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.
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In a statement posted to WhiteHouse.gov shortly after the law was enacted, Obama called the ban “outdated.”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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Chicago area experts react to the final decision of Tim Bowers
Tim Bowers, the 32-year-old Indiana hunter who fell 16 feet from a tree and suffered a severe spinal injury that paralyzed him from the shoulders down, chose this week to forego the life-support sustaining him Sunday, and his decision has sparked national dialogue about the rights of patients and the importance of advance care planning. Bowers, whose C3, C4 and C5 vertebrae were crushed in the accident, may never have been able to breathe on his own again. In an unusual occurrence, he was given final say about his medical care after doctors at Fort Wayne’s Lutheran Hospital brought him out of sedation. That way, Bowers could decide for himself whether he wanted to live or die.
“We just asked him, ‘Do you want this?’ And he shook his head emphatically no,” his sister, Jenny Shultz told The Associated Press. “I just remember him saying so many times that he loved us all and that he lived a great life.”
Jean Kosova, a registered nurse and ethicist in Chicago, said Bowers’ final decision should be viewed positively because it demonstrated a competent adult willing and able to state his wishes. “These wishes were supported by his family and the medical staff. The family was relieved of the burden of making the decision to withdraw life support, and hopefully will live without the guilt that many families feel after making such a decision,” she said.
However, Kosova said she understands why some feel disturbed by his decision. “Was he in an optimal condition to make an informed decision? Some might argue that 24 hours after such a devastating accident, one cannot fully comprehend the reality of the present or future issues to be faced,” she added.
Kosova questioned whether the extent of Bowers’ neurological injuries were known in such a short time after his accident.”Without knowing more, we have to assume that the doctors were able to present him with enough facts that led him to understand he was headed for a kind of life that he did not want for himself.”
Craig M. Klugman, a bioethicist and medical anthropologist who currently serves as chair of the department of health sciences at DePaul University, said technology complicates end of life decisions for many Americans, because patients can be kept alive longer than ever before. “Technology in medicine can provide wonderful benefits to extend life, cure disease and improve comfort. It can also create burdens such as having to make difficult ethical choices between life and death,” he said.
Informed choices such as Bowers’ decision are the backbone of clinical ethics, Klugman said, and in making that decision, the patient was exercising his legal right.
“Others may disagree, and other patients would have undoubtedly made different choices,” Klugman said. “In his case, he spent his last hours surrounded by those he loved, celebrating his life, and preparing to leave this world on his own terms with the support of his family and health care team. For him, this was a good death.”
Pastor Rob Zahn of the Evangelical Lutheran Spirit Alive Church in Pleasant Prairie, WI, said religion influences end of life decisions, because most religions have a theology or understanding of what happens after death. “Without a religious influence, more likely than not, there is no ‘after we die.’ In that case, the decision is based only on what life might be like in the here and now. Will I hold my baby again? Will I hold my spouse’s hand? Will I go fishing again? Will I walk again?”
Bowers understood that he would not. “For many people from many faiths there is an understanding that there is more after this, that in some mysterious way that cannot be described, we will see our loved ones again. There is hope for something after death. Hope makes the decision more palatable,” he added.
Eric Price, a donation specialist at Gift of Hope Organ & Tissue Donor Network, said advance care directives are critical to ensuring one’s final wishes are followed through, as Bowers’ case of being brought out of sedation and able to communicate is extremely rare.
“Patient rights have always been defended in the courts and we all have our own right to choose how we want to die,” Price said. “Simple, fill out an advance directive and let those wishes be known to your loved ones. Don’t let your last days be decided by doctors who have never met you, and your loved ones best guesses for you.”
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Though anatomical gifts have generously served to further the education of medical students for centuries, more potential donors are now considering whole body donation as a viable alternative to circumvent substantial funeral and burial costs.
Attendees at a recent “Death Cafe” in Evanston, Illinois discussed this option. Kathy Fiete was one of those in attendance thinking about donation. “I am interested in donating my body to a medical facility after my death, probably for several reasons, only one of them being to be able to bypass the funeral industry,” she said. “I remember when my uncle died, we got a certificate of a water-sealed vault, guaranteed not to admit any water for one hundred years. ‘Who is going to check this out?’ I thought. I’m sure the family paid extra for this perk!”
The need for whole body donors like Fiete is well documented throughout the history of medicine. Well into the nineteenth century, the bodies of executed criminals were used in medical school classrooms. As the practice of public execution waned, anatomists were known to dig up bodies themselves- acting as “grave robbers” in the pursuit of science. Thomas Sewell, a personal physician to three U.S. presidents, was convicted in 1818 for unearthing a corpse for dissection.
Beyond educational purposes, advancements in the treatment of spinal injuries, joint replacements, cochlear implants and fertility have arisen through whole body donation, according to Science Care, a national donation facilitator. However, statistics demonstrating numbers of those making this decision are scarce. In 1999, The Orange County Register estimated that 17,500 people donate their bodies to science each year.
In the U.S., the Uniform Anatomical Gift Act governs the making of anatomical gifts of one’s cadaver to be dissected in the study of medicine, and it prescribes the forms by which such gifts are made. In the absence of such a document, the Act provides that a surviving spouse (or a list of specific relatives in order of preference) can make the gift.
In Illinois, two willed-body programs facilitate donations. The Anatomical Gift Association is the principal provider to medical, dental and nursing schools, and the Biological Resource Center of Illinois provides tissue to medical education and research organizations.
Both organizations have their own acceptance criteria, and they differ in their donation processes. Families of those donating to the Anatomical Gift Association make their own arrangements to have the deceased transferred to the facility through a funeral home. When the use of the donor is completed- in about one and half years- the body is cremated and available for return to the family. Donors to the Biological Resource Center have transportation and legal documentation completed by the organization’s staff, and cremated remains are ready for return to the family within thirty days of death. Remains may then be buried in the Biological Resource Center’s Memorial Garden, or at another cemetery.
Because donors to the Anatomical Gift Association are used for medical education, there exist some restrictions on eligible donors. Most remains can be accepted for medical studies, but potential donors who die with a communicable disease are excluded. In most instances, potential donors can successfully donate corneas and kidneys without interfering with whole body donation. The Biological Resource Center has similar restrictions, and the organization can also accept those whom have been an organ or tissue donor. Cadavers that have undergone an autopsy may be donated also. However, educators and researchers cannot use tissue from obese potential donors, and the organization has a body mass index chart for families to view while in the process of considering this end of life decision.
To learn more about each of these programs, you can visit the following websites:
Anatomical Gift Association http://www.agaillinois.org/
Biological Resource Center of Illinois http://www.brcil.org
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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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Daniel Gaitan serves as a content producer...More