Solid Organ Transplant

42 Solid Organ Transplant

Michael Mccown, Dawn Freiberger, Lynne Helfand, Debra Boyer

Providing palliative care to patients pursuing an intensive, life-extending treatment such as organ transplantation may seem paradoxical. However, the presence of severe underlying disease, inadequate organ availability, and significant morbidity and mortality associated with the transplant process requires the application of palliative care concepts throughout the transplant process. By definition, the involved patient population has severe end-stage disease that carries with it significant morbidity and mortality. The disparity between the number of patients needing organs and donors is significant and leaves listed patients with unpredictable waiting times. During this period, the patient’s medical status may worsen and his or her care needs change dramatically. Therefore, transplant medicine is focused on providing life-extending treatments but must always recognize the medical realities and emotional needs of the patients and families involved.

The frequency of organ transplantation has increased dramatically over the past 30 years and has increasingly become a part of patient care. In 2008, there were 27,961 solid organ transplants in the United States, with 1,964 of these procedures occurring in patients less than 18 years old (Table 42-1). Greater experience with the surgical techniques involved with organ transplantation and improved understanding of the etiology of organ rejection will likely lead to increases in the number of patients involved with transplant medicine.

TABLE 42-1 Distribution of Pediatric Solid Organ Transplants in 2008

Organ	Number of pediatric transplants	3-Year survival rates
Kidney	773 (39%)	97%
Liver	613 (31%)	88%
Heart	365 (19%)	81%
Intestine	93 (5%)	64%
Lung	45 (2%)	60%

Data compiled from United Network for Organ Sharing 2008 and www.ustransplant.org

The specific criteria to be listed for organ transplantation will vary depending on which organ is involved, but generally patients are referred when the morbidity and mortality associated with their underlying disease is greater than that associated with transplant. Mortality rates reflect a variety of factors, including the impact of the patient’s underlying disease, the technical and medical difficulties associated with the transplant procedure, a variety of post-transplant complications and the availability of other life-extending treatments in the event of transplant failure. Morbidity rates are more difficult to quantify and the impact of transplantation on a patient’s quality of life is similarly challenging. Reported morbidity associated with transplant includes complications from the surgery, chronic organ dysfunction due to ischemic injury or rejection, and the complications associated with long-term immunosuppressive medications. Ultimately, all transplantations require a patient and family commitment to continued medical follow-up and evaluation. Transplantation should not be viewed as a complete cure of the underlying disease process, but rather a transition to a different, chronic medical condition.

Solid organ transplantation is offered in many countries, generally in the more developed and financially sound environments. Patients often have to travel great distances and even cross borders to obtain needed services. In addition, patients do come to the United States seeking organ transplantation. While this is permitted as per United Network for Organ Sharing (UNOS) there are limits as to how many international patients each program can transplant each year.

In the United States, transplant centers are not ranked, but there are national survival rates published on www.ustransplant.org. Patients and families are able to access this data to compare the outcomes of various transplant centers.

Transplant Evaluation

Transplantation is an extraordinarily stressful time from every perspective. Careful patient selection is required due to the physical demands involved with the actual procedure, the psychosocial upheaval involved throughout the process, and the extensive financial and social support required after a transplant. Transplant evaluation is a comprehensive review of the patient’s medical history, current physical condition, psychological and/or emotional status, and available resources. Evaluation is also a time when the family and patient are introduced to the entire transplant team and the process of transplantation. It is essential that the family learn about all aspects of transplantation, including anticipated time on wait lists, potential risks associated with the procedure, and what level of care and lifestyle they can expect post-transplant. The development of stable relationships with the care team during this process can have a lasting impact on patient care throughout the transplant process. At the end of the evaluation process, the patient may be actively listed for transplant, placed on a deferred status until they meet criteria, or be declined for a specific reason. Occasionally, the patient and/or family may elect to not pursue transplantation, may elect to visit other centers, or may decide to postpone becoming listed.

The medical evaluation includes an assessment of the underlying disease process for which the patient was referred, as well as a comprehensive assessment to identify any comorbid conditions that may complicate or preclude transplantation. The substantial risks involved with transplantation and the relative scarcity of available organs mandates an intensive evaluation of the patient’s current and past medical history. Each transplant team will have specific requirements for further testing, but in general patients undergo a variety of physical exams, laboratory tests, radiographic procedures, and consultations. Patients are frequently referred to a transplant program from remote locations with little or no preceding contact with the transplant center. Furthermore, this referral often comes at a time of great crisis for the family because the patient may have recently had a dramatic decline in his or her medical condition. It is not uncommon for transplant centers to repeat testing that has already been completed at the referring institution to confirm results and to evaluate for disease progression.

Each patient being referred for solid organ transplantation will be evaluated by an interdisciplinary team including social workers, financial planners, mental health professionals, and pharmacists. Social workers will assess a family’s ability to handle post transplant care and identify their practical and emotional means of support. There are numerous psychosocial stressors present throughout the transplant process, including living with chronic disease, frequent medical evaluation and treatment, the uncertainty of an organ’s availability, and the substantial requirements for ongoing care after transplantation. In addition to the impact of these stressors on the patient’s and family’s psyche, there are significant associated financial expenses involved in the process. These include the need for frequent admissions, and clinic visits and procedures that are commonly at centers remote from their home. Families may miss work or have travel and food expenses that they would not normally have. Depending on the patient’s insurance, uncovered expenses for office visits and medications can be overwhelming. A social worker will evaluate the family’s ability to cope with these stressors and to identify potential areas of concern that may impact the care of the transplanted patient. Ultimately, the social worker will assist the family in locating and developing the resources and support they will need to successfully navigate this process. A mental health professional will assess the readiness of the patient and family for transplant and evaluate the level of understanding regarding the child’s health and prognosis. There are times when a family and medical team are ready to list for transplant, but the child is not ready. In these instances, the psycho-social support team can be very helpful in navigating issues of assent in these young patients.

At the conclusion of the evaluation process, the patient’s disposition regarding transplant will be determined. Patients are formally presented to the transplant team for discussion and all factors, medical, psychosocial, financial, developmental, and family resource, are taken into consideration. Both medical and psychosocial factors will play a large role in the ultimate decision about whether to list a patient for transplantation. Prior adherence to medical regimens must also be considered. A decision to list a patient will occur when the benefits of a transplant are greater than the predicted morbidity and mortality. There are no clear criteria as to when this threshold is met and therefore listing can be a complicated decision. Importantly, the patient’s quality of life is a vital factor in deciding when to proceed with transplantation. Application of this standard must be tempered by a thorough understanding of the overall health of the patient and care must be taken to not wait too long when comorbid conditions and overall poor health may adversely affect the post-transplant prognosis.

Ethical issues arise when transplant teams are faced with a family with financial and psychosocial limitations. The team must ensure that resources are available to allow the family to overcome these obstacles so that they do not compromise the child’s care. It is well documented that proper post-transplant care is essential to allow for a good outcome. Therefore, in some instances, patients are declined for transplant due to insurmountable psychosocial limitations. On rare occasions, issues of medical foster care are raised to provide a safe environment for the child post-transplant (Table 42-2).

TABLE 42-2 Transplant Team Members

Transplant team member	Role
Surgeon	Performs transplant surgery
Physician	Provides medical care both pre- and post-transplant
Coordinator	Responsible for pre- and post-transplant care from a nursing perspective, coordination of care, evaluations and patient and/or family education
Social worker	Provides assessment and care around psychosocial needs of family during all phases of transplant process
Psychologist	Performs pre-transplant evaluation to identify any contraindications to transplant. Identifies need for continued therapy pre- and post-transplant

Transplant Preparations

Once the determination has been made to list a patient for transplantation, he or she is placed on the national wait list, thus beginning a new period of uncertainty. The waitlist process varies by organ type, with some organs using allocation scores based on disease severity to determine the place on the list. Other organs use pure time on the list, with some preference given to children and adolescents.

Waiting for a transplant can be very stressful for the patient and family. Families are aware that in hoping for a transplant for their child, they are waiting for a tragic event to happen to another family. Understandably, this is very difficult for both older children and their families to process. It is explained that for a donor family, organ donation enables them see some benefit come from their tragic situation.

Waiting times on the list vary depending on the organ, the size of the patient, and region where the patient is listed. This could vary from a day to years. Most families carry a beeper so that the transplant center can reach them quickly when an organ becomes available. Arrangements need to be made in advance for other family responsibilities such as sibling child care, because families need to get to the transplant center in a very short amount of time once an organ is located. Not uncommonly, patients are called in for a transplant only to be sent home without the surgery when complications with the donor arise. Patients can also be listed in more than one region, which may mean double clinic visits and added travel expenses. Certainly, this compounds the time and financial investment for the family.

It can feel as if life is put on hold while a patient is listed for transplant. Because a family needs to be near the transplant center, vacations generally need to be close to home. Activities that have a high exposure to potentially sick contacts should be curtailed. The uncertainty that transplant will occur leads to an extraordinarily stressful time in many patients’ and families’ lives.

It is during this pre-transplant phase that applying palliative care can be most helpful. The patient will frequently be receiving intensive medical care to optimize his or her overall health for when the transplant occurs. These treatments will frequently occur in the face of a progressive, end-stage disease that has high morbidity and mortality without transplant. Balancing the benefits of intensive continued disease-directed therapy with an acceptable quality of life needs to be continually considered and assessed. Open and frank discussions with the patient and family regarding their views of the process, goals, and wishes should occur regularly between the patient and the transplant team. Similarly, palliative care teams can be very helpful in working with the patient’s primary physicians and the transplant teams to ensure that the goals and wishes of the family are continually respected.

It is important to acknowledge that some patients become too ill and no longer remain viable transplant candidates. Furthermore, there are also numbers of waitlist deaths each year, where the appropriate organ is not found in time to save the child. Transplant caregivers then can find themselves in the situation of concurrently managing and maintaining end-stage diseases while simultaneously navigating the dying process. This can feel contradictory to the needs of staying active on a transplant list. It is not uncommon for members of the medical teams to have differing opinions on how to handle these situations. Families are also conflicted with the need to not give up, and yet spare their child any unnecessary pain or discomfort. Discussions about whether a patient can have a DNR order in place and still be active on the transplant list are not infrequent. An example might be a patient with cystic fibrosis who faces potential intubation for progressive end-stage lung disease yet still desires to reach transplantation. In this situation, some patients and/or families elect to proceed with intubation in the hope that an organ will be located in time. Others will choose to pursue more comfort care measures at this time. The palliative care team can be instrumental in guiding the patient, family, and caregivers through these difficult decisions (Fig. 42-1).

Fig. 42-1 Drawing by a child awaiting an organ transplant at Children’s Hospital Boston.

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Tags: Textbook of Interdisciplinary Pediatric Palliative Care Expert C

Jul 11, 2016 | Posted by admin in PEDIATRICS | Comments Off

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