Organ Donors - The Journey

Part
01
of two
Part
01

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.

MEDICAL PROCESS

  • 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.
Part
02
of two
Part
02

Deceased Organ Donor Journey

Death is an uncomfortable topic for many. The decision to become an organ donor is not one to be taken lightly. Registering on the State Donor Registry and making the decision clear on your driver's license are also important steps in the process. If your wishes are made clear to your loved ones before your death, the likelihood they will be carried out is greatly increased.

STAGES OF MAKING A DECISION

  • There is no decision-making process specific to organ donation; however, considerable research has been undertaken with respect to the general decision-making process. Seven key steps have been identified in this process.
  • The first step involves identifying the decision. The decision, in this instance, is whether to donate organs upon death.
  • The potential donor would then gather information regarding organ donation and the donation process. The type of information gathered is discussed in the gathering information section.
  • Next, the donor would consider the organs they wish to donate. This includes deciding whether specific organs are donated or the entire body. If the entire body is to be donated, there is a different process to be followed.
  • Although the donor, in most instances, cannot specify on the register if only specific organs are to be donated, this is still a relevant consideration. Most hospitals still seek the consent of the family before harvesting organs. By clearly making their wishes known to their family, the donor can make specific decisions regarding the organs they wish to donate.
  • The donor would then consider all the information they have gathered regarding organ donation and the different alternatives.
  • Factors that influence the decision-making process include relational ties, religious beliefs, cultural influences, family influences, body integrity, interactions with the health care system, knowledge of the organ donation process and the process of donation.
  • Once the potential donor has considered the information and the different alternatives, they would decide whether they wish to become an organ donor.
  • If they decide to become an organ donor, they would then follow the steps set out in the early stages of organ donation section.
  • No decision is ever final, and it may be possible that the feelings a person has toward organ donation change throughout their lifetime. Part of the decision-making process is reviewing the decision and ensuring it still reflects their wishes.

GATHERING INFORMATION

  • There are several ways to become informed regarding organ donation.
  • A number of organizations have web pages that discuss some common questions and concerns from potential donors.
  • Most states have a wide range of information regarding donation on their donor register pages.
  • Some of the most common questions and information sought are discussed as follows.
  • Organs that can be donated upon death include kidney, liver, heart, lungs, pancreas, and intestines.
  • From 2014, hands and faces have been able to be donated. Corneas and eyes can also be donated.
  • There are a range of body tissues that can also be donated. These include heart valves, skin, bone, and tendons.
  • Being an organ donor does not influence the treatment undertaken by your medical team or efforts being undertaken to save your life.
  • The final decision regarding organ donation for those under the age of 18 rests with the parents or guardians. This does not prevent someone under 18 registering as an organ donor in many states.
  • No one is too old to donate their organs. Organs are assessed on an individual basis as to their viability.
  • Although all organs may not be suitable for transplant in an ill person, some may be. This assessment is made at the time of death.
  • The family of the donor is not responsible for any of the costs associated with organ donation. These costs are paid by the recipient.

EARLY STAGES OF ORGAN DONATION

  • There are three early stages of becoming an organ donor.
  • Firstly the person should register with the state donor registry. Most US states have a donor register. Details about the individual state donor registers can be found at organdonor.gov
  • Secondly, the person should designate their choice when they renew or apply for a driver's license.
  • Thirdly, the person should talk to their family about their decision to become an organ donor. Although consent is not explicitly required to remove organs if the donor has registered, hospitals still often seek the consent of family members.

TALKING TO FAMILY

  • Talking about death makes most people uncomfortable. Organ donors need to talk to their families about their wishes because someday they may be asked to make that decision, and it is a lot easier if they already know the answer.
  • Often the discussion encourages other family members to consider what their wishes are as well.
  • The case study of Brandon Spight is a good example. His mother brought the subject up over dinner because she wanted her family to know she wanted to donate.
  • Brandon's father was against it, but Brandon supported it. Three years later, age 17, Brandon suffered a brain bleed that ended his life, but as a result of their earlier discussion his family knew exactly what he wanted, and his organs saved five lives.
  • The Gift of Life Michigan suggests the following process when discussing this topic with family members.
  • Start by discussing why you want to talk about the topic or how you became aware of it. Talk about what you have learned and how you feel about it.
  • Any concerns must be acknowledged as legitimate and not just dismissed.
  • You also need to be clear in communicating your wishes and the reasons for your decision.
  • When the time comes, most hospitals will still seek consent from your family, so they must know what you want.
  • Many people designate someone to be responsible for decisions regarding their health care in the event they are unable to communicate their wishes. This person must be advised of the donors' wishes in respect of organ donation.

THE PROCESS OF ORGAN DONATION

  • When a donor suffers a potentially life threatening event life saving interventions are undertaken by paramedics, EMTs and hospital physicians. Interventions are never withheld because someone is an organ donor.
  • Life saving interventions may include ventilation, IV fluids, blood transfusions, pharmaceutical interventions and CPR.
  • When the person is stable, they are usually transferred to an ICU where further medical investigations are undertaken. These medical investigations include tests regarding brain function and organ damage.
  • Life support is maintained throughout these tests. The primary test determines whether brain death has occurred.
  • If it is determined that brain death has occurred the person will be kept alive artificially while someone from the organ procurement team attends and determines if and what organs are viable for donation.
  • The organ donation process is then discussed with the family of the deceased and their consent is sought, although it is not specifically required.
  • Relevant information regarding the donor is then placed in the national transplant system and candidates to receive the organs identified.
  • Once the necessary arrangements have been made the donor is taken to the operating room and the organs harvested for transplant.
  • The body is then released to the deceased family for funeral services. The procedure is not disfiguring so an open casket is possible in most instances.
  • The family is notified over the next few weeks regarding what organs were transplanted however the recipients details are kept confidential.

RESEARCH STRATEGY

We extensively searched a range of medical publications and articles regarding organ donation. We also reviewed various state registry web pages and the national organ donor web page. These resources enabled us to identify early stages of organ donation, and the location and resources available to someone who wishes to become informed as to the process. There was no specific information available regarding the decision-making process of someone who is considering becoming an organ donor. Given this, we reviewed a range of scholarly articles regarding how decisions are made in general. We then applied the information available from the aforementioned sources to determine the decision-making process specific to organ donation. We have also included answers to some of the most common questions asked during the decision-making process. There was little detailed information regarding the process followed when discussing organ donation with family members. The Legacy of Life provided a case study of this process and a possible process to follow when initiating this discussion which offers a valuable overview. Although the research criteria did not specifically request information regarding the final organ donation process, we have included it for completeness as it is a key part of the deceased organ donor journey.
Sources
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