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 MeritCare Kidney Services Nephrology, Dialysis, and Transplantation Conference
Thursday, September 14, 2006 Fargo, North Dakota
"Organ and Tissue Donation is a Message of Hope and a Promise of Life" Good afternoon! And thank you for that gracious introduction and warm welcome. It is a pleasure and a privilege for me to join you today at this conference on nephrology, dialysis, and transplantation. 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 your conference organizers for electing to close your conference with such a focus on what you do, on the human aspects of health and health care, on the continuum of health, as it affects those we serve. 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: wherein the health professional provides evidence-based medical and health advice, for the patient to consider and to become an active partner in determining a course of action. It is this partnership that is so basic to the future shape, effectiveness, and efficiency of our health system, as we work to protect and improve the health and safety of those we serve. 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 we serve. And I am pleased to see such a diversity of health professionals in attendance, because it is every single one of us. The Triad of Health Health is a triad: health of body, health of mind, and health of spirit. The three are intertwined, as science is increasingly finding and proving, and we must address all three to achieve full health: health of the physical body, mental health, and health of the spirit. Each is important to achieve the total health and overall well-being of each individual. 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; providing those we serve with the right information to make informed and healthy choices in their behavior and actions, and helping them realize that they will enjoy the benefits from good choices -- and suffer the consequences of bad ones; Second: public health preparedness: an all-hazards approach to preparing America to meet and overcome challenges to our health and safety, from those of human origin, such as chem, bio, and radiological terrorist threats, to those of emerging illnesses such as avian flu, to natural disasters such as hurricanes and floods. 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 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 - of body, of mind, of spirit --, and helping people find the information and develop the skills they need to live healthier lives. What we oftentimes label as non-compliance, or non-adherence to instructions or treatment, is sometimes nothing more than failure to communicate on the part of the professional, and/or failure or inability to understand on the part of those we serve. Basic health literacy becomes increasingly important as we move America from a 'treatment-based' disease care system to a 'prevention-based' health care system, and even further, to a health partnership. It is an issue not only for those we serve, but also for us professionals, health and caring, so 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, affecting rich and poor, young and old, black and white. 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 we serve, by helping to guide them, and helping them to better understand. Reviewing the Agenda As I reviewed your agenda over the past couple of days, I was heartened to see how it has meshed so well with these priorities. For example: - In prevention, you have discussed disease management, the impact of obesity on our society and our health, and our future;
- In health literacy, you have focused on effective patient communication, and the issues of patient safety and cognitive issues;
- In health of body, of mind, and of spirit, you have incorporated research and medical interventions, and also the medical care of the soul, and laughing for the health of it!
An Example: Organ and Tissue Donation and Transplantation Let me turn now to an example of the application of these themes: organ and tissue donation and transplantation, and its impact on people. The Data: A Disorder With A Solution Today, nearly 93,000 (92,700) 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. Ten years ago, in 1995, the waiting list was only 43,234 names long. And today, ten years later, it is nearly 93,000. But can we really imagine what 93,000 really means? As we begin our marathon pro football season, note that there is only one pro football stadium that holds more than 83,000 spectators: Fedex Field in Washington, DC, which holds 91,665. So when you watch the Redskins play, or rather your favorite team play the Redskins in DC, imagine that everyone in the stadium, filled to overflowing, is on that national waiting list, waiting for an organ transplant, waiting for an organ to transplant. And when you watch any other NFL team playing in its home stadium, imagine that stadium filled to overflowing even more, unable to contain the number of people waiting for a gift of life; with thousands and tens of thousands unable to even get into that stadium. 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.
There are not enough families who have known what their loved ones wanted on their deaths, and hence, these families were unable to carry out the final wishes of their loved ones, to be organ and tissue donors. 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 Last year (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 afternoon, 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: - Increasing awareness: assuring that as many people as possible are aware of the need for organ and tissue donation, and that they are aware that they have a choice!
- 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, in such a way as to maximize consent.
Family Consent Study An HHS study, and others which examined families who had faced real-life decisions about donation, confirm that most Americans would consent to donation, if they knew that their loved ones had requested it. Hence, the need to increase organ donor awareness, and to make certain that individuals discuss that decision with their families, "to share your life, and to share your decision." Initiatives Earlier today, you have heard, that over the past couple of years, due to a national initiative to increase donation, we have set new national records for donation across the country. After years of being relatively flat, organ donations have increased nearly 11% nationally in 2004. And in the first six months of 2005, organ donation has increased by an additional 8.8% -- a cumulative increase of nearly 20% in just a year and a half! These are not artifacts, but sustained increases! And many of you have been part of the National Organ Donation and Transplantation Collaborative, working with your hospitals and programs to help achieve this life-giving, life-saving goal, working with and within your communities to raise awareness of organ and tissue donation; and 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. 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. The lighting is soft; the chairs are comfortable. Right now, you need both. 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. She offers you coffee, access to a phone, and invites you to remain in the room, assuring you that she will keep you informed. She returns periodically to advise you of what is happening. It is not good. The trauma surgeon stops in. The team has stabilized vital functions, but there has been severe head trauma. The neurosurgeon is with your wife. 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. Shortly after, the nurse ombudsman returns again, and escorts you to the trauma room to see your wife, who has been cleaned from her injuries. It is a tragic moment Later, as you are leaving her side, the neurosurgeon joins you, walks down the corridor with you, and 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. You have to insist on someplace quiet to wait; not the busy and noisy ER waiting room. After uncountable minutes, you sense the beat of helicopter blades, and step out to find out if this is your daughter. No one knows. 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. You retreat to leave the professionals to do their job - to try to save your loved one. Your daughter has had severe head trauma. She is transported to the Intensive Care Unit. You ask the staff for access to a phone to call the rest of your family. They point you to the pay phone, in the middle of the busy hallway, next to the elevator. Of course, you don't have any change. The staff do provide you round-the-clock access to your daughter, despite the limited visiting hours. 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 ICP 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 argues, "I'm too busy to talk with the family. I have trauma to take care of." 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 OPO 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 and daughter 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. And during the several days we spent in the ICU until my daughter died, we observed more of the same. Ours was not an isolated experience. 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 OPO 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. Caring for all the patients is such a critical part of the human aspects of life and death - body, mind, and SPIRIT! 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. Fourteen years ago, my late wife, Donna Lee, died in a severe auto accident. We had talked long before about wanting to be organ donors when we died. I had the privilege of carrying out her wishes. And fourteen years ago, because of the decision she had made: - a police detective in Tampa, Florida, received a healthy heart, and a new lease on life for nearly seven years;
- a 35 year old diabetic hospital custodian in Washington, DC, received a pancreas and a kidney;
- a 12 year old boy who was on dialysis and failing in school received her other kidney;
- a retired schoolteacher in Pennsylvania received a fresh liver; and was able to spend Christmas again with her family. Although she did not survive long, she was able to enjoy a bit more of life, for herself and for others around her;
- a young woman in Baltimore, MD, received one cornea; and the other cornea provided new vision to a 49 year old government worker.
Four people came off that list of those waiting, because of one person. Donna Lee was simply an ordinary person, who accomplished extraordinary things. Without her generosity, as well as those of so many other donors, this would never have been possible. And we the family felt a sense of comfort in our grief, that out of our tragedy, some good would result - our loved one would leave a legacy of life. But that is not the end of the story. Ten years ago, my younger daughter, Vikki Lianne, only 22 years old at the time, was struck by an auto while crossing a street in Virginia. She suffered massive brain injury, and died after three days. We believed she would have wanted to be an organ donor, and so we made those arrangements. But candidly, we were hesitant, since we had never discussed this with each other. And how many of us have these kinds of discussions with our teenage offspring? Later, my older daughter, Erika, said to me, "Dad, we did the right thing." Because after Donna Lee had died, my two daughters had had several discussions about their own lives. And they noted how so many others had benefited from Donna's final gift, and how we, her family, had found such comfort in our loss. Vikki had stated to her sister that she too, wanted to be an organ donor. And they were both teenagers at that time. If our children can discuss these issues, why can't we do so as well. And because of Vikki: - a mother of five children from upstate New York received a heart and a new lease on life for herself and for her family;
- a widow with four children received her lung;
- a 59 year old man from Washington, DC, received her liver;
- a widower with one daughter received one kidney;
- a married working father of several children received the other kidney;
- a 26 year old man in Florida received one cornea; and a 60 year old woman in Pennsylvania received the other.
And another five people gained a new life from one person. All donor families are part of the generosity of their loved ones. 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 twenty people who will die today, before you go to sleep; and the twenty more 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, and to be active members of the team that protects and sustains body, mind, and spirit. 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 nearly 93,000 people who are still waiting. Fourteen years ago, Donna Lee Moritsugu died, and became an organ and tissue donor. And it was the right thing to do. Ten years ago, Vikki Lianne Moritsugu died, and became an organ and tissue donor. And it was the right thing to do. 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. As 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, as part of that health and healing of body, of mind, and of spirit. Thank you for realizing that families of those injured and dying are patients as well. Thank you for caring. As our health system continues to evolve, let's not forget that it is about people, and that people need to get involved in protecting and improving their own health; health systems need to improve access and understanding, and provide effective and efficient services; and we health professionals can and must be key players, every step of the way. Prevention, public health preparedness, eliminating health disparities; and improving health literacy, so people will understand how to make the right choices … As health professionals, we occupy a position of privilege in our society. Those we serve respect us, and hold us in their esteem. But with that privilege, comes responsibility - the responsibility to dignify the lives of those we serve, by protecting, safeguarding, and improving their health. Thank you, for being who you are, and for doing what you do - for life, every day! ### Last revised: January 20, 2009 |