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Arrange for Regional Organ Procurement Organization to Address the Issue With the Patient's Family

Task 2 : Appraise current policies and the potential touch of the Final Rule on organ donation rates, the reasons for differences in organ donation rates and the affect of broader sharing (that is, based on medical criteria instead of geography), on donation rates.

Abstract . Many factors unrelated to the size of organ allocation areas affect organ donation rates. Based on the limited data available, the committee found no convincing evidence to back up the claim that broader sharing would adversely bear upon donation rates or that potential donors would decline to donate because an organ might be used outside the immediate geographic area. In fact, there is some prove suggesting that broader sharing is associated with increased rates of donation, although the reasons for this are non clear. Regardless of the bear on of the size of the allocation area on donation rates, electric current efforts to increment donation seem to exist having a positive effect and should be encouraged to continue.

The organ procurement and transplantation procedure begins at the infirmary when a patient is identified as a potential organ donor. Nigh donated organs come up from patients who are pronounced brain dead as a result of illness or injury, most notably, brain hemorrhage and injuries from motor vehicle crashes, gunshot or stab wounds, or asphyxiation (UNOS, 1999). Once a potential donor has been identified, someone from the infirmary or an organ procurement arrangement (OPO) typically contacts the donor'due south family. If the family consents to donation, OPO staff coordinates the residual of the procurement activities, from organ recovery and preservation to transport to a transplant center for transplantation. The system by which organs are procured and transplanted includes many participants, including the family of the organ donor, the procuring surgeon, the OPO, the Organ Procurement and Transplantation Network (OPTN) operated by the United Network for Organ Sharing (UNOS), the transplant surgeon, the hospital staff, and the organ recipient.

The task of the commission with regard to organ donation was to make up one's mind what touch on current allotment policies might have on organ donation rates and to assess the potential consequences of broader sharing of organs in larger geographic areas. The commission was non charged with solving the problem of the need for more donation, but instead, with determining the factors affecting donation that might exist influenced past the Terminal Rule. This chore is difficult because of the many elements that affect donation and the limited amount of published literature on this subject.

Among the many factors affecting donation are donor family unit motivation and OPO procurement practices, both having potentially pregnant influence on the number of organs actually recovered. Thus, for example, a highly motivated family might not exist approached in a health care facility that does not actively pursue organ procurement. Conversely, clashing or unaware potential donor families could exist persuaded to donate by health care providers trained in the appropriate procedures for actively pursuing organ procurement. Trying to parse out the relative contributions of donation versus procurement to organ availability rates is circuitous and few reliable data exist documenting the relative effects of either gene. To attribute whatever one factor—for case, local allocation policies—to potential changes in donation rates is overly simplistic.

Nevertheless a central effect for opponents of broader sharing is that it volition reduce organ donation considering people will be less motivated to donate if the organs are not used locally. They as well claim that health professionals volition be less motivated to procure organs, knowing that they volition non necessarily be used locally. Proponents of broader sharing argue that the changes in policy will not adversely affect donation rates because people are not motivated to donate for the purpose of local employ.

Current Status

Despite the increasing numbers of patients in need of organ transplantation, its potential to relieve lives is express by the shortage of suitable organs for transplantation, National estimates of the number of potential organ donors vary widely, from 5,000 to 29,000 (Association of Organ Procurement Organizations, 1997; UNOS, 1998). In 1996 the number of medically suitable potential donors was estimated at 13,700 (Gortmaker et al., 1996), and in 1997 a review of medical records in hospitals in iv regions of the United States estimated the pool to be between 12,000 and fifteen,000 annually (McNamara et al., 1997). Given that there were nigh five,800 cadaveric donors in 1998, these studies advise that less than half of the nation'south donor potential is currently being realized (McNamara and Beasley, 1997). Living donation is an boosted selection for centers that wish to increment the number of some solid organ transplant procedures (primarily kidney, although in some cases liver or lung).

In mid-April 1999, the U.S. Department of Health and Human Services (DHHS) and the United Network for Organ Sharing (UNOS) announced preliminary information showing that cadaveric donations increased five.6 percentage from 5,478 donors in 1997 to v,794 donors in 1998, the first substantial increase since 1995 (DHHS, 1999a). Although donors increased in all age ranges, the greatest increase was among older donors. Donors age threescore or older increased by 10.8 pct; donors ages forty to 59 increased by 9.half-dozen percentage; those ages 20 to 39 increased by two.4 percent; and donors under age 19 increased by but 1.vi percent.

Rates of donation differed among racial and indigenous groups. There were substantial increases in the number of Caucasians (upwardly 6.half-dozen percent) and Hispanics (upwards 7.8 percentage), but for this one year time period, the number of African American donors remained relatively unchanged and the number of Asian donors decreased by eight.4 pct (DHHS, 1999a). Interestingly, donation rates increased in areas of the state that participate in broader sharing of organs (UNOS Regions ten, eight, and 4) although the meaning of this is unclear (DHHS, 1999a).

Although some of these data testify promising upward trends, the number of donations is withal far brusque of what is needed to run across the growing demand. Moreover, it is non clear how much of the overall increment in donations is due to a liberalization of donor criteria, to better public teaching and understanding, or to increased procurement efforts by hospital and OPO personnel.

In the same period that overall donation rates increased, waiting list registrations climbed substantially, from 56,716 to 64,423 (DHHS, 1999a). Thus, even if donation rates continue to increment, the demand will probable continue to outstrip the supply, necessitating careful attending to the problems of donation, equitable admission, and allocation.

Correlates of Donation

As mentioned higher up, organ donation rates vary, in function, as a function of sociodemographic factors. These include cultural attitudes, the age and race of the donor, the progression of illness in the donor, the attitudes of the donor'south family, the mode in which individuals are approached, and the policies and practices of hospital staff and organ procurement organizations (OPOs). For example, information technology appears that higher donation rates are achieved when requests are made past the staff of the OPO working with the patient's doc or nurse, rather than by infirmary staff alone (Gortmaker et al., 1998). Involving medical social workers and clergy also has a positive influence on rates of consent for donation (Siminoff et al., 1995).

Age and race are also associated with rates of donation. The families of potential donors who are less than 50 years onetime are v times more likely to agree to donate organs than families of potential donors over lx, although this difference may be due in large part to the way the families are approached and data is provided, rather than being a directly office of the age of the patient (Gortmaker et al., 1996).

Organ donation is non every bit mutual in the African American customs every bit it is in others. In a study comparing African Americans and whites (see likewise Chapter 3), it was suggested that African Americans may be merely half as likely to donate as whites, because they are less likely to be asked, and because health care professionals do non ask them for consent in an constructive way (Ehrle et al., 1999; Gortmaker et al., 1996; Randall, 1996). Another reason for lower donation rates inside the African American customs may be distrust of the organization that stems in part, from reports such equally those that report African Americans with end-stage renal disease are more than likely to expect longer, less likely to receive a transplant, and take less successful posttransplant outcomes than whites (Eggers, 1995; likewise run across Gaylin et al., 1993; Held et al., 1988; Kallich et al., 1990; Kjellstrand, 1988; Sanfillippo et al., 1992). Knowledge and perceptions about these racial disparities affects the attitude towards organ donation in the African American community (Kasiske et al., 1991).

Public and Professional Attitudes

At that place are few data bachelor to determine with confidence the effects of organ allocation policies on donation rates. However, a July 1998 Gallup Poll conducted for the National Transplant Action group examined adults' attitudes toward organ allocation policies and their furnishings on organ donation (Gallup Organization, Inc., 1998). The written report constitute that 75 per centum of respondents reported information technology would brand no difference in their decision to donate to know that the organ would go to a more seriously ill person elsewhere in the U.s.a. earlier being offered to a less sick person within the local region (see Box 4-ane).

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BOX 4-1

Extract from the 1998 Gallup Poll on Organ Donation. Question 4: "Thinking every bit if you were going to exist an organ donor, if you learned that your organs would go to ill persons inside your local region before they were offered to sicker persons elsewhere (more...)

Another poll conducted by Southeastern Institute of Enquiry (1994) reported similar findings. Respondents who were not donor carte du jour signers were asked which of 2 policies would have the strongest influence on their becoming an organ donor: 1 that keeps organs locally for local patients or 1 that ships organs nationally for all patients. Only 19 percent said that the local policy would have the strongest influence; 66 pct chose the national policy; and 13 percent said neither policy would influence them.

Equally stated in the preamble to the Terminal Rule, "DHHS has seen no credible evidence that local preference encourages donation or that sharing organs regionally or nationally for the sickest patients will impact organ donation. Nor is there whatever evidence that transplant professionals perform differently when the retrieval is for a distant patient rather than a local patient" (DHHS, 1998b).

Testimony presented to the committee during the public meeting on April 16, 1999, by representatives from customs hospitals supported this view, indicating that health professionals at the bedside are non aware of the destination of a procured organ and practice non consider this in performing their duties. Others voiced opinions that some families of potential donors would not concord to donate if the organs were sent out of state. About agreed, however, that families want organs to become to the patients most in need, preferably within the state, but inside a broader region if this is where the most medically urgent patient is located.

Finally, preliminary information on organ donation rates seem to behave out the notion that local use does not necessarily improve donation rates. Although, as shown in Tables 4-one and 4-2, the overall number of cadaveric donors rose in 1998 by approximately 6 pct, the largest increase (13 percent) occurred in UNOS Region 10 (Michigan, Indiana, and Ohio) (DHHS, 1999a; UNOS, 1999)-a region that recently instituted a voluntary regional sharing arrangement for livers. Other large increases occurred in Region viii (Iowa, Missouri, Nebraska, Kansas, Wyoming, and Colorado)-xi.3 percent-and in Region 4 (Oklahoma and Texas)-9.1 percent (DHHS, 1999a; UNOS, 1999). Each of these regions engages in broader sharing beyond the local OPO service area.

TABLE 4-1. Number of Cadaveric Donors by Donor Age from 1994 through October 31, 1998.

Table 4-1

Number of Cadaveric Donors by Donor Age from 1994 through October 31, 1998.

TABLE 4-2. Number of Cadaveric Donors by Donor Race from 1994 through October 31, 1998.

Tabular array 4-two

Number of Cadaveric Donors by Donor Race from 1994 through October 31, 1998.

Demand for Educational Interventions

While the consent rate for potential organ donors from African American families continues to be less than that of white families (Eckhoff et al., 1998), there are information demonstrating that a concerted attempt to increase donation tin can be, and has been, quite successful. Between 1988 and 1996, organ donation amongst African Americans increased from 17 to 23 percent (Ehrle et al., 1999; UNOS, 1998), largely because of innovative programs that target the needs of minority populations with interventions such as race-specific requesters (Ehrle et al., 1999; First, 1997; Gentry et al., 1997; Kappel et al., 1993). Inside this same time frame, the OPO for the University of Alabama at Birmingham was able to increase its organ donation rates from vi.i percent to 21.nine per centum (Eckhoff et al., 1998). This increment in donation was accomplished by improving the awareness past transplant coordinators about cultural differences and by hiring minorities for outreach and coordinator positions. Nevertheless, nonetheless more tin exist done on a national level to improve these statistics.

In testimony to the IOM committee on April 16, 1999, it was stated that donor shortage is, in part, a result of perceived inequities in organ allocation (Callender, 1999). The shortage exists in all communities, but especially in the African American. To address this trouble, information technology was suggested that there must exist a focus on the impediments to donation, which include:

  • the perception of inequitable organ resource allotment;

  • suboptimal use of the community every bit a change agent for organ tissue donation and transplantation;

  • lack of interest of the community at all levels of trouble resolution, research, and resource resource allotment;

  • lack of transplantation awareness;

  • religious myths and misperceptions;

  • distrust of the health intendance organization and wellness intendance professionals;

  • fears that signing donor cards will lead to premature annunciation of death;

  • inadequate use of recipients, donors, and transplant candidates as community messengers; and

  • inadequate allocation of funds for donation education efforts.

The example of lower rates of organ donation in the African American community helps illustrate that variability in organ donation rates is due to many causes. At that place is no evidence bachelor to suggest that local resource allotment policies lone would significantly alter donation rates. Information technology is more than likely that enhanced educational interventions at the public and professional person levels would significantly change participation in the system, along with public policies that encourage donation. Some of these (i.due east., ''required asking," "routine verification," and other approaches to improve donation) are described in the following section.

Required Request and Routine Notification

By the late 1980s, almost states and the Commune of Columbia had enacted "required request" legislation in an endeavor to increase hospital referral rates. This legislation requires hospitals to consult with the potential donor's next of kin and specifically request organ donation should the patient be at, or near, expiry (American Hospital Association et al., 1988; Cate and Laudicina, 1991). In some instances, hospitals may be required to refrain from asking family members to consent if: the patient is medically unsuitable, there are opposite indications from the family, there are conflicting religious behavior from either the family or potential donor, the family is too emotionally traumatized to be consulted for donation, or prior objections to organ donation take been made by the patient (American Infirmary Clan et al., 1988; Ehrle et al., 1999). Withal, several studies past the Partnership for Organ Donation and the Harvard Schoolhouse of Public Wellness have shown that more than i-quarter of the time, eligible families are not even offered the option to donate (Gortmaker et al., 1996).

The 1986 Autobus Reconciliation Act (42 United statesC. 1320b-8) required hospitals to have processes in place to ensure that all families of potential donors are identified and referred to the OPO and that all families are given the opportunity to consent or decline to donate the organs of their relative. The police authorizes Medicare and Medicaid funds to exist withheld from hospitals that did not comply, but this authority has never been exercised.

"Required request" legislation, on both the country and national levels, did not appear to contribute to a substantial increment in donation. In standing the effort to increase donation, several states, led by Pennsylvania, take passed "routine notification" legislation to address the trouble of failure to determine which patients are potential donors (Ehrle et al., 1999). This legislation requires that all deaths or deaths that are imminent within a hospital be referred to the Medicare certified OPO. In other areas of the Us, hospitals and OPOs have voluntarily adopted a policy of routine notification (Ehrle et al., 1999).

Reports from an OPO in Pennsylvania indicated substantial increases in organ every bit well every bit tissue and centre donations in the 3 years since implementation of routine notification (Ehrle et al., 1999). The Delaware Valley Transplant Program,* which serves Delaware, southern New Jersey, and the eastern half of Pennsylvania, reported a 49 percent increase in donations since 1994 when Pennsylvania passed its comprehensive law governing organ donation (Nathan, 1998).

An OPO in Texas, a state that does not have routine notification laws, worked with its hospitals to voluntarily implement routine notification and experienced a 12 percent increase in organ donation in the 2 years after implementation, an increase that was 352 percent greater than the national growth in organ donation (Ehrle et al., 1999; Shafer et al., 1998).

At the federal level, in June 1998 the Health Care Financing Assistants (HCFA) issued an amendment to its Hospital Conditions of Participation for Medicare and Medicaid, which requires all acute care hospitals to notify their local OPO of all infirmary deaths (Ehrle et al., 1999). The OPO could and then asking donation from families of potential donors. If followed consistently, information technology appears that this policy of routine notification would substantially increase the number of potential organ donors referred to OPOs (Ehrle et al., 1999).

Boosted Approaches to Improve Donation

Health professionals and patient groups concerned with the depression rate of organ donation have suggested boosted approaches to increment donation. These have included development of standardized hospital practices; improvement of the consent process; better training of medical staff; refocusing public didactics to promote family discussion; and clearer guidance about encephalon expiry for families and health professionals (Dejong et al., 1995; Franz et al., 1997; Gortmaker et al., 1996; McNamara and Beasley, 1997). Other efforts to promote donation include public awareness campaigns, efforts by local OPOs nationwide to address donation at the customs level, and projects conducted past national groups to educate health professionals and the public near donation and transplantation. In addition, donor criteria have been expanded to allow older and less healthy patients to donate organs.

A controversial method to encourage organ donation has been recently proposed in Pennsylvania. If adopted, this plan will help defray the organ donor's family unit funeral expenses past providing $300 from a special state fund directly to the funeral home that handles the donor'south burial arrangements (Nathan, 1999). Advocates of this law contend that this plan is non established as a payment for organs considering the law requires that any payment be made directly to the funeral abode and not to the donor's family, next of kin, or estate (La Hay, 1999; Pennsylvania Act 1994-102, 1994). Rather, the intent of this airplane pilot programme is to increment awareness and participation in organ donation.

Assessing OPO Performance

A major impediment to greater accountability and improved performance on the part of OPOs is the current lack of a reliable and valid method for assessing donor potential and OPO operation (Christiansen et al., 1998). HCFA currently evaluates OPO operation (on a per-million population basis) for the following performance measures: (1) organ donors; (two) kidneys recovered; (3) kidneys transplanted; (four) extrarenal organs recovered (heart, liver, pancreas, lungs); and (v) extrarenal organs transplanted. Each OPO must see numerical goals in at least four of the 5 categories to exist recertified past HCFA equally the OPO for a detail area and to receive Medicare and Medicaid payment. Without HCFA certification, an OPO cannot continue to operate.

In 1997 the U.S. General Accounting Office (GAO) determined that the current performance measures do not accurately assess OPO performance because they are based on total population, not the number of potential donors (GAO, 1997). OPO service areas vary widely in the distribution of deaths by crusade, underlying health conditions (e.yard., HIV, liver illness), historic period, and race, which in turn touch the number of potential donors. The GAO identified 4 alternative performance measures that would better guess the number of potential organ donors: organ procurement and transplantation compared with the number of deaths, deaths adjusted for cause of death and age, medical records reviews, and modeling (GAO, 1997). HCFA is currently evaluating the feasibility and usefulness of implementing revised measures.

Although efforts are under style to employ a denominator that more accurately identifies potential donors, other operation criteria are needed for OPOs, (e.g., measures of the quality, function, and biological outcomes of the transplanted organs), rather than depending solely on donors per population or donors per hospital death.

Conclusions

Many variables affect organ donation rates, including cultural attitudes, the historic period and race of the donor, the progression of illness in the donor, the attitudes of the donor's family unit, the mode in which individuals are approached, and the policies and practices of hospital staff and organ procurement organizations. The nigh important manner to increase donation is to ensure that all eligible families are approached about donation.

Based on a review of the literature and survey data, testimony received, and preliminary data on increased donation rates in UNOS regions that engage in broader sharing beyond the local OPO service areas, the commission concludes that organ donation rates are not probable to exist afflicted adversely past broader sharing (i.e., allocation areas that exceed the geographic boundaries of the OPO). To address the continuing concerns near donation, the committee believes that concerted efforts amongst health professionals involved in organ procurement should proceed-including development of standardized hospital practices; improvement of the consent process; better training of medical staff; refocusing public educational activity to promote family discussion; and clearer guidance about brain expiry for families and health professionals. These activities and relationships of the OPO are necessary components of effective organ donation activities that should not be afflicted by broader allocation policies.

*

The Delaware Valley Transplant Programme recently inverse its name to Gift of Life Donor Program (Gift of Life Donor Programme, 1999).

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Source: https://www.ncbi.nlm.nih.gov/books/NBK224655/