Live Organ Donor Journey
There are several types of living organ donation, which can broadly be put into the categories of directed and non-directed living organ donation. The formal process for approval for both directed and non-directed are generally the same. However, whether a living donation is directed or non-directed does highly affect the individual decision-making process. Please read on for a full breakdown of our findings below.
DIRECTED VS. NON-DIRECTED
- Approximately four of every ten transplants are from living donors.
- There are a limited number of organs and tissues that can be donated by a living donor. These include: a kidney, one lobe of the liver and a lung/part of the lung, as well as tissue donations after specific surgeries or occurrences, such as bone from a knee or hip replacement, or Amnion after childbirth.
- According to Donate Life America, approximately 113,000 people need organ transplants. 82% of those need kidney transplants, making it the most common type of living donor transplant. 13% need a liver.
- Of those living donors, there are two types of transplants: directed and non-directed.
- Directed living organ donations are intended for a specific individual. Commonly, a directed living organ donor may be donating to a close familial and/or emotional tie, such as a child, parent, life partner, or close friend.
- There is also a type of directed living organ donation called "paired donation." In this situation, Person A may wish to donate to Person B, but for biological reasons, Person A is not a viable candidate for Person B's transplant. Likewise, Person C wishes to donate to Person D, but they also do not match. However, Person C is a match for Person B, and Person A is a match for Person D. In this situation, the donors "switch" and both people needing transplants receive one from the biologically compatible donor.
- Non-directed anonymous donation, sometimes known as "community" or "Samaritan" donations, are organ donations from one person to a stranger. The two may choose not to meet.
- Of living kidney organ donors in 2014, just 3.32% were non-directed donations. Between 2002 and 2015, just 2% of living kidney transplants were from non directed donors.
- The percentage of non-directed donors for liver transplants between 2002 and 2015 was 1.1%.
- The numbers of non-directed living donors for other procedures, such as lung, pancreas, and intestine between 2002 and 2015 were in the single digits. For example, just one non-directed lung donation was conducted during that time period.
- The process for determining suitability is largely the same for all types of living organ donations, including both directed and non-directed.
- The biological suitability of the person intending to donate must be ascertained. Biological suitability includes, but is not limited to, blood type, tissue type, body size and relative health and preexisting conditions.
- The suitability of a donation also depends on the health of the person that the organ with be donated to, such as if they are currently experiencing infection or other complications that would make them a high risk candidate for surgery.
- The living donor must go through a preliminary series of medical examinations to determine if they are a suitable match. This comprehensive lab testing may include such procedures as antibody and cancer screening, blood and urine tests, pap-smears, and a colonoscopy.
- If the living donor is determined to be a suitable match, then another series of medical testing begins, including but not limited to: radiological testing, electrocardiograms, and x-rays.
- After this round of testing is complete, the case is then presented to "the multi-disciplinary transplant team." This team is made up of a series of professionals, such as "surgeons, nephrologists, psychologists, donor advocates, and nurse coordinators." They determine further suitability, including determination that the living donor is not being coerced by any party into the donation, and is giving informed and psychologically sound consent.
- If the surgery is ultimately approved, the donor will have a completely separate medical team that exclusively cares for the donor. The surgery is then typically scheduled within a few months of approval.
- Depending on the type of surgery, donors typically spend about two days in the hospital. There is an additional four to eight weeks recovery time.
THE INDIVIDUAL DECISION MAKING PROCESS
- Most donations are from donors who know the person receiving the organ. As such, potential donors are usually made aware of the possibility of living donation by being exposed to someone close to them that has need.
- There is little publicly available information regarding how the small percentage of people who choose anonymous non-directed donation are first exposed to the possibility of donation. Anecdotal evidence and stories suggest that these individuals who choose anonymous donation may be exposed to a non-profit endeavor, or, in the case of Katherine, meet someone who is a recipient of an organ donation and be moved to explore further.
- In directed living donations, the benefits of organ donation are clearer than that of non-directed donation. The donor likely has close emotional ties to the recipient, and thus would receive a psychological benefit from helping the recipient, as well as the ability to prolong the recipient's life and thus the donor's time with that person. Donating might also relieve care-taking or financial burdens on the donor.
- Anonymous, non-directed donors don't receive the same immediate tangible benefits that directed donors often do. "Non-directed donors initially receive only an indirect benefit from their donation, being self-generated psychological-emotional benefits of helping an unknown person."
- The "stages" of making a decision, outside of the medical decision-making process, for potential donating individuals and their families has limited publicly available information.
- Logically, one assumes that any individual considering live donation would weigh the benefits (helping a loved one, fulfilling a perceived religious and moral obligation to help others, etc) against the potential and real downsides of donating an organ. For example, the financial feasibility of taking time off work or being unable to care for family, as well as the potential complications of major surgery, which include pain, infection, and in rare instances, death.
- Of one study conducted in 2014, researchers found: "Two themes emerged: the decision-making process and dilemmas in decision-making. The study identifies that the decision about donation was made in relation to one's own life, family situation and in relation to the recipient-considerations that demonstrate that a range of dilemmas can occur during the decision-making process. The desire to help was prominent and was of significance in decision-making."
- There is not a lot of publicly available information regarding the specifics of how potential donors "talk" with their families about the potentiality of donating an organ. Ultimately, the decision to make the donation must be the individual's own, and it is the ethical and actual duty of the medical professionals involved in the process to make sure there is no outside coercion.
A BRIEF NOTE ON METHODOLOGY
There was very little public information regarding how potential donors speak with family members about organ donation. This is likely because the individual consideration of organ donation is like any other big, life-altering decision, and naturally lends itself to discussion by all parties who will be affected, including immediate family members of the potential donor. However, although it is logically a good idea to talk with others about the decision, there is no legal or medical obligation to involve anyone in the decision-making process besides the required medical professionals. Nevertheless, we searched for this information directly in government and non-profit websites, as well medical journals and trusted media sites. We then directed our research towards anecdotal stories of decision-making regarding organ donation, where we were able to find qualitative information that has been included above.