The End of Life: Medical Considerations - Organ Transplantation

Most donated organs and tissues are transplanted from people who have died as a result of 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.

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 4.2 shows the organs and tissues transplantable with today's immunosuppressant drugs and technologies. 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 4.3 for the process of matching organ donors and recipients.) Today, organ transplant is an accepted medical treatment for end-stage illnesses.

TABLE 4.6
Number of doctors (and percent) responding that the known views of the patient, family members, and caregivers should influence the doctor's decision to withdraw artificial feeding, 1998

	Influence should be
Source of views	Decisive	Contributing	None
Patient
Advance directive	85 (41)	90 (43)	31 (15)
Previous informal expression of opinion	47 (23)	101 (49)	57 (27)
Family
Spouse	28 (13)	138 (66)	39 (19)
Parents	20 (10)	146 (70)	39 (19)
Family	7 (3)	88 (42)	110 (53)
Carers
Nurses	12 (6)	142 (68)	51 (25)
Other member of clinical team	24 (12)	140 (67)	43 (21)
General practitioner	20 (10)	147 (71)	40 (19)
Notes: "Decisive" an advance directive by the patient. "Contributing" the views of family and caregivers.
SOURCE: K. Dierickx, et al., "Table 6. Influence of Others on the Doctors' Decision to Withdraw Artificial Feeding," in "Belgian Doctors' Attitudes on the Management of Patients in Persistent Vegetative State (PVS): Ethical and Regulatory Aspects," Acta Neurochirurgica, vol. 140, no. 5, May 1998

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 6 to 48 hours of harvest, while some tissue may be stored for future use.

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 4.4.) UNOS reported that 85,406 people were waiting for a transplant in the United States as of May 2004. In the year ending June 30, 2001, more than 6,000 people died while awaiting a transplant because donor organs were not available.

Table 4.7 shows the waiting list for organs at the end of the year, from 1993 through 2002. "Total registrations" refers to all the registrations at any transplant center for any organ. 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 4.2
Transplantable organs

In 2002, 59.1 percent of all organs transplanted were kidneys, up slightly from 58.4 percent in 2000. Of the remainder, 20.6 percent were livers, down from 20.9 percent in 2000; 8.6 percent were hearts, down from 9.4 percent in 2000; 4.2 percent were lungs, as in 2000; 2.1 percent were pancreases, up from 1.8 in 2000; and less than 1 percent were intestines, about the same as in 2000. The remaining were multi-organ procedures, for a total of 24,544 transplants in 2002, up from 22,953 in 2000 and 17,532 in 1993. (See Table 4.8.) In this table "PTA" means "Pancreas Transplant Alone," "PAK" means "Pancreas after Kidney," and "KP" means "Kidney-Pancreas."

The number of all donors rose 65 percent between 1993 and 2002, from 7,766 to 12,800. While the number of deceased donors increased 27 percent, from 4,861 to 6,182, living donors showed a significant increase of 128 percent, from 2,905 to 6,618. (See Table 4.9.)

Organ Donation

The Uniform Anatomical Gift Act of 1968 gives a person the opportunity to sign a donor card indicating a FIGURE 4.2
Transplantable tissues FIGURE 4.3
Matching donors and recipients: The Organ Procurement & Transplantation Network (OPTN) and the Scientific Registry of Transplant Recipients (SRTR) FIGURE 4.4
Organ/tissue donor card, 2004 desire to donate organs or tissue after death. People who wish to be donors should complete a donor card (see Figure 4.4), which should be carried at all times. Alternatively, the wish to be a donor can be indicated on 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 indicated his or her wish to donate organs. Should the family refuse, the doctors will not take the organs, despite the deceased's wish. In 2002 most organ donors whose cause of death was known died of a stroke (42.4 percent) or head trauma (42.3 percent). Anoxia (lack of oxygen) was the cause of death of 12 percent of organ donors. (See Table 4.10.)

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 responsibility from hospitals to local organ procurement organizations because the hospitals were not doing the job. The Department of Health and Human Services estimates that 12,000 to 15,000 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.

In 1997, to promote awareness of organ and tissue donation, Congress 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.

State programs were also reinforced by a national organ donation initiative announced by Health and Human Services 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," by 2004 this coalition was made up of hundreds of organizations and businesses, including some of the largest U.S. employers: Aetna, American Airlines, Bank of America, Daimler-Chrysler, Ford Motor Company, General Motors Corporation, 3M, MetLife, and Verizon.

New Transplant Regulations Come and Go

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 Health and Human Services 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."

The new 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.

Anencephalic Newborns and Organ Transplantation

The scarcity of organs for infants and young children has led to a consideration of the possibility of harvesting

TABLE 4.7
United Network for Organ Sharing (UNOS) national patient waiting list for organ transplant, end of year, 1993–2002

	Year
	1993	1994	1995	1996	1997	1998	1999	2000	2001	2002
Total registrations	33,014	37,291	43,260	49,327	55,557	62,415	68,303	75,006	80,586	82,749
Organ type
Kidney	24,704	27,221	30,566	33,979	37,403	40,865	43,715	47,344	50,558	53,704
Pancreas transplant Alone	133	166	184	204	225	278	250	316	395	411
Pancreas after kidney	75	89	137	159	157	185	281	457	682	793
Kidney-pancreas	878	1,015	1,171	1,384	1,534	1,767	2,137	2,457	2,483	2,527
Liver	2,931	3,996	5,579	7,351	9,446	11,764	14,224	16,505	18,378	17,306
Intestine	43	73	82	81	92	97	107	145	173	188
Heart	2,816	2,900	3,427	3,649	3,832	4,094	3,974	3,994	3,954	3,818
Lung	1,237	1,628	1,910	2,281	2,636	3,111	3,387	3,584	3,754	3,804
Heart-lung	197	203	204	239	232	254	228	204	209	198
Total patients	31,694	35,788	41,613	47,488	53,482	60,003	65,471	71,909	77,334	79,387
Organ Type
Kidney	23,497	25,852	29,050	32,310	35,585	38,772	41,292	44,719	47,830	50,855
Pancreas transplant Alone	132	164	182	201	221	272	248	315	387	408
Pancreas after kidney	74	89	136	155	153	181	278	453	671	781
Kidney-pancreas	855	989	1,148	1,358	1,496	1,708	2,052	2,370	2,378	2,425
Liver	2,902	3,957	5,529	7,265	9,303	11,579	13,999	16,192	18,047	16,974
Intestine	42	71	82	81	89	95	107	144	170	187
Heart	2,798	2,891	3,419	3,640	3,817	4,079	3,951	3,978	3,934	3,803
Lung	1,202	1,574	1,865	2,241	2,590	3,066	3,321	3,536	3,708	3,756
Heart-lung	192	201	202	237	228	251	223	202	209	198
SOURCE: "Table 1.3. Waiting List at End of Year, 1993–2002," in OPTN/SRTR Annual Report 2003, The U.S. Organ Procurement and Transplantation Network and the Scientific Registry of Transplant Recipients, Richmond, VA, 2003

organs from anencephalic newborns—babies born without a major part of the brain, skull, and scalp who usually die shortly after birth. Organs must be removed while these newborns are still alive to avoid compromising the viability of the organs. In 1995 the Council on Ethical and Judicial Affairs of the American Medical Association, in "The Use of Anencephalic Neonates as Organ Donors" (Journal of the American Medical Association, vol. 273, no. 20, May 24/31, 1995), indicated its support for taking organs from anencephalic babies. This reversed the 1988 decision in which the council opposed taking organs from anencephalic babies.

While federal and state laws expressly forbid taking organs from live donors (except for special circumstances, such as a kidney or parts of the lung or liver, which donors are able to live without), the AMA claimed that this situation was unique because, unlike live adult donors, anencephalic neonates have never experienced consciousness and will never experience consciousness, and thus cannot have interests of any kind.

The AMA concluded that although an anencephalic neonate is still alive according to the current definition of death, it is ethically permissible to consider the baby as a potential organ donor under three conditions. First, the diagnosis of anencephaly must be certain and confirmed by two physicians who are not part of the transplant team. Second, the parents of the neonate must initiate any discussions about organ retrieval and indicate their desire in writing. Third, there must be compliance with the Council's Guidelines for the Transplantation of Organs.

Two-thirds of the ethicists and experts in anencephaly surveyed believed the use of organs from anencephalic newborns to be "intrinsically moral," and more than half would like to see the law changed to allow this procedure. Critics, however, charge that if organs can be removed from living anencephalic newborns, they could eventually also be removed from infants with other brain injuries, demented adults, and persons in PVS. Moreover, public confidence in the organ transplant system might be undermined in response to the fear that doctors would prematurely remove organs from dying patients.

THE AMA RECONSIDERS ITS OPINION.

In 1996 the Council on Ethical and Judicial Affairs of the AMA retracted its 1995 opinion supporting the retrieval of organs from anencephalic newborns (Letter to the Editor, The Journal of the American Medical Association, vol. 275, no. 6, February 14, 1996). Concerned about the understanding of consciousness and certain diagnoses of anencephaly in some newborns, the council reversed its opinion, maintaining that these infants should not be used for organ donation until a determination of death was made according to accepted medical standards, relevant law, and regional organ procurement organization policy. As of May 2004, the AMA still held this position.

TABLE 4.8
United Network for Organ Sharing (UNOS) transplants by organ and donor type, 1993–2002

	Year
Organ/donor type	1993	1994	1995	1996	1997	1998	1999	2000	2001	2002
All organs
Total	17,532	18,171	19,257	19,551	20,082	21,287	21,757	22,923	23,902	24,544
Deceased	14,634	15,084	15,788	15,794	16,045	16,765	16,810	17,081	17,359	17,934
Living	2,898	3,087	3,469	3,757	4,037	4,522	4,947	5,842	6,543	6,610
Kidney
Total	10,295	10,539	10,978	11,249	11,552	12,285	12,574	13,377	14,066	14,523
Deceased	7,444	7,532	7,596	7,593	7,630	7,889	7,910	7,955	8,065	8,287
Living	2,851	3,007	3,382	3,656	3,922	4,396	4,664	5,422	6,001	6,236
PTA
Total	41	37	37	45	63	72	123	119	128	141
Deceased	41	37	36	45	63	72	123	118	127	140
Living	–	–	1	–	–	–	–	1	1	1
PAK
Total	60	55	67	113	130	157	221	303	306	376
Deceased	58	55	67	112	130	157	221	303	306	376
Living	2	–	–	1	–	–	–	–	–	–
KP
Total	659	748	916	857	847	969	937	913	889	902
Deceased	659	746	910	847	841	967	930	907	886	902
Living	–	2	6	10	6	2	7	6	3	–
Liver
Total	3,367	3,548	3,828	3,930	4,012	4,370	4,602	4,794	4,986	5,060
Deceased	3,331	3,488	3,774	3,868	3,927	4,277	4,356	4,401	4,468	4,701
Living	36	60	54	62	85	93	246	393	518	359
Intestine
Total	13	6	22	15	22	28	31	29	42	44
Deceased	13	6	21	13	20	26	29	26	42	43
Living	–	–	1	2	2	2	2	3	–	1
Heart
Total	2,278	2,321	2,345	2,319	2,266	2,310	2,158	2,165	2,171	2,111
Deceased	2,276	2,318	2,345	2,318	2,266	2,310	2,158	2,165	2,171	2,111
Living	2	3	–	1	–	–	–	–	–	–
Lung
Total	667	722	871	813	930	866	890	958	1,054	1,041
Deceased	660	707	846	788	908	837	862	941	1,034	1,028
Living	7	15	25	25	22	29	28	17	20	13
Heart-lung
Total	60	71	69	38	61	46	51	46	27	31
Deceased	60	71	69	38	61	46	51	46	27	31
Living	–	–	–	–	–	–	–	–	–	–
Multi-organ
Total	92	124	124	172	199	184	170	219	233	315
Deceased	92	124	124	172	199	184	170	219	233	315
Living	–	–	–	–	–	–	–	–	–	–
Notes: (–)= None in category. 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.
PTA=Pancreas transplant alone
PAK=Pancreas after kidney
KP=Kidney/pancreas
SOURCE: "Table 1.8. Transplants by Organ and Donor Type, 1993–2002," in OPTN/SRTR Annual Report 2003, The U.S. Organ Procurement and Transplantation Network and the Scientific Registry of Transplant Recipients, Richmond, VA, 2003

Other Countries

Many European countries, including France and Belgium, procure organs under the "presumed consent" law, which presumes everyone is a potential organ donor unless he or she forbids it.

In the United States selling organs is unlawful under the National Organ Transplant Act of 1984. Organ markets, where people sell their organs to the affluent or to organ "brokers," exist in some developing countries, including Brazil and Turkey. In India, many hospitals and physicians deal in organ transactions, employing middlemen who buy organs from the poor.

In 1995 Chinese refugees testified before the U.S. Senate that condemned Chinese prisoners were shot and their organs sold for transplant. Kidneys and corneas were harvested annually from about 2,000 to 10,000 executed

TABLE 4.9
United Network for Organ Sharing (UNOS) organ donors by organ and donor type, 1993–2002

	Year
	1993	1994	1995	1996	1997	1998	1999	2000	2001	2002
All organs
Total	7,766	8,201	8,852	9,195	9,530	10,340	10,800	11,845	12,641	12,800
Deceased	4,861	5,099	5,363	5,418	5,479	5,794	5,824	5,986	6,081	6,182
Living	2,905	3,102	3,489	3,777	4,051	4,546	4,976	5,859	6,560	6,618
Kidney
Total	7,460	7,806	8,391	8,704	9,011	9,738	10,056	10,917	11,530	11,863
Deceased	4,609	4,797	5,003	5,038	5,083	5,338	5,386	5,490	5,528	5,630
Living	2,851	3,009	3,388	3,666	3,928	4,400	4,670	5,427	6,002	6,233
Pancreas
Total	1,245	1,362	1,296	1,302	1,328	1,464	1,635	1,708	1,818	1,871
Deceased	1,243	1,360	1,289	1,291	1,322	1,462	1,628	1,701	1,814	1,870
Living	2	2	7	11	6	2	7	7	4	1
Liver
Total	3,800	4,153	4,390	4,525	4,684	4,935	5,193	5,389	5,625	5,650
Deceased	3,764	4,093	4,336	4,463	4,599	4,844	4,945	4,995	5,107	5,292
Living	36	60	54	62	85	91	248	394	518	358
Intestine
Total	34	62	123	50	74	80	98	90	115	113
Deceased	34	62	122	48	72	78	96	87	115	112
Living	–	–	1	2	2	2	2	3	–	1
Heart
Total	2,444	2,528	2,491	2,463	2,426	2,449	2,315	2,283	2,275	2,221
Deceased	2,442	2,525	2,491	2,462	2,426	2,449	2,315	2,283	2,275	2,221
Living	2	3	–	1	–	–	–	–	–	–
Lung
Total	804	948	901	802	872	817	834	858	926	945
Deceased	790	918	856	757	836	764	778	824	887	920
Living	14	30	45	45	36	53	56	34	39	25
Donation after
cardiac death
Total	42	57	64	71	78	75	87	119	169	191
Deceased	42	57	64	71	78	75	87	119	169	191
Notes: (–) = None in category. (*) = Not collected. 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, 1993–2002," in OPTN/SRTR Annual Report 2003, The U.S. Organ Procurement and Transplantation Network and the Scientific Registry of Transplant Recipients, Richmond, VA, 2003

prisoners. The recipients were reportedly Chinese officials, as well as wealthy foreigners from Hong Kong, Britain, Japan, and the United States.

In June 1997 the Japanese parliament passed a bill defining brain death as death, thereby legalizing organ removal from those who are brain dead. Nonetheless, the issues of brain death and organ transplantation are so sensitive to the Japanese people that the law suggests that brain death may only be considered the end of life when donors have agreed with this definition and expressed their wishes in writing. The family's consent is needed to retrieve organs, and family members are allowed to dispute the diagnosis of brain death.

Although doctors in Japan have been performing procedures such as kidney transplants with organs from live donors, historically many Japanese patients traveled to other countries for heart or lung transplants when these organs were not readily available. The scarcity of donor organs was believed to reflect discomfort with the practice of harvesting donor organs from persons at the end of life.

The situation is slowly changing. By the end of 1999 more than 7 percent of Japan's population carried donor cards and more than half of the general population indicated a willingness to donate organs. Nonetheless, many observers of Japanese society believe that when the time comes to carry out a donor's wish, some families may be unable to comply and cultural tradition will prevail. Many Japanese find it unacceptable to "desecrate a body," especially one that is still breathing.

In 2002 Alireza Bagheri, et al., surveyed 383 Japanese graduate, medical, and nursing students about their knowledge, attitudes, and practice regarding brain death and organ transplantation ("Brain Death and Organ Transplantation: Knowledge, Attitudes, and Practice among Japanese Students," Eubios Journal of Asian and International Bioethics, vol. 13, 2003). Although 97 percent

TABLE 4.10
Deceased donor causes of death, 1993–2002, any organ

	Year
	1993	1994	1995	1996	1997	1998	1999	2000	2001	2002
Total	4,861	5,099	5,363	5,418	5,479	5,794	5,824	5,986	6,081	6,182
Cause of death
Anoxia	-	360	527	526	562	639	640	620	696	740
Cerebrovascular/stroke	-	1,417	2,052	2,270	2,236	2,478	2,506	2,614	2,630	2,623
Head trauma	-	2,019	2,618	2,456	2,487	2,497	2,426	2,522	2,548	2,612
CNS tumor	-	42	53	50	63	57	61	62	52	55
Other	-	81	98	86	109	88	171	167	152	150
Unknown	-	4	15	30	22	35	20	1	3	2
Different coding pre 4/94	4,861	1,176	–	–	–	–	–	–	–	–
Cause of death (%)
Anoxia	-	7.1%	9.8%	9.7%	10.3%	11.0%	11.0%	10.4%	11.4%	12.0%
Cerebrovascular/stroke	-	27.8%	38.3%	41.9%	40.8%	42.8%	43.0%	43.7%	43.2%	42.4%
Head trauma	-	39.6%	48.8%	45.3%	45.4%	43.1%	41.7%	42.1%	41.9%	42.3%
CNS tumor	-	0.8%	1.0%	0.9%	1.1%	1.0%	1.0%	1.0%	0.9%	0.9%
Other	-	1.6%	1.8%	1.6%	2.0%	1.5%	2.9%	2.8%	2.5%	2.4%
Unknown	–	0.1%	0.3%	0.6%	0.4%	0.6%	0.3%	0.0%	0.0%	0.0%
Different coding pre 4/94	100.0%	23.1%	–	–	–	–	–	–	–	–
Notes: (%) = Percentages are calculated based on totals including missing and unknown cases. (–) = None in category.
Includes donors of organs recovered for transplant and not used, as well as those transplanted. Not all recovered organs are actually transplanted.
SOURCE: Adapted from "Table 2.1. Deceased Donor Characteristics, 1993–2002 Deceased Donors of Any Organ," in OPTN/SRTR Annual Report 2003, The U.S. Organ Procurement and Transplantation Network and the Scientific Registry of Transplant Recipients, Richmond, VA, 2003

of the students knew that organ transplantation can save lives, and 60 percent believed that brain death is equal to human death, only 38 percent of the students realized that there is no treatment for brain-dead patients. In addition, 63 percent believed that organ removal from brain-dead donors is mutilation of the body. Nevertheless, 66 percent expressed their wish to be a donor, but only 31 percent had a donor card and 40 percent did not know how to get a donor card. Bagheri and colleagues concluded, "The high value of life among Japanese society and the willingness to be a donor bring hope that giving correct medical information and proper public education can increase social acceptance of organ transplantation from the brain dead in Japan."