Journey Of Caregiving: Feeding Tubes, Juggling Medication And More

Journey Of Caregiving: Feeding Tubes, Juggling Medication And More

Posted on Friday, May 22nd, 2015 at 1:02 pm by lifemediamatters

Even with her training as a nurse, family caregiver Joanne Davis says she doesn’t feel equipped to handle certain tasks as she cares for her husband. “I think of people who are in a situation who don’t have that sort of experience and I don’t know how they manage,” she says. And yet, nearly half of the 42 million family caregivers in America perform medical and nursing tasks to care for their loved ones. This can be managing medications, cleaning wounds or feeding tubes, giving injections and more. Most do this all with little or no training (AARP).

Lessons On End Of Life Care From A Sister’s Death

Posted on Friday, May 22nd, 2015 at 1:02 pm by lifemediamatters

The health care professionals entering my sister’s hospital room, or answering my questions in the corridor, had perfected a polite method of ascertaining whether I was entitled to information about her condition (The New York Times).

I’ve Waited So Long, I Could Die

Posted on Friday, May 22nd, 2015 at 10:13 am by lifemediamatters

Courtesy WikiMedia Commons via Pixabay

Courtesy WikiMedia Commons via Pixabay

It has been a year since waiting lists at VA hospitals made international headlines, as our American veterans struggled to access timely health care. In the months since, The Associated Press has found that the number of medical appointments delayed 30 to 90 days has largely stayed flat. Appointments taking longer than 90 days to complete have nearly doubled in number, and patients typically get sicker during the wait.

However, our veterans’ waiting list isn’t our only worrisome one. Another is just as onerous- the list of those patients with End Stage Renal Disease (ESRD) awaiting donation of a kidney for transplant. Congress approved an exclusive benefit for citizens with ESRD in 1972, authorizing Medicare to fully fund patient dialysis- the only treatment that can prolong their lives. This technology and the benefit making it affordable resulted in a 260 percent growth in the number of those awaiting kidney transplants. Meanwhile, there was only a 16 percent growth in kidney supply. This explosive demand parallels such at the VA. In a country of enormous abundance, these waiting lists are killing our citizens.

There is a way to attack this waiting list, just as the VA is working to better serve its veterans. It takes a to-do list- not a waiting list- to achieve a creative solution. That solution is one supported by ethicists, scholars and the medical community; there has been wide consensus that now is the time to test the model for a regulated market for the sale of kidneys for transplant.

The current problem with such a proposal is that it’s against the law. Congress approved the National Organ Transplant Act (NOTA) in 1984, prohibiting the sale of organs and criminalizing such action with a prison term and fine. With no other scalable solution proposed, Congress explicitly outlawed organ sales.

In the 30 years since NOTA’s passage, the transplant waiting list has come to be known as a “waiting list to die,” ballooning to more 100,000 candidates who hope to receive one of 13,000 available kidneys each year. On average, between seven and 12 people awaiting a kidney die each day. In a country with such abundance, this reality is unconscionable.

In a country of enormous abundance, these waiting lists are killing our citizens.

Congress must authorize a pilot program for a regulated market in which live and deceased donors can be compensated to provide kidneys to unrelated candidates. We don’t need to categorically rescind portions of NOTA, but we do need to allow a test to determine whether providing payment for kidneys could ethically reduce the waiting list so that thousands won’t die due to a wait each year.

Altruistic donation is a selfless act and has been the only source of kidney supply. As wonderful as it is, altruism will never meet the demand. It is outrageous that our ESRD patients are regularly allowed to die while highly regarded ethicists, transplant surgeons and scholars are poised to support a proposal for such a regulated market test.

To be sure, there could be abuses in a system of financial incentives. However, these potential abuses are no morally worse than not trying financial incentives in a regulated market. A policy of financial incentives will produce fewer unfortunate results than the current system. Our veterans are heroes, and those who provide organs are, too. Let’s try on their behalf.

Illinois Measure Would Allow Cameras To Be Installed In Nursing Home Rooms

Posted on Thursday, May 21st, 2015 at 9:30 am by lifemediamatters

Courtesy WikiMedia Commons

Courtesy WikiMedia Commons

Illinois could soon allow nursing home residents and their families to install video cameras and audio recorders in their rooms to help protect against abuse and neglect.

Backed by Attorney General Lisa Madigan, the legislation would require resident and roommate consent and make nursing home residents or their families responsible for the purchase and maintenance of devices. A physician would need to determine whether a resident is capable of consent.

“Placing a loved one in a nursing facility is a difficult decision that many families will face,” Madigan said in a statement sent to Life Matters Media. “This measure provides an extra layer of security for nursing home residents, while giving their families peace of mind knowing that their loved ones are receiving safe, quality care.”

The initiative stems from complaints Madigan said she received from nursing home residents and families concerned for their care and security. The Illinois House of Representatives overwhelmingly passed her proposal April 16 and it was introduced in the Senate May 19.

Both the Illinois Nursing Home Administrators Association and Illinois Council on Long Term Care declined to comment.

Dr. June McKoy, associate professor of geriatrics and internal medicine at Northwestern University’s Feinberg School of Medicine, said the law would unfairly burden caregivers and shame seriously ill patients.

“I am very concerned about privacy and other issues raised by having cameras in nursing homes. It’s one thing to have cameras in your own home, if you got a babysitter for your child or some caregiver, but a nursing home is a whole different ball game,” McKoy said. “A lot of nursing homes don’t have private rooms, and proponents claim they can have a ‘granny cam’ targeted at those who give consent, but if I’m in a room with someone else, I wouldn’t want a camera. Period.”

McCoy, who said she has never heard of a patient asking for a camera, said those suffering from dementia or immobility could be recorded during baths or changes.

“You got caregivers going in and cleaning them, bathing them, doing intimate things to them, and that will all play out on camera, which will affect how caregivers and nursing assistants provide care,” she added. “They do a lot of extra work for patients that should not be on camera.”

Illinois has more than 1,100 nursing home facilities with nearly 76,000 residents. The U.S. Census Bureau estimates that by 2030, 22 percent of Illinois’ population will be 60 and older. In 2013, the Illinois Department of Public Health found 106 allegations of abuse, neglect or misappropriation of property against residents by facility staff to be valid.

If enacted, Illinois would become the fifth state (New Mexico, Oklahoma, Texas, Washington) to explicitly allow electronic monitoring devices to be installed. The recordings could be used in court for allegations of abuse.

The law would also require the Department of Public Health to establish a program to distribute up to $50,000 in funds, disbursed by lottery, each year to residents unable to pay for their own devices.

Death And Beer: Chicagoans Explore The Digital Afterlife Over A Pint

Posted on Wednesday, May 20th, 2015 at 3:19 pm by lifemediamatters

Death is a hard topic to chew over, but with a glass of beer and a plate of wings, the conversation comes easier, writes WGN reporter Thomas Owen in his glowing review of “Your Digital Afterlife.”

Life Matters Media, in collaboration with Chicago NPR affiliate WBEZ, hosted “Your Digital Afterlife” Tuesday May 19 at Revolution Brewing during Chicago Craft Beer Week.

“Normalizing conversations about death was a major theme among both hosts and attendees Tuesday night. After their tour, and their mingling, the event began, and with it came an outpouring of information,” he writes.

Read Here