Intrafamilial kidney transplants: The impact on the sibling relationship among donors, recipients and volunteers
VI Table of Contents PAGE Title Page i Signature Page ii Acknowledgements iii Abstract iv Table of Contents vi Dedication ix CHAPTER 1. Brief Introduction & Literature Review 1 1.1 Introduction 3 1.2 Kidney Transplantation 4 a. History 4 b. Kidney Transplant Statistics 5 c. Donor Sources 7 d. Evaluation and Selection Process 8 1.3 Kidney Transplant Recipients 13 a. Pre-Transplant 13 b. Post-Transplant 14 i. Psychosocial Losses 15 ii. Psychosocial Gains 17 1.4 Living Related Donors 18 a. Pre-Transplant 18 i. Decision Making Processes 19 b. Post-Transplant 23 i. Psychosocial Losses 23 ii. Psychosocial Gains 25 1.5 Living Related Volunteers and Nondonors 26 a. Pre-Transplant 26 i. Decision Making Process 26 b. Post-Transplant 27 1.6 Impact of Kidney Transplants on Family Relationships 29 a. Sibling Relationships 32 1.7 Summary 33 2. Methods 38 2.1 Phenomenological Approach 38 2.2 Participants: Adult Recipients, Donor, and 39 Volunteer Siblings of Kidney Transplants
Table of Contents (Continued) 2.3 Inclusion and exclusion criteria 41 2.4 Recruitment 43 2.5 Human subjects 44 2.6 Procedures and Measures 46 a. Demographic questionnaire 46 b. Semi-structured interview 46 c. Analysis of data 50 d. Setting 59 3. Results 60 3.1 The Impact of the Illness 62 3.2 Doctor and Family Pressure 63 3.3 Risks and Benefits 65 3.4 Preparation 66 3.5 Surgery Outcomes 67 3.6 Physical Pain and Complications 69 3.7 Family Support 71 3.8 Feelings of Loss 76 3.9 Denial 78 3.10 Favoritism 80 3.11 The Close Sibling Relationship Growing Up 83 3.12 Transplant Created Bonds 86 3.13 A Selfless Act 89 3.14 The Humble Donor 90 3.15 Working as a Team 92 3.16 Positive Attitude 93 3.17 View of the Future 97 3.18 Post-Transplant Intimacy 98 3.19 Relationship Expectations 103 3.20 Overall Positive Experience 105 3.21 Summary 108 4. Discussion 112 4.1 The Impact of the Illness 112 4.2 Doctor and Family Pressure 114 4.3 Risks and Benefits 116 4.4 Preparation 118 4.5 Surgery Outcomes 119 4.6 Physical Pain and Complications 121 4.7 Family Support 123 4.8 Feelings of Loss 127
viii Table of Contents (Continued) 4.9 Denial 130 4.10 Favoritism 133 4.11 The Close Sibling Relationship Growing Up 137 4.12 Transplant Created Bonds 138 4.13 A Selfless Act 141 4.14 The Humble Donor 141 4.14 Working as a Team 144 4.15 Positive Attitude 145 4.16 View of the Future 147 4.17 Post-Transplant Intimacy 149 4.18 Relationship Expectations 15 3 4.19 Overall Positive Experience 155 5. Implications of Findings 157 5.1 Clinical Implications of Findings 158 5.2 Limitations 161 5.3 Future Research 164 5.4 Conclusion 170 6. References 176 7. Appendices 191 7.1 Appendix A: Demographic Questionnaire 193 7.2 Appendix B: Consent Form 195 7.3 Appendix C: Semi-Structured Interview: Kidney 199 Transplant Recipients 7.4 Appendix D: Semi-Structured Interview: Kidney 206 Transplant Donors 7.5 Appendix E: Semi-Structured Interview: Kidney 214 Transplant Volunteers 7.6 Appendix F: Themes 221 7.7 Appendix G: Listserv Message Posting 223 7.8 Appendix H: Connecticut Referral List 224 7.9 Appendix I: New Jersey Referral List 227 7.10 Appendix J: New York Referral List 233 7.11 Appendix K: Pennsylvania Referral List 241 7.12 Appendix L: Debriefing Statement 247 7.13 Appendix M: Request for Results 249 7.14 Appendix N: Demographic Tables 250 7.15 Appendix O: Sample Report 253
ix Dedication This study is dedicated to my brother, Shane Duffy, and the tens of thousands of other organ donors and their families, for their selflessness and courage to give the gift of life. I honor you for your unwavering devotion and loyalty to your family, friends, and those in need.
Kidney Transplants 1 Brief Introduction The continued advancement of medical technologies in the area of organ transplantation has led to an increased use of live donors for kidney transplants. With the introduction of improved surgical procedures, the physical risk to the donor is now very small. However, while most donors describe the experience as a "miracle," there is also a significant amount of stress associated with the process; research studies exploring the psychological risks report mixed results. In addition, when evaluating the outcomes of transplantation, researchers mostly concentrate only on the donor and recipient. However, those in the family who do not donate can also be significantly affected by the illness of their relative and the overall transplantation process. More studies need to focus on this forgotten population, of the family members who do not donate, with particular emphasis on siblings. The central purpose of this research is to investigate the sibling relationship of kidney donors, recipients and volunteers following transplantation. No studies were found exploring this area, which is surprising. Brothers and sisters are usually the best medical match for the recipient and, as a result, are not only preferred, but also most often used as live donors. Therefore, it is important to explore the effects on the sibling relationship following transplantation. This is especially crucial to examine in those families where at least three siblings are involved in which one will not be included in the actual donation.
Kidney Transplants 2 With increasing numbers of kidney transplant centers encouraging live donation, the limited psychological research involving volunteers and the nonexistent research evaluating the effects on the sibling relationship between donors, recipients and volunteers, it is imperative that this unique area be explored further. As surgical procedures continue to improve, more people will be able to profit from organ transplants. That psychologists may soon be exposed to more organ transplant families in the therapy room is suggested by the mixed results of the psychological effects of transplantation and the lack of long-term studies on these effects. Not only did this research potentially benefit those families affected by a kidney transplant, but it also hopefully provided valuable information for psychologists and the rest of the medical community.
Kidney Transplants 3 Literature Review Introduction One of the major advancements of modern medical technology is organ transplantation. Dating back to the second century BC when the Chinese claimed to have transplanted tissues and organs, including a heart (Gibson, 1996), modern transplantation probably began in the 18l century with the first successfully replaced tooth. Since then, it has developed rapidly as a life-saving procedure and continues to improve and grow each year (Baluch, Randhawa, Holmes & Duffy, 2001; Shanteau & Harris, 1989). Due to better screening and improved medications over the years, the number of patients who might benefit from a transplant has grown steadily. However, there are not enough donors to meet the rising demand and therefore potential transplant recipients may wait for years for a suitable match (Baluch, Randhawa, Holmes & Duffy, 2001; Fisher, 2003; Shanteau & Harris, 1989). The waiting list for kidneys has increased at an annual rate of 12 percent (Beasley, Hull, & Rosenthal, 1997). The longer the delay; the greater the possibility of medical complications or death. This is a serious concern, with more than 17 patients dying each day while waiting for a donor (Olbrisch, Benedict, Ashe, & Levenson, 2002, United Network for Organ Sharing [UNOS], 2009). As of 2002, in the United States 871 solid organ transplant programs in 259 institutions, were recognized by the United Network for Organ Sharing and
Kidney Transplants 4 have performed over 352 thousand transplants since 1988 (Olbrisch, Benedict, Ashe, & Levenson, 2002). Current solid organs transplanted include the kidney, the most transplanted organ, liver, heart, lung, intestine, eyes, pancreas and even brain tissue (United Network for Organ Sharing, [UNOS], 2009; Gibson, 1996). Kidney Transplantation History Kidney programs have existed longer than any other type of transplantation (Levenson & Olbrisch, 2000) with the first successful human transplant being performed between identical twins in Boston, Massachusetts in 1954 (Gibson, 1996). This surgery is performed for individuals with end-stage renal disease1, typically caused by hypertension, diabetes, polycystic kidney disease and the use of nephrotoxic drugs (Olbrisch, Benedict, Ashe, & Levenson, 2002). Once this occurs, patients can be treated with dialysis, the process of cleaning the blood through an artificial kidney machine. This is a significantly invasive and time-consuming process, which often requires at least 1 Also known as ESRD. This is kidney failure. It means that the kidneys have lost about 85 to 90 percent of their ability to function. The kidneys'job is to, filter toxic wastes from the blood. These wastes can build up in the body and cause death if not removed by treatment. 2 Polycystic kidney disease, or PKD, usually refers to a genetic or inherited disease that is sometimes called "adult PKD" because it normally appears in adult life. A less common type of PKD occurs primarily in babies and children. In PKD, cysts, or fluid-filled pouches, are found primarily in the kidney but they can also affect other organs, including the liver, pancreas, spleen and ovaries.
Kidney Transplants 5 three weekly sessions ranging from four to eight hours, and also includes strict dietary and fluid in-take restrictions (Devins et al, 1983). As a result, transplantation, if possible, poses a more appealing form of treatment. The introduction in the 1980's of the anti-rejection medication, cyclosporine, together with improvements in laparoscopic surgical techniques, has resulted in unprecedented patient and graft survival rates (Martin, 2000). This newer and more advanced form of surgery has proven to show comparable graft function in recipients and shorter hospital stays and recovery times for donors (Shaffer, Sahyoun, Madras & Monaco, 1998). As kidney transplants have become more common, the technology has greatly improved, and as living donors are being chosen as candidates with improving success rates, the interest of the role and need for psychosocial input has rapidly increased (Fisher, 2003). The use of living related donors for kidney transplantation also permits timing of the surgery to optimize recipients' health (Ottelin & Bueschen, 1994). Kidney Transplant Statistics As of February 04, 2009, the United Network for Organ Sharing (2009) has estimated that there are at least 78,312 candidates on the national waiting list for kidney transplants. Those waiting for a kidney represent the largest number of people waiting for an organ. The next highest organ in need is the liver with Drugs/medications that are poisonous to the kidney
Kidney Transplants 6 15,835 candidates currently waiting on the national list. In 2008, 13,743 kidney transplants were performed with 4,927 being from live donors (United Network for Organ Sharing [UNOS], 2009). These statistics are significantly lower then what they were in 2007, when 16,628 kidney transplants were performed and 6,041 of those being with live donors. In fact, the 2008 statistics is the lowest the numbers have been for kidney transplants since 2000; however the waiting list has continued to increase (United Network for Organ Sharing [UNOS], 2009). According to the most recent UNOS (January 30, 2009) data available, since 1988, 264,529 kidney transplants have been performed in the United States; 91,589 of which were from living donors and over 31 thousand of those being siblings. In other words, since 1988, over one-third of all kidneys transplanted in the US have been from live donors (Shaffer, Sahyoun, Madras & Monaco, 1998) with one-third of those being siblings. The sibling relation actually represents the most utilized family relation for kidney donors, with parents and children both tied for second largest family relation with slightly over 14 thousand donors each (United Network for Organ Sharing [UNOS], 2009). According to the UNOS 2007 annual report, survival rates for recipients have now risen to well over 90 percent (United Network for Organ Sharing [UNOS], 2009). The Human Renal Transplant Registry statistics showed that 74 percent of patients with sibling donors survived two years post transplant with functioning kidneys in comparison to only 43 percent of the patients with cadaver kidneys
Kidney Transplants 7 (Simmons, Klein & Simmons, 1987). However, within the field of kidney transplantation, there remains continued uncertainty surrounding psychological outcomes for the donor and the recipient (Fisher, 2003). Donor Sources A transplantable organ may be obtained from one of four potential donor sources: (1) living donors related to the potential recipient; (2) living emotionally related/unrelated donors, such as spouses or friends; (3) living unrelated paid donors (both rewarded gifting and commercialized organ donation); and (4) cadaver organ donors (Land, 1989; Simmons, Klein & Simmons, 1987). The living donor category is further broken down by Simmons, Klein & Simmons (1987) into donor, volunteer, verbal offer, nondonor, and relative ineligible from the start or person with a medical or age excuse. By definition, the donor is the person who actually donates the organ; the volunteer is a family member who expresses willingness to donate and is blood tested; the nondonor is the sibling, parent or child who declines to be tested for the donation process; and the verbal offer is those family members in a larger family who offer their organ if no other closer relative is found. Those who are ineligible from the start or who have a medical excuse are family members under the age of 16 and over the age of 65, or those who have a well-recognized medical condition rendering them ineligible.
Kidney Transplants 8 The best donor is usually a blood relative, in particular, an identical twin or sibling. Physicians place considerable emphasis on the siblings and typically encourage the recipients to search among their brothers and sisters (Simmons, Bush, & Klein, 1987). Siblings are most likely to become the donor since there is typically a larger pool of them to choose from and because those who volunteer are likely to be a better match then other relatives (Simmons, Bush, & Klein, 1987). Evaluation and Selection Process Since the earliest days of organ transplantation, psychiatrists and other mental health professionals, such as nurse coordinators, have been involved in the screening and selection process of candidates to receive these surgeries (Levenson & Olbrisch, 2000). Psychosocial evaluation of transplant candidates is now a widespread clinical practice with important ethical implications as a result of the increasing number of transplants performed each year (Presberg, Levenson, & Olbrisch, 1995; Mori, Gallagher, & Milne, 2000). As a result, the participation of psychologists and psychiatrists has become virtually universal for certain organ programs. Psychological screening of organ transplant candidates is routine at most transplant centers, but the methods of evaluation and the criteria employed appear to vary greatly among centers (Olbrisch, Benedict, Ashe, & Levenson, 2002;
Kidney Transplants 9 Mori, Gallagher, & Milne, 2000). Most screenings are performed by a transplant nurse coordinator, transplant physician, social worker, psychologist or psychiatrist (Levenson & Olbrisch, 2000; Bia et al, 1995). Psychological evaluations are conducted in order to assess knowledge and capacity for consent, to identify potential risk factors and screen out patients who demonstrate behavioral problems particularly in the areas of compliance and substance abuse, or who exhibit serious psychopathology which could impact survival (Levenson & Olbrisch, 2000; Olbrisch, Benedict, Ashe, & Levenson, 2002; Olbrisch, 1996; Twillman, Manetto, Wellisch, & Wolcott, 1993). Evaluations are also conducted to determine the needs of the patient and family for support through the transplant process. Overall, assessment processes are utilized to gain a full understanding of the strengths and weaknesses of the patient and to help arrive at the best course of action for the patient (Olbrisch, 1996). The primary goal of the living donor evaluation is to ensure the safety and well-being of the donor (Kasiske, 1998). From a donor standpoint, advantages of the psychosocial evaluation include medical compatibility, helping the potential donor to make an informed decision, discerning the donor's intentions or motives and possibly gaining some predictive understanding of how the donor may react post transplantation (Fisher, 2003). Additionally, the psychosocial assessment addresses issues of coercion, social support, behavioral health, and the donor- recipient relationship (Olbrisch, Benedict, Ashe, & Levenson, 2002; Fisher,
Kidney Transplants 10 2003). Ideally, in order to eliminate any possible conflict of interest, donor evaluations should be conducted by mental health professionals who are not members of the transplant team (Kasiske, 1998). The majority of transplant centers in the United States will exclude donors based on their age. The cut-off is usually between the ages of 55 and 75 years old and those under the age of 16 (Bia et al, 1995). Clients taking antihypertensive medication or those with diabetes are also excluded as possible donors most of the time. Any history of drug or alcohol abuse, whether current or in the past, can also greatly affect someone's chances of being accepted as a donor (Bia et al, 1995). Clinical interviews are the most common evaluation approach, although some programs also require formal psychological testing. Interviews are most often used to determine psychiatric appropriateness (Mori, Gallagher, & Milne, 2000). Evidence for the reliability and validity of this interview approach in selecting candidates is provided by studies employing both the Psychological Assessment of Candidates for Transplantation (PACT) and the Transplant Evaluation Rating Scale (TERS) rating scales (Levenson & Olbrisch, 2000; Klapheke, 1999; Twillman, Manetto, Wellisch, & Wolcott, 1993). The PACT was designed as a brief and comprehensive scale to be completed immediately following the evaluation interview (Levenson & Olbrisch, 2000). The TERS consists of 10 items and elicits a general rating and current level of functioning of
Kidney Transplants 11 patients on a number of biopsychosocial variables (Twillman, Manetto, Wellisch, &Wolcott, 1993). It is expected to be negatively correlated with the PACT (Presberg, Levenson, & Olbrisch, 1995), meaning that higher scores on the PACT is an indication of a better rating, whereas, higher scores on the TERS is consistent with a poorer rating. Mori, Gallagher, & Milne (2000) discuss the Structured Interview for Renal Transplantation (SIRT) as another assessment option to use for clinical interviews. The SIRT was developed as a tool to guide clinicians through the interview process. It provides a comprehensive structure, but at the same time allows for flexibility. It is unique because it prompts the interviewer to obtain necessary information that might otherwise be overlooked. Specifically, it highlights areas that are exclusive to kidney transplantation. Furthermore, it is time-efficient and can be utilized as a training instrument for clinicians. US kidney transplant programs are the most lenient regarding specific criteria for recipients and donors. For example, mental retardation was considered irrelevant by almost half of the programs surveyed by Levenson and Olbrisch in 1993. Additionally, although current drinking and addictive drug use was a concern for the majority of the kidney transplant centers, most viewed smoking as irrelevant. Postoperative psychiatric disorders were common among patients undergoing transplant surgery and, while less common today, they still
Kidney Transplants 12 influence the selection process because pre-transplant psychopathology is a predictor for post-transplant psychopathology (Levenson & Olbrisch, 2000). Psychological screening of both organ transplant candidates and donors is routine at most transplant centers, however, as previously mentioned, the evaluation methods employed varies greatly between centers (Mori, Gallagher, & Milne, 2000; Olbrisch, Benedict, Ashe, & Levenson, 2002). In 1990, only seven percent indicated that they used formal psychosocial criteria for candidate selection, and utilized psychologists and psychiatrists less often than any other transplant program. (Levenson & Olbrisch, 2000). Since a supportive environment has been found to be an important factor with positive outcomes for all types of transplants, the assessment of the quality of life and the quality of the patient's support system is vital (Olbrisch, Benedict, Ashe, & Levenson, 2002). This information can be obtained through family interviews by observing family communication patterns and the overall support system. By meeting with the family, the interviewer also has an opportunity to learn family member's attitudes, reservations, and fears about the patient's transplant and his or her perceived role in the process (Olbrisch, Benedict, Ashe, & Levenson, 2002; Morris, P., St. George, B., Waring, T., & Nanra, R., 1987).
Kidney Transplants 13 Kidney Transplant Recipients Pre-Transplant Transplantation has no age limitation; however, the risks of both surgery and immunosuppression increase with age (Kasiske, 1998). Some researchers have found that transplantation of important body organs can be psychologically traumatic for the recipient (Belk, 1989). First, and foremost, the recipient fears a reduced life expectancy and is under a constant threat of death (Devins et al, 1983; Gulledge, Buszta, & Montague, 1983). Second, they may also fear being contaminated by the new organ or having the graft reject (Belk, 1989; Devins et al, 1983; Olbrisch, Benedict, Ashe, & Levenson, 2002; Simmons, Klein, & Simmons, 1987). This is an uncertainty that the recipient must live with every day. It is also not uncommon for the male recipient to be worried about becoming feminine or homosexual if he receives a kidney transplant from a female. Diabetes is now the most common cause of end-stage renal failure in the United States. Compared with other causes of renal failure, patients with diabetes experience increased morbidity and mortality (Kasiske, 1998). Special consideration should be given to these patients in order to minimize the risks of transplantation and enhance their quality of life. Patients who have experienced sudden renal failure may be particularly susceptible to developing maladaptive denial, which can result in non-compliance with treatment (Devins et al, 1983) and the most common reason for patients to
Kidney Transplants 14 refuse transplantation (Olbrisch, Benedict, Ashe, & Levenson, 2002). Since the psychological impact of chronic illness can be extremely negative for the adult transplant patient, it is no surprise that preoperative adjustment disorders with depression and anxiety are highly prevalent, with self-esteem and levels of happiness being considerably lower (Kemph, 1967; Beidel, 1987; Siegal, Calsyn, & Cuddihee, 1987; Simmons, Klein, & Simmons, 1987). Post- Transplant Often the postoperative stage is riddled with emotional ups and downs corresponding to the status of the transplanted kidney (Gulledge, Buszta, & Montague, 1983). Physical and psychological risks for kidney transplant recipients have been studied for years, showing mixed results. Several studies by Simmons, Klein, and Simmons (1987) have shown an increased sense of well being and better overall functioning of transplant recipients. However, not all studies have supported these same results. Beidel (1987) found that symptoms of depression and anxiety are commonly experienced both pre and post-transplant stage. Devins et al (1983) reported on the treatment for end-stage renal failure, stating that it may interfere with important areas of the person's life which can contribute to the overall emotional impact. Additionally, those with fewer resources and socioeconomic support do not cope as well (Simmons, Klein, &
Kidney Transplants 15 Simmons, 1987) and some recipients have expressed guilt over taking a kidney from a sibling. There is some evidence indicating that the following groups are more likely to be at risk: men compared to women, those with lower income and education, patient's whose appearance has been negatively affected by the medication, individuals with less emotional support from the family, married patients who felt rejected by their spouses prior to transplantation, and those who report difficulties with the donor at a year post-transplant (Simmons, Klein, & Simmons, 1987). Psychosocial losses. Transplantation offers a less restrictive lifestyle than dialysis and ultimately a longer and healthier life overall. However, the role of transplant patient still requires adjustments in several areas of the person's life (Fisher, 2003), especially adjusting to the rigorous medical surveillance and immunosuppressant4 medication maintenance (Olbrisch, Benedict, Ashe, & Levenson, 2002). The immunosuppressant5 medications can pose a challenge for 4 Term used to describe a number of drugs or medicines that suppress or lower the body's ability to reject a transplanted organ. Another term for these drugs is anti-rejection drugs. Examples of immunosuppressants used for kidney transplants are cyclosporine, azathioprine, prednisone and FK 506. 5 See Footnote 4
Kidney Transplants 16 the recipients due to their high costs and the numerous side effects, including mood swings, sleep disorders, negative appearance changes, gastrointestinal problems, fever, sexual dysfunction, cognitive dysfunction, decreased coordination, tremors, headaches and hallucinations (Olbrisch, Benedict, Ashe, & Levenson, 2002). Additionally, the person is at a higher risk for fungal infections, brain tumors and they are 35 times more likely than the general population to develop lymphoma (Fricchione, 1989). All of these side effects increase a patient's chances for non-compliance with the medications which has consistently been associated with graft rejection, graft loss, the need for a re-transplant and even death (Kasiske, 1998). Most research suggests that a supportive family environment protects post-surgical kidney transplant patients from potentially dysfunctional psychological consequences of their physical illness (Christensen, Turner, Slaughter & Holman, 1989). Simmons, Klein and Simmons (1987) identified some risk factors for developing post-transplant emotional or psychological problems. Included in those risks were those individuals with less emotional support from the family. Dew et al. (1998) found that preoperative history of psychiatric disorders increased recipient risk for psychiatric disorders after transplantation. He also found that poor social support and avoidance coping strategies predicted poor psychological outcome (Levenson & Olbrisch, 2000).