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.
Filmmaker Edgar Barens spent a grueling six months in-and-out of the Iowa State Penitentiary– one of the nation’s oldest maximum security prisons– gathering footage for his latest film, Prison Terminal: The Last Days of Private Jack Hall. In 2006, Barens, a hospice volunteer, was granted unprecedented access to the facility’s new hospice program.
The Oscar-nominated short centers on the final months of terminally ill prisoner George William “Jack” Hall and the prisoners-turned-hospice volunteers who care for him. Hall, an 82-year-old World War II veteran, was sentenced to life in prison for a 1977 murder. Hall killed a man he said he believed was selling drugs to his teenage son.
Barens, a visiting researcher with the University of Illinois at Chicago’s Jane Addams Center for Social Policy and Research, spoke to Life Matters Media about his experiences working in the prison.
Should prisoners near the end of life have more freedom?
Barens: The truth is, and I’m quoting the director of the prison hospice, the gavel already dropped for these guys; the judge made a decision, they are guilty, they are in prison– that’s it. They lost their freedom, and they shouldn’t be punished any further. The freedom to die with dignity is a human right.
Trust me, it’s not fun living in prison. I could barely do it for six months, let alone for 20 years. However, I have not had a violent act perpetrated against my family, and I can understand how some people will feel differently. But as a society, I think we should strive to be better.
At the end of the day, a prison is soul sucking. There are so many prisoners who don’t know what they’re worth, so many lives wasted in cells. Not all prisoners are like the ones you see on Lockup: Raw.
Were some prisoners skeptical of hospice care?
Barens: Many terminally ill prisoners don’t want to touch hospice, because they think it’s another way for the state to force them to die, instead of doing treatments. There are inmates who will just do chemo until the very last minute. They don’t trust the state to say “you’re terminal.”
Prison hospice programs have started to lift the veil of mystery surrounding the infirmaries, because they incorporate inmates into the programs. The wall of suspicion is breaking down, and the prisoners who work with the nurses don’t see bad things going on, the rumors they’ve heard.
Instead, they see the slow decline of someone’s health. Prisoners age an average of seven years faster, because of the stresses of being in prison; a 50-year-old is considered elderly. During the next decade, some 100,000 inmates will die.
Describe your relationship with Jack Hall?
Barens: Well, the first two months I was in the prison there was nobody in hospice. Jack was a long-term infirmary patient– he was in there for 12 years, and it was by happenstance that he became the next hospice patient.
I got to know Jack when he was in the infirmary, and he would always go back to his World War II stories– he went to war when he was 17 and came back when he was 20. I think those were very formative years for him.
I realized he was damaged by the war, and he killed probably hundreds of enemy soldiers with the knife– he was a ranger, he was trained to kill. When he got back home, the government only gave him some Lucky Strikes and money, and said “forget everything you did.” So, I think Jack’s story reaches back to the war.
Many people who see the film are sympathetic towards Jack– he killed a drug dealer who allegedly got his son hooked on drugs. But I’m not justifying what he did, there’s no justification for that.
My first death as a hospice volunteer was Jack.
How did you react to being nominated for best documentary short?
Barens: It was crazy, I never in my wildest dreams thought it would go this far. I went, and it was fantastic. I took my mom, and we walked the red carpet together.
I think this issue will get a lot more attention now. I shot over 300 hours of footage, and I plan on releasing some of it online.
“Prison Terminal” is available on demand for HBO subscribers
Seriously ill patients in Illinois may benefit from the new Physician Orders for Life Sustaining Treatment (POLST) form, a medical order designed to travel with patients across care settings and direct doctors to provide or withhold lifesaving treatments.
“POLST has swept the nation, and Chicago is right in the middle of it,” said Dr. Julie Goldstein, a clinical ethicist and chair of the POLST Illinois Taskforce. “If done correctly, the POLST model will improve conversations about end of life and ethical care.” Goldstein addressed dozens of medical providers and caregivers Wednesday during a POLST webinar in support of National Health Care Decisions Day.
In 2013, Illinois modified the Department of Public Health Uniform DNR Advance Directive to closer resemble the National POLST Paradigm standard. POLSTs are more detailed than conventional living wills and advance directives– these forms give patients the freedom to indicate preferences regarding resuscitation, intubation, intravenous antibiotics and feeding tubes, among other things.
For instance, a terminally ill cancer patient may choose to decline resuscitation efforts, but opt for artificial nutrition. An elderly patient suffering severe dementia may opt for comfort care only.
The form is intended only for individuals in their last year of life, a point Goldstein stressed. “POLST is not for everyone. We recommend physicians ask themselves the “surprise” question: Would you be surprised if your patient died within one year?”
Ideally, patients will discuss their end of life wishes with friends and family before filling it out. “It is a process, not a single conversation,” Goldstein added during the informational call. “It allows the patient more time to think about future scenarios and discuss them with family, friends and care providers.” The Illinois POLST is divided into basic sections– CPR; medical interventions; artificial nutrition– and must be signed by a physician.
Physicians, nurses and emergency responders must also follow patients’ preferences when indicated on completed forms.
According to the Illinois Health Care Surrogate Act: “A health care professional or health care provider, or an employee of a health care professional or health care provider, who in good faith complies with a do-not-resuscitate order made in accordance with this Act … may not be found to have committed an act of unprofessional conduct.”
POLST was first developed in Oregon in the 1990s, and now 14 states have officially endorsed programs; 28 states are considering the use of these forms.
New film spotlights murderers caring for the dying
Prison Terminal: The Last Days of Private Jack Hall is an intimate, unnerving exploration of death behind prison walls. The Oscar-nominated documentary centers on the final months of terminally ill prisoner George William “Jack” Hall and the prisoners-turned-hospice volunteers who care for him.
The 40- minute short, directed by Edgar Barens, draws from footage collected in a six-month period in the Iowa State Penitentiary, one of the nation’s oldest maximum security prisons. In 2006, Barens, a trained hospice volunteer, was granted round-the-clock, unprecedented access to the entire facility and its new hospice program.
Hall, an 82-year-old World War II veteran, was sentenced to life in prison for a murder he committed in 1977. Hall killed a man he said he believed was selling drugs to his teenage son.
But the film does not focus on his past. Instead, it captures Hall after 20 years in prison; most of it spent in a cell in the prison infirmary, after a heart attack left him impaired. A severe bout of pneumonia has caused him to rely on breathing aids.
“Why don’t you just shoot me and get it over with?” Hall quips at a nurse after she tells him he is going through inhalers too quickly. “I left you last night, literally. At one-o-clock last night I woke up and couldn’t breathe.” Each night, his door is closed and locked by guards.
Barens has described his experiences working in the prison as “soul sucking.”
“The incarceration of a loved one is also a concern, but of central importance is the ultimate dilemma faced by the incarcerated and their families– death behind bars,” Barens said in a statement. “With over 2.5 million people incarcerated in the U.S., one can readily see why dying while incarcerated is quickly becoming an enormous problem not only for the U.S. correctional system, but also for the millions of family members beyond the walls.”
Some of the most moving material involves the interactions of hospice volunteers.
“When they brought in hospice, they gave us an avenue to take care of each other,” says Bertrum Burkett a.k.a “Henry,” a 49-year-old prisoner helping to care for Hall. “When I started hospice, I thought it would be about what I could give to the patient. But when you do what you do, the feeling that you get back from them, you can’t even describe it.”
Of the nation’s 1,800 prisons, only 75 have hospice programs. Only 20 use prison volunteers.
Barens’ film reminds us that nearly 20 percent of prisoners in U.S. penitentiaries are elderly. During the next decade, some 100,000 inmates will die- many alone in their cells or chained to hospital beds.
For patients and families to make informed choices about their own end of life care, reporters in every news medium must select more accurate language to describe and analyze noteworthy cases and concepts, said members of a panel at the Association of Health Care Journalists Conference in Denver Thursday.
“People learn from media reports and discussions of media reports, so the quality of media matters,” said Nancy Berlinger, a Hastings Center research scholar. The Hastings Center, a non-partisan bioethics research institute, sponsored the session.
THE CASE OF JAHI MCMATH
Berlinger took issue with the extensive and often inaccurate coverage of the recent case of 13-year-old Jahi McMath. Though the teen was declared brain dead in an Oakland Hospital this past December following surgery to remove her tonsils, adenoids and uvula, her family did not accept her physicians’ determination of death. The McMaths won a court order to keep Jahi on a ventilator and obtained permission for a transfer to an undisclosed care facility.
“When people talk about brain death, there can sometimes be the idea that it is completely up for grabs,” Berlinger said, citing the Uniform Determination of Death Act– a draft state law approved for use in 1981 that has been adopted in most states. The Act states that death can be determined in an individual who has sustained either (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem.
“Objections to the determination of death do not change medical facts,” Berlinger argued, questioning whether the media’s allowance of equal time and space to the McMath family and their perspective was a disservice to the public.
Berlinger explained that much coverage focused on a “fight to keep the patient alive,” rather than an objection to a death determination. “The patient’s family’s opinion was presented as a legitimate prognostic possibility.”
This confusion about brain states is difficult to undo, Berlinger said, arguing that it was exacerbated by repeated use of the term “life support” in reports about the case. As Berlinger explained, “life support” is not applicable to patients who are not alive.
Lisa Krieger, an award-winning science and medical research reporter with the San Jose Mercury News, said such language sparked disagreement in her own newsroom. While editors argued for the use of the term “life support,” Krieger pushed for “organ support.” The newspaper settled on printing “ventilation” and “breathing machine.”
Poor understanding among the media of such nuance led to poor understanding among the public, Krieger added. “I have a lot of remorse for the role we played in all of that.”
PALLIATIVE CARE AND HOSPICE
More accurate language across the spectrum of health care journalism can also clear up public misunderstandings about palliative and hospice care, said Dr. Daniel Johnson, a palliative care specialist at Kaiser Permanente’s Care Management Institute.
As recently reported in the New England Journal of Medicine, about 70 percent of Americans say they have no familiarity with palliative care, a medical specialty which Johnson argued can improve the quality of life for all patients diagnosed with serious illnesses and their families.
“Journalists are the interface about what is happening clinically and how the public is going to react to it,” Johnson said. In discussing palliative care in the context of “serious” or “chronic” illness rather than in conjunction with the “end of life,” Johnson argued that the practice becomes more appealing.
“The public is more okay with the term ‘serious illness,’” he said. According to the Center to Advance Palliative Care, the specialty is intended to provide an “extra layer of support” at any stage of serious illness, in conjunction with or without curative therapy.
Results of a 2010 study published in the New England Journal of Medicine revealed that not only did patients who received palliative care early in their cancer treatments report better quality of life and were less likely to be depressed than those who did not, but that palliative care patients also experienced longer median survival.
Despite such benefits, roadblocks to palliative care are numerous, Johnson said. Among them: referral challenges, staffing shortages and assumptions that palliative care and hospice care are the same.
“War-like language” in the media is especially problematic, Johnson explained, as patients are often depicted as “battling” diseases that others may not feel like “fighting.” Such cliches, he explained, reinforce assumptions that patients must pursue aggressive treatments in all circumstances.
“Destination language,” as Johnson called it, also does a disservice to end of life care overall. His examples of such language:
Is she ready for palliative care?
Is he in hospice?
Better wording, Johnson said, would be:
Is John receiving hospice support?
In staying away from “war” and “destination” vocabulary, Johnson said journalists will avoid “categorizing groups of people in categories they don’t want to be stuck in.”
Belgium has become the first nation to remove all age restrictions to euthanasia, after King Phillipe approved controversial amendments to the country’s 2002 euthanasia law this month.
A child of any age may be helped to die under strict conditions: the child must be terminally ill, close to death and suffering a great amount of pain. Counseling by doctors and a psychiatrist or psychologist is required, as is approval by parents or guardians. The child must possess the “capacity of discernment and be conscious” of requesting death.
The amendments easily passed the Belgian House of Representatives 86 to 44 in February, following a vote by the country’s Senate in December in support of the measure.
Socialist Senator Philippe Mahoux, sponsor of the country’s 2002 “right to die” legislation, called for the law’s expansion because he said doctors have been illegally helping sick children die. Mahoux, a trained surgeon, called euthanasia “the ultimate gesture of humanity,” according to Agence France-Presse. “The scandal is illness and the death of children from disease.”
Opponents, including religious leaders and some medical professionals, argue that children are not capable of making such difficult decisions. “The law says adolescents cannot make important decisions on economic or emotional issues, but suddenly they’ve become able to decide that someone should make them die,” Brussels Archbishop Andre-Joseph Leonard said at a prayer vigil during the vote.
CitizenGo, a Spanish conservative lobby, delivered more than 200,000 signatures to the monarch demanding that he reject the bill, according to AFP. Alvaro Zulueta, one of the petition organizers, said more than 5,000 signatures came from concerned Belgians, although Italians made up the largest number of respondents.
In 2012, euthanasia accounted for 2 percent of all deaths in Belgium, up 25 percent to nearly 1,400 cases. A terminally ill person may drink a barbiturate-laden syrup, or a doctor can administer the drug through an intravenous tube to induce death.
Belgium is one of a handful of European countries where euthanasia is legal. The Netherlands legalized euthanasia in 2002, allowing it in some cases for seriously ill minors 12 and older. Luxembourg allows euthanasia for adults; Switzerland allows doctors to help patients die in some circumstances.
The bill is making waves across the U.S. Noted painter and Christian author Joni Eareckson Tada, a quadriplegic due to a teenage diving accident, called the law “devastating” and “the most liberal euthanasia law in the world.” Speaking during the National Religious Broadcasters Convention in Nashville, TN, Tada called for a “backlash” against it.
Euthanasia is banned in the U.S., but physician-assisted suicide, or “Death with Dignity,” is legal in four states: Oregon, Washington, Vermont and Montana.
- Advance Care Planning
- Hospice and Palliative Care
- Life Choices
- Politics and Law
- Society and Culture
- Treatments and Illness
- Health Care
- Stopping Eating And Drinking To Hasten Death
- Filming “Prison Terminal” Was “Soul Sucking”
- Illinois Prepares For New POLST Form
- Hospice Behind Prison Walls
- Frailty: American Health Care Unprepared For How We Now Die
- January 2014
- December 2013
- November 2013
- October 2013
- September 2013
- June 2013
- May 2013
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Daniel Gaitan serves as a content producer...More