Palliative and end of life care in solid organ transplantation

Palliative care is an interprofessional approach that focuses on quality of life of patients who are facing life‐threatening illness. Palliative care is consistently associated with improvements in advance care planning, patient and caregiver satisfaction, quality of life, symptom burden, and lower healthcare utilization. Most transplant patients have advanced chronic disease, significant symptom burden, and mortality awaiting transplant. Transplantation introduces new risks including perioperative death, organ rejection, infection, renal insufficiency, and malignancy. Numerous publications over the last decade identify that palliative care is well‐suited to support these patients and their caregivers, yet access to palliative care and research within this population are lacking. This review describes palliative care and summarizes existing research supporting palliative intervention in advanced organ failure and transplant populations. A proposed model to provide palliative care in parallel with disease‐directed therapy in a transplant program has the potential to improve symptom burden, quality of life, and healthcare utilization. Further studies are needed to elucidate specific benefits of palliative care for this population. In addition, there is a tremendous need for education, specifically for clinicians, patients, and families, to improve understanding of palliative care and its benefits for patients with advanced disease.     

Effects of lung transplantation on inpatient end of life care in cystic fibrosis

BACKGROUND: The impact of lung transplantation on end of life care in cystic fibrosis (CF) has not been widely investigated. METHODS: Information about end of life care was collected from records of all patients who died in our hospital from complications of CF between 1995 and 2005. Transplant and non-transplant patients were compared. RESULTS: Of 38 patients who died, 20 (53%) had received or were awaiting lung transplantation ("transplant" group), and 18 (47%) were not referred, declined transplant, or were removed from the waiting list ("non-transplant"). Transplant patients were more likely than non-transplant patients to die in the intensive care unit (17 (85%) versus 9 (50%); P=0.04). 16 (80%) transplant patients remained intubated at or shortly before death, versus 7 (39%) non-transplant patients (P=0.02). Do-not-resuscitate orders were written later for transplant patients; 12 (60%) on the day of death versus 5 (28%) in non-transplant patients (P=0.02). Transplant patients were less likely to participate in this decision. Alternatives to hospital death were rarely discussed. CONCLUSIONS: Receiving or awaiting lung transplantation affords more aggressive inpatient end of life care. Despite the chronic nature of CF and knowledge of a shortened life span, discussions about terminal care are often delayed until patients themselves are unable to participate.     

Osteoporosis is a prevalent finding in patients with solid organ failure awaiting transplantation – a population based study

Dolgos S, Hartmann A, Isaksen GA, Simonsen S, Bjørtuft Ø, Boberg KM, Bollerslev J. Osteoporosis is a prevalent finding in patients with solid organ failure awaiting transplantation – a population based study
Clin Transplant 2010 DOI: 10.1111/j.1399‐0012.2010.01231.x.
© 2010 John Wiley & Sons A/S. Abstract: Post‐transplant bone disease is common in solid organ recipients; however, there is limited information on their pre‐transplant bone status. We aimed to compare bone mineral density (BMD) in different categories of patients with end‐stage organ failure awaiting transplantation (Tx) in Norway. Overall 291 adult patients were enrolled, including 60, 84, 81 and 66 patients with end‐stage lung, liver, kidney and heart failure, respectively. Mean age was 51 ± 12 yr with no significant differences between the groups. We measured BMD in lumbar spine, femur, proximal one third and ultra‐distal radius by dual energy X‐ray absorptiometry. Differences in T‐ and Z‐scores between the groups were compared by ANOVA. Low bone mass was found in all four groups of patients. Both T‐ and Z‐scores differed (p < 0.05) at all measured sites between the groups. Patients with lung failure had the highest prevalence of osteoporosis (67%) and lowest Z‐scores, followed by patients with liver (31%), kidney (24%), and heart (23%) failure. Osteoporosis is prevalent in all groups of organ transplant candidates, and poor bone health is remarkably pronounced in patients with chronic lung disease. General practitioners and specialists who care for these patients before they are referred for transplantation should consider measures to prevent osteoporosis at an earlier stage.     

Case studies in transplant ethics

Clinicians and other health care professionals involved in the evaluation and management of organ transplant recipients and organ donors quite commonly encounter ethically complex scenarios during the course of their work. The response to such challenging situations may be influenced by personal experiences and beliefs, programmatic or institutional policy, existing legislation, published literature, and consultative analysis by experts in the field of biomedical ethics. As organ transplantation continues to evolve in its scope, complexity, and global reach, there is a growing need for transplant programs to carefully discuss and reach consensus on how to deal with specific ethical issues that may arise. In this article, we present the summaries of 3 clinically relevant case scenarios from the 2007 Mayo Clinic Course in Transplant Ethics, along with the results of audience responses and discussion facilitated by a volunteer panel of experts from North America.¹ The cases provide cogent examples of how open, consensus-driven discussion of specific ethically charged scenarios can be useful in guiding progressive clinical practices in organ transplantation.     

Ethical considerations related to organ transplantation and Islamic Law

With the increasing number of transplantable organs and tissues, as well as improvements in transplantation results, has come a severe shortage of organ donors. Organs for transplantation are usually obtained from living genetically related donors or from heart-beating cadavers. Unfortunately, these sources have so far been unable to keep up with demand. As a result, there is a large and steadily increasing number of potential recipients awaiting transplantation, some of who will die before an organ can be found. These trends have raised many ethical, moral, societal and in particular religious (Islamic Law) issues regarding supply, the methods of organ allocation, and use of living donors. Several ethical dilemmas regarding case selection, allocation within the law, medical problems, and economic sources have now to be confronted. Despite this, the legal framework regulating transplantation in Iran was recently enhanced in comparison to other Islamic countries.     

Findings and recommendations from the organ transplant caregiver initiative: Moving clinical care and research forward

Lay-caregivers are essential to the continuum of care in adult organ transplantation. However, we have a limited understanding of the experiences, exigencies, and outcomes associated with lay-caregiving for organ transplant patients. While much discussion and debate has focused on caregiver requirements in relation to transplant candidate selection, little focus has been given to understanding the needs of caregivers themselves. In response to this, the Organ Transplant Caregiver Initiative was created, and a meeting was held during October 6–7, 2019. Transplant healthcare professionals, researchers, and lay-caregivers discussed the experiences, educational needs, existing research, and research recommendations to improve the experience of lay-caregivers for adult organ transplant patients. In this report, we summarize the Organ Transplant Caregiver Initiative and meeting findings, providing a preliminary action plan to improve education, research, and advocacy for organ transplant caregivers.     

Combined orthotopic heart and liver transplantation: the need for exception status listing.

Through May 2004, 33 combined orthotopic heart-liver transplants (OHT/OLT) have been performed nationwide. No published data exist to date regarding outcomes of patients awaiting such transplants, although progression of two organ disease processes may contribute to premature death for waiting patients. Retrospective data were collected on patients listed for combined OHT/OLT from both an individual tertiary care transplant center and the national UNOS registry to delineate listing criteria and evaluate patient outcomes in both the pre- and post-MELD eras. All patients who survived to transplantation or died on the waiting list were included in the analysis. Results show that 29.6% of patients registered nationally and 42% of patients listed institutionally survived to transplantation. Survival to transplantation was associated with less severe liver disease, though patients with MELD scores ranging from 19 to 26 had significantly higher wait list mortality than expected when compared to single-organ liver transplants. Following combined orthotopic heart-liver transplantation, 80% and 70% of patients survive 1 and 3 years, respectively. In conclusion, combined OHT/OLT is a successful therapy, but current organ allocation policies may not ensure expeditious transplantation in critically ill patients with dual vital organ failure. Providing exception status listing to these patients would ensure more expeditious transplantation and potentially contribute to improved survival.     

Partnership for transplantation: a new initiative to increase deceased organ donation in poland

Despite the long-standing history of transplantation, the shortage of organs has remained its most restrictive factor. In 2010, the number of actual deceased organ donors in Poland was 13.5/million population (pmp). However, a huge difference in organ recovery rates is evident between various regions, eg, 32 pmp, in western Pomerania compared with 1-3 pmp in southern districts. A substantial number of patients who die while awaiting organ transplantations could be saved were effective programs able to overcome barriers in deceased organ donation. Such programs, eg, the European Donor Hospital Education Program, Donor Action, European Training Program on Organ Donation, United States Collaborative in Donation were introduced several years ago, but after transient improvements there has not been real progress. A new comprehensive program-Regional Partnership for Transplantation-was initiated a year ago in 4 districts of southern Poland by the Polish Union for Transplantation Medicine. The letter of intent to activate the donation program was signed by the local administration, the president of the local medical school, president of the Physician's Chamber, transplant centers, the Polish Union for Transplantation, and the Polish Transplant Coordinating Center. The plan of action included training of in-hospital coordinators, visits to all regional hospitals in company of a representative of the hospital founding body, examination of the real donation pool and the need for participation in a donation program training and education of the hospital staff in legal and organizational aspects of donation, brain death recognition, and various aspects of donor care. In addition, the program included communication skills workshops for intensive care unit physicians (with participation of 2 actors, an experienced anesthesiologist, and a psychologist), lectures for high school and university students and for hospital chaplains as well as alumni of higher seminaries. The preliminary results (after the first year) showed 40%-70% increases in activity of the local hospitals in the organ donation process.     

The high-risk recipient: the Eighth Annual American Society of Transplant Surgeons' State-of-the-Art Winter Symposium

Sung RS, Pomfret EA, Andreoni KA, Baker TB, Peters TG. The high-risk recipient: the Eighth Annual American Society of Transplant Surgeons' State-of-the-Art Winter Symposium.
Clin Transplant 2010: 24: 23–28. © 2009 John Wiley & Sons A/S.
Abstract:  The evolution of organ transplantation has produced results so successful that many transplant programs commonly see recipients with medical risks, which in the past, would have prohibited transplantation. The Eighth Annual American Society of Transplant Surgeons State-of-the-Art Winter Symposium focused on the high-risk recipient. The assessment of risk has evolved over time, as transplantation has matured. The acceptance of risk associated with a given candidate today is often made in consideration of the relative value of the organ to other candidates, the regulatory environment, and philosophical notions of utility, equity, and fairness. In addition, transplant programs must balance outcomes, transplant volume, and the costs of organ transplantation, which are impacted by high-risk recipients. Discussion focused on various types of high-risk recipients, such as those with coronary artery disease, morbid obesity, and hepatitis C; strategies to reduce risk, such as down-staging of hepatocellular carcinoma and treatment of pulmonary hypertension; the development of alternatives to transplantation; and the degree to which risk can or should be used to define candidate selection. These approaches can modify the impact of recipient risk on transplant outcomes and permit transplantation to be applied successfully to a greater variety of patients.     

Role of patient-support groups in the Thailand transplant program

Thailand started kidney transplantation in 1972 when vascular and nonvascular transplant programs were first established. Presently, we have 27 kidney, 6 liver, and 6 intrathoracic private or governmental transplantation centers, all approved and members of the Organ Donation Centres Thai Red Cross Society (ODC). They also provide organ procurement teams to the ODC. The Thai Medical Council has issued and supervised the criterion of brain death and ethical rules of transplantation to all practicing physicians since 1989. All recipients must register at these selected transplantation centers and at the ODC. When the potential donor arrives from any hospital in Thailand, the donor hospital notifies the ODC and organ procurement teams are sent out to harvest organs and transfer them to the recipient transplantation centers. The ODC computerizes and shares organs according to ABO, HLA typing, and crossmatching results. After transplantation all patients register with the Thai Transplantation Society (TTS) and the ODC. The TTS, the Thai Transplant Coordinator Society, and the ODC are responsible for the education of surgeons, physicians, nurses, patients, the public, and mass media to improve our transplant program. Bone marrow transplantation has separate regulations. Pooled, nonrelated bone marrow donors are registered at the blood-bank of the Thai Red Cross Society to provide donors for bone marrow transplantation. Financially, government support recipients only if they are state enterprise workers or civil servants. Public fund support through the ODC for organ procurement and the Kidney Foundation of Thailand is available for kidney transplantation. The ODC and the transplantation centers are the main patient-support groups for transplant programs in Thailand.     

Transplant Tourism or International Transplant Medicine? A Case for Making the Distinction

Transplant tourism is routinely denounced by influential voices such as the World Health Organization, the Declaration of Istanbul and the Madrid Resolution as an unethical solution to worldwide organ shortages. Instead, it is suggested that national deceased donor schemes and multinational organ‐sharing programs are the only acceptable avenues for addressing the organ shortage crisis. The present demand for self‐sufficiency in organ supply responds to risks such as poor clinical outcomes, and exploitation of the poor through the various commercial practices of transplant tourism. However, opponents of transplant tourism say little about what governments should do to ensure that their citizens have real and comprehensive access to all forms of transplantation. To address this complex question, we describe a current practice of international transplant medicine in Singapore. It addresses salient concerns with transplant tourism and supports the principle of national self‐sufficiency in organ supply, even as its health care system thrives and expands comprehensive transplant services to its citizens by catering to international patients. We offer a critical appraisal of the Singaporean system, and some suggestions to minimize the risk of abuse by international patients or operatives of illegal organ markets.     

Is it ethical to prioritize patients for organ allocation according to their values about organ donation?

Because the supply of deceased donor organs fails to meet demand, patients needing a transplant frequently have lengthy waits or die while waiting. In an effort to reduce waiting times, the concept of "preferred status" has emerged. In the United States, preferred status has taken the form of a community of individuals called LifeSharers. Using directed donation, this group aims to facilitate priority organ allocation to its members-people who have agreed to be organ donors. Such preferred status programs increase societal awareness about organ donation and transplantation, but they are not without ethical controversy, as some term them "clubs." In the case of LifeSharers, the potential to increase the pool of deceased donor organs is a worthy goal that would benefit the community of patients awaiting transplantation, not just LifeSharers members.     

Pediatric transplantation

Analysis of the OPTN/SRTR database demonstrates that, in 2002, pediatric recipients accounted for 7% of all recipients, while pediatric individuals accounted for 14% of deceased organ donors. For children fortunate enough to receive a transplant, there has been continued improvement in outcomes following all forms of transplantation. Current 1-year graft survival is generally excellent, with survival rates following transplantation in many cases equaling or exceeding those of all other recipients. In renal transplantation, despite excellent early graft survival, there is evidence that long-term graft survival for adolescent recipients is well below that of other recipients. A causative role for noncompliance is possible. While the significant improvements in graft and patient survival are laudable, waiting list mortality remains excessive. Pediatric candidates awaiting liver, intestine, and thoracic transplantation face mortality rates generally greater than those of their adult counterparts. This finding is particularly pronounced in patients aged 5 years and younger. While mortality awaiting transplantation is an important consideration in refining organ allocation strategies, it is important to realize that other issues, in addition to mortality, are critical for children. Consideration of the impact of end-stage organ disease on growth and development is often equally important, both while awaiting and after transplantation.     

Transplant Surgery Fellow Perceptions About Training and the Ensuing Job Market—Are the Right Number of Surgeons Being Trained?

The American Society of Transplant Surgeons (ASTS) sought whether the right number of abdominal organ transplant surgeons are being trained in the United States. Data regarding fellowship training and the ensuing job market were obtained by surveying program directors and fellowship graduates from 2003 to 2005. Sixty‐four ASTS‐approved programs were surveyed, representing 139 fellowship positions in kidney, pancreas and/or liver transplantation. One‐quarter of programs did not fill their positions. Forty‐five fellows graduated annually. Most were male (86%), aged 31–35 years (57%), married (75%) and parents (62%). Upon graduation, 12% did not find transplant jobs (including 8% of Americans/Canadians), 14% did not get jobs for transplanting their preferred organ(s), 11% wished they focused more on transplantation and 27% changed jobs early. Half fellows were international medical graduates; 45% found US/Canadian transplant jobs, particularly 73% with US/Canadian residency training. Fellows reported adequate exposure to training volume, candidate selection, pre/postoperative care and organ procurement, but not to donor management/selection, outpatient care and core didactics. One‐sixth noted insufficient ‘mentoring/preparation for a transplantation career’. Currently, there seem to be enough trainees to fill entry‐level positions. One‐third program directors believe that there are too many trainees, given the current and foreseeable job market. ASTS is assessing the total workforce of transplant surgeons and evolving manpower needs.     

Addressing organ shortages: progress in donation after circulatory death for liver transplantation

Reducing wait list mortality among patients awaiting liver transplantation remains a substantial challenge because of organ shortage. In efforts to expand the donor pool there has been a trend toward increased use of donation after circulatory death (DCD) liver grafts. However, these marginal grafts are prone to higher complication rates, particularly biliary complications. In addition, many procured DCD livers are then deemed unsuitable for transplant. Despite these limitations, DCD grafts represent an important resource to address the current organ shortage, and as such there are research efforts directed toward improving the use of and outcomes for transplantation of these grafts. We review the current progress in DCD liver transplantation.     

Use of nurse practitioners in pediatric kidney transplant: a model for providing comprehensive care to children and families

It is well documented that kidney transplantation is the treatment of choice for children with end-stage renal disease. Pediatric kidney transplant patients are a complex population because of their need for lifelong immunosuppression, potential for delayed growth and development, and increased risk of heart disease and cancer. Although many large pediatric kidney transplant programs use nurse practitioners, the role of the nurse practitioner is still emerging in relation to the transplant coordinator role. This article describes the practice of pediatric nurse practitioners caring for children who require a kidney transplant and why nurse practitioners are ideal for providing comprehensive care to this population. Transplant programs are regulated by the United Network for Organ Sharing and the Centers for Medicare and Medicaid Services. Both organizations require transplant programs to designate a transplant coordinator with the primary responsibility of coordinating clinical aspects of transplant care. Incorporating transplant coordinator activities into the role of the pediatric nurse practitioner is discussed as a model for providing care throughout the process of kidney transplantation. Transplant pediatric nurse practitioners are in a unique position to expand the care for pediatric kidney transplant patients by assuming the role of clinician, educator, administrator, and coordinator.     

Improving public awareness of organ transplantation in Japan

The goals of the Japanese chapter of the Transplant Recipients International Organization are to act as a mediator in the provision of mutual aid to transplant recipients, candidates, and their families and to provide education in both the public and professional arenas to promote organ transplantation in Japan. Since 1991, members of the Japanese chapter of the Transplant Recipients International Organization have acted as volunteer facilitators for more than 150 transplant candidates and recipients. The organization's activities have included fund-raising to cover the costs of transplantation, preparing an original donor card for distribution, and petitioning members of the Diet (the Japanese legislative body) 14 times, including speaking at public hearings twice and submitting a petition requesting early passage of the organ transplant bill. The Japanese Diet finally passed an organ transplant bill in June 1997. The activities of the Japanese chapter of the Transplant Recipients International Organization have contributed to the promotion of organ transplantation in Japan and to understanding and support for transplantation within the Japanese community as a whole.     

Research for optimization in organ donation in a macro-area after federal reform of the italian health system

Law number 91, dated April 1, 1999, established an organizational model for the activities of donation, retrieval, and transplantation of organs consisting of 4 levels: national, interregional, regional, and local. After 12 years this organizational project, called the “National Transplant Network,” has reached an excellent level of effectiveness and efficiency. Since 2001 regional administrative districts have been entrusted increasingly with responsibilities concerning health. In 2008 health federalism was approved and in 2010 the federal health fiscal system entered in force. In a country with a federal organization, where regional districts are completely autonomous, is there a reason to still have a national transplant center and 3 interregional transplantation centers? We have developed a hypothesis on the function of Interregional Transplant Centers (CIR). The risk of federalism is the fragmentation of the National Healthcare System. To adequately meet the needs of citizens, smaller regions should sign agreements with larger regions regarding transplantation programs that require a large pool of donors whereas they could retain management of patients during the presurgery and postsurgery phases. The CIR should be committed to increase organ donation, to establish shared protocols and procedures, to disseminate knowledge, and to ensure equal access to health care. In conclusion, the adoption of health and fiscal federalism provides an opportunity to build healthcare systems to optimize resources. The network model should be kept but it is necessary to overcome localism and create positive federalism.     

Report from the American Society of Transplantation on frailty in solid organ transplantation

A consensus conference on frailty in kidney, liver, heart, and lung transplantation sponsored by the American Society of Transplantation (AST) and endorsed by the American Society of Nephrology (ASN), the American Society of Transplant Surgeons (ASTS), and the Canadian Society of Transplantation (CST) took place on February 11, 2018 in Phoenix, Arizona. Input from the transplant community through scheduled conference calls enabled wide discussion of current concepts in frailty, exploration of best practices for frailty risk assessment of transplant candidates and for management after transplant, and development of ideas for future research. A current understanding of frailty was compiled by each of the solid organ groups and is presented in this paper. Frailty is a common entity in patients with end‐stage organ disease who are awaiting organ transplantation, and affects mortality on the waitlist and in the posttransplant period. The optimal methods by which frailty should be measured in each organ group are yet to be determined, but studies are underway. Interventions to reverse frailty vary among organ groups and appear promising. This conference achieved its intent to highlight the importance of frailty in organ transplantation and to plant the seeds for further discussion and research in this field.     

The present status and prospective view in organ transplantation]

Transplants are nothing new in terms of medical technology. Organ transplantation had been established in the cyclosporine era in 1980s. More than 70 percent of Transplant patients worldwide who received organs from brain-dead donors are still alive after transplantation. Organ shortage is the most serious concerning in the world. In Japan, liver transplants from living donors and kidney transplants from living donors or non heart-beating donors have been carried out regularly. The Organ Transplant Law of October 1997 paved the way for change in Japanese organ transplantation. Improving the quality of life of patient after transplant and tolerance induction are the obvious targets for organ transplantation in the next millennium.