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Advocacy Liver Donor Living Donor Protections Living Donor Risks

Boston Globe Writes About Living Donor Paul Hawkes Death

[Note: To reacquaint yourself with the Paul Hawkes tragedy, scroll through the “liver donor” category, and/or search for Lahey and/or Paul Hawkes. Hawkes’ name wasn’t released to the public initially so the early coverage wouldn’t be found that way.]

Below is an excerpt. I encourage a full reading at the link below:

 
 

In July, Lorraine got an upsetting letter from the Massachusetts public health department, with the results of its inquiry the month after Paul’s death. Investigators said they uncovered no immediate quality problems at the hospital that led to the tragedy, which to Lorraine felt like they were saying it was OK he died. Even worse, the report mentioned Paul’s abnormal EKG and said Lahey surgeons were now asking whether “there should be a higher standard.’’ She began to wonder: Was there anything else she didn’t know?

Lorraine hired an attorney and requested Paul’s medical records, studying them late into the night. She became telephone friends with Donna Luebke in Ohio, a living kidney donor turned national advocate, who taught her how to search medical terms on a computer Lorraine kept next to her couch, under a gallery of photos of Paul.

Journal articles she found described a total of 13 to 21 donor deaths worldwide that researchers believed were related to the surgery. In her mind, that put a different spin on things. Lorraine read that the federal Medicare program requires transplant centers to provide independent donor advocates. Burns, who described himself as the donor advocate in Paul’s medical records, was listed on Lahey’s website as part of the transplant department.

She was angry with herself for not becoming better educated about risks before surgery, and at Lahey doctors, whom she felt did not protect Paul’s interests carefully enough. Many nights she e-mailed her lawyers at Lubin and Meyer in Boston until 2 or 3 in the morning, when she would finally collapse on the couch, her mind on fire. Then she would rise at dawn for her job as a school bus monitor for children with disabilities.

“Lorraine, we got this,’’ one of her attorneys eventually told her. “Get some rest.’’

She was also upset about what Paul’s records revealed about Tim’s illness. He had two tumors in his liver and one was relatively large, raising the chances of the cancer recurring after a transplant. It was big enough that he would not get priority on the New England waiting list for a deceased-donor liver. For patients with liver cancer, priority goes to patients who are most likely to live many years after surgery — and therefore make the best use of scarce organs.

Had Paul given his life for someone whose chance of long-term survival was compromised? Some studies have found that up to 70 percent of recipients with more advanced tumors are alive five years later, so Tim’s case was far from hopeless. Still, Lorraine believes she and her husband should have been given more information about Tim’s prognosis — and Paul’s consent form was silent on this subject.

Medicare requires transplant programs to provide “independent donor advocates’’ whose job is to protect the donor’s rights. But investigators, according to their report, saw one unnamed donor advocate attend meetings with the transplant team to discuss recipients. And when investigators asked one doctor, who said he was the donor advocate, how he protected the donor during the consent process, he replied that he tried to make sure the donor was not acting under duress, but that consent was the surgeon’s responsibility.

The hospital was also cited for not including recipient survival data in donor consent forms, including one signed by a donor on March 18, 2010. This was the day Paul signed his form, although the report does not provide the name of the donor.

The hospital and the organ network would not release results of their reviews, but a combined state/federal government investigation in 2010 cleared Lahey of any wrongdoing in Paul’s death. Yet during a more comprehensive evaluation of the liver and kidney transplant programs at the hospital later that year, investigators uncovered violations of Medicare rules in how the hospital obtained consent from living donors.

 
 

http://www.bostonglobe.com/lifestyle/health-wellness/2014/02/02/death-living-liver-donor-calamity-for-two-families-and-lahey/q9iRF9nHyQdewWjvlTgmRI/story.html

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Liver Donor Living Donor Risks

Primum Non Nocere – by Lorraine Hawks

I am the Lahey live donor liver widow.

 

Those of us left behind by the senseless death of a live liver or kidney donor; our voices must be heard.

The dark side of organ donation, be it live or cadaver, is rarely made known to the public.

People only want to hear the sunny stories, and dismiss the donor deaths and donor complications as if it should just be an accepted given.

It is not.

Organ transplantation is supposed to save lives, not kill the donors.
Doctors take a oath to “First do no harm”.

My husband wasn’t just harmed by live liver organ donation, he is now dead.

My husband’s death certificate lists his cause of death as “intra-operative hemorrhage”. In plain english, my husband bled to death on the operating table.

Afterwards CMS cited Lahey for “failure to initiate a massive blood transfusion protocol”. They was cited for non compliance on other things too. (See CNN.COM article “Organ Donor’s Surgery Death Sparks Questions“, published on April 08 2012)

Since Paul’s death, according to a government report, “The Lahey has now instructed the staff on massive blood transfusion protocols and they are back in compliance”.

 

That news is not comforting to me.

And it won’t bring back my Beloved.

 

Lorraine Hawks

 

Gravemarker of Paul Hawks, liver donor, died 2010

Categories
CMS - Medicare Liver Donor Living Donor Protections OPTN

More on Living Liver Donor Paul Hawkes and Lahey

First is Dan Walter’s blog, entitled “Profiles in Medical Ethics”, with the post “The Death of Number 215” referring to Paul Hawkes as Lahey’s 215th live liver donor surgery. Dan is also the author of “Collateral Damage”, about his wife’s death by ablation at Johns Hopkins.

 

Secondly, Lahey’s surgical team, Pomfret and Pompeselli, are wife and husband. The former operates on the living donor and the latter performs the procedure on the recipient. While there isn’t anything illegal about the arrangement, the fact the recipient’s surgeon *could* exert undue influence on the recipient and/or the recipient’s family to A. find a living donor and B. use his wife as the surgeon certainly strikes me as icky.

 

Jenkins, the dude who blamed all of Lahey’s CMS violations on paperwork snafus*, worked with Pomfret and Pompeselli at Beth-Israel before all three came to Lahey to perform live liver donor surgeries.

 

According to OPTN data, Lahey performed 23 live liver donor transplants in 2010. CMS regulations require a minimum of 10 per year to maintain certification.  (PS. University of Colorado, where living liver donor Ryan Arnold died in 2010, only conducted 3 living liver donor transplants that year, for a 33.3% mortality rate.)

 

UNOS/OPTN doesn’t collect data on the type of liver donor procedure performed. Why this is important is because hindsight tells us that when the transplant industry shifted from the open nephrectomy to the laparoscopic procedure, many deaths and maimings occurred due to the learning curve for the surgeons. Unfortunately, the true number were lost due to incomplete data collection.

 

Just a reminder, living liver donation carries a near 40% risk of complications in the US. For any other elective procedure, this rate would be completely unacceptable. But because the healthy person is being used ‘save someone’s life’, apparently doing such harm is okay.

 

 *And just how is denying Paul access to an Independent Donor Advocate an administrative mistake??
Categories
Liver Donor Living Donor Risks

Liver Donor Paul Hawkes Death Goes Public

Some of you will have a tingle of recognition when you read this story because of Lorraine’s comments on this blog. What happened to her and her family is far more tragic than this CNN article can begin to communicate, and it’s unfortunate too many of the commenters are such ignorant, judgmental and inhuman buttheads.

Keep in mind as you read this article that: A. 40% of prospective liver donors have complications, a nugget of info usually not dispensed during evaluation, and B. Tim, the recipient, wasn’t the best candidate for liver a transplant, but wasn’t really given that option.

 

http://www.cnn.com/2012/04/08/health/cohen-donor-safety/index.html

 

Categories
Liver Donor Living Donor Risks Uncategorized

Liver Donor’s Death Followed by His Recipient’s

Last year, two living liver donors died: the Arnold case in Colorado and another at Lahey Clinic in Boston. Less than one year later, the recipient has died as well. This is the obituary that ran in the Boston newspapers:

Timothy Paul Wilson, age 58, of Pelham, NH, passed away on the morning of May 2, 2011. He was born in St. Petersburg, FL on November 20, 1952.

Tim was a loving husband, papa, son, brother, uncle, nephew and cousin. He grew up in Odessa, FL and also spent many great times with his parents, Charlie Bob and Donna, in the mountains and rivers of Tate City, GA.

Tim is survived by his wife Susan, daughter Stephanie Stamp, son-in-law Jay, and granddaughters Cameryn and Mallory. He is also survived by his brothers, Charlie and Bobby Wilson, and sister Kathy Holzinger, sister-in-laws and brother-in-laws, numerous neices, nephews, aunts, uncles, including Uncle Don Wilson, and many dear cousins.

Tim was predeceased by his loving brother-in-law, who died on the operating table while donating part of his liver to extend Tim’s life.

Tim enjoyed a long and successful career at Raytheon and he took great pride in his work. Tim was an excellent water skier and enjoyed playing on local softball teams for many years.

He will be missed each and every day by his wife, Susan, his family, friends and colleagues. He was a gentle and kind man, loved by all who knew him.

A memorial for Tim will be held at a later date; those wishing to make a donation in Tim’s name may do so to the Pelham NH Food Pantry, 12 Main Street, Pelham NH 03076.