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.

In Light Of Possible Abuse At Body Donation Centers, Experts Offer Advice

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.

Expert Advice

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.”

"Even in death do we serve life": Inscription on a communal grave dedicated to body donors. Courtesy WikiMedia Commons.

“Even in death do we serve life”: Inscription on a communal grave dedicated to body donors. Courtesy WikiMedia Commons.

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?”

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Court Denies Teen’s Plea To Stop Cancer Treatments

Jackie Fortin and Cassandra C. Family photo via NBC Connecticut.

Jackie Fortin and Cassandra C. Family photo via NBC Connecticut.

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.

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Teen Sues State To Avoid Forced Cancer Treatment: Medical Ethicists Review Decision

Jackie and Cassandra Fortin. Family photo via NBC Connecticut.

Jackie Fortin and Cassandra C. Family photo via NBC Connecticut.

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.

Jackie Fortin pleas for her daughter's

Jackie Fortin pleas for her daughter’s release in video

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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Massachusetts Doctors Must Provide End Of Life Counseling

Courtesy WikiMedia Commons

Courtesy WikiMedia Commons

Physicians in Massachusetts are now required to offer end of life counseling to their terminally ill patients nearing death, according to new regulations taking effect. It is the first such law in the nation.

On December 19, Massachusetts Secretary for Health and Human Services John Polanowicz published regulations designed to help dying patients make their end of life care wishes known. Practitioners are to identify patients with a life expectancy of six months or less and ask if they want to discuss care options or complete advance health care directives.

The state created a sample brochure written in nine languages to help familiarize patients with hospice care, palliative medicine and advance directives, including the Medical Orders for Life-Sustaining Treatment (MOLST) form.

“The Department of Public Health is committed to ensuring that patients with serious advancing illness receive information about the full range of options for their care, so that they and/or their advocates may make informed decisions about their health care choices,” a statement sent to state medical centers and long-term care facilities.

DPH could not be reached for comment.

The requirement stems from a 2012 law, and the state will review hospitals’ compliance. Facilities are required to develop policies to help identify appropriate patients; compliance could become an issue during a medical center’s licensing review.

MOLST is a voluntary medical order allowing patients in their last year of life to indicate preferences regarding resuscitation, intubation, intravenous antibiotics and feeding tubes. It is based on the National POLST (Physicians Orders For Life Sustaining Treatment) Paradigm.

These regulations come in light of a controversial decision by the Centers for Medicare & Medicaid Services to continue in 2015 its policy of not reimbursing medical practitioners for end of life conversations with seriously ill patients.

In 2010, similar proposals were dropped from the Affordable Care Act after political opponents associated advance care planning sessions with “death panels,” a widely discredited accusation.

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Volunteers Help Incapacitated Adults With No Family Or Friends

Incapacitated adults without family or friends benefit from volunteer surrogates that act as medical decision-makers and patient advocates before, during and after hospitalization, according to findings from an innovative program to train surrogates.

Adults without surrogates are often estranged from family, face abuse and neglect, and are at high risk of receiving unnecessary medical treatments as they age. The study, published in the Journal of the American Geriatrics Society, followed the first 50 patients enrolled in Indiana’s Wishard Volunteer Advocates Program, an effort produced by the Regenstrief Institute and Eskenazi Health, a public safety-net health system.


Robin Bandy, program director

Volunteer surrogates were supervised by Robin Bandy, an attorney and the program’s founding director. Legal guardianship was formally assigned to the Volunteer Advocates Program. More than 90 percent of those who survived hospitalization were transferred to nursing facilities, according to the study, and many continue to receive visits.

Patients ranged in age from 22 to 90; average age was 67. All but one of the patients had at least four medical conditions at the time of hospitalization.

“It’s always been a challenge to find people to speak for adults who don’t have anyone. The adults who are enrolled in our program are people admitted to the hospital with no friends or family who can be their decision-maker or advocate on their behalf,” said Dr. Alexia Torke, a Regenstrief Institute and Indiana University Center for Aging Research investigator. “Some of them don’t have contact with their own family. Some have been abused or neglected by family.”

Volunteers made health care decisions, including end of life decisions, facilitated post-hospitalization placement to nursing facilities and were often the only people to monitor care in nursing homes after hospital discharge. Torke said some patients are able to interact and form relationships with guardians, although many remain unconscious.

“The majority of these patients were so incapacitated by the time they came into our program there was no way they could have done advance care planning,” said Bandy. “We had to go to court to get guardians appointed, because they had no capacity to make their own decisions.”


Dr. Alexia Torke

Among those assigned volunteers after hospitalization: an 85-year-old woman with dementia who had been living alone with her dead cat in a dilapidated apartment; a 65-year-old woman with dementia removed from her son’s care after he broke her arm; a 90-year-old man removed from his home, malnourished and covered in urine and bedbugs – his caregivers were not allowing him access to food or medicine.

“Many patients had not had basic, routine medical care for years,” Bandy added. “It’s important to have someone advocating for the patient, to make sure they get the medical care they need and not only in a crises.”

Some of them don’t have contact with their own family. Some have been abused or neglected by family.

Torke said she hopes the program will serve as a national model to replace or complement the frequently overwhelmed guardianship services provided by state agencies. An incapacitated adult may face Alzheimer’s disease, dementia or coma. Program volunteers are assigned only one or two patients.

“Guardianship services have really been a patchwork state-by-state. Each state has tried to find a solution, and in Indiana there actually were not any state guardians available. There was a desperate need,” Torke added. “We have had no trouble finding volunteers to train, and many have health care or social service experience. This program has tremendous potential to be expanded, however, it is able to take place in Indiana because state law allows this kind of system.” A state statute allows guardianship programs that are not tied to the government.

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