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.
As Illinois prepares for the January 1 rollout of legalized medical marijuana for some chronically and terminally ill patients, the Illinois Department of Public Health has been educating medical professionals on the benefits and limitations of the new pilot law. Connie Mueller Moody, assistant deputy director with the department, spoke about how the compassionate use of marijuana could supplement palliative medicine during a conference presented by the Illinois Hospital Association this month.
In August, Illinois became the twentieth state to authorize a program for the cultivation and dispensing of cannabis for medical purposes– the Illinois Compassionate Use of Medical Cannabis Pilot Program Act signed by Gov. Pat Quinn. On New Year’s Day, the four-year pilot program will begin. However, it may take several months before patients can actually receive the drug through the state-licensed dispensaries.
Moody was careful to point out that the law does not allow for recreational use, and patients and caregivers will not be able to grow their own supply- unlike other states with similar laws. No one under age 18 will be allowed to apply for the “medical cannabis registration card.” A registration program for qualifying patients must soon be established by the Department of Public Health. The Department of Agriculture will oversee regulation and licensure of up to 22 cannabis cultivation centers across the state; the Department of Financial and Professional Regulation will oversee licensure of some 60 medical cannabis dispensaries.
According to Moody, the various agencies are still developing draft rules, and they must be submitted within 120 days of Jan. 1. ”We want to do this right, our agency is very interested in insuring that this really does benefit patients,” she said.
Registered qualifying patients will be limited to purchasing 2.5 ounces of medical cannabis every two weeks. There are only 40 debilitating medical conditions in which an individual may be allowed medical marijuana; those include cancer, HIV/AIDS, hepatitis C and Rheumatoid arthritis. Anxiety and depression are not listed as qualifying conditions.
Dr. Jeanne Lewandowski, director of palliative medicine at St. John Hospital and Medical Center in Michigan, spoke about her experiences treating patients utilizing medical marijuana during the conference. “The vast majority of people in the State of Michigan that utilize medical marijuana smoke it, like in a joint or in a bong,” she said. “There is a group of people that will nebulize it with very specific devices, and there is a much smaller group of people that use edible marijuana. I think it’s very interesting that Illinois is looking into edibles as the primary source for medical marijuana, because that is not the case in Michigan.” The Illinois Department of Public Health is set to develop regulations for medical edibles.
Morgan Fox, communications manager for Marijuana Policy Project, the largest organization advocating marijuana policy reform, said the Illinois law is a positive step forward for both patients and doctors. “Any law that is going to prevent patients from getting arrested for just trying to treat their illness is definitely a good law,” Fox said. “It would be great if we could get some of the qualifying conditions expanded once the program is up and running.”
The death and resurrection of Lazarus remains one of the most unexpected and confusing pieces of the Christian Bible, yet the story continues to be a source of inspiration to believers dealing with the death of a loved one– and it also supplements countless Christian funeral sermons. What about Chapter 11 of the Gospel of John keeps believers coming back to it, and how did such a personal account of Jesus even emerge?
Now Jesus had not yet come to the village, but was still at the place where Martha had met him. The Jews who were with her in the house, consoling her, saw Mary get up quickly and go out. They followed her because they thought that she was going to the tomb to weep there. When Mary came where Jesus was and saw him, she knelt at his feet and said to him, “Lord, if you had been here, my brother would not have died.” When Jesus saw her weeping, and the Jews who came with her also weeping, he was greatly disturbed in spirit and deeply moved. He said, “Where have you laid him?” They said to him, “Lord, come and see.” Jesus began to weep. So the Jews said, “See how he loved him!” But some of them said, “Could not he who opened the eyes of the blind man have kept this man from dying?”
Then Jesus, again greatly disturbed, came to the tomb. It was a cave, and a stone was lying against it. Jesus said, “Take away the stone.” Martha, the sister of the dead man, said to him, “Lord, already there is a stench because he has been dead four days.” Jesus said to her, “Did I not tell you that if you believed, you would see the glory of God?” So they took away the stone. And Jesus looked upward and said, “Father, I thank you for having heard me. I knew that you always hear me, but I have said this for the sake of the crowd standing here, so that they may believe that you sent me.” When he had said this, he cried with a loud voice, “Lazarus, come out!” The dead man came out, his hands and feet bound with strips of cloth, and his face wrapped in a cloth. Jesus said to them, “Unbind him, and let him go.” – The New Revised Standard Version, John: 11: 30-44
Christopher N. Mount, an associate professor of early Christianity at DePaul University, told Life Matters Media it is significant that the raising of Lazarus is depicted within John, probably the latest and most philosophical of the four New Testament gospels. “The Gospel of John is dated about 90 to 100 c.e. We don’t know who wrote it, but church tradition attributed the gospels to apostles to help increase their authority. But none of the gospels identify themselves as having been written by apostles, a number of them, including the Gospel of John were actually written anonymously,” he said. Mount added that John has layers of composition– showing the text took shape over a period of time with various contributors. The Fourth Gospel also contains stories not found in the synoptic gospels– Mark, Mathew and Luke.
I think the verse shows a God who is present, a God that experiences what we do– even if it is in a small little way.
The story of Lazarus is about life and death, Mount added. “The issue becomes how does John deal with life and death, particularly in comparison to the synoptic gospels. A major difference is that John explicitly identifies Jesus as a divine being who descended to earth and will return to where he came from after his death,” Mount said. For example, the gospel begins with John 1:1: “In the beginning was the Word, and the Word was with God, and the Word was God.” In the synoptic gospels, Jesus is instead depicted as a Jewish peasant who becomes a prophetic figure and eventually a divine figure upon his resurrection.
“That difference expresses itself in the development of Christianity in terms of what can be called gnosticism: the myth of a savior figure from the heavens, entering into this world to bring knowledge to individuals who are trapped in darkness,” Mount added. “John is part of religious ideas that developed into gnosticism. Most scholars would argue that gnosticism in the developed form we see in the second century didn’t exist when John was written.” When it comes to Lazarus, Mount said John plays around with life and death, and that believing in Jesus allows one to transcend both. Jesus weeping after his spirit is disturbed is probably not about the physical death, but is instead about the failure of those around him to understand the truth of existence and his message. Lazarus becomes a sort-of parable.
According to Mount, many modern Christians may interpret the story of Lazarus and Jesus as showing Jesus identifying with the suffering of humanity. “You have the family grieving over the loss of a brother, and so the story goes to the fundamental suffering that human beings experience at the loss of a loved one,” he said.
And Pastor Rob Zahn, M.Div., said John 11: 35– “Jesus wept” – usually translated as the shortest verse in the Christian Bible– also begs the question of whether or not Jesus had to cry. “Is there deeper meaning in it? Does God cry? Does the creator of all things…cry? I think that is the question brought forward with that short little verse,” the pastor of Spirit Alive Church in Pleasant Prairie, WI, told Life Matters Media.
“I think the verse shows a God who is present, a God that experiences what we do– even if it is in a small little way. It may even be the reason for grace, unconditional love. Maybe unconditional love and acceptance come directly from some sort of cosmic understanding of what it means to be human,” Zahn added.
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Under the HIV Organ Policy Equity (HOPE) Act, a law signed by President Obama with bipartisan support, the Department of Health and Human Services can now begin to legally research standards for organ transplants between HIV-infected patients. In 1988, a time of great fear and uncertainty about AIDS and HIV, an amendment to the National Organ Transplant Act made it illegal to transplant any organ of any individual with HIV.
On Feb. 14, National Donor Day, the Hope Act was first introduced in both houses of Congress. It was drafted by Rep. Lois Capps (D-CA), a registered nurse, along with Senators Barbara Boxer (D-CA) and Tom Coburn, M.D. (R-OK). The bill was co-led by Rep. Andy Harris, M.D. (R-MD).
In a statement posted to WhiteHouse.gov shortly after the law was enacted, Obama called the ban “outdated.” “For decades, these organ transplants have been illegal. It was even illegal to study whether they could be safe and effective,” it read. “The HOPE Act marks an important step in the right direction, and I thank Congress for their action.”
Eric Price, a donation specialist with Gift of Hope Organ & Tissue Donor Network, said that lifting the ban is “great news” for both the transplant and HIV research communities. “It is a great thing to see that there are more people that can now be helped through organ and tissue donation, and it underscores the need for more people to sign up to be an organ donor because their are so many who need and who can receive help,” Price told Life Matters Media.
HHS is now required to annually review the results of the medical research with the Organ Procurement and Transplantation Network in order to help determine whether the results warrant these types of transplants becoming a standard of care for HIV-infected patients. The American Medical Association supported the HOPE Act, along with numerous patient and medical organizations- including the American Civil Liberties Union, the United Network for Organ Sharing and the Human Rights Campaign.
“Due to advances in HIV treatment and care, many HIV-infected people are living longer, with antiretroviral drugs that can keep their viral loads at almost undetectable levels. As these patients age, however, the virus puts them at higher risk for organ failure and they require organ transplants sooner than uninfected people with organ failure,” Dr. James L. Madara, CEO and executive vice president of the American Medical Association, wrote in a letter to the House of Representatives before the law was passed.
According to a recent study published in the American Journal of Transplantation, allowing HIV-positive organ donation to HIV-infected patients could save hundreds of lives each year.
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When Gregor Collins began caring for noted Austrian Holocaust refugee Maria Altmann nearly five years ago, he did not expect his experiences to evolve into the most profound and intimate relationship of his life. The aspiring actor/producer also did not foresee a critically acclaimed memoir detailing their unique bond, or his involvement in A Good Day To Die- an upcoming feature film exploring end of life issues with a comedic perspective.
Now 37, Collins spoke to Life Matters Media about his relationship with Altmann and his caregiving experiences. His first book, ‘The Accidental Caregiver,” was published in 2012. Altmann died in 2011 at age 94 with complications associated with dementia. She is remembered for her successful legal campaign against the Government of Austria to reclaim five family-owned paintings by the artist Gustav Klimt; the paintings were stolen by the Nazis during World War II.
How did you become a caregiver for Maria Altmann?
I was never drawn to it. Actually, it was never something I considered doing. I was just living this selfish life in Los Angeles and pursuing acting pretty heavily. A good friend of mine called me and said, ‘I’m taking care of this woman from Austria and she’s awesome, you have to meet her.’ I sort of blew him off a bunch of times, but then he told me that the family really wanted another caregiver. I finally agreed to meet her, and my life changed right there. It was like the first time in my life I cared for somebody besides myself, really.
I was definitely not a perfect caregiver. I didn’t have any skills or know anything about medicine. All I had was a good heart, and she was unbelievably amazing. She brought the best out of me. I was hired as a caregiver, but I became her companion- someone she wanted to have around to talk and laugh with. I wanted to be there every day. She was like a mother, a grandmother, a friend, even a lover from another lifetime.
Los Angeles is a lonely place, so it was nice to talk with her about art, the weather– she satisfied me in a romantic way, like we wished we could have met 70 years ago. We just clicked, you know.
What was the most difficult part of caring for someone?
Because I really fell in love with her, it was difficult to see the aging. It is really difficult to see someone you love and know that they won’t be around. That’s the hardest part.
Whenever I got emotional around her, I would leave the room. There were many occasions she would say something so sweet to me. One time we were driving and she said to me, ‘You’re going to miss me. I’m going to miss you.’ I started crying out the window, and she never knew. Towards the end, I cried in front of her for the first time, and I felt guilty- like she would know she is going to leave soon. But she almost giggled at me because she thought it was so cute.
How did you interact with Maria when she was feeling ill?
She developed some dementia towards the end. When I met her a few days shy of her 92nd birthday, she was right on the ball. After the Klimt case, her oldest son tells me that she was sharp as a tack until 90. She would talk to reporters in Italian and French and German, and would really get the media laughing and on their toes. After the paintings came in, she felt like she could wipe her hands and just be an older woman. It was never close to the point where she couldn’t recognize me, but I could leave the room and come back- and she would think I was coming back for the first time.
Often times with Maria, I saw firsthand how exposure to love and youth were more powerful than medicine. Instances where she was in pain or not her usual effervescent self, I would play her an opera, or I would walk in the room with a smile. These little things brought more life and joy and love to her face and body. The notion of ‘love is more powerful than medicine,’ I stand by it.
Also, I read that when it comes to Alzheimer’s and dementia, all the top doctors and medical professionals agree that medicine is not the most powerful or effective means to fight them– keeping minds active and stimulated is. I felt that was part of my job to keep her mind scintillated, and I really believe this extended her life and kept her dementia at bay as long as humanly possible.
Why did you choose to write ‘The Accidental Caregiver’?
I kind of wrote it because I felt like it was one of the most important things I could do in my life. I needed to preserve her legacy and our relationship. I also wrote it because I was so emotional, and it was an intensity. It was just me alone in a room at night crying or laughing about the day. It was really touching and surprising when people started to connect with it. I never expected the response.
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Two-thirds of Americans now say there are some circumstances in which doctors and nurses should allow a seriously ill patient to die, despite a growing minority who believe medical professionals must do everything possible to save a patient’s life in every circumstance, according to new findings published by Pew Research.
When asked about end of life decisions for other people, 66 percent said there are at least some situations in which a patient should be allowed to die. However, 31 percent said medical professionals should do everything possible to save a patient’s life in every circumstance.
“Over the last quarter-century, the balance of opinion has moved modestly away from the majority position on this issue. While still a minority, the share of the public that says doctors and nurses should do everything possible to save a patient’s life has gone up 9 percentage points since 2005 and 16 points since 1990,” the researchers wrote in “Views on End-of-Life Medical Treatments.” Nearly two thousand Americans from across the U.S. were surveyed by phone (both cell and landline) from March to April 2013.
Lead researcher Cary Funk told Life Matters Media the growing minority of adults who believe doctors should always do everything do keep a patient alive reflect multiple demographics. “You are seeing a change amongst a number of different groups. It is a little more pronounced among younger adults than among older adults, and you are seeing some change even among those 65 and older, but you are seeing a more pronounced change among younger adults. And you see a more pronounced change with those with lesser education, those with a high school degree or less,” she said. “It seems to be a broad-based change among adults, but I do see some groups changing a little more than others.”
A majority of adults also said there are at least some situations in which they, personally, would wish to be allowed to die– 57 percent said they would tell their doctors to stop treatments if they had a disease with no hope of improvement and were suffering a great deal of pain. Similarly, more than half of Americans said they would ask their physicians to stop treatments if they had an incurable disease and were completely dependent on someone else for their care. But 35 percent said they would want their doctors to do everything possible to keep them alive, even in “dire” circumstances– slightly more than those who said others should be kept alive in all circumstances.
When questions were framed with a moral imperative, some 60 percent said that a person suffering a great deal of pain and with no hope of improvement has a moral right to commit suicide, up from 55 percent in 1990. However, Americans remain sharply divided over the question of physician-assisted suicide, also known as “Death with Dignity.” Forty-seven percent approve and 49 percent disapprove of laws allowing a physician to prescribe lethal doses of drugs to terminally ill patients who would use them to commit suicide (in 2005 46 percent approved and 45 percent disapproved).
Religion and the End Of Life
Preferences about end of life treatments are still strongly related to religious affiliation as well as race and ethnicity. While most white mainline Protestants (72 percent), white Catholics (65) and white evangelical Protestants (62) said they would stop their medical treatments if they had an incurable disease and were suffering a great deal of pain, most black Protestants (61) and 57 percent of Hispanic Catholics said they would tell their doctors to do everything possible to save their lives in the same circumstances. Overall, blacks and Hispanics are less likely than whites to say they would stop aggressive medical treatments in any circumstance.
Craig M. Klugman, a bioethicist and medical anthropologist who currently serves as chair of the department of health sciences at DePaul University, said the Tuskegee syphilis experiments on African-Americans between 1932 to 1972 and the history of minorities receiving less care than whites are two realities behind these statistics. “There is a lot of mistrust, lots of myths among minorities,” Klugman said. “Sometimes they may feel like they are marked for death by physicians or feel that physicians do not work as hard for them.”
Nearly half of white evangelical Protestants and black Protestants said they reject the idea that a person has a moral right to suicide, but the religiously unaffiliated were much more likely to say there is a moral right to suicide. Eighty-five percent of unaffiliated Americans said that if an individual is in a great deal of pain with no hope of improvement, there is a moral right to suicide. Members of all Christian traditions, however, were least supportive of a right to suicide if an individual was simply a burden to his or her family.
Organ donation specialist Eric Price, who also served as a trauma and pediatric intensive care chaplain at the University of Chicago Medical Center, said the findings show more work to educate religious Americans is needed. ”The myth about what science and medicine can do still seems to be winning the day,” Price said. “We don’t always need to treat just because we can. There is a moral and ethical imperative on the part of the health care provider to sometimes just say no, or the very least demand advance directives as part of admission to a hospital when a patient is decisional.”
Klugman said the research shows more Americans now have an opinion about their end of life preferences than ever before. “More of us have seen people die difficult deaths, prolonged deaths, because medical technology now allows people to be sustained longer,” he said. “And people want choice, either way. They want more control over how they die.”
Only about one-third of adults said their end of life wishes are written down somewhere- whether informally or in a formal document, such as a living will or advance health care directive. That percentage is a significant increase; in 1990, only 16 percent had end of life care preferences documented in some way. Sixty percent of adults said they have talked with someone about their wishes for end of life medical treatments.
Funk said there is still a sizable minority- 27 percent- of adults who have given no thought to their end of life plans. The number remains sizeable among adults 75 and older; a quarter of those elderly reported having not considered their end of life plans. “It correlates quite strongly with whether you’ve written down your wishes or talked about your wishes,” Funk said. “About 22 percent of adults 75 and older have neither written down or talked about their wishes.”
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Illinois Hospice Unveils Collaborative Care Initiatives | ‘Dallas Buyers Club’ Intimately Explores End Of Life | Caregiving in America: How Do We Support Those Who Care?
- Advance Care Planning
- Hospice and Palliative Care
- Life Choices
- Politics and Law
- Society and Culture
- Treatments and Illness
- Health Care
- Illinois Prepares For Medical Marijuana
- Jesus Wept. Why?
- Diane Meier: Palliative Care Improves Quality Of Life, Reduces Medical Spending
- HIV-Infected Organ Ban Lifted With HOPE Act
- The Accidental Caregiver: An Interview With Gregor Collins
- November 2013
- October 2013
- September 2013
- June 2013
- May 2013
- April 2013
- March 2013
- February 2013
- January 2013
- December 2012
- November 2012
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Daniel Gaitan serves as a content producer...More