Remarks at the TransLife Mini-Organ Donation Collaborative

Remarks as prepared; not a transcript.

RADM Kenneth P. Moritsugu, M.D., M.P.H
Acting Surgeon General
U.S. Department of Health and Human Services

Remarks at the TransLife Mini-Organ Donation Collaborative

Orlando, FL
Tuesday, March 27, 2007

"Raising the Awareness of Organ Donation"

Good afternoon! And thank you Dr. Metzger for that gracious introduction and warm welcome. (Dr. Robert Metzger, TransLife medical director)

It is a pleasure and a privilege for me to join you today. And it is a pleasure to join you who are so dedicated, as professionals, as individuals, to protecting and improving the health and well being of others.

I particularly want to thank TransLife for inviting me to be here and address the collaborative today.

Evolution of the Health System

Just as our society has evolved over time, our health system has evolved over the ages.

Until a few decades ago, we were focused on medical care: providing services AFTER disease or injury occurred.

In the past several decades, we have evolved to health care: the emphasis on prevention, as well as the provision of medical services.

But these have for the most part been the provision of care, the provision of services, BY a health professional TO a patient.

More recently, we have begun to focus on health -- as a partnership between the professional provider and his or her patient.

It is this partnership that is so basic to the future shape, effectiveness, and efficiency of our health system.

Inherent in this partnership is who should be integral members of the health team, striving to provide the best information, the best support, the best encouragement, to those whom we serve.

Surgeon General's Priorities

Our Office of the Surgeon General has identified three priorities in addressing health -- priorities I know we all appreciate and embrace:

First: prevention: helping Americans understand what they can do to prevent disease and to stay healthy

Second: public health preparedness -- an all-hazards approach to preparing America to meet and overcome challenges to our health and safety, such as those of human origin, an emerging illnesses or a natural disaster.

Preparedness is being ready, physically, mentally, and spiritually; being able to exercise public health principles and practices, and resiliency of mind and spirit.

Third: eliminating health disparities -- we note the disheartening data that too many of our people from minority groups still suffer from certain illnesses at a disproportionate rate. And it's intolerable that in a nation as wealthy as ours, there are people who cannot get the right care at the right time.

Importance of Health Literacy

Integral to this partnership for health, and an overarching issue for the Office of the Surgeon General, is the emerging recognition of the importance of health literacy.

Health professionals and everyone helping to protect and improve the health of others must do a much better job explaining the importance of healthy choices and helping people find the information and develop the skills they need to live healthier lives.

We CAN communicate the best science and information and recommendations in such a way that it can be heard, understood, embraced, and acted upon, ultimately to protect and improve health.

Low health literacy, or the inability to understand, access and use health-related information and services, is an equal opportunity public health threat.

People of all ages, races, incomes and education levels are challenged as they attempt to navigate America's complicated health care system, the most sophisticated in the world.

Consider the following examples from recent studies:

• One in four women who thought they understood a mammogram, did not.
• 42% of patients in a public hospital did not understand the labels on their prescription bottles.
• Fewer than half of low-literacy patients with diabetes know symptoms of hypoglycemia.

Patients with limited literacy may not understand even very common medical terms such as growth, lesion, polyp, screening, and tumor.

A recent Institute of Medicine Report highlights

• that low health literacy adds as much as $58 billion per year to health care costs, and
• that more than 90 million Americans cannot adequately understand basic health information.

Even the seemingly simple things that we can all do to stay healthy and safe, such as getting regular medical check-ups, eating healthy foods, and getting necessary shots, can be struggles for many families.

The reality is that to be able to do these things, we must have a basic infrastructure and understanding of why these choices are important to our health and safety, as well as our family's health and safety.

And each of you can have a major impact on the health and safety of those whom we serve, by helping to guide them, and helping them to better understand.

Organ and Tissue Donation and Transplantation

Let me turn now to why many of us are here today: we're here to discuss organ and tissue donation and transplantation, and its impact on people.

The Data: A Disorder With A Solution

Today, just over 95,000 (95,206) individuals are on the national list, waiting for a solid organ for transplantation, in order to save their lives or to improve the quality of their lives.

This list swells by more than 3,500 individuals every month. On the average, that means a new patient is added to the waiting list for a solid organ every 12 minutes; or nearly 120 more people, every day.

A little more than a decade ago, in 1995, the waiting list was only 43,234 names long. And today, 12 years later, it is a little more than 95,000. But can we really imagine what 95,000 really means?

That is enough to fill Orlando's Amway Arena five times. It holds just a little more than 17,000 people. That leaves another 10,000 who can't get in.

So next time you watch an Orlando Magic basketball game, imagine that arena filled five times, with people who are all on the national waiting list, waiting for an organ transplant, waiting for an organ to transplant.

There are thousands more, waiting for bone marrow, cornea, skin, and other tissue.

Last year, about 28,000 (28,110) individuals were fortunate enough to receive an organ transplant; fewer than 1 in 3 who are waiting.

Every day, 18 - 20 people die, waiting for a solid organ transplant, waiting for the donation of an organ to transplant, which does not come in time. One person, dying, about every hour and a half. In 2004, that amounted to over 7,300 who died - patients; people. And even in 2005, when donations increased dramatically, there were 6,498 who died waiting.

And the only reason these people are waiting, the only reason these people are dying, is because

• not enough of us have considered becoming organ and tissue donors,
• not enough of us have made the decision to donate,
• not enough of us have communicated to our loved ones and next of kin what our wishes are.
• not enough families have communicated to loved ones and next of kin what their wishes were

This is a public health issue, an issue that affects all of us.

Solutions

Organ donation and transplantation are messages of hope, because transplantation is the end-of-the-line option available to people who have exhausted other ways to save their lives.

In our great nation, we have brought organ transplants out of the experimental, into the community standard, with people living fruitful, productive lives for years, if not decades.

The one thing we lack is a sufficient number of organs to transplant, and that is dependent on a sufficient number of people, individuals generous enough to consider becoming organ and tissue donors, without whom nothing can happen.

Donation Data

In 2005, nearly 7,600 (7,593) individuals were generous enough to become organ and tissue donors on their death. But experts estimate that as many as 15,000 people who die each year, could be donors.

The good news is that in addition to those 7,600 individuals, nearly another 7,000 (6,896) more were living donors, heroes who truly gave of themselves, unselfishly.

Scientific Frontiers and Challenges

This topic is not without frontiers and challenges; for example:

• the issue of presumed consent, assuming YES, as is the case in several other countries, versus noting consent from a donor card or requesting consent from the next of kin - assuming NO;
• the issue of advertising for a donor match, versus using our current national system of listing and matching in priority order;
• the improved organ survival times after recovery, through the use of organ pumps, making organs available to people in a wider geographic area;
• frontiers in science, including the generation of new organs through culture;
• alternative solutions, such as mechanical organs, or xenotransplantation (organs and tissues from other than human species);
• cultural, religious, and geographic differences in attitudes and beliefs, affecting consent.

And in these areas, we all can and must participate in the thought process - and in finding solutions.

Organ Donation: The Final Common Pathway to Transplantation

What I'd like to discuss with you in more detail this morning, is the other side of the transplant equation: the final common pathway without which transplantation cannot occur: and that is organ donation.

Science and the medical profession continue to improve outcomes, with increasing survival post transplant. But over the years, what is still the rate-limiting factor is the availability of organs to transplant.

And what you do every day, as health professionals, as members of your community, has an impact, far beyond that which you would imagine.

Increasing Organ and Tissue Donation: Two Linked Strategies

I believe that increasing organ and tissue donation is predicated on two distinct but interrelated strategies:

1. Increasing awareness: assuring that as many people as possible are aware of the need for organ and tissue donation
2. Improving consent: based on increasing awareness, making sure that every family is presented the opportunity to donate the organs and tissues of their loved one on their death

One way our H-H-S Health Resources and Services Administration is raising awareness is by providing coaching and other logistical support to Donate Life America.

Donate Life is a nonprofit organization working to raise the number of Americans enrolled as designated organ donors to 100 million by June 2008.

My hope is that many of you will help us achieve that national goal.

Initiatives

Due to a national initiative to increase donation, the Organ Donation and Transplantation Breakthrough Collaborative is setting new national records for donation and transplantation across the country.

The Collaborative aims to improve donation protocols and practices with the goal of raising the average rate of organ donation in 1,000 of the nation's largest hospitals to 75 percent and to increase the average number of organs transplanted from each donor to 3.75.

I would like to congratulate the staff at three Orlando-area hospitals: O-R-H-S-Arnold Palmer Hospital; O-R-H-S Orlando Regional Medical Center; and the Lakeland Regional Medical Center

Each of these hospitals merited the H-H-S Organ Donation Medal of Honor in October 2006 for achieving and sustaining for a 12-month period a donation rate of 75 percent or higher. I was honored to lead last October's Medal of Honor ceremony and it is my privilege to once again honor these Orlando-area hospitals which are among the nation's organ donation leaders.

Their achievements prove that we can improve systems to increase donation rates.

And I know many of you have who are a part of your local Organ Donation and Transplantation Collaborative are working together to help achieve this life-giving, life-saving goal, working to assure that every family knows they have a choice when a loved one dies, to leave a legacy of life, by saying yes to donation.

When the HHS Organ Donation Medal of Honor is awarded in October 2007 at the National Learning Congress, I hope to see each and every one of your hospitals represented.

Awareness: A Partial Solution

But increasing donor awareness is only part of the total solution. It is an important part, so that people think about the choice they will have when a loved one dies, before the crisis.

But there is another part, the part that focuses on the moment of decision and actual donation.

In order to drive home how much what you do every day can make that life or death difference, let me try to personalize what you do, and put a human face to how you make that difference. Let me provide you a couple of hospital-based scenarios, that may help you better understand the importance of your roles, as critical members of an interdisciplinary team and approach.

The Human Aspect of Donation: Two scenarios

Imagine yourself in two different scenarios:

You are driving back home from a day of sightseeing with visiting relatives, when your pager goes off. You call your office. Your assistant informs you that there has been a terrible auto accident involving your wife. You immediately head to the hospital.

A nurse ombudsman meets you as soon as you walk in to the Emergency Room and identify yourself to the clerk. She escorts you to a small, quiet, private room off to the side.

She informs you that your wife has been severely injured.

There has been head trauma: the ER team is working on her and surgery and neurosurgery are involved.

A chaplain arrives and offers comfort.

The neurosurgeon enters, and describes what has happened. Your wife has sustained such severe head trauma, that while her heart is still beating, she has lost blood flow to the brain. She is dead.

The doctor remains to answer questions, then leaves you to your grief with your family, who has now gathered.

Later, the neurosurgeon gently raises the question of what you would like to do.

His question jogs your memory of an earlier discussion, years before, between you and your wife.

You each had decided to be organ donors on your deaths, and had discussed this with each other.

What would you do now?

###

Consider a second scenario: You are relaxing at home after dinner.

The phone rings. It is a hospital.

Your 22-year-old daughter has been struck by a car, and is med-evaced by helicopter to a nearby trauma center. She will arrive in about 20 minutes. You drive as carefully as you can in your shock to the trauma center, about 15 minutes away.

You arrive at the ER, and go to the clerk's desk. Without looking up at you, she brusquely states that she has no information about any young woman arriving by helicopter.

Shortly after, an ER nurse comes out to inform you that a "Jane Doe" is arriving, but she does not know if it is your daughter.

Finally an ER physician responds and states that a young woman has arrived with little information. The ER team is working on her. You push your way in and determine that the patient is in fact your daughter.

Your daughter has had severe head trauma. She is transported to the Intensive Care Unit.

Because of the trauma, her brain is swelling; there is little more the neurosurgeons can do. You wait, watching the intra-cranial pressure rise.

You have to request pastoral assistance. The staff state that it is after hours. Can't you wait till the next day? No, you insist! After a couple of hours, the on-call chaplain arrives.

The intra-cranial pressure has now risen to critical and terminal levels. Death is inevitable.

Your daughter's mother arrives after an exhausting 16 hour flight. Less than two hours later, the neurosurgeon, in the middle of the ICU, informs her that it is time to declare your daughter dead. He tells her that he has been keeping her alive until she arrived.

Later, after a brain flow study is done, the neurosurgeon again approaches, obviously prepared to announce the results to you and the family in the middle of the ICU. You have to insist on moving to the small private room for privacy.

He seems irritated at this unnecessary interruption of his day, announces his determination of death, and leaves.

When the trauma fellow is called to provide the second finding of death, he states over the phone that it is not necessary; he doesn't need to see the patient. He's busy with other trauma patients.

He has lives to save. Your daughter is dead.

The chaplain arrives to gently help you and your family through the transition of your daughter, from life to death.

Early on, realizing that your daughter might be an organ donor, you had asked that your local O-P-O be called. They now approach.

What would you do now?

==

These two scenarios, with some editorial license, actually happened. They happened to the same person. They both happened to me and to my family.

My wife, Barbara Lee, and my daughter, Vikki Lianne, died in separate auto accidents, four years apart.

I don't know how you see this, but in the first instance, we the family felt supported and comforted in our grief - by the entire team. And at the point of being asked whether we wanted to donate my wife's organs and tissue, we were prepared, inclined, and ready to do so.

In the second instance, we had already had the experience of donating our loved one's organs once before. And we were favorably inclined.

But as our time in the hospital went on, and we interacted with staff, we became increasingly negative to the "system" and its "people" and the way they were treating us.

Perhaps it was us, who were getting more frustrated and angrier in our grief. But perhaps it was not; perhaps it was in fact the natural and normal attitudes and behavior of the staff and the rest of the institutional environment, probably unintentional and totally transparent, in their efforts to save the patients under their care.

And in the latter scenario, I would guess, were we not already so strongly predisposed, we would have had a choice reply in response to a request for organ donation.

We all know of these and other scenarios,

• those we have heard of,
• those we have actually seen, and perhaps
• those in which we may have even been active participants.

These two scenarios are real. We all know that they happen every day.

With all the effort we pour into raising organ donor awareness, it ultimately comes down to the moment of decision, the moment when we approach the family to ask for organ donation.

And we can just about toss everything down the drain if we don't do a good job in this peri-donation environment, in better preparing the family for this moment, by treating them with dignity and respect.

And if, in the second case, we reacted with our emotions rather than with our heads, several people who could have been saved through the miracle of donation and transplantation would still be on that waiting list.

Or even worse, they would be dead, unsuccessfully having waited for that organ which never appeared.

My point is that, in our day to day efforts at saving lives, we must never forget that there are several patients, not only the ones lying in the emergency room or in the intensive care unit bed, but also those who are standing around that bed, the family. And that ALL the patients need care. And that every one makes a difference!

My point is that AWARENESS alone is not enough. Because it is ultimately the final DECISION that matters. And that decision can be so very much affected by the events surrounding a loved one's final moments.

It is so important to pay attention to the human aspects of donation, so that, if you cannot save the life of your patient, when the O-P-O approaches the grieving survivors to ask for organ and tissue donation, they will be better prepared to consider saying "Yes," and in so doing, they and you can help save and improve the lives of so many others.

The Personal Stories

There are many stories about donation and transplantation. Each one is special; each one is different. But what is common to all is the uncommon human generosity of each.

Because of Donna Lee, because of Vikki Lianne, and because of so many other organ and tissue donors, many others have gained, from a renewed life, and an improved quality of life.

This is a HUMAN issue, with HUMAN impact.

Impact on Many

Organ and tissue donation and transplantation affect many more than just the donors and the recipients.

It affects donor families, it affects transplant recipients, and it affects those waiting, for whom sometimes time runs out.

Each person whose life is improved, whose life is extended through transplantation, affects many others.

Like a pebble tossed into a pond, the ripples of life expand outward, affecting not just the donors and recipients, but families: mothers and fathers, brothers and sisters, sons and daughters, friends, colleagues, coworkers; and these in turn affect so many others, in ever expanding Circles of Life.

Donation and transplantation affect society, not just one person. We must make it happen! And you can help.

Consider the people who will die today, before you go to sleep; and those who will die tomorrow, and each day, waiting for an organ that will never arrive in time.

A Call To Action

Consider what you can do individually, and professionally, to prevent disease by helping those we serve make good choices for their health; to reduce the number of those dying while waiting for an organ transplant; to help make this Gift of Life happen, through raising awareness.

It is a public health issue.

Summary

We have made great strides in modern medicine, particularly over the past several years in the science of kidney diseases, in dialysis, in increasing organ and tissue donation, and in transplantation.

But there is still a great gap between the availability of organs, and the need. And we haven't come far enough for the more than 95,000 people who are still waiting.

Every day, someone dies who could be an organ donor.

Through the kindness of strangers, organ and tissue donation is a message of hope, it is the promise of life.

Through the efforts of people, of individuals, of ordinary people achieving extraordinary things, donation becomes possible, and transplantation becomes a reality.

Those of you who here today who are health professionals, you have an immense power.

You have an awesome responsibility.

These are the kinds of things you do every day, often without realizing how far your actions may reach; that in the death of some, life can become possible for others.

I encourage you to raise awareness, and to help offer to families whose loved ones have died, the opportunity and the choice to make a gift of life for others.

Thank you for realizing that families of those injured and dying are patients as well.

Thank you for caring, for being who you are, and for doing what you do - for life, every day!

Last revised: September 04, 2008