The Business of Saving Lives. Organ Donation at OneLegacy in Southern California




© Springer International Publishing Switzerland 2016
Ralf J. Jox, Galia Assadi and Georg Marckmann (eds.)Organ Transplantation in Times of Donor ShortageInternational Library of Ethics, Law, and the New Medicine5910.1007/978-3-319-16441-0_27


27. The Business of Saving Lives. Organ Donation at OneLegacy in Southern California



Thomas Mone 


(1)
OneLegacy, Los Angeles, CA, USA

 



 

Thomas Mone





Thomas Mone

is the Chief Executive Officer of OneLegacy, the Organ and Tissue Recovery organization serving Southern California that recovers 1400 + organs and 100,000 tissues for transplant each year while serving the most demographically and culturally diverse population in the U.S. and perhaps the world. Prior to working in transplantation, Mr. Mone directed hospitals for 20 years and he started his career as a health finance analyst in the US Department of Health and Human Services. His research and publications have been focused on increasing organ donation rates across multicultural communities and improving the utilization and safety of organ transplantation via advances in donor testing.

 



27.1 Introduction


The LMU Center for Advanced Studies in Munich has chosen to investigate the challenge of the shortage of organ donors for life-saving transplants in Germany and world-wide; a topic that is ideal for a multi-disciplinary program since it requires an understanding of the roles of biology, medicine, psychology, sociology, communication , ethics, economics and organizational management. Transplantation is also a very timely topic due to immediate challenges taking place in the German transplant community that have resulted in decreases in donation and subsequent increase in waiting time and deaths on German waitlists. This review of the challenges, successes, principles, and interventions employed to dramatically improve donation in Southern California will ideally provide models of organization and operation that transcend political and cultural variances and can help improve donation and transplantation in Germany and elsewhere.

OneLegacy is the Organ Procurement Organization (OPO) whose staff of 300 personnel serves Southern California and its population of 19.5 million people, 215 Hospitals, 11 Transplant Centers, and seven Medical Examiner offices. As such, OneLegacy is the largest of the 58 OPOs in the US, which serve populations that range from 1 to 19.5 million. All of these OPOs grew out of recovery programs that began 50 years ago as components of the fledgling transplant programs (Mone 2006; Shafer 2006). The OPO regions reflect to this day the geo-politics of their start-up centers and in large part, organs recovered are allocated to the OPOs’ local communities first and shared more broadly when no recipient is nearby. And while perfect-match kidneys may travel across the country and the sickest liver recipient in a broader region may receive the next organ, local-first remains the basis of organ sharing (Graham 2006). A problematic consequence of this historic allocation system is that potential organ donors are not uniformly distributed across the US, with the some regions having 40–50 % higher potential and concordant 40–50 % shorter waiting times for transplant (Sheehy et al. 2012).

This geo-political/medical reality creates a need for extraordinary performance in more challenged areas with lower donor potential and has resulted in concerted efforts at OPOs like OneLegacy. The results of this effort can be seen in the graphs of Donor Authorization Rate, Donors, Transplants, and Donors per Million Population (normalized for varying international death rates) (Mone 2013). All four graphs demonstrate significant growth over the last decade and given OneLegacy’s very high proportion of foreign-born and first and second-generation immigrants (approximately 50 %) (Reibel 2013; US Census QuickFacts 2010; US Organ Procurement and Transplant Network 2013) and the disparity of potential donation rates and actual donation rates across Europe suggest that the interventions employed at OneLegacy may have value in Germany and other regions of the world.


27.2 Principles of Organ Donation Success


Studies of successful donation programs (Mone 2002, 2012; Matesanz 2011b) have identified eight management and organizational principles that are followed by successful programs:





  • Ethics-based Regulation & Oversight for public trust


  • Separation of donation from transplant


  • Communication of the value of donation to the public


  • Allocation rules to ensure fairness


  • Professionalization/Role Specialization for expertise


  • Collaboration of OPOs, Hospitals and Transplant Ctrs


  • Transparency with the public


  • Innovation in the science of donation


Context

Applying these principles requires an understanding of the healthcare system of each country. In the US, where healthcare is largely supplied and paid for by private organizations, the OPOs act as a vendor or supplier to transplant programs (Mone 2002). However in Spain where healthcare is routinely provided by governmentally funded institutions, OPOs are often a budgeted department or service of a hospital (Matesanz 2011b; Manyalich 2011). These and other culturally-determined variations will affect how these eight principles are applied, but they do not change the fact that all eight must be present to improve organ donation.


Ethics-based Regulation and Oversight

In the US, the ethical underpinnings of donation and transplant are incorporated in the Uniform Anatomical Gift Act (CAH & SC 2012) which recognizes the autonomy of the donor to make the decision to donate, independent of family or institutions. The law also recognizes the family or legal agent’s right to decide when the individual has not. The UAGA clearly dismisses the notion of state-authorized recovery of organs. Presumed Consent, which is often discussed as a solution to the organ shortage but in fact has never been shown to be applied in practice and has never resulted in increased donation (Boyarsky et al. 2011; Matesanz 2011b; Rithalia et al. 2009).


Separation from Transplantation

This may be one of the more controversial of the eight Principles, as many countries continue to operate their recovery programs from within transplant centers. However, the highest performing OPOs in the US, Spain and elsewhere separate these functions first and foremost to ensure adequate and consistent funding of donation, to remove incentives for the misallocation of organs to the center’s lower-ranked recipients, and to motivate the maximum utilization of organs across a broader sharing region.


Communication

Organ donation education has ranged from being weak and understated and fearful of associating with the specter of death to being factual and respectful but still private quiet, to an intentional effort to inspire people to donate by celebrating the life that is saved through transplant and the legacy of the life that was cut short but fulfilled through donation. OneLegacy and successful OPOs throughout the world have opted to engage in public and proactive donation education programs. This more public approach is grounded in the recognition that organ donation is not about death; rather organ donation is about the choices people make once death has occurred (Stadtler 2005; Cameron et al. 2013). This is a fundamental principle and practice of successful donation programs and while it is always respectful of the deceased donor, it accepts that the death has happened, is an independent event, that families ultimately must and do look forward, and recognizes the opportunity to help them do so by choosing to create a legacy of life through organ donation.


Allocation

Given the reality in which the availability of organs is such that there will always be scarcity (even if everyone who could donate upon death did so, which is only 0.5 % of all deaths (Sheehy et al. 2012)), it is essential to ensure that all of those who can donate do so. To accomplish this it is essential that all who may be asked to donate believe that if they need a transplant they will have an equal opportunity to receive one. Thus the allocation of these scarce organs must be perceived as fair. Of course fair has a number of possible interpretations, so organ allocation systems are in a constant state of evolution. In the US this evolution has migrated from first-come-first served, regardless of economic factors to a more refined balance with identifying those with the most immediate need and greatest likelihood to successfully survive with a transplant (Graham 2006; Yeh 2011).


Professionalization/Specialization

While organ donation practice began as a task of transplant center nurses, with the separation of duties to OPOs the unique needs of donor management and organ resuscitation medicine took precedence in the hiring and training of OPO personnel. As OPOs have grown, the duties and processes of organ donation have evolved to create at least seven specific skill set/specialty needs (Mone 2002). Thus, additional roles, training , and formal and informal certification of these roles and personnel have developed. Applying such specialization remains a challenge in smaller OPOs, but where the workload affords it, specialization has resulted in higher donation performance and lower costs; especially in a healthcare world in which critical care nurses and MDs are in short supply.


Collaboration

While Separation and Specialization bring clear benefits to donation, they create the potential for isolation and can inhibit critical cross-communication; commonly known as a “Silo Effect” (Hotaran 2009) . Thus, OPOs, Donor Hospitals, Transplant Centers, and the staff within each institution must establish formal and informal means of and reasons for regular communication . This starts with identifying common goals, sharing consequential events and problems in the search of systemic solutions, and speaking with one voice of the benefits, safety , and opportunity of donation. And, as technology advances, sharing real-time information on donors, donor management goals, and donor condition, and allocation status is essential to ensure short and long-term collaboration on the common end goal of saving lives through donation and transplant (Staes et al. 2005).


Transparency

All efforts at removing the myths and misconceptions associated with donation which have been rather successful in western countries can easily become undone if rare problematic events occur and worse if they are ignored or covered up. Straightforward medical errors like inadequate brain death testing that allowed a child to be prepared for organ donation while conscious but temporarily paralyzed could have decimated donation if not corrected at the time, procedurally for the future, and honestly communicated with the public. (Associated Press 2008) However, the facts and rarity of the case were openly discussed in the media, and it was noted that if his family had not opted for donation he might have been extubated and never have recovered. Thus, a potentially horrendous mistake was shown to be an inadvertent blessing and the public discussion furthered the cause of donation rather than harmed it. Public relations specialists have long-advocated absolute transparency in such circumstance to limit the opportunity for speculation that is caused by a vacuum of information. Because donation begins upon death, the primal and visceral fears of death that we are born with rapidly rise, but can easily be quelled with clear, direct information and transparency in response to inquiry, such as when a liver mis-allocation bypassed some 50 patients in Southern California, but donation actually rose due to full public disclosure (Ornstein 2005).

Of course, a commitment to transparency can be tested when errors of omission or commission occur. It is for this reason that successful OPOs and donation systems support and include robust systems of organizational and process audit. In the US OPOs it is common to have two or three departments of government (CMS, HRSA, FDA), the federally contracted UNOS and transplant centers, and multiple tissue processors, conduct audits of OPO data and practices. Additionally, US OPOs participate in independent accreditation by their peers (AOPO 2012); all in the effort to ensure that public trust is maintained by making sure the process and results are monitored and tracked and communicated.


Innovation

This principle may end up being a catch-all for the many developments yet to come in successful organ donation, but for now it is focused on the aggressive use of latest generation donor-testing, electronic donor records, to capture, transmit and analyze donor information, the development of new organ resuscitative pumping devices, allocation algorithms to maximize the matches and life-years gained form transplantation. And of course donation and transplant innovation must include means to enhance, clone, print, genetically modify and mechanically replace organs that will one day put the donation community out of business by enabling the transplant of all who are waiting. Innovations like NAT testing have added new levels of safety (Nowicki et al. 2006), Electronic Donor Records enable Intensivist and Surgeon consults and informed decision making based on the complete medical record rather than a telephonic summary, and lung pumps are resuscitating previously untransplantable lungs and enabling them to remain viable for 5 times longer than only 3 years ago (Cypel 2011)


27.3 Donation Process


With these fundamental principles in place, OneLegacy and successful OPOs employ a systematic process of delineating the tasks, recruiting and training specialists and developing programs, policies and procedures to accomplish donation:





  • Donation Development to Educate and Inspire the General and Healthcare Professional Communities (35 % of OneLegacy’s 170 Organ Recovery staff; marketing and communication skilled individuals)


  • Potential Donor Referralresponse and assessment (10 %; Call Center personnel)


  • Donor Evaluation for Clinical Suitability (10 %; primarily clinical first responders, like paramedics)


  • Family Support and Authorization for Donation (12 %; multi-lingual, grief-trained counselors)


  • Donor Management, Testing, Organ Resuscitation (24 %; Critical Care RNs with Intensivist MD consultant)


  • Organ Placement and Recovery (6 %; Surgical Technicians and specially trained organ placement personnel)


  • Aftercare (3 %; social workers and grief specialists)


Donation Development

At OneLegacy, more than other OPOs, it is essential to communicate this message in languages, media and venues that are accessible to the 70 % of the population that is non-white/non-English speaking/immigrant (US Census QuickFacts 2010). In creating these materials the task is more complex than simply transplanting language, as individuals from other cultures inevitably arrive with spiritual, ancestral, death and healthcare beliefs and understanding that are very different than multi-generation white English-speaking American. Thus, OneLegacy employs communication strategies that cross cultural boundaries such as the annual Rose Parade that is seen by 84 million viewers (ToR 2013). This typr of event, whose audience assembles and watches for purely celebratory reasons having nothing to do with organ donation, are presented with donors and recipients from every cultural and ethnic group of the region and religious and community leaders who proclaim their religions and communities’ support for organ donation; which is often not known by their own community members.

OneLegacy also seeks to utilize public statements from political, cultural, and institutional leaders to demonstrate that donation is both the right and natural thing to do and that it is a safe thing to do (to overcome unfounded fears that “doctors may not try to save my life because they want my organs”). Among the leaders who have been very public in their support have been Steve Jobs, following his liver transplant, Governor and actor Arnold Schwarzenegger, hospital leaders and television stars like Alex O’Loughlin. And to amplify this effort, OneLegacy created Donate Life Hollywood; an initiative to help television and movie writers tell accurate and still dramatic stories of donation and transplant and to celebrate and promote in the media those producers and shows that have helped remove fears and promote donation; much like Pedro Almodovar has done in Spain (Stenner and Moreno 2013).

Professional education at OneLegacy is focused on the continuing responsibility to educate new hospital staff RNs, MDs and support staff on the facts of donation, the opportunity to make donation a part of end-of-life care for families, and to celebrate the decision to donate through such acts as flying a Donate Life flag at the hospital every time there is a donor. These actions collaborate to share a message that donation is not a topic to avoid; rather it is an event to celebrate and thereby honor the donor, the donor family and the life of the recipients who have been saved.

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Aug 1, 2017 | Posted by in General Surgery | Comments Off on The Business of Saving Lives. Organ Donation at OneLegacy in Southern California

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