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.
The organization Compassion & Choices serves to defend doctors and protect the rights of terminally ill patients, said Regional Campaign and Outreach Manager Roland Halpern during an informational event the group hosted in Wilmette, IL Sunday. Halpern answered questions from long-term and prospective members of Compassion & Choices, the nation’s largest organization with a stated mission of expanding options for patients at the end of life.
Halpern highlighted the case of Dr. Joan Lewis, a New Mexico oncologist who in 2001 faced the loss of her medical license for prescribing large doses of narcotics to help treat her patients’ chronic pain. According to The Albuquerque Tribune: The state Board of Medical Examiners accused the Albuquerque specialist of injudicious prescribing” of narcotics for six pain patients. The assistant attorney general called her practice “voodoo.”
Halpern said Compassion & Choices filed a friend-of-the-court brief and provided information about pain management and treatments. “The problem with what’s on the prescription box, is that it’s a recommended dosage based on what 40-year-old-males test out for during particular clinical trials. At the end of life patients are not usually 40 or have just one illness- some people respond to lower doses and some people need higher doses of pain medications,” said Halpern. “It’s not like all of her patients were dying or getting addicted. There really is no upper limit when someone is dying of cancer, as long as medication is introduced gradually and over time.”
The oncologist’s medical license was reinstated. “We believe that if a doctor is willing to be aggressive in treating end of life pain, they shouldn’t be left out to dry if something happens, and a medical board threatens them,” he said.
The non-profit arm of the organization also provides several services to patients facing death, including referrals to specialists or organizations, end of life counseling and advance care planning. “We never charge for such services, and we service clients in any state,” said Halpern.
He also advised non-Catholics about restrictions within Catholic hospitals and hospices. “You need to interview the hospice or hospital and say ‘these are my wishes,’” he said. “If it’s got a ‘St.’ in front of it, it may not be a good choice for you if you want to have a feeding tube removed.” Halpern asserted that Compassion & Choices is committed to keeping religion out of medicine.
The legal arm of Compassion & Choices advocates for aid in dying legislation across the U.S.– physician-assisted suicide (“Death with Dignity”) for mentally competent terminally ill patients. Such legislation varies state to state. Physician-assisted suicide is banned in Illinois.
But Halpern maintains Compassion & Choices does not support suicide or euthanasia. “Suicide is choosing death over life,” he said, then noting how a terminally ill patient is already in the process of dying.
“We need to have an open dialogue about death and dying,” Halpern said. “We’ve got to get back to the point where we talk about it and realize it’s not some scary thing.”
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Despite party politics and likely criticism from the political right, two U.S. Senators are pushing for government-funded end of life planning services for seriously ill patients.
Four years after the “death panel” hysteria scrubbed all talk of end of life planning provisions from the Affordable Care Act, Senators Mark Warner, a Virginia Democrat, and Johnny Isakson, a Georgia Republican, are going forward with a revised version of the legislation, The Wall Street Journal reports. Introduced in early August, The Care Planning Act of 2013 aims to give seriously ill patients and their families end of life counseling with more complete information about prognosis and possible treatment options. Such conversations would occur with doctors, nurses or religious leaders, and they would be covered through Medicare.
“A written plan will reflect the informed choices made by patients in consultation with their health care team, faith leaders, family members and friends,” a written statement from Warner reads. Those plans would have to be documented before a patient leaves a health care facility in order to improve adherence across multiple care settings, McKnight’s Long-Term Care News reports.
Warner says the legislation would give patients more freedom to discuss and choose medical treatment options- including the choice to stop aggressive treatments- before an illness progresses too far. “This is about honoring a patient’s choice, not making it for them,” he said. “It gives patients more control over how they will live.” Senate aides told the Journal that the legislation could benefit some six million seniors at a cost of less than $200 million a year.
Isakson credits advance health care planning for his own parents’ “terrific” deaths. “Both my parents took time to plan what they wanted with their doctors and me and my siblings,” he said. “This is about planning for care while a person still can. Because of their preparation and decisions, my parents had terrific quality of life at the end.” But like most Americans, Warner’s mother- who died from complications of Alzheimer’s- was not prepared for her death.
Hospice-related benefits would also become more accessible for seriously ill patients likely to live more than the six months required for Medicare coverage of such care. “They would have the option of receiving ‘wrap-around’ hospice-type provisions such as home medical visits and treatment, and caregiver relief as part of a trial project,” according to reporter Alicia Mundy.
The Department of Health and Human Services would implement the legislation with an advisory board of patient advocates, faith leaders and health care professionals. The legislation is endorsed by the Gundersen Lutheran Health System and the American Association for Long-Term Care Nursing.
In April Warner told a town hall in northern Virginia of the importance of advance care planning. “We’ve got to have an adult conversation in this country about end of life issues,” The Fredericksburg Free Lance-Star reports.
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The nation’s organ transplant network decided against considering new proposed guidelines which would have allowed hospitals and organ procurement organizations to decide when to best approach families of ailing patients about donating vital organs.
The board of directors for United Network for Organ Sharing, headquartered in Richmond, VA, were to debate the guidelines, which would have renamed organ donation after cardiac arrest to “donation after circulatory death,” NPR’s Rob Stein reported Monday. Most organ donors are now brain dead before such procedures
Image: Organ Transplant, WikiMedia Commons
With no word about the debate by Wednesday afternoon, Jill Finnie, a media representative with UNOS, told LMM that the proposed guidelines were put aside. “The board faced a lot of public comments, and so it looks like they’ll take it up in the future,” she said. Finnie did not provide any specifics about when that would be.
The proposed guidelines have sparked outcry from right-to-life groups and disability advocates who argue that families of the terminally ill and gravely injured would have faced pressure to end some life-sustaining treatments.
Stephen Mikochik, of Temple University’s law school, told NPR he worried about the effect that the proposals would have on families during hospital visits.
“You’re going to be extremely upset. If a physician comes in and says, ‘the prognosis doesn’t look very good,’ and then a procurement officer comes in and says, ‘let’s make something meaningful out of this,’ you might decide right then to agree to take the person off life-support so some of the organs can be harvested,” said Mikochik, who works with the National Catholic Partnership on Disability.
Betsy Edwards, a Lifelink coordinator, told Bright House Networks’ Bay News that organizations should only contact a patient’s family after the individual has died. “After all life-saving measures have been made, after the individual has passed away, that is when we would then become involved in talking to the family,” she said.
Image: Current Waiting List for Vital Organs, UNOS
However, not all involved with organ procurement were alarmed at the proposals. “I can appreciate the guidelines,” said Eric Price, a donation specialist with Gift of Hope. “UNOS is trying to bring about more discussions about donating, because there are not enough organs. We need to start addressing the lack of organs.”
Donating after cardiac death is extremely delicate, because vital organs must be harvested within minutes of death– an urgency that the proposed guidelines sought to remedy.
“The best way we felt to handle the very delicate decisions about approaching families was to have the hospital and the organ procurement organization work together to decide in individual circumstances how best to approach a family,” Christopher Hughes, a transplant surgeon and a committee member, toldNPR.
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Palliative care is an expanding and increasingly vital specialty of medicine, said end of life care expert Martha Twaddle, M.D., at a presentation for the Association of Health Care Journalists- Chicago Chapter.
“When I joined the American Academy of Hospice and Palliative Medicine, there were 50 of us– 25 were from Australia and the UK. Now, the membership is well into the thousands,” said Twaddle during the presentation, “Changing Costs and Care at the End of Life,” which included Life Matters Media co-founders, Randi Belisomo and Mary F. Mulcahy, M.D., and Advocate Illinois Masonic palliative care physician Julie Goldstein, M.D.
The presentation sought to explore end of life options in light of the “death panels” controversy, one which effectively eliminated efforts to compensate physicians for facilitating end of life discussions with patients.
Physicians typically only spend fifteen to twenty minutes with each patient. “It’s not a lot of time,” Mulcahy said. “You cannot go into these discussions with an agenda, you really have to speak with the family, the patient.”
In a complex field such as oncology, physicians must not only address disease treatment, but symptom management as a result of that treatment as well. In the course of a twenty minute appointment, treatment and symptoms are often too much to cover effectively; therefore, a robust discussion surrounding end of life issues is often not possible, Mulcahy said. These discussions, because their relevance may seem “far off” for patients, are frequently given low-priority by physicians and thus delayed.
Palliative medicine and hospice care allows patients more comfort at the end of life by reducing aggressive treatments and emphasizing pain management. Still, most patients remain skeptical or unaware of such treatments. Some physicians do not mention such care out of fear of being accused of “giving up” on their patients. Others simply avoid comprehensive end of life conversations altogether.
“When I sit down with patients and they say, ‘What’s palliative medicine?’ It’s easy to contrast it to what it isn’t, i.e. current medical care,” Twaddle said. “Current medical care is based on a biomedical model: here is the diagnosis, here is the treatment.”
However, palliative care is based off the roots of medicine, Twaddle explained, a biomedical-psycho-social-spiritual model. This “allopathic model” aims to cure the whole person, both body and soul- not just the disease. This model has been lost since the time of Descartes and the onset of modern technologies, she said.
“Palliative medicine’s secret agenda is to restore the wholeness of medicine, to bring it back to the person,” Twaddle said. Instead of beginning a doctor-patient dialogue with a discussion about treatment, care starts with a physician asking questions about the patients’ beliefs, ideals and wishes- what Twaddle called “the art of communication in medicine.”
Recently, Frederick Smith, M.D., director of clinical ethics at North Shore-LIJ Health System, said physicians have an ethical duty to inform their patients facing the end of life about hospice and palliative care services.
Smith’s presentation, part of the University of Chicago’s second annual Conference on Medicine and Religion, criticized the choices of many physicians who urge their patients to continue with more aggressive, painful treatments instead of more comfortable end of life care.
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In what is being called the strictest medical marijuana law in the nation, Illinois lawmakers have agreed to legalize the drug for some terminally ill patients.
Only physicians with existing relationships with certain patients could prescribe the drug, and patient background checks are mandatory. Patients would not be allowed to grow their own marijuana or use the drug around minors or in public. “What this would set up is a four-year trial program for patients who have an established relationship with a doctor and who can demonstrate that they need this to ease symptoms and take them out of pain,” WGN-TV reports.
The bill also sets a 2.5 ounce limit per patient per purchase from 60 state regulated dispensaries. Illinois will license about 20 growers.
“This bill is filled with walls to keep this limited,” said Democratic Sen. Bill Haine, The Chicago Tribune reports.
The bill now heads to Gov. Pat Quinn, who has remained tight- lipped about whether he will sign the bill into law, saying only that he is “open minded” about the issue. Lt. Gov. Sheila Simon, a former prosecutor, said that after meeting with patients, she favored the plan, The Associated Press reports.
“We are embarking here on a way to achieve relief, compassionate relief, consistent with the law (with) a system which avoids abuse,” Haine said. “It’s the tightest, most controlled legislative initiative in the United State related to medical cannabis.” The Senate vote was 35-21, with five more than needed for passage.
“At the end of the day, we’re talking about a plant,” said Sen. William Delgado, a Democrat from Chicago.
But not all lawmakers are pleased with the legislation. ”For every touching story that we have heard about the benefits of those in pain, I remind you today that there are a thousand times more parents who will never be relieved from the pain of losing a child due to addiction, which in many cases has started with the very illegal, FDA-unapproved, addiction-forming drug you are asking us to make a normal part of our communities,” said Republican Sen. Kyle McCarter before the vote. His daughter died in 2006 from a drug overdose.
According to the bill, “Modern medical research has confirmed the beneficial uses of cannabis in treating or alleviating the pain, nausea, and other symptoms associated with a variety of debilitating medical conditions, including cancer, multiple sclerosis, and HIV/AIDS,” citing a 1999 study published by the National Academy of Sciences’ Institute of Medicine.
“Medical marijuana works really well for hospice patients,” said Dr. Matthew R. Sorenson, an associate professor at DePaul University’s School of Nursing. “Based off my research, I think this type of bill has a lot of potential. Marijuana has a lot of benefits for other patients, especially for those suffering from MS or chronic nausea.”
More from Life Matters Media:
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- Health Care
- Illinois Prepares For Medical Marijuana
- Jesus Wept. Why?
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Daniel Gaitan serves as a content producer...More