Module 3 – Informing Patients & Obtaining Consent
Ethics Case 3.3
The Donation Decision
During her initial consultation, Miss René, 28, meets with Dr. Martinelli, the transplant nephrologist overseeing her brother Marcus’s case. Dr. Martinelli explains the living donor compatibility testing process and reviews Miss René’s medical history. The physical examination and preliminary bloodwork suggest that Miss René would likely be an excellent match as a kidney donor for her brother, which Dr. Martinelli notes would significantly improve Marcus’s chances of a successful transplant compared to waiting for a kidney from a deceased donor. Dr. Martinelli emphasizes the substantial benefit to Marcus, given that a living donor kidney typically functions better and lasts longer than a deceased donor kidney. He also reminds her that Marcus could receive it much sooner if it came from a living donation, given that the waitlist to receive a donor kidney currently has an average wait time of 3-5 years.
Dr. Martinelli then explains the nature of the transplant procedure, including what the remainder of the transplant donation process entails, what to expect during surgery, and the fact that most donors recover well and return to normal activities within 4-6 weeks. After discussing the potential risks associated with surgery, he emphasizes that living kidney donation is generally safe with a mortality risk of approximately 3 in 10,000 donors. However, he does note that there can be some long-term side effects associated with donation, such as a slightly elevated risk of developing kidney disease herself later in life, particularly if she develops diabetes, hypertension, or other conditions. Additionally, some donors report persistent pain, fatigue, or psychological distress years after donation, especially in cases where the donated organ is rejected by the recipient’s body, rendering the transplant unsuccessful. And he has seen some current studies that indicate an increased risk of hypertensive disorders when living donors become pregnant. He tells Miss René that for these reasons, she does have the option to decide not to donate.
During the meeting, Miss René tells Dr. Martinelli that she has always had a good relationship with her younger brother, Marcus. However, she also admits that after she moved away to Seattle for graduate school five years ago, their relationship became distant. But then she received the urgent call last month informing her that Marcus’s lupus had affected his kidneys so significantly that a kidney transplant had now become necessary. She tells Dr. Martinelli that her mother made it clear in the phone call that the family expected her to get tested as a potential kidney donor.
During the meeting, Miss René tells Dr. Martinelli that she has always had a good relationship with her younger brother, Marcus. However, she also admits that after she moved away to Seattle for graduate school five years ago, their relationship became distant. But then she received the urgent call last month informing her that Marcus’s lupus had affected his kidneys so significantly that a kidney transplant had now become necessary. She tells Dr. Martinelli that her mother made it clear in the phone call that the family expected her to get tested as a potential kidney donor.
When Dr. Martinelli asks why she wants to donate her kidney, Miss René sighs and admits that she feels somewhat torn about the situation. She tells Dr. Martinelli that she loves her brother and wants to help him, and that no one else in her family has been a good match for her brother so far, so she feels like she owes it to him to donate if she can. However, she is also concerned because she just gave birth to her first child eight months ago and is struggling to balance graduate school while also being a new mom. She tells Dr. Martinelli “I honestly can’t imagine going through a major surgery right now with so much on my plate already, and while my body is still recovering from giving birth. We also want to have another child in the next few years, but you mentioned that donating can increase my risk of complications during pregnancy. And above all, it would devastate my husband and daughter if something went wrong during the surgery. On the other hand, I also can’t imagine facing my family and telling them that I could be the one to help Marcus but that I’m choosing to prioritize myself and my family instead.”
Dr. Martinelli notices that during the consultation, Miss René repeatedly mentions her family’s expectations rather than her own desires to donate. When asked directly if she wants to donate, Miss René responds, “Well, my family expects me to, and Marcus needs it, so of course I want to donate…” This response slightly concerns Dr. Martinelli, as transplant ethics require that donors make voluntary decisions free from coercion. However, Dr. Martinelli also recognizes that family dynamics are complex, and it can be difficult to distinguish between normal family influence and undue pressure. He wonders whether he should dig deeper into Miss René’s motivations or simply accept her stated willingness to proceed with the donation.
Notably, the transplant center has established protocols that allow potential donors to decline participation confidentially. If Miss René wishes to withdraw as a potential donor, Dr. Martinelli could tell her family that Miss René is “not a suitable match” for donation, providing Miss René with a way to decline being a donor without having to confront her family directly. However, Dr. Martinelli is unsure whether she should inform Miss René about this alternative given that she says she’s willing to donate. On one hand, it could relieve pressure and ensure Miss René’s decision is truly voluntary. On the other hand, offering this “way out” could be seen as Dr. Martinelli inserting his own judgment about what Miss René should do, and it might inadvertently suggest that he thinks Miss René shouldn’t donate.
Dr. Martinelli also considers whether he should discuss the financial implications of being a donor. While the transplant surgery itself and immediate follow-up care for Miss René would be covered by Marcus’s insurance, Miss René would be responsible for any costs related to complications that arise later, her own lost wages during recovery, and potentially higher health and life insurance premiums in the future. Some donors have reported difficulty obtaining life insurance or being charged higher rates after donation. Dr. Martinelli knows these financial considerations could be significant for someone in Miss René’s situation, but he’s uncertain whether discussing them falls within his role as a transplant nephrologist or whether this information might be seen as trying to discourage a potentially life-saving donation.
