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.
Illinois could soon allow nursing home residents and their families to install video cameras and audio recorders in their rooms to help protect against abuse and neglect.
Backed by Attorney General Lisa Madigan, the legislation would require resident and roommate consent and make nursing home residents or their families responsible for the purchase and maintenance of devices. A physician would need to determine whether a resident is capable of consent.
“Placing a loved one in a nursing facility is a difficult decision that many families will face,” Madigan said in a statement sent to Life Matters Media. “This measure provides an extra layer of security for nursing home residents, while giving their families peace of mind knowing that their loved ones are receiving safe, quality care.”
The initiative stems from complaints Madigan said she received from nursing home residents and families concerned for their care and security. The Illinois House of Representatives overwhelmingly passed her proposal April 16 and it was introduced in the Senate May 19.
Both the Illinois Nursing Home Administrators Association and Illinois Council on Long Term Care declined to comment.
Dr. June McKoy, associate professor of geriatrics and internal medicine at Northwestern University’s Feinberg School of Medicine, said the law would unfairly burden caregivers and shame seriously ill patients.
“I am very concerned about privacy and other issues raised by having cameras in nursing homes. It’s one thing to have cameras in your own home, if you got a babysitter for your child or some caregiver, but a nursing home is a whole different ball game,” McKoy said. “A lot of nursing homes don’t have private rooms, and proponents claim they can have a ‘granny cam’ targeted at those who give consent, but if I’m in a room with someone else, I wouldn’t want a camera. Period.”
McCoy, who said she has never heard of a patient asking for a camera, said those suffering from dementia or immobility could be recorded during baths or changes.
“You got caregivers going in and cleaning them, bathing them, doing intimate things to them, and that will all play out on camera, which will affect how caregivers and nursing assistants provide care,” she added. “They do a lot of extra work for patients that should not be on camera.”
Illinois has more than 1,100 nursing home facilities with nearly 76,000 residents. The U.S. Census Bureau estimates that by 2030, 22 percent of Illinois’ population will be 60 and older. In 2013, the Illinois Department of Public Health found 106 allegations of abuse, neglect or misappropriation of property against residents by facility staff to be valid.
If enacted, Illinois would become the fifth state (New Mexico, Oklahoma, Texas, Washington) to explicitly allow electronic monitoring devices to be installed. The recordings could be used in court for allegations of abuse.
The law would also require the Department of Public Health to establish a program to distribute up to $50,000 in funds, disbursed by lottery, each year to residents unable to pay for their own devices.
Physician decision-making is often tinged with concern for legal liability, causing some doctors to provide unwanted, often futile, medical treatments to patients nearing death, said an attorney and bioethicist to a crowd this week at the University of Chicago’s MacLean Center for Clinical Medical Ethics.
“Clinical challenges at the end of life are often about when to say ‘we’re done,’ about how far to go in treating patients who are unlikely to survive, or who are unlikely to recover,” said Nadia Sawicki, an associate professor of law at Loyola University Chicago. “As a legal matter, patients and their families typically have the ultimate say in decisions. Physicians and other health care professionals serve a vital role in guiding those decisions and making recommendations based off their professional expertise.”
Physicians ought not be in a position where the threat of legal liability causes them to violate their own ethical convictions.
Experienced physicians are usually more realistic about a patient’s prognosis or disease trajectory than family or close friends. But in some cases, Sawicki said, physicians fearing future litigation from family members for withdrawing medical treatments will push for continued, often aggressive, therapies.
“Evidence shows that in many, if not most cases of futility conflicts, health care providers and institutions ultimately do continue to provide treatments requested by families, even if this violates their own professional convictions about medical practice and medicine,” she added. “Physicians ought not be in a position where the threat of legal liability causes them to violate their own ethical convictions.”
Health care providers are more likely to face litigation for withdrawing treatments than for providing them, a symptom of the “contradiction” in American law, Sawicki said. Even though Americans have the right to medical self-determination, including the freedom to decline life-saving medical interventions, tort law does not recognize prolonged life as a legally compensable injury. However, some courts are now reconsidering that position and allowing claims to proceed.
“Patients can be harmed, as much by receiving unwanted care, as by having care withdrawn,” she added. “Courts are more effectively balancing tort law and consent. In a sense, with the threat of liability more balanced on each side, U.S. physicians should feel encouraged to do what they think is best in accordance with professional ethics and standards of care.”
She went on to list a handful of academic studies exploring the motivations of some medical providers for ignoring patient or surrogate wishes. According to a 1995 study published in the American Journal of Respiratory and Critical Care Medicine, 34 percent of physicians continued life-sustaining treatments, despite patient wishes that they be halted.
“We conclude that physicians do not reflexively accept requests by patients or surrogates to limit or continue life-sustaining treatment, but place these requests alongside a collection of other factors, including assessments of prognosis and perceptions of other ethical, legal, and policy guidelines,” researchers write. “While debate continues about the ethical and legal foundations of medical futility, our results suggest that most critical care physicians are incorporating some concept of medical futility into decision making at the bedside.”
A 2012 survey led by Dr. Ferdinando Mirarchi, medical director of the Department of Emergency Medicine at the University of Pittsburgh Medical Center, determined that 20 percent of physicians would defibrillate a patient with a clear do-not-resuscitate order.
“There are times where we have seconds to minutes to act,” he said. “In those instances, when a document gets misinterpreted, someone lives or someone dies.”
Mirarchi’s findings were echoed in a recent study published in BMC Medical Ethics. Fifty-two percent of physicians agreed that the risk of liability is lower when keeping someone alive against their wishes than in mistakenly failing to resuscitate.
“When confronted with a spouse’s wishes that conflict with those provided by the patient’s (advance directive), over half of respondents considered the threat of legal liability as important or very important to their decision,” researchers write.
In light of a multi-state investigation into cadavers being sold for medical research, experts are warning patients and families hoping to donate remains to carefully consider their options.
The FBI raided a suburban Chicago crematory and an affiliated company that arranges donations of human remains after search warrants were filed in Michigan, The Associated Press reports. The raids at Cremation Services, Inc. in Schiller Park, IL and the Biological Resource Center in Rosemont, IL could be connected to a multi-state investigation into companies collecting and distributing bodies donated for scientific research.
According to a statement from the Biological Resource Center of Illinois, search warrants were executed at the facility as part of “an ongoing investigation of two former business associates.”
The Biological Resource Center acts as a “bridge” between individuals who donate their body and the research community. Patients or families may choose to gift remains for altruistic and philosophical reasons, or to help save on funeral costs.
In 2013, federal agents raided International Biological in Detroit, Michigan. Television station WXYX reported that agents “removed body parts of 1,000 different people in December that were cut up; arms, legs and heads that were not embalmed, but kept on ice for the market.”
In 2014, FBI agents executed a search warrant at another center in Arizona. The CDC investigated reports of “potential occupational exposure” to human immunodeficiency virus (HIV), hepatitis B virus, hepatitis C virus and Mycobacterium tuberculosis among workers who performed preparation and dissection procedures on anatomical materials.
Paul J. Dudek, executive vice president of the Anatomical Gift Association of Illinois, recommends that patients wishing to donate contact medical centers or universities directly.
“The vast majority of full-body donations are for medical schools; there are probably 140 university-based schools with programs around the country. The easiest thing to do is call the one closest to you and ask how it works,” he said. “There are other not-for-profit organizations that do a very good job. There is tremendous demand for human specimens.”
The AGA manages the willed body donor program for medical and educational institutions throughout the state. It is not affiliated with any of the investigated companies.
Dudek said he hopes people will not be discouraged from donating their organs or body to science, because “physicians are always trying to learn new techniques and new instruments.”
Dr. Ben Margolis, director of the Autopsy Center of Chicago, called the developments “disturbing” and recommends families contact the Anatomical Gift Association before donating. It is illegal to sell any organ or body in the U.S.
“There is also a larger issue of comfort with death discussions in general. If decisions are only made around the time of death, a stressful time, families have less time to explore organ or full-body donation,” he said. “Become comfortable with the process before you have to make decisions.”
Full-body or brain donations are vital to helping scientists learn about progressive diseases, such as Alzheimer’s disease, he added.
Daniel McCarthy, founder of Elements, the cremation company in Illinois, recommends “every family do their own due diligence” before donating. It may be beneficial for families to speak with funeral directors, attorneys and religious leaders.
“It’s imperative that the family or whomever it is making the choice for the decedent contact the company themselves,” McCarthy said. “It’s imperative they ask the right questions: What happens? Why is it free? Who or where does the body go? Are there any caveats to how the body is used?”
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
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Daniel Gaitan serves as a content producer...More