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Subscribe to RSSDespite the great demand, very few Americans donate their organs when they die. But the reason for that may not be what you’d think -- it’s your relatives.
That’s what David Shaw, honorary lecturer at the University of Aberdeen in Scotland, thinks the real problem is. In an article published Tuesday in the British Medical Journal, he writes that one of the biggest reasons more people don’t wind up donating is veto by their family.
Even when you have signed a donor card or checked off your driver’s license a family member can still object to your being an organ donor. And some do -- at least 10 percent of the time or more, says Shaw. (That number may be even higher, according to other U.S. researchers.) Shaw says doctors ought to forget cousin Fred’s second-guessing or your sister’s distaste for donation and ought to honor your written wishes and use you as a donor.
Interestingly enough, that’s actually the law in the U.S. In nearly every state, a signed driver’s license or organ donor card is fully adequate for allowing donation no matter what your brother-in-law or other family member thinks. But despite that, doctors are still swayed by the family’s wishes.
Shaw is up against some tough problems when he urges doctors to ignore family protests. Is it really realistic for organ and tissue procurement to proceed no matter how upset family members might be about it?
And even if doctors are willing to plow ahead no matter what kind of emotional chaos is occurring in the next room, which hospital wants to risk a headline that says, “Liver removed while widow wails; Doc says ‘But I had a signed driver’s license’”?
Shaw is right to urge doctors not to give up at the first sign of family discomfort. When you sign a card or your driver’s license, you should expect that you will be able to be a donor.
I would argue, however, that the problem with family objections is not fearful doctors backing down in the face of distressed or divided families. The problem is what you and I often fail to do when we sign those cards and licenses — tell others!
If you sign your driver’s license at motor vehicles it is not likely that the friendly employee you waited an hour to see is going to be there when you die. Your family and friends will be. You need to tell them while you are alive that you want to be an organ and tissue donor. That is the antidote for avoiding an outbreak of objections when your number is up and being a donor is the last way you can help those in need. If you make it clear while alive what your wishes are that is the most important step you can take to having them honored when you are not.
Arthur Caplan is the head of the Division of Medical Ethics at NYU Langone Medical Center.
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I should have stayed away from this article. I knew I wouldn't end it happily. When my 6 year old daughter was pronounced as a brain death, those organ donation people showed up in her hosptial room. I was never told she was pronounced brain dead and she didn't actually die a physical death for 2 more days. There were 2 of them in their white lab coats who walked in and I abruptly told them NO. Because the movie "Heart of a Child" starring Ann Jillian and Michelle Greene had stayed with me for my entire life, I decided I would ask them if there was possibly a child at Riley in Indianapolis who possibly needed her heart. We were at Methodist Hospital in Indianapolis. They checked on their computer and said NO. I said, is there a child in Indiana who needs her heart and they checked and said NO. I said, then the answer is NO. I went back into her room. I'll give them the 2nd time they came back into her room because stupid me showed a little interest. Again they were told NO. But, when they came back a 3rd time and said very sarcastically, "If we can't have her organs, can we at least have her tissues like heart valves, etc...I told them to get the f*ck out and don't come back. I'll never forget that obese, mouthy woman who came into my daughter's room and she's lucky I didn't knock the f*ck out of her. I am obese myself, but she was the most rude, mouthy bitch in the world.
I'm very sorry for your loss. And obviously, in your case, your 6 year old daughter was never in a position to make such a decision for herself and you were not overriding any such decision. The decision, whatever anyone may think of it, was yours.
That is a very terrible experience you had to go through and I am extremely sorry for your loss. It is people like the one you speak about which gives organ donation a bad wrap and pushes families against donation - that and poor representation in pop culture (Grey's Anatomy, etc) and poor awareness of how the organ donation process works.
That is absolutely horrible and I cannot believe anyone would act that way towards a mother who is losing her child. Sounds like a nightmare. My condolences on your loss and shame on the hospital.
The assumption in the article by the "bioethicist" is that organ transplants are "good" medicine. In actuality it is expensive and questionable medicine. Organ recipients are, with few exceptions, wealthy or have great insurance. They are not "cured", but rather exchange an acute condition for a chronic condition. They require a regimen of anti-rejection drugs and therapies.
Life is finite and all people die. It is all the more tragic when a young life is lost. MOMOF4IN, I feel for your loss.
I'll never understand why people refuse to donate (unless they hate humanity...then I can "understand" they wouldn't want to save another life). I mean, I understand it hurts to lose a loved one...but people are so irrational about it. Someone who dies doesn't need the parts anymore and it doesn't change a single thing in your life if you allow a loved one's organs to be donated (if anything you'll feel good about possibly saving another life). The loved one is still dead, organs in place or not...so I just don't get it.
Hamster1, There are many reasons why people are not altruistic. 95% of the people who are eligible to donate blood do not. Most Americans are overweight and donating one unit of blood is 650 calories. During a person's life span, there is a significant chance that they or a loved one may need a blood transfusion.
Organ transplants are far more complex, emotional, and problematic. Organs are not "parts" like car parts. There is an entire medical complex and advocacy lobby built up around organ donation. It is a profitable business. By agreeing to be an organ donor, a person is supporting a very inequitable form of medicine.
Hamster - to each their own.
Giving up a piece of one's self (literally) is a very personal issue. You may not understand but plenty of people out there do. Their body, their organs, their choice. Said choice does not have to be rational or logical.
I am very curious mom of 4; IF an organ donation would have saved your daughter's life, would you have taken it? Or would you have said f**k no! Would you have stood and screamed obscenities at those who were offering your daughter a chance at life? I don't think so.... You would have jumped at that chance to save her. So why be so aggressive about someone else trying to save their child? Try sitting on the other side of the fence. My sister in law had a transplant 9 years ago and we daily give thanks to the family who gave consent and to the donor. Because of them we have her with us still, living, loving and laughing. Not a cure? Maybe not but it is the next best thing. All those who say they would never donate should also sign a paper that says they AND their family members will also never accept a donation and that includes their kids and grandkids. You can't just decide to take when you have refused to give.
I wasn't talking about donating while you are still alive, I was talking about being an organ donor after death (and talking to families who for some reason don't want to let their loved one's organs be donated after death). When you are alive there are negatives that I understand stop people from wanting to donate and I don't blame them...after death though those organs aren't doing you any good so why not give someone else a chance? Nothing bad is going to happen to the deceased person and nothing bad is going to happen to the family of the deceased person if the deceased person's organs are donated...but a lot of good can come from it...so that's what I don't get.
Organ harvesting is big time business.
How does the written consent of the actual party not have more meaning than the relative? Stupid relatives...
Because the relatives are jumping up and down threatening to sue. The actual party, not so much.
Put a supporting clause in your Will. No money if you interfere.
This is a difficult time for families and I think article/editorial is a bit harsh and completely overlooks that. How about more counselors on hand to help people make a time-sensitive decision that is very difficult? How about asking families that refused to consent even when the deceased was willing to be donate? Maybe then we can learn what factors sway their decision and help them make it so that the wishes of their loved one can be honored and the relatives feel that they had a say. Let's use a little more critical thinking here.
I don't think you really understand the issue. Under the law, if you've signed up as a donor, your family has absolutely no legal, moral, or religious standing to stop your donation, regardless of their personal feelings regarding your choice.
In other words, if someone objects - too darn bad.
The problem is that Dr's aren't willing to risk the bad PR. Too damn bad. They need to put on their big-boy or big-girl pants and get it over with.
I understand the issue but there is a major human element to it. The family members are dealing with a loved one who is technically dead and someone is asking them if they can harvest their organs...hope you are never in that position.
Kris
And that should be the point. If the deceased signed the card then the family doesn't even need to be involved in the decision.
The death of a loved one is difficult. But the chance to save another life is important too.
Oh, and I have been in this position, three times. Once for my husband and also for each parent.
In the 22 years I have been a nurse, I have worked with patients waiting for transplants, patients who have received transplants and patients that have both became donors and those that did not. I have friends who have had transplants, friends who's children have had transplants, friends who have family currently waiting for transplants and a father who had a transplant. I have also worked in organ procurement. First and foremost, all discussions about donation should by coordinated by individuals who have been specially trained to do so. Secondly, before families are approached the organ procurement organization has already checked to see if the patient is a registered donor. This information is shared with the family. Donation is a GIFT. I always become very emotional when a family is able to see past their own pain and are able to think of others. These people are truly the most amazing people on the face of the earth. I have never met a family that regretted donation, but have met many that regretted NOT donating. They find great comfort in the fact that by saying yes that another family may not be faced with their own tragic loss. Even though my dad passed away 10 years ago, not a day goes by that I don't thank God for his donor family. They are truly heroes in my eyes and heart. Over 114,000 people are waiting for a life saving transplant. One name is added to the national waiting list every 10 minutes. An average of 18 people die each day waiting for a transplant. These numbers are completely unacceptable. Please sign your donor cards. Let your families know what it means to you to potentially save another life. DONATE LIFE!!!
No, I don't think you actually do understand the issue. There should be no human element. The choice to donate or not is not the survivors of the deceased - the law is quite clear on this point, and should a case ever make it to court (at which point it would be moot as the organs would be non-viable, and the survivors of the deceased should be made to feel even worse), I can guarantee what the court's ruling would be.
You're attempting to argue that once the deceased has passed, that their wishes should not be honored if the survivors feel differently - sorry, but that's not the way it works.
Organ donation is extremely time-sensitive. If the deceased is a donor - has signed their donor card or otherwise indicated that they wish to be a donor - then the transplant crew should proceed without asking, and regardless of the survivors wishes. Of course they should respect the deceased and the gift that they are making, but the survivors should never be allowed to interfere.
I am an organ donor. So is my SO. My children, god forbid, will be if something should ever happen to them, and I hope that when they are an adult they will make the same choice for themselves - but, it will be their choice, not mine.
I never said their wishes should not be honored and it involves humans, so there is a human element. I understand all the restriction and a need to move fast with organ donation but if it were my kid who was brain-dead on a machine, I don't know how I would feel even if they were organ donors. I am an organ donor too. Someone is asking to harvest your loved ones organs, you are not going to jump for joy.
It's a shame that an individuals last wish to help others can not be honored for fear of bad press. My husband knows where I stand on organ donation and I know what he wants. God forbid any family member should try and stand on our way.
I can't imagine any of my family refusing to let me donate. Ever since I knew what organ donation was I've been very clear. I want them to take anything and everything that is still useful (probably won't be much) and burn the rest.
My best friend wanted his body donated to science fiction.
My body is just my current costume. Once I'm dead it will just take up space. The real me will be long gone.
I can understand why a grieving family member would have trouble with the idea of organ donation. There are reasons why a family has this reaction. For organs to be viable, most of the time a person has to be brain dead and the body still has to be functioning, even if it is with assistance. Most of the time this only occurs when there has been an accident of some kind. Often the potential donor is a young person, someone who wasn't expected to die. The family is in shock and denial. It is hard to be losing a child or a young sibling or spouse and be objective and rational. It isn't as though the family has had any time to process these events. That is why doctors are often reluctant to push the issue. It seems extremely cruel to override the family when they are already suffering so much.
The sad thing is, in many cases the family will come to regret their decision. They will come to realize that organ donation might have actually helped them in their grief. But there just isn't time. The decision has to be made quickly, in the midst of grief and shock, and then the window closes and it is too late to change your mind.
The time to have the discussion with family is now. Tell them what you want. Tell them why it's important to you. Make them understand that this is your dying wish and they must honor it. It is up to the potential donor to tell the family. The doctor shouldn't have to go to the mat on this one. If the donor is serious, then he/she needs to explain to the family.
I've discussed donating organs with my parents, husband et al... but after that article a few weeks ago about black market parts, I'm not sure I want to be a part of that crap.
In the United States, it is ILLEGAL and UNETHICAL to obtain organs in such a fashion. No reputable transplant center would risk loosing their certification in using such organs.
jln, It is illegal to speed or run a stop sign, yet it happens. People break laws all the time, particularly if they think the law is wrong. There are many people who believe that organ donation is great. There are even some who would argue that a dying person's organs should be harvested even without express permission.
The assumption in the article by the "bioethicist" and many people is that organ transplantation is "good" medicine. In actuality it is expensive and questionable medicine. Organ recipients are, with few exceptions, wealthy or have great insurance. They are not "cured", but rather exchange an acute condition for a chronic condition. They require a regimen of anti-rejection drugs and therapies. In a country where many people cannot afford basic health care, the big dollar business of organ transplantation is just obscene.
Dale, my understanding is that kidney transplantation, with all the associated drugs afterward, is a much better AND CHEAPER alternative to dialysis. What would you prefer? That people with failing kidneys - even if they're completely healthy otherwise - just accumulate toxins until they die? No, neither dialysis nor transplant is a cure, but transplant can offer a decent quality of life for MANY years that a person would not otherwise have. What's truly obscene here is your attitude.
rkaralius, I agree with you that from the organ recipients perspective, life is better with a donated organ. The break even cost is arguable between a transplant and dialysis. Each year on dialysis costs about $50,000 (range $36,600 to $60,000) . The first year for a kidney transplant is easily $265,000. Each additional year is another $18,500. The break even point would be 6.8 years, if there was 100% survival. However, 40% of cadaver kidneys will fail within 6 years. This significantly raises the cost for the kidney transplant group. Unfortunately, a higher percentage of dialysis patients will die versus the transplant patients during the same time frame. It is also true that less than 10% of all patients on dialysis will ever get a donor kidney.
Better basic health care should reduce the number of people having failed kidneys in the first place. There is no reason that a person's kidneys cannot last them their entire life.
No reason? How about polycystic kidney disease? Unless by "entire life", you mean until their diseased kidneys fail? I have to question your statistics - everything I've read (and been told by transplant surgeons) gives a much better outcome than what you've stated.
According to the 2010 SRTR & OPTN annual data report, the half-life of a deceased donor kidney is 14.7 years. For a living donor kidney, it goes up to 26.6 years. Transplantation medicine has improved markedly over the past few years and advances continue to be made, especially in the areas of cadaver organ viability anti-rejection medicine. After the acute rejection phase has passed (a couple of months), the medicines are adjusted to allow immune function to return to ~90%, which is comparable to people taking immune suppressants for autoimmune diseases such as rheumatoid arthritis.
If the family member wasn't technically dead dead yet, I can understand why the family would be reluctant to let doctors harvest the organs. Hey, miracles happen and denial is easier.
But what's the point of keeping a person's body/husk/heart/liver when their soul has definitely moved on?
@Seyleigh Agreed. I don't see why you wouldn't want to give someone else the chance to live.
Donation is a con. And this so called ethicist is either an idiot or a con man
Everyone gets paid BIG bucks except the dead guy.
You want something of value from me? PAY ME FOR IT.
Shysters getting filthy rich. If you get paid for removing it, transporting it, administering it and installing it, why can't the donor get paid for his body parts? Ethics? Are you f**cking kidding me?
It's a multi billion dollar scam, scavenging the corpses of the poor to cater to the rich and elite.
The whole practice should be banned. Harrasing the families of the dead for freebies you then turn around and sell for boatloads of money?
If you want the organs pay for the funeral, otherwise hit the road.
It's always refreshing to see such altruism as you just demonstrated. I don't think anyone with any sense would want any organ you possess, as they are doubtless all infected with your dark and deeply cynical philosophy, and would most likely kill the host for non-payment.
William, I do agree that the estate of the donor should receive at least some money. A kidney transplant costs something like a quarter of a million dollars for the first 6 months, drugs and all. If the estate got just a couple of percent of that for the two kidneys, it would hardly raise the cost of kidney transplants and would be $10,000 to the family. I am against paying living donors. I question the ethics of operating on a perfectly healthy person and risking their health.
The whole donation/transplant issue reminds me of the Monty Python skit from the Meaning of Life, Can we have your liver?
Mymomdidnotraiseafool
Let me guess, you're a shill for the medical industry? These operations are cash cows for doctors and hospitals alike. In fact whole industries of overpaid fat cats have been created to administer it, yet NOTHING for the donor, whose families are facing death related experiments?
Fools come a dime a dozen but they are at least due their dime!
William, you certainly don't need to be a "shill for the medical industry" to recognize that lives can be saved by organ transplantation and be willing to contribute to that effort without needing material compensation. The idea of accepting money for a deceased loved one's body parts is abhorrent to most ethical people. Paying people for doing their jobs is expected in a society where slavery was abolished long ago, so quit bellyaching about the costs of administrating the system. If you want to piss and moan about the cost of health care in general, be my guest - but I really don't understand your antipathy regarding a procedure that actually improves the quality of life for so many people.
William -
"Fools come a dime a dozen but they are at least due their dime!"
In that case, I think we owe you about 8 cents...
William, true justice would be you needing a transplant to survive. Then I am sure you'd be groveling for one. You are truly a twisted hateful individual.
Actually William makes a good point... If I donate an organ to someone who needs it I am giving the organ for free from myself to that person. But that person is going to pay epic sums of money for that organ that I gave for free. So who is being an unethical douchebag here? It seems that everyone along the entire process gets paid, and gets paid very well EXCEPT for the donor or family of the donor. And at the end of the day the bill gets footed by the patient anyway.
I just saw on a news report that a liver transplant can cost up to $1,000,000... I have no problem donating an organ from myself to someone else (as long as I am not using it anymore anyway) but dude, seriously, that is messed up that someone is turning around and making that kind of profit off of something that I gave away for free.
Imagine if the engine died on your car and you take it to a mechanic. The mechanic charges you lets say $2,000 dollars for a new engine plus whatever it costs to install it. You then learn later that someone donated that engine to the mechanic for free... is that cool?
Dale, if you question the ethics of operating on a healthy person who has volunteered an organ - completely understanding all risks involved - in order to save the life of someone they love, then I have to question YOUR ethics. A co-worker of mine donated a portion of his liver to his young nephew a few years ago, which saved the child's life. A family friend donated a kidney to his brother 30 years ago, which allowed him 25 years he wouldn't have had. Both of these donors are perfectly healthy to this day. I agree it would be unethical to operate on a healthy person without them understanding and accepting the risks, but there are safeguards in place to ensure that doesn't happen.
rkaralius, I question the statistics promoted by the transplant industry. The mortality rate for non-donor nephrectomies (kidney removals) is 260 out of 10,000 or 2.6% (133); however, the transplant industry continues to insist the mortality rate for living kidney donors is 3/10,000 or .03%. Your examples are testimonials and may not be typical. The Organ Procurement and Transplantation Network admits that there were 44 living kidney donor deaths within twelve months of their surgery from 2000 through 2009.
Further, an article in the American Journal of Transplantation states that an estimated 3-11 % of donors encounter difficulties obtaining health insurance or face dramatically increased rates for insurance coverage.
I feel that until healthy donors are given the true facts, instead of the industry's whitewash, they cannot make a rational decision. Further, I question any doctor who would operate on a healthy person knowing that it could cause their patient harm.
As for cadaver donations, provide some modest compensation to the donor's estate and the number of donations will soar.
Dale, you're probably right about the donation rate increasing with compensation.
To address your other points: Non-donor nephrectomies are obviously performed on people who are ill, why else would they be doing it? Donors are always healthy, so the mortality rate would logically be much lower. The cause of some donor deaths has been the use of clips instead of sutures, which is something surgeons are now (or should be) well aware of. Nephrectomy itself shouldn't be any more dangerous than appendectomy or hysterectomy. Healthy kidneys are extremely redundant in function, so loss of a kidney should not become an issue in the future. I'm personally down to about 25% function and I'm doing fine. Of those 44 donor deaths, how many were directly related to their surgery? People die from all sorts of things, at all ages. Is that information available?
As for graft survival, what isn't made clear is reason for failure - for example, Medicare only considers a person "disabled" for a year (maybe two; I'm not sure) following the transplant, at which time those benefits cease. How many grafts fail after that because the patient can no longer afford anti-rejection drugs? What was the condition of the patient at the time of transplant? Are there other conditions (such as diabetes) contributing to the overall health situation? What was the age of the recipient? Not all are young, and a graft could fail simply because an elderly patient died of other causes unrelated to the transplant. How faithful was the recipient to the drug regimen? There are many factors to consider when assessing transplant success that aren't directly related to the viability of the graft itself.
My sister and I both have PKD, and are very grateful to be living in a time when our lives don't have to end when our kidney function does. We're both intelligent, educated, contributing members of society, so understand that I'm going to resent anyone insinuating that we - or anyone else - shouldn't have access to this procedure, just because some people find it distasteful for whatever reason.
rkaralius, I do not think we are as far apart as it may seem. We both, I believe, want good health care and good health choices. Since you shared your situation, I will share mine. I am retired and except for having to take blood pressure medicine, am in perfect health. I run nearly daily and compete in 5K and longer runs. I regularly do well in my age group. As such, I have a rather dim view of people who do not take care of their bodies. I also am quite suspicious of the push for organ donations by people and organizations that benefit from the process. Basically I think that you and I are like the proverbial blind men trying to describe an elephant.
I would be more positive towards cadaver organ transplants if some compensation were made to the estate of the donor. Considering that a kidney transplant costs about $265,000 for the first year, just 1% towards the estate (Times 2 since there are 2 kidneys) would greatly help defray burial expenses.
I would be more positive towards living organ transplants if a similar amount was set aside for life and health insurance for the donors.
Dale, I commend you for your sense of responsibility regarding your own health, which I share. Unfortunately, for me and anyone else with PKD, no amount of exercise, healthy eating, or other good habits will stop our kidneys from failing. I know, because I do everything right - and always have - and although I probably have been able to delay the progression of my disease, there's no way to stop it completely. It's very frustrating for me to see people going through life unhealthy when the only thing standing between them and good health is their own choices. What I wouldn't give to be in their shoes...then again, my determination to be as healthy as possible at the time of my transplant - because I feel an overwhelming obligation and responsibility to make full use of this incredible gift - has undoubtedly made me healthier overall than many others with no disease at all. The worst part of it, for me, is not being able to give a kidney to my sister. If I could, it would already be a done deal, because she needs one NOW. When she went on the list last year, she was told 1 1/2 - 2 years wait...now it's 2 1/2 - 3 years. I guess what I want to really stress to you - and anyone else - is that not everyone needing a kidney (or other organ) is in that position through their own bad decisions. PKD is the most common life-threatening genetic disease but most people have never heard of it. Since it's genetic, related living donors are hard to come by (no one in my own family is eligible), so we have to wait for another family's tragedy...I do agree with you that living donors should NEVER be penalized in any way for their generosity. If that does happen, it's a total travesty.
I have done some reading on PKD. It is the fourth leading cause of kidney failure. Now that genetic counseling is available and prenatal testing can identify this genetic illness, its prevalence should dramatically decrease. Those who are being born today with PKD in the US are the result of the poor decisions of their parents. Bottom line, living donors are putting their life and health on the line, they should have health and life insurance to make sure they are not penalized. The families of cadaver donors should have some compensation for their inconvenience. These reasonable and sensible actions would make more kidneys available. At the same time, more effort should be expended in preventing children from being born with preventable genetic diseases.
If families truly loved the deceased, they would respect their donation wishes. It is truly selfish of any family member to even attempt to override that decision.
My aunt made a fuss about donating my grandfathers organs when he died, and my mom is still angry about it. If a person wants to make a donation to save someone else's life, why are you going to take that one last wish away from them? If anyone in the family makes a fuss about donating my parents organs when they pass, you bet your behind I will make a fuss right back. I have explicit instructions not to let anyone stop the organ donation, and I have the same wishes for myself. You have no need for your body once you are dead, why would you hold back from possibly allowing someone else to live? I realize some people have religious reasons for doing so, I can understand that, but a lot of people don't want to just because "it freaks them out a bit". To them I say, "get over yourself". It can save a life and you don't need the parts anymore. Do it.
I agree that the families of the deceased should receive some compensation, if only because it might increase the number of organ donors. There was a regulation passed not long ago that allows some small compensation for being a bone marrow donor. I don't recall all the details - it was $3000, I think, to the nonprofit of the donor's choice. Not exactly paying for an organ, but some compensation for time and trouble. The problem with payment for organs is that the richest people would get organs while the poor did not. However, instead of a blanket "no payment" rule, there should be a regulatory body with a pool of funds to pay the families of the deceased some small compensation. Maybe insurance companies who are paying for the people on the wait lists could fund it, or taxes could fund it, or some combination. Consider also that if rich people paid for specific donors to donate, that would free up the number of organs from altruistic donors to go to other people who can't pay. There is no easy way around this - the rich get better and more goods and services than the rest of us. Organ sales happen under the radar, privately, even though it's a crime. If it weren't a crime, we could better regulate the practice and make it more fair, but it will never be perfectly fair because life isn't perfectly fair.
The richest already get the organs!
What's really blocking things is the legal requirement of "donation" from the owner of the organ, while the doctor and hospital doing the transplant make tens of thousands per operation. The real value is the organ. There should be a standard value given to the estate of the donor, say $5000 per organ. That would raise the level of donations.