Mass. Catholics organize against "Death with Dignity"
Posted on Sunday, September 30th, 2012 at 3:17 pm by Life Matters Media
Roman Catholics remain some of the most vocal opponents to the “Death with Dignity” initiative in Massachusetts, to which voters statewide will answer yes or no Nov. 6. The proposed action would allow physicians to prescribe life-ending drugs to terminally ill patients.
“The largest religious force in Massachusetts, the Roman Catholic Church, has come out squarely against the referendum, as have other prominent faith voices,” The Boston Globe’s Lisa Wangness writes. “The church teaches that human life is sacred from conception to natural death, and that suicide in any form is a grave sin.”
The Globe’s Chelsea Conaboy also reports that, “Catholic archdioceses from across the country contributed tens of thousands of dollars to the Committee Against Physician Assisted Suicide, which raised $900,550 from late April to September.”
According to New England’s NBC affiliate NECN, Catholics are organizing church by church against “Death with Dignity.” For example, St. Jerome Parish in Weymouth, Mass. is holding workshops encouraging parishioners to vote “no” on the initiative, also known as Question 2.
The initiative referred to as “Prescribing Medication to End Life” has a number of restrictions. “Patients would have to be determined capable of making and communicating their health care decisions, have at most six months to live and voluntarily express a wish to die on two occasions, 15 days apart,” reports the Concord Journal. A patient and his or her physician would also be required to discuss the option of palliative care.
In a blog post for Boston, Dr. Marcia Angell, a supporter of the proposal, writes: “No physician is required to participate in assisted dying; he or she may refuse for any reason whatsoever. This is a choice, not a requirement, for both patients and physicians.” Dr. Angell is the former editor of the New England Journal of Medicine.
The Massachusetts Medical Society and the Massachusetts Family Institute also oppose the act. The former president of the Society, Dr. Barbara Rockett, writes in a foil post: “We as physicians must avoid the so-called slippery slope of attempting to save money by doing less for our patients rather than rendering the proper care to them. To substitute physician-assisted suicide for care represents an abandonment of the patient by the physician.”
States currently allowing assisted suicide include: Oregon, Montana and Washington.
A 2012 study by the Yale Journal of Biology and Medicine analyzed Oregon’s 1994 adoption of “Death with Dignity” and its Catholic response. According to the study, “The Church used its pulpits to urge Catholics to vote against Measure 16 (the Act) and make a political contribution to the Coalition for Compassionate Care,” similar to the current Massachusetts response.
However, one of the biggest differences between Oregon and Massachusetts is the Catholic population. “[S]ince Oregon had only a small percentage of Catholics in the state, most Oregon voters saw the Catholic Church’s involvement against Measure 16 as an attempt by organized religion to impose its views on the public,” Taylor E. Purvis writes.
According to Pew Research, 43 percent of Massachusetts residents claim the Catholic tradition as their religious preference. Massachusetts has a larger percentage of Catholics than any other state.
The high percentage of Catholics is not, however, translating into statewide opposition to Question 2. A new Suffolk University poll of likely voters shows 64 percent would vote “yes” and only 27 percent would vote “no” on the initiative.
Read the full petition here.
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Addressing the needs of ethnically diverse caregivers
Posted on Friday, September 28th, 2012 at 4:50 pm by Life Matters Media
Addressing the needs of racially and ethnically diverse family caregivers can help reduce the number of unnecessary hospitalizations and improve transitions between care settings, according to new findings by AARP. Researchers Susan C. Reinhard and Rita Choula analyzed qualitative data on Hispanic and African American caregivers in Meeting the Needs of Diverse Family Caregivers.
According to the AARP Public Policy Institute, one in ten caregivers in the U.S. in 2009 were Hispanic, and 11 percent were African American.
An African American male family caregiver said he was not taken seriously in the hospital because he was dressed in jeans and a baseball cap—like he was from the ‘hood.’
Hispanics told researchers that they always knew they would end up as family caregivers- a cultural tradition. “A number of Hispanic family caregivers said they started caregiving when they were very young. Many, particularly female caregivers, have had years of experience caring for their grandparents, parents, aunts, and uncles,” researchers write. Experience, however, does not make their job any easier, especially when many of the younger family caregivers work and have children of their own.
Language continues to be a barrier to effective communication in hospitals between caregivers and doctors. The researchers note, “In many instances the health care professional delegated responsibility for translating to the family caregiver, who might not have a good understanding of the information being translated in the first place.”
African American caregivers complained of feeling invisible in hospital settings. “Many felt ignored by the hospital staff. Some said doctors, nurses, and social workers often left them out of discussions about their family members, and it was sometimes difficult to get their questions answered,” the researchers write. It is imperative that caregivers remain informed in order to relate information to patients, who are often confused.
The lack of caregiver training can also harm their patients. “For example, family caregivers said they often did not receive sufficient training in administering injections,” the researchers found. “They also reported that they were not formally trained in other areas, such as how to move their family member from the bed to the bathroom, how to change an adult diaper, or how to get the care recipient to walk.”
The study also discovered that racial stereotyping in hospitals arose with disturbing frequency. Sometimes, African American caregivers felt like they had to prove themselves to doctors and hospital staff. “An African American male family caregiver said he was not taken seriously in the hospital because he was dressed in jeans and a baseball cap—”like he was from the ‘hood,’ ” according to the report.
The study also found that as part of the “new normal,” caregivers provide unpaid contributions of more than 450 billion dollars annually. “Family caregivers are assuming ever- increasing responsibilities for managing health care at a time when the older adult population in the United States is becoming more racially and ethnically diverse,” the researchers write. These responsibilities can include social work, nursing care, and some caregivers even act as patient navigators in hospital settings.
Many caregivers reported feeling unappreciated and ignored. “Despite deep personal and economic investments in the care of their family members, family caregivers report that they seem largely invisible to those who might be able to help them feel more respected and confident in providing care” the researchers write. “And, they say, rarely does anyone ask them how they are doing, what their needs are, and how those needs might be addressed.”
Similarly, The American Psychological Association found that ”Factors such as socio-economic status, familial interdependence, level of acculturation, immigration status, and fear of stigma in response to a disease or physical disability may influence minority group members’ experiences of caregiving.” The association concludes that healthcare professionals need to consider these differences.
Healthcare professionals must work to eliminate any tendency towards racial stereotyping, the APA writes, because stereotypes can lead to errors in judgment about minority groups.
“[B]ecause families of color are often stereotyped as being close-knit and supportive of their kin, social service agencies may not take the time to assess the actual needs of this population. This assumption may lead to less allocation of resources, manpower, and finances for outreach to those communities, which in turn, may help to perpetuate the misconception that they underutilize social services because they are taken care of by their own families,” the APA writes.
AARP researchers maintain that minority caregivers want to learn and will take advantage of available aid. “These family caregivers say they want resources to help them better care for their family members, not someone else to perform the tasks for them. They want more knowledge and confidence, and backup if they need more training and information,” they report concludes. They recommend a 24-hour hotline for caregiving support and training sessions to help family caregivers deliver better care.
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Language can be a barrier to end of life care
Posted on Tuesday, September 25th, 2012 at 10:13 am by Life Matters Media
Some 50 million Latinos in the U.S. may struggle with language barriers to health care, leading to inadequate treatments, confusion and difficulties at the end of life.
“My main reluctance to getting health care in this country is the English language, and I suspect thousands of Latinos—especially those who aren’t fully bilingual—might feel the same,” writes Randy Nieves-Ruiz for Newsweek. The idea of navigating the health-care system stirs the simple fear that hidden within the arcane language of insurance policies are some unpleasant surprises.”
Nieves recalls a situation with a female relative who spoke little English. It was a struggle for her to even pick up the phone and call her doctor, he writes. The appointment is only the first obstacle for a non-English speaker. The fine print and terms of insurance coverage- confusing even to English speakers- can scare Latinos from getting treatment.
According to the New England Journal of Medicine: “Some 49.6 million Americans speak a language other than English at home; 22.3 million have limited English proficiency, speaking English less than ‘very well,’ according to self-ratings. Between 1990 and 2000, the number of Americans who spoke a language other than English at home grew by 15.1 million, and the number with limited English proficiency grew by 7.3 million,” writes Glen Flores M.D., director of the Center for the Advancement of Underserved Children. The numbers are larger in California and Florida.
However, Flores notes that in-hospital interpreters are rare. He cites a study by the Journal of the American Medical Association, which found that in 46 percent of emergency department cases involving patients with little English proficiency, no interpreter was used. The JAMA study concludes, “Interpreters are often not used despite a perceived need by patients, and the interpreters who are used usually lack formal training in this skill.”
Patient navigators are one way Latinos subvert the English-Spanish language barrier. These navigators help with medical forms, questions and even assist patients in getting to the hospital. They are sometimes referred to as “promotoras.”
According to NBC News’ affiliate in South Bend, “Promotoras are bi-lingual, bi-cultural patient navigators like Guadalupe Cornejo, stationed at cancer centers in a handful of cities with large Latino populations. Their job is to assist Hispanics diagnosed with cancer fill out important medical forms, make doctors appointments, arrange transportation for treatment, even providing emotional support.”
Many questions about language’s potential impediment to treatment remain. For example, a language difference within a patient’s home can affect hospital care, even when the patient understands English. “[E]ven when Latino patients are comfortable communicating in English, they are significantly less likely to receive recommended health services if they speak Spanish at home, when compared to Latino patients who speak English at home,” Jessica Gregg M.D. and Somnath Saha M.D. write for the National Center for Biotechnology Information.
“Thus, linguistic differences are not just differences in words but also differences in the concepts behind words and in the contexts that shape the meanings of words,” Gregg and Saha conclude, despite other medical research examining language as a shared structure. Just because a word in Spanish can be translated to English, it may not connote the same meaning.
Nieves answers the critics who would like everything to be in English. A bi-lingual speaker himself, Nieves writes, “They might be right. But reality is often different from aspirations … Fear of being mistreated due to the inability to communicate contributes to people’s willingness (or lack thereof) to seek health care, even though that fear may not be justified.”
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End of life counseling or ‘death panels’
Posted on Sunday, September 23rd, 2012 at 8:29 pm by Life Matters Media
Despite support from medical professionals and fellow Democrats, President Obama dropped Medicare funding for end of life counseling in the Affordable Care Act, recently upheld by the Supreme Court.
When the Act was signed into law in 2010, Democrats wary of being identified with “death panels” dropped proposals to encourage end of life planning, writes Robert Pear of The New York Times.
On Jan. 1, 2011, the Obama administration set Medicare payment rates by a tactic known as the regulation-writing process, and “voluntary advance care planning” rules were added to Medicare. Doctors who advised patients on end of life care would be compensated, even if advising patients to forego treatment. According to Pear, “the topic was included in a huge Medicare regulation setting payment rates for thousands of physician services.”
This is not a 15-minute conversation, and it should not happen in the back of the ambulance on the way to the ICU at 3 in the morning.
The Obama administration reversed the decision days later, amid conservative outcry. There is now no provision for Medicare “voluntary advanced care planning.”
“Many doctors and providers of hospice care had praised the regulation, which listed ‘advance care planning’ as one of the services that could be offered in the ‘annual wellness visit’ for Medicare beneficiaries,” Pear reports.
According to Politifact, a Pulitzer Prize winning fact checker, comparing end of life counseling to “death panels” was 2009′s “Lie of the Year.” Sarah Palin coined the term “death panels” on her Facebook page after an early draft of the Act was released.
Politifact notes: “This falsehood, our 2009 Lie of the Year, started after an early draft of the bill sought to allow Medicare to pay for doctors’ visits in which patients discussed end-of-life care, such as living wills. The critics labeled it suicide counseling.”
Many Republicans continue to share Palin’s concern. The Daily Beast reports that vice-presidential nominee Paul Ryan said that the Act “puts a board of 15 unelected, unaccountable bureaucrats in charge of Medicare who are required to cut Medicare in ways that will lead to denied care for current seniors.”
Mike Stopa, Harvard University nanophysics researcher and commentator for The Boston Globe writes, “Opposition to government-funded end of life planning does not imply ignorance of the indignity or discomfort of having one more tube placed into one’s body to buy an extra few days of painful life.” Stopa calls himself a life-long fiscally conservative Republican. He unsuccessfully ran for Congress in 2010 for Mass. 3rd district.
He asserts that medical innovation will suffer if cost-cutting panels discourage treatment for the ill. “First, we need to have people buy the expensive medicines and experimental technologies. Europe has discovered this as its regulated system of medicine has driven its pharmaceutical industry farther and farther behind that of the United States. Capping costs kills innovation,” Stopa writes.
In his closing, Stopa affirms Palin’s stark analysis saying, “Palin is right. Death panels are an inevitable consequence of socialized medicine.”
Jerry Old, M.D. of the Kansas University School of Medicine writes for the American Medical Association that end of life discussions with doctors are in patients’ best interests.
“Paradoxically, the very idea that created the most furor about governmental coercion would have increased patient autonomy by guaranteeing everyone the right to discuss and set goals with their doctors about the kind of medical care they want as the end of life approaches,” Old writes. He finds that discussing Medicare and hospice benefits with seniors increases their freedom to choose how they pursue the end of life.
The Associated Press reports that physicians are being urged by the American Society of Clinical Oncology to have those end of life discussions with patients. “The American Society of Clinical Oncology says too often, patients aren’t told about options like comfort care or even that their chemo has become futile until the bitter end,” writes health reporter Lauran Neergaard.
“This is not a 15-minute conversation, and it should not happen in the back of the ambulance on the way to the ICU at 3 in the morning,” says ASCO chief executive Dr. Allen Lichter. “When everyone is well and has their wits about them, it’s time to start the process,” Lichter says.
ASCO’s new guidance asserts that it is a trumpeting call for oncologists to discourage ineffective treatments and instead focus more on palliative and comfort care.
According to the society’s release: “ASCO recommends steps to ensure that physicians initiate candid discussions about the full range of palliative care and treatment options soon after patients’ diagnosis with advanced cancer (defined as incurable disease).”
Even though ASCO recommends end of life counseling, Neergaard writes, “it’s part of a slowly growing movement to deal with a subject so taboo that Congress’ attempt to give such planning a nudge in 2009 degenerated into charges of ‘death panels.’ ”
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This post was featured in the Zion-Benton News.Telling your child about terminal illness
Telling your child about terminal illness
Posted on Wednesday, September 19th, 2012 at 10:23 am by Life Matters Media
Hiding terminal illness from children can cause unnecessary stress on parents, confusion and anger for children, and a lack of much needed family support during treatment or end of life care, writes the American Cancer Society.
Clinical psychologist, author and Huffington Post writer Joseph Nowinski argues that children know more about death and dying than parents think, so they should be told the truth about a parent’s illness. Nowinski asserts that children have an idea of what death is, often understood in abstract from fairy tales or in real life from school.
“My 10-year-old daughter, for example, surprised me one day with this knowledge. When told that an older cousin had been diagnosed with leukemia, she replied, ‘I know about leukemia. A girl in my class has it,’ ” Nowinski notes.
The American Cancer Society recommends telling children about terminal illness in stages to help protect them. “Children need to be told the truth in manageable doses and given a chance to adjust to what they can understand while still going about their everyday lives.”
Stages are important, experts say, because children comprehend time differently than adults. Children’s egocentric worldview can be difficult to penetrate, especially when death is imminent. “Because a child’s concept of time is so different from an adult’s, your children may not cope well with many months of waiting for a parent to die. So talk to them gradually and only when you are fairly certain that this will happen in the near future, as in days or weeks,” the American Cancer Society recommends.
Nowinski does not advocate blunt and aggressive talks with children. Instead, he encourages nuanced and age-appropriate discussions. The type of discussion should depend on the child’s emotional, cognitive and social development.
While it may be tempting, he says, never give a child more information than he or she can absorb. Nowinski advises parents to remember that children are sensitive to the emotional moods and non-verbal communications of adults. He writes, “they sense when a parent is upset … So it makes sense to us to open communication rather than avoiding it.”
The American Cancer Society also advises that children need to be told the truth about terminal illness, because they need to be prepared for what may happen. Not preparing a child for a parental death can make the child feel unimportant, or even afraid of dying.
Perhaps the most traumatic unintended effect of not discussing illness with a child is that the child begins to believe it is his or her fault. “No parent intends this, but because children often cannot explain what they think and how they feel, not preparing them leaves them alone to make sense out of this critical event in their lives,” according to the American Cancer Society.
Similarly, ABC News parenting contributor Ann Pleshette Murphy spoke to children of parents with terminal illnesses in light of the cancer diagnosis of entertainment critic Joel Siegel. He had a son who was 3-years-old at the time. ”It is so natural for parents to want to protect their kids,” Murphy says.
She talked with 16-year-old Ted Summers, who had some advice. “Tell your kid what is going on and everything that you know and all the consequences because a kid’s imagination wanders on and they, you know they worry about a bunch of things,” Summers told her.
The teen did not respond well to the shock of his own mother’s chemotherapy. “The first time I saw her she didn’t have any hair, and I got mad at her and I yelled at her and I said ‘You’re not my mom, I don’t know who you are.’ ” A change of appearance, for example, can make a child angry, reports ABC.
Besides avoiding shock, there are other benefits to telling children about terminal illness and death. Sometimes, children help distract parents from dwelling on illness. According to Murphy, “Some parents say that the most astonishing thing about cancer was learning how to survive it from their children.”
Seven-year-old Noris Weston talked Murphy about how he helps his mom with her terminal diagnosis. “Some of the things I do to make her feel better is hug her, kiss her, rub her back.”
Ten-year-old Andrew Pavia was able to become more confident after learning of his mom’s illness. “I had a lot more responsibility than I did before, and I felt that after that I could basically get through anything.”
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