Discussing Living Donation with Family and Friends
It is very important for patients to keep an open mind about living donor kidney transplantation. Living donor kidney transplantation is the preferred treatment option for most patients because it offers the best chance for a high quality kidney in the shortest possible waiting time.
Some patients have family members or friends who offer to donate a kidney, even when they have not been asked - they just want to help. Some patients may not have had others volunteer to donate a kidney. But that doesn't necessarily mean that they do not want to - they just might not know how they can help.
We advise all of our kidney transplant patients to talk to family members, friends, co-workers, and others about their need for kidney transplantation, and the benefits of getting a kidney from a living donor. We know that it can be very difficult to ask someone to consider donating a kidney. Our transplant psychologist can help you think through this difficult process and provide you with a strategy for talking to others about donation.
There are lots of reasons why you might be hesitant to ask others about kidney donation. Some concerns and questions that patients have include:
- Why should I rely on others to help me with my illness when I have managed things independently all of my life?
- I don't want to burden others. Wouldn't donation affect family life, work, or leisure activities?
- What if donating a kidney causes health problems?
- What if those who volunteered to donate a kidney weren't really serious?
- What if the donated kidney doesn't work?
- How will my relationship with the donor change after surgery?
- How could I possibly thank someone enough for donating a kidney to me?
These are important questions and they deserve careful consideration. We will work with you to be sure that you have a complete and accurate understanding of how living donors are evaluated and selected. This might ease some of your concern. Research shows that almost all donors are happy they decided to donate and say they would make the same decision over again. Many people say that donating a kidney to someone they love is an important highlight in their life.
How Do You Ask?
So how can you ask someone to consider donating a kidney to you? Again, our team will work with you to develop a strategy that meets your needs. But in general, you might consider the following approaches that some of our patients have found useful:
- Bring family members and friends together for a single meeting at your home. At this meeting, tell everyone about your kidney disease, why the doctors feel that a kidney transplant is your best option, and why your doctors are recommending a living donor kidney transplant. The advantage of this approach is that you can talk to everyone at the same time. You may like this idea, but find the group format too difficult or intimidating. Here at BIDMC, we offer our transplant patients the opportunity to have one of our health educators go to your home and meet with your family members and friends. Our transplant psychologist has done this quite a bit and most families find this to be very helpful.
- Ask family members, friends, or others one at a time - individually - to consider donating a kidney. For instance, you might say:
- "I have kidney disease and my doctors have told me that I need a kidney transplant to live longer and to improve my quality of life. The doctors said that a kidney from a living person is better than one from someone who has died. I know that this is a very difficult thing to ask, but would you consider donating a kidney to me? I don't need an answer right now, but it would be great if you would consider it. No matter what you decide, it's important for you to know that our relationship won't change at all, no matter what you decide."
- Give them a brochure that we will provide to you. The brochure has a lot of information about being a living donor, how the evaluation is done, and what past living donors have said about the experience
- Write an email or letter and send it to all family members and friends. Again, you can describe your kidney disease and need for a transplant, while also mentioning that you would benefit from a living kidney donor. Our social worker or psychologist can help you with this letter, if it is something you want to try.
- Find an "ambassador" who is willing to talk to others for you. This "ambassador" can be a family member, friend, pastor or other important person in your life.
Let Us Evaluate Donor Eligibility
One thing that we emphasize to our patients is that you should not decide who is medically eligible to be a living donor - that is our job. Sometimes patients will not talk to a family member because they believe s/he would not be eligible to donate. Sometimes our patients are right, and sometimes they are not. For example, one of our patients did not ask his sister to be a donor because he thought she was too old (60 yrs old). But when we told him that there was no upper age limit to be a living donor, he asked his sister and she agreed to be evaluated. He now has one of his sister's kidney and they are both very happy about it! Remember, we carefully evaluate the potential donor's health history and risk for certain types of health problems in the future. We have a team of professionals - separate from yours - who evaluates each potential living donor and we consider their health above all else during the evaluation.
What happens after you have tried one (or more) of the strategies mentioned? Ask those who have expressed an interest to telephone our living donor nurse coordinator at 617-632-9700, and she will take it from there. She will do a brief telephone interview and answer whatever questions people may have about donation. If they are eligible to be evaluated further and they are still interested in donating, we will schedule an evaluation. We do a thorough evaluation to be sure the donor really wants to donate, is in good health and completely understands the donation process.
Careful Consideration Takes Time
You may be thinking, "It's been a month since I talked to family members or friends, and I haven't heard back from anyone?" This is common. Being evaluated as a possible living donor is a decision that should be made after careful consideration - and after talking with loved ones about it. After a few weeks or so, we recommend that you ask the people you spoke to whether they have considered being a living donor. If they say, "No, I haven't really considered it yet," or "I just can't do it," thank them for their thoughtful consideration and then move on to others. It is very important to remember that there are many reasons why someone might not want to be a living donor. It does not mean that they do not care for you or do not love you. Reassure them that you do not think of them any differently and that your relationship is still very important to you. They will feel thankful that you did not pressure them to donate.
Here to Help
Our behavioral health team can help you and your loved ones explore feelings about living donation. Our expertise in this area is especially helpful in supporting minority patients who need organ transplants and would benefit greatly from living donors. Please call us with any questions or concerns.