The purpose of this course is to outline the roles and responsibilities of the nurse caring for patients and families considering and then undergoing organ donation to serve as an educator and liaison during this complicated and emotionally difficult period. This course also satisfies the state of New Jersey’s requirement for all professional nurses to complete one continuing education course that covers organ and tissue donation and recovery designed to address clinical aspects of the donation and recovery process.
At the completion of this activity, the learner should be prepared to:
- define the relevant terms and discuss the national and worldwide statistics regarding organ donation and its inherent value to society
- review eligibility criteria for the donation of tissue and organs
- recognize which organs and tissues are typically donated
- define the process of living organ donation, donation after circulatory death (DCD), and donation after brain death (DBD)
- illustrate how to engage with a donor’s family during interdisciplinary discussions regarding the donation of tissue and organs after a loved one has been deemed eligible
- explore the evidence-based recommendations regarding the assessment and care of a potential organ donor immediately prior to organ procurement
- discriminate between common myths and facts as well as barriers and facilitators of organ and tissue donation in order to better understand the process professionally as well as educate patients and their families
- identify some ethical concerns and research questions that remain to be answered in the field of transplant medicine
Definitions and Statistics
The dead-donor rule refers to a longstanding ethical principle forbidding organ removal if it will result in the death of the donor (Mezrich & Scalea, 2015; Rosenbaum, 2020).
The cold ischemia time refers to the time between organ retrieval and implant, during which period the organ is maintained at cold temperatures to preserve tissue integrity (Health Resources and Services Administration [HRSA], 2020a; Tullius & Rabb, 2018).
Donation after brain death (DBD) refers to the use of the American Association of Neurology (AAN) definition of brain death (irreversible coma due to a known cause, brainstem areflexia, and apnea) prior to consideration of eligibility for organ and tissue recovery (Lewis et al., 2020; Starr et al., 2020).
Donation after cardiac death (DCD) refers to the irreversible cessation of circulatory and respiratory functions due to cardiac arrest or severe, advanced heart disease prior to consideration of eligibility for organ and tissue recovery (Lewis et al., 2020; [email protected], 2018; Starr et al., 2020).
An early transplant refers to a transplant in a recipient shortly after organ failure (Lewis et al., 2020).
An imminent death donation is a process whereby patients with a terminal condition who are in the process of dying consent to having their organs donated prior to their death (Rosenbaum, 2020).
A preemptive transplant refers to a transplant in a recipient with chronic organ disease (e.g., chronic kidney disease [CKD]) but who is not yet in end-stage organ failure (e.g., requiring dialysis; Lewis et al., 2020).
A specified direct donation involves the donation of an organ to a specified recipient by a living donor within their family (Lewis et al., 2020).
A specified indirect donation involves the donation of an organ to a specified recipient by an unrelated living donor through an exchange program (Lewis et al., 2020).
An unspecified donation involves the anonymous living donation of an organ between a donor and recipient that are unknown (Lewis et al., 2020). Transplant centers and organ procurement organizations (OPOs) are obligated by HIPAA regulations to protect the identity of both parties. The only circumstance under which contact information for either party may be exchanged is if both parties agree to an exchange of contact information. More often, grateful recipients interested in thanking a donor or a donor’s family will typically correspond with a note that is delivered via an intermediary, such as the OPO or the transplant center itself (HRSA, 2020a).
The warm ischemia time is the time spent without blood flow while the organ is still inside the patient. In DCD, this time begins with the withdrawal of life support and extends until organ procurement/preservation in the operating room. This includes two consistent or predictable periods (the 5-minute waiting period and the time spent prepping the patient for surgical organ retrieval) as well as the unknown factor of how long after removal of artificial life support before cardiovascular death occurs. In DBD, this period is significantly shorter, as DBD patients typically remain on circulatory/ventilatory support up until the time of organ retrieval. In both circumstances, warm ischemia time is also accrued as the organ is being rewarmed and prepared for implant following organ transport to the recipient’s location (Hong et al., 2011; Mezrich & Scalea 2015; Serri & Marsolais, 2017).
When the conversation regarding organ donation is had with a potential donor family, this conversation must be separated in both time and space from the conversation regarding their loved one’s prognosis. For example, if life support will be withdrawn or if brain death has been confirmed, these conversations should happen separately from (and before) any conversation regarding organ donation. This concept is called decoupling. When decoupling does not occur, the consent rate for donation decreases by roughly one-third. Families must be allowed time to process and accept their loved one’s prognosis before being asked to discuss the next steps. For potential DBD donors, this means the family should fully understand the concept of neurological death. For potential DCD donors, this means that the family should have already discussed and accepted their loved one’s prognosis and made the difficult decision to withdraw support (Serri & Marsolais, 2017; Shemie et al., 2017). Studies indicate that the perceived skill and personal relationship of the healthcare provider with the family are important factors cited by families during the discussion/decision to donate organs of a deceased loved one. Trust must be established first. Organ donation conversations should be held in private, and the healthcare provider(s) present should be very knowledgeable regarding the donation process to quickly and confidently answer the family’s questions (Serri & Marsolais, 2017). An invitational forum in Canada regarding organ donation discussions with patient families determined that the medical team should be primarily focused during these conversations on being collaborative, compassionate, supportive, and informative regarding the process and inherent value of organ donation. These conversations are best had using a multidisciplinary team, and some recommend that a different group of providers should be present for the organ donation conversation than was present for prior conversations regarding prognosis and withdrawal of support. Information should be communicated in a clear, comprehensive, and comprehensible manner with a focus on sensitivity, compassion, caring, confidence, positivity, and family wellbeing. The medical team should outline the roles of various professionals, the step-by-step process of donation, and any impact on funeral arrangements (Shemie et al., 2017). For example, many families are relieved to learn that they are still able to proceed with an open casket funeral for their loved one following organ donation in almost all cases. The representative from the OPO will obtain the required informed consent from the patient’s legal next of kin following this conversation. They are also responsible for logistical details such as contacting UNOS, who manages the OPTN in the US, and arranging transport of the organs following procurement (HRSA, 2020a).
If the initial reaction from the family during the organ donation conversation is reluctance or hesitation, it is acceptable to sensitively explore and discuss the reasons underlying their feelings further. However, the medical team should avoid appearing apologetic, guarded, aggressive, or coercive when discussing organ donation with family members. If the prior discussion was had with an untrained staff member or led to a misunderstanding of the facts, then a second attempt may be made with a more experienced team and concrete action plan. A repeat attempt to discuss organ donation with a family may also be reasonable in situations where additional relevant clinical information is now available, the patient in question has since been confirmed as a registered organ donor, or advance directives with specific instructions regarding organ donation have since been located. Unconditional support should be provided to the patient’s family before, during, and after the donation process, regardless of whether or not they elect to provide consent (Shemie et al., 2017).
Assessment and Care of the Potential Organ Donor
OPOs follow more conservative criteria when assessing organs donated following cardiac death, which may reduce the number of viable organs for donation. Typically, this leads to the donation of just the kidneys; the donor’s lungs, liver, and pancreas are less commonly viable (healthy enough for transplantation; Tullius & Rabb, 2018). The average donation for a patient after DCD varies from 1.5-2.75 organs, versus 3-4 organs after DBD (Serri & Marsolais, 2017).
The management of a patient status-post brain death before organ donation can be complicated. Brain death typically leads to a systemic inflammatory response, a catecholaminergic discharge, and diabetes insipidus (DI) with hypovolemia due to the sudden decrease in antidiuretic hormone (ADH) production. The nurse must focus on maintaining the patient’s blood pressure to perfuse their organs and avoid hypotension, with a goal mean arterial pressure of at least 70 mm Hg. The patient’s urine output must also be monitored while maintaining euvolemia, with a goal of at least 0.5 cc/kg/hour of urine output. DI typically presents with large amounts of dilute urine output combined with dehydration (i.e., increased serum osmolality and hypotension). There are no specific recommendations regarding the use of vasopressors or inotropes to maintain perfusion; however, vasopressin (Vasostrict) is preferred for managing DI in these patients if it does develop. These measures will help protect the kidneys and ensure adequate perfusion of the patient’s other organs. To protect the lungs, the medical team should avoid hypervolemia and utilize lung-protective ventilation techniques and lung recruitment strategies as needed. Based on observational data only (currently no randomized controlled trial data), the use of insulin, corticosteroids, and thyroid hormones is commonly incorporated to correct hormonal imbalances. Various tests may be performed to assess the health and viability of the patient’s organs before procurement. If the donor is over the age of 40 or has multiple cardiac risk factors, an echocardiogram and/or cardiac angiography may be performed. A bronchoscopy may be indicated to assess the patient’s anatomy and airway clearance. Additional laboratory or imaging studies may be recommended to further assess the health and functioning of the liver, kidneys, and pancreas. Despite the numerous considerations required to optimize potential organ donors following brain death, the primary advantage is that these patients may remain on cardiovascular life support throughout the entire process. These patients are transported to the operating room to retrieve the organs without any significant period of warm ischemia (Serri & Marsolais, 2017; Tullius & Rabb, 2018).
Patients that may have the potential to donate organs following cardiac death are managed similar to the considerations mentioned above, with a primary focus on maintaining euvolemia, hemodynamic stability, and utilizing lung-protective ventilation techniques. As these patients may retain some brain function, they may not require DI or hormonal imbalance management (Serri & Marsolais, 2017). As previously stated, the health and viability of a donor’s organs following cardiac death are directly related to the length of time between the withdrawal of cardiovascular and ventilatory support, the declaration of cardiovascular death, and the surgical procurement of the organs, or the warm ischemia time (Mezrich & Scalea 2015; Serri & Marsolais, 2017). The health of the patient’s organs is optimized if there are less than 240 minutes (4 hours) between the initial withdrawal of life support and organ retrieval/preservation (Dopson & Long-Sutehall, 2019). Often, patients over the age of 65 will not be able to successfully donate healthy organs following cardiac death, while DBD donors may be significantly older (Tullius & Rabb, 2018).
Following procurement, tissue biopsies may be performed to assess the organ viability, especially regarding kidneys. Additionally, recently developed ex-vivo perfusion techniques have improved the health and viability of transplanted organs by reducing the risk of tissue damage during the period of cold ischemia (Thomas et al., 2019). Machine perfusion devices are being researched and developed, such as lung perfusion devices, to continue ex vivo optimization, assess, and potentially increase the use of marginal quality organ donors. These perfusion devices are being developed for liver, kidney, and heart donations as well. The use of extracorporeal support prior to donation and its potential impact on tissue health is also being explored (Serri & Marsolais, 2017). These technologies may be especially crucial if attempting to successfully procure the organs of older donors, which typically have more strict limitations regarding the cold ischemia time between retrieval and placement. Early research indicates that normothermic perfusion may be the most effective for lung and liver tissue, while cold perfusion techniques appear to be beneficial for kidney assessment and transport. An obvious disadvantage of these technological advancements is their additional cost, which can be significant (Tullius & Rabb, 2018).
Barriers and Facilitators to Organ Donation
The barriers and facilitators to increasing the number of healthy organs transplanted are numerous, varied, and at times difficult to accurately identify and characterize. Experts in the field advocate for an increase in national public health campaigns educating the public about the importance and safety of living kidney donations. An unexpected yet potential facilitator of living organ donation is social media and technology. MatchingDonors.com is an internet site first developed in 2004 where those in need of an organ and those willing to donate a kidney or a portion of their liver are connected electronically. As previously stated, additional financial support for living donors would also serve as a facilitator, funding hardships such as lost wages and childcare for living donors. Spain, which is regarded as the world leader in organ transplantation, strives for early identification of potential donors, has developed broad eligibility criteria regarding viable organs for transplantation, and instituted nationwide training for healthcare professionals regarding family communication surrounding organ donation (Lewis et al., 2020; Thomas et al., 2019). Spain also utilizes nurses as transplantation coordinators in certain specialized transplant centers across the country. In a recent qualitative study, these nurse coordinators describe their role as distinctly different from traditional medical surgical bedside nursing. This confers a sense of pride that they are functioning professionally as a component of the organ donation system. The role requires additional specialized training, excellent communications skills, and the ability to manage a multidisciplinary team and navigate stressful situations or crises. The study participants agreed that this is not a role for a novice nurse and identified that the position often involves a heightened level of emotional stress and a poor work/life balance due to the unpredictable and extended work hours required (Fernández-Alonso et al., 2020).
In prior studies, nurses have cited concerns regarding the donation of organs following cardiac death. Respondents noted that they felt the mandatory 5-minute observation period for asystole was insufficient (14%), that the patient would suffer or experience pain (11%), or that there would be legal repercussions (8%). A recent qualitative study of pediatric ICU nurses in the UK identified the following major barriers to discussing the option of organ donation with patients’ families: a lack of knowledge and resources regarding the organ donation process, assumptions about the parent/guardian’s views regarding organ donation, and a general reluctance to engage in sensitive conversations with patients’ families. Less commonly reported barriers included moral or religious objection, organ donation not being in the best interest of the patient, undue burden on the medical staff, discomfort discussing a “taboo topic,” and the fear of being perceived as insensitive or inappropriate by the family. The positive personal and professional attitude towards organ donation and the quality of the nurse/family/patient relationship were both facilitators of discussing organ donation with families that were consistent throughout the study. The nurses participating in the study specified an increased level of comfort and willingness to approach families regarding the possibility of donation if they were given the following support:
- written information regarding organ donation to review and/or distribute
- simulation sessions to practice having sensitive, challenging, and uncomfortable conversations
- annual updates from the institution’s transplant coordinator regarding any changes in the donation process/policy, resources for families, and typical/commonly asked questions, and how best to respond (Dopson & Long-Sutehall, 2019).
Despite this clear indication that additional education and information would increase healthcare providers’ comfort level when discussing organ donation with patient families, a 2016 study in Germany found that 96% of healthcare professionals (both nurses and doctors) felt they were adequately informed regarding the signs of brain death. Further, 92% reported that they felt sufficiently informed regarding the legal and regulatory aspects of organ donation and transplantation (Hvidt et al., 2016). Organ donation programs should strive to foster healthy, cooperative, and mutually beneficial partnerships with their regional OPO. Organ donation discussions that are led by formally trained and experienced facilitators are more successful. The recent invitational forum in Canada identified the following qualities and characteristics that are essential for leaders of effective organ donation discussions:
- a good communicator, listener, and facilitator with high emotional and cultural intelligence;
- open, honest, collaborative, and patient;
- self-aware, non-judgmental;
- comfortable in dealing with families in crisis;
- trained and experienced in dealing with conflict;
- passionate and knowledgeable about organ donation;
- confident in their ability to be successful;
- able to work well with various personalities (Shemie et al., 2017, p. 6).
To assess success, medical centers and donation coordinators should consider using the rate of family consent as an objective measure of success. Family surveys are an equally insightful method of obtaining more subjective and open-ended feedback regarding the effectiveness of organ donation discussions within a facility or institution (Shemie et al., 2017).
Ethical Questions that Remain
Transplant medicine inherently contains several pertinent ethical considerations, such as:
- Is death being hastened for the sake of donated organs?
- Is the donor or family well-informed?
- Is the recipient well-informed?
- Are both the recipient (and donor, if a live donation) prepared with adequate care awaiting their discharge following the procedure?
- Are their ulterior motives underlying the donation ([email protected], 2018)?
The dead-donor rule has been in effect since the beginning of transplant medicine. Imminent death donation, or live donation prior to planned withdrawal (LD-PPW), continues to provoke ethical discussions amongst organ transplant experts. These patients are anesthetized after being given the opportunity to bid farewell to their family members, and their organs are removed in an operating room under general anesthesia, making the official cause of death organ donation. While performed in other countries and generally considered to produce the healthiest and highest quality organs for transplantation, this process has not been sanctioned by the OPTN (Mezrich & Scalea, 2015; OPTN, 2016). An ethics committee review in 2016 cited ethical concerns; specifically, patients with a severe neurological injury who would be unable to provide informed consent of their own accord were of concern to the committee members. The stress of this ethical dilemma on the surrogate decision-maker was felt to be unreasonable by the committee. One member of the committee described this as a political, not an ethical, problem. The committee cited “potential risks that are too great at this time based on the responses and substantial concern from the nine other committees, lack of community support, and substantial challenges.” There exists no data with which to determine if LD-PPW would lead to an effective increase or decrease in the number of organs available for transplantation. Currently, any surgical program that proceeds with this method of donation in the US could be held legally liable for accelerating the death of a patient, even with a signed consent form. In Canada, where physicians have recently been granted legal immunity to facilitate a comfortable and somewhat hastened death by terminally ill patients, transplant teams continue to abide by the “5-minute no touch” rule prior to initiating the organ and tissue recovery process (OPTN, 2016; Rosenbaum, 2020).
It seems that public opinion in the US may be less divided than those in medicine regarding these ethical questions. In a 2015 survey including more than 1,000 Americans, 85% expressed intention to donate their organs following death, 61% signed an organ donor card, and 71% agreed that a patient in an irreversible coma (a vignette describing a patient who suffers a severe neurological injury leading to a complete lack of cortical activity, reliant on life support) should be allowed to donate their organs with consent, even if it meant causing their death to do so. Respondents also agreed (67%) that they would want to donate their organs in this scenario. However, opinions collected during this survey were somewhat complex. Most (69%) of respondents indicated that it was somewhat or very important for a potential donor to be “dead” prior to organ donation. When asked to define the term death, the two most common responses chosen were “dead means dead” and “scientifically dead- the body does not function as a whole, biologically” (Nair-Collins et al., 2015).
Unfortunately, the ethical concerns regarding the lack of equity in access to medical care amongst communities of color extend into the transplant medicine world as well. In 2019, more than half (67,000) of the patients on the organ donation waiting list were people of color (Lewis et al., 2020). Individuals of color, including African Americans, Asian Americans, Pacific Islanders, Native Americans/Alaskan Natives, and Hispanic Americans, have higher rates of certain chronic diseases that affect their vital organs; this increases the need for organ transplantation in these groups. Certain blood types are more common amongst individuals of color. Since organs must be matched based on the donor and the recipient’s blood type, it is vital that people of color register as organ donors. This community's need is higher than within the general population (Mayo Clinic Staff, 2019). Strategies suggested to address this inequity include increased efforts in communities of color to increase public awareness and public education regarding organ donation and improved primary care access to reduce the secondary need for organ donation. While an increase in organ allocation efficiency is still warranted, a transition from a location-based allocation system to a need-based system several years ago did improve the equity of organs being donated (Lewis et al., 2020).
Additional ethical considerations regarding the use and allocation of organs from older donors are also ongoing. To reduce the waste of donated and potentially viable organs that are considered of marginal quality, Eurotransplant has begun a pilot program whereby organs from donors over the age of 65 are transplanted into recipients within the same age group in lieu of being discarded. Five years after initiation, this model doubled the number of older kidneys transplanted and reduced the waiting time for a kidney transplant by more than 1 year. Similarly, they are exploring the potential benefit of dual kidney transplants, whereby one recipient receives both of the donor’s kidneys, which previously would have been deemed suboptimal and potentially discarded. The strict use of regulatory benchmarks by national agencies such as UNOS may serve as a deterrent to such experimental considerations in the US out of concern regarding regulatory consequences if the outcomes are inferior (Tullius & Rabb, 2018). Certainly, the fear regarding the scrutiny, backlash, and public relations debacle that would result following the death of a donor that was involved in a living organ donation, and the resulting impact this could have on the entire transplant program, deters many programs from exploring alternative and innovative ways to screen, recruit, and optimize patients willing and interested in donating their organs (Mezrich & Scalea, 2015).
Future Research to Optimize Organ Donation and Reduce Transplant Need
Most research in the field of transplantation is focused on how to optimize the tissue health of donated organs prior to, during (see prior discussion regarding ex vivo perfusion techniques), or after the transplant process. Enhanced early identification of potential organ donors and the expansion of the currently existing organ donor criteria are strategies that should be evaluated to improve the organ shortage across the country. Public awareness and education are vital to obtaining consent, as research consistently indicates that donation consent rates are directly related to the public’s level of understanding (Lewis et al., 2020). The usefulness of mild hypothermia is being explored in managing potential organ donors immediately following brain death declaration. The potential role of immunosuppressants and antioxidants in donors prior to organ procurement is being studied. Ex vivo perfusion techniques allow more time for organ and tissue assessment before placement. Immediately following reperfusion, significant tissue injury occurs related to inflammation, apoptosis, epigenetic changes, and oxidative stress. Immune therapies targeted at reducing or limiting this damage are ongoing but are struggling to overcome the small number of patients enrolled in their clinical trials. Alternately, stem cells, anti-inflammatory T cells, and regenerative agents are being explored to enhance the repair process following this initial tissue damage. Pharmaceutical companies are exploring methods to enhance the effectiveness and reduce the adverse effects of immunosuppressive agents given to organ recipients (Tullius & Rabb, 2018).
In 2017, the National Academies of Sciences, Engineering, and Medicine (NASEM) convened an expert panel to address the national imbalance in the number of organs needed versus those available for transplant. This expert panel concluded that future research efforts should focus primarily on organ donor interventions (i.e., research focused on organs prior to transplantation). As the primary step in this process, the panel suggested developing, assessing, and then disseminating methods to discuss donor intervention research to prospect donors in order to optimize consent. They recommended that the Uniform Anatomical Gift Act be amended to clarify the patient’s wishes regarding donation for the sake of donor intervention research to identify and respect patients’ wishes. This registry should be accessible to regional OPOs and automatically encompass registration information from state motor vehicle departments. For recipients, the expert panel recommended clinical and research informed consent before accepting an organ that was subjected to research interventions. They recognize that this requirement may present a barrier to efficient research, especially if individual institutional review board (IRB) approval is required. They recommend a centralized and collaborative approach to donor intervention research oversight and monitoring with three affiliated but independent structures to offset this barrier. These three structures would include a single central IRB; an oversight committee to provide monitoring and prioritize, review, implement, and track research; and a data and safety monitoring board. Beyond donor intervention research, the expert panel also concluded that a single, unified, and secure donor registry would facilitate and simplify the process of obtaining legal consent for organ donation (Childress, 2017).
The UNOS information hotline, 888-TXINFO1 (888-894-6361), can be contacted for additional details regarding the process of organ donation, recovery, and transplantation (HRSA, 2020a).
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