she have the capacity to make this kind of decision? Why is she afraid of chemotherapy?” he told LMM. “Is there something that happens the morning of your 18th birthday where your brain matures? Absolutely not. Eighteen is an arbitrary number.”
Klugman called Jackie Fortin “courageous,” because she has chosen to honor her daughter’s wishes and not take the easy path.
“This is a mother who clearly loves her daughter, clearly supports her daughter, and the state is taking her right to decide away because she disagrees with the doctors,” he added. “They strapped Cassandra down to a table and forced treatment on her, even when she was resisting. The state is giving precedence to medicine over a parent and child.”
Aana Marie Vigen, Ph.D, an associate professor of Christian Social Ethics at Loyola University Chicago, is concerned that Cassandra has not been given proper support or accurate information about the disease, and she hopes an interdisciplinary medical team will help sort-out the crisis.
“What kinds of consults has the family had with social workers, chaplains, case managers, psychologists? An integrated approach, during relationship building or bioethics consult, can help head-off conflicts,” she told LMM. “It’s very sad that communication and trust have broken-down so much. The daughter refers to chemo as poison, but who has broken that down for her? Where is that coming from?”
Last Update: Jan. 7, 2015
Hundreds gathered at the Chicago Cultural Center to learn about and debate so-called “Death with Dignity” legislation on Saturday. The event, sponsored by nonprofit advocacy group Compassion & Choices, included a panel discussion and screening of How to Die in Oregon, a 2011 documentary exploring the state’s physician-assisted suicide law.
“This is not about a political stance, it’s too personal,” said Compassion & Choices President Barbara Coombs Lee during the panel discussion. “Seventy-four percent of people in the United States believe that folks should have the choice of aid-in-dying. This cuts across all population areas and demographics.”
Proponents of “Death with Dignity” legislation argue that such laws increase patient autonomy at the end of life, because the seriously ill can avoid suffering and die on their own terms. In Oregon, the first state to legalize physician-assisted suicide, terminally ill adults in their last months of life may self-administer a prescribed lethal dose of barbiturates.
“Brittany Maynard has changed everything. She has single-handedly transformed our whole movement from from one organization working actively in the field to a broad movement where all kinds of people are introducing bills and filing lawsuits and becoming active,” Lee added. “We will see bills advancing in many, many states. Her brazen visibility helped to increase momentum.”
Maynard, a 29-year-old newlywed, moved to Oregon from California to take advantage of the state’s “Death with Dignity” law and ingested a lethal dose of doctor-prescribed barbiturates in November. After being diagnosed with an aggressive brain tumor in January, she chose to become a national spokesperson for Compassion & Choices. News of her death made headlines across the world and sparked social media debate regarding hastening death.
“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,” Maynard wrote in an op-ed published by CNN shortly before her death. “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.”
Lee said many patients who fill their prescriptions for life-ending drugs never take them, because they only want the option of ending life. About 800 individuals have used the Oregon law to die since it was enacted in 1997.
But some disability rights groups, medical providers and religious organizations, including the Roman Catholic Church, maintain that physician-assisted suicide is unnecessary and endangers the most vulnerable patients.
No physician, bioethicist or critic of physician-assisted suicide was represented on the panel, moderated by Alison Cuddy, program director of the Chicago Humanities Festival.
The American Medical Association, the nation’s largest physician organization, strongly opposes physician-assisted suicide. The AMA maintains the policy is incompatible with physicians’ role as healer.
“It is understandable, though tragic, that some patients in extreme duress – such as those suffering from a terminal, painful, debilitating illness – may come to decide that death is preferable to life,” according to an AMA statement sent to Life Matters Media. “However, allowing physicians to participate in assisted suicide would cause more harm than good. Physician-assisted suicide is fundamentally incompatible with the physician’s role as healer, would be difficult or impossible to control, and would pose serious societal risks.”
According to a 2013 poll conducted by the New England Journal of Medicine, 67 percent of more than 1,700 of its U.S. readers were against physician-assisted suicide.
Members of Not Dead Yet, a national disability rights group that opposes all forms of aid-in-dying legislation, turned out to voice opposition to “Death with Dignity” and the documentary, which centers on a terminally ill cancer patient who ingested a lethal dose of doctor-prescribed drugs.
“We want to make sure the disability angle is included, because all too often, people with disabilities voices are not heard or are stigmatized. We are here to ensure the audience understands that not everybody with a terminal illness wants the right to death,” said Scott Nance, a member of the nonprofit.
Physician-assisted suicide is legal in four other U.S. states: Washington, Vermont, Montana and New Mexico.
Two weeks after the physician-assisted suicide of 29-year-old Brittany Maynard, an Intelligence Squared debate in New York explored whether the policy is compatible with the doctor’s healing role. The argument opposing physician-assisted suicide laws was judged the winning one by an audience gathered at the Kaufman Music Center Thursday night.
Maynard moved to Oregon to take advantage of the state’s “Death with Dignity” law before cancer caused her increased suffering. She was diagnosed with an aggressive glioblastoma in January; Maynard and her husband, Dan Diaz, left their home in California because that state does not allow physicians to prescribe barbiturates for terminally ill adults wishing to end their lives.
Physician-assisted suicide is legal in four other U.S. states: Washington, Vermont, Montana and New Mexico. Roughly 750 people in Oregon have used the law since it was enacted in 1997 to obtain and consume the lethal drugs.
Arguing for legalization were philosopher Peter Singer, a Princeton University professor of bioethics, and Andrew Solomon, an award-winning writer and Columbia University professor of clinical psychology.
Those opposing physician-assisted suicide were Baroness Ilora Finlay, a palliative care physician and president of the British Medical Association, and Dr. Daniel Sulmasy, the associate director of the University of Chicago’s MacLean Center for Clinical Medical Ethics.
Solomon supported physician-assisted suicide that was both regulated and easily accessible for the dying.
“Aiding dying needs to be tightly regulated, as any life or death matter does, from driving to surgery,” he said. “But while no one should be pressed into assisted dying, no one should be categorically denied that right. It’s about dignity.”
The wish to end life may be a rational decision for some seriously ill adults, Solomon argued, because it ends mental and physical deterioration. It also allows the opportunity to find “great meaning” in final moments, he said.
“From a non-theological point of view, it can be argued that the meaning people attach to that stage of life is an artifact of the human imagination,” Solomon added. “It’s not about suicide. Suicide responds to personal disintegration while this precludes it.”
Solomon argued that comfort care, such as palliative medicine or hospice, does not negate the need for “Death with Dignity” laws.
“It’s nothing short of medical arrogance to say that palliative care and hospice can adequately deal with the end of every life,” he said. “Hospice, in fact, can impose an authoritarian, hard, paternalistic view that the hospice way of dying is the only way.”
In response, Sulmasy said he strives to help the seriously ill die with dignity. However, he does not “want to help you or your daughter or your uncle commit suicide.” He called physician-assisted suicide “bad medicine and bad policy.”
“We strongly support the right of patients to refuse treatments and believe physicians have a duty to treat pain and other symptoms even to the point of hastening death,” Sulmasy said. “But empowering physicians to assist patients with suicide is quite another matter. Striking at the heart not just of medical ethics, but of ethics itself, because the very idea of interpersonal ethics depends upon our mutual recognition of each other’s equal independent worth, the value that we have simply because we are fellow human beings.”
Sulmasy said the terminally ill must be reminded of their intrinsic dignity at a time of fierce doubt, especially in a society that prioritizes independence, youth and beauty.
The opposition was determined the winner after 22 percent of participating audience members said physician-assisted suicide should not be legalized, up from only 10 percent at the start of the debate. Sixty-seven percent of respondents at the end supported legalization, up only 2 percent.
“Don’t vote for this dangerous, dangerous law that actually deprives people of the possibility of having their dignity and having doctors who have to work to improve their quality of life,” Finlay said in closing remarks. “This law allows them to throw the towel in.”
Intelligence Squared U.S. is a non-partisan, nonprofit organization founded in 2006 that aims to provide constructive public discourse and reasoned analysis.
The young woman who moved to Oregon to take advantage of the state’s controversial physician-assisted suicide law ingested a lethal dose of doctor-prescribed barbiturates Sunday, sparking national debate on so-called “death with dignity” legislation.
Brittany Maynard, 29, was diagnosed with an aggressive glioblastoma brain tumor in January and was later given six months to live. Maynard and her husband, Dan Diaz, moved from California because that state does not allow terminally ill adults to end their lives with doctor-prescribed drugs.
“She died as she intended– peacefully in her bedroom, in the arms of her loved ones,” Sean Crowley, a spokesman for advocacy group Compassion & Choices, told The Associated Press. Maynard suffered increasingly frequent and longer seizures, severe head and neck pain, and other stroke-like symptoms, he said.
Working with Compassion & Choices, Maynard used her story to raise awareness about physician-assisted suicide and inspire other terminally ill Americans to end their lives on such terms.
“I don’t wake up every day and look at it, I know it’s in a safe spot,” Maynard said in a Compassion & Choices-produced video about her life-ending drugs. That video has been viewed more than 10 million times on YouTube. “I will pass peacefully with some music I like in the background.”
Gwen Fitzgerald, director of communications with Compassion & Choices, told Life Matters Media she believes younger people can identify with Maynard and learn from her decision.
“The attention has been incredible, very heartwarming that people have listened to what she had to say. People are trying to have a more open mind about her decision,” Fitzgerald said. “We tend to think about people who are dying as older. Obviously, a 29-year-old is a bit more a-typical, thank goodness, but her message is resonating with a broad range of audiences.”
Physician-assisted suicide is legal in four other states: Washington, Vermont, Montana and New Mexico. More than 750 people in Oregon have used the law to die.
Both the Oregon Death with Dignity Act (1994) and the Washington statute (2008) set safeguards to protect patients against coercion from physicians or from family members. Each patient must be of sound mind when requesting the prescription and be informed of palliative and hospice care options. Two doctors must confirm a diagnosis of terminal illness with no more than six months of life-expectancy.
Maynard’s decision and influence upset some religious and disability rights groups.
“We are saddened by the fact that this young woman gave up hope, and now our concern is for other people with terminal illnesses who may contemplate following her example,” Janet Morana, executive director of Priests for Life, said in a statement to the AP. “Brittany’s death was not a victory for a political cause. It was a tragedy, hastened by despair and aided by the culture of death invading our country.”
Dr. Ira Byock, a palliative care physician, said he believed Maynard was being “exploited” by Compassion & Choices and that palliative medicine could have aided in alleviating her suffering.
“Compassion & Choices actually sold to the public the legalization of physician-assisted suicide because of unremitting pain. But we can control pain,” he said on PBS Newshour. “What’s happening now is that over 85 percent of people who use Oregon’s law and end their life do so because of existential or emotional suffering, feeling of being a burden to their families, feeling the loss of the ability to enjoy life, feeling the loss of meaning.”
Byock, author of The Best Care Possible, said Maynard could have received “excellent whole person care and be assured of dying gently in her bed surrounded by her family.” Palliative medicine is provided to the terminally and seriously ill to help treat symptoms and side-effects of disease. The goal of palliative care is not cure.
But Craig Klugman, chair of DePaul University’s Department of Health Sciences and a bioethicist, told LMM many terminally ill patients wish to have control over their final days and die only when they feel ready.
“As the Oregon experience has shown, for many patients, assisted suicide is about having a feeling of control– since a large percent of individuals who receive a prescription for their death do not take it,” he said. “The decision is a very personal one that needs to take into account not just the patient but also their family. That this was, controversially, the right decision for Mrs. Maynard does not mean it is the right decision for anyone else.”
Klugman said the assumption of many medical professionals that palliative care and other comfort treatments negate the need for “death with dignity” laws is based in belief that suicide is immoral.
“Sudden, unplanned suicide by healthy people is tragic and leaves survivors with questions and often guilt that they could have or should have done more. But that is not the case here,” he added. “For Mrs. Maynard, even though palliative care could help with her acute symptoms, it could not assist with her existential ones— watching her lose control over her body and mind, the loss of what she felt was her dignity as others had to take on more and more of her daily activities of living, and living with the knowledge that for her, this diminishment was not a life she wanted to experience.”
Peg Sandeen, executive director of the Death with Dignity National Center in Oregon, told LMM the national attention on Maynard’s decision reflects increasing support among Americans for “death with dignity” legislation.
“I am saddened by the tragedy of this young woman’s death, but I am thankful the state of Oregon offered her options at the end of her life,” she said. “When you talk to average Americans, between 60 to 70 percent of people say ‘yes,’ ‘death with dignity’ should be legal. When you have a compelling story, when you show a young family with a member dying, suddenly an issue that has broad support becomes something that everyone is engaged in.”
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