Mormons and death: Giving the gift of life
When I first signed up to write this post, I had stories to tell. Specific stories about how tragedy in one family lead to a new dawn for another. How tearful prayers on one side were answered with great blessings, while the courageous actions on another made them possible. How congregations and communities were changed by an unknown family’s gift of life. So many terrifyingly beautiful stories of love.
And … I can’t share them. In between the date I signed up, and the date I started writing, my hospital constructed a policy that forbids me from sharing these stories. I’ve struggled with how to write this post. Honor my employer, and scrub away the personal voice? Or honor this community, and share the urgency I feel for this issue? In the end, I’ve tried to walk a middle path. I have a lot of the structure of the issue here. Please help me fill in the details with your input and personal stories.
According to the US Department of Health and Human Services, there are approximately 110,586 people listed for organ donation. On average, 75 people a day receive an organ transplant. And about 18 people die each day, waiting. While science may provide a supply some day in the future, and we haven’t descended to the point of cloning and cultivating like in Kazuo Ishiguro’s Never Let Me Go, the need far outstrips the supply.
The list of transplantable organs includes: liver, kidney, pancreas, heart, lung, and intestines. In most cases, the donor has suffered brain or cardiac death. However, with livers, kidneys, lungs, pancreases and intestines, it is also possible to perform living donor transplants, where only a portion of the organ is donated, and the healthy donor is able to live an unfettered life.
The Church of Jesus Christ of Latter-day Saints has very little information about organ donation on the official website. In fact, there are more links for people wanting to donate pipe organs to meeting houses, than there are for people looking for answers to life-or-death questions. The most pertinent link is to an Ensign article from February 1988. In this article, Cecil O. Samuelson, Jr., regional representative and physician, who is not speaking in an official church capacity, gave a very cautious endorsement. He also noted that, “organ transplantation does not affect one’s resurrection,” pointing to the promise of Alma 40:23, that “all things shall be restored to their proper and perfect frame.” From the discussion on Jana’s Donor post, it would seem that many in the Exponent II Blog community agree.
Incidentally, I did see this statement on the US Department of Health and Human Services website, also echoed on the UNOS website:
The Church of Jesus Christ of Latter-day Saints believes the donation of organs and tissues is a selfless act that often results in great benefit to individuals with medical conditions. The decision to will or donate one’s own body organs or tissue for medical purposes, or the decision to authorize the transplant of organs to tissue from a deceased family member is made by the individual or the deceased member’s family. The decision to receive a donated organ should be made after receiving competent medical counsel and confirmation through prayer.
I’ve seen both sides. I’ve seen parents, overwhelmed with grief, reach past their current tragedy and give the gift of a healthy tomorrow to another. I’ve cared for their children, held the parents as they cried, and shared in their mourning.
I’ve also seen sick children made well through these gifts. I’ve seen them wake from their surgeries, and helped them struggle back to a healthier life. I’ve helped these parents navigate their new found happiness and responsibilities.
How do you feel about organ donation? Would you do it for a family member or friend? Would you be willing to donate your organs to a stranger if you were brain dead? Please share how you came to this decision. Have you talked with your family about your views, and do they understand or agree with your wishes?
I used to think that Mormons didn’t believe in organ donation because of what my parents told me- resurrection etc. But, as I’ve looked further into church policy, it hasn’t seemed to forbid it, so I think it is a VERY worthwhile and charitable act. I now have the indication with my driver’s licence that I am an organ donor. I would do it for a loved one and I would definitely donate to a stranger if I were brain dead.
My DL lists me as an organ donor although I wonder if a young person would really want my aging organs. I’ve been told that the age of a cornea doesn’t matter. Maybe that’s true of a few other organs.
Amy: I also didn’t understand the disconnect between believing in a perfect resurrection, and turning away from organ donation because of fear of incomplete resurrection. I wonder if it’s generational.
Course Correction: I don’t think the age of the organ matters as much as the health of the organ. I also know that there are young children dying to get healthier organs than the ones they have. Some organs need to be size specific, like the heart. OTOH, some can be divided up. Lung and liver recipients can receive just a lobe.
I’ve also got the organ donor pink dot on my DL. However, I also have a medical condition that might make my organs unsuitable for transplantation. In this case, I have thought about donating my body for use in medical science. After reading Mary Roach’s _Stiff,_ it seemed like a viable and useful option.
I LOVED Mary Roach’s Stiff, but I had to listen to it in sections (it was my listen in the car book on cd) because sometimes it would just creep me out. I am an organ donor – and I’ve made sure that my family knows I want to be an organ donor, but I’m not sure about donating my body to science. I know I’ll be dead – and that the body doesn’t matter, but there’s just something weird about thinking I could be a cadaver and people can see me naked (yes I know it’s not really me anymore) and the community college might get the already used cadaver from the university – or maybe I’ll be broken up in pieces and sent to different places… or left to decompose in various situations which might help solve crimes (which admittedly is really cool) but it turns out I’m just slightly protective of my body – even though I won’t be in it. Organ donor yes – science donation … no.
I am not opposed to having students dissect my body, especially since I have had the opportunity to do this type of work. Inevitably, there will be those who are not respectful. However, I do think that it is an important facet of health care studies. I already work informally to further the education of medical residents and fellows, and this seems like the logical next step.
Course Correction
It really doesn’t matter about your age. As long as you don’t have any communicable diseases, and or Cancer anyone is able to donate.
I am all for it. It’s not like I’m going to be using them anymore. I’d rather have my body be put to good use as oppose to laying around rotting in a grave.
I’m listed as an organ donor on my driver’s license. I’m a big supporter of organ donation. Once I’m gone, I won’t need them any more, so it makes perfect sense to let someone else use them. To do otherwise strikes me as a senseless waste of life.
My dad wants to be an organ donor, but my mom is opposed to the idea. (I think it’s an emotional issue surrounding the icky factor, not a moral or ethical issue.) As a result, my dad is not listed as an organ donor. I find that tragic. I mean, if my mom doesn’t want to donate her organs, that’s her business, but I don’t like the idea that she’s preventing my dad from donating his. (If I marry, I’ll respect my husband’s wishes regarding his organs, and I expect him to respect mine.)
Dora,
Do you have any sense of how many people are designated donors? You mention that demand outstrips supply. I did a very quick search for daily death rates and it does seem that there are far more people dying in the U.S. than those needing organ donations (800K + annual deaths from heart disease, for instance; 45K annual deaths from auto accidents and 75K + annual deaths from other kinds of accidents; these are U.S. numbers from 2006). I know there are lots of factors that contribute to whether someone’s organs will work for donation, but given the high number of deaths compared to the number of organs needed, I think it’s really unfortunate that demand outstrips supply.
I’ve been designated a donor since I got my drivers license. I remember putting the little pink sticker on the back of my license and signing the permission agreement, asking my mom to be the witness. It felt a little forbidden, since somewhere I had acquired this idea that Mormons believed we weren’t supposed to donate our organs. I think that idea is related to the notion that the church discourages cremation, which is also usually explained in terms of resurrection.
I have to say, I simply do not understand what could possibly be a good reason not to designate oneself a donor. It simply seems a bit selfish to refuse to allow one’s organs to be used to save another life, regardless of what the reason is for refusing. If I’m ever brain dead, I hope they harvest every single usable bit of my body to help someone else, and the rest can go to scientific research. I’m a bit more hesitant about donating while living unless it’s for someone I know. I think that hesitation has more to do with wanting to have the option to donate to a loved one should the need ever arise and not wanting to have already donated to someone I don’t know. That might make me selfish; I haven’t examined it much.
In the US, the default position is that no one is an organ donor. Which means that permission has to be obtained. From what I understand, there are nations where the default position is that everyone is an organ donor unless otherwise noted. I think that the latter position makes more sense.
As for demand outstripping supply, there are many factors that go into who gets what organs. The donor and the receiver must be histocompatible, otherwise the risk for rejection may outweigh the risk for transplantation in the first place. Size of the organ matters as does the health of the donor. In just about every heart transplant that I’ve been involved with, the donor became such as the result of a sudden trauma. Distance between the donor and receiver also matters, with organs being made available first to compatible recipients within the same hospital, city, then state. I believe that any body that is involved in a coroner’s case, or needs an autopsy, is not eligible for donation.
Most living donors are relatives of the recipient. Besides having a vested interest in the health of the recipient, the donor is generally more compatible than an unrelated donor. For what it’s worth, I wouldn’t call you selfish for not seeking out opportunities to donate a non-vital organ to someone you don’t know.
I remember reading about this issue in a book called Nudge. The authors cited it as an example of a situation where simply changing the default (from not donating to donating, or in other words, opt-in to opt-out) dramatically changes what people will do. If I remember right, one country that had success with changing to donation by default was Spain. I think we should definitely do that in the US as well.
I agree with all the commenters above (and below). Organ donation seems like a total win-win. Someone else can use my parts when I’m done with them, and I get the happy feeling of knowing that I might be able to do a bit of good for the world even in death.
I also had the idea that Mormon’s disapprove of organ donation from my father. It must be generational, and I wonder if Pres. Kimball had anything to do with this idea…
But, I remember my response to his suggestion that this might not be appropriate or sanctioned by the church. I believe I had already put the pink sticker on my license, or was going to, and I plan to remain on that list. I thought, if you need a heart transplant, would you turn it down because the church had told you that transplants were not ok? I wouldn’t. So, I’m with amelia on wanting to have every usable bit of my body available to people who need it.
And, Dora, isn’t that quote from the handbook?
I’m not sure where the quote came from originally. I thought it might have come from the church PR department. I highly doubt that the two agencies would have used an apocryphal quote. It’s possible that it’s from the handbook, but since I don’t have one, I wasn’t able to verify. If anyone can verify that it’s in the CHI, that would be great!
It’s also interesting to wonder about the disconnect with being okay with receiving donated organs versus not being willing to donate.
I’ve been an organ donor since getting my first driver’s license as well. They might not be able to use certain parts–like my lungs, given that I’m asthmatic (I’m not sure how that would affect rejection issues–no idea)–but I figure better to say I’m willing and let those making the organ assignments worry about compatibility than say no just because I worry something might get in the way.
As a related issue, now that I’m in my late 30s, I’ve been thinking more and more that I should put together a will/living will. I just always figured that’s something I’d do when I got married and had kids–someone to protect as far as my stuff went–but the more I think about it the more I think I should plan the way I do for organ donation. I don’t plan on dying anytime soon, but if I did, I’d want my family to know my wishes, both with organ donation and with other things.
I’m renewing my Drivers License in a few days, and will make sure that the sticker is on my new one. However, it is important to make sure your next of kin is aware of your wishes, and even better, write it down and have it notarized. Because even though the sticker is nice and pretty, it’s not legally binding. And this way, if you write down your wishes, you can explain exactly what you’re willing to donate, and what you’re not — somehow donating my eyes creeps me out.
That said, I will be a donator. I had a cousin die while waiting for a pediatric heart, and a friend in my ward just received double lungs. It is an amazing selfless gift that keeps on giving.
Thanks to everyone who has chimed in.
When it comes to organ donation, communication is everything. As ohkj noted, if you don’t have a legal document, your surviving family can override your wishes to donate.
Stacer: it’s a good idea to have your wishes recorded. Even when it comes to what you would wish for regarding resuscitation, and definitelt when it comes to your financial assets.
My husband and I are in the process of signing up to donate our bodies to research after we pass away. (my long-term health issues prevent me from giving blood, so I imagine it’s the same with living tissue/organ donation) I have always wanted to be cremated and this is an additional way to make sure that happens. My grandparents before me did this with their local university and while it was weird to call the head of the “limb department” with a death notification, he was extremely kind and appreciative.
I also thought about cremation, before thinking about whole body donation. It’s strange to think that people believe in resurrection, but with limitations. Is it more difficult to resurrect a body if it has been cremated, exploded, had limbs or organs separated?
Tea, I have chronic illnesses which prevent me from giving blood, and I asked them (can’t remember if a blood drive or at a hospital) about organ donation as well since I had always planned on it before getting sick. They told me if I couldn’t give blood, I couldn’t give organs/tissue either.
Awesome post, Dora!
I worked at a doctor’s office years ago– way back then, one of the doctors was telling me that you needed to register as an organ AND tissue donor. I am not sure if that is the case now, but from memory (and I did secretarial work there, so this might not be medically accurate)… tissue such as tendons and blood can be donated as well, if specified. Does anyone know if this is accurate or?? Because if I am brain dead, why not donate all of my blood as well as organs, if possible?
Thanks Spunky!
I haven’t heard about post-brain death blood donation before. I’ll have to look into it.
I’m also not very familiar with tissue donation. I know that corneas, skin, bone and tendons are transplantable. Anyone else have any experience with tissue donation?
I’ve been an organ donor ever since I’ve had a driver’s license–it just seemed to make sense. After all, I won’t be needing those parts after I’m dead (I’m in my mid 30s).
Only after I married my husband did I decide to donate every bit of me to science (if my parts couldn’t be used for transplantation). My husband, a type 1 diabetic of 30 years, is avid about the benefits of medical research–and the necessity of giving his metaphorical pound of flesh to the cause.
I see no more conflict between organ donation and resurrection than I do between burial and resurrection. After all, if you have a traditional burial, your body is just doing to turn to dirt anyway…and then get incorporated into the flowers that grow on your grave and the animals the eat the flowers….Pretty soon pieces of you will be parts of clover and vetch and red wing blackbirds and cows.
Organ transplants were still considered experimental when I was growing up, and the donor option was not available when I got my first driver’s license. I do remember the first time I was asked (on a license renewal) if I wanted to be a donor. The question caught me by surprise and I said no. However, I did some research and serious thinking on it and then changed it to say yes on my license. I talked to my husband and children about it too and I believe they are all designated as donors now as well.
If no one had ever asked, I would likely never have seriously considered it, so I appreciate the ad campaigns and posts like this one that bring it to our attention. It just seems like a sensible thing to do.
Are the 110,000iah people “listed for organ donation” you mentioned waiting for an organ, or signed up to fork some over when they expire? I’d be saddened and amazed to hear that only 110,000 out of millions of US drivers agreed to organ donation when getting their licenses.
Maybe it’s because (as my friend told me in high school to convince me to drop donor status) when your license says organ donor the hospital/paramedics will let you bleed to death or whatever on purpose so they can harvest your juicy bits 😉
Serious question though– when organs are harvested after “brain death” occurs, does this mean they pull the artificial respiration stuff, let you stop breathing long enough to declare you dead, and then start removing all your warm squishies? ’cause it would be kind of unnerving to think of them tucking in while you’re still technically alive.
The 110,000-ish figure is the number of people who have been approved by a transplant hospital as qualifying to receive an organ transplant. According to organdonor.gov, over 86 million people in the US are signed up as donors. However, not everyone who wants to be a donor is able to donate.
Your high school friend is sadly misinformed.
There are two types of death associated with organ donation: cardiac death and brain death.
In the case of organ donation after cardiac death, the family has already decided to withdraw life support. If the family also agrees to organ donation, the patient is taken into the operating room, and life support is withdrawn. If the patient’s heart stops beating within a certain timeframe, the team waits a specified amount of time before harvesting the organs. Again, this is organ donation after cardiac death, because the heart is allowed to stop on its own. The only organs that can be harvested from this type of donor are the kidneys and the liver.
In the case of organ donation after brain death, the patient has been declared brain dead, but the body is still being maintained on life support. In cases such as these, the patient is taken into the operating room, and the organs are harvested while the patient is still on life support. This type of donation allows hearts, lungs, intestines, and pancreases to be transplanted.
In both cases, the patient is already technically dead before organ harvesting can begin, and generally the next of kin has given consent.
Dora, thanks for this post! I became a real advocate of organ donation after working as a chaplain. I think the hardest thing about organ donation is that for the big organs like heart, lungs, and maybe liver is that the death has to fit the criteria you just listed. The death has to be fairly traumatic and fast, which means usually the donor was going about their normal day–fixing a roof and falling off of it, watching tv and having a brain aneurysm.
I think that is why the gift of organ donation is all the more touching. The family has to process what happened, accept it, and be willing to give away those organs (in the state I worked in, it didn’t matter what the DL said. The next of kin gave consent). I don’t know if I’d be able to give away DH’s organs if I hadn’t had time to get educated and think about it.
Just a postscript, since I recently took a class focusing on care of the older adult. If you have decided to become a donor (organ, tissue, whole body, etc), please discuss this decision with your family. They will be the one talking with your healthcare team if you become incapacitated. Better yet, talk to your family about what you would want regarding treatment should you become incapacitated. Do you want everything done to revive yourself? Do you want nothing done? Do you want to be revived only if there is a good chance of mental and physical recovery?
If you live in California, here is information about filling out an Advance Directive. And here is the actual form.