Education of the Donor by the ILDA (Psychosocial Aspects)

Abstract

The United Network for Organ Sharing (UNOS) has described in detail the medical knowledge that must be communicated to the living donor advocate (LDA), but the psychosocial evaluation, including the role of the independent living donor advocate (ILDA), has been less well characterized. Rodrique et al. found that despite the fact that published guidelines consistently highlight the importance of psychosocial evaluation to the overall selection process, only 74 % of the programs surveyed required this assessment, an increase over the 46 % reported by Bia et al. in 1995, but still significantly less than total compliance. The literature shows that nonacceptance of living donors for psychosocial or ILDA-related reasons ranges between 13 and 36 %. Living donor programs will benefit if these candidates can be identified early in the evaluation, before they have undergone extensive testing or met with multiple health-care providers. The thesis of this chapter is that the psychosocial evaluation, including the ILDA interview, can often uncover issues that need attention before a candidate receives approval to continue the evaluation. An initial evaluation process that includes participation by both the ILDA and the donor advocate team (DAT) offers significant benefits compared to other modes of evaluation. The training that ILDAs should receive is outlined, and examples are used throughout the chapter to illustrate ways in which the ILDA interview can succeed in the early identification of donors who will not proceed to donation.

Appendices

Appendix 12.1

Questions to Ask Yourself as You Consider Living Donation

We have developed questions for you to ask yourself as you consider living donation. If you want to discuss any of these questions with your Independent Donor Advocates or other members of the Donor Advocate Team, please call:

• Living Donor Coordinator— < name↔>↔<↔telephone number >↔

• Living Donor Clinical Social Worker—<name><telephone number>

• Chair, Independent Donor Advocate Team—<name>↔<↔telephone number>

Motivation

• Have I been totally honest with myself about why I want to donate part of my body to the recipient?

• Am I expecting anything in return for my donation? (e.g., gratitude? publicity? other kinds of attention? a better relationship with the recipient?) How will I feel if what I want to happen, does not?

Potential Pain and Discomfort

• Do I feel adequately prepared to deal with the pain and discomfort associated with this surgery?

• Will I be able to communicate my needs—both physical and emotional—to hospital staff and/or my family?

• Can I manage the recovery period without running into problems (e.g., boredom, anxiety, and nervousness)?

Financial Concerns

• Am I prepared financially for being out of work for months to a year?

• At what point will I become anxious about my lack of income?

• Do I have an adequate backup plan in case I have to be out of work longer than I expected?

Postdonation Concerns

• Do I have expectations about what this experience will do for me? Are they realistic?

• Have I thought about how I will feel if the recipient fails “to take care” of the kidney (portion of liver) I donated?

• Have I thought about how I will feel if the recipient has serious complications or does not survive the transplantation?

• Is my family/personal/professional life relatively stable and secure?

• If not, are there things that I can do now to improve the situation?

• Is there anything I can do now that will improve my recovery (e.g., lose weight, exercise more, and stop smoking)?

• Has anyone among my close friends and family shown disapproval or criticized me for wanting to make this donation?

• Will I be able to handle these reactions when I am feeling weak and/or emotionally fragile?

Family Concerns

• Have I spoken to my family about how they will cope if I should have serious, unexpected complications?

• Do I have a plan in place for my children and/or other dependents if I should have an unexpected outcome?

• Does my Health Care Proxy Agent know my treatment preferences if my condition should deteriorate so that I need advanced medical technology to survive?

• Does my family know who my Health Care Proxy Agent is?

• Do they understand that I have chosen that person to make medical decisions for me if I should become unable to communicate with the medical team?

Instructions for the ILDA: How to Introduce These Questions

You can introduce these questions at any point in the interview, but be aware that many people will begin reading them as soon as they receive them. If that happens, explain that these questions are theirs to take home and to use as they continue to gather information and consider donation.

One opportunity to introduce this list into the discussion is after you have asked the donor if s/he has any questions. Often donors will indicate that they are pretty overwhelmed with all of the information they have received, and will probably have questions later, after they have had time to think about their decision. Remind them that: (1) they are welcome to call any member of the donor advocate team (DAT), (2) you definitely want to help them come to an informed decision, and (3) the DAT developed this list of questions based on our experience with many potential donors. Offer to speak with any family member who may be especially uneasy about the potential donation. The most important thing is to reassure them that you are available to them as they come to a decision, to help in any way possible.

Note In Massachusetts, the Health Care Proxy is the only legally valid form of advance directives. ILDAs from other states may inquire about the person's Living Will (or other form of advance directive accepted by in which they practice.

Appendix 12.2

Living Kidney Donor Evaluation Independent Donor Advocate Sign-Off

Appendix 12.3

Donor Advocate Team Report

Appendix 12.4

Contents of ILDA Training Manual

Appendix 12.5

Medical Ethics Pretest

This pretest will not be “graded”: it is provided as a tool for you to assess your comprehension and retention of the material in this training booklet. You will have an opportunity to complete a “post-test” after you have completed this section.

• 1. Give an example that illustrates the difference between an intrinsic value and an instrumental value. Why is this distinction important in assessing potential living donors?

• 2. In response to the shortage of dialysis machines in the 1960s, Congress decided to underwrite the costs of care for all patients with end-stage kidney disease. This decision is an example of:

  • A. Micro-allocation

  • B. Macro-allocation

  • C. Formal principle of justice

  • D. Material principle of justice

• 3. The requirement of obtaining informed consent for evaluation as a Living Donor is based primarily on which principle?

  • A. Beneficence

  • B. Justice

  • C. Nonmaleficence

  • D. Autonomy

  • E. Preservation of Life

• 4. The potential donor’s right to information about the risks and benefits of Living Donation creates a ___________ duty for the provider. In other words, the provider is required to _____________________________________________________________________

  • A. Positive

  • B. Absolute

  • C. Negative

  • D. Conditional

• 5. That physicians can overrule the patient’s desire to donate a kidney because of a higher risk of developing diabetes at some point in the future is an example of:

  • A. Nonmaleficence

  • B. Paternalism

  • C. Negative duty

  • D. Beneficence

• 6. The current model of organ donation in the US is an example of:

  • A. An “opt-in” system

  • B. An “opt-out” system

  • C. A system that privileges justice over autonomy (i.e., places a higher value on justice)

  • D. A system that values the public’s best interest over the individual’s best interests.

• 7. In Massachusetts, the standard of disclosure used to measure the validity of informed consent is:

  • A. The Professional Community standard

  • B. The Subjective Person standard

  • C. The Autonomy standard

  • D. The Reasonable Person standard

• 8. True False Only the courts can determine whether a person is competent or incompetent.

• 9. As an ILDA, you will be assessing the potential donor’s decision-making capacity. What will you be looking for?

• 10. Describe what kind of duty is associated with the right to life (i.e., is it positive or negative, in rem or in personam). How does that characterization affect organ transplantation?

Note

The next set of questions are based on cases, or composites of cases we have evaluated in our program. They are designed to give you practice with “real” situations, and to compare your answers with the original evaluation in the case.

• 11. Your patient tells you that he is receiving financial support from his father, the potential recipient, during the period that he will be out of work for the donation procedure and recovery. As the patient’s ILDA, are you concerned about this exchange of money? If so, what will you do to address your concern? If not, explain why you are not worried about the exchange of money between recipient and donor.

• 12. Your patient is a young woman who plans to donate part of her liver to her mother, who has previously had two liver transplants secondary to alcoholism. During your interview, you hear about your patient’s childhood, during which, at a very young age, she had assumed the role of parent to her younger siblings. She said her mother was seldom at home and often drunk or asleep when she was in the house. It becomes clear that your patient was the “responsible adult” in the family, and that she often took care of her mother, as well as her siblings. She has three young children of her own (aged 5, 7 and 9). Her husband is not supportive of her decision, in part because his job requires travel, and he is concerned about childcare. He also knows how many times his wife has been disappointed by her mother’s apparent failure to take responsibility for her own health. As the patient’s ILDA, what will you do?

• 13. During your interview with a young woman, you begin to notice that she is rather vague about the relationship she has with her children. As you ask more questions, she states, “I do not want to go into that,” and refuses to offer further information. Her work history is erratic, also: after a significant period of unemployment, she has just begun a new business with her boyfriend and they appear to have unrealistic expectations about quickly they will become self-supporting. The boyfriend acknowledges that sales have been “slow,” but they both believe they are “entering the ground floor of a business that will soon take off.” The patient wants to donate a kidney to her mother, who has been on dialysis for 5 years. As her ILDA, what will you do?

• 14. Your patient today is a very pleasant woman who comes forward as a potential living kidney donor for her friend. When you ask about how she came to her decision, she says, “I thought it would be nice.” She is unable to list any potential risks of kidney donation. She has a son who is 8 years old, but she said that the son’s father is very involved and would probably take care of him during her recovery period. When asked who would take care of her following her surgery, she mentioned a brother, but did not provide details (e.g., whether she would stay at his house, whether he would visit her at her house). As her ILDA, what will you do?

• 15. Your final patient for the day is a young Hispanic man who comes forward as a potential living liver donor for his brother. He is very committed to helping his brother, but is reluctant to talk about the risks of the procedure and what is involved in the procedure itself. During your interview, he tells you that his wife is absolutely opposed to the donation. They have four young children from 2 to 12 years old. As she is so opposed to donation, they have not talked about how she would cope if anything bad were to happen to him (e.g., a complication that would extend the time he is off work, or his death). He explained his reluctance to talk with her, as well as his reluctance to learn about the procedure, by saying, “The more you know, the more nervous you get.” He describes his mother, who lives in Puerto Rico, as being “kind of scared, confused, nervous” about his decision. As his ILDA, what will you do?

Answers and Discussion

• 1. Something has intrinsic value if it is valued for its own sake, as an “end-in-itself,” and not because of what it can do. On most ethical theories, human beings have intrinsic value.

  Something has instrumental value if it is valued because it can be used as a “means to an end.” It has no independent value apart from its use. If my goal is to hang a picture on the wall, a hammer has instrumental value for me: It allows me to achieve the end I desire. According to deontological ethicists like Immanuel Kant, it is immoral to treat a human being merely as a means to an end (i.e., to treat them as if they only have instrumental value).

• 2. B. M acro-allocation

• 3. D. Principle of Autonomy

• 4. A. Positive duty

  The provider is required to give the potential donor information that will enable to the donor to make an informed decision about living organ donation . The provider must also assess whether the donor has the capacity to make an informed choice and must take appropriate steps to ensure that the potential donor understands the information given (by using language appropriate to the person’s educational level, providing a language interpreter for potential donors with limited English proficiency, etc.). Because fulfilling this duty requires that these actions be performed, it is a positive duty. [A negative duty would be that which required the provider to not perform a particular action.]

• 5. B. P aternalism

Note

If you answered “A” or “D,” you are partially correct: certainly, these Hippocratic values are in evidence. However, in this case, physicians are (1) ignoring the potential donor’s autonomy and (2) justifying that position by appealing to what is in the patient’s best interests. Those two conditions are the definition of “paternalism.”

• 6. A. An “opt-in” system

• 7. D. The Reasonable Person standard

• 8. True

  Only courts can adjudicate ‘competency.’ Medical providers use the concept of ‘decision-making capacity’ to refer to the abilities that must be demonstrated before the courts will deem a person to be competent. If medical providers believe that the patient lacks capacity, s/he may ask Legal Counsel to petition the courts for a competency hearing and possible appointment of a guardian.

• 9. The four functional abilities required for valid decision-making capacity are:

  • 1. Ability to express a choice,

  • 2. Ability to understand relevant information,

  • 3. Ability to appreciate the situation and its consequences and

  • 4. Ability to rationally manipulate information.

• 10. The right to life is a negative, in rem right. It is negative, because it imposes a duty to not interfere with the person’s life—e.g., to not kill that person. [If it were positive, it would impose a duty to do everything necessary to ensure that the person lives]. It is in rem because it applies to “the whole world” [everyone who belongs to the “universe of discourse”—in this case, everyone who is bound by American law].

  The connection with transplantation can be seen by asking, “What if we did believe that the right to life was a positive, in rem right?” In that case, we would have an affirmative duty (a duty to do) whatever it takes to keep a person alive. Minimally, it means we would probably have an “opt-out” system of distribution to ease the increasing discrepancy between supply and demand for transplantable organs.

• 11. It is illegal to exchange organs for money in the US: in essence, to set a price on the value of a transplantable kidney or lobe of a liver. In addition, if the donor accepts money in exchange for his/her organ, questions can be raised about whether the decision to donate is voluntary, or whether the presence of money might lead a donor to make a decision that is not in his/her best interests.

  However, families regularly help their adult children through financial difficulties. The judgment you must make is very subtle: is the potential donor receiving what he might receive anyway, absent the donation? Or, does the amount of money exceed what would ordinarily be given by a father to his son? We are looking for the fine line between “supporting” his son during the donation/recovery period, versus “paying” his son for the donated organ.

Outcome

Donor received approval to move to Phase II of the evaluation.

• 12. The characteristics common to children who have been “parentified” have been well described in the literature. While our respect for patient autonomy means we will accept her decision, it is important for this patient to reflect on her motivation for donation. Is she continuing her pattern of “taking care of everyone,” including the mother who did not take care of her?

  One approach is to ask her, “If a deceased donor liver became available, how would you feel?” When the patient in the case was asked this question, she experienced how overwhelming her feelings of relief were. She began to consider the possibility that she did feel trapped by her mother’s need, and that she really did not want to make the sacrifice that this donation would represent in her life. She acknowledged that her children were too young to understand the recovery process (her possible fatigue and limitations) and would be devastated if anything bad were to happen to her. Finally, the lack of support from her husband is a significant red flag. Living liver donation is an intense experience with an extended recovery time. Donors need support, nurturing, and assistance, and it is an open question whether this patient has adequate support for donating part of her liver.

Outcome

Donor received approval to move to Phase II of the evaluation but has suspended the evaluation process to reconsider her decision.

• 13. It is not promising when a relationship with a potential donor begins with deception and/or secrecy. In this case, the potential donor had lost her house, her job, her marriage, and custody of her children because of her drug addiction, a situation that became clear during the donor advocate team (DAT) meeting. In “real time,” the ILDA might point out that the uncertainty in this donor’s life—whether and when her children might return, how the new business will fare—are challenging enough without adding the prospects of living kidney donation.

Note

The ILDA interviewing this potential donor did not have information about her past. However, when the DAT met to discuss potential donors, the Donor Coordinator had gathered this information during her screening discussion with the potential donor. Even without that information, the ILDA believed that the donor’s current circumstances were tenuous enough, along with her refusal to talk about her children, to suggest a postponement of the donation decision. The fact that her mother has been on dialysis for 5 years raises the question, “Why now?”

Outcome

Donor did not receive approval to proceed to Phase II of the evaluation.

• 14. At this point, the patient does not appear to be a serious candidate for kidney donation. Before she is approved as a potential donor, she needs to be able to demonstrate that she understands (1) the risks of living kidney donation, and that she has thought about (2) what this donation means as far as its effects on her life. In addition, she needs to develop an adequate plan for her postoperative care (e.g., where she will stay, who will take care of her, whether her son will be with his father).The ILDA wrote, “If she shows herself to be committed to the possibility of kidney donation, I would approve her as a potential living donor, assuming that the above conditions have been satisfied.”

Outcome

The DAT documented the conditions that must be met before the patient can receive approval to proceed to Phase II of the evaluation process.

• 15. One of the most important roles an ILDA has is to make sure that the potential donor is adequately informed about living liver donation, and also that he/she has a support system that will help him/her through a physically and emotionally demanding medical procedure. This patient met neither of those conditions at the time of his evaluation. The ILDA for this patient wrote, “My impression is that in his desire to help his brother, the donor has not yet carefully considered the implications of his decision, nor has he had the kind of conversation with his wife that I believe is required. Especially since he is the father of four young children, more planning and more preparation needs to occur before he is ready for surgery. I would also recommend a meeting between the donor, his wife, the transplant surgeon and an ILDA, for the purposes of (1) determining how informed the wife is about living liver donation, and (2) assessing the strength of her opposition, as well as the reasons behind it. Approval to advance to Phase II will depend on the completion of these requirements.”

Outcome

The meeting between the surgeon, the ILDA, and the couple occurred with the help of a Spanish-language interpreter (the wife had limited English proficiency). The donor was given approval to proceed to Phase II of the evaluation, despite the fact that his wife never wavered in her opposition. However, during the 2-week reflection period following acceptance as a living liver donor, the donor decided to withdraw from the program.