The Decision To Donate

Fifty plus percent of the people that start the live donor workup get turned down because we find something that’s wrong,” says Dr. Charles Shield of St. Francis Hospital, Kansas.**

Making the choice to be a Living Donor is not a simple one, nor should it be. Living donation involves a major surgery to remove a crucial organ; it is a procedure that provides the kidney or liver donor with no benefit and leaves her/him in a permanent compromised physical state.

Most transplant recipients are the living donors’ loved ones, making the decision very emotional. Many people feel a ‘duty’ or ‘obligation’ to care for or look after their family member, which makes prioritizing one’s own needs and wants very difficult.

Now more than ever, unrelated living donors (sometimes referred to as Altruistic Donors) are responding to solicitations from would-be recipients in need of a kidney or liver transplant. Billboards, newspapers and the internet offer would-be recipients opportunities to ‘plead their case’ to the public in hopes a living donor will present her/himself.  Often referred to as the ‘rule of rescue’, prospective living donors can respond to the impulse to save an identified life (a trapped miner, child in a burning building) despite risk to oneself. This phenomena, especially combined with a religious belief, can be so powerful to cause an individual to engage in incredibly self-destructive behavior.

Has the recipient been told they can only have a living donor transplant, or that a living donor transplant is their “best chance at life”?

The deceased donor wait list must balance those in the greatest medical need with those that have the best chance of regaining their health post-transplant for the longest time.

If a would-be recipient is told they ‘must’ have an LD, it can mean the recipient is not a good candidate for a deceased donor transplant. The transplant recipient might be either not sick enough to be listed*, or is too sick, or has a diagnosis with a bad prognosis (not expected to survive the procedure, or to have improved health, or to live very long after the transplant). 

The protections afforded deceased donor organs are not extended to living donors. The availability of a living donor allows the transplant center to hide all the details of the would-be recipient’s condition from the OPO (organ procurement organization), other transplant centers and even OPTN/UNOS.

Because of the Medicare benefit for end-stage renal disease, hospitals are guaranteed reimbursement for transplant services. So – consider if you want to risk yourself in a situation that is viewed as too detrimental for a deceased donor kidney.

*See Living Liver Donors page for more on MELD

– Are you feeling pressured?  

In one study, 13% of living donors experienced emotional pressure to donate the kidney: from the recipient, other family members and from the medical team.(4)

A 2010 study at U of Minnesota revealed that 40% of their living donors reported feeling some pressure to donate. Those who ranked family expectations as their first or second most important reason to donate were more likely to feel pressure, and those living donors related to their recipients were also more likely to report feeling pressure. (155)

– Did the recipient ask you to donate?  

Transplant programs are offering ‘educational’ workshops to teach would-be transplant recipients how to talk to their friends and family about living kidney or liver donation. There seems to be a lack of acknowledgment on the transplant center’s part of the sometimes complex dynamics that can exist in families, where coercion or pressure becomes automatic the moment the question is posed.

– Do you feel you are the only person who can save the would-be recipient’s life?

– Are you worried about disappointing friends or family members?  

Being a suitable living donor first depends on blood type match and HLA/antibody compatibility, and the medical evaluation reduces the pool of possible candidates even further. Sometimes all members of a family will agree to be evaluated, but only one member of a family is considered medically acceptable. This person can feel as if they have no choice but to donate, as if their autonomy has been taken away.

The psychological portion of the living donor evaluation is supposed to look for signs of ‘coercion’, but many transplant centers are rather lax on the matter, especially if the donor is a relative of the recipient. If you are having doubts of any kind, please disclose these to the social worker or living donor coordinator assigned to you by the transplant center. (If a living donor coordinator is not assigned, ask for one – it’s legally required by OPTN and CMS). They will offer no judgment and your statements will be kept confidential.

**If you do not feel comfortable discussing these issues with the transplant center’s personnel, please contact an outside advocate**

– Do you feel helpless regarding a loved one’s illness?

– Are you the caretaker and want things to get back to normal?

While many transplant recipients enjoy years of quality life after surgery, some do not. Regardless of statistics, no one can guarantee how much life a recipient will have after a transplant, or how healthy they will be.

A transplant is not a cure. Most recipients will require multiple transplants to achieve a normal lifespan. 

Meanwhile, a living donor’s lost kidney will never grow back and complete pre-op function will never be regained. In fact, in a study of 402 donors followed between 1964 and 1995, estimated GFR was reported at 72% of age-predicted value.(95)

– Are you hoping for an improved relationship with the recipient? 

In 13/20 cases, we found expectations or wishes for the future (following donation) although these wishes were as a rule not openly expressed.(166). High expectation make disappointment seem inevitable, resulting in intermittent or chronic depression or anxiety six months post-donation. (167)

– Are you afraid that if you decide not to donate people will think you’re selfish?  

You, the prospective donor, did not cause the would-be recipient’s kidney or liver failure. Therefore, you are not responsible for treating the disease.  

Relinquishing a kidney or lobe of liver is not akin to donating a pint of blood. Living organ donation does have risks and complications, both physical and psycho-social, both short and long-term. In fact, because living donors are not followed, many long-term issues are unknown.

It is imperative to remember that the decision to be a living donor doesn’t just affect you and the prospective recipient, but others in your life as well:

– Spouse/Significant Other

– Children

– Parents, Siblings

– Friends

– Employer/Boss/Co-Worker

In one study, 13% of living donors believed donation caused conflict with their spouse. One living donor believed the decision had led to divorce (4). (See Risks page for more on relationship conflict)

No one wants to dwell on adverse possibilities, especially when so much of the language surrounding living donation is about heroes, giving, generosity, angels, etc. However, living donation does have short and long-term risks to the living donor so taking the time to consider the ‘worst case scenario’ can bring some of these contradictory feelings into focus.

– How will my spouse/SO and kids be taken care of if I die or am incapacitated?

– How will bills be paid if complications arise and I’m out of work longer than I expect?

– Can I accept the lifelong higher risk of cardiac disease and kidney failure resulting from living with one kidney? (85, 95, 99)

– Can I afford the expenses of being a living donor (105 – also see Risks page)

– How will I feel and cope if the transplant isn’t successful or if the recipient falters and dies?

Expect a variety of reactions from family and friends. Some may be supportive while others may seem indifferent to your decision (or decision-making process). Others may express opposition to the idea, especially if the would-be transplant recipient is a stranger or non-relative. Understand that these reactions are a result of their love and concern for your well-being. Since living donation doesn’t occur in a bubble, and your loved ones will be affected by the consequences of your decision, their opinions and feelings are worth considering.

According to one study, 27% of prospective living donors ‘voluntarily withdrew’ from the process (75). Their reasons:

28% cited work commitments
28% had a ‘change of mind’ (often after consulting with their partners)
19% feared the risks of operation
10% were planning a pregnancy
and 15% did not wish to give a reason.

Pride, hubris, guilt and desperation are not healthy reasons for donating. Hoping to ‘get something out of it’ or ‘make up’ for a past mistake will only lead to disappointment.

The choice not to donate is NOT a death sentence for the recipient. They have other options: the national transplant list, another living donor. People live for many years on dialysis. In fact, some fare better on dialysis than with a transplant.

It’s Imperative To Take Care of Yourself First.