Oriented to Thoracic Transplant Recipients --February 1999

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MASS MEDIA AND TRANSPLANTATION

By Steven Kesten, MD As health care professionals, relationships to our patients (or clients or customers depending on your view) occur at several levels. Generally, physicians view their interactions as private, confidential, and individually based. The therapeutic relationship and the trust that develops are important to the mutual goals.of the_patient and the physician.

On another level, physicians have an indirect and often direct professional relationship with the patient's family and close friends. Physician recommendations may influence the lives of these other people through their relationship with the patient. The third level of relationships extends beyond the small community of family and friends to the public as a whole. Much of what involves family and friends can apply to the larger community.

The decisions of a physician with regard to general philosophies and recommendations (investigations and therapeutics) on individual patients may impact on the community. There are ethical, religious, and financial implications of many decisions that health care professionals impose on the community. Just as the patient and their family have a right to responsible judgement on the part of the physician, so too does the community.

The members of the press are an important part of the community and are entitled to comment on what may simply appear to be a private physician-patient decision. In addition, the media may be the sole source of information about transplantation for 72% of the population in the United S tares.

There have been four recent occasions where national media attention has engaged in controversial debates on transplantation-related issues.

One involved the circumstances leading to deaths after heart transplantation at an individual transplantation center; the second involved a protocol being instituted for non-heart-beating donors. The third issue is that of reporting of a transplantation center's refusal of organs. The fourth issue is somewhat indirect at this time and not focused toward a specific center, the issue being cloning of animals. Much debate has evolved because of the involvement of the media in these medical issues and has the potential to influence how transplantation physicians practice their chosen field.

On the first three occasions, the role of the media could be considered as that of protecting the public. Certainly, if adverse events are happening to or are anticipated to happen to patients and if care is not consistent with acceptable standards of practice, one requires a medium to ask questions, provide information and alert the community.

This is a role that one might expect of family and friends. The dissemination of such information might be difficult when solely in the hands of family and friends. Legal actions (i.e., malpractice suits) are not generally distributed to the community nor are suspensions from regulatory agencies. There may also be a mistrust of health care professionals as a group (as with any self-interest group) who may be perceived as protecting group members and therefore hiding misdeeds from the public. Therefore an independent press is important.

On each of the three aforementioned occasions, questions have arisen with regard to the accuracy of reporting. However, perhaps "accuracy" is not the case. Indeed, there likely was a fair degree of accuracy in the reporting. The more important issue relates to the context of the reporting and the selected information reported. The press, as with other groups, can be somewhat self-serving and, in the interest of creating"interest," may choose to be selective or relay the facts in an unflattering and controversial context. I believe this to be tame of both the cases.

I was in the unique position of arriving several months before one of the "stories" was published about a transplantation program in the medical center where I am currently employed. The effect on the personnel was dramatic.

I believe that the vast majority of individuals involved in transplantation are dedicated, hardworking individuals who believe that what they are accomplishing is in the best interests of the patient, the patient's close community (family and friends), and the community at large.

Although work continued during the period of controversy, self-satisfaction, pleasure, and pride in work markedly diminished. There also is a "trickle-down" effect. Just as our interactions with our patients extend beyond the individual, the effect of the "story" had a significant impact on others in the medical center. Time that was previously spent in patient care, teaching, and research became directed toward self-analysis, responding to accusations, talking to patients and their families, support of the people in the medical center, attempting to improve communications, and to some degree there was "fingerpointing" (a non-productive but unavoidable phenomenon). I suspect that similar problems may have occurred as a result of the second story, although clearly the main issue was different.

Of more concern was the second-guessing in some aspects of clinical decision making. A transplantation program at.all times balances the status of the donor and recipient with the likelihood of a successful outcome. In heart and lung transplantation, numerous factors predict the likelihood of a better outcome.

For example, in lung transplantation, patients older than 60 years of age and those with primary pulmonary hypertension may have a slightly worse outcome than a 50 year-old patient with emphysema. If a program chooses not to perform transplantation on patients with primary pulmonary hypertension and those between the ages of 60 and 65 years, they may show slightly better center-specific survival rates.

It seems that some characteristics that define a "marginal" donor do not necessarily preclude the use of the graft. Use of selected marginal donors increases the donor pool and decreases the number of patients who might die while on the waiting list but may also increase morbidity after transplantation and adversely affect transplantation-specific survival rates.

Donors older than 50 years o/age are now routinely used, something that was considered outside of normal standards a few years ago. Selectively and carefully pushing the limits and testing hypothesis on the basis of clinical experience, published literature, and animal studies is necessary to advance transplantation.

However, the fear of failure and subsequent accusations of appropriateness may preclude advancement in clinical transplantation.

I witnessed this phenomenon at my center. Fortunately, with time these alterations in practice resolve, experience is incorporated, and per- haps an improved approach results.

Is there blame? I think not.

Transplantation physicians here and at other centers as a whole are working in the best interests of their patients and trying to be responsible to the donor families. The press is attempting to do its job and inform the public.

Nevertheless, the process and the results are painful and come at a cost. I have mentioned the effect on a specific center. However, others may look toward what has happened and question whether a similar situation could occur at their center. It is hoped that this leads to a positive outcome, in that self-reflection and analysis lead to increase vigilance, care, and perhaps research endeavors.

There may be a larger cost. Increased fear and psychological stress may occur in those patients considering" transplantation and in those already awaiting transplantation. One of the most important issues in thoracic transplantation is the limited availability of donors. What may be interpreted as negative publicity may lead to a decrease in the supply of donors. Families may question the intentions of the people requesting consent, and there may be concerns over inappropriate use of their loved one's organs.

A press report of possible inappropriate removal and sale of kidneys in Brazil, subsequently found to be without substance, was associated with a drastic decline in organ donation.

"On the contrary, data exist suggesting that organ donation can be positively influenced by publicity."

The publicity generated from the Transplant Games has been associated with increased organ donation, although the influence seems to be regional and is not sustained. Reflecting on the past year suggests that there are lessons to be learned.

Quality assurance programs with frequent morbidity and mortality assessments should be an integral part of transplantation programs. Accurate and detailed data collection are necessary to analyze any adverse outcomes and address concerns, both real and imagined.

Novel approaches and "pushing the limits" should be protocol based and approved through an ethics review board. Major research endeavors that clearly have the potential for moral and ethical controversies need to consider potential public conceals before initiation.

Although the physician as a scientist may believe that they work in their protected bubble and should proceed as long as institutional review boards have approved their work, the public's expectations and attitudes cannot be ignored. We do not work in isolation. There are levels of communities that deserve our consideration.

References 1. Garcia VD, Goldani JC, Neumann J. Mass media and organ donation. Transplant Proc 1996;29:1618-21. Slapak M, Taylor R, Parrott N, Griffin P. Do the transplant games help organ donation? Transplant Proc 1997;29: 1479-80. Armitage WJ, Rogers CA, Rissulsford MJ, Bradley BA Moss S J, Easty DL. Cornea donation boosted by positive publicity for transplantation. N Eng J Med 1991 ;338:1220. Journal of Heart and Lung Transplantation, Vol. 17, No. 7, July 1998 pp.654-55


Risk of Death or Incapacitation After Heart Transplantation, With Particular Reference to Pilots

David C. McGiffin, MD, David C. Naftel, PhD, Joseph L. Spann, MD, James K. Kirk/in, MD, James B. Young, MD, Robert C. Bourge, MD, and Roger M. Mills, Jr., MD, for the Cardiac Transplant Research Database ( CTRD )

Pilots who have received a heart transplant may subsequently want to resume flying.

This study was undertaken to determine whether a group of heart transplant recipients who had a particularly low risk of sudden unexpected death could be identified from clinical data.

An event, "rapid-onset death," was defined incorporating a number of possible causes of death that could result in a heart transplant recipient-pilot losing control of an airplane.

The survival of 3676 patients undergoing a first heart transplantation was 85% and 73% at 1 and 5 years, respectively, the hazard function having a high early phase of risk.

When time zero was moved to the beginning of the second year after transplantation, the freedom from "rapid-onset death" at post-transplantation year 2 and post-transplantation year 5 was 96.8% and 88%, respectively.

For patients who had both a "normal" coronary angiogram and no episodes of acute heart rejection during the first year transplantation, the probability of "rapid onset death" during the second post-transplantation year was 1.4%, and given the same circumstances, during the third post-transplantation year the risk of "rapid-onset death" was 1.6%.

This information is potentially useful to the Federal Aviation Administration for policy decisions regarding this issue.


PVCS

It was one of those rather rare one on one meetings with the long-term transplant patient and his clinical physician.

The type of meeting in which the patient is trying to draw out as much positive thinking and good words from the doctor about his case as possible.

One standard method is the use of the forced denial of a negative statement - i.e. "Doc, from what I heard the nurses saying during the angiogram, it sounds like I'm in pretty bad shape." Hopefully, Doc then responds with, "I don't know what you heard them saying, but I thought the pictures looked excellent, nothing to worry about."

We had reached the closing point of our meeting when I let fly with one more attempt to gather a rose from the bed of thorns that is the transplant' s life. I stated forlornly, "Well, for sure Doc, I'm well aware at my age, this heart's not going to last forever."

His immediate response: "Oh yes it will."

My comments of last month that not enough of the great improvements announced in the transplant field really ever become established took one real hit recently when the use of the PLC Corp. CO2 Laser treatment for coronary artery disease was approved for general use.

That's the procedure that drills small holes right in the heart itself to provide oxygenated blood to the muscle even if the arteries are blocked. I'll try and look up the nice gentleman heart transplant who underwent the treatment and reported to us now a couple of years ago and see how he's doing. I sure hope it's just fine.

In one of the sort of offbeat catalogs our household gets regularly, and thus keeps the Alaska clear cutting issue alive, I discovered the ultimate pillbox - again. This one is called the MediWatch and darned if it isn't a watch complete with alarm, but then when the bell rings, you pivot the watch up and a hidden pill compartment is revealed.

In addition, the write-up says there's even a hidden data card for recording all your medications and the time to take them. I don't have one .... yet, but the one potential drawback for some of us may be size, in that we need a mini-knapsack to carry a day's supply of reeds. with us.

It's called MediWatch and it's item #UWO 100 for $49.95 from InteliHealth Healthy Home at 1.800-988-1127.

If you tell them UpBeat sent you and they say, "Whom?" you've probably got the right number.


Doctors Warn Of Crisis In Organ Transplant Surgery

By Patricia Reaney

LONDON (Reuters 1129199) - British doctors warned Thursday that organ transplant surgery faced a crisis unless there were more donors and specialist surgeons.

A report by the Royal College of Surgeons said demand for organs was increasing while supplies were dwindling and not enough surgeons were choosing transplant work.

"It is not an exaggeration to say that the provision of organ transplantation as a service is on a knife edge," said Professor Peter Morris of the University of Oxford.

He told a news conference that the number of donors had declined in the past five years while waiting lists for livers, kidneys and hearts had continued to grow.

The problem was made worse by a shortage of trained transplant surgeons and the lack of a national strategy for organ transplants.

"We see very real concerns shortly ahead of us," said Dr Paul McMaster, a liver transplant surgeon in Birmingham. Morris said that ex- tremely long and often unsociable working hours and the demanding workload had made transplant surgery less exciting and glamorous for trainee doctors.

A shortage of donor organs meant that between 10-20 percent of patients on waiting lists either died while waiting for an organ or their health deteriorated to such an extent that a transplant was no longer possible.

Xenotransplantation, the use of animal organs or tissue in humans, had been suggested as a possible solution to the donor problems but Morris said it would not solve the immediate problem.

"We really feel that xenotransplantation is a long way in the future," he said. Instead, the surgeons' report called for a National Transplant Service, a campaign to increase the number of donor organs and better opportunities to entice more trainees into transplant surgery.

"We would like to see the computerized registry of all donors," Morris said.


Organ Transplant Drug Can Cause Cancer - Scientists

By Patricia Reaney

London (Reuters 2/11/99) - A drug used to suppress the immune system to prevent rejection of a transplanted organ may cause cancer, U.S. researchers said Wednesday.

Cancer is a common complication following transplant Surgery. Most doctors thought it occurred so often because the immune system was weakened by anti-rejection drugs and couldn't kill the cancerous cells.

But scientists at Cornell University in New York found that cyclosporine, one the most effective and common immunosuppressants, could cause tumors by increasing production of a protein that changes how cells behave.

"Our findings suggest that immunosuppressants like cyclosporine can promote cancer progression by a direct cellular effect that is independent of it effect on the host's immune cells," Dr. Minoru Hojo and his colleagues said in a letter to the science journal Nature.

The protein, called transforming growth factor beta (TGF-beta) makes cells change shape, divide and become invasive. When the researchers exposed cancerous cells to it in the laboratory, they changed and spread, but the changes were reversed when the scientists added an antibody that blocked the action of TGFbeta.

In addition to increasing the risk of cancer, the researchers showed the drug could exacerbate tumors in patients who already had cancer.

Gary Nabel, of the University of Michigan, said in a commentary on the research in Nature that the findings provide new insights into how cancer develops.

"The results could also provide a lead in the search for new immunosuppressive drugs that might be more selective," he added. Nabel said the research will also raise concerns about the use of the drug in transplant surgery, although the complications must be balanced against the lifethreatening need for a donated organ.

"The new observations do not alter the risk, nor do they suggest that any additional precautions be taken beyond those already recognized. But they do provide an insight into how these cancers come about, and may be useful in treating them," he added.

(Editor's Comment: Let's see from the patient's view this result would seem to mean, if you never have been prone to getting cancer, cyclosporine will do its best to make sure you do. If you might have been prone to cancer prior to transplant, cyclosporine will change your odds of getting it to almost 100%. For this we pay billions, and the spokesman for Novartis says, "We are not concerned. ")


Exercise Benefits Transplanted Hearts

BOSTON, 1/2799 (UPI) -- California researchers have shown for the first time that vigorous exercise is safe for heart transplant patients and it can significantly improve their hopes of living normal lives.

In the study of 27 patients, scientists led by Jon Kobashigawa of UCLA's School of Medicine found that patients who participated in a formal six-month exercise program developed stronger hearts than those given no structured training.

Patients were evaluated for strength, flexibility and heart function one month after the operation and again six months later.

One group had a supervised program of strength and flexibility exercises, along with aerobic workouts on a motorized treadmill or indoor bicycle.

Both groups were given written instructions for at-home exercises, which is the standard approach for all transplant patients, he says.

In the structured exercise group, there was nearly a 50 percent improvement in heart function-or aerobic ability-while the at-home exercisers had only an 18 percent improvement.

Kobashigawa says, "It almost doubled the amount of activity they were able to do."

The research is published in Thursday's issue of the New England Journal of Medicine. Kobashigawa says this study should help convince health care providers to cover exercise programs as a standard part of the rehabilitation of heart transplant patients.

(Reader Tx Jim Gleason of Collegeville, PA has supplied the original article. We'll see if more details can be gleaned from it next month. Ed.)


Transplant Fight

By Laura Meckler - Associated Press Writer

WASHINGTON (AP) -- Differences over how to allocate scarce organs for transplant should be settled through negotiations between the Clinton administration and the network that coordinates transplants, an influential House Republican said Wednesday.

"There's no reason they can't work this out," said Rep. John Porter, R-Ill, who said he does not want Congress to get involved this year as it did in 1998.

Last year, at the transplant network's urging, Congress twice delayed plans by the Health and Human Services Department to change the way organs are distributed.

HHS wants the United Network for Organ Sharing to remake the national allocation system, which relies heavily on geographic boundaries in distributing organs for transplant. Organs should go to the sickest patients who could reasonably benefit from a transplant, no matter where they live, HHS said in a regulation published last year.

The network, governed by representatives from across the transplant community, wants to keep the system the way it is. Furious that HHS was ordering it to make changes, the network persuaded Congress to delay the regulation, which is now on hold until the fall.

"I don't think there' s a legislative solution to this problem. It has to be negotiated out," Porter, chairman of the House Appropriations subcommittee that handles much of the HHS budget, told HHS Secretary Donna Shalala. She was before his subcommittee to discuss her department's budget request for 2000.

Shalala responded that she would like to negotiate a solution. We will work with the transplant community but we would very much appreciate you sending them a message at the same time that they need to work with us," she said.

The two sides met several times over the summer but have not talked since August. The network recently asked for another meeting but has not yet heard back from HHS, said Joel Newman, spokesman for the network.

"We would support and would look forward to additional discussions with HHS," he said.


Payton Spurs Organ Donation Interest

New York (AP) -- Hall of Fame running back Walter Payton said today that publicity about his need for a liver transplant is spurring interest all over the country in organ donations.

"Thousands of people are calling, finding out how to become donors," Payton said. His plight made people "realize that you never know what's going to happen."

Appearing on CBS' "This Morning," Payton seemed particularly pleased by a comment from Mike Ditka, who was his coach with the Chicago Bears and now is with the New Orleans Saints.

"He said the amazing thing is to be able to give life in death," Payton said. "And he stated that's the most precious thing in the world.

"And you know, from a coach ..... some- times he can be a little wise."

The 44-year-old Payton was diagnosed with a rare liver disease--primary sclerosing cholangitis--which blocks the bile ducts. Without a transplant, his doctor says he would live about two years. Payton said he has been holding up "real well" spiritually and mentally.

"As long as you have a good support team, it kind of makes things a lot easier to deal with. And, the outpouring of friends and people that I've never heard of, it's been very uplifting."

Unless Payton qualifies for rush status, he' s expected to wait 100 to 200 days for a liver at the Mayo Clinic, said John Wingate, a spokesman for LifeSource in St. Paul, which handles organ procurement for the upper Midwest.


Disclaimer: The material in this document has been collected by Don Marshall and friends. New ideas and materials are welcome all the time. Nothing herein is ever to be construed as medical advice. As a policy, UpBeat is sent upon request to heart and heart/lung transplant recipients and other interested parties. Donations of $15 per year, or more, from Tx recipients, if not a burden, are vital. From all others the donation is specifically requested. The date shown after the name on the address label indicates the last time a donation was received. Please make checks payable to Don Marshall, as we cannot afford to become nonprofit. Send materials, letters, or checks to:

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