Organ donation is always a debated topic. Have you cared for an organ recipient or donor? I have taken care of an organ donor who did not even know the person that he was donating his kidney to! There are many people willing to donate, so why are people still dying on the donor list?
Written by Yvette Brazier
Published: Thursday 10 March 2016
In 1954, surgeons performed the first ever successful kidney transplant - between identical twins - at Boston's Brigham and Women's Hospital in Massachusetts. Since then, transplants have become accepted medical practice for end-stage organ failure, saving or extending the lives of hundreds of thousands of people.
The community is keen to donate organs, but demand exceeds supply.
Progress in the field of transplantation continues apace. From infants to the elderly, from heart valves to faces, donors and surgeons are transforming lives.
Just last month, the Johns Hopkins University School of Medicine in Baltimore, MD, announced that the first organ transplants from HIV-positive donors to HIV-positive recipients would begin soon, following a change in the law that was instigated by the University's associate professor of surgery Dr. Dorry Segev.
There is even talk of a future head transplant, as previously reported by Medical News Today.
From 1988-2015, 653,108 transplants took place in the US. Success rates continue to increase, giving recipients up to 25 years or more of quality life.
Unfortunately, there are not enough organs to meet the needs; although the community is willing, there are too few donors in a position to give.
Strong support for donation in the US
In a comparison against European rankings in 2011, the US ranked third among 13 European nations in terms of organ donation from the deceased, with 26.3 deceased donors per million population. Only the Spanish, at 34.1, and the Portuguese, at 26.7, donate more.
The 2012 National Survey of Organ Donation Attitudes and Behavior reflected "high and sustained support for the donation of organs for transplant" among US adults, with 94.9% in favor of donation.
Fast facts about organ transplants
- From 1988-2015, there were 650,351 organ transplants in the US
- There were 384,694 kidney, 139,371 liver, 8,110 pancreas, 62,267 heart, 30,822 lung and 2,644 intestine transplants
- As of January 11, 2016, 121,678 people were waiting for organs, of whom 100,791 needed a kidney.
Around 40% of Americans "strongly supported" donation in 2005, rising to 49% in 2012. The percentage who registered permission for donation on their driver's license application rose from around 51% in 2005 to 60% in 2012. Of those who had not done so, 60% were considering it. Only 1 in 3 of the "no's" were unsure about donating.
Over 96% said they would fulfill the wishes of family members to donate, and over 75% said they would donate even without knowing their relatives' wishes.
People aged 35-54 years were most likely to have discussed intentions to donate with family members, 82% of them having done so. Only 38% of people aged 66 years and above had shared their wishes, and 67% of those under 35.
The strongest supporters of organ donation tend to be women, those under 65 years and people with higher levels of education.
Nevertheless, every 10 minutes, someone joins the waiting list. Every day, 79 people receive a transplant, but at least 20 people die waiting, because of the shortage of donated organs.
The United Network for Organ Sharing (UNOS) displays an updated record of the number of people in need of organs. On March 2, 2016, that figure stood at 121,524, and it rises every day.
The John Brockington Foundation, based in San Diego, CA, was set up by football national champion John Brockington, following a kidney transplant in 2002.
The Foundation aims:
"To create a culture in which organ donation is commonplace; to provide financial and resource support for those donating, awaiting, and/or receiving organs; and to promote health education to minority communities who are disproportionately represented on the transplant waiting list."
Diane Brockington, executive director of the Foundation, told MNT that, although about half of the population is signed up to donate, only 0.1% die in circumstances that allow for recovery and transplant. In addition, procurement and surgery are not always successful, putting extra pressure on organ supply.
Meanwhile, multiple organs can be recovered from a single donor. UNOS note that one donor can save eight lives.
Types of donation
Organ donation can be either cadaveric, from a deceased donor, or living.
In the case of a deceased donor, the suitability of the organs will depend on the cause of death, medical history and speed with which they can be harvested. Success is a question of hours, to ensure that the organ is as "alive" as possible. Consent is also a factor.
A living donor makes a conscious decision to donate an organ, such as a kidney, on the basis that the remaining organ will continue to function. In the US, 45% of organs are given by living donors.
Living kidney donation, in particular, has been made easier in recent years.
Firstly, the National Kidney Registry match living donors with recipients, easing the task of finding an exact match.
Secondly, laparoscopic surgery has minimized intervention for the donor, involving just a small incision and some minor punctures. Recovery is fast and normally requires only 2 nights in the hospital. After recovery, there is no need for dietary or activity restrictions or medications. Donors can quickly return to their normal life.
Thirdly, advances in medication make transplants more likely to last, reassuring the donor that the gift will be worthwhile.
Finally, improved financial assistance means that the recipient's insurance pays for surgery costs, and the donor's transportation and lodging expenses may be covered by the Living Donor Assistance Program, according to the National Living Donor Assistance Center. A federal employee who donates is entitled to paid leave.
Why do people not donate?
A number of factors may hinder cadaveric donation. Personal or religious beliefs deter some people from registering or donating. In some cases, consent cannot be obtained in time, either because the deceased did not share their wishes with the family beforehand, or because they never got around to signing up.
For a living donor, health can be a consideration. A living donor needs better-than-average health to start with, and they may run a higher risk of disease in the long term.
A recent study from Johns Hopkins suggests there is chance of end-stage renal disease (ESRD) 3.5-5 times higher than the general population 15 years after donation. The figures were gathered in the context of developing a new tool to ensure that only donors with minimal risk are accepted.
In addition, a living donor who needs a kidney in the future will have priority. According to Brockington, an "almost immediate" transplant should ensure that the donor should be "not even close to renal failure."
Brockington explained to MNT that registration varies widely between states. Utah has an 85% consent rate, while in California and New York, 2 out of 3 eligible donors leave the Department of Motor Vehicles (DMV) without registering.
"The most common misconceptions are that they are too old, the emergency room doctors will prematurely leave off lifesaving measures to recover organs, their religion forbids it, minorities don't receive their share of the kidneys, they could not have an open casket, and somehow it will cost them money. All are false. All contribute to the daily and deadly toll of 21 people a day dying for the organs we burn or bury."
What are the major ethical considerations?
Donation cannot go ahead without consent. However, even if a person registers as a donor while alive, when they die, family members may not always agree.
Organ donation allows the deceased to give life.
The shock of losing a loved one can leave families in a poor emotional state to discuss donation. Some families feel unable to agree, even if it was the deceased's wish.
They may be unaware or surprised that the person registered, especially if their religious or cultural background would not normally condone donation. One report comments: "They find it distressing that they did not know their loved one as well as they thought."
Sometimes the next-of-kin cannot be contacted in time.
The law in the US decrees a person's legal consent to donate "irrevocable," but doctors still consult with families and respect their wishes. This avoids exposing loved ones to additional distress, but many organs are "wasted."
In the UK, 547 would-be donors' wishes were vetoed by their families between 2010-2015, which could have provided for 1,200 recipients. Health care workers say this shows a lack of respect for the wishes of the deceased.
How do we define 'deceased'?
In 2013, MNT reported that a New York woman had woken up after being declared brain dead, moments before surgeons were to remove her organs. So, how do we define "deceased," and at what moment can organ recovery begin?
According to US law, a transplant can only take place after "irreversible circulatory and respiratory cessation" or "irreversible cessation of all functions of the brain," including the brain stem.
Because organ recovery needs to happen fast, preparation has to begin before the declaration of death. This can lead to conflicts of interests between the donor and their family and the recipient, particularly if the patient's life is supported - for example, by a ventilator.
Ethics of living donation
Ethical considerations affect living donors, too, and there is a careful process of vetting to verify motivation, mental stability, economic pressure, legitimacy and risk of abuse.
Brockington told MNT that donors must be able to demonstrate understanding of what donation entails and to prove that the decision is their own. Assessors must check for signs of coercion and assess motivation. Is the person seeking approval from others? Are they driven by guilt or obsessive tendencies?
Donors must have appropriate physical, financial and emotional support for the recovery period and thereafter. Family and spousal agreement are necessary, and counseling is recommended, especially if the recipient is known to the donor, because post-operative relationship changes can put pressure on both parties.
Encouraging donation: opt-in or opt-out policy?
Governments and health authorities are keen to encourage organ donation. To maximize rates, they choose either an "opt-in" or "opt-out" policy. MNT previously compared the opt-in and opt-out systems. The US has an opt-in policy.
Fast facts about organ recipients in the US
- In 2014, 280 infants under 1 year received 261 organs from deceased and 19 from living donors
- 503 1-5-year-olds received 417 organs from deceased and 86 from living donors
- 3,148 18-34-year-olds received 2,087 organs from deceased and 1,061 from living donors.
In opt-in, everyone is invited to sign up with a national registry, supported by media and public awareness campaigns.
Opt-in ensures individual freedom of choice, but it can be wasteful if people do not get around to signing up or if they do not make their wish to donate clear.
A number of European countries have an opt-out policy, also known as "presumed consent," where everyone becomes a donor by default, unless they register an objection.
Proponents argue that most people support donation but many never formally record their wishes.
An opt-out system, they say, saves people the trouble of registering, eases the burden of decision-making on grieving families and could provide thousands of people with viable organs that otherwise remain unavailable.
However, the opt-out approach raises ethical questions about individual freedom. It could create tension between the transplant community and the general public, potentially reducing donation rates.
Even in countries with opt-out legislation, the family is normally consulted. This ensures transparency, minimizes trauma to the family, maintains good public relations and enables access to the donor's full medical history.
Comparing the two systems, Dr. Segev concludes:
"Opt-out is not the magic bullet; it will not be the magic answer we have been looking for. With opt-out the perception becomes, 'We will take your organs unless you take the time to fill out a form.' That's a dangerous perception to have. We only want to use donated organs from people who intended to donate."
Other incentives to boost donations have included payments or tax credits for donors and families, the chance to choose the recipient and "strong presumed consent," known as "routine salvaging."
Payment policies are open to abuse, leading to a black market in organs, coercion and organ trafficking.
Choosing a preferred recipient is hindered by the need for a suitable match. Routine salvaging is widely considered disrespectful of individual rights, and it could discredit the concept of donation if implemented.
Donation and the law
Organ donation enjoys strong support in the US. In 1984, Congress passed the National Organ Transplant Act to meet growing needs. The US Department of Health and Human Services (DHHS) describe organ and tissue donation and transplantation as "one of the most regulated areas of health care today."
The Organ Procurement and Transplantation Network (OPTN) maintain a national registry for organ matching. It is administered by a non-profit organization, UNOS, under contract with the Health Resources and Services Administration (HRSA) of the DHHS.
Legislation to encourage donors is regularly updated, creating not just policies but also incentives, such as the Stephanie Tubbs Jones Gift of Life National Medal, established in 2008 to honor donors and their families.
The future of transplantation
When we asked Brockington whether she thought this likely, she told us:
"Yes, we hope so and have reason to. 3D-printed organs are already a reality, and it's estimated that in 10-15 years the [number of] people a day who die for lack of a kidney will be a heartbreaking statistic from the past. The other organs may prove more of a challenge but one that will no doubt be overcome."
Meanwhile, she emphasizes the need for the community to pull together to save those on the list by registering as a donor or by becoming a living kidney donor.