She looked pale and exhausted and as though she had given her appearance little or no thought before leaving home. Preoccupied, she fidgeted as she sat waiting.
He, on the other hand, seemed not only more aware of his surroundings, but more cautious of the appearance he made to others. He did not look at her, but maintained a kind of protective posture toward her.
I called her back; he came along uninvited. I took some information from him and then asked to see her alone.
I had been expecting them. The liver transplant team had already expressed their concerns to me about the implications of placing her on the list.
"Lisa" had contracted the hepatitis C that was now killing her during her previous exposure to intravenous drugs. She had been sober for about 10 years. That was when she met "Joe." Lisa explained that they had been lovers, but were now just friends.
They lived in the same home, but had separate bedrooms. Neither was seeing anyone else romantically. When asked to describe the relationship, she said, "Joe is the best thing that ever happened to me."
Lisa denied any previous psychiatric symptoms other than the drug abuse. She had not received psychiatric treatment, either for any unnamed psychiatric symptoms or for her drug problem. The team was sympathetic to her and wanted to place her on the list.
Yet, the team was very concerned about the behavior of her friend. Joe was very devoted and seemed committed to protecting Lisa. However, he had been confrontational to the point of belligerence many times and had even made threats to the liver transplant team. Joe no longer worked outside the home; instead, he arranged for the state to pay him a salary as her home health care aide. Although Lisa was very ill, she was still able to perform most tasks of daily living; many members of the transplant team questioned whether she actually needed around-the-clock health care assistance at this time.
Worst of all, Joe was known to become angry and more threatening during some of Lisa's frequent hospitalizations. On at least one occasion, he called the hospital, claimed to be her physician and ordered pain medications on her behalf.
Lisa only had a couple of family members who were still alive. When the liver transplant team contacted her family to complete an assessment of her available support systems, the family expressed their concerns about Joe, indicating that they believed he screened her friends and family and often would not allow her to have any social contact other than with him. Lisa agreed that she had no other friends, but expressed no distress at her situation.
Psychological testing was requested, specifically to clarify personality issues. Testing revealed a tendency to minimize conflict, a tendency to use somatization as a defense and dependency. The Axis II diagnosis was listed as "Deferred."
The Organ Transplant Team
Along with other specialists (including physicians, nurses and social workers) on the local transplant team, I attend weekly meetings, in which we discuss cases that are being considered as candidates for transplantation. Sometimes my input will overlap with input from a neurologist or social worker. Ultimately, however, it is the surgeon who must decide whether the person is an appropriate candidate for transplantation. Our job is to provide as much accurate and complete information as possible, so the surgeon can make an informed decision.
From a psychiatric standpoint, many of the cases are fairly simple and straightforward and usually involve patients with a history of mood disorders, anxiety disorders or substance abuse problems. My job is to assess whether their psychiatric conditions are stable and, if not, make suggestions on how to stabilize the patient so they may be placed on the waiting list.
Some cases-such as Lisa's-are not so straightforward, either because the psychiatric illness is more difficult to diagnose and/or control or because compliance is an issue. Compliance may be affected by a variety of factors. Similarly, compliance may cause problems in a variety of spheres, ranging from the obvious impact on the patient's health to more complicated issues, such as whether the patient can interact with the team in a way that is not abusive or potentially abusive.
There are other aspects that the transplant team must consider. For instance, there are the ethical and philosophical issues concerning the limited supply of organs and how to ration them to people who have a good chance of cooperating with recommended treatment for a reasonable chance of success, as opposed to taking a risk with a person who may be unlikely to adhere to the often complicated follow-up procedures.
Sometimes the patient's intelligence affects their ability to understand and follow directions, and this must be assessed. In the case of borderline IQ or even some mild mental retardation, this can be overcome by ensuring that the person has a supportive family member or friend available to help. We can also make the regimens, instructions and so forth as simple as possible and take extra time to explain everything as carefully as possible. Some programs eliminate people who do not have a reasonable chance of becoming productive individuals after transplantation.
Another compliance issue arises in cases where patients have dementia. This issue is slightly different than that of mental retardation, because the dementia, unlike mental retardation, may not be stable but may continue to progress. Dementia secondary to substance abuse is particularly a problem in liver transplant candidates.
Patients with personality disorder issues may be most difficult of all to assess. While it is easy to get a "whiff" of a possible Axis II problem in the one-time evaluations I usually have with patients, it is not so easy to confirm the presence of a significant problem that may affect compliance within a reasonable doubt. Sometimes I have time to gain other information, whether through psychological testing, by contacting other caregivers who could provide insight into the person's usual patterns of behavior and interactions, or from family members. Sometimes, there is even enough time to suggest that the person attend psychotherapy or other appropriate treatment, and, by that method, gain enough insight to improve the person's chances at post-surgical recovery.
Other times, however, the patient is too sick to allow me the luxury of time. Also, patients who know they will die without a transplant may not be completely honest, even if they have insight into their problems. Likewise, other sources of information may not be completely forthcoming if they suspect that honest information would jeopardize the patient's chances for transplant.
These impulses are understandable, both on the part of family and collaborating clinicians. It is important to remember, however, that transplantation is not a benign procedure-people do die during surgery. There are also many chances for fatal or disabling complications during the recovery period.
Even in successful transplants, the follow-up care is not easy. It complicates the person's life, as patients must return for repeated biopsies and tests, try to manage complicated immunosuppressant drugs, and so forth.
If a person is not able to establish a therapeutic alliance with their surgeon and the other team members, their chance of success is greatly reduced. If the person has no insight into their own problems, as in Lisa's case, there may be little chance that the problems will be adequately addressed either before or after transplantation. Also, problematic care people with personality issues, like Lisa, often establish social systems populated with other personality-disordered individuals who bring to the mix their own contributions of potential conflict with the treatment team.
The object of transplantation is often seen as returning an individual to a productive and independent life. Relationships established during periods of illness may be based on unequal power status between the individuals involved. In these cases, unless both parties can adapt to new circumstances, the patient may face the possibility of remaining in a dependent and limited role or losing their primary source of support. Cases in which almost every other source of support has been discontinued or alienated may present some real difficulties.
In cases like Lisa's, some issues of guilt and worthiness also may be involved; her hepatitis C is the result of drug abuse, which may complicate her ability to develop improved self-esteem and the sense of self-worth necessary to re-enter a more active life. And, of course, in a situation in which the caregiver is receiving identifiable secondary gain in the form of income for caring for the patient (such as the above case), even more exploitative possibilities, such as Munchausen's syndrome by proxy, must be considered.
At times, the meetings can be wrenching. We are all caring, compassionate health care professionals who want successful outcomes for our patients. Every attempt is made to help each patient meet the requirements for listing, especially when the patient has children.
But organs are scarce. Every patient that gets one may, in some real sense, be taking the organ from someone else who needs it just as badly. There is enormous pressure to choose candidates who have a realistic chance of success.
In addition, each transplant program must demonstrate a certain level of success to participate in organ-sharing networks and to be eligible for public funds to pay for the surgeries. Too many negative results, regardless of whether they are due to poor surgical technique, poor medical management or noncompliance, reflect badly on the program.
Also, organ transplantation is a last resort. If a patient is turned down at our facility, they may be given an option of a second opinion elsewhere, although this usually involves significant travel. We are the only organ transplantation facility in Oklahoma. It can be insurmountable for patients to mobilize the needed social, financial and other resources necessary to become a successful candidate in another state. A complicated staging program exists to help assure fairness, but legal challenges can and do occur, not to mention our ethical and moral duty to apply the rules fairly and consistently.
Moreover, physicians have the right to work with patients with whom we are able to establish a good therapeutic alliance and avoid patients who threaten violence or subject us to verbal abuse. In Lisa's case, there is also the issue of the caregiver attempting to misrepresent himself as a physician and personally direct her care while she is hospitalized. This begs the question of whether Joe is following the regimens at home and if his behavior is motivated by true compassion and concern for her (which might be amenable to intervention) or by some other more malevolent goal (i.e., maintaining Lisa in a dependent role or a desire to maintain his income as caregiver).
In my role as a consultant to the team, I sometimes feel myself being pulled in two different directions. On one hand, I am pledged to be an advocate for the patient's best interests. On the other hand, I am called in to provide accurate and (I hope) helpful information to the other members of the team. If I do not do so, then I may be letting down my colleagues and peers, which could result in loss of future consultations and income.
However, there are times when accurate information may cause the patient's request for transplantation to be denied. I usually do not see this as a conflict. After all, it is poor medical judgment to perform a surgery that places a patient at great risk for complications, especially if they also have little chance of success. But sometimes it is the only chance, and some chance may seem better than no chance at all.
The team's primary concern in Lisa's case is whether the patient and her necessary support system can cooperate in a manner that will not subject the team to abuse and that will lead the patient to a productive life after the transplant. While we can hope to somehow enlist Joe's support in a more positive manner than he has previously demonstrated, this is not a given.
The organ transplant team required that Lisa receive drug and alcohol treatment, including weekly attendance at Alcoholics Anonymous meetings. Lisa and Joe were also required to obtain auxiliary support systems. They turned to their church for help and have enlisted two ministers who are also drug and alcohol counselors, a social worker who works as a case manager for one of the Medicaid HMOs in the state, and two nurses. Although Lisa is not receiving psychotherapy, she has been prescribed an antidepressant.
Joe was very sternly warned that if he were caught in any untruths, manipulations or the like it would negatively impact Lisa's chances. He has been much more upfront since the warning.
With the aforementioned guidelines in place, Lisa was placed on the list. Unfortunately, she is now having some serious medical complications. She developed hepatorenal syndrome and will need a kidney transplant at the time of her liver transplant.
Lisa was recently admitted to the hospital with an abdominal illness, and she has been listed (at least temporarily) as "Category 7"-a hold category due to illness or other condition that is a contraindication to the transplantation surgery.
These individual struggles seem to offer a miniature window through which the whole of life can be seen, something like a Shakespearean play. Each character involved brings their own complicated motivations, inner turmoil and conflicts; the clash of these unconscious and sometimes conflicting motivations unfolds itself in ways that are often quite dramatic.