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Death by Organ Donation? - Opening Pandora's Box

By Peter Laird, MD

A friend recently sent me an article from the Wall Street Journal about organ donation and allegedly losing autonomous rights by signing an organ donor card. Initially, my first impression fell in line with the majority of comments to this article that this could damage the fragile organ donation system we have in America. However, using this commentary as a basis for further investigation, there is much in the commentary that should become part of the organ donor discussion of today:

What You Lose When You Sign That Donor Card

Becoming an organ donor seems like a win-win situation. Some 3.3 people on the transplant waiting list will have their lives extended by your gift (3.3 is the average yield of solid organs per donor). You're a hero, and at no real cost, apparently.

But what are you giving up when you check the donor box on your license? Your organs, of course—but much more. You're also giving up your right to informed consent. Doctors don't have to tell you or your relatives what they will do to your body during an organ harvest operation because you'll be dead, with no legal rights.

The most interesting and controversial evidence noted in this commentary is a reference to a medical report from 1999 by an anesthesiologist that records three instances of failure of the brain death criteria including one "donor" who had his organs harvested even though he had spontaneous respirations and movement at the time of organ removal contrary to accepted brain death criteria. (here) Even more troublesome are the collections of patients who have been declared brain dead by accepted criteria to subsequently survive and in some cases recover completely. (here)

 

Pronounced dead, man takes 'miraculous' turn

Some four hours after doctors declared Zack dead, a nurse began to remove tubes from Dunlap. His cousins, Dan and Christy Coffin, both of whom are nurses, were also in the room. Something about Zack’s appearance made them think that he wasn’t as dead as the doctors said. On a hunch, Dan pulled out his bone-handled pocket knife and ran the blade up the sole of one of Zack’s feet.

‘Our son is still alive!’ 
The foot yanked away, but the other nurse said it was a reflex action. So Dan Coffin then dug a fingernail under one of Zack’s nails. Zack yanked his arm away and across his body, and that, the other nurse agreed, wasn’t a reflex action. It was a sign of life.

“We went from the lowest possible moment to, ‘Oh, my gosh, our son is still alive!’ ” said his mother. “That was the most miraculous feeling. We had gone from the lowest possible emotion that a parent could feel to the top of the mountains again. We were still very guarded, because we weren’t sure what his prognosis would be, but just to hear the words that he was back with us is something we’ll remember forever.”

Doctors warned the family that Zack could have profound brain damage that would prevent his leading anything resembling an active life. But within five days he opened his eyes, and 48 days after the accident, he walked out of a rehab center and returned home, where the entire town gave him a hero’s welcome.

He’s working to regain his memories and to control his emotions, and he’d like to go back to his job as a warehouse worker. He also wants to get his driver’s license back.

“I’ve been wanting to drive [from] about the day I was back from rehab,” he said.

At Morales’ request, Zack reached in the pocket of his jeans and pulled out the pocket knife his cousin had used to prove he was still alive. Dan Coffin had given it to him as a gift and a memento.

“It makes me thankful that they didn’t give up,” Zack said, turning the knife over in his hand. “Don’t let the good die young.”

Shortly thereafter, he showed signs of breathing and brain activity. A few months later, this young man sat in my office with his father as they related the story. The strangest aspect of the entire story was his statement that he had his death certificate at home with him. He made a full and total recovery with no deficits whatsoever and returned to military duty as a computer specialist.

A second case I was involved with as a resident in training for my internal medicine career was that of a young woman who had an anoxic event (lack of oxygen) of unknown duration. I remember becoming involved with the case as a team of doctors tried to persuade the family that she was brain dead and to withdraw care. They refused and continued a vigil of prayer and support continuously. A couple of days later, the nurses began to tell us that the patient was moving spontaneously yet none of the physicians ever observed that in our brief visits. Things changed when the patient woke up and began breathing spontaneously without the ventilator.

One of the most poignant encounters I have ever had with a patient occurred about six months later when this same young woman walked back into the intensive care unit to thank all of us involved in her care. She did have a permanent brain injury resulting in complete blindness, but before me was the most grateful patient I have perhaps ever encountered in my entire medical career with expressed joy for her second lease on life even with the blindness. I am not sure how much her family related to her on the urgent meetings to withdraw care by the same team of doctors she was now thanking. It is a moment I shall never forget considering how close she had been to death by organ donation.

The demand for well preserved and intact organs for those also in desperate need is well documented with available organs only a fraction of those on the waiting list. Nevertheless, as great as the benefits of cadaveric donation, over forty years after the Harvard criteria for brain death came into existence, protocols vary from hospital to hospital and state to state. In the last decade, to accommodate this growing demand for organs, standards have been loosened to increase available donors with extended donor criteria and those patients with cardiac deaths instead of brain death. Just one case of mistaken brain death diagnosis should give us all pause to consider not only our own loved ones in need of a new kidney, heart, lung or liver, but to hold fast that we would never see even one case of death by organ donation. 

In the zeal to secure higher quantities of viable organs, we must first remember the dictum to do no harm. Fortunately, the cases of incorrect diagnosis of brain death are quite rare, but at the risk of making any error, the certainty of brain death must be considered an area where caution is in order. Anyone that listens to Zach's testimony of remembering being declared brain dead I am sure will consider that the Wall Street Journal commentary is an important dialogue to continue despite the fact it will most certainly be an unpopular and controversial endeavor in the renal community. The integrity of the organ procural system must be maintained at the highest levels of ethical donation, otherwise we risk losing the support of the community, further increasing the waiting times for transplant and the inevitable death toll that will likewise follow.

Altruistic Donor Leads 60 Person Transplant Chain

By Peter Laird, MD

Altruistic renal donation is the underlying ethical framework for our current donor system in America. Many have prematurely declared altruism dead, but the news highlighted in the New York Times speaks loudly that we have yet to see the full power of a complete stranger willing to offer himself as a gift of life. In this case, it started a chain that will now benefit over thirty renal transplant recipients. His story is worth sharing and extolling the benefits of altruistic donation.

60 Lives, 30 Kidneys, All Linked

What made the domino chain of 60 operations possible was the willingness of a Good Samaritan, Mr. Ruzzamenti, to give the initial kidney, expecting nothing in return. Its momentum was then fueled by a mix of selflessness and self- interest among donors who gave a kidney to a stranger after learning they could not donate to a loved one because of incompatible blood types or antibodies. Their loved ones, in turn, were offered compatible kidneys as part of the exchange. . . 

Dr. Robert A. Montgomery, a pioneering transplant surgeon at Johns Hopkins Hospital, which was not involved in the chain, called it a “momentous feat” that demonstrated the potential for kidney exchanges to transform the field. “We are realizing the dream of extending the miracle of transplantation to thousands of additional patients each year,” he said.

Dr. Montgomery is correct that kidney chains have the potential of transforming the field, but they all begin with a complete stranger willing to give of himself for nothing in return but a scar. The miracle of altruistic donation should never become too frequent to celebrate each and every sacrifice instance. Thank you Mr. Ruzzamenti, you have done well.

The New Renal Transplant Allocation System: No Elderly Need Apply

By Peter Laird, MD

The current system for allocation of available cadaveric kidneys for transplant is undergoing intensive revisions by the Organ Procurement and Transplantation Network (OPTN). Under consideration is how to match the best available donated kidneys with the patients who have the greatest expectation of longevity. Early, OPTN considered using age matching as one criteria to allocate kidneys, but after legal review, the committee felt there could be legal challenges based on the Age Discrimination Act. The results of such an approach could have an effect on the number of patients over the age of sixty five that would be eligible of for the transplant list:

OPTN/UNOS Kidney Transplantation Committee, Report to the Board of Directors, November 2011 

The Committee then examined results from a prior simulation run that did not include age matching (Exhibit A).  Run 37 used the current kidney allocation rules with a few modifications (use of dialysis;time instead of waiting time and inclusion of the A2/A2B rules).  Run 37 also included longevity;matching for the 20% longest lived kidneys (as approximated by kidney donor profile index [KDPI]);which were allocated first to the 20% of candidates with the longest potential survival (as approximated by estimated post transplant survival [EPTS]).

The results from Run 37 indicate that the distributions would be similar to those currently observed for race/ethnicity, degree of HLA mismatch, and blood group. There was a slight decline observed in the proportion of transplants for highly sensitized candidates. Similar to other proposed approaches, the proportion of transplants for older candidates also declined, though not as substantially. A representative from the Ethics Committee remarked that this decline is ethically acceptable as everyone who is old had a chance to be young, but not everyone who is young will have the chance to be old.

Several respected transplant nephrologists and surgeons have spoken in opposition of the proposed allocation system including Dr. Lainie Friedman Ross and Dr. Benjamin Hippen:

How Not to Assign Kidneys

Giving more organs to young recipients would also come at the expense of “older” recipients, which in this context can mean 50 to 64. (Only a tiny fraction of all kidneys go to recipients older than 70.) Since older candidates on the waiting list are less likely to live long enough to receive a kidney, making them less eligible for transplants will probably result in more deaths on the list, and more pressure on available living donors to donate to older candidates.

The new proposed renal allocation system comes at at time when some investigators are reevaluating whether age alone is a factor that precludes benefit. A recent study out of Johns Hopkins found in carefully selected patients over the age of sixty-five that there were significant benefits. With over half of the ESRD population in this category, few are aware that this new policy could reduce the chance of even having a living donor transplant by not being referred for evaluation in the first place:

Thousands of Seniors Lack Access to Lifesaving Organs, Despite Survival Benefit

The Hopkins investigators estimate that between 1999 and 2006, roughly 9,000 adults over 65 would have been "excellent" transplant candidates and approximately 40,000 more older adults would have been "good" candidates for new kidneys. None, however, were given the chance.

"Doctors routinely believe and tell older people they are not good candidates for kidney transplant, but many of them are if they are carefully selected and if factors that really predict outcomes are fully accounted for," says transplant surgeon Dorry L. Segev, M.D., Ph.D., an associate professor of surgery at the Johns Hopkins University School of Medicine and leader of the study being published in the January issue of theJournal of the American Geriatric Society. "Many older adults can enjoy excellent transplant outcomes in this day and age," he says, and should "be given consideration for this lifesaving treatment."

Since the initial public outcry when the new allocation system first came to attention, little is heard any longer on the status of this proposal. For half of the ESRD population in the elderly category, geriatric patients may wish to become more involved. After all, even when patients have health insurance and a willing donor, recent news confirms that there is no guarantee that the patient will be accepted for transplant. In a time of organ shortages, short sighted ethical perturbations will not help the system or protect those that they allegedly are designed to protect. It is time to bring this discussion back to the public where it belongs.

Transplant Candidates Aided by Bariatric Surgery

By Peter Laird, MD

Many patients with end organ damage face the challenges of staying alive with only the hope that they will receive a transplant in time. For obese patients in need of a healthy organ to stay alive, many are without any hope due to weight restrictions for transplant candidates. However, with the advent of bariatric surgery for weight loss, some transplant centers are expanding the pool of eligible candidates by utilizing weight loss surgery prior to graft donation. In one remarkable case, a patient in need of a heart transplant underwent bariatric surgery while supported by an artificial heart.

Weight-loss surgery aids transplant candidates

Martha Magdaleno suffered from an enlarged heart that left her perennially breathless.

"I couldn't do anything, like shower," the 55-year-old mother of four in Inglewood said through an interpreter. "Even when I brushed my teeth, I would be out of breath."

Her condition grew so severe that, in 2006, cardiologists implanted an artificial heart to assist her failing organ and put her on the waiting list for a transplant. That pump died after eight months, and doctors had to replace it. . .

But Dr. Jon Kobashigawa, director of the heart transplant program at the Cedars-Sinai Heart Institute in Los Angeles and Magdaleno's cardiologist, was determined to get his patient back in shape for a transplant. He sent her to the Khalili Center for Bariatric Care in Beverly Hills, where Dr. Theodore Khalili performed a gastric bypass operation on her in early 2010. As far as anyone knows, it is the only time such weight-loss surgery has been performed on a patient with an artificial heart.

The risky procedure paid off. Magdaleno began losing weight, "about a pound or 2 a week," she said. By February, her weight had dropped to 165 pounds, and Kobashigawa placed her back on the waiting list. On a Sunday afternoon in June, she had a successful heart transplant, receiving a new organ from a 27-year-old man who died in an accident.

This procedure may become a standard treatment for ESRD patients who fail the initial assessment due to obesity. For patients to experience the full benefits of bariatric surgery, the patient must understand that it is a tool to combat obesity, but it is not a cure. Many patients will regain all or most of the weight lost initially if they do not change unhealthy habits and learn to eat well and exercise. Unfortunately, obesity is also a significant cause of ESRD combined with the co-morbidities most often associated with obesity, diabetes and HTN.

After observing several patients undergo bariatric surgery and the many complications that can occur, despite the utility of this procedure, the better part of valour is to avoid morbid obesity at an early age when life style changes have their most dramatic effects. Unfortunately, as efficacious as bariatric surgery is in the case of Martha Magdaleno, it will inevitably add to the financialy burden of a population already at the highest end of medical care utilization. That in the end may become the most important determinant of how often this combined surgical treatment will become.

 

Facebook Unites Renal Transplant Patient with Donor

By Peter Laird, MD

Social networking entered a new sphere of influence when Roxy Kurze,  a young wife concerned over her husbands kidney failure sent a plea for a kidney to fall from the sky over the popular Facebook network. Amazingly, in less than an hour Ricky Cisco, essentially a complete stranger with only the briefest of acquaintance a year earlier replied wishing to donate his kidney.

Need a kidney? Michigan man finds one on Facefook

A 35-year-old Michigan man, Jeff Kurze, desperately needed a kidney. So he and his wife decided to use technology and social networking to get one. He posted his need for a kidney on Facebook and found a willing and compassionate donor in the name of Ricky Cisco.

On March 30, 2011, one of Cisco's kidneys was transplanted into Kurze at Beaumont Hospital in Royal Oak, Michigan. They are both in good condition following the transplant.

 

The level of care noted in this latest altruistic donation lends the conversation to pronounce altruism alive and healthy in this nation despite many pundits alarming propositions that it is dead and not enough. It seems that nearly every week, an altruistic donor who are often complete strangers stands in the gap of available donors and gives of their own self. Often, this is in conjunction with the newly popular renal transplant chains.  The story of finding a renal transplant through Facebook underscores the need for renal donation as well as the simple fact that there are people willing to give the gift of life if they can only become connected. I suspect that this will become a new tool improving renal donation rates.

Harvey Wells Doing Well after Kidney Transplant

By Peter Laird, MD

Harvey Wells, the traveling NxStage patient opening the doors of his RV to dialysis patients across the country recently underwent a renal transplant and is going well. Harvey has single handedly opened dialysis patients to the home dialysis option in his personal testimony and hands on demonstrations.  Take a look at a recent video in the Wall Street Journal that chronicled Harvey's journeys.

 

Harvey credits his kidney transplant to the good health from using the NxStage System One for the last 4 years. 

I certainly don't think I would have been transplant material if I had stayed in-center for 5 1/2 years.  I probably would never have gone for a transplant if it hadn't of been for NxStage.

We wish Harvey the best in his newest renal replacement and look forward to his continuing testimony to optimal dialysis options.

God bless and get back soon Harvey.

Transplant Surgeons Changed Practice after HIV/HCV Transmission Case

By Peter Laird, MD

In 2007, the news that four patients received HIV/HCV contaminated tissues from a high risk organ donor rocked the transplant medical community which still affects decisions on donors today.  One of the patients who received a kidney transplant sued because she was not informed that the donor was a high risk patient.  Unfortunately, even though the donors tests were negative for HIV/HCV at the time of donation, his high risk behaviour as a 38 year old gay man led to an undetected infection which he passed on to the recipients of his organs. The publicity surrounding this case still governs transplant practices among many of the nations transplant surgeons.

Transplant Docs Change Practice After HIV/HCV Case

In 2007, transplants from a single high-risk donor transmitted both HIV and hepatitis C to four organ recipients, despite negative antibody tests before the procedures. The case made national headlines, Segev and colleagues noted, and sparked a debate about informed consent and testing for HIV. . .

To see what effect the case had, Segev and colleagues surveyed transplant surgeons across the U.S. between Jan. 17, 2008, and April 15, 2008, getting responses from 422 surgeons in current practice.

Of those, they found, 297 reported using high-risk donors, but 31.6% changed practice after the 2007 event. Specifically:

• 41.7% of those who changed decreased use of high-risk donors.
• 34.5% increased the emphasis on informed consent.
• 16.7% increased use of nucleic acid testing.
• 6% implemented a formal policy.

In this specific case, CDC guidelines on high risk donors were over looked when the patients were not informed of the donors high risk status.  The patient that sued after her renal transplant had previously turned down an earlier transplant because the donor was likewise high risk.  In this case, the transplant surgeons were all aware of the donor's status but did not pass that information on to the patients.  All four recipients later turned positive for both Hep C and HIV, the first such documented transmission in 20 years.

Transplant Patient a 'Mess" after HIV Diagnosis

CHICAGO — A woman in her 30s who is one of the four organ transplant patients infected with HIV and hepatitis was not told that the infected donor was high risk, and had previously rejected another donor "because of his lifestyle," her attorney said.

Attorney Thomas Demetrio filed a petition Thursday in Cook County Circuit Court on behalf of the woman, asking officials to keep a hospital and an organ procurement center from destroying or altering any records involving the donation.

"She's really a mess right now," Demetrio said of the Chicago-area woman. "She's still in shock."

In the rush to increase organ donations, taking shortcuts on any aspect of this care is paid in the end analysis by the unfortunate patients who learned that their life saving transplant gave them two deadly viruses at the same time.   The current caution on the part of transplant surgeons who have changed their practice standards because of this case is prudent and should be encouraged. Throwing caution to the wind is a losing strategy in any situation, this one turned out to be tragic.

NBC Report on Dialysis Reveals Continued Media and Nephrology Bias

By Peter Laird, MD

NBC did several background videos on dialysis to accompany their  recent ProPublica feature report which  in my opinion continues the false impression that dialysis is a horrible treatment and renal transplant is our only hope. They correctly pointed out the need for a fistula to avoid complications of catheters, patients fear of needles, risks of infection and reduced clearances, but the primary focus was that of renal transplant implying that renal transplant is the only true hope.  This report based on the ProPublica series returns to the sad bias, in my opinion, now also by NBC of the only hope for patients with CKD-5 is to avoid dialysis and get on the transplant list early.

Visit msnbc.com for breaking news, world news, and news about the economy

Visit msnbc.com for breaking news, world news, and news about the economy

Visit msnbc.com for breaking news, world news, and news about the economy

I would hope that one day, a true and unbiased report on all renal replacement options, including optimal dialysis strategies would be headline news on a national network. Unfortunately, even noting the ProPublica report as the first part of the NBC nightly news that accompanies these videos gives the very biased viewpoint that dialysis is dangerous and that the only hope is renal transplant. Yet, for those that are not part of the 15,000 or so that get a renal transplant in the US each year, we must continue with dialysis as our mainline treatment option.  Yes, for many, renal transplant transforms their life, but so likewise does daily, nocturnal dialysis which is equal in survival to cadaveric transplant, and you don't have to wait to survive 5-8 years to get that survival benefit.  

While I applaud the attention that NBC focused on the ProPublica Dialysis series, it did so in my opinion, by continuing the myth of the gift of life only from renal transplant.  In such, their report will only bring continued death and destruction to hundreds of thousands of dialysis patients because NBC chose to completely ignore optimal dialysis in these 4 segments.  What a failed opportunity.

The dialysis  industry spin continues and people continue to die needlessly because home dialysis options are overlooked at the hands of our nephrologists who fail to inform.  Dr. Barbara Murphy of Mount Sinai Medical Center, in my opinion, is simply the latest biased nephrologist failing American dialysis patients by lack of informed consent of all renal replacement options, even more so on a national news program.  Perhaps she did speak of optimal dialysis, and NBC chose to exclude that discussion in her three segments, I will give her the benefit of the doubt on that issue, but certainly NBC could have chosen to truly educate but did not do so in 4 separate dialysis segments.

You may wish to contact Dr. Murphy at the link above and inform her of your opinion on optimal dialysis issues as I plan to do myself since she failed to make mention of anything outside of in-center dialysis other than renal transplant in three news segments focussed on dialysis especially in light of the recent FHN results.  I will be more than willing to run a full rebuttal by NBC or Dr. Murphy on my blog as well, should they choose to do so.

Not surprisingly, Dr. Barbara Murphy's specialty is renal transplant medicine.  Why would NBC choose a transplant specialist to tell us about dialysis?  Why not a dialysis specialist such as Dr. Chris Blagg, Dr. Robert Lockridge or Dr. John Agar? I can only state that the bias against optimal dialysis appears to run deep in my opinion, even at NBC nightly news. After all, these 4 segments were featuring dialysis, not renal transplant.  Shall the truth ever be told? This is simply my own opinion and my own personal impression of the 4 NBC nightly news segments on Dialysis.

Celebrities with Solid Organ Transplants

By Peter Laird, MD

The Widipedia has many interesting lists some useful, some just interesting, that they continually update such as fatal bear attacks for those that venture into the woods as well as a list of celebrities and what they call "notable people" who have recieved organ transplants.

This list of notable organ transplant donors and recipients includes people who were the first to undergo certain organ transplant procedures or were people who made significant contributions to their chosen field and who have either donated or received an organ transplant at some point in their lives, as confirmed by public information.

It is quite remarkable the diversity of notable people with heart, liver and renal transplants that I had never heard of before.  Truly disease is the unfortunate friend of all of us.  Many such as George Lopez and Alonzo Mourning are outspoken advocates for transplants, but many on this list were quite surprizing to learn about such as Ken Howard, Evil Knievil, Jim Nabors, Robert Casey, Neil Simon, and several others that I was unaware.  I applaud the gift of life given by so many living and deceased donors not only to these "notable" people, but all who altuistically give to their fellow man in need.

Arizona Medicaid Refuses to Finance "Questionable" Transplants

By Peter Laird, MD

The NYT featured an article today on a recent change to Arizona Medicaid funding that will no longer finance certain transplants deemed not to be cost effective.  The transplants in question are liver transplant for Hepatitis C, some bone marrow transplants, pancreatic transplants and lung transplants.  However, for the patients recently dropped from the transplant lists, this decision will mean a certain death sentence. Even heinous murderers are granted automatic appeals all the way to the US Supreme Court taking decades to result in an actual execution, yet for some involved on the wrong side of this decision, their death sentence will in some cases be a matter of days or weeks.

Arizona Cuts Financing For Transplant Patients

State Medicaid officials said they recommended discontinuing some transplants only after assessing the success rates for previous patients. Among the discontinued procedures are lung transplants, liver transplants for hepatitis C patients and some bone marrow and pancreas transplants, which altogether would save the state about $4.5 million a year.

“As an agency, we understand there have been difficult cuts and there will have to be more difficult cuts looking forward,” said Jennifer Carusetta, chief legislative liaison at the state Medicaid agency.

The urgency of many of the required transplants to sustain life is not mitigated in my opinion by the savings of 4.5 million dollars.  With all of the documented waste in government, sentencing needful patients to death should be the last resort of budget cutting tactics.  The ethics of this decision are based on an assessment that many of these transplants such as a liver transplant for Hepatitis C are ineffective according to Arizona State Medicaid officials.  Many transplant experts dispute these claims.  The larger issue for patients on dialysis is how shall we fair in the cost cutting back room deals of politics where many dialysis patients have annual bills over $100,000 for years on end. What hard choices will the dialysis industry face in the future?