The End of Life: Medical Considerations - Organ Transplantation

Most organ and tissue donations are from people who have died as a result of brain injury and subsequent brain death. Once death is pronounced, the body is kept on mechanical support (if possible) to maintain the organs until it is determined whether the person will be a donor.

There are some organ and tissue donations that can come from living people. For example, it is possible to lead a healthy life with only one of the two kidneys that humans are born with, so people with two health kidneys will sometimes donate one to someone in need. Portions of the liver, lungs, and pancreas have also been transplanted out of a living donor, but this is less common. In most cases, living donors make their donations to help a family member or close friend.

Organ transplantation has come a long way since the first kidney was transplanted from one identical twin to another in 1954. The introduction in 1983 of cyclosporine, an immunosuppressant drug that helps prevent the body's immune system from rejecting a donated organ, made it possible to successfully transplant a variety of organs and tissues.

Figure 4.3 and Figure 4.4 show the organs and tissues transplantable with today's immunosuppressant drugs and technologies. The organs that may be transplanted from people who have died are the heart, intestines, kidneys, liver, lungs, and pancreas. Tissues that may be harvested for transfer include bone, cartilage, cornea, heart valves, pancreas islet cells, skin, tendons, and veins. Living persons may donate a kidney, parts of a lung or liver, or bone marrow. Typically, donated organs must be transplanted within six to forty-eight hours of harvest, while some tissue may be stored for future use.

Soon after organ transplantation began, the demand for donor organs exceeded the supply. In 1984 Congress passed the National Organ Transplant Act (PL 98-507) in order to create "a centralized network to match scarce donated organs with critically ill patients." (See Figure 4.5 for the process of matching organ donors and recipients.) Today, organ transplant is an accepted medical treatment for end-stage illnesses.

The United Network for Organ Sharing (UNOS), a private company under contract with the Division of Transplantation of the Department of Health and Human Services (HHS), manages the national transplant waiting list. It maintains data on all clinical organ transplants and distributes organ donor cards. (See Figure 4.6.) UNOS reported that 89,811 people were waiting for a transplant in the United States as of November 2005. In 2003, 7,147 people died while awaiting a transplant because donor organs were not available for them.

Table 4.5 shows the waiting list for organs at the end of the year, from 1994 through 2003. "Total FIGURE 4.3 Transplantable organs "3.1. Background: Transplantable Organs, "in Decision: Donation, U.S. Department of Health and Human Services, Health Resources and Services Administration, Healthcare Systems Bureau, Division of transplantation, 2004, http://www.organdonor.gov/student/docs/OrganDonorAllPages.pdf (accessed November 9, 2005)registrations" refers to all the registrations from all transplant centers for all organs. Therefore, this figure is larger than "total patients," which is the number of patients waiting for a transplant. An individual may show up as more than one registration in the "registrations" category because that individual may be registered at more than one transplant center or for more than one organ. However, individuals waiting for transplants are counted only once in the "total patients" category, but they may show up more than once in the listing of organ types under that heading if they need more than one organ.

FIGURE 4.4 Transplantable tissues "3.2. Background: Transplantable Tissues," in Decision: Donation, U.S. Department of Health and Human Services, Healthcare Systems Bureau, Division of Transplantation, 2004, http://www.organdonor.gov/student/docs/OrganDonorAllpage.pdf (accessed November 9, 2005)

FIGURE 4.5 Matching donors and recipients: The Organ Procurement & Transplantation Network (OPTN) and the Scientific Registry of Transplant Recipients (SRTR) *Questions and Answers about Organ Donation, U.S. Department of Health and Human Services, Health Resources and Services Administration, Division of Transplantation, n.d. Data updated as of October 2005.

In 2003, 59.2% of all organs transplanted were kidneys, up slightly from 58.4% in 2000. Of the remainder, 21.4% were livers, up from 20.9% in 2000; 8.1% were

FIGURE 4.6 Organ/tissue donor card U.S. Department of Health and Human Services, Healthcare Systems Bureau, Division of Transplantation, http://www.organdonor.gov/newdonorcard.pdf (accessed November 9, 2005)

TABLE 4.5 United Network for Organ Sharing (UNOS) and Scientific Registry of Transplant Recipients (SRTR) national patient waiting list for organ transplant, end of year, 1994–2003 "Table 1.3. Waiting List at End of Year, 1994 to 2003," in 2004 OPTN/SRTR Annual Report 1994–2003, Department of Health and Human Services, Health Resources and Services Administration, Healthcare Systems Bureau, Division of Transplantation, February 7, 2005, http://www.optn.org/AR2004/default.htm (accessed November 2, 2005)

TABLE 4.5
United Network for Organ Sharing (UNOS) and Scientific Registry of Transplant Recipients (SRTR) national patient waiting list for organ transplant, end of year, 1994–2003
	Year
	1994	1995	1996	1997	1998	1999	2000	2001	2002	2003
SOURCE: "Table 1.3. Waiting List at End of Year, 1994 to 2003," in 2004 OPTN/SRTR Annual Report 1994–2003, Department of Health and Human Services, Health Resources and Services Administration, Healthcare Systems Bureau, Division of Transplantation, February 7, 2005, http://www.optn.org/AR2004/default.htm (accessed November 2, 2005)
Total registrations	37,252	43,240	49,295	55,522	62,360	68,200	74,861	80,332	82,152	86,355
Organ type
Kidney	27,196	30,565	33,968	37,392	40,863	43,683	47,299	50,458	53,392	57,211
Pancreas transplant alone	166	183	204	225	278	248	313	391	406	455
Pancreas after kidney	89	137	159	157	186	283	460	685	796	935
Kidney-pancreas	1,015	1,166	1,377	1,530	1,756	2,136	2,453	2,476	2,514	2,472
Liver	3,993	5,576	7,346	9,438	11,744	14,183	16,448	18,285	17,122	17,515
Intestine	73	82	81	92	97	107	143	171	185	175
Heart	2,894	3,421	3,644	3,824	4,081	3,956	3,973	3,925	3,775	3,529
Lung	1,623	1,906	2,277	2,632	3,102	3,376	3,568	3,732	3,765	3,874
Heart-Lung	203	204	239	232	253	228	204	209	197	189
Total patients	35,751	41,592	47,456	53,445	59,947	65,362	71,752	77,065	78,781	82,885
Organ type
Kidney	25,827	29,046	32,298	35,569	38,765	41,253	44,665	47,717	50,535	54,231
Pancreas transplant alone	164	181	201	221	272	246	312	383	403	452
Pancreas after kidney	89	136	155	153	182	280	456	674	784	925
Kidney-pancreas	989	1,145	1,351	1,492	1,697	2,051	2,366	2,371	2,412	2,390
Liver	3,955	5,526	7,261	9,297	11,562	13,958	16,133	17,953	16,790	17,171
Intestine	71	82	81	89	95	107	141	168	183	172
Heart	2,885	3,413	3,635	3,810	4,066	3,933	3,957	3,905	3,760	3,519
Lung	1,570	1,861	2,237	2,586	3,058	3,311	3,520	3,685	3,717	3,836
Heart-Lung	201	202	237	228	250	223	202	209	197	189

hearts, down from 9.4% in 2000; 4.3% were lungs, nearly identical to 2000; nearly 0.5% were pancreas transplants alone, slightly less than in 2000; and only 0.2% were intestines, up from 0.1% in 2000. The remaining were multi-organ procedures, for a total of 25,076 transplants in 2003, up from 22,967 in 2000 and 18,172 in 1994. (See Table 4.6.)

The number of all donors rose 62% between 1994 and 2003, from 8,201 to 13,275 While the number of deceased donors increased 27%, from 5,099 to 6,455, living donors showed a significant increase of 120%, from 3,102 to 6,820. (See Table 4.7)

Organ Donation

The Uniform Anatomical Gift Act of 1968 gives a person the opportunity to sign a donor card indicating a desire to donate organs or tissue after death. People who wish to be donors should complete a donor card (see Figure 4.6), which should be carried at all times. Alternatively, the wish to be a donor can be indicatedon a driver's license or in a living will. Prospective donors should inform their family and physician of their decision. At the time of death, hospitals always ask for the family's consent, even if a donor has already indi-cated his or her wish to donate organs. Should the family

TABLE 4.6 United Network Organ Sharing (UNOS) and Scientific Registry of Transplant recipients (SRTR) transplants, by organ and donor type, 1994–2003 "Table 1.7. Transplants by Organ and Donor Type, 1994 to 2003," in 2004 OPTN/SRTR Annual Report 1994–2003, Department of Health and Human Services, Health Resources and Services Administration, Healthcare Systems Bureau, Division of Transplantation, February 7, 2005, http://www.optn.org/AR2004/default.htm (accessed November 2, 2005)

TABLE 4.6
United Network Organ Sharing (UNOS) and Scientific Registry of Transplant recipients (SRTR) transplants, by organ and donor type, 1994–2003
Organ/donor type	Year
	1994	1995	1996	1997	1998	1999	2000	2001	2002	2003
*None in category.
Notes: An organ that is divided into segments (liver, lung, pancreas, intestine) is counted once per transplant. Kidney-pancreas and heart-lung transplants are counted as one transplant. Other multiple organ transplants are counted only in the multiple organ row.
SOURCE: "Table 1.7. Transplants by Organ and Donor Type, 1994 to 2003," in 2004 OPTN/SRTR Annual Report 1994–2003, Department of Health and Human Services, Health Resources and Services Administration, Healthcare Systems Bureau, Division of Transplantation, February 7, 2005, http://www.optn.org/AR2004/default.htm (accessed November 2, 2005)
All organs
Total	18,172	19,260	19,556	20,090	21,299	21,803	22,967	23,918	24,548	25,076
Deceased	15,085	15,790	15,790	16,049	16,766	16,817	17,094	17,360	17,936	18,270
Living	3,087	3,470	3,762	4,041	4,533	4,986	5,873	6,558	6,612	6,806
Kidney
Total	10,540	10,980	11,255	11,557	12,298	12,612	13,407	14,076	14,524	14,853
Deceased	7,533	7,597	7,593	7,632	7,890	7,915	7,958	8,065	8,288	8,389
Living	3,007	3,383	3,662	3,925	4,408	4,697	5,449	6,011	6,236	6,464
Pancreas transplant alone
Total	38	37	45	64	72	123	119	128	140	117
Deceased	38	36	45	64	72	123	118	127	139	117
Living	*	1	*	*	*	*	1	1	1	*
Pancreas after kidney
Total	54	67	113	130	157	221	303	306	376	343
Deceased	54	67	112	130	157	221	303	306	376	343
Living	*	*	1	*	*	*	*	*	*	*
Kidney/pancreas
Total	748	916	857	847	969	939	913	889	902	868
Deceased	746	910	847	841	967	931	907	886	902	865
Living	2	6	10	6	2	8	6	3	*	3
Liver
Total	3,548	3,829	3,930	4,015	4,369	4,605	4,802	4,984	5,060	5,364
Deceased	3,488	3,775	3,868	3,929	4,277	4,354	4,407	4,466	4,699	5,044
Living	60	54	62	86	92	251	395	518	361	320
Intestine
Total	6	22	15	23	28	31	30	42	42	52
Deceased	6	21	13	21	26	29	27	42	41	48
Living	*	1	2	2	2	2	3	*	1	4
Heart
Total	2,321	2,346	2,319	2,267	2,310	2,157	2,167	2,171	2,112	2,024
Deceased	2,318	2,346	2,318	2,267	2,310	2,157	2,167	2,171	2,112	2,024
Living	3	*	1	*	*	*	*	*	*	*
Lung
Total	722	871	812	930	866	891	959	1,059	1,041	1,080
Deceased	707	846	788	908	837	863	940	1,034	1,028	1,065
Living	15	25	24	22	29	28	19	25	13	15
Heart-lung
Total	71	69	38	62	46	51	46	27	31	28
Deceased	71	69	38	62	46	51	46	27	31	28
Living	*	*	*	*	*	*	*	*	*	*
Multi-organ
Total	124	123	172	195	184	173	221	236	320	347
Deceased	124	123	172	195	184	173	221	236	320	347
Living	*	*	*	*	*	*	*	*	*	*

refuse, the doctors will not take the organs, despite the deceased's wish. In 2003 most organ donors whose cause of death was known died of a stroke (42.7%) or head trauma (40.5%). Anoxia (lack of oxygen) was the cause of death of 13.2% of organ donors. (See Table 4.8.)

In 1986 the Consolidated Omnibus Budget Reconciliation Act (PL 99-509) required all hospitals receiving federal funding to adopt procedures to identify potential organ donors and notify families of their option to donate. In June 1998 the government transferred this

TABLE 4.7 United Network for Organ Sharing (UNOS) and Scientific Registry of Transplant Recipients (SRTR) organ donors, by organ and donor type, 1994–2003 "Table 1.1. U.S. Organ Donors by Organ and Donor Type, 1994 to 2003," in 2004 OPTNISRTR Annual Report 1994–2003, Department of Health and Human Services, Helath Resources and Servies Administration, Healthcare Systems Bureau, Division of Transplantation, February 7, 2005, http://www.optn.org/AR2004/default.htm (accessed NOVEMBER 2, 2005)

TABLE 4.7
United Network for Organ Sharing (UNOS) and Scientific Registry of Transplant Recipients (SRTR) organ donors, by organ and donor type, 1994–2003
	Year
	1994	1995	1996	1997	1998	1999	2000	2001	2002	2003
*None in category
Notes: Includes only organs recovered for transplant. The number of transplants using living donors may be different from the number of living donors. This is because there is a small number of multi-organ living donors and multiple donors for one transplant. For example, a living donor might donate a kidney and pancreas segment; or two living donors might each donate a lung lobe for one transplant procedure. A donor of an organ divided into segments (liver, lung, pancreas, intestine) is counted only once for that organ. A donor of multiple organs is counted once for each organ recovered. Donors after cardiac death are included in the deceased donor counts as well and are counted separately on the last line.
SOURCE: "Table 1.1. U.S. Organ Donors by Organ and Donor Type, 1994 to 2003," in 2004 OPTNISRTR Annual Report 1994–2003, Department of Health and Human Services, Helath Resources and Servies Administration, Healthcare Systems Bureau, Division of Transplantation, February 7, 2005, http://www.optn.org/AR2004/default.htm (accessed NOVEMBER 2, 2005)
All organs
Total	8,201	8,854	9,200	9,534	10,352	10,837	11,875	12,662	12,811	13,275
Deceased	5,099	5,363	5,418	5,479	5,794	5,824	5,985	6,080	6,187	6,455
Living	3,102	3,491	3,782	4,055	4,558	5,013	5,890	6,582	6,624	6,820
Kidney
Total	7,806	8,393	8,709	9,014	9,749	10,090	10,944	11,542	11,872	12,221
Deceased	4,797	5,003	5,038	5,083	5,338	5,386	5,489	5,528	5,636	5,754
Living	3,009	3,390	3,671	3,931	4,411	4,704	5,455	6,014	6,236	6,467
Pancreas
Total	1,362	1,296	1,302	1,328	1,464	1,636	1,710	1,822	1,873	1,777
Deceased	1,360	1,289	1,291	1,322	1,462	1,628	1,703	1,818	1,872	1,774
Living	2	7	11	6	2	8	7	4	1	3
Liver
Total	4,153	4,390	4,525	4,685	4,936	5,198	5,392	5,624	5,654	6,000
Deceased	4,09	4,336	4,463	4,599	4,844	4,947	4,997	5,106	5,293	5,680
Living	60	54	62	86	92	251	395	518	361	320
Intestine
Total	62	123	50	74	80	98	90	115	113	126
Deceased	62	122	48	72	78	96	87	115	112	122
Living	*	1	2	2	2	2	3	*	1	4
Heart
Total	2,528	2,491	2,463	2,426	2,449	2,316	2,283	2,276	2,222	2,121
Deceased	2,525	2,491	2,462	2,426	2,449	2,316	2,283	2,276	2,222	2,121
Living	3	*	1	*	*	*	*	*	*	*
Lung
Total	948	901	802	872	817	834	861	936	945	991
Deceased	918	856	757	836	764	778	825	887	920	962
Living	30	45	45	36	53	56	36	49	25	29
Donation after cardial death
Total	57	64	71	78	75	87	119	169	189	271
Deceased	57	64	71	78	75	87	119	169	189	271

responsibility from hospitals to local organ procurement organizations because the hospitals were not doing the job well. The HHS estimates that twelve thousand to fifteen thousand potential organ donors die each year whose families are never asked to donate their loved ones' organs. Under the new procedure, hospitals are required to report every death to the procurement organizations.

To promote awareness of organ and tissue donation, Congress in 1997 authorized the Internal Revenue Service (IRS) to include organ and tissue donor information with federal tax refund checks. In another effort to increase public support for organ donation, the U.S. Postal Service introduced a new stamp in 1998 showing two intertwined figures, their hands reaching to touch each other's hearts.

By 2001 demand continued to outpace the supply of available organs and tissues for transplants. Governors of many states began a variety of programs aimed at increasing public awareness of the lack of donor organs and honoring people who have chosen to become donors. For example, Alabama Governor Don Siegelman created an Alabama Donor Registry; Georgia Governor Roy Barnes designated March 2001 as Eye Donor Month; and Utah Governor Michael O. Leavitt and his state's legislature adopted a resolution to improve public awareness about organ and tissue donation. Governors of at least nine states forged partnerships with local advocacy, medical, religious, and business groups to strengthen support for transplant programs.

TABLE 4.8 Deceased organ donor causes of death, 1994–2003, any organ Adapted from "Table 2.1 Deceased Donor Charactersistics, 1994 to 2003 Deceased Donors of Any Orgasn," in 2004 OPTN/SRTR Annual Report 1994–2003, Department of Health and Human Services, Health Resources and Services Administration, Healthcare Systems Bureau, Division of Transplantation, February 7, 2005, http://www.optn.org/AR2004/default.htm (accessed November 2, 2005)

TABLE 4.8
Deceased organ donor causes of death, 1994–2003, any organ
	Year
	1994	1995	1996	1997	1998	1999	2000	2001	2002	2003
aPercentages are calculated based on totals including missing and unknown cases.
bNone in category.
Notes: Includes donors or organs recovered for transplant and not used, as well as those transplanted. Form changes on April 1, 1994 changed the way cause of death was calculated. Not all recovered organs are actually transplanted.
SOURCE: Adapted from "Table 2.1 Deceased Donor Charactersistics, 1994 to 2003 Deceased Donors of Any Orgasn," in 2004 OPTN/SRTR Annual Report 1994–2003, Department of Health and Human Services, Health Resources and Services Administration, Healthcare Systems Bureau, Division of Transplantation, February 7, 2005, http://www.optn.org/AR2004/default.htm (accessed November 2, 2005)
Total	5,099	5,363	5,418	5,479	5,794	5,824	5,985	6,080	6,187	6,455
Cause of death
Anoxia	360	527	526	562	639	640	619	697	741	855
Cerebrovascular/stroke	1,417	2,052	2,270	2,236	2,478	2,509	2,612	2,631	2,627	2,757
Head trauma	2,019	2,618	2,456	2,489	2,497	2,429	2,520	2,545	2,610	2,614
Central nervous system tumor	42	53	50	63	57	61	62	52	56	48
Other	81	98	86	109	88	171	171	154	153	175
Unknown	4	15	30	20	35	14	1	1	b	6
Different coding pre 4/49	1,176	b	b	b	b	b	b	b	b	b
Cause of death (percentages)a
Anoxia	7.1%	9.8%	9.7%	10.3%	11.0%	11.0%	10.3%	11.5%	12.0%	13.2%
Cerebrovascular/stroke	27.8%	38.3%	41.9%	40.8%	42.8%	43.1%	43.6%	43.3%	42.5%	42.7%
Head trauma	39.6%	48.8%	45.3%	45.4%	43.1%	41.7%	42.1%	41.9%	42.2%	40.5%
Central nervous system tumor	0.8%	1.0%	0.9%	1.1%	1.0%	1.0%	1.0%	0.9%	0.9%	0.7%
Other	1.6%	1.8%	1.6%	2.0%	1.5%	2.9%	2.9%	2.5%	2.5%	2.7%
Unknown	0.1%	0.3%	0.6%	0.4%	0.6%	0.2%	0.0%	0.0%	b	0.1%
Different coding pre 4/94	23.1%	b	b	b	b	b	b	b	b	b

State programs were also reinforced by a national organ donation initiative announced by HHS Secretary Tommy G. Thompson in April 2001. Secretary Thompson called upon powerful alliances between employers and unions to promote donation. Called the "Workplace Partnership for Life," this coalition by 2004 was made up of hundreds of organizations and businesses, including some of the largest U.S. employers: Aetna, American Airlines, Bank of America, DaimlerChrysler, Ford Motor Company, General Motors Corporation, 3M, MetLife, and Verizon.

Transplant Regulations

In March 1998 the Clinton administration ordered UNOS to change its organ allocation policy. The network fought the new rules for two years in favor of the system already in place, which was based on geography. When an organ became available in a local area, that organ was offered to the sickest patient in that area. If no local patient needed the organ, it was then offered regionally, and last of all, nationally. The government, however, wanted organs to be given to the sickest patients first, regardless of geographic location. Secretary of HHS in the Clinton administration, Donna Shalala maintained, "People are dying unnecessarily, not because they don't have health insurance, not because they don't have access to care, but simply because of where they happen to live in the country. We need a level playing field for all patients."

A system based on need rather than location took effect in March 2000, although the issue of precisely who would decide the allocation of organs remained unresolved until April 2000, when the U.S. House of Representatives passed a proposal to restore decision making to UNOS, where it has remained.