Allison L. Allmon, Kari Shaw, Jessica L. Martens, Torricia H. Yamada, Jessica A. Lohnberg, Jessica M. Schultz, Benjamin A. Tallman
and Elizabeth M. Altmaier, PhD
Organ transplantation as a treatment of choice has increased in recent years due to concurrent advances in medical science. Patients successfully receive transplanted solid organs - kidney, heart, liver, pancreas, lungs, and intestines - and transplanted bone marrow and stem cells. The United Network for Organ Sharing (UNOS, 2010) reports more than 100,000 patients waiting for a transplant, with most waiting for a kidney or liver. That number sharply contrasts with the number of transplants completed during 2009: 28,462, of which approximately 21,000 were donations from a deceased donor and the remainder from a living donor. Because of the dramatic need for donors and the necessary immediacy of donor and recipient information, UNOS has established an online database (UNet) which provides access to information concerning waiting patients.
Organ donation presents a range of practice issues for the psychologist. The transplant recipient has been historically identified as the patient who is the subject of both accurate assessments before transplant to determine appropriateness of the procedure and ongoing psychological interventions after transplant. However, as attention to organ donation has increased, other important patients have been identified. Because most donors are deceased, decision making about donation falls to family members at a time of significant grief and distress. These donor families are also important patients in the donation process. Additionally, families of patients eligible to receive organ donation experience many concerns during the waiting period and after transplantation, and thus form an additional patient population. Although the majority of this article focuses on patients receiving transplants, the other patients are also considered.
Psychosocial issues are present before, during, and after transplantation. Patients who hope to receive a donor organ typically try to increase their medical knowledge before the transplantation process takes place. With the availability of increased information on the Internet and through support groups, most organ transplant recipients become well informed. With this knowledge, however, come additional sources of anxiety, including transplant evaluation outcome, the shortage of organs, the uncertainty of donation, and increased understanding that having a transplant may not offer a cure. This overall uncertainty is a large precipitant to psychosocial problems for individuals prior to transplant (Engle, 2001).
Psychosocial issues for individuals in beginning stages of the transplant process include pre-transplant evaluation stress; family role adjustment as the recipients’ physical capabilities change; patients’ fear and anxiety about futures; loss of comfort, independence, autonomy, and privacy; and increased strain in relationships with friends and work associates. It is essential that patients recognize and consider these issues prior to transplantation because accompanying psychological characteristics such as anxiety and depression are associated with poor health practices throughout the transplant process and impaired post transplant health outcomes.
Psychosocial stressors change during the transplant process. These changes result from relocation to the transplant center, guilt over knowing that a donor death occurred in order to procure a donor organ, coping with the medical regimen, body image concerns, and exposure to loss. Diagnosable disorders among patients during hospitalization have been identified, including anxiety disorders, cognitive impairment, depression, and even posttraumatic stress disorders (e.g., Bunzel, Laederach-Hofmann, Wieselthaler, Roethy, & Drees, 2005).
After the transplant procedure, psychosocial concerns tend to revolve around readjustment to a new lifestyle. These concerns include anxiety at discharge, perhaps due to loss of security or fear of adjustment; sadness or guilt from leaving relationships formed with other transplant patients; estrangement from family and community during readjustment to family and work roles; and increased physical and functional impairment (for reviews of psychosocial issues in organ transplant, see Dew et al., 2000; Olbrisch, Benedict, Ashe, & Levenson, 2002).
This paper overviews practice issues in organ donation. Primary among these are clinical assessment decisions in evaluating patients for donation reception, patient education and intervention to increase treatment compliance, and ethical issues of donation and procurement. We also consider the psychosocial aspects of the transplant experience for patients and families, and the potential multiple roles of psychologists and other health care providers.
Evaluation of Patient for Transplant Appropriateness
Due to the limited organs available for transplantation, a thorough evaluation of transplant candidates is required to ensure each organ recipient will care for the organ and have the best possible post-transplant outcome. In addition, there are significant financial and time resources involved in organ transplantation and subsequent care which underscore the importance of identifying appropriate candidates for transplant and ensuring before surgery that such resources are available to patients. Evaluation for organ transplantation is often multifaceted and conducted by several disciplines, such as medicine, psychology, neuropsychology, and social work. This section will detail the psychosocial and neuropsychological evaluations conducted for transplant patients, including the purpose and method for each. While evaluations are also done for live organ donors when available, this section will focus on the evaluation of the organ recipient.
Organ transplantation has the potential to significantly improve the quality and quantity of one’s life. Unfortunately, there is a significant shortage of donor organs available to patients in need. Therefore, evaluations are conducted to ensure patients will, indeed, benefit from surgery. There are two main purposes for conducting psychosocial evaluations of transplant patients: to ensure that the patient sufficiently understands the transplant process and to identify issues that may adversely affect the outcome. The evaluation also provides the transplant team with a comprehensive understanding of the patient’s strengths and coping abilities during times of stress (Olbrisch & Levenson, 1995).
Because organ transplantation is a serious and life-altering surgery, it is critical that the patient and the patient’s family understand the long-term compliance required for positive results as well as surgical risks. The psychosocial evaluation should assess the patient’s understanding of the procedure itself as well as the patient’s acceptance of the requirements for maintaining a positive surgical outcome (e.g., compliance with immunosuppressive therapy, diet). In addition, the psychosocial evaluation usually includes an evaluation of the support person identified by the transplant patient. This person serves as the primary caretaker for the patient after the surgery. This role requires a substantial time commitment; thus the psychosocial evaluation allows the clinician to assess whether the support person is aware of and accepts the commitments required to care for a transplant patient.
The second main purpose of the psychosocial evaluation is to identify potential risk factors that could complicate surgical outcome. Risk factors such as substance abuse, compliance issues, and serious psychopathology can increase postoperative noncompliance and morbidity (Olbrisch et al., 2002). Evaluating such risk factors has two objectives: determining who should get an organ and identifying what resources the patient might need or what rehabilitation is needed before proceeding with the surgery. For example, learning that a patient has poor coping skills and a history of depression does not mean that patient is ineligible for a transplant from a psychosocial perspective. Rather, it tells the clinician that the patient may need services, such as therapy, before proceeding with the transplant procedure to ensure that the patient can adequately care for him/herself and the new organ.
The method used to obtain a psychosocial evaluation of transplant candidates can vary significantly according to medical facility,third-party payer requirements, and specific organ of transplant. The evaluation can be conducted by a psychiatrist, psychologist,and/or social worker, depending on a site’s protocol. Some programs have a social worker conduct the psychosocial evaluation and only make referrals to psychologists or psychiatrists if indicated (Levenson & Olbrisch, 1993).
The criteria and method of conducting the evaluation can also vary significantly, from a clinical interview to a full battery of psychological assessments. For example, Medicare legislation requires psychosocial assessments and sets certain criteria, although the individual transplant programs often determine the specifics of implementation. Criteria for psychosocial evaluations also vary depending on the organ transplanted.For instance, psychosocial criteria for kidney transplants tend to be the most lenient while cardiac programs have the most stringent criteria (Levenson & Olbrisch,1993).
Despite the variations in psychosocial criteria used to determine transplant appropriateness across programs and organs, certain criteria are typically assessed. Assessing a patient’s support system is one critical component of assessment. Because positive support networks are linked to more favorable outcomes (Olbrisch et al., 2002), the clinician should assess the quantity and quality of a patient’s support system and encourage access to that system. Substance abuse is another factor that is assessed during a psychosocial evaluation. Current addictive drug use or heavy alcohol use is often considered an absolute contraindication for most cardiac, liver, and renal transplant programs while drug, cigarette, or alcohol use in the past six months often constitutes a relative contraindication (Levenson & Olbrisch, 1993).
Psychiatric disorders are another focus of psychological evaluations. While some psychiatric disorders are linked to poor post transplant outcomes, psychiatric history itself does not necessarily predict a poor outcome (Olbrisch et al., 2002). A survey of cardiac, liver, and renal transplant programs indicates that the psychopathology most often considered absolute contraindications include active schizophrenia, current suicidal ideation, and dementia (Levenson & Olbrich, 1993). Other factors considered a relative contraindication include mental retardation, recent or distant suicide attempts, current or past affective disorders, controlled schizophrenia, and personality disorders.
Another major area of focus for the psychosocial evaluation is compliance. Dietary and medical noncompliance are most strongly linked to poor transplant outcome or death, so it is critical to assess a patient’s ability to comply with the stringent post-transplant medical regimen. If the patient shows a pattern of medical noncompliance, the evaluator may suggest that the patient improve compliance before being considered an appropriate candidate.
The psychosocial evaluation provides the transplant team an opportunity to assess psychological factors that may inhibit successful transplant outcomes. If found, there are recommendations (e.g. develop better coping skills, demonstrate compliance) so that the patient may be considered a more appropriate transplant candidate in the future.
End-stage organ failure diseases are often associated with cognitive impairment (Olbrisch et al., 2002). Thus, neuropsychological evaluation is an invaluable part of the transplant process by providing information about the effects of organ disease on the brain. In addition, obtaining pre-transplant cognitive functioning can help determine cognitive capacity to make medical decisions regarding organ transplantation and potential compliance with treatment regimen post-transplant. Furthermore, neuropsychological evaluation can also be conducted post-transplant to provide continuity of care and recommendations for sustained compliance, as well as to assess for cognitive improvements due to transplantation and/or worsening function due to transplantation complications (e.g., hypoxia during surgery) or a comorbid cognitive disorder.
Organs act synergistically. Thus a diseased organ will likely affect other organ function in hosts differently. Generally, however, it is known that a compromised organ can affect the brain (and therefore cognition) in several ways. First, a diseased organ may not provide enough essential substances, such as oxygen and glucose, to the brain. Additionally, toxic substances may not be excreted from the body due to the dysfunction of a diseased organ, which can affect the integrity of the brain. Finally, treatments, such as products from dialysis, can affect brain function. It has been demonstrated that a number of diseases that necessitate organ transplantation affect cognition (for a review, see Farmer, 1994). For example, the liver functions to remove toxic products from the body, such as ammonium, and increased ammonium levels have been known to cause hepatic encephalopathy. Similarly, individuals diagnosed with kidney disease often demonstrate cognitive deficits as a result of long-term dialysis and an accumulation of toxic substances, including increased aluminum concentrations. Attention and executive functioning (e.g., organizing, planning, and decision-making) are the most affected cognitive domains in potential candidates for kidney and liver transplants (Lacerda et al., 2008). However, transplants may help to ameliorate cognitive deficits (Olbrisch et al., 2002).
Similar to a psychosocial evaluation, neuropsychological evaluation of transplant candidates can vary. It would be impossible to cite an exact neuropsychological protocol that could serve all transplant patients. However, minimally a clinical interview and cognitive screen is utilized to determine eligibility. Based on cognitive status and eligibility criteria, a more comprehensive neuropsychological evaluation provides additional information about specific cognitive deficits related to a diseased organ and a transplant candidate’s ability to function and cope. Cognitive deficits do not necessarily preclude an individual from receiving a transplant; rather, it is important to highlight cognitive strengths and weaknesses to identify potential supports and/or coping mechanisms to ensure the candidate receives benefit from the transplant.
There are several considerations for assessing organ transplant candidates for cognitive dysfunction. In addition to a psychosocial assessment, it is important to consider premorbid levels of functioning, affective states, and disorders that may affect cognition and personality. Neuropsychological assessment ideally serves to capture cognitive functioning in the domains of attention/ concentration, executive function, psychomotor ability, visuospatial reasoning, and both learning and memory. Although evaluations should be thorough, it is also necessary to consider that the transplant candidate likely suffers from a chronic health problem that may cause significant fatigue, consequently making lengthy administrations distressing. Accommodations are made based on the individual and specific needs of each transplant candidate.
Taken together, psychosocial and neuropsychological evaluations provide invaluable information about a transplant candidate’s capacity, functioning, quality of life, and cognition to inform the clinician of the unique characteristics of candidates to guide successful transplantation. Similarly, psychosocial and neuropsychological evaluations serve to highlight issues that may complicate post-transplant recovery. It is important to note that both psychosocial and neuropsychological evaluations are not utilized exclusively to rule out transplant candidates; rather, they serve to identify additional resources to obtain the best possible transplant outcome.
Patient Education and Compliance
Treatment compliance is an important issue for transplant patients, as it directly affects transplant outcome and quality of life. Compliance, as defined in the transplant literature, refers to adherence to physician instructions on the part of the patient. Post transplant care is essential in maintaining organ function, and failure to adhere to post-transplant recommendations may lead to rejection, organ loss, or death. This area of patient function is critical, as research suggests noncompliance rates ranging from 20-50 percent among transplant recipients (Laederach Hofmann & Bunzel, 2000).
Areas of Noncompliance
Medical noncompliance refers to patients’ failure to adhere to medication regimens, specifically immunosuppressant medication. Nearly one-fifth of transplant patients do not comply with medication regimens set forth by their doctors. Because immunosuppressant medication plays a significant role in avoiding organ rejection, compliance is crucial. Patients cite medication side effects, cost, long-term effects, and difficulty in preparation as deterrents for medication nonadherence, while forgetting is the most common reason for medical noncompliance. Research has shown that the more often a dose must be taken per day, the less likely the patient is to complete the medication regimen. Noncompliance in this area not only compromises organ functioning, but also puts a significant strain on resources and potentially risks the lives of those waiting for lifesaving organ transplants (Laederach- Hofmann & Bunzel, 2000).
Appointment noncompliance represents failure to maintain contact with physicians following the transplant. Difficulty keeping appointments may indicate medical noncompliance and is monitored carefully. Substance abuse is another area of concern for transplant patients. For certain transplant recipients, and those receiving heart transplants in particular, substance abuse history is the strongest predictor of noncompliance. Nicotine abuse also poses a significant threat to survival among transplant patients. Smokers are likely to continue the habit after receiving a transplant, increasing both morbidity and mortality rates (Laederach-Hofmann & Bunzel, 2000). Compared to other substance- abusing patients, alcohol-abusing patients are not as likely to return to preoperative consumption behaviors unless they had been sober for only a short period of time preoperatively.
Physical exercise and diet are the final areas of noncompliance. Physical exercise, diet, and weight are common concerns for graft recipients, particularly heart transplant recipients (Laederach-Hofmann & Bunzel, 2000). It is common for transplant patients to be overweight and inactive. Studies have shown that even when knowledgeable of the risks, these patients exhibited noncompliance behaviors.
Graft-rejection education practices
Many of the aforementioned forms of noncompliance may be caused or exacerbated by ineffective organ transplant patient education practices. Currently, patients receive information about how to prevent graft rejection before transplantation occurs, but few patients incorporate the information into their health maintenance practices. Most do not actively search for additional information about rejection prevention, and some patients believe that willpower is enough to ensure a successful graft (Nilsson, Persson, & Forsberg, 2008). Current patient education practices focus on preventing graft rejection through compliance with immunosuppressive treatment but do not appear to consider patients’ worries about graft rejection. Patients are routinely informed about successful treatment outcomes and anticipated developments in anti-rejection pharmacology. However, few patients report confidence in having positive transplant outcomes following organ transplant education sessions (Nilsson et al., 2008), and patients are frequently surprised and frightened when episodes of rejection occur.
To better serve transplant patients and increase compliance, psychologists are in a good position to modify current graft-rejection education practices. Nilsson et al. (2008) found that patients explain graft rejection in one of five ways: as an abstract threat to life, a concrete threat to health, a phenomenon controlled by trust in the body, something caused by one’s own mistakes, and failure to control the graft process, or a situation that can be mastered with experience and knowledge. Each explanation of graft rejection involves different patient beliefs about safety, fear, control, identity adjustment, and the utility of compliance, so graft education can be tailored to offer support and advice in line with individual patients’ personal explanation of graft rejection.
In addition, under most explanation models, patients create concrete visual images of graft rejection. Education programs serve patients better by asking them to describe these images so that treatment providers can understand patients’ point of view and help them gain realistic perspectives about graft rejection. Moreover, daily medication regimens and post-operative biopsy procedures can be fear-inducing for graft recipients. Therefore, professionals involved in patient care, not just pre-operative physicians, should be apprised of patients’ fears and prepared to acknowledge them and provide appropriate information and education about graft rejection and outcomes.
Ethical Issues in Organ Transplantation
There are many ethical issues that psychologists encounter when working as a member of a transplant team or with patients seeking organ transplants. Among these issues are overlapping roles of psychologists, integrating ethical principles into assessment decisions, concerns related to donors, and developing competency for work within this area.
When working in an organ transplant setting, psychologists have allegiances to three distinct groups: the individual patient, the pool of all potential transplant recipient patients, and the transplant team (Olbrisch, 1996). The complexities of the psychologist’s role and multiple allegiances necessitate making explicit professional role and limits to patients and the team. For example, a psychologist needs to build rapport with a patient in conducting an assessment, while making clear through adequate informed consent that the evaluation may bear upon transplant decisions (i.e. the psychologist’s responsibility to the potential pool of transplant patients).
Through the evaluation, a psychologist may identify the patient as in need of mental health services, either for treatment of a current diagnosis or for adjustment/support through the stressful transplant process. Certainly a referral to another provider is appropriate; however, sometimes a patient may desire to enter treatment with the evaluating psychologist because of the established relationship or the specialized knowledge of the psychologist. In this case, psychologists make clear their roles as impartial evaluator, advocate, and therapist to both patient and transplant team. Patients must know if material learned during the course of therapy may be communicated to the transplant team and if this information could potentially affect waiting list status before starting treatment.
The work of an organ transplant team is emotionally charged and can put members, including psychologists, at risk of burnout. Psychologists protect themselves through preventative measures (i.e. self-care) in addition to self-reflection on their professional well being. Members of a transplant team may look to the psychologist to provide emotional support for their own struggles (Olbrisch et al., 2002). In these cases, psychologists need to make clear their boundaries while providing education to the team about mental health and professional well-being.
The overriding philosophical question of a psychological transplant evaluation is who qualifies for a transplant, especially in light of the scarcity of available organs. The ethical principle of justice is particularly relevant. Patients should meet a minimum standard of psychosocial functioning consistent across evaluations. However, psychologists should be aware of personal values or opinions that may influence their evaluation recommendations. For example, sometimes judgments of social worth or responsibility (e.g., history of drug or alcohol use, prisoner status, age) are entangled in assessment of psychosocial factors impacting compliance. In these cases, psychologists rely on empirical literature and consultation to guide their decision-making and monitor personal reactions to their work. Social justice is a particular concern, as organ transplantation carries enormous financial burden for the patient.
Living donors are increasingly making decisions to donate for liver, kidney, or bone marrow transplants, often for altruistic reasons. Living donors may be family members, friends, or strangers to the transplant recipient. Psychological evaluations can be conducted to determine the decision-making process of the donor’s motivation, social support, and behavioral and psychological health (Olbrisch, Benedict, Haller & Levenson, 2001). Informed consent, in addition to the donor’s understanding of the procedure (e.g., risks, recovery time, and future relationship with recipient especially if donor is a stranger), are particularly important. In conducting the evaluation, psychologists should be attuned to coercion and ensure that the living donor is making an autonomous decision.
Organ transplantation is an exciting practice area for psychologists; however, it is vital that psychologists develop competency before practicing in this area as dictated by the APA Ethical Principles of Psychologists and Code of Conduct (2002). After becoming licensed, a psychologist must shift to self-assessment of competency (Kerns, Berry, Frantsve, & Linton, 2009). Psychologists interested in this practice area should build relationships with local transplant centers, immerse themselves in the relevant literature, seek out specialized training and supervision, and accurately evaluate their competency to practice in this area of clinical health psychology.
The transplant experience can be stressful, even traumatic, for transplant recipients, their significant others, and donors’ families. Even after successful transplant, patients experience some degree of dysfunction, and quality of life can be compromised (for review, see Kugler et al., 2009). Regular psychological interventions can be utilized to address problems before, during, and after transplant.
Clinicians can facilitate support groups and bibliotherapy for patients and families at the stages of the transplant process to normalize and respond to psychosocial issues (Hodges, Craven, & Littlefield, 1995). Intervention programs for enhancing positive adaptation among chronic illness populations (e.g., cancer) are developed and supported by research (for a review see Antoni, Carver, & Lechner, 2009). Such programs use cognitive behavioral stress management (CBSM) techniques - changing faulty cognitive appraisals of stressors, enhancing emotional processing, improving relaxation skills, and bolstering social support—to increase psychological and physiological outcomes. Such programs offer psychosocial interventions for enhancing positive adjustment among transplant populations.
While discussions of psychosocial interventions traditionally focus on reducing negative sequelae of the transplant experience, individuals can also experience growth following stressful or traumatic life events, such as an organ transplant. The term posttraumatic growth refers to a positive psychological change resulting from a stressful life event (Tedeschi & Calhoun, 1996, 2004). For growth to take place, an event, such as a life threatening medical condition, challenges assumptions about life. Such assumptions include life being predictable and bad things not happening to good people.
Reports of growth are documented among several trauma populations, including sexual assault (Frazier, Conlon, & Glaser, 2001), war combat (Fontana & Rosenheck, 1998), natural disasters (McMillen, Smith, & Fisher, 1997) and cancer (for a review see Stanton, Bower & Low, 2006). Individuals report growth in a number of domains, including changes in life perspectives, becoming closer with family or friends, increased understanding of personal strengths, changes in health perspectives and behaviors, and changes in religiosity and spirituality (Tedeschi & Calhoun, 1996; Tallman, Altmaier, & Garcia, 2007).
Research examining growth among solid organ transplant populations is lacking; however, posttraumatic growth is reported among individuals receiving bone marrow transplants (Widows, Jacobsen, Booth- Jones, & Fields, 2005). For example, Tallman, Altmaier and Garcia (2007) found that more than 90% of their sample reported posttraumatic growth one and three years after transplant; growth reported one year after treatment related to improved function and reduced depression.
Working with transplant patients presents the psychologist with a unique opportunity to assist individuals in influencing their post-transplantation adaptation. Calhoun and Tedeschi (2009) use the term expert companion to refer to clinicians who provide support during the time period following challenging life events. Clinicians should consider several of these roles: expert companions can provide non-judgmental general support, help patients reconsider beliefs and goals, reflect themes of growth, and help patients revise their life narratives. However, it is also possible that growth may be an illusory process (McFarland & Alvaro, 2000) or a cognitive bias (Taylor, 1983) that individuals use to manage psychological distress. Thus, expert companions respect patients’ perceptions of their experience, coping styles, and worldviews to facilitate the post-adjustment process.
It may also be advantageous to assist transplant patients in understanding the severity of their situation and in setting realistic expectations for the future. It is important to note that not all individuals experience growth after trauma. Clinicians should avoid the assumption of universal growth after trauma as that assumption could bring harm to individuals when growth has not been experienced.
Caring for donor families involves interventions targeted to issues of grief and loss. Maloney and Wolfelt (2001) note particular challenges face donor families. Initially, families must face the decision for or against donation. In spite of the importance of this decision for donation, there are many barriers to its implementation. Families are usually shocked and disbelieving; donation requests often occur after automobile or other accidents, and family members may be summoned to the hospital without even knowing their loved one is on life-support. Procurement coordinators may be more focused on the facts behind the decision, for example, being sure families understand the definition of brain death and the steps of donation, and less emotionally available for support. Psychologists can serve a critical role by giving family members support for anger and grieving, and promoting rituals surrounding death, including viewing the body.
After donation, grieving families continue to need care and support. Grief counseling is a critical aspect of post-donation care. Best practices in grief counseling (see Altmaier, in press, for review) include companioning rather than expert roles, helping patients consider and evaluate myths about grief and loss, and determining if the grieving process is becoming complicated grief. The latter is an issue of some controversy, and the definition and diagnosis of complicated grief remains unsettled (Howarth, in press). Advocacy within communities is an essential role for psychologists, enhancing resources available for families and significant others in the grieving process.
The area of organ donation presents psychologists with many opportunities for assessment and intervention. The patient populations of donor recipients, donor families, and families and communities of donor recipients each present with challenges amenable to intervention and advocacy. As organ donation procedures are applied to a greater variety of medical systems, and with the advancement of medical procedures, it is likely that roles for psychologists in the process will increase.
Psychologists are integral members of interdisciplinary care and are viewed as a link between numerous medical disciplines. As integrated health care becomes the norm across the United States, psychologists need to expand their clinical competency to encompass transplant related issues, including assessment in and psychosocial treatments for transplant populations. Psychologists have the opportunity to enhance their interdisciplinary team care by educating team members on particular factors impacting transplant patients.
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